A Side of CF

Keeping Healthy, Getting Healthier

2012-01-29T06:35:00.000-08:00

In the past I've done a new years review and goal for my health. I was thinking that I should pick a few realistic goals this year. I am admittedly having a hard time keeping on top of everything I feel I need to do to maintain optimal health but my standards are also super high so..... I feel torn most times.

#1 is my weight, it is too high, need to trim down to prevent diabetes issues and less food will most likely improve my issues with candida as well

#2 stop skipping night time treatments, I used to be almost 100%, need to get back there

#3 add back cardio, need at least 3, preferably 5 days of getting my HR up and clearing my lungs a bit of toning would be a good idea too

#4 rinse my sinuses...daily! Even though I dont feel I have enough goo to justify it I do feel better when I do it and it will help flush out cold/flu bugs this time of year

#5 take my probiotics, lauricidin, and NAC each day....I am so good about my 'pills' but so hit or miss on these

This seems reasonable, may need ot make myself a checklist or something to get back on track.

White Tea

2012-01-28T11:12:00.000-08:00

So I have been drinking tea for a long time but since I didn't use to drink caffeine it was mostly herbal tea packets and nothing special. Last year I started stopping by a tea shop specializing in an amazing array of loose leaf teas and brewing cups and systems. I decided it was fun to have a cup with an individual strainer in it for work.

I had only tried limited herbal and green tea varieties so imagine my surprise when a friend suggested drinking white tea helped loosen her mucous and helped her feel better. I thought she was a bit crazy to be honest. I have tried it myself and I have to say that not only do I like white tea more than green (it's smoother or more bland with less grassy/earthy taste) but that I also noticed that I got up a lot of gunk and felt good when drinking it. The other nice thing, for me, is that I can drink a lot more of it throughout the day without getting 'buzzed' on too much caffeine since it has the lowest caffeine content of all the teas.

I decided to look into the white tea phenomenon a bit since it does truly seem to help me and I found that what we've noticed is what the Chinese have known for eons......tea has a TON great stuff in it for you. White tea is also the highest in polyphenols, antioxidants, etc since it is the youngest and least processed......it also, unfortunately means its the priciest.

Speaking of caffeine, a common website that does nothing but compare amount of caffeine in beverages had the values listed below as common for varying beverages, I thought it was interesting to see some common beverages for comparison.

mg/oz (Note this is PER ounce not cup)
Decaf Coffee 0.9
white tea 1.9
green tea 3.1
Common Pop 4.5
Iced Tea 5.9
Coffee 13
Espresso 51

Tea is noted to vary widely in the levels of caffeine based on type, variety, brewing etc. The Department of Nutritional Services provide the following ranges for loose leaf tea:

mg/oz (Note this is PER ounce not cup)
Black Tea: 2.8-13.8
Oolong Tea: 1.5 - 6.9
Green Tea: 1 - 4.5
White Tea: .8 – 3.1

If you are sensitive to caffeine or avoid it altogether here is a handy hint. About 80% of the caffeine will be extracted within 30 seconds of steeping, you can easily remove most of the caffeine in any tea by steeping for 30 seconds in a 'throw away' cup of hot water then transfer the pre-brewed tea leaves to your cup.

I've only just begun experimenting but I'm impressed. Let me know if any of you give it a try.

Here are some links to sites with cool general info on health benefits of tea:

http://www.whiteteaguide.com/whiteteahealthbenefits.htm

http://www.whitetea.com/benefits-of-white-tea.php

tea vs superbug & increasing effectiveness of antibiotics
http://www.sciencedaily.com/releases/2008/03/080330200640.htm

tea increases anti-inflammatory properties in body and decreases pro-inflammatory factor in body
http://www.biomedcentral.com/1476-9255/4/1

What I'm Reading

2011-11-11T11:54:00.003-08:00

I am still loving my kindle though finding the time to read can be tough. Even though the voice on the kindle is android I have found I enjoy plugging in some earphones and listening to the books while driving.

Reading:
Bonhoeffer: Pastor, Martyr, Prophet, Spy
Weigh Down Diet
I'm Chocolate, You're Vanilla: Raising Healthy Black and Biracial Children in a Race-Conscious World

Read:
A Swiftly Tilting Planet (Madeleine L'Engle's Time Quintet)
A Wind in the Door (Madeleine L'Engle's Time Quintet)
A Wrinkle in Time (Madeleine L'Engle's Time Quintet)
Growing Up in the Care of Strangers: The Experiences, Insights and Recommendations of Eleven Former Foster Kids
Nairobi Heat (Melville International Crime)
Heaven is for Real
Unbroken: A WWII Story
Secrets in the Cellar
Damaged: The heartbreaking True Story of a forgotten Child
My Dad's a Policeman
A wrinkle in time
Tough as nails: One Woman's Journey Through West Point
Ape House: A Novel
Climbing the broken stairs
Call It What It Is
Empty Chairs
Abused--a daughter's story
Pregnant women on drugs: combatting stereotypes
Oliver Twist
Hiding Place -Corrie Ten Boom
Band of Brothers: E Company, 506th Regiment, 101st Airborne from Normandy to.....
Bondage Breaker
Lamb
Green For Life
Smoothie Revolution
Citizen Soldiers: The U.S. Army form the Normandy Beaches to the Bulge to the Surrender
Harriete Tubman: Conductor on the Underground Railroad
Taming the Nueces Strip - Durham
The War Journal of Major Damon "Rocky" Gause-Ambrose
5 Love Languages - Gray
Power Praying Wife - Omartin
Dare to Discipline - Dobson
123 Magic
When Bad Things happen to Good People - Kuhner
Scientist in the Crib--Science meets how babies brains work--this just interests me
Happiest Toddler on the Block
Millionaire Next Door - Stanley
Love Dare
Home Safe Home (alternatives to toxic laden household products)

'One of these days'
Skinny Bitch in the Kitchen (wholistic eating)
Omnivore's Dilemma
Power Spoken Word
Power Spoken Tongue
Sacred Marriage
Butekyo Breathing Shut your Mouth
The surrendered Wife-Neumans
"Better' - Atu Guande
Woman Power - Schlessinger
Priceless - Ramsey
Proper Care and Feeding Marriage - Schlessinger
QBQ - Miller
Raising Girls - Dobson
DNA of relationships-
The Greatest Words Ever Spoken
Power Praying Wife
Purpose Driven Life - Warren

cups, treatments & nebs, oh my

2011-10-21T09:35:00.000-07:00

http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/LungHealth/WhichNebulizer/WhichNebulizerForWhichDrug.pdf

I was getting confused on which nebulizer cups to use with my mobilaire and my pari and for which drugs, this is helpful.

Tracking FEV1

2011-10-21T09:34:00.000-07:00

Wow, what a slacker I am, I haven't been here in forever. I'd love to say I'm going to get better but the truth is life is pretty busy and while I think about good posts in my head they rarely make them to my fingertips. That being said I saved my pulmonary report from last week and wanted to get it recorded before I lost it.

Considering it's October, I just got over a cold, and a few other factors not in my favor I'm doing pretty well but my numbers are lower than I'd like. Need to hop on the compliance and work out bandwagon aLOT harder.

Oddly, after all my sensitivity issues and then reacting to antibiotics this most recent culture came back astoundingly sensitive, so much so I think it's a fluke. It showed only pseudomonas, no achromabacter and it was sensitive to everything except chloramphenicol which isn't even used in my clinic. I told the doctor I didn't buy it, I've worked in a lab long enough to see a HUGE outlier and we're taking bets on if the culture from this week shows up the same way or not.

Also, to note that my fantastic results of last april are highly atypical, I have not since achieved such results, of course, to be fair, I am no longer doing the candida diet and treatment, may be time to start that again. I have been running FEV1 in the 90's all year.

19Oct2011 FVC 95 FEV1-90 FEV25/75-84
Clinic Notes: One week post nasty cold, rainy, no morning breathing treatments. Mucous production still above baseline but cough back to almost baseline. Sinuses problematic lately. Some pleural tightness but not sick.

23Apr2010 FVC 127 FEV1 114 (up 14% WOW) FEV25-75 102 (up 12% WOW)
Notes: this is especially fantastic given my allergies are running wild and I have seen a drop in my peak flow the past few days from it. I normally write down my PEF (peak flow) but he pointed out that mine was off the chart this time, my Peak flow was 11.82 which equates to 150 L/min higher than two months ago i.e. the little plastic things we use measures in L/min.

Clinic Notes: Discussed recent treatment for candida. Fatigue, chronic pain, pleural pain, all gone. Lung functions are the best on record and it is after no drugs or steroids where as the 108% last year was after serious steroids.

18Feb2010 FVC 110 FEV1 100 FEV25-75 90
Clinic Notes: This was post IV's (stopped Christmas Eve) and 2 rounds prednisone totaling 5 weeks (1st round stopped New Years day and 2nd round was 3 weeks in January). Infection is gone but still having chronic pain on left side when breathing, especially deep breathing, still intermitten pleurisy, still fatigued and not feeling right, feel like I do right before I get a bleed. Discussed potentially entering chronic pain phase of CF (I do not accept this). Also started drinking mucomyst N-acetylcysteine since last visit so reported good results in gastro area from this, no large effect noted on the lungs. Discussed going to CA to consult with Dr.Moss on inflammation and also discussed pursuing testing for candida with family doctor.

3May2009 FVC 118 FEV1 104 (down 4%) FEV25-75% 88 (up 1%)
Clinic Notes: re-check post steroids and pre-pregnancy (attempt). Everything looks great, feeling good, allergies are problematic and doc did say that my theory on my allergic reactions having residual inflammatory effect on my lungs (which I did another week steroids for) was very possible. His pregnancy recommendations are to be vigilent with physiotherapy especially hit it hard in 2nd tri' to get ready for 3rd when lungs are most compromised and there is the biggest risk.

March2009: FVC FEV1 108 FEV25-75% 87
Clinic Notes: Recheck after end of steroids, feeling good. Best FEV1 ever!

29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.

15Dec2008 FEV1 103 FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 82

4Dec2007: FVC 99 FEV1 91 FEV25-75% 77

update on me

2011-06-12T19:32:00.000-07:00

A couple weeks ago I had a pretty nasty cold it was also right after we found out the Elliott had MRSA. I took that week, two weeks ago, off work thinking if I rested up from the cold which was kicking my butt and did the right things it would be 'just' a cold. I also figured that would give me the time to find E a new home and get our house decontaminated from MRSA which was an undertaking, the washing of stuff at the Laundromat alone cost almost $50.

I went to the doctor that week for my lungs as well which was a normally scheduled visit. My lung function was down a bit but at that point it was still just a cold and we agreed to watch and wait. I started to feel better on Sunday and was more than a bit tired of ‘taking it easy’ so I decided to be busy and productive, tell my body to get over it and all was pretty good; I was looking forward to returning to work on Monday. My body had other plans I woke up about midnight with severe lung pain on both sides, after some ibuprofen failed to work I woke Jared and asked for a vicodin that I have for lung pain then I decided to go to the ER as the vicodin wasn’t working either.

The ER was a futile trip spent in pain during all the hours of waiting while listening to the drug addict next door yell about he was in fact sober and they should let go of him and let him get back to the mission…fun times, I’d never been so glad for my kindle. Everyone seemed to think either I was having chest pain or back pain, no one seemed to accept that I was having pain from my lungs radiating down part of my back and into my chest….try explaining that when you can’t take a real breathe. I have to admit hours later when the doctor finally came in and told me it was a virus that just needed to run it’s course and I should just continue doing all my normal treatments I completely lost my cool and chewed him out telling him if I could breathe enough to do a breathing treatment I wouldn’t be here in the first place. In the end I said I’d follow up with my doctors and wanted to leave and apologized for being short. He said that he would give me something for the pain and send me home with instructions I could take two vicodin next time and then had the nurse give me so much dilaudid I was loopey the good thing was it stopped my coughing which also served to reduce the pain; I could tell as soon as it took effect as I could draw a breathe without pain.

The next day once I woke up I called my doctors who decided to start me on IV’s which arrived the next day. I was to do on inhaled antibiotic and IV zosyn which I have been on many times over the past about 5 years. The drugs in my lungs are pretty resistant to many antibiotics and zosyn seems to be the one stronghold that really works. I started my IV that night so it did one IV then and one during the night while I was sleeping and then I slept through while it was infusing my early morning one, 3 doses in total. Imagine my surprise when I woke covered in blotchy hives. Zosyn is a member of the cephalosporin family and it looks like I’ve developed a sensitivity to them. This was obviously a big blow to me since I had to stop the antibiotics and then they weren’t really sure on what they wanted to do since it appears that most of the drugs the bugs in my lungs are not resistant to also just happen to be part of the cephalosporin family. It took a day or so and then I started levaquin which is a strong oral antibiotic, initially I protested because it doesn’t normally work for me and the doctor had already passed over it in favor of IVs. I have what they call “intermediate” to that drug meaning basically it works but not as well as it should. Since our options were limited my normal doctor confirmed that was the best course but at a higher dosase and in continuance with the twice as strong inhaled antibiotics I was still doing.

The good news is that this combo seems to be working. Honestly I believe it is the inhaled antibiotic doing a good portion of the work since it started improving before the levaquin but with the type of bugs we CF’ers have in our lungs you never want to treat with only one antibiotic since that allows them to more easily build a resistance.

What one drug reaction wasn’t enough? Ok number two has intensified over the past week or so on the oral antibiotics and I am not scheduled to finish until Friday. I have previously been told I have plantar fasciitis in my right foot now it has intensified greatly and the left foot has started in. The bottoms of both feet have a swollen red nodule present just past my heel that persists despite icing and ibuprofen popping. According to Dr. Google it seems I may have really aggravated the fasciitis or partially torn it…fun. Levaquin has a black box warning from the FDA about tendonitis and tendon rupture but I am pretty certain it is responsible for this recent turn of events. I’m going to give my foot doctor a call on Monday to see if he can get me in. Unfortunately the tendon on my left wrist and foot are also hurting, I’ve had a bad bought tendinitis in my wrist before so I’m pulling out the wrist guards for sleeping to hopefully keep it from getting worse.

So let’s see, cold, MRSA scare, lung infection, hives, and now I’m hobbling like an old woman….ah these are the times of CF.

The good thing is that even if I have to stop the levaquin my lungs don’t feel in too bad of shape. I may be able to stop orals and start a second inhaled antibiotic, that will make for a lot of nebulizer times but if it lets me walk again and breathe easy it will be worth it. Better news is that the MRSA scare was just that, so far, a scare I have not tested positive for MRSA in my nose or my lungs *claps*. Also awesome news is that E is doing wonderfully as the only child in a first time foster family who are thrilled to have him are supporting reunification but also hoping to adopt some day.

Long Overdue, Update & Candida

2011-03-30T19:44:00.000-07:00

Seems I am long overdue for a post or an update. I have been neglecting posting things I've been thinking about but I *have* been thinking about the blog a lot. I've been wondering if I should combine this with my personal blog, it seems I have so many 'special interests' CF, IVF, budgeting/Dave Ramsey, and now being a foster parent and hopefully soon adopting and I can't start a blog for all of them LOL! I considered starting a blog for our fostering/adopting and then I thought 3 blogs, really? no way! I think there are some things on here that are just 'too much' for some in my family readership but I'm torn. What say you.........combine or compartmentalize?

Anyway I just finished a 2 week course of zosyn and tobramycin yesterday. SO thankful that is over. I know some of you are hardcore and handle IVs like a rock star and while I like to think I have a pretty high tolerance for some things IVs are NOT one of them, especially zosyn. The good thing is that it makes me take the time to rest and allow my body to heal. The bad thing is...well, I feel awful, get migraines, extreme fatigue, and nausea.

I started 40mg of prednisone yesterday. I have found the past 2 times I have done IV which for me is zosyn I get very clear, very dry, but also inf lammed. The first time they did a bronch and all sorts of stuff which I've previously talked about to confirm it was "just" inflammation. This time the inflammation is not as bad (I've got my theories on this..in a few) but I decided to ask for a short burst to get everything in tip top shape. this is a risk since I think 1/2 my town is sick right now so I'm staying away from people as best I can aside from picking kiddo up at daycare and that involves hand sanitizer galore! Right now we just got over stomach flu which is going around, I have a 1.5 you nephew who just had surgery for a sinus infection that went abscessed due to MRSA, a 3yo niece with pneumonia, and a 6 week old niece with RSV! Whew. No seeing family for a while either.

So, my 'tip top shape' plan includes drinking the NAC (for me 20% USP grade acetylcysteine) 3x/day @ 1500mg, taking a probiotic that is formulated to eat candida yeast, a probiotic blend that is highly rated, doing the 5 days of steroids, diflucan each day to kill off the overgrowth of candida, loading myself up on HTS treatments to moisten/loosen anything that got dried out and stuck during IV's (my normal pattern is to get clear/dry after a week on IVs then get nothing up then a few days after IVs I get some of the 'stuck' stuff up which I think is stuck due to the inflammation the IVs cause). I also am trying to do some light form of excercise each day but I have to work back into that since I've been out of it for a while.

The inflammatory cause, as I mentioned I have my suspects. I have been treating myself for candida overgrowth of the gut for almost a year now. I don't have it 'beat' by any means but its better and I think that is why my inflammation is better this time around. Candida for me causes a lot of inflammation. So, in addition to the regimen above I am also doing the MEVY diet again, I really should have been doing it while I was on IV's and I did, some days, or parts of some days. I am so miserable on IVs and when I first start MEVY my body was revolting and I was too weak to do both (weak as far as resolve not physically). MEVY stands for meat, eggs, veggies, yogurt which is all you are supposed to eat. I am including some nuts and a few blueberries blended into my plain no sugar yogurt to make it more palatable but other than that it's boring. I am a big fruit lover and true sugar addict so its hard. Having candida actually makes you crave sugar even more because if they aren't being fed ie carbs/sugar they aren't happy. The goal of MEVY is not to provide them with the sugar/carb sources they need to live, effectively starving them out.

If you haven't heard me talk about candida before you can look here to start but you can also look for 'candida' in my tag section and they will all come uphttp://cftoo.blogspot.com/2010/03/my-take-on-candida-in-cf-community.html

Essentially your gut has a balance of good bacteria and yeast however when your body balance is off and favors the candida yeast it can 'take over' killing off much of the good bacteria (in my case they could only find 1 of the 3 kids that are supposed to be there) which is beneficial, this then allows the candida to thrive with no one to keep their numbers in check. Excess of Candida can cause a myriad of factors, check here: http://cftoo.blogspot.com/2010/03/candida-what-are-symptoms.html http://cftoo.blogspot.com/2010/02/candida.html One way I have heard it described is that it attacks people where they are weakest. For me it causes inflammation, my allergies got much worse, fatigue, and fuzzy thinking/irritability when it was bad.

What are some of the things that offset your bodies balance to favor yeast over beneficial bacteria? Well it seems much of what us CF'ers need to stay healthy in our lungs is hurting the balance of our body and I believe candida is MUCH more common than we know, since it mimicks and or exacerbates our symptoms of cf.

Hormone treatments including birth control and fertility treatments
Repeated antibiotic use
Steroid use
oh and stress....we never have any of that while managing a chronic disease huh?

Topical yeast, fungus, Candida Wash

2011-03-13T13:58:00.000-07:00

I have zero idea if this will work but it *should* as long as it is not too irritating for your skin. I have had a couple people mention having topical yeast issues, of course there is some feet issues but some people seem to have it on their skin and I have read in some instances it can cause breakouts. I recently bought a 'refreshing' foot spray with peppermint oil, when I looked at it closer it said it will cure foot odor and when I looked at the ingredients I realized I could totally make it myself.

Here is my attempt at coming up with a natural, cheap, wash for someone dealing with fungus or candida issues. I would definitely do a 'spot' test since tea tree oil can be pretty strong.

http://hmbeautyrecipes.homestead.com/SKINcleansers.html

Tea Tree Oil This oil readily penetrates the skin and is useful for treating burns, scrapes, bites, stings, and various skin irritations. It may also help to prevent or treat yeast infections. Very effective fungicide, antibacterial and antiseptic.

Rejuvenating Cleanser Recipe

Ingredients

6 tablespoon Flax Seed Oil

6 Tablespoons Olive Oil

12 tablespoons castor oil

30 drop essential oils of your choice

Instructions:

Add carrier oils to a clean, dark glass bottle. Add essential oils. Gently shake to blend before each use. Store in a dark, glass bottle in a cool place or fridge. Apply a small amount to face and massage to cleanse. Rinse with warm water and a wash cloth. Skin will feel super smooth and silky! Perfect anti-aging cleanser!

Yuck and Ugh

2011-01-26T17:21:00.000-08:00

Well I've been meaning to post just a normal post but of course it's easy to forget when you are feeling pretty good. That's come to a crashing halt.

Last week I took off thursday since it was my 31st birthday. Wouldn't you know wednesday night I could tell I was getting sick and for my birthday I spent the day on the couch with Lillian or in my bed. I tried not to let it damper my day so when Jared got home from work he took Lillian out, picked up dinner and we ate dinner in bed with my bed heater on which I love and I opened my present from him and from Lillian and we watched a show. Friday however I was worse, I ended up with a wretched flu that is still hanging on. I started inhaled cayston and colistin on monday and start cipro tonight (wed) a full WEEK after getting sick. Yuck! My peak flow has went from 560-570 to 420-440.

Wouldn't you know I called my new doctors office on monday and was put into a voicemail and never got a call back. Come to find out she doesnt HAVE voicemail so who knows where it ended up but its why I didnt get a call back.

I'm going to give this a try and I have a clinic appointment next week.

pH

2011-01-24T08:02:00.001-08:00

Just realized I posted this on my family blog on accident, oops, double oops because I haven't gotten the book yet either!

So I got some test strips that measure pH from 5-10 in increments of 0.5 and my husband and daughters pH registered 7 while mine registered 6 and once 5.5 Now I just tested this randomly and there are 'ideal' times to test so I plan to do some more tests. So far my very brief research indicates that a pH of 7.3-7.4 seems to be what the majority of websites are citing.

I plan to read the book Alkalize or Die by Dr. Theodore A. Baroody

Bodily Responses That Fight To Maintain pH

this is from here: http://www.relfe.com/health_natural/pH_human_body_balance_health_level_1.html

All metabolic processes, including immunity, depend on a delicately balanced pH, which harmonizes electromagnetic energies. The body constantly fights to maintain a blood pH at around 7.35 -7.45 much like our internal thermostat that tries to maintain a 98.6-degree body temperature. There are seven homeostatic adaptation responses that fight to maintain this pH balance.

1) Using high pH bodily fluids such as water as a solvent to neutralize acid residues.

2) Pulling bicarbonate from the pancreas into the blood (an alkalizing agent). Bicarbonate ions are generated into the blood cells from carbon dioxide and diffuse into the plasma.

3) Protein buffers of glutathione, methionine, cystine, taurine, just to name a few, act as buffers intra-cellularly to bind or neutralize acids during cellular disorganization.

4.) Electrolyte buffers of sodium, calcium and potassium work in the blood, lymph, and extra-cellular and intracellular fluids to bind acids, which are then removed through the urine.

5.) Pulling stored calcium and magnesium from skeletal bones and teeth to neutralize blood acids.

6.) Filtration and elimination of acidic residues through the skin, urinary tract and respiration.

7.) Pushing blood acid residues and accumulated toxins into outer extremities as a storage bin away from vital organs. The wrist, joints, fingers, toes and skin are the major target areas to keep the toxins from saturating internal vital organs like the heart and lungs.

When all seven-protection phases are overwhelmed, the end result is accumulated acid residues at the cellular level, which drown out oxygen. With this acidic, low oxygen terrain, the microzyma’s (small ferments) trigger morbid microbe infiltration of fungus, molds and parasites, cancer cells, etc., where they seek the diseased acid terrain as food. (Editor's note: The term "microzyma" was created by Antoine Bechamp. These are small living components of cells and are described more fully later in this article ).

As these organisms feed, they produce waste just like you do. Their urine and feces are called mycotoxins, which are very poisonous to humans. Being acids themselves, mycotoxins greatly worsen the acidity caused by an acidic diet and toxic acid emotions. They are spilled into the blood as well as inside cells, where they cause free radical damage to the genetic material of the cell eventually causing cell death. The dead necrotic cells also spill out acid wastes. The blood poisoning results in more cell and tissue poisoning furthering the disturbance of the microzyma triggering morbid forms of yeast, molds and viruses, which disrupts body chemistry causing disease to the systems. So it’s a vicious cycle. One acid condition creates anothet Acidic diet coupled with toxic acid emotions creates an acid pH to the cells. This causes low oxygen levels (hypoxia), which is necessary for keeping back destructive anaerobic microbes and immuno-suppression is the result. Then medical doctors come in and treat the acid condidon with another acid (pharmaceuticals).

http://www.ionizers.org/ph-balance.html

Thus the saliva pH parallels the extra cellular fluid ... pH paper test using saliva represents the most consistent and most definitive physical sign of the ionic calcium deficiency syndrome ... The saliva pH of the non-deficient and healthy person is in the 7.5 to 7.1 slightly alkaline range. The range from 6.5 which is weakly acidic to 4.5 which is strongly acidic represents states from mildly deficient to strongly deficient, respectively.

Most children are 7.5. Over half of adults are 6.5 or lower, reflecting the calcium deficiency of aging and lifestyle defects. Cancer patients are usually a bright yellow, a pH of 4.5, especially when terminal."

I'm applying for mystery diagnosis!

2011-01-04T14:37:00.001-08:00

I'm sure it wont pan out but hoping it can raise some awareness and help others!

_______________________________________________________________________________

As an infant I had unusual bowel movements but gained weight and looked healthy.

As a young child I developed painful stomach problems that at the age of 2-3 would leave me writhing in pain and continually crying. My mother was told that as an only child I was spoiled and I needed to be locked in my room until I stopped. These stomach problems happened periodically throughout my childhood and the cause was never determined despite multiple tests and doctors, by the time I was 7 I had learned breathing and distraction techniques taught in labor classes.

My mother recalls that I had colds and flus more common that some kids and my cough would last longer after the cold was resolved. About middle school it started getting much more pronounced and I was diagnosed with asthma and re-occurring bronchitis. My stomach problems continued intermittently, about once a year.

In high school I started getting sick a lot and ended up with pneumonia, mono, sinus infections, strep throat; you name it and I had it. I also had my first bought of pleurisy but it was after a skiing accident and was attributed to that. My first year of college I got sick a lot, I was living in dorm and I caught everything that went around. I had had a chronic cough for years but in college it began taking on a life of its own, I would cough so much throughout the night security would wake me up at night trying to see if I was ok.

The 1^st semester of my 2^nd year I was seeing the campus doctors, I got sick enough that the campus doctors wrote me a note to take incompletes while they were trying to figure out what was wrong. During 2^nd semester I dropped to a minimal course load and quit going to 2 of my 4 classes, I couldn't keep up with classes or my job as an RA; having always been an excellent student this was very hard. I could barely make it to my 4th floor dorm room (no elevator) and the uncontrollable cough made sitting through classes nearly impossible. I tried to bide my time until the semester was out, when I left that summer I knew I wasn’t going to be able to come back.

Once I was home I read articles on how to talk to your doctor, I made lists and went in prepared to be an educated patient. I was told that she only did 10 minute appointments and if I had more than 1-2 items to talk about I’d have to make multiple appointments. I did multiple appointments, nothing worked even when I told her I thought I had cystic fibrosis based on my reading and reminded her that I had 4 inconclusive sweats tests performed in middle school by another doctor. During the time I was under her care I was told: to get my asthma under control, that I had to loose weight, that I was too stressed, finally at my pushing she diagnosed me with fibromyalgia for my pain and COPD for my lungs. I was referred for a cat scan for the headaches, when that came back clear I received a referral to a psychiatrist in the mail……it was the last straw. I later my medical records and found the terms ‘drug seeking’, ‘hypochondriac’, that I and my mother had a ‘vested interest in my health but were misguided”. I had never even received a nebulizer!

At this point I was sleeping with a trash can next to my bed for the massive amount of mucous that felt as if they were suffocating me during the night. I was suffering from chronic fatigue, my entire body was sore all the time, I had migraines, anxiety, pleurisy that at times prevented me from moving, chronically swollen lymph nodes, my anxiety was out of control because I feared that I would die in my sleep before I would be believed.

I moved to a physician’s assistant that was freshly out of school and listened to me. I was disappointed when she explained that she had to treat me by a normal protocol and then take it from there. I had been through all of this before but she had listened and I really had no other choice so I agreed and was prescribed a nebulizer and a more aggressive antibiotic. Not surprisingly none of my symptoms cleared up but surprisingly for the first time someone believed there was a real problem and she promised to follow this through! She referred me to an allergist (they said I had allergies but not to an extent to explain my symptoms), followed by an infectious disease specialist (nothing found), followed by an internist (nothing found), followed by a pulmonologist. All of this took a very long time and I was really struggling and I had high hopes for this doctor.

The pulmonologist saw me and prescribed me a stronger oral antibiotic and did some testing, I never felt I was getting any answers from him despite the fact I had started coughing up blood intermittently. Much to my surprise he had been working with a pediatric pulmonologist specializing in cystic fibrosis. I was given a referral to them (and discovered they were the same office that had seen me during the sweat testing in middle school). I did not know at the time I arrived for the appointment that they were for CF I just knew they were another doctor and I really had very little hope that anything would be different this time. MUCH TO MY SURPRISE I WAS MET BY A TEAM OF SPECIALISTS AND DIAGNOSED WITH CYSTIC FIBRORIS WITHIN 10 MINUTES!! I STARTED CYRING AND WHEN THEY TRIED TO CONSOLE THEM I TOLD THEM THEY WERE TEARTS OF JOY!!! Finally I was believed and understood.

Sensitivities...or lack thereof

2010-10-17T18:11:00.000-07:00

Culture shows moderate mucoid PA (normal) and Achromobacter which wasnt there last time but seems to be there more (my theory anyway) when I'm sick.

PA is susc to colistin, zosyn, and piperacillin
AB is susc to ceftazimide, meropenem, and piperacillin

Germ Factories started early & Clinic Tracking

2010-10-17T18:08:00.000-07:00

This year in MI the germ factories seem to have started early and whatever has been going around has left a number of people with pneumonia. We were not overlooked. After all three of us had a cold I was just starting to feel better but had a cough hanging on and then WHAMMO I started feeling worse. I was wondering if my lungs were going down hill when Lillian came down with a fever and I knew we had.....round two. Lillian had a fever for 6 days and ended up needing antibiotics. The bugs in my lungs went wild and I was very productive and increased cough.

After checking my last culture showed up sensitive to cipro which I havent used in a few years and for the record I detest and nromally doesnt work. We decided based on my numbers below that something had to be done so we decided to give cipro a go and change our minds if needed based on the culture and how I did.

7Oct2010 FVC94 (down 33) FEV1 88 (down 26) FEV25-75 82 (down20)
Notes: I'd been sick for 3 weeks. I've fallen off the anti-inflammatory eating but am still taking 5LAC, Lauricidin, and doing green smoothies. New clinic new machine reference numbers so need to start tracking volumes. FVC3.81 FEV1 3.00 FEV25-75 2.94

23Apr2010 FVC 127 FEV1 114 (up 14% WOW) FEV25-75 102 (up 12% WOW)

Notes: this is especially fantastic given my allergies are running wild and I have seen a drop in my peak flow the past few days from it. I normally write down my PEF (peak flow) but he pointed out that mine was off the chart this time, my Peak flow was 11.82 which equates to 150 L/min higher than two months ago i.e. the little plastic things we use measures in L/min.

Clinic Notes: Discussed recent treatment for candida. Fatigue, chronic pain, pleural pain, all gone. Lung functions are the best on record and it is after no drugs or steroids where as the 108% last year was after serious steroids. Please see here for all details:

18Feb2010 FVC 110 FEV1 100 (down 4% more-total8%) FEV25-75 90 (up 2%)
Clinic Notes: This was post IV's (stopped Christmas Eve) and 2 rounds prednisone totaling 5 weeks (1st round stopped New Years day and 2nd round was 3 weeks in January). Infection is gone but still having chronic pain on left side when breathing, especially deep breathing, still intermitten pleurisy, still fatigued and not feeling right, feel like I do right before I get a bleed. Discussed potentially entering chronic pain phase of CF (I do not accept this). Also started drinking mucomyst N-acetylcysteine since last visit so reported good results in gastro area from this, no large effect noted on the lungs. Discussed going to CA to consult with Dr.Moss on inflammation and also discussed pursuing testing for candida with family doctor.

**oops missed a couple, need to dig around and find those**

3May2009 FVC 118 FEV1 104 (down 4%) FEV25-75% 88 (up 1%)

Clinic Notes: re-check post steroids and pre-pregnancy (attempt). Everything looks great, feeling good, allergies are problematic and doc did say that my theory on my allergic reactions having residual inflammatory effect on my lungs (which I did another week steroids for) was very possible. His pregnancy recommendations are to be vigilent with physiotherapy especially hit it hard in 2nd tri' to get ready for 3rd when lungs are most compromised and there is the biggest risk.

March2009: FVC FEV1 108 FEV25-75% 87
Clinic Notes: Recheck after end of steroids, feeling good. Best FEV1 ever!

29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.

15Dec2008 FEV1 103 FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 82

4Dec2007: FVC 99 FEV1 91 FEV25-75% 77

Candida Dr. Discussion

2010-04-23T03:31:00.000-07:00

So given my PFT's the doctor obviously wanted to know what I had been doing. The conversation went something like this. I started out with an 'ok I will tell you and I realize this is fringe and not at all main stream CF but.....recap of ca visit....recap of FNP visit and her thoughts on candida....recap on all test outcomes....recap on what measures I had taken and how I now felt.

He asked some questions. He was very interested in DramaMama's (Mandy's) insulin experience so I am going to get some follow up info on that. He said we only have just scratched the surface of knowing about the body etc etc he's glad to see me feeling so much better, yada yada, he's glad they didnt miss anything as far as what Dr. Moss checked (my dr is Stanford alum and knew Dr. Moss).

I told him that I realized this was not main stream and right now its an isolated finding and could be coincidental (from how I feel internally I can tell its not but I"m talking scientifically) or it could be from my one month of colistin but that I hoped two years from now to be sitting there still doing just as well and perhaps by then someone will have done some more lookign into it or it will get some additional interest from them based on my 'experiment'. He was overall very pleasant, very pleased, interested, wanted a bit of information additionally, but skeptical---of course. He said he liked to listen and was very interested and impressed.

Candida Treatment & Clinical Outcomes

2010-04-23T03:13:00.000-07:00

This is what I have done to treat candida. In addition I have added in trying to take some measures to alter the acidity of my body. In addition to the items listed below I have been drinking green smoothies every day and drinking water with lemon juice, braggs whole apple cider vinegar, or grape fruit seed extract in it.

The convoluted treatment schedule I followed (PS I would do this all different now):
diflucan started ~March 6th
started taking caprylic acid & garlic ~ March 12th
dabbling in reducing sugar in diet ~ March 15th
added in oregano oil and pau'd'arco tea ~ March 19th
truly started sticking to a MEVY diet~March 29th
fell off the wagon a bit with sugar splurge April 13-16th
rededicated to MEVY for two more weeks April 17th
NOte: Diflucan was 150mg every day from March 6th through April 21st (6.5weeks) then I am finishing up with every other day until 5May (Note: it was supposed to be 200mg but I already had the 150's and it RX as 4 weeks then 2 of every other day. I kept fubbing my dietary attempts and wanted the diflucan to coincide so I extended it though until I wrote this I didnt realize by how much, oops)

So its worth noting that I have talked about my previous die off reactions in other posts. I was extremely affected by both it being a bad time of year for me (March) and the die off reaction. I was having hemoptysis off and on for 3 days around april 9-11th. Afterward I got very productive and short of breath, if I hadnt been in the middle of my 'experiment' and felt like that normally I would have tossed in the towel and headed off to see the doctor. BOY am I glad I waited it out. It is also worth noting that I did not feel well at all until last week about April 16th and that is why I decided to rededicate very stringently for two weeks because I realized despite adding back in some sugar whcih made me sleepy I was feeling better overall than I had in a long time. Before that I had one sort of die off reaction after another or I was just fatigued in general.

Numbers speak louder than words:

FEV1 114% which is 14% up from 2 months ago and the ONLY thing different is the candida treatment, I even stopped taking NAC so I could not confound the results with a double variable.

FEV25-75 102% which is up 12% from 2 months ago.

Disclaimer: I actually did take colistin for the first time in March, I did not notice a huge difference when I was on it but I also had a hideous cold, bad time of year, hemoptysis, die off reactions etc. My being SOB and productive extended well beyond when I was done with that as did my pain and pleurisy so I do not believe colistin has anything to do with the results. Additionally I was showing no signs of infection when I started it which was shortly after IV's with zosyn and the doctor confirming after that my lungs sounded completely clear and I was not getting any 'goo' up at all.

Additionally, my chronic pain in my left side is gone, pleural pain gone, hemoptysis gone, mucous production greatly reduced, my tongue is pinker than I ever remember and the 'sores' on the side where it started looking crazy after this treatment was begun are GONE, and I have more energy than I remember having in a long, long, long time.....like years.

Compliance Comparison

2010-04-22T18:17:00.000-07:00

I'd like to point out that every year since Jan 2007 I have had plans on how I would further improve my compliance and do more to get healthier and while I realize alot of people can work their @sses off just to hold ground or loose more slowly I think what I have accomplished says alot about compliance for those who may still think, as I once did that they are 'compliant-ish' and thats enough.

Numbers speak louder than words so here is my comparison:

4Dec2007:   FVC 99     FEV1 91    FEV25-75 77
23Apr2010 FVC 127   FEV1 114   Fev25-75 102
Summary        up28%       up 23%        up 25%

Clinic History

2010-04-22T18:14:00.000-07:00

23Apr2010 FVC 127 FEV1 114 (up 14% WOW) FEV25-75 102 (up 12% WOW)

Notes: this is especially fantastic given my allergies are running wild and I have seen a drop in my peak flow the past few days from it. I normally write down my PEF (peak flow) but he pointed out that mine was off the chart this time, my Peak flow was 11.82 which equates to 150 L/min higher than two months ago i.e. the little plastic things we use measures in L/min.

Clinic Notes: Discussed recent treatment for candida. Fatigue, chronic pain, pleural pain, all gone. Lung functions are the best on record and it is after no drugs or steroids where as the 108% last year was after serious steroids. Please see here for all details:

18Feb2010 FVC 110 FEV1 100 (down 4% more-total8%) FEV25-75 90 (up 2%)

Clinic Notes: This was post IV's (stopped Christmas Eve) and 2 rounds prednisone totaling 5 weeks (1st round stopped New Years day and 2nd round was 3 weeks in January). Infection is gone but still having chronic pain on left side when breathing, especially deep breathing, still intermitten pleurisy, still fatigued and not feeling right, feel like I do right before I get a bleed. Discussed potentially entering chronic pain phase of CF (I do not accept this). Also started drinking mucomyst N-acetylcysteine since last visit so reported good results in gastro area from this, no large effect noted on the lungs. Discussed going to CA to consult with Dr.Moss on inflammation and also discussed pursuing testing for candida with family doctor.

**oops missed a couple, need to dig around and find those**

3May2009 FVC 118 FEV1 104 (down 4%) FEV25-75% 88 (up 1%)

Clinic Notes: re-check post steroids and pre-pregnancy (attempt). Everything looks great, feeling good, allergies are problematic and doc did say that my theory on my allergic reactions having residual inflammatory effect on my lungs (which I did another week steroids for) was very possible. His pregnancy recommendations are to be vigilent with physiotherapy especially hit it hard in 2nd tri' to get ready for 3rd when lungs are most compromised and there is the biggest risk.

March2009: FVC FEV1 108 FEV25-75% 87
Clinic Notes: Recheck after end of steroids, feeling good. Best FEV1 ever!

29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.

15Dec2008 FEV1 103 FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 82

4Dec2007: FVC 99 FEV1 91 FEV25-75% 77

Candida Cleansing Symptoms? (TMI WARNING)

2010-04-03T06:20:00.000-07:00

So some strange things I have noticed since starting this. I am not joking way way way TMI so you have been warned.

Ok on my tongue, I mentioned before there are spots on the side that are perfectly pink like a kids tongue and they are surrounded by a thicker white ring. These spots still remain and are not sore. Though the spots, interestingly, do change in size and shape over time. I have never seen anything like this before. I read of one lady doing detox and she said she got sores and stuff all over the insider her mouth and I wonder if this is like that? The only time I have ever had anything like this is when I had a bad flu and I got sores on the inside of my mouth and the doctor at the time said it was viral and they would clear up with the flu and they did. I have been drinking a TON of green smoothies with various greens that are supposed to be excellent for binding to toxins that normally lay in our body a long time or forever such as heavy metals along others. I wonder if the cilantro and dandelion greens have anything to do with this in a cleansing way. Anyway, if nothing else it is interesting and worth noting incase someone else tries this.

Ok now for the really gross stuff! #2 discussed in detail!

The first thing I noticed that was really strange in my poop was that there was small white particulate matter floating in the toilet all over. It is there frequently, especially with larger BM's. I havent been able to think of how to describe this and finally I settled on dandruff it looks like really bad dandruff in the toilet and you can see some of it floating up out of the 'movement'. Then, yesterday, when showing my friend the spit test I previously posted on it 'clicked' and I realized the white stuff looked ALOT like the stuff that was floating in my glass after the spit test. I wonder if the dandruff is candida that is being removed from my system?

The next weird #2 thing is what I believe to be mucous related. I have NEVER been able to see mucous in my stool like they say many cf'ers have, ever. Part of that may be because I spit out most of my mucous. Lately however I have had what looks like mucous sheaths in my stool, it will be bound around a larger BM and look like the BM has wings almost as it floats all around. With smaller BM's they will actually all be tied together by this long string of stuff. Yesterday, for the first time I had a movement in which just a huge piece of that stuff came out.

Now I can assure you, since I dont swallow my mucous, that this is not swallowed mucous. It looks like really thin translucent chicken skin, it is white but its translucent and moves around in the water so you can see it is thin. The only thing I can think of is I did dry skin brushing a few times which says it will move mucous from your sytem but I am hesitant to believe. More later

Candida Die Off - Take Three!

2010-04-03T06:06:00.000-07:00

So my first die-off reaction was when I first started taking diflucan, I didnt reckognize it at the time but I was on perhaps day 3 of my diflucan and was traveling to San Francisco and I hurt so much, every joint, I was warm but I dont think feverish, I was so tired, and I had bouts of heaving and nauseau in addition to being VERY SOB and some hemoptysis.

Then after getting home I was very tired, and very very productive, I couldnt keep my eyes open it seemed my body was forcing me to rest. I was again very short of breath and it felt like stuff just kept coming. I basically felt like I had a cold but worse and again my joints hurt. Its not like a cold where its continually increasing then continually decreasing it is more intermittent.

My third bout is right now and it started on the 6th day of the MEVY diet with absolutely no cheating. MEVY is meat, eggs, veggies, and yogurt (plain unsweetened). I have a headache, my joints hurt for the evening last night but not horrible like before and it wasnt all of them. Mostly I feel week and woozey and then when I exert myself I get sweat/clamy like with a low blood sugar but my blood sugar, surprisingly given what I am eating, is not low. I am pretty sure this is a combination of another small round of die-off but also alot ot do with my body getting used to making energy differently since I am not giving it anything quick i.e. carbs to feed off of.

My Take on Candida in CF Community

2010-03-30T07:05:00.000-07:00

So here, in a non-elequent nut shell is my take on candida in the CF community.

The reason why I have been posting extensively on my blog and on the board about candida is because I think it IS common. Mandy (dramamama) is the one that first mentioned it to me but I didnt 'get it' until just recently when I had the need to I supposed because things were getting worse and I was reading more and searching for answers.

I believe that it is VERY common in CF'ers, if you look at what the typical CF'er has to put in their body it just makes so much sense. If you look at common side effects: pain, inflammation, allergies, and anxiety/depression.....hello all typical things in CF as well. I believe candida symptoms, just like allergies, are easy to attribute to typical progression of CF.

Of course right now I have nothing to back this up. My hope is that by talking about it more people will, over time, be interested in having it checked out. So far we have had two CF'ers on the boards start treatment for it in addition to me, in just a short time.

I really think this has the potential to be huge in our community. Now, that being said, finding a doctor who agrees may not be. Not all CF'ers are going to have it (thankfully) of course but with high calories diets often be supplemented by sugary drinks and lots of junk food + antibiotics repeatedly.....and sometimes throw in steroids plus for most CF women birth control pills=a perfect recipe for candida overgrowth. If it is going to occur in anyone, I think CF'ers are one of the highest risk populations next to AIDS/HIV, cancer, etc.

Interestingly enough there are studies out there, I havent looked up full articles yet, showing candida is a problem in neonatal CF'ers and it can cause death. I am hoping to find that SOMEONE is looking at this in adult, otherwise it may IMO be a big blind spot in our treatment. Much like the change from high calorie whatever junk you can get in to get your calories to the progression of recommending mediterranean style diets hopefully it WILL slowly be reckognized.

Just my 0.02.

Consultation Recommendations

2010-03-20T07:50:00.000-07:00

So I got the final report on my visit to see Dr. Moss at Stanford. Here are the highlights:

dx2001 due to history and sweat test 56

1993 tests were 35-50

P67L E60X AND.....I didnt know this M470V polymorphism

M470V "which has been described in the literature as potentially contributing to CF phenotype in certain circumstances". Whatever that means, will have to look it up.

Current concerns: noted inflammation past two years and recurrent use steroids which seem to be diminishing in efficacy. Her major concern bas been the use of systemic corticosteroids to treat flares of apparent ABPA, as well as several allergic injection reactions.

Notes:

multiple allergens, immunotherapy and xolair in use.

Xolair effectiveness demonstrated by increase in symptoms 4 days after missing an injection.

Sleep test normal.

Bronchoscopy and lavage showed only achromabacter though PA cultured periodically too.

Positive pancreatitis dx in childhood. I DIDNT KNOW THIS EITHER---I always said I was sure that was what it was but they must have sent him something where it was positive!

gastroesophogeal reflux treated with prevacid

Then they went over a 'review of systems and physical exam'

this part strikes me as funny I had to read it a couple times...

Neurologic: Grossly intact

ha ha is that the most horrid way to describe intelligence ever? It talks about in other sections about me being a good historian, pleasant, alert, a chemist with an active life, blabbedy blah but too funny to describe the overall marker that way.

ok now the good part

Impressions and Recommendations:

History and tests available to me are consistent with ABPA, although she has not had aspergillus ilsoated from sputum or bronchial lavage. This is not a fact atht woudl by any means exclude the diagnosis of ABPA, nor woudl a positive cluture indicate ABPA w/o other elements that are present in her case, icnluding wheezing and rop in pulmonary funcation, as well as bronchiectasis, elevated IgE and speciif cIgE and IgG antibodies to aspergillus.

I recommend that she continue on her xolair therapy. With regard to monitoring her IgE, if the immunoCAP methodology is used, this has been showen to be non interfering in measurement of total IgE (RG Hamilton, JACI 2006;117:759-66). However, otehr methodologies could cause a problem. We will obtain total IgE today as well as aspergillus specific IgE and aspergillus precipitins to check her serological status at present.

Therapeutically, I recommend alternatives to current pattern of frequent steroid usage. I would recommend starting on a triazole antifungal, probably voriconazole is to be preferred because she is on prevacid for GERD and itraconazole is poorly absorbed unless the stomach is acidic. Therapeutic dose for voriconazole is 1-6mcg/mL steady state trough level. I also recommend that she increase her N-Acetyl cysteine from 600mg BID to 900mg TID (woohoo I'd been hinting about this to no avail since my doc always uses 600mg BID).

I did mention another option is amphotericin nebulization, but given number therapies and time constraint it would be burdensome.

We also obtained a sputum for fungal cultureas it is possible that aspergillus may be isolated. If a routine bacterial culture is sent, then overgrowth may prevent detection of aspergillus.

Candida Tongue?

2010-03-17T02:15:00.000-07:00

So a strange new 'symptom' that I believe is related to my candida eviction program. I noticed while using my tongue scraper (another thing I started doing last year which in the 'hindsight is 20/20' mindset makes me go DUH should have thought about this). My tongue is white, now I didnt use to realize it was white but it is and now that some of the white is leaving I can tell it used to be much more white.

So, as for the development, I noticed on the side of my tongue I had a spot that was completely pink, bright pink actually and a bit tender but not like when you rubbed it so its hard to describe. All around the pink area which was about the size of a large pea was a very white thick raised area so it almost was like a sore on the side of my tongue. Now, two days later, it is not tender but the area that is free from white is larger and more of an abnormal shape and it still has a very white/thicker looking area surrounding it.

I did read in one of the testimonials on a web site about a woman who said she got sores all on the inside of her mouth when going through detox and I found that strange but maybe this is that? I dont know just documenting it incase it is valuable later.

Candida - Upswing Day

2010-03-16T18:52:00.001-07:00

Yesterday I ended the day feeling pretty well, having done just hte coconut milk kefir and the diflucan iwthout additional supplements. I also did dry skin brushing and another enema last night to just make sure I didnt start getting toxin overload. Today was a GREAT day, no nausea or fatigue despite sparse sleep last night.

I have also seen a HUGE upswing in the mucous productivity, this is NOT my nromal stuff or pattern of getting stuff out. I do not believe it is exacerbation related either. Iwill continue monitoring to evaluate but I have a runny drippy nose that is all clear so not a cold/flu and not normal for me just alot extra mucous and drainage. I believe it is all part of my process.

Candida - What are the Symptoms?

2010-03-15T18:39:00.000-07:00

From my reading it seems excess of candida causes three main types problems:
gastrointestinal and urinary tract
allergic reactions
emotional / mental difficulties

I am just amazed at how much these top symptoms, in purple in honor of CF ;-)....SOUND like CF. Now I am not saying correlation means causation here. Meaning just because so many cf'ers HAVE these symptoms does not mean they HAVE candida overgrowth nor am I saying just because we all use tons of antibiotics, steroids, and many use hormonal birth control means we HAVE to have overgrowth either. However, isnt it often the case that we just have to expect a progressive worsening over time of these symptoms? What if some of that worsening has to do with candida toxins and overgrowth and NOT with normal degeneration of condition?

I will list more of why I questioned my 'progression' later but I just wanted to post these common symtoms from my reading. And yes, I realize the list is so extensive that everyone has some things on this list, CF or not.

Common Symptoms reportedly include:
abdominal gas and acid reflux
chemical sensitivity
sinus inflammation
persistent cough
constipation/indigestion/diarrhea
sore throat
chronic pain
athlete's foot/jock itch/yeast infection/thrush/vaginitis
cognitive impairment/hyperactivity
cravings for alcohol/carbs/sweets
depression/irritability/anxiety
earaches eczema/itchy skin
erectile dysfunction/low sex drive
excessive fatigue
headaches/migraines head fog/poor memory
pre-menstrual syndrome
rectal itching

Candida - One Week Status Report

2010-03-15T02:34:00.000-07:00

So here it is, the good, bad, ugly, and oh yeah the really really TMI. I figure if someone else is going to do this perhaps they can learn from my mistakes so I had better include full details.

For starters I did this all wrong. Maybe if someone else does this they can learn from my mistakes. What I have done, am doing, is basically what the standard treatment is but if you read books or online that deal specifically with candida you will learn alot more than 'take this pill once a day and candida away it is' which is what I see from alot medical community.

I went ahead and just started on the diflucan 150mg 7 days ago. I did not alter my diet first, I had made changes but not to the level I should have. I started before going to CA and then stayed on it thinking I would make final dietary changes when I got back. They key is that you cant errradicate the yeast if you are constantly feeding it with what you eat.

Since my yeast is high and I didnt do anything to start slowly killing it or reducing numbers and I just jumped into diflucan I am experiencing a severe die-off reaction to the point of what I would consider a 'crisis' based on what I read. So I stopped the diflucan for one day and did every home remedy I could think of that I read to help clear my system of the toxins including drinking tons of water, dry skin brushing, an *gulp* enema, thumping my thymus, drinking tea, alternating cold/hot shower, lots vitamin C, and a sea salt bath. I know some of that sounds cookey but if it would help in any way I was willing to try it.

The symptoms I experienced are way way increased mucous/cough, tight chest, short of breath, stomach upset, nauseau, intermittent joint pain, mental fog, and fatigue. All of this plus feeling like this will never end has left me pretty down in the dumps and anxious which I read can be an effect of the yeast die-off but that is kind of like playing "which came first".

On friday I tried to start the MEVY diet in addition to continuing the diflucan and it was too much for me to tolerate. I got migraine in addition to all the symptoms above I was absolutely miserable I couldnt even drive myself home from work. I decided a bit against my health that I will start the MEVY back up but not this week. I have a super important week at work and I just cant afford to not be in the game. I will start it again this friday and hopefully by monday be feeling better. Whenever I have withdrawn from sugar I get this way and I thought it was the blood sugar changes but I now believe it to be the blood sugar and the yeast die - off. Unfortunately in the mean time I have read that the die-off can be worse because you are feeding the yeast to allow them to grow and killing htem at the same time so they continue to die thus continuing the reaction. I have not read this extensively on alot sites but it does make sense.

For now my plan is to continue the diflucan, lay off the herbal supplements if I am feeling bad since they accelerate the killing of the yeast, continue with a health diet just not free from fruits grains, and try to monitor my toxicity symptoms. I am drinking green smoothies for breakfast, yogurt kefir smoothie mid morning, and having a pureed green soup for lunch in the hopes of easing my digestive woes while nourishing my body and keeping my bowels open to not allow yeast to 'sit'.

That is it, the good, bad and ugly. So far more of the bad and ugly than good, hopefully that is soon to follow. I think because of being highly allergic with CF and being highly colonize this is all going to take longer and be a bit more extreme than some other cases. Or maybe I'm just a whimp *sigh*.

Candida - Die Off or Herxheimer reaction

2010-03-13T19:03:00.000-08:00

This is the miserable part of the treatment. I'm going to detail the basics and then I will post my week 1 update.

Die-Off or Herxheimer reaction

When yeast cells are rapidly killed, a die-off (or Herxheimer reaction) occurs and metabolic by-products are released into the body. These by-products cause allergic reactions and inflammation that lead to an array of undesirable symptoms.

Generally speaking, most folks experience die-off as an exaggeration of their existing Candida-related symptoms or as a worsening of chronic health conditions. Die-off is experienced differently by each person Most folks experience die-off at some point in their recovery. There really is, however, no sure way to predict what point or to what degree one is likely to feel it.

The die-off reaction normally lasts from one day to one week and can come and go throughout the program (it is especially likely to occur during the first weeks of a new Phase of the program). However, as your body becomes stronger, your susceptibility to Candida toxins is reduced and thus so are your die-off symptoms.

The severity of an individual's symptoms depends upon the weakness of the organs most affected by Candida, the strength of your immune system, the degree of Candida infestation, and the environmental and emotional stress you are experiencing.

Common Die-Off Symptoms:
Fatigue, brain fog, gastro-intestinal distress such as nausea, gas, bloating, diarrhea or constipation, low grade fever, headache, sore throat, body itch, muscle and / or joint soreness or pain, feeling as if coming down with a flu.

Managing Die-Off Reactions
Of course, you'll want to try to prevent die-off symptoms from manifesting throughout the rest of your program. The fact is that more die-off symptoms don't necessarily indicate that you are killing more yeast, just that your eliminative organs are becoming overwhelmed. This is how die-off can become your foe instead of your friend, since overwhelming your body is not conducive to healing. A slow, gradual yeast elimination process is much healthier.

You may have to back off of or stop your anti-fungal remedies for a few days.

Lots of water to flush toxins.

Rest or you will feel worse.

If you've cut out all grains from your diet and are experiencing yeast die-off reactions, the re-introduction of a small amount (half a cereal bowl per day) of brown rice may work wonders.

Measures must be taken to encourage more frequent and complete bowel elimination.

Enema's can be an excellent way to ensure the waste is not being allowed to further ferment and release more toxins.
To deal with the symptoms and help speed up your bodies riddance of waste there is alot of talk about epsom salt or sea salt baths, doing things to rev up your lymph system and drainage, lots of vitamin C, saunas, dry skin brushing, and alot more. I will try to come back and detail this section out a bit more when I get time and am not busy trying to figure out what to do to lessen how miserable I am!!!

NOTE:

Remember, it's very important to make proper dietary changes before beginning an antifungal treatment. There are two important reasons for this, which go hand in hand.

First, if you continue feeding the yeast while taking antifungal treatments at the same time, you’re not going to make much progress, as the two actions are going to be canceling each other out.

Second, if you continue feeding the yeast while at the same time taking antifungals, you increase your chance of experiencing some pretty severe die candida die off reactions.

most of this is taken from: http://www.wholeapproach.com/newsletter/archives/2003/06_June.html
or: http://www.thecandidadiet.com/candida-die-off.htm
or: http://www.modernherbalist.com/dieoff.html

Candida Treatment - Wholistic Way

2010-03-13T18:20:00.000-08:00

So here is a snippit about some different supplements that are touted as being effective against candida candiasis or candida syndrome. I plan to start doing more reading and research but if you are eager you have a starting point.

Coconut Oil
Coconut oil is naturally anti-fungal, so it’s a perfect yeast-fighter. Eating coconut oil helps fight the yeast on the inside, and it can be used topically to relieve fungal/yeast symptoms on the outside as well. It's also anti-bacterial and anti-viral in nature, so eating it every day is an excellent boost for your immune system.

Oil of Oregano
There are a number of different phenols in Oil of Oregano; carvarcol being the most potent. Carvarcol is antiviral, antifungal, antibacterial and antiparasitic. It has been demonstrated to kill not only Candida Albicans yeasts, but also Aspergillus Mold, Staphylococcus, E. Coli, and Giardia, among other pathenogic organisms.

Clove Oil or Clove Tea
Cloves contain some of the same phenols as Oil of Oregano , namely carvarcol and thymol, among others, which are highly antifungal in nature, as well as antimicrobial, antioxidant, antiviral, and anti-inflammatory.

Cloves are one of the most potent Antifungal Herbs . *Note: there is alot info out there about grinding or crushig cloves and making tea from it so I added that

Grapefruit Seed Extract
Grapefruit seed extract is well known as a broad-spectrum antibacterial, antifungal, antiviral and antiparasitic compound.

Raw Apple Cider Vinegar
One reason that it is so effective is because of its alkaline nature. Not only can a small amount of it bring your body's pH levels back into line, it can also kill the Candida fungus that is causing the yeast infection.

Caprylic Acid
Among the many natural cures for candida, caprylic acid is one of the most commonly cited. This is a medium chain fatty acid (C8H16O2), also called octanoic acid, that is found naturally in coconut oil, palm oil, butter fat as well as in human breast milk. It is known to have anti-fungal as well as some anti-bacterial and anti-viral properties.

Garlic
As a powerful natural antiseptic, garlic can cure inflammations of the stomach and intestine, including the Candida yeast. But unlike other more powerful treatments, garlic destroys unfriendly bacteria while preserving and boosting the good bacteria in your digestive system!

Probiotic
Restoring ideal levels of gut flora is imperative for regaining health. Much of our immune function depends on these proper levels of bacteria in the gut.

Pau'D'Arco Tea
A tea made from bark of a tree. It is a potent antifungal, and is used in many parts of the world to treat Candida and other fungal infections.

Most of the little snippits are from this website: http://www.candida-cure-recipes.com/index.html
or this website: http://www.thecandidadiet.com/index.htm
or from this book: http://www.thecandidadiet.com/index.htm

Candida Plan & Research

2010-03-12T19:11:00.000-08:00

So my plan is to document my journey on this fact finding tour of mine. I do not claim to be an expert and in fact 1/2 of what I write I may later find is complete BS but hopefully some of it will be useful and I can distill it down later. Normally I try to be somewhat informed on what I write but here I will be documenting what I think, have a hunch on or have heard about and what I experience. Take it for what you will.

I do know I have a new hobby and that is researching this candida, inflammation, immune response, and even infertility because 'me thinks' they are all linked.

I hope some of my knowledgeable friends will hop on my bandwagon and help me out!!

Treating Candida - Western Way

2010-03-12T17:53:00.000-08:00

Based on my results and symptoms my FNP wanted to pursue treatment. She said to start on fluconazole 150mg once a day for 4 weeks and then every other day for two more weeks. Additionally the integrated medicine book that she made a copy of for me mentioned the benefit of grape fruit seed extract, I will detail that in the next post talking about the wholistic treatment of candida.

My FNP has her foot in both worlds so to speak so she tries to integrate alternative and traditional treatments which I find makes her very open to ideas but also cautious which is good. There is an expert in the area for all things alternative but no insurance accepted and my insurance wont reimburse since they are out of network. Oh the fun.

Candida Test Results

2010-03-12T17:19:00.000-08:00

So they tested my IgG, IgM, and IgA. Normal is 0-1.0 and mine were 1.3, 1.8, & 2.0

I have to get some additional clarification on my stool culture because it lists:
no negative gram negative flora
rare candida
no (then it lists alot of E.Coli, shigella and others you dont want)

When I was on the phone I thought the nurse said it looked ok becuase it HAD the normal, I find the complete lack of normal flora suspicious. There are 3 main gut flora an imbalance is a bad thing, a complete lack is amazingly bad.

I am also not sure if the rare candida means only a few or a rare species they couldnt ID other than albicans.
If rare means only a few and no normal flora truly means none then I wonder if the sample was bad. Anyway I will talk with my FNP next week.

Off to see the wizard....oh nope just another doctor

2010-03-08T02:50:00.000-08:00

Well I have to say I am less than enthusiastic this morning about working all day and then hopping on a plane to fly all way across the country to see a doctor. What was I thinking? I know I should do it, I know I WILL do it, but right now I dont want to do it. I am just starting to get over this cold I am tired and cranky.

I dont even have any specific questions to ask. Hmm...should probably get on that.

Diagnostic Tests for Candida

2010-03-03T17:11:00.000-08:00

I have found some more specific information for ordering lab tests for suspected candida. This is a physician reference so if you want some interpretation I will see what I can do.
http://www.arupconsult.com/Topics/Yeasts.html

I meant to get a copy of my lab orders but I didn't, I will ask for a copy once I get the results so I can post how it should be ordered since my doctor and lab had a hard time figuring it out.

Yeasts are capable of causing a spectrum of human diseases that range from colonization to uniformly fatal disease.

•Invasive fungal disease occurs in at-risk patient populations

◦Immunocompromised patients

◦Patients on immunomodulatory therapy

◦Patients with indwelling devices

◦Critically ill patients

•Species that most likely cause disease include:

◦Yeasts – Cryptococcus neoformans, Candida spp

•Manifestations of infection may occur in one or more body sites

(1,3)-Beta-D-Glucan (Fungitell®) 2002434

Method: Colorimetric Assay Detect (1-3) Beta-D glucan in serum samples when a fungal infection is suspected.Aid in diagnosis of invasive Candida infections. Use in conjunction with other diagnostic procedures.Does not detect fungal species which produce very low levels of (1-3) Beta-D glucan (eg, Cryptococcus)

Additionally a stool sample is recommended to see if you have an imbalance in good bacteria or an excessive overgrowth of candida.

Supposedly there is a urine test you can get as an additional tool but my doctor, my hospital, and their consultant in the lab at mayo haven't been able to figure it out? Still looking into this.

Thus It IS Time........

2010-02-22T02:35:00.000-08:00

To get serious about the food I am taking in. I have gained back almost 5lbs of my precious 15lb loss. I feel better after just two days of watching not completely but a bit my food intake. I have 10 more lbs I need to lose for optimal weight range, diabetes minimization, and lung functioning. After some more research I am pretty positive I have candiasis. The green smoothies I have been drinking HAVE been wonderful. Oh yeah and that diabetes thing? Last week my fasting blood sugar random check was 122 YIKES I was freaked out about that and this week it is 158 I did eat junk while laying in bed after not making time for an appropriate dinner. I dont normally see 158 during the day so this is bad bad BAD. Time to get serious.

Updates to follow.

Oh and after a lab snafu last week I should be going to get my lab tests for candiasis this week, I have tried not to change much so they would still hold true but I have been drinking the green smoothies for a couple weeks which really get digestive/elimination system working sooooo not sure how that will pan out on the fecal test.

Candida-spit test-lab test-doctor opinion

2010-02-18T18:00:00.000-08:00

Ok so an update. I did the spit test below and mine looked exactly like the picture below. Then because I am a scientist and skeptic at heart I had hubby do it and his spit immediately spread out across the surface of the water and then dissolved into the water within 10 minutes or so. Thus hubby was my negative control. I did not get mucous in the cup but I do reckognize that a CF'ers spit could be different perhaps because of CF and not candida. I made an appointment with my doctor and went yesterday, our discussion is below.

Here's a simple test you can do at home to determine whether you have Candida. (ok I have no idea how valid this is I am just reposting from here:http://www.thecandidadiet.com/testingforcandida.htm)

1. When you get up in the morning, and before you brush your teeth, eat or drink anything, fill a glass with bottled water at room temperature.
2. Spit some saliva gently into the glass.
3. Come back every 20 minutes for the next hour and check for some of these tell-tale signs of Candida:

- 'Strings' coming down through the water from the saliva at the top
- Cloudy saliva sitting at the bottom of the glass
- Opaque specks of saliva suspended in the water

My family doctor is a nurse practicioner who also practices in wholistic medicine I am unsure on her background but she always wears a turbans on her head. She was interested in what I had to say and admitted it is HIGHLY plausible I may have to battle candida because of extensive antibiotic and steroid use, throw in my fertility treatments and GERD and you have yourself a perfect recipe for candidiasis. Not saying i hvae it just that I have alot risk factors.

She said we could just try the treatment and see if it made a difference in how I felt or go through the expense of testing, I chose testing. She warned me NOT to change my diet before testing so FYI. She said about 6 years ago the 'fad' was that everyone had candiasis and now the gluten fad is in and just starting up is the histamine sensitivity fad. She talked about some DO's we have in our area she was disapointed with because they seem to follow the fads and 'everyone' will have this, that or the other. This is part of the reason I like her because she seems well balanced between Eastern and Western medicine.

She warned me that the problem with diagnosing alot of inflammation related items among others (think ABPA diagnosis) is that there is a wide range. So essentially if my numbers are sky high (which I think they will be) you can be pretty sure of candida, if they are super low you can pretty much rule it out, anywhere in the middle and its hard to say. One other thing she mentioned is if my numbers for IGg,b,a were previously checked by my CF doctor we could get a good feel for if they had dramatically escalated over time but were still within a high normal range that may be indicative.

SO tomorrow I will get the following tests done: (I added in the mays)

Blood Test

An Anti-Candida Antibodies test. There are 3 antibodies that should be tested to measure your immune system's response to Candida - IgG, IgA, and IgM. High levels of these antibodies MAY indicate that an overgrowth of Candida is present.

Stool Analysis
Your stool is directly analysed for levels of yeast, pathogenic bacteria and friendly bacteria.

Urine Tartaric Acid Test
This test detects tartaric acid - a waste product of Candida yeast overgrowth. An elevated test MAY mean an overgrowth of Candida.

A number of years ago a friend of mine was having alot stomach problems. She cultured H.pylori and despite antibiotics was continuing to have alot of problems. They analyzed her stool and found high levels of yeast and only 2/3 main 'good' bacteria and high acid. They also found she was allergic to sugar and milk. She has been doing a MELY rotational diet for years and does really well.

Reading Update

2010-02-18T03:30:00.000-08:00

Reading:
Bondage Breaker & Study Guide
Lamb
Power Praying Wife
Green For Life
Smoothie Revolution
The Greatest Words Ever Spoken

Next Up:
Purpose Driven Life - Warren
Guerrilla Marketing in 3o Days
Citizen Soldiers: The U.S. Army form the Normandy Beaches to the Bulge to the Surrender

Read:
Hiding Place -Corrie Ten Boom
Band of Brothers: E Company, 506th Regiment, 101st Airborne from Normandy to.....

Harriete Tubman: Conductor on the Underground Railroad
Taming the Nueces Strip - Durham
The War Journal of Major Damon "Rocky" Gause-Ambrose
5 Love Languages - Gray
Power Praying Wife - Omartin
Dare to Discipline - Dobson
123 Magic
When Bad Things happen to Good People - Kuhner
Scientist in the Crib--Science meets how babies brains work--this just interests me
Happiest Toddler on the Block
Millionaire Next Door - Stanley
Love Dare
Home Safe Home (alternatives to toxic laden household products)

'One of these Days'
Skinny Bitch in the Kitchen (wholistic eating)
Omnivore's Dilemma
Power Spoken Word
Power Spoken Tongue
Sacred Marriage
Butekyo Breathing Shut your Mouth
The surrendered Wife-Neumans
"Better' - Atu Guande
Woman Power - Schlessinger
Priceless - Ramsey
Proper Care and Feeding Marriage - Schlessinger
QBQ - Miller
Raising Girls - Dobson
DNA of relationships-

Gene action could be key to diabetes prevention, cure

2010-02-17T16:40:00.000-08:00

Gene action could be key to diabetes prevention, cure

By Liz Jones Comment
Forward

PFKFB3, a gene often studied by cancer researchers, has been linked to the metabolic inflammation that leads to diabetes. And understanding how it works means scientists could find ways to prevent or cure diabetes, according to a study by Texas AgriLife Research appearing in the Journal of Biological Chemistry.

Dr. Chaodong Wu, AgriLife Research nutrition and food scientist at Texas A&M, worked with a team of researchers to identify the gene as a regulator for metabolism, which plays a vital role in the development of diabetes. Wu, who co-authored the study with the University of Minnesota's Dr. Yuqing Hou, says this information will help the team collaborate with nutritionists to identify what changes or supplements in a diet will activate the gene to prevent or stop the progression of diabetes.

Wu noted that while it is a major health concern in the U.S., obesity does not necessarily cause diabetes to develop. Rather, metabolic inflammation causes or exacerbates the disease, prompting the team to take a look at PFKFB3 to determine how the inflammation begins. "First we will need to identify what effective compounds will trigger the gene to regulate metabolism," Wu said. "Then we need to determine what combinations within foods are more effective."

Full Article: http://www.jbc.org/content/early/2009/11/30/jbc.M109.058446.full.pdf

Epigenetics: We are what our mother's eat?

2010-02-17T16:37:00.000-08:00

Full story: http://www.washingtonpost.com/wp-dyn/content/article/2009/12/14/AR2009121402894.html

Two mice. One weighs 20 grams and has brown fur. The other is a hefty 60 grams with yellow fur and is prone to diabetes and cancer. They're identical twins, with identical DNA.

What is epigenetics? So what accounts for the differences?

It turns out that their varying traits are controlled by a mediator between nature and nurture known as epigenetics. A group of molecules that sit atop our DNA, the epigenome (which means "above the genome") tells genes when to turn on and off. Duke University's Randy Jirtle made one of the mice brown and one yellow by altering their epigenetics in utero through diet. The mother of the brown, thin mouse was given a dietary supplement of folic acid, vitamin B12 and other nutrients while pregnant, and the mother of the obese mouse was not. (Though the mice had different mothers, they're genetically identical as a result of inbreeding.) The supplement "turned off" the agouti gene, which gives mice yellow coats and insatiable appetites.

Candida

2010-02-12T19:09:00.000-08:00

So I'm racking my brain trying to figure out why the sudden increse in inflammation lately for me. I'm not one to just take 'oh you are getting worse' lying down. I am a scientist at heart and am always looking for the 'big why'. I enjoy testing hypothesis and doing research so I'm the perfect person to have CF I suppose. Someone suggested candida overgrowth as a possible suspect.

Here is a good site I found: http://www.thecandidadiet.com/index.htm

My general doctor is a FNP with other certifications in homeopathic medicine so I have no doubt she will do the testing for me. I have a CF appt on thursday and an ENT appointment on friday. Hopefully I can get in to her the following week since next week is so full with work stuff and appointments.

In a nutshell 8 years ago I had allergy test done and I was allergic to like 6 things I had it repeated 3 years ago by the SAME doctor and it was 51/51. I took allergy shots at maintenance dose for 1.5 years and suddenly last year reacted to my allergy shots badly 3 times and now cant take a normal dose. I now have sinus headaches since the summer time all the TIME despite more use on nasal sprays, sinus rinses, dehumidifers, humidifiers, air purifiers, you name it. Hence the ENT appointment to rule polyps or something out but I get a pretty easy rinse so we shall see. I also see huge changes when I do elimination diets with processed foods. I have alot of intestinal issues despite being PS I get very gassy too. I am getting headaches and migraines all the TIME lately despite not being stressed, migraines in addition to the sinus headaches. I am also so so so tired in the mornings I have such a hard time getting up and around. I have invested in a tongue scraper my tongue is always coated white. I have been having a really hard time with my hormones since having my daughter and an even harder time with my hormones and emotions since doing fertility treatments again this year.

All of these things were before I knew anything about candida and then I read about it based on a recommendation from dramama aka Mandy and whammo it hits me like a load of bricks. This happens the same week a frined of mine goes to the BORN clinic. I look up info on BORN and again whammo like a load of bricks so many things make sense!

On to look at some of the info on candida.

Now lets see common things it can cause or that will worse (bold ones I have):

•Allergies and allergy symptoms, chemical sensitivities.

•Anxiety, Hyperactivity, Attention Deficit Disorder.

•Avoiding food helps to alleviate symptoms.

•Chronic inflammation and irritation of the eye and conjunctivae.

•Diarrhea, chronic gas, and abdominal cramps alleviated by bowel movements, Irritable Bowel Syndrome.

•Extreme lethargy.

•Eye fatigue.

•Facial rash.

•Frequent urination.

•Frequent yeast infections in women.

•High sugar or mold foods drastically increase symptoms.

•Hives.

•Inflammation of the hair follicles (candidiasis folliculitis) of various parts of the body (feet, legs, arms).

•Lactose intolerance.

•Muscle weakness and bone pain.

•Obsessive Compulsive Disorder.

•Panic attacks.

•Psoriasis/seborrheic dermatitis/dandruff, dry, itchy skin.

•Rectal itching.

•Sinus problems.

•Swollen lips/face.

•Symptoms worse after waking.

•White tongue and a white coating.

Abdominal pain - sometimes confused with IBS

Fatigue - you struggle to get up in the mornings

Joint pain - sometimes confused with arthritis

Weight gain - very resistant to dieting

Fungus - on your fingernails, or athlete's foot

Hmmm and I took a little quiz thing about your risk factors and got 18/20 I didnt say yes to #3 though part of the reason I am looking at all of this is something just feels 'off' about my body for the past year or so something is not right and it started back 2 years ago when I left my original CF clinic over changes in my health.

1. Have you taken repeated or prolonged courses of antibacterial drugs?

2. Have you been bothered by recurrent vaginal, prostate or urinary infections? 3

3. Do you feel "sick all over," yet the cause hasn't been found? 2

4. Are you bothered by hormone disturbances, including PMS, menstrual irregularities, sexual dysfunction, sugar craving, low body temperature or fatigue? 2

5. Are you unusually sensitive to tobacco smoke, perfumes, colognes and other chemical odors? 2

6. Are you bothered by memory or concentration problems? Do you sometimes feel "spaced out"? 2

7. Have you taken prolonged courses of prednisone or other steroids; or have you taken "the pill" for more than 3 years? 2

8. Do some foods disagree with you or trigger your symptoms? 1

9. Do you suffer with constipation, diarrhea, bloating or abdominal pain? 1

10. Does your skin itch, tingle or burn; or is it unusually dry; or are you bothered by rashes? 1

BORN Clinic

2010-02-12T02:20:00.000-08:00

I had been thinking about going to the BORN clinic for hormonal reasons but when I found out the extent of what they do I was very interested. They basically combine western and eastern medicine and to a preventative holistic care program. They do a hormone/vitamin/allergy/inflammation testing thing I am VERY interested in. Problem today I found out they dont take insurance--hopefully I can submit claims for reimbursement we shall see.

I will be calling them today if I get a chance to break away from work to find out more details. Anyway while looking over their site I found the 1st testimony below and it kind of 'sealed the deal' at least on calling. Also the fact that my friend that just had the testing was told that she has scary low vitamin D levels (sound familiar anyone) that she has candida in her stomach which is causing allergies and inflammation---hmmmmm. She will be put on a rotational diet and yeast elimination program in addition to more diflucan which by itself has never worked. So, are you reading this Mandy.....sounds like you are one smart cookie with your hypothesis for me!

http://www.bornclinic.com/Home/tabid/935/Default.aspx

November 10, 2009

I am 74 years old and have had COPD for over 30 years as well as allergies. I was told there was no cure—that it was a progressive disease that they would try to slow the progression and treat the symptoms.

When I came to Born Clinic, I was designated end-stage COPD and was taking prednisone, which was losing its effect and would have to be increased. I was receiving palliative care that would transfer to hospice as my condition worsened.

Since treatment at the Born Clinic, I am no longer considered end-stage. Where I only could walk slowly, I now can go at a fast pace. I have lots of energy. My exhalation has improved and the lung inflammation has immensely improved.

NOTE: I have only been coming to the Born Clinic since September 6, 2009—just over two months!

Are you taking a shower with MAC & Others?

2010-02-07T07:08:00.000-08:00

We are in process of getting a new hot water heater, ours is very old so these caught my eye. Hubby has been lobbying for a tankless water heater and I think these just pushed me over the edge! The tankless ones are more energy efficient since they are not continually heating water, they are more powerful so they heat it as it is needed.

So the below articles bring to mind a question of how hot can we heat our water with a tankless unit and since its just the water going through the pipes and not sitting in a tank how hot is ideal?

More research to come on that but here is a good article to start:.

http://homerepair.about.com/od/plumbingrepair/ss/tankless_hwh_6.htm

The three variables that have to be considered in sizing and selecting the unit include:

•The volume of water the unit is required to heat, measured as flow rate (GPM).

•The temperature of the cold water entering the unit (this varies by where in country you are)

•The desired temperature of the hot water exiting the unit.

A tankless water heater is sized by rating its temperature rise at a given GPM.

http://www.colorado.edu/news/r/50fe20a5a5376631bbad2024f89b02c0.html

50 showerheads from nine cities in seven states that included New York City, Chicago and Denver. They concluded about 30 percent of the devices harbored significant levels of Mycobacterium avium,

During the early stages of the study, the CU team tested showerheads from smaller towns and cities, many of which were using well water rather than municipal water. "We were starting to conclude that pathogen levels we detected in the showerheads were pretty boring," said Feazel, first author on the study. "Then we worked up the New York data and saw a lot of M. avium. It completely reinvigorated the study."

In Denver, one showerhead in the study with high loads of the pathogen Mycobacterium gordonae was cleaned with a bleach solution in an attempt to eradicate it, said Pace. Tests on the showerhead several months later showed the bleach treatment ironically caused a three-fold increase in M. gordonae, indicating a general resistance of mycobacteria species to chlorine.

http://www.sciencenews.org/view/generic/id/37933/title/Science_%2B_the_Public__The_Case_for_Very_Hot_Water

What DOE and other energy-conservation sites don’t point out is that 140 ºF will kill a number of potentially lethal waterborne organisms, like the ones responsible for Legionnaire’s disease and NTM, short for nontuberculous mycobacterial infections. In contrast, 120º provides a nurturing environment for such toxic microbes

What the microbiologist found: The DNA fingerprint of the bacteria responsible the woman’s lung disease “is the same as the mycobacterium in her hot water, cold water and her showerhead.”

The same essentially also occurs in home plumbing. Once piping or water heaters become infected, residual populations of germs take up permanent residence — usually in biofilms. Later, when the flow of water through plumbing is high, such as during a long shower, bits of biofilm can break loose from surfaces, seeding the water with germs. Some cells will readhere to the inside of piping — or your showerhead. Others will just fly out the faucet.

The question now: Will the risks from contaminated plumbing systems diminish if we raise water-heater temperatures back up into the 140 °F range. No test of that has yet been conducted, although Falkinham is itching to start one.

I think dairy is out

2010-02-03T18:27:00.000-08:00

just a quick note to say I will have to expand on this later but I think dairy is out or very minimal in my diet from here out. I did the only fruit/veggie/grain thing and then this week have added back in dairy. I have never been able to 'like' milk but do love yogurt cheese etc. So this week I added it back in an abundance to see if it woudl have an effect what it woudl be.......

more productive cough, from almost non productive to a thicker, always in back of your throat cough, like post nasal drainage but hard to explain. I *believe* I even feel more tight but I am also tapering from steroids.

I have always had an aversion to milk and I believe that was my body 'knowing'. We shall see I dont want to jump to conclusions but Ihonestly had 10% belief there would be any difference let alone this significant, now I will start taking it back out to test my theory.

I still have not added back in meat, rpocessed sugars etc so I can keep the effects separate.

Microlife Peak Flow Meter

2010-01-31T16:21:00.001-08:00

I was looking around at the pico and the microlife spirometer as I am considering getting one. I found this bundle kit that included the software so that I can download it to my computer. I would like to be able to see trends over time and insert notes for when I am sick etc. I have in the past used an excel sheet for my clinic FEV's and I thought this might be even handier. I am interested in trackings maller changes and seeing if I can correlate them to things in my life instead of just when I am sick. I am on the fence right now, still doing some research.

Measures peak flow and FEV1 to indicate early warning signs for impending asthmatic incidents or conditions

Automatically stores 240 readings, Automatic traffic light indicator

Doctor recommended, Meets American Thoracic Society (ATS) accuracy standards

Software Included: User-friendly and Customizable Settings, Easily chart progress and print graphs

Make personal notes of activities

http://www.amazon.com/Meter-Software-Bundle-Spirometry-Included/dp/B002ACEH28

Hmmm Headhunting Cyber style?

2010-01-30T09:10:00.000-08:00

Not sure what to think. I have had two CF websites approach me recently asking me to be involved in their site in a larger way and/or to link my blog up with their site. I do not fully agree with either site so I have a conflict there. However, being able to do something useful for other CF'ers is appealing to me. I did make it a goal to read, blog, and be more involved in health research stuff so I guess I have alot to think about. There are, of course, Pro's and Con's to each.

Opinions welcome

Oh and I STILL need to redo this blog with tags and such, if anyone knows how to get my tags to show up as a way to view posts please let me know.

One other think is how do you make those mini links to show up here?

Oh and is there an easy way to post articles here, I have some I want to post and dont know how to go about it.

Thanks

Consult with Dr. Moss

2010-01-30T06:16:00.000-08:00

I will be flying to sunny California the second week of March to have a consult with none other than Dr. Moss! I am super duper excited. They are going to work on getting my appointment set up and checking with my insurance next week but I dont anticipate any problems. Now I am off to read up on everything related to his research and anything else inflammatory related I can get my hands on!

Also cool is since I am flying literally across the country hubby says I might as well stay a couple days and enjoy the sights. I have never been away from Lillian before so that will be hard but I am sure I can find something to occupy my time.

I'll keep updating as things reveal themselves and if you have anythign for me to read let me know!

Plugging Along

2010-01-28T16:26:00.000-08:00

Last night I was going to write a brief blog commenting about getting up some more 'plug like' material. I wouldnt consider them a full plug but since I am almost completely non-productive right now and what I do get up is light yellow (yeah) and thin (double yeah) this is definately some older stuff I have dislodged and is somewhat 'pellet-like'. So hopefully the steroids, aspirin at night, ibuprofen during the day, anti-inflammatory diet, and NAC throughout the day are all helping.

Not too much to my surprise I got a call today saying that the doctor believes my X-ray from the ER this past weekend is showing plugging whcih is what would cause the pain I was having. So most likely the inflammation started, I chose to hold off on steroids, the inflammation continued holding in the mucous, then where that mucous was drying out and hanging out I started to get more and more pain and inflammation. That would make sense because the pain started in a localized area, I felt liek something was stuck after being 'beat' I could huff and dislodge some but not what it felt I needed too, then I got the intense pain. By the next day that pain went away (painkiller was needed at night) then the pain continued over the course of a week and spread out and was no longer isolated to one location. A week later to the day is when I went to the ER for a chest X-ray to make sure nothing was seriously going on since the pain got so much worse so fast and was accompanied by chest tightness (happens when I have something 'stuck' or right before a bleed).

Anyway thats my story and hopefully I will be chugging along soon instead of plugging along. I have been doing everythign right except for the excercise. The past two weeks I havent done alot from not feeling well. When on steroids I am up late, tired in the morning, cant get up early to excercise and repeat. I got a RX for ambien CR today so hopefully I can sleep and get up on time. I made a deal with hubby to kick me out of bed no matter what when my alarm goes off. An extra hour of sleep isnt worth keeping those plugs in for!

RAOK

2010-01-27T18:06:00.000-08:00

One of my goals for the new year was to do a random act of kindness per month. I said some would be small, some may be big, some I would share and some I would not. I feel that you dilute the full benefits of your RAOK by 'telling' about it if you are doing it in a way to show off which I am not and is why I am not going to tell everythign all the time. I do think it is so fun to help others and hope that by blogging about it others may want to join me in doing some RAOK and starting a ripple effect.

I will always try to post one that doesnt cost money because usually those are the best ones. Maybe I will do one of each per month.

February

Tonight I did a really fun RAOK. It was our first night of a growth group for church called Looking Up that another lady and I started it is for people dealing with chronic illnesses or supporting others who are. It was a small group and one guy came in looking to be in so much pain and he was talking softly and said he apologized but at the next group he would be a 180degree different and more up to talking. He said he had been without his neurontin for his epilepsy and his lyrica for his fibromyalgia for almost two days and would be out until saturday because of some insurance snafu's. They have no money at all, living with friends, disabled, older, etc. After the group I offered to drive to the pharmacy with him and buy him two days worth of medication. So I am going to rest easy tonight knowing that he wont have a seizure and can hopefully get a bit of sleep.

January

I paid for the couple behind me's sandwich and soup at subway......they were so cute how could I not?

I saw my neighbors garage door was up and went to put it down for her and check on her since all her lights were on and found her (100 years old) wrestling with her back door. She could not get it open because of the weather it was sort of 'stuck' and her son was coming in to town at midnight, her plan if she couldnt get the door open was to stay up waiting for him. She was so worried she would be a mess the next day or fall asleep and have him locked out. I was so happy I decided to go over there.

Prednisone Documentary

2010-01-27T03:29:00.000-08:00

never finished this post, will publish as is for now....since i'm on steroids AGAIN

Prednisone oh prednisone....where do I begin? Well you'll have to excuse my rambling because mine is coursing through my bloodstream at this very moment as well! I have also been thinking about prednisone, my use of it, and its affects alot so I greatly appreciate this post!Sandy-guess what I am doing this week besides staying away from people? ORGANIZING. Super crazy organizing, I have a project a day and I have even been blogging it because one of my friends wants me to organize her house LOL. I never put 2&2 together until I read what you wrote .My negative side effects:Well I pretty much get extremely wound up, over-react, get tense, and in a summary PMSx100. I have a very hard time sleeping, and by the 2nd day I am starving. My positive side effects:I LOVE LOVE LOVE the effect it has on my neck and back, I have alot problems with my neck, I am a very tense person and also hyper-mobile so my chiropractor has a hard time working on my neck. I regularly get massages and adjustments but I never feel as good as when I am on steroids. I once went to get an adjusment while on steroids hoping it would be easier to get things in line. She was in awe and kept commenting on how 'easy' it was and there wasnt even much she needed to do. Finally she looked at me and said "its like you have a new body, WHAT did you do" and I told her. Having been on steroids herself for MS she said AHA! Anyway that is the ONLY thing positive but it is something I like. My regiment: I have a plan set up with my PCP that whenever I am on steroids I call her and she prescribes xanax for me, otherwise I am just way way too wound up and make everyone aroune me miserable. It makes it better. Recently I started taking lexapro as a short term situation so I called my PCP and asked to double my dose. Using 20mg lexapro and then I have been taking 2-3 xanax a day actually make me feel semi alright. I am home with my daughter this week and am able to enjoy myself and I am not a complete over-reactive loon. I think this will be my new gig and will keep lexapro on hand for when I take prednisone. Additionally, next time I see my PCP I will ask for a RX for a sleep-aid that will work short term because the advil PM probably really isnt a good idea and I have been needing two every night in conjunction with sleepy time herbal tea to get to sleep. As for my usage/experience I dont know if it is unique since i have been using prednisone frequently despite having PFT's around 100%. 2 years ago after being on 5 weeks (2 separate almost back to back courses) I kept feeling inflammed and like something was 'stuck' and my PFT's were varying by 20% and I would feel something 'moving'. I was also having intermittent pleural pain. That doctor waid my PFT's were "too good" to need steroids. I dont care how good they are if they are varying by 20% given my other symptoms something else was going on. I have a new clinic and now my new regiment is sometimes antibiotics, sometimes steroids, sometimes both depending on what is going on. Right now I just finished a two week course of IV's which worked wonderfully for the infection. However, just like the last time I took zosyn I felt inflammed afterward which again resulted in the pleural pain on one side (which is not my norm). So now I am in 20mg range of the following burst: 60mgx2, 40mgx4, 20mgx4. My doctor does not feel being on steroids like this a couple times a year is going to be damaging to me. I am however looking into taking NAC because I want to look at other ways to reduce inflammation pro-actively.

NAC Mucomyst Acetylcysteine

2010-01-26T17:33:00.000-08:00

Well whatever you want to call it I started taking it friday night, January 22nd. Unfortunately I wont be able to truly tell the difference because I ended up in the ER with my inflammation being so bad on saturday. It was too little too late. I had been trying to avoid steroids and see what the inflammation would do on its own. I also eliminated all inflammatory foods from my diet and planne to do the NAC but my body wasnt patient enough. We did chest x-ray to make sure nothing seriously problematic was going on and then I started 60m steroids. I can say that on sunday I got up a small little plug....I wouldnt exactly call it a plug but considering I have been getting no mucous up and it was dark green and thick mucous it was almost there.

My doctor RX 600mg 3x/day on the phone I said I really wanted at least 800mg and he said ok but it didnt come thorugh that way.....of course the nurse forgot for 3 days so I dont imagine he even remembered that convo so I will talk to him next time. I have been doing 1000mg 2x/day because of transporting it to work seeming like not a good idea with the stink factor and the spill factor and needing ot be refrigerated. Once I get a higher dose rx maybe I will.

I also have to get used to the taste. It is horrible, really really horrible. I dont do juice or pop but I tried taking frozen juice concentrate making it really strong and drinking it after and it didnt help. The one thing I found that worked was taking a shot of NAC followed by a shot of vinegar/water mixed which did fix it and alot times following up with a clemenetine or some other food. This however is too much acid for me because my belly is not pleased. I definately dont want to be gagging at work in canteen until I figure out how to tolerate this stuff!

Is fizzy nac this nasty? I thought about buying that for convenience and taking it to work.

GSK Study #2110399 in 2010 (Study Drug: SB-656933)

2010-01-23T18:24:00.000-08:00

With all my recent problems this sounded right up my alley. I contacted them immediately. Since once again chest x-ray looks great, lungs are perfectly clear, no sputum production but this intense pleural pain won't leave.

The pain traveled from its isolated location in my right lung last weekend to the whole lung after the acute flair I had. It has maintained a lower level pain in the whole lung with more pain in my 'bad spot'. Yesterday I felt some pains in my left lung and today was a bad day and it consumed the entirety of both lungs making it painful but not debilitating. I stopped off to the ER for a wet read chest x-ray which confirmed there was nothing 'exceptional' a couple nodular changes around my bad spot may prove interesting but most likely stuck mucous from not being able to cough well.

Study drug info

Study Drug, SB-656933, is a selective CXCR2 antagonist in development as a novel, once-daily oral anti-inflammatory agent for the maintenance treatment of Cystic Fibrosis (CF) and Chronic Obstructive Pulmonary Disease (COPD). We want to find out if this experimental drug will help decrease inflammation and slow the progression of lung disease. This study compares how well different doses of the experimental study drug (SB-656933) control inflammation in patients with CF. Two doses of the study drug will be assessed against placebo to see which dose works best.

I sent them the below email tonight. I hope they contact me. I am also considering leaving my center that I have only been at a year. The doctors are both great but the center is set up terribly as far as servicing a patient goes. I woudl have to travel even further so I may consider south of my house in Indiana.

I live in Michigan but would consider travel in order to participate in this study. I am a 30 year old female, diagnosed at 21 years of age, mutations P67L and E60X, borderline sweat test, pancreatic sufficient. Last FEV1 100% and FEV25-75 99% and I culture pseudomonas aeruginosa, achromobacter xylosoxidans, and recently suspected ralstonia paucula.

That being said my problems seem to revolve around inflammation more than infection. I finished a round of IV’s on Christmas day, the first in almost two years and it was after having H1N1. The past two times I have taken zosyn for IV’s I have gotten a horrible inflammatory response afterward. I am currently on a second round of steroids for a more extended period of time, probably 3 weeks since the 10 days I just completed did not work. I started xolair injections almost three years ago and have not had problems since although an IGE level is not possible right now, at least in the US. I also generally get inflammation and/or small amounts of hemoptysis as a flare as opposed to an exacerbation. Two years ago I went to a new physician who did extensive work to confirm my inflammation theories and we have since treated me with steroids when I feel it getting exacerbated and my FEV1 has improved markedly. The above mentioned FEV1 was when I was ill, the one before that was an FEV1 of 108%. Despite my good FEV1’s I had to start steroids today because of intense pleural pain that has lasted a long time.

I have currently eliminated all processed foods, meats, and dairy from my diet in addition to adding flax seed oil, fish oil, and 600mg acetylcysteine orally 3 times per day (my doctor would not write for the 1000mg Dr. Moss used). I have been diagnosed with ABPA years ago with an IGE of 1200 after steroid therapy got it down to the 500 range I tapered, for about 3 years after that it remained in the 3-400 range.

I realize the steroid is an exclusionary marker however I would meet the criteria after being off of it I believe. I am very interested in hearing from you. If I came to Stanford I would want to do a CF consult with Dr. Moss. I realize the travel costs would be my own.

Day 1

2010-01-10T07:38:00.000-08:00

I am hoping that this dietary experiment will yield some insight into my inflammation keys. If it doesnt than at worst I tried something, eliminated it and moved on. I think in general we eat way too much junk and even alot of the 'healty' foods have so much STUFF added to them.

I am going to be doing some research on elimination diets so that I can look into what order and how to add things back in and see the effect, if any, that they have. I will see which portions I can keep for good and which things I want to add back, others like sweets, I hope to find I can add back in moderation ;-)

Today is full blown day 1:

only water and lots of it

NO: sugar, caffeine, alcohol, chemicals/preservatives, meat, dairy,

Big On: fruits, veggies, grains in their natural state, nuts/seeds, oils, pure spices, beans/legumes, and salt of course

I have made exceptions for CaCl calcium chloride which is basically salt and citric acid i.e. fruit family.

The only other exception I made is in the sake of love and that is for my daughter, its my 30th birthday on the 20th and she is already talking about what kind of cake she is getting me so I may have a very small piece of cake that day because I dont want her getting a 'diet' mentaily and she wont understand at 3 years old what I am doing.

NAC & a near death adventure!

2010-01-09T07:09:00.000-08:00

So here's my update. For those of you in warm parts of the world MI had been having a good ol' blizzard lately---on clinic day none the less. I was heading into a one hour trip that would surely be closer to two hours thanks to the roads. I knew it was probably a bad idea since I hate to drive anyway but I am having alot of pain in my right lung (left side body) in an area that typically causes me problems when I have inflammation going on.

I had every NAC and inflammatory study in hand and was ready for a 'fight' of scientific will LOL with my doctor. My plan being to ask for mucomyst instead of buying bioadvantix thereby saving myself $3+/day but making it clear that I WOULD be doing it either way he he he. Before I left I prayed to allow the Lord to lead my hands and sharpen my eyes because of the bad weather which I had no idea HOW bad it was when I left since right around work we hadnt been 'hit' too bad yet. Well, I almost slid off a ramp, fishtailing, on the junciton of two major HIGHWAYS thank the Lord noone else was coming which is a rarity and I had the time and skil to finally getting it back under control. This was only 15 minutes into my drive so I turned around feeling it a sign. When I got back to work I found out they had closed the road I would have been on within 5 minutes if I hadnt turned around due to multiple accidents including a semi, a bus full of kids and a bunch of cars. I was disapointed knowing I would only be able to get into clinic in February now but thankful that I decided to turn around.

I decided to leave a message saying why I wasnt coming and asking the doctor to please call me since I have a 'clinic gatekeeper' style of a nurse and I think we have a case of 'mutual dislike' ever since I told her thanks but I preffered a doctors opinion ha. Thankfully my doctor called me and I talked to him and he already has two patients taking mucomyst for YEARS orally that swear by it so my way was paved! He agreed to test my neutrophils, eosinophils, and c-reactive protein (which all play a role in measuring inflammation) before I get started and then I will test them after 3 weeks.

This was all spurred by pain in my lung that left while I was on the higher dose of steroids and has gradually come back and this week seems to be rearing its head with a vengence. We talked about the fact that I dont have a collapsed portion of lung thats already been checked, I dont have an infection, and how this pain is either my 'new normal' due to some scar tissue we know is at the periphery of that lung or there is something inflammatory going on. If its inflammatory it will either even out over time since my lungs have been through alot lately and it is my 'bad time' of year or it will get worse because it is some inflamatory process going on which usually for me means I will cough up blood.

I am also getting my magnesium level checked since I just got done with IV's and I think I have had ringing in my ears a couple times. I am interested to see if I should get a higher quality Mg supplement or if my levels are adequate on the plan I have been using post antibiotics. I am also going to an ENT with an audiologist because I need both a sinus check and hearing check so it should kill two birds with one stone.

One other thing we talked about is how zosyn works so well for me but the last time I had these crazy mad inflammatory issues was after taking zosyn. I am talking ZERO mucous for 3 weeks now and my lungs are super clear so I dont think its stuck this time like it was a couple years back. Last time this happened we did a ton of blood tests and then a bronch to make sure it wasnt a bacteria thing which it wasnt before starting steroids. Last time it worked miraculously. This time after the IV's we went to steroids based on the pain I was having and my history. One thing he metnioned was that last time I was on steroids for 3 weeks, this time for 10 days. Last time I was supposed to be on them for 2 weeks and called saying I had just finally started opening up after the 9th or so day so maybe I wasnt on them long enough. He said we could wait and see or try more steroids depending on how much pain I was in. That is when I brought up the NAC idea so we decided to wait and see with my NAC plan below in place.

NAC plan is to take 800mg mucomyst Lord help me because I only drink water and I hear the stuff is awful. Anyway. I will do this three times a day. In addition for the rest of the month I am giving up all rpocessed foods, chemicals of any kind, sugar, alcohol, caffeine, meat, and dairy. So yes I am limiting myself to vegetables/fruits/unrefined grains such as oatmeal, rice, barley/oils/spices including salt of course but nothing mixed with a chemical/nuts/seeds. Before you worry I am an overweight cf'er who has lost 10lbs the past couple months and is looking to loose 15more I have eased into this plan over the past week by giving up something each day and nursing headaches from withdrawl with tiny bits natural sugar here and there and onc excedrin this week. I will also keep working out. So between eliminating all inflammatory factors, taking the NAC, and working out I am STOKED to see what sort of results I can get. I am also adding some essential fatty acid supplements to my vitamin regimen and of course still taking all my medications and doing my therapies. The full blown 100% detox hard core starts tomorrow--pray for me or wish me luck!

One additional thing to note is that my good old 'aunt flow' is going ot be here tonight or tomorrow. In the past I have noted a worsening of lungs and higher chance of hemoptysis around this time of the month thus by exaserbathing anything pre-existing. Last night the pain in my side (after talking to the doctor OF COURSE) got much much worse. I didnt get home until 10pm because I had a ladies craft night. By the time I got home I couldnt take a deep breath and I was in ALOT of pain. Walking up the stairs to the house and then upstairs to get my husbands attention was very hard and caused alot of pain. I went straight to bed, doing breathing treatments were out of the question. When I get pain bad like this I feel it radiate down and up my entire right lung from teh central point where the pain is when it is more mild I also get this feeling like there is a string tied to the muscle that runs along top of your shoulder from your arm to your neck and whenever I breathe I feel the pain plus the 'pulling' sensation. This morning my voice is intermittent and I think I might have caught a small cold to boot which also always gives me inflammation issues even when I dont have something else going on.

So my hope is that once my aunt leaves town and this cold decides I'm not worth its time *knocks on wood* that those portions of inflammation will go down. Then hopefully by tuesday or wednesday I can get started on the NAC and I have already started the above mentioned dietary components. I am hoping and praying that will put me in a good spot a week from now!

Rocking in '10

2010-01-01T10:39:00.000-08:00

After a rough start to my morning things are shaping up:

My first day off prednisone----hoorah

Lungs are feeling good post IV's (ended on Christmas---hoorah)

I got in a 5K on my elliptical---alright

hubby pulled some college kids out of a ditch - good karma

and.......I'm off to see Avatar with the hubby! After not being out to do anything social during IV/steroid time I'm giddy. PLUS we have a 'real' date day planned for tomorrow. What a lucky gal I am.

2010 Game Plan

2009-12-30T17:22:00.000-08:00

Well without further ado here are my 2010 goals. I plan to do a groundhog day approach checking in on 1/1, 2/2, 3/3 etc......hopefully I will do a bit better than last year at checking in as I was only at about 50%.

General Goals

Co-found group at church for people dealing with or supporting someone with a chronic illness

become debt free

better job of my wife/mom/work balancing act

read ~ a book a month

make it through the old testament & incorporate morning devotional time

go on a VACATION

do a random act of kindness at least once a month (I might blog about some of these so feel free to join me)

plan a date night with hubby once a month (sorry LOL these are top secret)

almost forgot...get BACK on the Great Strides walk bandwagon (had to miss due to surgery last year and shamefully did not do a letter writing campaign)

Health Goals

make a PPHR (portable personal health record)

get in better shape

have a respirtech rep come out and check how my vest is fitting and help me make another custom program

loose 20 lbs (I know I know but for me it will help with diabetes risk and lung function)

maintain my lung function

consult with ENT, it has been about 8 years and I have more sinus issues now

revisit dermatologist

more regular sinus rinses

start using NAC

do some research on prednisone usage

do a better job at staying 'up' on research

look up info on supplements

2009 the good, the bad, and the ugly

2009-12-30T16:15:00.000-08:00

So it's almost time to say goodbye to another year, I would say 'long year' but in actuality it has flown by. Usually I am pretty much ready to say goodbye to the year but despite some trying times I am just happy to reflect and get ready for another year. Maybe its my overall attempt at changing my spirit or having a softer outlook or maybe it's just being more grateful for what I have. Not to say that the year has all been a 'bed of roses' and lately it's been a bit prickly but.....that is life right? As my grandmother says "this too shall pass".

So let's get on with it then shall we.........

There was the GOOD

my salvation.....being baptized in conjunction with my grandmother has to go on the top list of all time

finding an interactive and uplifting church home that welcomes everyone as they are

working on my marriage and reaping the benefits

moving significantly closer to being debt free

meeting new friends at work and church

improving my lung functions

The BAD

a horrid allergy year including 3 allergic reactions resulting in steroids & serious 'not fun' times

a new lung bug (who's relevance is yet a mystery) that I'm totally not jiving

having a cold/flu/lung infection for pretty much the past 3 months with few breaks in between

fertility treatments back to back and the oh so not enjoyable side effects

and the UGLY

Loosing Grandpa Keith, Grandma H, and watching so many loose their battle waiting for lungs

Loosing our baby early on after trying so hard to have 'him'

2009 Year In Review

2009-12-30T15:58:00.000-08:00

Overall I am very pleased with myself, this is probably the best I have ever done. For me not just having 'a' resolution but a plan for the direction I want and goals are better. Checking in regularly helped too via my 'groundhog resolution' plan of checking in each month on 1/1, 2/2 etc

2009 Overall Goals:
Maintain my lungs - Improved actually *clapping*
get in better shape - so so, some parts yes, some parts no
Loose 20ish lbs - nope, not even close, thank you fertility treatments, prednisone, and laziness
Read more - I completed 16 non-fiction books
Be a better wife - Have definately come a long way
Find a church - Joined, baptized & fully involved
Read at least some of my new bible - Read New testament & portions of Old

2009 Health Specific Goals:
Up my workout routine to 5 days - not there yet

Start jogging again (with my Knees permission) - tons of problems they declined permission

Be evaluated for Tiger-2 - done (decided it was a no-go)

HTS routine - done

More huffing throughout the day - done

Start doing a BS monitoring 2x month - pretty good

FLUSH MY PORT ON SCHEDULE - better but needing improvement

More efficient & compliant way to wash/sanitize my nebs - done

Determine peak flow range - done (need to redo)

buy masks for cleaning, dusting, etc - done (need to use them ALL the time though)

buy allergen bedding and pillows - done (need new covers dont like the old ones)

start eliminating alot scented products - done (well with what is reasonable)

Bosu Training

2009-12-18T14:15:00.000-08:00

I wanted to tell everyone about my newest mucous relief workout. I have previously went to a gym and there was a bosu class that I loved but due to scheduling could only take about once per month. It always seemed on those days I got great clearance. I had a hunch it had to do with the type of workout it was but wasnt sure. Now we have decided to make a small home gym so its more convenient for us both to work out and I can avoid the germy gym and feel free to cough. I decided to invest in a bosu for toning since we couldn't afford nor had the room for a big bowflex or something.

I have confirmed my theory that it is the type of workout and not just a given day so I wanted to let everyone know about it. First let me say this is not a little pansy work out you can do hard core strength training on here, with the aid of some resistance bands, hand weights, and perhaps a small weighted soft ball you can do a TON. These classes @ the gym are considered very hard and when a guy comes in expecting to 'have fun' they leave crying (which is hilarious). Anyway the instability of the surface leads to core training no matter what you are doing. Then during the workout you are breathing hard and laying on your stomach, back, sides, walking up and down, bouncing, you name it on the ball. With all the different positions during the hard breathing it seems to really help dislodge mucous for me.

What's nice is you can do this at your own pace at any level and the book they send shows the excercises using the bar (easier) or not, there are all sorts things you can do to varying levels of intensity. There is also another set of 3 videos you can buy which I will eventually get too.

If anyone decides to try one out let me know what you think. Oh and it fits easily into a side area of a room and you just need to be able to step one step to the side and back to work out.

The bosu below is the dome, its basically 1/2 of a really strong ball mounted to a heavy non-skid platform. I bought the one that comes with a docking station below for $80 from and ebay store that sells refurbished ones (regularly $150) and so far so good.

The trainer helps because having the bar there you can do some additional excercises you cant otherwise do and you have the clips at the base thats hard to see here where you can attach resistance bands. It also comes with a workout video and brochure to show you how to do all the excercises.

Here is a short video just showing a couple things.

http://www.youtube.com/watch?v=M8mcHyfFvQI&feature=related

Sicko Routine

2009-12-13T14:24:00.000-08:00

I try not to waste a bad experience (getting sick) and not gain some good insight from it. Whether its examining my routine, addressing my own laziness/compliance gaps, or investigating a new item. This time I have looked more heavily into NAC and a humidifer......subjects to be broached with the hubby since the humidifier will run about $200 and the NAC almost $3/day.

I am going aggressive with my schedule to try and make sure I get my lungs cleaned out effectively. I saw FEV1 of 108% earlier this year and I sure would like to see that again come spring.

The biggest part of my routine is committing to working out at least 15 minutes each day, part of that is tricking myself because I know once I do 15 I will do more because I'll start feeling better. Today I KICKED BUTT and did 55 minutes---I also took a 2 hour nap but who's counting!

6am Zosyn
6am xopenex hypertonic saline vest
9am zofran
10am xopenex pulmozyme vest
2pm Zosyn
2pm xopenex hypertonic vest
5pm tobramycin
8pm xopenex hypertonic vest
9pm zofran
10pm zosyn

My New friend....err I mean Bug

2009-12-13T11:26:00.001-08:00

My culture came up showing a new bug. Here are the basics on it and an excert reading on it.

CDC group IVc-2: Cupriavidus pauculus Ralstonia paucula Wautersia paucula
A gram-negative, non- fermenting bacillus, rarely associated with human infections.

"They noticed several characteristics their organism shared with members of the genus Alcaligenes, now all classified in the genus *Achromobacter, first reclassified in the genus Ralstonia and recently transferred again, to the novel genus Wautersia.

*noteworthy: my sputum usually comes up with achromabacter in it but this year it has not and there is a part of me wondering, since they are closely related, if this mis-identified.
Cupriavidus pauculus is a gram-negative, non- fermenting bacillus, rarely associated with human infections.

LINEAGE:
cellular organisms
› Bacteria
› Proteobacteria
› Betaproteobacteria
› Burkholderiales
› Burkholderiaceae
› Cupriavidus

Clinic Gatekeeper Problems

2009-12-13T10:32:00.000-08:00

Well my colds have won the battle but will loose the war!

I have had 3 bouts illness since mid October. I took levaquin after the first one as it was a flu, I dont even think I was off the levaquin and I got the stomach flu as did my daughter and my husband. I had about a good week or so and I came down on thansgiving day, none the less, with a really bad head cold that in the end turned upper respiratory on me.

I could tell I had a sinus infection but thought an extra day of zithromax on an off day would do the trick. I was still on the fence as to wheter lung portion was clearing on its own when it took a very quick turn to the 'no such luck' side on thursday I waited to see if it was just a 'bad' day. On friday I was coughing horrid stuff out constantly, was completely whipped, and having bad pleural pain on my left side with each breathe=trouble for me.

I called the cf clinic (this is my 2nd year there) and left message on nurse's voicemail describing my symptoms and that I wanted to know when I could next be seen. As an explanation despite being larger this clinic only sees patients two days per month which is, in my opinion, ridiculous. They can get you in when you are ill supposedly but both times I have tried I had a problem. The one time last winter I had to see a NP which ended up being fine and she was on the phone with the doc etc but I had to push to get in and then this time. So the nurse called me back and says "I dont have any doctors or even the NP in all next week" so I ask what to do. While I'm waiting for a plan to hear what she can do she comes back with "well if it gets really bad you'd have to go to the ER" that's it, No but they can see you the week after (which is the holidays), No maybe we can RX you something...NOTHING. I was not pleased.

I said in as nice a way as I could muster "So I know I havent been @ this clinic long so I probably just dont understand how things work but it seems like I am only able to be seen two days a month and if I get sick between times then I am jsut out of luck" She confirms the way the clinic runs and follows up with sometimes she can get a doctor to see people in between their rounds, tehy work in the ICU too yada yada yada but there is always option of going to the ER. So of course I am still not impressed so I say "My understanding of this disease is that when you have an exacerbation it is best to jump on top of it quick so you are telling me that your best advice to me is to a-wait a couple weeks or b-wait until it gets bad enough I have hemoptysis and then rush to the hospital...either way just waiting for it to get worse". She counters with no you could got to the ER I just dont have anyone to see you and then starts saying *in a not so nice tone but not rude* well maybe I can wait until monday and page the dr to see if he can call you. I said "You know I am uncomfortable with this and I would really like the opinion of a doctor" she said she would page them to see 'see' if they could call me.

I am really not a fan of the nurse manager there--even before this but this concreted it in for me.

The dr calls about an hour later and I could tell by his questions that he had already reviewed and was still reviewing all my stuff whcih I was impressed with.

dr-so this has been a few days
me-no and explain the length and duration of the colds
dr-so then it turned to cf and not just a cold
me-yes about a week ago but it wasnt too bad and I thought maybe I could beat it but it took a sudden turn thursday
dr-any hemoptysis
me-yes I have had 3 isntances of streaking but I was 50/50 on where it came from
dr-sputum change
me-yes more and darker and thicker
dr-asks about peak flow
me-yes I havent had it up into my green zone since I started tracking it and sometimes I am not getting it into teh red zone

SOooo anyway the dr gave me the option of driving 1.5 hours (in a 1/2 blizzard no thanks) to come and be seen by him or we coudl get started on IV's right away today as I have been on the meds before and have a port so not a biggie. He felt given my symptoms we needed to start treatment immediately. UNLIKE the nurse who is a gatekeeper and doesnt listen.

In utero beta 2 adrenergic agonist exposure and adverse

2009-12-07T17:57:00.000-08:00

if you want this in email PDF file let me know in a comment and I'll send it

OBSTETRICS

In utero beta 2 adrenergic agonist exposure and adverse
neurophysiologic and behavioral outcomes
Frank R. Witter, MD; Andrew W. Zimmerman, MD; James P. Reichmann, MBA; Susan L. Connors, MD

Beta 2 adrenergic agonist drugs as a
class are used widely in obstetrics as
both tocolytics and bronchodilators.
This article will correlate the basic science
and clinical data to illustrate that,
when given prenatally, they can act as
functional and behavioral teratogens in
that they can alter permanently the balance
of sympathetic and parasympathetic
tone in the individual after exposure
in utero.
Animal studies will be presented to
support the concept that, in humans,
prenatal exposure to continuous high
doses of beta 2 adrenergic agonists can
dysregulate signaling from the beta 2 adrenergic
receptor (B2AR) permanently.
The association between sympathetic overactivity and disease will be illustrated,
and the association between in
utero exposure to beta 2 adrenergic agonists
in humans and the later development
of these conditions or their precursors
will be demonstrated. Additionally,
data to support a genetic predisposition
to the teratogenic effect of beta 2 adrenergic
agonists will be presented.
The implications for safe practice in
obstetrics will be discussed in light of the
teratogenic risk that is posed by beta 2
adrenergic agonists.
Basic science data that support
receptor sensitization
Terbutaline and similar drugs stimulate
the B2AR, which is part of the catecholamine
system of neurotransmitters. Cell
signaling that is associated with B2AR
stimulation results from the binding of
the ligands norepinephrine in the central
nervous system (CNS) and norepinephrine
and epinephrine in peripheral
tissues. The B2AR is expressed on mammalian
oocytes and preimplantation embryos.
1 Beta adrenergic receptors are expressed
widely in mammalian tissues,
which includes the brain during gestation.
2 In addition to coupling with the
stimulatory G protein to activate adenylyl
cyclase, generating cyclic adenosine
monophosphate and protein kinase A,
and increasing intracellular calcium as
second messengers, activation of the
B2AR also stimulates or inhibits mitogen-
activated protein kinases, which
regulate basic cell processes such as
growth, differentiation, apoptosis, and
migration.3,4 Early in fetal life, B2AR
stimulation coupled with cyclic adenosine
monophosphate generation provides
signals for growth and later promotes
important mechanisms, such as
axonal outgrowth in neural cells and differentiation
in diverse tissues.5-7
B2AR signaling is regulated during
postnatal life by desensitization (decreased
signaling) and down-regulation
(decreased numbers of receptors on the
cell surface). Both processes terminate
cell signaling if excessive input occurs
and are essential homeostatic mechanisms
that protect the cell from overstimulation
and metabolic acidosis. Animal
studies have shown that these
protective regulatory mechanisms for
B2AR signaling are not intrinsic properties
of cells but are acquired during prenatal
development. Fetal and newborn
tissues are not only resistant to B2AR desensitization
but actually show the opposite:
agonist stimulation of the fetal
receptor enhances net physiologic responses,
instead of producing desensiti-
From the Division of Maternal-Fetal
Medicine, Department of Gynecology and
Obstetrics (Dr Witter), Department of
Neurology and Developmental Medicine,
Kennedy Krieger Institute (Drs Zimmerman
and Connors) and Departments of
Neurology, Psychiatry, and Pediatrics (Dr
Zimmerman), Johns Hopkins University
School of Medicine, Baltimore, MD;
Department of Epidemiology, Johns
Hopkins University Bloomberg School of
Public Health, Baltimore,MD(Dr
Zimmerman); American Home Patient,
Brentwood, TN (Mr Reichmann);
LADDERS Clinic of Mass General Hospital
and Harvard Medical School, Boston,MA
(Dr Connors).
Received June 9, 2009; revised June 18, 2009;
accepted July 6, 2009.
Reprints not available from the authors.
Authorship and contribution to the article is
limited to the 4 authors indicated. There was
no outside funding or technical assistance with
the production of this article.
0002-9378/free
© 2009 Mosby, Inc. All rights reserved.
doi: 10.1016/j.ajog.2009.07.010
For Editors’ Commentary,
see Table of Contents
Beta 2 adrenergic receptor overstimulation during critical periods of prenatal development
can induce a permanent shift in the balance of sympathetic-to-parasympathetic tone. This
is a biologically plausible mechanism whereby beta 2 adrenergic agonists can induce
functional and behavioral teratogenesis, which explains their association with increases in
autism spectrum disorders, psychiatric disorders, poor cognitive, motor function and
school performance, and changes in blood pressure in the offspring. The use of beta 2
adrenergic agonists should be limited to proven indications when alternate drugs are
ineffective or unavailable; the risks of untreated disease to the mother and fetus are greater
than the risk of the beta 2 adrenergic agonist.
Key words: asthma, autism spectrum disorder, beta 2 adrenergic agonist, preterm
labor, ritodrine, terbutaline
www.AJOG.org Obstetrics Reviews
DECEMBER 2009 American Journal of Obstetrics & Gynecology 553
zation, as in adult tissues.8,9 The beta 2
agonist terbutaline crosses the placenta
and blood brain barrier and stimulates
B2ARs in all tissues of the fetus.2,10,11
Thus, exposures during pregnancy that
increase B2AR signaling or overstimulate
the receptor could have widespread
effects in light of the function of these
receptors during pre- and postnatal life.
The severity of effects depends on the
dose and duration of the exposure and,
most importantly, the stage of development
of specific brain regions and organs
during the time of insult.12,13
Rodent studies have shown that daily
subcutaneous injections of terbutaline
during postnatal days 2-5 result in abnormalities
in brain development and
behavior, compared with control rats.
Differences include changes in microarchitecture
in the cerebellum, hippocampus,
and cortex in juvenile rats (postnatal
day 30), functional differences in cell
signaling in juvenile and adolescent
(postnatal day 45) and adult rats (postnatal
day 60), behavioral changes in juvenile
rats, and neuroinflammation of
the brain in juvenile rats. These findings
are similar to those found in autism.
8,12-16 The amount of terbutaline
that is used (10 mg/kg) leads to robust
beta adrenergic receptor stimulation in
the neonatal rat.8 The dosage of terbutaline
in human pregnancy is 0.5-2 mg/kg/
d17,18; however, because the drug has a
much shorter half-life in the rat,19 the
dose that was used by the researchers
cited earlier was proportionately
higher.14 The 4-day duration for terbutaline
administration (postnatal days
2-5) is equivalent to 3-4 weeks in human
pregnancy.20,21 This early postnatal period
in the rat correlates with the mid-tolate
second and early third trimester in
human gestation,20,21 which are periods
during which pregnant women may be
treated with a B2AR agonist for preterm
labor. Previous research in rodents has
also shown that the period of postnatal
days 2-5 is a critical window in CNS and
tissue development. Administration of
terbutaline during the later period of
postnatal days 11-14 leads to fewer and
different abnormalities than those induced
by the early treatment.8
Data that support sympathetic
overactivity in selected diseases
Overactivity of the sympathetic nervous
system has been implicated in the cause
of certain disease states and contributes
to abnormal function in others. Increased
catecholamine levels are part of
the disease process in congestive heart
failure and cause chronic stimulation of
beta adrenergic receptors, which results
in tachycardia and increased contractility.
22,23 This overstimulation leads to receptor
desensitization, abnormal downstream
cellular signaling, and maladaptation
that eventually results in myocyte
hypertrophy, ventricular chamber enlargement,
and fibrosis. By decreasing beta
adrenergic receptor stimulation, beta
blockers have become part of the basic
treatment for this condition.
Hypertension, like congestive heart
failure, often is treated with beta adrenergic
receptor antagonists, although
overstimulation of beta receptors is not
thought to be the basis for this condition.
24 The exact mechanism for beta
blockers antihypertensive effects is unknown
but is thought to be due to several
modes of action, which include antagonism
of beta 1 adrenergic receptors in the
renal vascular bed. Stimulation of these
receptors normally produces renin;
blocking these receptors decreases renin
levels and conversion of renin to angiotensin
II, which is a potent vasoconstrictor.
Other mechanisms may involve
blocking beta adrenergic receptors that
control sympathetic outflow in the CNS
and changes in arterial baroceptor
sensitivity.
Ming et al25 measured baseline cardiovascular
autonomic function in children
with autism (ages, 4-14) and in agematched
healthy control subjects. They
found that measures of parasympathetic
activity, cardiac vagal tone, and cardiac
sensitivity to baroreflex were significantly
lower in children with autism,
compared with control subjects, and
were associated with significant elevations
in indices of sympathetic tone:
heart rate, mean arterial blood pressure,
and diastolic blood pressure. Low levels
of cardiac vagal tone and cardiac sensitivity
to baroreflex suggest impaired cardiac
parasympathetic activity, with unrestrained
and hyperactivity of the
sympathetic nervous system.
Rodent work has shown that overstimulation
of the B2AR by terbutaline
during postnatal days 2-5 results in effects
that can be related indirectly to
sympathetic hyperactivity, as in the
study of Ming et al.25 Acetylcholine receptors
that are found in the cardiovascular
system that normally act to balance
the catecholamine system are decreased
in number and function in the heart after
neonatal terbutaline administration.8,26
This would lead to a loss of parasympathetic
balance and overactivity in sympathetic
responses.
Human data that support poor
neurophysiologic and behavioral
outcomes after beta 2 adrenergic
agonist exposure in utero
The association of poor neurophysiologic
and behavioral outcomes in children
who are exposed in utero is seen
with _1 agent of this class. Terbutaline
has been associated with delayed development
of expressive language.27 Continuous
terbutaline treatment for _2
weeks in the treatment of preterm labor
was associated with an increased concordance
of autism spectrum disorders in
dizygotic twins.28 In utero exposure to
terbutaline by intravenous use for tocolysis
or aerosol for asthma has also been
correlated with autism.29 A reported association
of maternal asthma and autism
spectrum disorders in the offspring
might be explained by treatment with
beta 2 adrenergic agonists for treatment
of asthma during pregnancy.30 A recent
case control study that involved 398 children
with an autism spectrum disorder
diagnosis and 110 normal control children
who were matched for sex, birth
year, and birth hospital found that beta 2
adrenergic agonist exposure in the first
and second trimester may be associated
with a modest increase in the risk of having
a child with an autism spectrum disorder
(L.A. Croen, personal communication,
2009). In this study, albuterol was
the most frequently used beta 2 adrenergic
agonist in the first and second trimester,
which indicates that asthma treat-
Reviews Obstetrics www.AJOG.org
554 American Journal of Obstetrics & Gynecology DECEMBER 2009

ment may have been the reason for beta 2
adrenergic agonist use.
Increased psychiatric disorders together
with poorer cognitive and motor
performance have been seen in the largest
long-term prospective study of infants
who are born after in utero exposure
to beta 2 adrenergic agonists.31 In
this study, the agent was intravenous
fenoterol, followed by unspecified oral
beta 2 adrenergic agonists. Only those
children who were exposed to a longer
duration of therapy were affected
significantly.
Ritodrine exposure for tocolysis has
also been associated with poorer school
performance, compared with matched
control subjects.32 It is remarkable that
this finding in school performance occurred
despite the lack of difference
between the groups in developmental
delay, neurologic abnormalities, or behavioral
differences.
Alvarez et al33 found a hypertensive effect
in adolescents (ages, 13-16 years)
who had been exposed in utero to the
beta sympathomimetic ritodrine and
who were full-term births, compared
with control subjects without the exposure.
Heart rates and blood pressures
were measured for 48 hours with the use
of an ambulatory monitor. Teenagers
who had been exposed to ritodrine in
utero had higher heart rates, wider
ranges in systolic blood pressure, and
higher diastolic blood pressure than did
control subjects.
Not all follow-up studies of patients
who were exposed to beta 2 adrenergic
agonists have shown these adverse outcomes.
Other studies with isoxuprine34
and ritodrine35,36 have shown no adverse
effects when compared with control subjects.
One case series that included no
control subjects also showed no adverse
long-term sequellae at 2 years of age after
in utero exposure to terbutaline.37 The
ritodrine studies began with approximately
2 days of parenteral therapy followed
by oral treatment.35,36 Given ritodrine’s
relatively short half-life and the
listed oral dosing, it is likely that continuous
exposure at a sufficient level to
cause functional teratogenesis was not
present in the studies. Likewise, the isoxsuprine
study involved only short-term
exposure, and it is likely that insignificant
exposure occurred and may have
avoided functional teratogenisis.34 The
terbutaline study lacked control subjects
and involved the initiation of therapy between
27 and 36 weeks of gestation.37
Thirty-one percent of the patients in this
study started terbutaline therapy between
35 and 36 weeks of gestation. Animal
studies would suggest that the midto-
late third trimester may be too late to
see a major effect from beta 2 adrenergic
agonists. Thus, a sizable proportion of
the exposed subjects in this study might
not have been at the gestational age of
maximal risk.
Genetic predisposition
Single nucleotide substitutions or polymorphisms
of the B2AR gene have been
described. Three of these (Gly16, Glu27,
and Ile164) code for changes in the receptor’s
amino acid sequence that lead to
physiologic differences in receptor signaling.
Stimulation of the Gly16 and
Glu27 receptors in vivo results in decreased
desensitization and down-regulation
and is associated with enhanced
signaling,38,39 compared with the wildtype
variants Arg16 and Gln27. The
Ile164 polymorphism results in reduced
affinity for ligand binding and lower levels
of second messenger formation.40
Polymorphisms of the B2AR gene
have been associated with susceptibility
to and prognosis in diverse diseases and
conditions that include medication response
in asthma,41 occurrence of type 2
diabetes mellitus,42 outcome in congestive
heart failure,43,44 Grave’s disease,45
myasthenia gravis,46 rheumatoid arthritis,
47 obesity,48 and psychologic coping.
49 Connors et al28 found an increase
in the more active polymorphisms of the
B2AR in twins with autism spectrum disorders,
and Cheslack-Postava et al50
found an increased prevalence and
transmission of these polymorphisms in
singleton autism births. Thus, genetic
polymorphisms can change the physiologic
condition of receptor function and
contribute to predispositions for several
disease states. Considering the importance
of the B2AR in normal brain and
organ development, it is likely that polymorphisms
that increase or decrease signaling
are genetic risk factors for abnormal
brain development during gestation,
in a similar way as they are linked to disease
in other organs. The presence of
polymorphisms that are associated with
enhanced signaling would then become
a susceptibility factor for exposures to
sympathomimetic drugs and may be a
factor in defining the “population at
risk” for later neurodevelopmental disorders
in children after exposure to beta
2 adrenergic agonists during gestation.
Implications for clinical practice
Bronchodilator therapy with beta 2 adrenergic
agonists remains a mainstay of
asthma treatment. Data from 1995-1999
linked the diagnosis of maternal asthma
to autism spectrum disorders.30 In 2005,
the updated National Asthma Education
Report of the working group on asthma
and pregnancy removed oral beta 2 adrenergic
agonists from the recommended
pharmacologic therapy for
asthma during pregnancy.51 Inhaled
beta 2 adrenergic agonists remain a part
of the medically indicated therapy for
this potentially life-threatening condition.
Injected beta 2 adrenergic agonists
are not recommended because there is
no proven benefit of systemic therapy
over inhalation therapy.51
Albuterol is the preferred short-acting
inhaled beta 2 adrenergic agonist because
of the extensive data on the safety
of this agent during pregnancy.51 It
should be used for quick relief of symptoms
and to treat mild intermittent
asthma. Care should be taken to avoid
excessive treatment in light of the association
between albuterol exposure in the
first and second trimesters and a modest
increase in autism spectrum disorders in
the child (L.A. Croen, personal communication,
2009).
In patients with mild intermittent
asthma with symptoms on _2 days per
week and _2 nights per month, the
working group recommends low-dose
inhaled corticosteroid therapy as the
preferred treatment during pregnancy.51
Because of more data being available on
its use in pregnancy, budesonide was the
recommended inhaled steroid. Lowdose
budesonide inhalation is recommended
in the range of 200-600_g daily.
www.AJOG.org Obstetrics Reviews
DECEMBER 2009 American Journal of Obstetrics & Gynecology 555

If the patient’s symptoms occur daily
or _1 night a week, her asthma has progressed
to moderate persistent asthma.
For this severity, the working group has 2
alternate preferred treatments.51 To
avoid increased beta 2 adrenergic agonist
exposure, the treatment with mediumdose
inhaled corticosteroids should be
selected because the 2 regimens are
equally preferred. This would correspond
to 600-1200 _g of budesonide.
With the use of moderate-dose inhaled
corticosteroid, an additional benefit of
avoiding increased polypharmacy would
be achieved.
If the pregnant asthmatic woman has
continued daily symptoms and frequent
night symptoms, she has severe persistent
asthma. For these patients, the
working group recommends high-dose
inhaled corticosteroids and a long-acting
inhaled beta 2 adrenergic agonist.51 This
would correspond to an inhaled dose of
budesonide of_1200_g daily. There are
2 long-acting beta 2 adrenergic agonists
available: salmeterol and formoterol.
The working group recommends salmeterol
as the preferred long-acting beta 2
adrenergic agonist for pregnancy because
there was greater experience in
pregnancy with this agent.51 Long-acting
beta 2 adrenergic agonist use can lead to
tachyphylaxis for the B2ARs and is associated
with an increased risk of serious
adverse events and of asthma-related
deaths.52-54 Whether this increase in
asthma-related death is attenuated by
the concomitant use of inhaled steroid
cannot be determined from the available
data.54
An alternate, but not preferred, treatment
for severe persistent asthma is
high-dose inhaled corticosteroid therapy
plus sustained release theophylline to a
serum concentration of 5-12 _g/mL.51
Salmeterol has been shown to be more
effective in this group of asthmatic patients
when compared with sustained release
theophylline as maintenance therapy.
55 Although salmeterol plasma levels
after inhalation are low to nondetectable,
56 to avoid the risk of salmeterol, a
trial of theophylline may be worthwhile
in pregnant asthmatic women.
Beta 2 adrenergic agonist
use as a tocolytic
Short-term use of beta 2
adrenergic agonists
Beta 2 adrenergic agonists have been
used extensively to treat preterm labor
either intravenously or intramuscularly.
Ritodrine is the only agent of this class to
be approved by the Food and Drug Administration
for this indication. As such,
sales data were used by Leveno et al57
in 1990 to estimate that, although
_100,000 women were treated for preterm
labor with this agent annually,
there was no evidence that it had any impact
on low birthweight in the United
States.
Although many beta 2 adrenergic agonists
have been used to treat preterm labor
worldwide, only terbutaline is currently
in use in the United States. Headto-
head comparisons of ritodrine and
terbutaline have failed to show any difference
in efficacy58,59; this is true of
other beta 2 adrenergic agonists as well.60
The evidence for efficacy can be treated
interchangeably with these agents.
In the evaluation of agents for treatment
of preterm labor, it is important to
note that there is a demonstrated placebo
effect of approximately 20-50%.60
Therefore, only randomized placebo
controlled trials will give the most reliable
assessment of these agents. Ritodrine,
which is the most studied of these
agents, has not been shown to affect significantly
gestational age, birthweight,
incidence of low birthweight, or measures
of neonatal morbidity.61-64 It did
result in prolongation of gestation for 48
hours, which could allow for administration
of steroids to induce fetal lung
maturation.62,65
The American College of Obstetricians
and Gynecologists (ACOG) recommends
the use of tocolysis, including
beta 2 adrenergic agonists to allow steroid
administration to improve lung
maturation or to allow transport to a tertiary
care facility.66 Based on current
available data, short-term use for 48-72
hours should not pose an undue risk of
the induction of functional or behavioral
teratogenic effects from beta 2 adrenergic
agonists, and they may remain
among the agents that are available to clinicians
for this indication, if other tocolytic
agents pose a greater risk for the individual
patient. However, there may be
a subpopulation of mothers and fetuses
at increased risk because of the presence
of genetic polymorphisms of the B2AR
or other unknown factors. Further studies
are needed to establish the safety of
short-term exposure to these drugs.
Subcutaneous maintenance therapy
Based on case series, terbutaline that is
given by continuous subcutaneous
pump has gained popularity as a maintenance
therapy after threatened preterm
labor to prevent preterm birth. However,
because of the 20-50% placebo effect
that is seen in threatening preterm
labor,60 these reports are insufficient to
assess this therapy, and controlled trials
are required. There were 2 placebo controlled
trials of this therapy, both of
which failed to show any benefit.67,68
Both ACOG and Cochrane reviews of
subcutaneous terbutaline pump maintenance
tocolytic therapy agree that it is
ineffective.64,69 The Agency for Healthcare
Research and Quality assessed beta 2
adrenergic agonists as “high” in probability
of maternal risk, ineffective when
used for maintenance tocolysis, and advised
against any further research on
maintenance tocolytic use.70
In a large case series,71 cardiopulmonary
problems were seen in 0.54% of the
patients, and pulmonary edema was seen
in 0.32% of the patients. There are additional
reported cases of pulmonary
edema,72 terbutaline hepatitis,73 and
sudden death.74 The incidence of abnormal
glucose tolerance has been reported
in 1 case series,75 but not in another.76
However, in the study that did not report
an increase in glucose intolerance, the
need for insulin therapy was increased in
those patients receiving terbutaline.76
Adverse events with subcutaneous terbutaline
pump therapy are not limited to
the mother. Neonatal myocardial necrosis
also has been reported with long-term
subcutaneous terbutaline pump therapy.
77 Continuous exposure to terbutaline
for tocolysis by any route for at least 2
weeks has been associated with autism
spectrum disorders in the child.28
Reviews Obstetrics www.AJOG.org
556 American Journal of Obstetrics & Gynecology DECEMBER 2009

Because prolonged subcutaneous beta
2 adrenergic agonist treatment is not effective66
and has significant maternal
and fetal risks, its use should be abandoned.
There is no setting in which the
benefit has been shown to justify the risk.
Unfortunately, it continues to be prescribed
by 2% of maternal-fetal medicine
specialists.78 The actual rate of prescribing
may be higher because 31% of
maternal-fetal medicine specialists who
would not recommend maintenance tocolysis
will prescribe maintenance tocolysis
on patient request, but data are not
available about how often this occurs
and what maintenance tocolytics are
prescribed.78
Oral maintenance therapy
Although an early small placebo controlled
trial favored oral terbutaline over
placebo,79 a larger trial later showed a
lack of efficacy.80 The Cochrane Collaborative
Reviews recently reviewed 11
randomized controlled trials of oral beta
2 adrenergic agonists and concluded that
the evidence did not support their use for
maintenance therapy after treatment of
threatened preterm labor.81 An ACOG66
practice bulletin also assesses prolonged
oral treatment as not effective. Studies
cited earlier show that adverse functional
abnormalities in rats were at doses that
were designed to mimic oral or subcutaneous
administration of terbutaline.
8,17,18 Because there is no potential
benefit from this therapy and because of
potential risk based on animal data, the
use of oral maintenance therapy for
threatened preterm labor should be
abandoned. Unfortunately, it continues
to be prescribed by 4% of maternal-fetal
medicine specialists.78 As noted earlier
for subcutaneous therapy, the actual rate
of oral tocolysis may be higher than reported;
however, data are not available
for the frequency, types, or duration of
exposure.78
Acute treatment for fetal distress
Beta 2 adrenergic agonists, primarily terbutaline,
have been advocated for use in
intrauterine resuscitation for nonreassuring
fetal heart rate patterns and for
episodes of uterine tachysystole. Intravenous
ritodrine that is given continuously
during the second stage of labor abolished
the progressive fetal respiratory acidosis
that is seen during normal labor in
1 double-blind controlled trial.82 Single
bolus injections of 250 _g of terbutaline
were reported in case series to improve
fetal pH in cases of nonreassuring fetal
status that included bradycardia that
lasted for 2 minutes; fetal pH was unresponsive
to other methods.83,84 Additionally,
this single injection therapy has
been shown to be effective in temporary
inhibition of uterine activity at term.85 A
controlled trial confirmed these findings.
86 Based on these data, the use of
intravenous boluses of 250 _g of terbutaline
has been established as the standard
temporizing treatment for a nonreassuring
status in utero, especially when
associated with uterine tachysystoly.87
Terbutaline crosses the placenta after a
single intravenous bolus of 250 _g and
reaches a maximum fetal umbilical
plasma concentration of one-half of the
maximum maternal plasma concentration
and ranges from 0.75-3.46_g/L.10 A
single dose of this magnitude is unlikely
to result in injury to the fetal nervous system
because of the short duration of exposure.
Therefore, the balance of risk
and benefit for this form of beta 2 adrenergic
agonist therapy is in favor of its
continued use in clinical practice.
Conclusion
The permanent shift in the balance of
sympathetic-to-parasympathetic tone,
as a result of B2AR overstimulation during
critical periods of prenatal development,
is a biologically plausible mechanism
whereby beta 2 adrenergic agonists
can induce functional and behavioral
teratogenesis. Although the exact dose
and duration of exposure to achieve
these results is not yet established, currently
available data concerning increased
risk for autism in the offspring
suggest that the duration is likely to be
_2 weeks of continuous high-dose exposure.
The period of maximum teratogenic
risk is likely related to the time of
maximal brain development from the
mid-to-late second trimester through at
least the early third trimester. In addition
to autism spectrum disorders, conditions
that may be related to this teratogenesis
include increased psychiatric disorders,
poor cognitive and motor
function and school performance, and
changes in blood pressure.
Given the risk of long-term neurophysiologic
and behavioral impairment,
the use of beta 2 adrenergic agonists
should be limited to proven indications
when alternate drugs are ineffective or
unavailable and when the risks of the untreated
disease to the mother and fetus
are greater than the risk of the beta 2 adrenergic
agonist. Treatment duration
should be as short as clinically feasible.
Further ongoing surveillance of the use
of these agents in pregnancy is needed to
refine the parameters for their safe use in
pregnancy. Future pharmacogenetics research
is also needed to better characterize
the highest risk group for teratogenesis
from these agents. f
REFERENCES
1. Cikos S, Veselá J, Il’ková G, Rehák P, Czikková
S, Koppel J. Expression of beta adrenergic
receptors in mouse oocytes and preimplantation
embryos. Mol Reprod Dev 2005;
71:145-53.
2. Slotkin TA, Lau C, Seidler FJ. Beta-adrenergic
receptor overexpression in the fetal rat: distribution,
receptor subtypes, and coupling to
adenylate cyclase activity via G-proteins. Toxicol
Appl Pharmacol 1994;129:223-34.
3. Crespo P, Cachero TG, Xu N, Gutkind JS.
Dual effect of beta-adrenergic receptors on mitogen-
activated protein kinase: evidence for a
beta gamma-dependent activation and a G alpha
s-cAMP-mediated inhibition. J Biol Chem
1995;270:25259-65.
4. Schmitt JM, Stork PJ. Beta 2 adrenergic receptor
activates extracellular signal-related kinases
(ERKs) via the small G protein rap1 and
the serine/threonine kinase B-Raf. J Biol Chem
2000;275:25342-50.
5. Duncan CP, Seidler FJ, Lappi SE, Slotkin TA.
Dual control of DNA synthesis by _- and _-adrenergic
mechanisms in normoxic and hypoxic
neonatal rat brain. Dev Brain Res 1990;
55:29-33.
6. Kwon JH, Eves EM, Farrell S, et al. Betaadrenergic
receptor activation promotes process
outgrowth in an embryonic rat basal forebrain
cell line and in primary neurons. Eur
J Neurosci 1996;8:2042-55.
7. Gharami K, Das S. Thyroid hormone-induced
morphological differentiation and maturation
of astrocytes are mediated through the
beta-adrenergic receptor. J Neurochem 2000;
75:1962-9.
8. Slotkin TA, Auman JT, Seidler FJ. Ontogenesis
of _-adrenoceptor signaling: implications
for perinatal physiology and for fetal effects of
www.AJOG.org Obstetrics Reviews
DECEMBER 2009 American Journal of Obstetrics & Gynecology 557

THIS was NOT on my list........

2009-11-27T06:45:00.000-08:00

of things to buy today this was not on the list for the black friday sale! A horrid head (hopefully only head) cold. I had a super sore throat yesterday but was hoping it was sinus related. After turkey day events it started getting hard to swallow and during the night I was waking up having to blow my nose and choking on drainage.

This morning after a hot shower, hypertonic sinus rinse and alot astelin my nose is still going crazy, my voice is on the fritz, it's hard to swallow and I want to jab my ear drums out with a q-tip. Terriffic.

I was just thinking yesterday about how as a kid I was always sick on thanksgiving for years in a row (my baby sister was sick yesterday). I was thinking how I was so glad that trend was over. I suppose I am still glad it hung off a day but this was not in my plans for my long weekend.

I am thinking about going for a job to 'burn' it off and hoping it doesnt back fire and make me more miserable. Either way I am thinking vest 3x/day and extra HTS is in my long weekend future.

Reading Update

2009-11-24T17:52:00.001-08:00

Well I wanted a quick/easy read this past weekend while I was sick so I read The War Journal of Major Damon "Rocky" Gause it is a first hand account of a WWII escape. I had read it about 10 years ago or so and remembered loving it but not much else. I am not a history buff and my goal was to read a history book before the year is up so I guess this counts. I have two more of his books ordered!

I went ahead and ordered 5 other books from paperback swap which is an awesome site by the way where you get a 'credit' for sending out a book you dont want and then you can use that credit to 'buy' a book or you can just pay $ for credits so it will run you 2-3.50 for a book. Now I have some reading material on hand for winter.

Reading:
Bondage Breaker-Anderson
Power Praying Wife

Next Up:
Hiding Place -Corrie Ten Boom
Purpose Driven Life - Warren
Guerrilla Marketing in 3o Days
Band of Brothers: E Company, 506th Regiment, 101st Airborne from Normandy to.....
Harriete Tubman: Conductor on the Underground Railroad
Citizen Soldiers: The U.S. Army form the Normandy Beaches to the Bulge to the Surrender

Read:
Taming the Nueces Strip - Durham
The War Journal of Major Damon "Rocky" Gause-Ambrose
5 Love Languages - Gray
Power Praying Wife - Omartin
Dare to Discipline - Dobson
123 Magic
When Bad Things happen to Good People - Kuhner
Scientist in the Crib--Science meets how babies brains work--this just interests me
Happiest Toddler on the Block
Millionaire Next Door - Stanley
Love Dare
Home Safe Home (alternatives to toxic laden household products)

'One of these Days'
Skinny Bitch in the Kitchen (wholistic eating)
Omnivore's Dilemma
Power Spoken Word
Power Spoken Tongue
Sacred Marriage
Butekyo Breathing Shut your Mouth
The surrendered Wife-Neumans
"Better' - Atu Guande
Woman Power - Schlessinger
Priceless - Ramsey
Proper Care and Feeding Marriage - Schlessinger
QBQ - Miller
Raising Girls - Dobson

My inflammation journey & routine

2009-11-06T16:54:00.000-08:00

Someone had some questions for me related to my history with inflammation and bleeding and what I do. I have passed some of this on to others here and there so decided to post it. Of course I am in NO way saying this is a great idea or appropriate for me let alone anyone else ;-)

In a nutshell my old clinic said bleeding=infection=IV's and despite often not feeling sick when I would have a bleed since you can't do PFT's I couldn’t 'prove' them wrong. It was only after having a bleed within a week after a clean out and awesome PFT's that I got a 'hmm' maybe your right sort of thing but it was also countered with a ‘there can still be infection in the small airways’. This bleed that was immediately following my best PFT’s ever (at that time) and a pro-active clean out was also when I was doing IVF and was at the point where my estrogen sky-rocketed which in my mind ‘sealed the deal’ on my hormone suspicions. Then I didn’t bleed for 2+years when I was pregnant or breastfeeding further confirming my suspicions.

I have mentioned I had a bleed the first ‘real’ period I had after weaning. Once it restarted again I was confident it was inflammation and hormone related. I think my body can handle some inflammation, some dry air, some cold flu, some hormones but for me when you put them all together I get in trouble. So mine always seems to be feb/mar. Not that I never bleed other times but its almost a ‘guarantee’ in feb/mar. For me that’s when I've had a season full cold/flu seaon that I for the most part get over and the houses/buildings here in michigan are all really dry.
Now that I am more in tune with listening to my body I can feel the inflammation start to come on. I know my progression will be a sore back (different than actual back pain it’s a muscle thing), then I will get some pleural pain, maybe some shortness breath, sometimes I get pain when I am twisted a certain way and breathe (like compressed lung area?), decreased mucous production, then streaking or bleeding.

I left my old clinic over this. My new clinic did a lot to confirm my theory. They said they DO have some patients that seem to have inflammation playing a bigger role for them than infection. They said some patients get to where they can tell if they need antibiotics, steroids, or both.

They wanted to rule everything else out since there is no real way to 'test' what I was saying/explaining. Since I had just gotten of two courses of antibiotics totaling 5 weeks IV's within 2 months with 4 different meds the need for IV’s was ruled out. They did some extra blood tests for things related to aspergillus and ABPA complications among others which all came back clean. Then we did a bronch to make sure there was nothing atypical seen nor any bugs obtained that were hiding out deeper in the lungs and not coming up on sputum cultures. As a side note we did not explore my allergies because I was already being treated extensively for them and they were well under control (see below) I would highly recommend doing this as part of a ‘work up’. Oh and I also went to have an endoscopy to make sure my acid reflux was under control and not affecting things.

The only thing noteworthy on my bronch was the exclusion of mucous. My lungs looked a bit ‘pinker’ in some areas but still within a wide range of normal. There was very, very, little mucous which was a big part of what I had explained to the doctor, this was even less than I had EVER experienced and this was the worst inflammation/pleural pain issue I had ever had (note: mine never got extreme like I have read of others needing IV pain meds etc mine was bad enough to make me stop walking/breathing but 800mg ibuprofen would usually help it out). SO since we had ruled everything else out we decided to treat with steroids for two weeks and play it by ear. After ~9th day I started feeling ‘opened up’ and having mucous and movement, I called and asked for a 3rd week which we did. My PFT’s improved, streaking stopped, pleural pain stopped. I decided to hold my breath and not applaud too much lest I get a rebound infection or something.

I did not get an infection of any sort and last year feb/mar when I felt my normal pattern emerging I caught it early and went on two weeks of steroids---not IV’s. For the first time ever in feb/mar I did not have hemoptysis land me in hospital and on IV’s. As a matter of fact its been >2 years since IV’s now and I never normally made it a year. I have also been on orals only twice and both were somewhat precautionary before I was ‘really’ sick. Normally I was on IV’s 1-2 a year and orals another 2-3 times. The best benefit of all has been that my PFT’s have BIG TIME improved. I need to pull my actual PFT’s but I was getting huge variance before I left my clinic right after that 5 week cumulative IV course even within my 3 blows I was ranging from 86-95. I could tell there was a problem simply because of my variance which was very atypical for me. This year my most recent PFT’s Oct09 when ‘sick’ were FEV1 100 and FEV25-75% of 99 and earlier this year in the summer my ‘good’ time I hit an FEV1 of 108% which I have NEVER seen!

I truly believe there will be times when I need IV’s and times when I need steroids and times when I need both. I am also very pleased to have seen my sensitivities start to come back to levaquin among others.

You asked about my attempts to reduce inflammation. I think there is a HUGE key in what we eat and I would love to go to completely unprocessed foods I think it can make a huge difference, I can feel it even when I have done it for just short amounts of time and the research is out there to support it. I however at this point just can’t commit to that. I also think there is a lot value in some supplement, because I have been either pregnant, breastfeeding, or trying to get pregnant for past 3-4 years I have not done my research in this field.

What I have done is eliminated cleaning products from my house as well as fragrances. I still use scented hygiene products perhaps when money is less of an issue I will revisit this. I wrote multiple posts about greener cleaning, you can read 1st one here: http://cftoo.blogspot.com/2009/02/green-cleaning-experiment.html
I treat my allergies which I think is huge. In addition to my medicines (below) I take xolair to bind IGE and allergy shots. I also invested in one of THESE puppies http://cftoo.blogspot.com/2009/06/air-purifiers.html and love it so much I am prepared to buy a second soon, after we save some money for it. I also bought the other one to kill mold that is left in my basement and we have invested in new gutters in addition to our dehumidifier to prevent leakage dampness in the nice Michigan basement we have.

My medicines:
Allegra, xopenex, singulair, prevacid 30mg2x/day, astelin, Nasacort, pulmozyme 2 vials, TOBI, 7%HTS, advair HFA 230/21,

My vitamins: 1000mg VitC 2x day, prenatal+fishoil, calcium+D 600mg 2x/day, B complex, Magnesium and probiotics (I take occasionally and then every day after antibiotics)

I do respirtech vest 30 minutes twice a day. I TRY to do cardio 30 minutes 4 times a week. I rinse my sinus’s with Neil med though not religiously unless I am sick, cold, flu, stuff---trying to improve to every morning.
I really can’t think of anything else but let me know if I can answer any other questions.

Reading Update

2009-10-18T08:17:00.000-07:00

The only book I have been reading for some time now is my Bible which is awesome because I have gotten through the new testament. Decided to order a yearly or woman's study Bible for next year, haven't figured out which one.

Today I ordered 3 'new to me' books from the paperback swap since I had three credits so my next reads will be:

Bondage Breaker-Anderson

The Hiding Place -Corrie Ten Boom

Purpose Driven Life - Warren

Read:

5 Love Languages - Gray

Power Praying Wife - Omartin

Dare to Discipline - Dobson

123 Magic

When Bad Things happen to Good People - Kuhner

Scientist in the Crib--Science meets how babies brains work--this just interests me

Happiest Toddler on the Block

Millionaire Next Door - Stanley

Love Dare

Home Safe Home (alternatives to toxic laden household products)

On Docket in No particular Order:

Problem being once I get on a 'subject' I find more and more I want to read this is getting to be a problem--I am adding them quicker than I am reading them)

Skinny Bitch in the Kitchen (wholistic eating)

Power Spoken Word

Power Spoken Tongue

Sacred Marriage

Butekyo Breathing Shut your Mouth

The surrendered Wife Marriage Book-Gary Neumans

"Better' - Atu Guande

Some sort History Book - (perhaps Steve Ambrose?)

Woman Power - Schlessinger

Priceless - Ramsey

Proper Care and Feeding Marriage - Schlessinger

QBQ - Miller

Raising Girls - Dobson

Guerilla Marketing -

Reading Update

2009-08-16T17:11:00.000-07:00

Reading:
5 Love Languages - Gray
Power Praying Wife - Omartin
Dare to Discipline - Dobson

Read:
123 Magic
When Bad Things happen to Good People - Kuhner
Scientist in the Crib--Science meets how babies brains work--this just interests me
Happiest Toddler on the Block
Millionaire Next Door - Stanley
Love Dare
Home Safe Home (alternatives to toxic laden household products)

On Docket in No particular Order: Problem being once I get on a 'subject' I find more and more I want to read this is getting to be a problem--I am adding them quicker than I am reading them)

The Hiding Place -Corrie Ten Boom
Skinny Bitch in the Kitchen (wholistic eating)
Power Spoken Word
Power Spoken Tongue
Sacred Marriage
Butekyo Breathing Shut your Mouth
The surrendered Wife Marriage Book-Gary Neumans
"Better' - Atu Guande
Some sort History Book - (perhaps Steve Ambrose?)
Woman Power - Schlessinger
Priceless - Ramsey
Proper Care and Feeding Marriage - Schlessinger
QBQ - Miller
Purpose Driven Life - Warren
Raising Girls - Dobson
Guerilla Marketing -

general update

2009-08-16T17:04:00.000-07:00

its been a while which is generally a good sign. I forgot to do my groundhog day stats.

I guess the important ones are that I have been slacking on my sinus rinse's-just got out of the habit and now I need to buy some more as I am almost out. Still do great on boiling my nebs with the pasta pot. Haven't lost weight.

Still trying to get pregnant. If this cycle does not work then we will have to decide if we want to wait until spring or risk getting pregnant in October when that is the beginning of a not fun time and then I usually am ill in feb/mar which requires either IV's or steroids. I would prefer for any 'intervention' that would be required to be at the later stages of a pregnancy. So one thing at a time waiting to see if this cycle took first.

Have not been doing great on excercise. My foot is all gimped up giving me problems I am seeing a podiatrist, everything seems to make it irritated and I have went to wearing sneakers to work and most all the time around the house which is helping. In addition to that I have restrictions when doing these frozen embryo transfers both during the stim cyle and during the waiting cycle--fun times. I have been walkign at work alot, serious booking it pace for 40 minutes but that is still sub par.

My allergies are a bear lately but I started on a new nose spray, astelin, which I quit before because I hate but that in addition to the nasacort has helped with the sinus migraines.

All in all doing really well. The hormones have affected me a bit but not much and I actually made it through the feb/mar period without IV's which I kept thinking would come any week now but I think I can safely say I really DID make it and now I just hope to ward of any problems with the soon to be start of fall.

It's HERE!!!

2009-07-02T05:39:00.000-07:00

This might be the most excited I have been about a purchase since buying my new car in college--which I still have. I am now the proud owner of one of these babies: http://images.google.com/imgres?imgurl=https://www.airefficient.com/images/products/IQair/IQair.jpg&imgrefurl=https://www.airefficient.com/air-efficient-products/iqair-healthpro/&usg=__dDhuv-MSmfuPvI0AWn7ShSJM460=&h=315&w=960&sz=47&hl=en&start=18&um=1&tbnid=qJNavIx3p9rYgM:&tbnh=49&tbnw=148&prev=/images%3Fq%3DIQ%2BAir%2Bhealth%2Bpro%2Bplus%26hl%3Den%26sa%3DN%26um%3D1

so this is not the best site for product description but I thought they laid out the highlights with a really cool picture and background pretty well for the '30 second' preview. I have it on in my downstairs on full blast now to see what it can do. I am so geeky I am very tempted to see if I can aquire a particle counter to see how thoroughly it is doing my bedroom. I dont actually have it in our bedroom since its tiny, I have it just outside the door in hopes it will do the bedroom and the living/dining room whcih are one big room and that is where it is residing.

I will let you know what I think after a couple days. For those of you who dont know me my hubby and I are on a debt annihilation program where we are counting and scraping every penny so you KNOW this is important if I shelled out $900 big ones for it.

Air Purifiers

2009-06-27T05:30:00.001-07:00

I set out on a mission to figure out the most economical & effective way to purify my home air. I have known I should do this for some time now but really what made it a priority for me is #1 because I have had two almost back to back allergic reactions to my allergy shots--go figure, that require steroids and seem to have a negative impact on my lungs they reduced my dose in half and I come in twice as often. Unfortunately the shots are less effective that way so I have more allergy symptoms. The second one is that we have a damp basement and we have had torrential rains this year which leave the basement smelling musty/mildewy and having ABPA I know this is baaaddddd news. So, since we are on a budget and are better able to plan for large expenses like this I put a $500 place holder in teh budget thinking I wouldnt need it all and set out on my path to figure out what the 'best' deal was.

The way I started was I figured I would see what other CF'ers were using/recommending so off I went to the two main sites I use/have used and using the search function looked up old threads. Then I did some research on each of those. The main points I was looking at were: cost, efficiency, filter/upkeep require and costs associated, how big of an area it covered/how many I would need to buy, HEPA or 'other', what other consumers rated it or said problems with it were. I also wanted to know in addition to trapping particulates if they could kill/remove mold, chemical contaminants, and/or smells i.e. two dogs.

The ones I found recomended are below along with some basic review facts I found on epinions, NA means noone had rated it. *these are all hepa*

MODEL--------------------COST ---SQ.FT-- LBS--STARS-- 1'COMPLAING---Notes
whirlpool whispure510-----250 ----510 -----26 ----4.5------ size
honeywell 50250------ ----160 -----375 -----21 ----4.5------ loud/size
Bionaire -------------------70 -----168----- 14-----3.5------- quality/noise
Austin Air (baby breathe) -135------700-----12----NA -------------------------*has carbon
Honeywell 1700S -----------121 -------------------------------------------------*has carbon
IQ Air Health Pro ----------750----1000---------------------------------- *0.01micron HEPA

At this point in my research I was reading just enough to make my head spin based on OPO 'other people's opinions' I decided to do some research for myself like...........and I was pretty sure I had figured out that the best job could not be done by the most economical or 'best' deal unfortunately it appeared you got what you paid for--darn!

what exactly is 'hepa'
how many microns is 'normal' (its 0.3) and why does IQ do 0.01
what type of carbon material is used and is it really doing anything?
if a larger sq.ft is 'claimed' what if its two rooms then will it still only do one room?

I found a site where they describe what they do for independent 3rd party evaluation of air purifiers and it goes into great detail explaining alot about the industry and things to think about when buying an air purifier that I never thought of. I woudl HIGHLY recommend reading it here:http://forum.allergyconsumerreview.com/2008/01/22/how-we-rate-and-compare-home-air-purifiers/

here is an even more detailed article but might be overkill for most:
http://www.allergyconsumerreview.com/airpurifiers-information.html

and there are a TON of other great articles here (scroll down to where it says "best articles and charts on air purifiers"):http://www.allergyconsumerreview.com/air-purifiers-guide.html

Ultimately I decided to fork over the extra money (double what I had intended) to do the job right. I decided on two things and hope to get a second purifier for our second floor next eyar.

#1: We are getting a mold DESTROYER specifically for my basement. It uses very little electricity, has no fans etc to get clogged up in a dusty musty basement and uses a heated ceramic core to destroy everything that flows through it. It uses the natural flow of the room so takes like 3 weeks to get to optimum effectiveness but thats fine by me. http://www.allergybuyersclubshopping.com/af-ap-airfree-air-purifiers.html

#2: IQ Air Health Pro Plus. IQ are the 'cadillac' of the air purifier world and come with the associated price tag unfortunately. I did my research and I think its worth it, when it comes to my health. Also they come with a warranty and the longevity of these machines is PHENOMENAL it will outlive something that costs 1/2 or a 1/4 of its price by far and do a better job. I cant say I didnt have anxiety over the sticker shock I did but that is why I did the research. Also the filter replacement costs are greatly reduced compared to its competitors because each filter is separate. The one I bought has the 'real deal' carbon filter which is separate from the pre filter (which extends life of the others) which is separate from teh hepa. ALot of the ones out there have them all in one so you have to replace the hepa prematurely if you want the carbon to work etc etc.
http://www.allergybuyersclubshopping.com/iqair.html

I also bought my machines from the allergy buyers club, I like that they have someone chatting 24.7 that can help if need be and they were very helpful honestly. I couldnt beat the price on the internet, I could buy it from amazon etc but they have a top notch reputation, return, warranty etc etc program.

NOW I just cant wait to GET MY MACHINE!!

My plan is to have it just outside my bedroom so it can do the bedroom and the living room (where the dogs sleep). The sq.ft is only 'true' if you have it on high all the time, if I did do that then it would technically cover the downstairs which is all open except our bedroom so that would be cool. I plan to move our bedroom upstairs soon, the upstairs is smaller so then it would be our bedroom, the hallway (where dogs sleep when we 'live' upstairs), Lillians room, and the bathroom (good for my hairspray habit etc).

I will be sure to post back what I think. Let me know if you read the articles and decide to get a purifier.

oh and PS my 3nd choice was allens air

Groundhog Day Resolutions ...take 5

2009-06-04T02:16:00.000-07:00

LOOSE WEIGHT-C which isnt great but improving from an F last month. I managed to continue walking and eating pretty good while on the fertility medications trying to get pregnant despite not being able to truly excercise due to restrictions. I gained a bit but since it didnt work and I am not pregnant I have been doing pretty good at getting those pounds off. Additionally I have set the goal of getting down to 150 by august. Our plan is to try and get pregnant again in August so I would like to be as healthy as possible.

FLUSH MY PORT A yeah I finally completed this 4 weeks ago and am entering it NOW into my calendar for in two weeks and then a reminder every 6!

PEAK FLOW- E I should have done this after getting over the cold but was a bit consumed with all the fertility meds. Now that I am getting my lungs back (all the hormones seem to make me more gunky) I need to do this!

ELIMINATE SCENTS. C I have eliminated alot scented products from cleaning/beauty regimen. B+ Have went 100% green on cleaning, looking for a bleach substitute, looking for laundry alternative. Beauty regimen I now have the magazine/website need to actually set aside money in budget and do it. --ok update I have for the most part found the products I want to try, gotten the website I need to look at and the membership reference and put money in budget but just havent done it. I think I am having a hard time parting with my hard earned pennies! Will do it this month!

Research air purifiers and see if I should get a couple. C, research mostly done, teetering between a couple options, money set aside in budget just need to make a decision and purchase them--see above excuse!

DONE

MASKS Buy some breathe right masks for cleaning, dusting, etc DONE B+ plus wore them to clinic, need to improve on wearing in basement. --status quo

NEB SANITIZATION A+ Still loving my pasta pot---status quo

Buy allergen bedding and pillows! DONE (but had to ditch my expensive allergy pillow I know have an allergen cover over my normal pillow and am in search --sort of for a new pillow)

Prego on the Way? (not spaghetti)

2009-05-19T03:58:00.000-07:00

Well today is the big day!

We will be having our embryo's transferred in precisely 3.5 hours. I have done all the prep work I can to make sure my health is on track.

A1C-perfect
Acid Reflux-controlled and all the tests are working to find out if there are any 'reasons' behind it
Excercising - check
Eating better - check
Pulmonary pre-pregnancy visit - check (FEV1 104%)

So I guess the only things I can do are cross my fingers, sit back, try to relax and pray for the strength to get through this. Cycling is very very hard on me, hormones are NOT my friend, other medications and procedures, chronic issues to deal with no problem. Give me a tiny shot of hormones (past two weeks) and you get migraines, nauseau, bloating like mad and oh yeah HORRID moods. Fun fun fun. But it will all be worth it assuming it works.

Of course when you put this much on the line just trying to get pregnant I feel like I need a back up plan. That is forming but for now I am off to collect my materials for my next two days of quasi bedrest and to take a brisk walk since i will be sedentary for a couple days.

Clinic Visit Cheer

2009-05-15T02:15:00.000-07:00

13May2009 FVC 118 FEV1 104 (down 4%) FEV25-75% 88 (up 1%)
Clinic Notes: re-check post steroids and pre-pregnancy. Everything looks great, feeling good, allergies are problematic and doc did say that my theory on my allergic reactions having residual inflammatory effect on my lungs (which I did another week steroids for) was very possible. His pregnancy recommendations are to be vigilent with physiotherapy especially hit it hard in 2nd tri' to get ready for 3rd when lungs are most compromised and there is the biggest risk.

March2009: FVC FEV1 108% FEV25-75% 87 (have to go back and get these numbers)
Clinic Notes: Recheck after end of steroids, feeling good. Best FEV1 ever!

29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.

15Dec2008 FEV1 103% FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 824Dec2007: FVC 99 FEV1 91 FEV25-75% 77

sleep study

2009-05-15T02:03:00.000-07:00

WOW!

Finally for once in my life I passed a medical test with nothing noteworty. That is great news! Of course I felt like I had slept great so I wasnt surprised. He said that diagnostic criteria is >5 events per hour and I had less than one which even one is perfectly normal. This time I was told my test could be used as an example of 'normalcy' that might be a first ever normally they want to use my results or case as a 'study' example LOL.

Hooray!

Lung Disease at Diagnosis in Infants with Cystic Fibrosis Detected by Newborn Screening.

2009-04-18T16:21:00.001-07:00

will be using this as a reference when people need a reason why they should pro-actively treat asymptomatic children. Thanks Amy for the heads up!

Saturday, April 18, 2009

Lung Disease at Diagnosis in Infants with Cystic Fibrosis Detected by Newborn Screening.
Lung Disease at Diagnosis in Infants with Cystic Fibrosis Detected by Newborn Screening.

http://snipurl.com/g5wuv Sly PD, Brennan S, Gangell C, de Klerk N, Murray C, Mott L, Stick SM, Robinson PJ, Robertson CF, Ranganathan SC.Division of Clinical Sciences, Telethon Institute for Child Health Research and Centre for Child Health Research , University of Western Australia, Perth, Western Australia, Australia; Department of Respiratory Medicine, Princess Margaret Hospital for Children, Perth, Western Australia, Australia.

RATIONALE: The promise of newborn screening (NBS) for cystic fibrosis (CF) has not been fully realised, with improvement in respiratory outcomes unclear. We hypothesised that significant lung disease was present at diagnosis.

OBJECTIVES: To determine the extent of lung disease in a geographically-defined population of infants with CF diagnosed following detection by NBS.METHODS: Fifty seven infants (median age 3.6 months) with CF underwent bronchoalveolar lavage (BAL) and chest computed tomography (CT) using a 3-slice inspiratory and expiratory protocol.

MAIN RESULTS: Despite the absence of respiratory symptoms in 48 (84.2%), a substantial proportion of infants had lung disease with: bacterial infection detected in 12 (21.1%), including S. aureus (n=4) and P. aeruginosa (N=3); neutrophilic inflammation (41.4 x10(3) cells/ml representing 18.7 % of total cell count); pro-inflammatory cytokines with 44 (77.2%) having detectable IL-8 ; and 17 (29.8%) having detectable free neutrophil elastase (NE) activity. Inflammation was increased in those with infection and respiratory symptoms however the majority of those infected were asymptomatic. Radiological evidence of structural lung disease was common with 46 (80.7%) having an abnormal CT; 11 (18.6%) had bronchial dilatation, 27 (45.0%) had bronchial wall thickening and 40 (66.7%) had gas trapping. On multivariate analysis free NE activity was associated with structural lung disease. Most children with structural lung disease had no clinically-apparent lung disease.

CONCLUSIONS: These data support the need for full evaluation in infancy and argue for new treatment strategies, especially those targeting neutrophilic inflammation, if the promise of NBS for CF is to be realised.

Forever N Ever N Always

2009-04-13T17:25:00.001-07:00

Whether its the adoption stories, the spiritual side of things or the great photography this blog I recently discovered is really capturing my interest, mind, and heart so I thought I would share.

http://forevernevernalways1.blogspot.com/

Prednisone Perk

2009-04-11T17:33:00.001-07:00

Ok so I have had yet another allergic reaction to my allergy shots. This one not so bad as the first.

Image: http://i179.photobucket.com/albums/w310/mom2lillian/DSCF0028-1.jpg
Image: http://i179.photobucket.com/albums/w310/mom2lillian/DSCF0027-1.jpg

After the first one I went back down a level and worked my way up to maintenance level, this is my second shot at this level with no reaction last time. This time it burned SUPER bad going in again and I thought 'uh oh' but then countered with the thought that it was unlikely to happen a second time and I was just being paranoid. Hmm maybe not.

Those photos are taken 7 hours after my allergy shot. This time I started on 60mg prednisone immediately because doubling up on all the allergy meds (claritin, allegra, singular and triple doses benadryl dried me out and negatively impacted my lungs). I dont want to let it get out of control again, sast time I let it spread to below the elbow and up around my shoulder blade before we tried steroids and it spread further before they took affect getting down into my fingers and on palm my hands--not fun. My arms were huge swollen hot red lumps ta boot.

So the big question for me is why all the sudden now, I have been at this maintenance dose for 17 months! There are, unfortunately, no clear answers. The allergist while unsure why now said it can sometimes be associated with level allergens in the air being high and then you are exposed to that and the dose is too much cumulatively for your body to handle and tree pollens were very high with this second go round. I reacted to both shots but he said once reaction starts it would react to everything and the one arm definately reacted moreso to start with.

He thinks maybe I cant tolerate (frow whatever reason) the full 0.5 maintenance dose and was thinking of reducing it. I also asked how being pregnant would impact this because I feared having a reaction when I was pregnant as we plan to try again very soon. I did not want to take the chance nor did I want to take steroids etc on the flip side the shots help my lungs adn I want to stay healthy during my pregnancy. He said the protocol for allergy shots when pregnant (they are consdiered safe) is to cut dose in half and come 2x as often so 0.25 every other week instead of once per month. This introduces less allergen to your system at once but still gets the same net exposure over month, less at once means you are less likely to 'overflow your bodies capability handling it'. He said he had never had a reaction with this plan so we would try it for me irregardless of whether I get pregnant this spring or not.

Now for the bonus. I was just getting over a nasty head cold and knew I had a bit of residual in my lungs and sinuses I hadnt been able to get out. The steroid burst seems to be helping out with this immensely I am getting ALOT out and have taken advantage of the reduced inflammation by flooding my body with HTS in middle today along with the regular and I have also finally gotten some good sinus clearing. Steroids are NOT my friend dont get me wrong, I get emotional, jittery, anxious, and hungry but the 6 day course is not bad and is doing my lungs nicely so maybe, perhaps, it was meant to be because I truly do believe that everything happens for a reason!

Groundhog Day Resolutions ...take 4

2009-04-06T03:36:00.000-07:00

First this groundhog thing rocks because I have never made it this long on tracking a large set of goals regularly, I finished tracking past couple years but never checked back periodically so thats a big bonus accomplishment.

LOOSE WEIGHT-F no real excuses here just completely sucking. I was doing well then let life get in the way and to boot last week I completely banged up my knee to the point barely walking let alone working out back on wagon this week.

FLUSH MY PORT ON SCHEDULE F Duh why am I so dumb about this?

FIND MORE EFFICIENT NEB SANITIZATION A+ I have been buying 4 jugs distilled and using it for boiling/nasal rinses. If you havent look into a pasta pot, super easy.

Determine a new peak flow range- On hold again, first steroids now I have a nasty cold affecting things.

Buy some breathe right masks for cleaning, dusting, etc DONE B+ plus wore them to clinic, need to improve on wearing in basement.

Buy allergen bedding and pillows! DONE (but had to ditch my expensive allergy pillow I know have an allergen cover over my normal pillow and am in search --sort of for a new pillow)

Start eliminating alot scented products from cleaning/beauty regimen. B+ Have went 100% green on cleaning, looking for a bleach substitute, looking for laundry alternative. Beauty regimen I now have the magazine/website need to actually set aside money in budget and do it.

Adding another to my list....

Research air purifiers and see if I should get a couple. F not started

borderline sweat tests

2009-03-28T05:32:00.000-07:00

Borderline sweat test: Utility and limits of genetic analysis for the diagnosis of cystic fibrosis

Available online 24 January 2009.

Abstract

Objective
The sweat test remains the gold standard for the diagnosis of Cystic Fibrosis (CF) even despite the availability of molecular analysis of Cystic Fibrosis Transmembrane Conductance Regulator gene (CFTR). We investigated the relationship between CFTR mutation analysis and sweat chloride concentration in a cohort of subjects with borderline sweat test values, in order to identify misdiagnosis of CF.

Design and methods
In the period between March 2006 and February 2008 we performed 773 sweat tests in individuals referred for suspect CF. Ninety-one subjects had chloride values in the border-line range. Clinicians required CFTR gene complete scanning on 66 of them.

Results
The mean value of sweat chloride in the DNA negative subjects was lower than in those with at least one CFTR mutation. Our data indicate that 39 mEq/l is the best sensitivity trade off for the sweat test with respect to genotype.

Conclusions
To optimise diagnostic accuracy of reference intervals, it may be useful to modify from 30 to 39 mEq/l the threshold for sweat chloride electrolytes.

Gene modifies severity of cystic fibrosis lung disease

2009-03-25T02:29:00.000-07:00

Decided I need to start saving some articles I find really interesting and may want to refer back to so I dont have to keep hunting them down via link, blog, hard drive, hard copy what have you.

http://ec.europa.eu/research/headlines/news/article_09_03_25_en.html

Gene modifies severity of cystic fibrosis lung disease

Cystic fibrosis, the most common congenital disease, affects children's lungs, intestines and pancreas. While it is recognised that it is caused by a defect in a single gene, clogging the organs with thick mucus, an international team of scientists have identified a gene that modifies the severity of lung disease in people with cystic fibrosis. Their discovery can lead to new targets for treatment. The results of their study were recently published in the journal Nature.
Cystic fibrosis affects 70 000 people worldwide© ShutterstockThis study, according to the scientists, was key in strengthening cooperation amongst researchers and raising awareness about cystic fibrosis. 'This is a good example of researchers with different expertise coming together and using the knowledge gained from mapping the human genome to make discoveries that improve our understanding of cystic fibrosis,' said Dr Carl Langefield from Wake Forest University School of Medicine and co-author of the study.'It may also help in the identification of targets for drug development and the development of tools for the earlier diagnosis of individuals with cystic fibrosis who are susceptible to severe lung disease.'The group of scientists evaluated the genetic makeup of almost 3 000 cystic fibrosis patients. They discovered that small genetic differences in the IFRD1 (interferon-related developmental regulator 1) gene correlate with the severity of lung disease.The scientists also found that the protein encoded by IFRD1 is particularly abundant in neutrophils, a type of white blood cell, and it regulates their function. Neutrophils have been identified as triggering inflammatory damage in the airways of people suffering from cystic fibrosis.'Neutrophils appear to be particularly bad actors in cystic fibrosis,' explained Dr Christopher Karp from the Molecular Immunology at Cincinnati Children's Hospital Medical Center in the US, the senior investigator in this study. 'They are important to the immune system's response to bacterial infection. In cystic fibrosis, however, neutrophilic airway inflammation is dysregulated, eventually destroying the lung.'Past studies have shown that mutations in the CFTR (cystic fibrosis transmembrane conductance regulator) gene trigger cystic fibrosis but questions remained over the molecular mechanisms that link these mutations to the generation of lung disease, the scientists said. According to them, the severity of cystic fibrosis lung disease can be controlled by the variations in other genes.The scientists assessed mice whose IFRD1 gene was removed and they confirmed its role in regulating inflammation and disease once it was removed. Bacteria are not quickly cleared away from the airway when the gene is missing.By checking the blood samples of healthy human volunteers, the team discovered that the same IFRD1 variations that altered the severity of cystic fibrosis lung disease also changed neutrophil function in the volunteers.They also found that IFRD1's regulation of neutrophil function depends on its interaction with the class of enzymes called histone deacetylases. The scientists said more information about this interaction is needed if it is to play a role in treating the disease.'It's possible that IFRD1 itself could become a target for treatment, but right now it's a signpost to pathways for further study,' Dr Karp explained. 'We want to find out what other genes and proteins IFRD1 interacts with, and how this is connected to inflammation in cystic fibrosis lung disease.'Cystic fibrosis affects 70 000 people worldwide and there is no known cure. Experts say the predicted median age of survival for a person with cystic fibrosis is 37 years, but with the introduction of new treatments this number can rise to 40 or even 50.Other institutions involved in the study were Biocenter, Division of Cell Biology at Innsbruck Medical University in Austria and the David Hide Asthma and Allergy Research Centre, Newport, Isle of Wight in the UK.

Inflammation Confirmed

2009-03-20T18:34:00.000-07:00

ok so to update. I did the two weeks of steroids, that ended about 3 weeks ago, I had a check up yesterday. During that first week steroids I also removed all cleaners from my house and stopped using fabric softener (replaced with white vinegar in downy ball).

My FEV1 is 3% HIGHER than it has EVER been, thats right ever! Last time I did steroids it took me a while before I got fully up to speed and I have not been hitting gym as hard as normal. FEV1 of 108% and FEV25-75 was 90% my FVC was 124%--previous high 111, I have seen small airways higher but 90ish is my 'normal' and especially good given its March which is a tough time for me. Oh and I was also a bit under the weather with sore throat etc.

My doctor took a LONG time between when I heard him grab my chart from the door and when he came in, I found out he went back to look and see if I had ever had #'s this high. I have had 103% a few months earlier before I started feeling the inflammatory winter problems I get set in. I have had 105 once before at other clinic but the instrumentation is completely different and I am not sure they are comparable. I am not saying this to say 'ooh look at my #'s' I am showing the big difference because normally I would have done 2 weeks IV's and not gotten that high and not felt as good lung wise.

As the doctor said, "I think we are on to something here". Basically he said a small subset of cf population does seem to have a larger inflammatory, allergy, asthma, type problem than they do with infections. He siad sometimes we will need just ABX's, sometimes, just steroids, sometimes both and we will have to discover what my 'pattern' is, he said his patients like this can tell him what they are experiencing fairly accurately, like I did when I came in february with my same symptoms I always get in feb.

I will still be looking to improve my health and eliminate any triggers I can but I am very glad to know that I have an effective treatment. He said he would not expect any side effects long term for my health from usage 1-2x per year, if we had to extend the time or use it more frequently then we would more closely monitor for osteoporosis or diabetes.

I told him about my efforts to 'green up' my house via cleaners scents etc. He said given the fact I am allergic to everything airborne they test for, I have ABPA, take xolair with huge results etc that it makes alot sense. He said whether it is immune modulated response, sensitivity, or true allergies it is all going to do the same-relatively speaking, same thing and that unfortunately the symptoms often mimic typical cf symptoms and it can be hard to pick up the difference. Hallelujah someone believed me!

So I guess moral of the story is listen to your body, research, talk to others and ADVOCATE for yourself. Goodness knows this wasnt easy it took leaving my normal clinc, driving 70 miles to a new one, and months of testing and treatments to get it all figured out but I think we ARE on to what I need--now--finally!

Groundhog Day Resolutions ...take 3

2009-03-12T03:42:00.001-07:00

A bit late this month....

My FYI Plan:
Up my workout routine.
Have been getting there less than I want, the steroids made it hard for a while because I was so tired, getting back in to it but haven't always been getting 5 days. So far this week for instance I did mon/tue and walked at work 30 min yesterday. Today I missed again.

Loose around ~20 pounds, more a size/look/feel issue but that's probably about max I'd want
I got to 11 pounds down and then did steroids, now I am at only 6 pounds down but working this week to loose those lbs very quickly via eating unprocessed low sugar for a couple weeks.

Do more huffing throughout the day
Doing well on this!

Start doing a BS monitoring 2x month or so
Doing well on this as I just got done with steroids and trying to make sure I get things back in line. BS were a bit high for a while and so now doing unprocessed food with no sugar added and getting it and weight back down.

FLUSH MY PORT ON SCHEDULE
I am horrible about this....still not done

Find a more efficient & compliant way to wash/sanitize my nebs.
Pasta pat is working well with the boiling, just ran out of distilled last night so need to fill jugs back up, that is the hardest part is remembering to refill!

Determine a new peak flow range
Printed sheet still lying there with 3 numbers on it. In my defenese I wanted to wait until steroids were done.

Buy some breathe right masks for cleaning, dusting, etc
DONE and have been using masks for cleaning and mostly when going in basement.

Buy allergen bedding and pillows!
DONE

Start eliminating alot scented products from cleaning/beauty regimen.
Have went 100% green on cleaning, looking for a bleach substitute, looking for laundry alternative. Beauty regimen I am waiting on a magazine from someone who has deal to order via wholesale organic club--doing it for laundry soap too.

Adding another to my list....

Research air purifiers and see if I should get a couple

PFT Tracking

2009-03-03T02:10:00.001-08:00

I have been keeping my PFT's in an excel file, if anyone knows how I can import that here, picture of the graph etc I would appreciate it.

19Mar2009 FVC 124 (up 13% from best ever), FEV1 108 (up 8%, up 3% from highest ever), FEV25-75% 90%(up 2%, down 12% from best ever)
One word FAN FREAKING TASTIC--ok that's 3 words

Clinic Notes: definately inflammatory in nature! Despite having a slightly more productive cough the sputum seems easier to get up and is still light yellow in color. Who knows maybe this is what I always produce I just didn't used to get it up as effectively. It's almost all between 10-12 after xopenex, HTS, pulmozyme have time to do their work and the excercise has paid off. I have increased my HTS usage and also 'greened up' the house which I really have noticed a difference on. I also think the 2xprevacid has a positive effect as I dont think I realized I had acid reflux all the time until it got to the point it was a huge problem.

29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)

Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.

Treatment Notes: Added 40mg, 60mg, 60mg days 1-3 then did rx treatment--bad I know but need to document it and then tell them in a couple weeks. Streaking in day 2, none since. Peak flow went up from 450 range to 540 (10 higher than previous best). Today is day 1 of 10mg and peak flow sits at 520 post treatments.

Sputum was not moving full force until days 4-5 then 'broke loose' (this was my note with previous steroid treatments in the fall) then started clearing back up. I did start getting junky days around 30mg dose days (7-8) so perhaps some more movement from a lower area? TOBI ended 2 days ago, have been doing extra HTS and minimum 3 treatments a day, getting good clearance with lots light yellow mucous. Working hard at extra huffing and coughing, hopefully paying off, so far it feels pretty good no tightness or pleural pain has returned except on one of the 'junky' days 8-9.

Reminder: During revisit in March come up with steroid 'plan' if & when needed again that includes a rx for xanax and sleeping pill rx by primary. Have not been able to sleep without tylenol pm, not good.

15Dec2008 FEV1 103% FEV25-75 102%

Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152

Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 824Dec2007: FVC 99 FEV1 91 FEV25-75% 77

Trial: Vinegar Mopping Review

2009-03-02T16:21:00.000-08:00

Ok so today I arrive home to find that I had forgotten to shut the gate that keeps the dogs UPSTAIRS! This wouldnt be a huge deal other than a hairy couch except it was also trash day and there wasnt enough room in the bin for the kitchens garbage so I left it ready to go out when the bin was emtied. Yeah, a hound dog and boxer can make a full can of trash travel a LOOONGGG way. I have been putting off mopping the whole house and just doing alot swiffering because with all these freeze thaw cycles they track the muck right back in and I get discouraged.

So since I had to do the floors I figured I'd try out the 50% vinegar mop this time, delivered via a spray bottle that I used to use with the laminate floor cleaner. I have all hardwood and ceramic tile except the kitchen which is the snap together wood and the small bathroom which is laminate. The floors were pretty dirty between their pre-existing state and then adding in coffee grounds etc well lets just say it was a very thorough trial.

I did wear my breathe healthy mask, the thicker one with smaller microns while sweeping and mopping.

Let's start with biggest positive first, I never realized that I made so many efforts to keep Lillian and her things away from the cleaners! When she was little I was hyper paranoid about it and that is when I started looking into other options but didnt follow through so I used to 'rewash' with just water and a towel wherever she was crawling. Luckily crawling didnt last long. Well I realized that I never really spray too heavily around the eating area or her toys or her room and today I went to TOWN!

Jared and Lillian got home part way through my down stairs mop, normally I try to do it when she is not around ---again that wasnt really a though thing any more though it was when she arrived. She got home and wanted to help of course. Normally I would have made her sit on the couch or go upstairs where I wasnt mopping but I was able to let her run around--even without her shoes on without fear which was really a huge bonus.

The other nice thing was that since I was just using the vinegar I was able to multi-task better. I used something that left the floors with a bit of a shine ie waxy residue and so I took care not to spray the trim etc since it then collected dust better, this time I didnt worry about it and then I was able to take a towel and run it along the dust prone areas of the trim so a big 2 in 1! and I saved on the swiffer duster that I normally would have used ($$$$) plus the vinegar cleaned some dirty spots off the trim as I was going that the swiffer of course wouldnt have. Normally I end up letting that build up until I do all the trim at once---what a chore!

I thought Jared would complain about the smell when he got home but he didnt, whether he didnt mind or is trying to be supportive I am not sure yet but it wasnt as bad as I had feared. I think I could get used to it and I didnt seem to 'linger' of course we also have ceiling fans/bathroom fan in every room and the stairway so that helps.

As far as the efficiency I did have to spray more than the cleaner I used to use but that is mostly because it didn't add a 'slippery layer' but cost for cost it was still cheaper despite using more.

There were some areas of 'high traffic' that I could have used some grease cutter factor on but that was due to the condition to start with! Perhaps I could have a 'special potion' for those high traffic days. As it was it just took a bit of extra rubbing and it wasn't bad so maybe I just need to buff up a bit!

Oh, and no asthma, no wheezing, no smell, again I never really had huge problems with it but it did affect me for sure though I didnt really consciously think about it I hated mopping and I would always get short of breathe a bit and try to get hubby to mop instead (one chore he pretty much refuses to do).

I am going to try and MSDS the ingredient list later on but I cant find the stuff online right now.

Overall Review:
Efficiency B
SafetyA++++
CostA++++ (it was 2 for a jug and I 'might' have used 0.10 worth)

If you use a regular mop I also just found this online--maybe I will try it if I want to add the shine factor back in.

Step1
Combine 1/2 cup vinegar and a of gallon of warm water in a bucket. Use this to clean the floor. The acid in the vinegar cuts through oil, dirt and grime. Be sure to rinse the floor with clean water before polishing.

Step2
Mix 1/2 cup vinegar and 1/2 cup vegetable oil in a bucket. This is a wood floor polish that you buff into the floor with a soft clean cloth. The oil adds a little shine to your floor while the vinegar prevents the oil from sitting on top of the wood and making to floors greasy.

Step3
Store the mixtures in a cool and dry area. Vinegar has an almost indefinite shelf life. Due to the acidic nature of it, it's self preserving and doesn't require refrigeration. The polish however contains oil and will separate, requiring shaking prior to the next use.

Multiple Chemical Sensitivities

2009-02-28T17:48:00.000-08:00

Now I am by no means saying I or anyone else has this BUT in reading my book home safe home which is very outdated they mentioned something interesting.........(below) so I wondered what was out there 'today' almost 22 years later on the topic.

Quote: "Multiple chemical sensitivities (MCS) is now fairly widely known and accepted by at least par tof the medical community. A peron becomes sensitive through immune system damage caused by either a one time dangerously high level exposure or continous low level exposure such as is found in modern homes and office buildings. Once the damage is done, all sorts of low level exposures, such as to perfume or cleaning products, can cause symptoms. All sorts of symptoms are possible, including dizzines, fainting, itchy, burning eyes, runny or congested nose, dry throat, shorteness of breath, asthma, upset stomatch, diarheah, menstrual problems, extreme fatigue, insomnia, memory lapses, poor concentration, depression, and behavioral changes."

Here is what I would have to guess would be the best site for up to date info:
http://www.multiplechemicalsensitivity.org/

If anything it does seem the CF population would be at a higher risk for this and less likely to pick it up since it would most likely be 'par for the cf course' whether it showed up as athritis like or breathing like symptoms.

Interesting food for thought

Five Non Toxic Housecleaning Basics

2009-02-28T17:42:00.000-08:00

Good Housecleaning: Five Non-Toxic, Get-the-Dirt Out Basics
Annie Berthold-Bond Issue 112, May/June 2002

My friend Rachel is pregnant with her second child. Like many pregnant women, she is distilling all of society's free-floating anxiety about exposure to toxic chemicals into nine months of serious worrying. Rachel asked me to teach her how to do nontoxic cleaning, and she was pleasantly surprised to find out how easy and effective it can be.

There are five basics that I use for nontoxic cleaning: baking soda, vinegar, a good soap or detergent, washing soda, and tea tree oil. I believe you can clean everything in the house with these items. Rachel liked the simplicity of having to learn about only five ingredients. She also felt less vulnerable the more she took charge of the number of chemicals coming into her house.
My rule of thumb about nontoxic cleaning is this: use only ingredients that have been used without harm for so many years that they are "generally regarded as safe"; otherwise they would have long since been abandoned.

Baking Soda A commonly available mineral full of many cleaning attributes, baking soda is made from soda ash and is slightly alkaline (its pH is around 8.1; 7 is neutral). It neutralizes acid-based odors in water and adsorbs odors from the air. Sprinkled on a damp sponge or cloth, baking soda can be used as a gentle, nonabrasive cleanser for kitchen countertops, sinks, bathtubs, ovens, and fiberglass. It will eliminate perspiration odors and even neutralize the smell of many chemicals if you add up to a cup per load to the laundry. It is also a useful air freshener and a fine carpet deodorizer.

Washing Soda A chemical neighbor of baking soda, washing soda (sodium carbonate) is much more strongly alkaline, with a pH around 11. It releases no harmful fumes and is far safer than a commercial solvent formula, but you should wear gloves when using it because it is caustic. Washing soda cuts grease, cleans petroleum oil, removes wax or lipstick, and neutralizes odors in the same way as baking soda. Don't use it on fiberglass, aluminum, or waxed floors, unless you intend to remove the wax. Washing soda is found in the laundry section of most supermarkets.

Vinegar Vinegar is a mainstay of old folk recipes for cleaning, and with good reason. The vim of the vinegar is that it kills bacteria, mold, and germs. It is also the opposite of baking and washing soda; it is acidic and therefore neutralizes alkaline or caustic substances. If your tap water is hard and you have trouble with mineral buildup (which looks like a corroded dirty powder), soak a cloth in vinegar and rest it on the problem area for a few hours. The acid will break down the minerals and they can be wiped away. Acids dissolve gummy buildup and eat away tarnish. I have also found vinegar particularly good for removing dirt from wood surfaces.

Heinz company spokesperson Michael Mullen references numerous studies to show that a straight 5 percent solution of vinegar kills 99 percent of bacteria, 82 percent of mold, and 80 percent of germs (viruses). Heinz's packaging cannot claim that vinegar is a disinfectant, since the company has not registered it as a pesticide with the Environmental Protection Agency (EPA); however, it seems to be common knowledge in the industry that vinegar is powerfully antibacterial. (The CBS news show 48 Hours aired a special report on tests from the Good Housekeeping Institute showing this.) Use white distilled vinegar, since apple cider vinegar can leave stains.

Soap or Detergent Many people are confused about the difference between soaps and detergents. Both are surfactants, or surface active agents, which basically means they are washing compounds that mix with grease and water. But soaps are made of materials found in nature, and detergents are synthetic (although some of the ingredients are natural); they were developed during World War II, when oils to make soap were scarce.

There is little doubt that soap is better for your health and the environment than detergents. Detergents are very toxic to fish and wildlife. Washing with soap has a big drawback, however--the minerals in water react with those in soap, leaving an insoluble film. This can turn clothes grayish, and the film can leave a residue (such as is found on shower stalls, for example). Detergents react less to minerals in water and, for all practical purposes, are the product of choice for laundry, unless you have very soft water. Those of you with hard water, which has a high mineral content, undoubtedly already know this. If you do use detergent, you can ensure the least possible damage to the environment by selecting the most biodegradable products. (See For More Information) Health food stores carry brands of detergent made with renewable materials instead of petroleum-based ingredients, and with natural essential oil fragrance and no dyes. They also sell liquid vegetable-oil soap called castile soap.

Tea Tree Oil A friend once offered me a very beautiful but musty bureau. I thought that setting the bureau in the sun for a day or two might kill the mold, but that didn't do the trick. Much to my surprise, the solution I finally discovered was easy, used all natural materials, and removed 100 percent of the musty smell.

I have found three natural ingredients that kill mold: tea tree oil (an essential oil found in most health food stores), grapefruit seed extract, and vinegar. Each has its pros and cons.

Vinegar is by far the cheapest.

Tea tree oil is expensive, but it is a broad-spectrum fungicide and seems to kill all the mold families it contacts; the problem is that it has a very strong smell, but that dissipates in a few days.

Grapefruit seed extract is also expensive but has no smell.

Mold can be dangerous to your health, even if you aren't allergic. Many people react to mold by getting tired and even depressed. Try to stay on top of moisture and mold as soon as either arises. Dry out anything that is damp, such as basements (use a dehumidifier) and carpets. Fix leaks in plumbing and roofs. Wipe up spills. Make sure water doesn't escape from shower curtains. Vigilance will pay off!

My Seven Favorite Recipes

Creamy Soft Scrubber ½ cup baking soda liquid detergent Pour the baking soda into a bowl and add enough liquid detergent to give the mixture the texture of frosting. Scoop it onto a sponge to wash surfaces. This is the perfect recipe for cleaning the bathtub, because it rinses easily and doesn't leave grit.

Window Cleaner 1/4 to 1/2 teaspoon liquid detergent 3 tablespoons vinegar 2 cups water Put all the ingredients in a spray bottle, shake it, and use as you would a commercial brand. The detergent in this recipe is important--it cuts the wax residue left by products you might have used in the past.

Oven Cleaner 1 cup or more baking soda water squirt or two of liquid detergent Sprinkle water generously over the bottom of the oven, then cover the grime with enough baking soda that the surface is totally white. Sprinkle more water over the top. Let the mixture set overnight. You can easily wipe up the grease the next morning because the grime will have loosened. When you have cleaned up the worst of the mess, dab a bit of liquid detergent or soap on a sponge and wash the remaining residue from the oven. Note: If this recipe doesn't work, you probably didn't use enough baking soda and/or water.

All-Purpose Spray Cleaner 1/2 teaspoon washing soda dab of liquid soap 2 cups hot tap water Combine the ingredients in a spray bottle and shake until the washing soda has dissolved. Apply and wipe off with a sponge or rag. Furniture Polish 1/2 teaspoon oil, such as olive (or jojoba, a liquid wax) 1/4 cup vinegar or fresh lemon juice Mix the ingredients in a glass jar. Dab a soft rag into the solution and wipe wood surfaces. Cover the glass jar and store indefinitely.

Vinegar Deodorizer Keep clean spray bottles filled with straight 5 percent vinegar in your kitchen near your cutting board and in your bathroom, and use them for cleaning. I often apply the vinegar to my cutting board before going to bed and let it set overnight. The smell of vinegar goes away within a few hours. Straight vinegar is also great for cleaning the toilet rim. Just spray it on and wipe off.

Mold Killer
1: Tea Tree Treasure 2 teaspoons tea tree oil 2 cups water Nothing natural works as well as this spray for mold and mildew. I've used it successfully on a moldy ceiling and shower curtain, and a musty bureau and rug. Tea tree oil is expensive, but a little goes a very long way. It also has a very strong odor, but that dissipates in a few days. Combine tea tree oil and water in a spray bottle, shake to blend, and apply to problem areas. Do not rinse. Leave in the bottle-it has a long shelf life.

Mold Killer 2: Citrus Seed Extract 20 drops citrus seed extract 2 cups water The advantage of using citrus seed extract instead of tea tree oil for killing mold is that it is odorless. Combine the citrus seed extract and water in a spray bottle, shake to blend, and apply to problem areas. Do not rinse. Leave in bottle-it also has a long shelf life.

Mold Killer 3: Vinegar Spray Straight vinegar reportedly kills 82 percent of mold. Pour some white distilled vinegar into a spray bottle and apply to moldy areas. Let set without rinsing, if you can put up with the smell, which will subside in a few hours.

FOR MORE INFORMATION
Books Bower, Lynn Marie. The Healthy Household. Healthy House Institute, 1995. Dadd, Debra Lynn. Home Safe Home. Jeremy P. Tarcher/Putnam, 1997. Steinman, David and Samuel S. Epstein. The Safe Shopper's Bible. Macmillan, 1995.

Websites www.care2.com/healthyliving Hundreds of everyday solutions for a healthy lifestyle. www.checnet.org Free monthly e-mails from the Children's Environmental Health Coalition, offering simple steps to keep your baby in a healthy home. Also offers the video Not Under My Roof! Protecting Your Baby from Toxins at Home with Olivia Newton-John and Kelly Preston. www.greenmarketplace.com Shopping for the green home. www.scorecard.org This Environmental Defense website is an excellent resource for information about specific chemicals found in household products. Enter the name of a chemical in the search box, and you will be told about its toxicity and what regulatory lists it is on. www.seventhgen.com Environmentally friendly, nontoxic household cleaners and products, plus information on household toxins such as chlorine. Annie Berthold-Bond is the Healthy Living content producer for Care2.com and the author of a number of books, including Better Basics for the Home (Three Rivers Press, 1999) and Clean & Green (Ceres Press, 1990). She lives in Rhinebeck , New York .

Good, Clean Fun, How to Clean Your House (GREEN GUIDE)

2009-02-28T17:37:00.000-08:00

Good, Clean Fun
How to clean your house without hurting the planet

By The Green Guide
18 Mar 2003

If you think of your home as a haven from pollution, we've got some bummer news. Levels of pollutants in indoor air can be from two to more than 100 times higher than outdoors, according to the U.S. EPA. That indoor pollution is due in large part to volatile organic compounds (VOCs) that evaporate, or "offgas," from home decorating and cleaning products.
Make your home clean and green.

So if the weather cooperates, step one for green cleaners is: Open a window and let those pollutants out! Yet even in the spring and summer, when a vase of daffodils can fill a room with a lovely natural scent, many consumers stubbornly keep using synthetic room fresheners and fragranced cleaning products that are full of VOCs and other toxic chemicals. These can make our indoor air unhealthy, provoke skin, eye, and respiratory reactions, and harm the natural environment.

Take those so-called air fresheners. According to a study published in New Scientist in 1999, in homes where aerosol sprays and air fresheners were used frequently, mothers experienced 25 percent more headaches and were 19 percent more likely to suffer from depression, and infants under six months of age had 30 percent more ear infections and 22 percent higher incidence of diarrhea.

In choosing alternatives, however, consumers need to be alert to greenwashing. "Just because a product says it's natural doesn't mean it's nontoxic," says Jeffrey Hollender, CEO of Seventh Generation, which produces genuinely eco-friendly cleaning supplies and household products. The word "natural" is undefined and unregulated by the government and can be applied to just about anything under the sun -- including plastic, which comes from naturally occurring petroleum. Because no standards exist, claims such as "nontoxic," "eco-safe," and "environmentally friendly" are also meaningless, according to Consumers Reports' Eco-labels website.Instead of being taken in by slogans, David Steinman, coauthor of The Safe Shopper's Bible, advises looking at labels for specific, eco-friendly ingredients that also perform effectively. These include grain alcohol instead of toxic butyl cellosolve as a solvent; coconut or other plant oils rather than petroleum in detergents; and plant-oil disinfectants such as eucalyptus, rosemary, or sage, rather than triclosan.

You can also mix your own cleaners, as does Annie Berthold-Bond, green living editor at Care2.com and author of Clean and Green and Better Basics for the Home. According to Berthold-Bond, a few safe, simple ingredients such as plain soap, water, baking soda (sodium bicarbonate), vinegar, washing soda (sodium carbonate), lemon juice, and borax can satisfy most household cleaning needs -- and save you money at the same time.

If you're in the mood to detoxify, getting rid of germs doesn't have to mean overkill: This is your home, not a hospital. In 2000, cleaning products were responsible for nearly 10 percent of all toxic exposures reported to the U.S. poison control centers, accounting for more than 206,000 calls, over half of which concerned children under the age of six. According to Philip Dickey of the Washington Toxics Coalition, the most acutely or immediately hazardous cleaning products are corrosive drain cleaners, oven cleaners, acidic toilet-bowl cleaners, and anything containing chlorine or ammonia (which should never be combined -- see below).Read on to get the dirt on various conventional products and ingredients and their eco-friendly alternatives. With a little effort, you can make your home a truly clean haven rather than a chemical storage tank.
Dish Detergents, Laundry Detergents, and All-Purpose Cleaners

Problems:

It's a wash.

Most conventional dish and laundry detergents are made from petroleum, a nonrenewable resource. Some detergents contain alkyphenol ethoxylates, which are suspected hormone disruptors that don't readily biodegrade and can threaten wildlife after they go down your drain. Ethoxylated alcohols in liquid detergents can contain carcinogenic 1,4-dioxane.The fragrances in detergents and fabric softeners can contain phthalates, chemicals that have been linked to cancer and reproductive-system harm in animal lab tests.

Fragrances may also trigger asthma and allergic reactions, with symptoms including skin and respiratory irritation, headaches, and watery eyes. Although phosphates, which choke waterways, are no longer used in most dish and laundry soaps, they can be found in dishwasher detergents. Phosphates are highly caustic and can be fatal if swallowed.Other ingredients turn dangerous when combined: Diethanolamine and triethanolamine can react with nitrites (an often undisclosed preservative) to form carcinogenic nitrosamines.

Solutions:

Use laundry soaps labeled "fragrance-free," advises Harvey Karp, a Los Angeles pediatrician and author of The Happiest Baby on the Block. If you want to use citrus-oil products, sniff-test a small amount from a few feet away, as these products can be irritating to allergic or sensitive individuals. Karp also advises choosing dish and laundry detergents and all-purpose cleaners that are plant-based (corn, palm kernel, or coconut oil).To remove stains from clothing, try soaking fabrics in water mixed with borax, lemon juice, hydrogen peroxide, washing soda, or white vinegar. Or, look for "non-chlorine bleach" made from sodium percarbonate or sodium perborate, available from Bio Pac, Ecover, Naturally Yours, Shaklee, or Seventh Generation.Fabric can be softened by adding one-quarter cup of baking soda to the wash cycle; this recently worked on several pairs of catalog-bought cargo pants made of a cardboard-stiff cotton that literally scraped a teenager's skin. A quarter cup of white vinegar will also soften fabric, as well as eliminate cling.Less toxic products include Ecover and Seventh Generation laundry and dish soaps; Aubrey Organics and Vermont Soapworks all-purpose household cleaners; and Bioshield and Naturally Yours dishwasher detergent.
Antibacterial Soaps and Cleansers, Bleach, Stain Removers, Disinfectants, Glass Cleaners, and Bathroom Scouring Powders (Whew!)

Problems

Popular in liquid form, antibacterial soaps are helping to promote growth of resistant bacteria, according to a 2000 World Health Organization report.Chlorine bleach, a common disinfectant frequently found in scouring powders and cleaning solutions, is highly caustic, meaning it can burn skin and eyes -- plus it can be fatal if swallowed. When it travels from your drain into the natural world, it can create organochlorines, which are suspected carcinogens as well as reproductive, neurological, and immune-system toxins. And be warned: Bleach (also known as sodium hypochlorite and sodium hydroxide) should never be mixed with any product containing ammonia or quaternium compounds. Doing so creates highly toxic chlorine gas. Many conventional scouring powders and cleaning solutions contain chlorine bleach.

Solutions

Instead of using antibacterial soap, Karp recommends thorough hand-washing (about two minutes' worth) with plain soap and warm water. To disinfect bathroom or kitchen surfaces, try Earth Power's EPA-registered herbal disinfectant or Seventh Generation sanitizers. White vinegar helps kill bacteria, mold, and viruses, according to Berthold-Bond, who uses it on everything from kitchen surfaces to toilet seats. However, the only foolproof way to kill food-borne pathogens such as salmonella or E coli is to use hot, soapy water to wash all cutting boards, dishes, knives, and surfaces that have touched raw meat or eggs.

Oops, you missed a spot!

Scrubbing sinks, tubs, and countertops with a paste of baking soda and water effectively removes dirt rings and some stains; if that doesn't work, try a paste of washing soda and water, and be sure to wear gloves. Commercial non-chlorine bleach products include Bon Ami scouring powder and cream cleansers from Earth Friendly, Ecover, and Seventh Generation.For cleaning windows, fill your own spray bottle with water and either one-quarter cup white vinegar or one tablespoon lemon juice to cut grease. Safer commercial glass cleaners are made by BioShield, Earth Friendly, Naturally Yours, and Seventh Generation.
Drain, Oven, and Toilet-Bowl Cleaners

Problems

The corrosive ingredients in these products can severely irritate eyes, skin, and the respiratory tract, and can be fatal if swallowed. Chemical drain cleaners are among the most dangerous of all cleaning products, containing sodium hydroxide and sodium hypochlorite (bleach) that can permanently burn eyes and skin. In oven cleaners, lye and sodium hydroxide can burn skin, eyes, and the respiratory tract.

Solutions

For drains, a plunger "snake" plumbing tool should first be used to bring up as much of the clog as possible, giving cleaning products room to work, or perhaps eliminating the need for them entirely. Earth Friendly and Naturally Yours drain cleaners use enzymes, rather than caustic chemicals, to dissolve obstructions. Don't forget to prevent future blockage with inexpensive metal or plastic drain screens, available at most home-improvement or hardware stores.To clean oven surfaces, coat them in a paste of water and baking or washing soda and let stand overnight, then scrub off the paste while wearing gloves. Among commercial products, EnviroSafety's plant-based multi-purpose cleaner works well. Or you can use the non-chlorine scouring powders and creams listed above. To prevent future buildup, line the oven floor with aluminum foil and wipe oven walls and ceiling clean after each use. For toilets, forget the fancy stuff: Again, use the simple, non-chlorine scouring powders and creams listed above, or try AFM SafeChoice or Ecover toilet cleaners.

Furniture and Metal Polishes

Problems

These are corrosive and may cause eye, skin, or respiratory tract irritation. They can also contain nerve-damaging petroleum distillates or formaldehyde, a carcinogen.

Solutions

Polish furniture with a mixture of one teaspoon olive oil and one-half cup white vinegar, or look for solvent-free products that use mineral or plant oils, such as Earth Friendly furniture polish or Hope's lemon oil. As your grandmother probably knows, silver can be kept clean with toothpaste. Copper can be polished using a cloth dipped in white vinegar or lemon juice with salt dissolved in it; just rinse with water when you're done. You can shine your brass with a paste made from one teaspoon salt, one cup white vinegar, and one cup flour. Or, use Kleen King copper and stainless steel cleaner, Twinkle copper and silver polishes, or Hope's brass and silver polishes.

Air Fresheners and Other Perfumed Products

Problems

Aerosol propellants contain flammable and nerve-damaging ingredients as well as tiny particles that can lodge in your lungs. Fragrances of all kinds can provoke allergic and asthmatic reactions.

Solutions

If the air outside is clean, open your windows and ventilate the natural way. An open box of baking soda removes odors. (If you're feeling Martha Stewart-ish, you can decant it from the box into a pretty bowl.) Cedar blocks or sachets of dried flowers and herbs provide gentle scents -- but avoid any potpourri that lists unspecified "fragrance" on the label; this could mean synthetic chemicals, including phthalates. Look for products scented with essential plant oils, such as lemon, verbena, or lavender.Finally, we cannot stress enough that you should avoid aerosol sprays in any product, as they disperse ingredients through the air and make them easy to inhale. Even nontoxic ingredients can irritate eyes, noses, and lungs. Carelessly shaken powders can also spread through the air and cause irritation.
Now Get to It!
Most of the eco-friendly products mentioned above can be found in supermarkets or natural-food, hardware, and home-improvement stores -- or online. For more complete info and further tips, see the Green Guide website, and check out the green-cleaning advice in Grist's book, Wake Up and Smell the Planet.And remember: When it comes to green cleaning, less is definitely more!

Air Fresheners Linked to Lung Damage

2009-02-28T17:34:00.000-08:00

Given this most recent bout inflammation for me happened after moth ball exposure I am thinking ALL those totes (in basement) are going outside on big clothes lines this summer for a WEEK and then paying someone to take them to a laundry mat to clean them all--what a mistake!

Air Fresheners Linked to Lung Damage
Chemical in Air Fresheners, Toilet Deodorizers, Mothballs Cuts Lung Function

By Daniel J. DeNoonWebMD Health News
Reviewed by Louise Chang, MD

July 27, 2006 -- A chemical found in air fresheners, toilet deodorizers, and mothballs -- and in the blood of 96% of Americans -- may harm the lungs.

The finding comes from a National Institutes of Health study that measured lung function and blood levels of 11 household chemicals in 953 U.S. adults. All 11 chemicals are volatile organic compounds -- chemicals given off as gasses from common household products.
Only one was linked to lung damage: 1,4-dichlorobenzene or 1,4-DCB. You know what it smells like -- mothballs. It's most often used in room deodorizers, urinal and toilet-bowl blocks, and, yes, mothballs.

The 10% of people with the highest blood levels of 1,4-DCB did 4% worse in a test of lung function than the 10% of people with the lowest blood levels of the chemical, found Stephanie J. London, MD, and colleagues at the National Institute of Environmental Health Sciences (NIEHS).

The researchers called this a "modest reduction" in lung function. But they warn it could be serious for people who suffer asthmaasthma or other lung problems. And the reduced lung function test linked to 1,4-DCB is also a risk factor for heart diseaseheart disease, strokestroke, lung cancerlung cancer, and death from any cause.
"Even a small reduction in lung function may indicate some harm to the lungs," London said, in a news release.

A 2005 study found that the risk of asthma in children age 6 months to 3 years goes up as their home 1,4-DCB exposure increases."This research suggests that 1,4-DCB may exacerbate respiratory diseases," said NIEHS director David A. Schwartz, MD, in a news release.
In some homes and public restrooms, the CDC has detected 1,4-DCB levels that exceed the Environmental Protection Agency's minimal risk limit for long-term exposure.
London suggests that people can limit their exposure to 1,4-DCB by reducing their use of products containing the chemical. But that may not be entirely successful.

A 1987 study by the Environmental Protection Agency found 1,4-DCB in the air of 80% of U.S. homes surveyed. Only a third of these homes used products containing the chemical.
The new findings appear in the August issue of Environmental Health Perspectives.

More Green Changes--sort of

2009-02-28T17:19:00.000-08:00

Well I am looking for some hair items without alot perfumes etc, seems if they are closest to my face and I sleep breathing them in this makes sense. But I am not committed to it until I find something that will work. That being said this summer I got some GREAT deals on my haircare items and stocked up. Well I have had them all in my bathroom closet and the closet does smell when I open it up. Now that I am doing my Neil-Med rinse every day and that is where I keep the stuff I figured a good part-way change would be to continue to use the products while I look for alternatives but to STORE them in the basement so I wasnt being exposed to them en-mass for no reason.

Here is what I HAD in my closet (just 2 of 4 shelves LOL)................

Here is what I removed from my closet!

Now if I can find an alternative I have to decide if I want to sell this all at a garage sale in the spring or donate it to womens shelter. Women's shelter I can get full MSRP off my taxes and do a good deed but it is so much I am afraid it would cause a red flag (IRS wise)--since I already have alot other stuff ready to go there too. Or I could just donate it and not worry about the credit I suppose though lowering my taxes is a big happy spot! Garage sale would be interesting, especially since I have a ton of cleaners to decide same thing about. Who knows maybe that is against law to sell so much stuff en mass LOL. Last year I did it with a table of HBA I had gotten for free and made over $50--the stuff went like hot cakes!

Green Cleaning Experiment

2009-02-28T11:39:00.001-08:00

Ok so my first week on the green cleaning experiment. Total cost experiment $5.

Here is what I have tried so far:
two large bottles hydrogen peroxide with spray tops inserted $2
two large spray bottles 50% distilled white vinegar/water $2 for HUGE bottle
two small boxes baking soda $1 for 2 boxes

My goal is to clean as many things as simply as I can and then branch out to 'specialized' products where I cant fill the niche or find a simple way. I would prefer to buy as little 'fancy' products as possible for the economical as well as convenience reasons.

I will start documenting what I try, what works, what doesn't. Perhaps one thing will work most of the time but I will need some 'strong cleaner' once in a while I can have someone else do, we shall see.

Today I did the bathroom downstairs and upstairs, not a deep clean just overall regular clean up.

I used vinegar water on the mirror-A+

sprayed toilet, washer, dryer and cabinet with hydrogen peroxide-A

sprinkled baking soda in sink and used scratch pad-B+ (required more rinsing than say ajax but worked very well)

followed up bathroom sink fixture with vinegar water due to streaky look after baking soda-A+

sprayed the floor with hydrogen peroxide, I tend to hand clean bathroom floors because I just dont think they get cleaned well otherwise. So I sprayed it, let it sit while doing the other stuff and then since this wasnt a 'scrub day' I used a paper towel to go around all baseboards behind toilet getting any dust balls, lint, hair etc, threw that away then used a small towel to wipe the tile down. The floor dried fine, looks good, no dirt/hair, germies are gone, I think I am happy with that. Since peroxide will kill germies (have to look into this further)and has no smell it was my first choice to try, we shall see what works best in long run.

I tackled the tub after letting baking soda sit in it and using green scratchy pad. It was wonderful as I could clean and not shoo DD out of the room for fear of her breathing in ajax. I could scrub more vigorously because I was not trying to hold my own breath! It worked well for 95% of everything. The only thing I would like is too look into something I can spray on shower walls for a 'soak' and something that has some soap scum cutting ability for that path directly under the soap holder. Overall B+.

I did this cleaning while wearing my breathe healthy mask-C Now I give it a see but only because of my comfort. I am not used to wearing a mask and I breathe funny when wearing them, I expect this to be A once I get 'used' to it.

OVERALL=A+++ it looks nice and clean and it was CHEAP and most importantly it didnt hurt my breathing ONE BIT. Used to be after I cleaned bathroom I took out trash because of all the paper towels and other contaminated smelly stuff I had used, then I would leave bathroom fan on forever and try not to use it. There was NO smell! Hooray. I think we have a winner.

PS wear gloves when using peroxide!!! Trust me I forgot!

I will try to post the more 'fancy' ideas once I find them LOL!

Our budget Dave Ramsey

2009-02-28T06:30:00.000-08:00

Someone asked us about our debt snowball, budget plan etc. If you have read total money makeover this will make sense, if you haven't go get it!

It takes 3 months minimum to get a budget that even comes close to working so dont beat yourselves up. Our budget has evolved over time we have had a huge variance on our amoutns we set over just the past year. We have decided we are DONE with debt and we are as lean as we can get. We now value being free and clear more than our comforts and frivalities that we can add back later.

So the only frivalities we have in our budget is my gym membership which for health reasons is a necessity. We do not feel constrained or stressed, we are actually happier than we have ever been. We started out with alot other funds and as summer approaches we may re-visit having a tiny vacation fund and as the year progresses we will start a small christmas fund ---keeping in mind we got super intense in the fall08 and our christmas budget was $200 total.

We have cut out: xm, more expensive internet (we still have to have high speed for our work), home phone, all extras on the cell phones (Dh's work pays for most and we end up paying like $20 to have mine added on), and cable.

Envelope System All Cash Basis ($ listed per week):

$110 Household (this includes all food, household consumables, HBA, cleaners, lightbulbs toilet paper what have you) It was too much hassle to have it separated out IMO. The 10 actually goes to savings for our 'meat' fund and I put 100 in envelope.

When we started getting serious DH would work overtime and take side jobs. I was kind of let down since I am salary so I started looking in to ways to trim our household budget. I found I could cut out equivalent of a part time job from my budget by couponing among other things. So my budget for this is pretty low. I am working on getting it lower in the spring I had planned to be down to $85 and $10 but I have recently went green on cleaning products and some health beauty aids so that ups the cost a bit so for now I am just shooting to maintain this level.

People assume because I coupon that we must eat like crap, we dont! We eat almost exclusively whole grain, lots fruits veggies, I buy beef and hog from a farmer and chicken some organic some not when it goes on sale I buy ALOT. I used to buy organic milk but now I have found some cheaper ones that are BGH free so that is 'good enough' for now. I have slowly found subs for our budget busters. I cook, I dont use ton convenience foods, we rarely eat out. Anything like 'stopping for coffee' comes out of our spending money. I stockpile when things are cheap, plan weeks meals around veggies that are on sale when I can, we have learned to adapt to more bananas and apples and less raspberries and melons etc. I use dried beans, buy rice in bulk that isnt instant etc etc etc.

I also try to buy any 'kitchen items' out of this for instance I just had to replace my george foreman grill ( a must for me), a large pan, a large measuring bowl, and a collander. I went lean on grocery budget planning around mostly things I had and buying bare bones and managed to scrape buying these items out of grocery budget but if I couldnt have done it we would have used 'home improvement' budget.

$30 'spending money' We each get $15, this used to be significantly higher but we got more intense and cut it down from $30. I pack DH's lunch and coffee each morning and he has almost stopped going out to eat etc. For first time ever I see him saving his money when he wants something its amazing! I always pack my lunch and dont buy sodas etc so the $15 isnt as hard for me though I used to augment my clothing or entertainment money with spending money I would save up so that has been an adjustment.

$30 Clothes (separated by me, dh, DD) This also included at times diapers, wipes though alot times I bought that with grocery money. It also for DD pretty much includes everything for her whether its a new toy, shoes, etc. Yes this clothing budget is hard for me!!!! And I did get $400 last fall before I lowered my clothing money as I needed gym shoes, bras, etc so the $10 week is purely maintenance for me right now.

$10 Entertainment (we rarely do eating out but when we do sometimes I go from grocery if I have the extra, other times from entertainment. Depends on reason why too if I just dont feel like cooking then probably groceries but if we are 'going out' then entertainment --if that makes sense). We have gotten creative with things to do for entertainment that are cheap or free, we visit family more too. We may double this at summer time since there is more to do etc not sure yet.

$20 Charity. This is a source disagreement for DH and I. I would like to do more charity DH does not. Deal is once we are debt free I can tithe and do my charity soooooo right now I still do give a signficant amount to charity via my grocery fund to woman's shelter and food bank when I get good deals via my couponing hobby.

$5 Gifts. Last year we had alot weddings etc and I had to up this. Not expecting that this year. How $5 you ask? For instance, my birthday was in Jan we did $20 spending cap but DH had been saving his 'blow money' and added to this. We got our niece and nephew that live in town a small birthday gift. We just dont do alot gifts. For xmas I made alot 'food' gifts for family, we spent $100 on charity and included what we had done in lieu of gifts in the letter. DH and I did not exchange gifts this year but we had a blast buying and giving the gifts to charity, I didnt feel 'down' at all. DD got $50 spent on her from us and a significant amount for grandparents, I used that $50 and bought her a little tikes kitchen off of craisglist and clearance shopped like crazy--she actually got ALOT stuff too much with all grandparents added in there!

For house and car repairs we have a $50 fund that we keep for small this and that items. DH does most all of our repairs so we can keep it low. We used to do $50 week for each when we had some things we had to have worked on. Now if we have a large expense coming up (we had to buy new tires) we will budget for it and save additional. Or this week we had to buy part for exhaust fan in bathroom so whatever DH used out of the $50 we will bump back up to the $50 next week. This summer we have to buy gutters (not a want long story LOL) so we are figuring out how much that will cost and will start setting it aside bit by bit.

Ok that is probably more explanation than you wanted but that is where we are at and yes it is GAZELLE but it is great! Goodness this took forever to explain I hope someone finds it useful and you're not all thinking I'm nuts LOL!

Nicole & Jared
debt free date: Apr2010 or SOONER

interesting asthma medication classes

2009-02-25T18:00:00.000-08:00

was doing some background site link searching for a friends whos hubby has managed to live with asmtha most his adult life but done a horrid job maintaining it so she wants to learn more. I found this useful reference tool though I need to actually more thoroughly read it and make sure its 100% factual.

http://www.radix.net/~mwg/medclass.html

Organizing & Updates

2009-02-23T17:33:00.000-08:00

I am trying to go through some of my old docs to get my references in line in my blog, I will do it here and there, its a work in progress, I hope to soon add some info in regards to green cleaners and my experiments with them.

I have been challenged and gladly accepted to investigate the irritants in my home. I have the book home safe home and have gotten started already! Here are all the cleaners I removed from my bathrooms and kitchen YIKES!! Yes that entire tote is full and that doesnt include removing dish soap or laundry products that will take an act of well...something big for DH to get rid of his fabric softener and such, one step at a time! The purple tote on top is all kids soap and shampoos!

I also removed all the HBA for Lillian, that has long since bothered me. Why are kids products so perfumed they smell good on their own. I stopped using them for a bit and then slid back into it. I kept her scent free good lotion and will get a new bath wash/hair wash for her. She smells just fine on her own!

Since I do couponing I stockpile when its on sale so the pictured items dont count all the bulk stuff in basement LOL. That is mostly the 'smellies' that I used like glade plug ins. I stopped using previously on my own, initially I could only use the 'clean' smells like clean linen but not much else, then I found them irritating all of the sudden so I chucked them all in the basement and plan to sell them off in my spring garage sale I have a HUGE tote of them as they were a 'money maker' for a long while so why not buy them LOL--well now I do have a reason they are irritating, literally!

Calculating Maximum Heart Rate

2009-02-23T17:28:00.000-08:00

Finding Your Maximum Heart Rate and CalculatingYour Heart Rate Zones
Heart Rate Calculator

Credit going to: http://www.fitzones.com/members/Fitness/heartrate_zones.asp#Karvonen%20Formula
The Heart Rate Calculator above calculates heart rate based on the Karvonen Formula. See Zones below for a description of the above.

Enter your Age, Resting Heart Rate and Maximum Heart Rate (If Known) then click Calculate
Top of Form
Age
Resting Heart Rate
Maximum Heart Rate
Light(50-60%)
Zone 1
Easy(60-70%)
Zone 2
Aerobic(70-80%)
Zone 3
Anaerobic(80-90%)
Zone 4
VO2 Max(90-100%)
Zone 5

Karvonen Formula

A very effective method of calculating your zones is by the Karvonen Formula. This formula takes into account your resting heart rate (RHR). Knowing your resting heart rate helps you to determine your Heart Rate Reserve (HRR) or working Heart Rate. Heart Rate Reserve (HRR) or working Heart Rate the difference between the Maximum Heart Rate (MHR) and Resting Heatt Rate (RHR). The greater the difference of your MHR and your RHR the greater your HHR or WHR. This is important because this tells you how great your heart rate intensities can be.

The best way to measure your resting heart rate (RHR) is when you first wake up in the morning and before you get out of bed. Simply count your pulse for 15 seconds beginning on the zero count and multiply by 4. You can do this for 5 days and then average the results. This is your resting heart rate. Keep in mind that lack of proper rest, stress and lack of proper nutrition, and medication can influence your RHR. One sign of over-training is an elevated RHR. By becoming aware of your RHR you can more closely become in-tuned with with how your body is reacting to different stimulus.

You will also notice that using the Karvonen Formula the percentages of MHR will be higher. This is because this method indicates more closely your actual VO2 Max. VO2 Max or Maximal Oxygen Consumption is the total capacity to consume oxygen at the cellular level. This represents the total maximum aerobic capacity of the muscle cells.
MHR - RHR = _____ x % = _____ + RHR = Karvonen Formula

For Example: MHR = 180. RHR = 60
180 - 60 = 120 x 70% = 84 + 60 = 144 bpm

180 - 60 =
120 x 50% = 60 + 60 (RHR) =
120 bpm (50%)
180 - 60 =
120 x 60% = 72 + 60 (RHR) =
132 bpm (60%)
180 - 60 =
120 x 70% = 84 + 60 (RHR) =
144 bpm (70%)
180 - 60 =
120 x 80% = 96 + 60 (RHR) =
156 bpm (80%)
180 - 60 =
120 x 90% = 108 + 60 (RHR) =
168 bpm (90%)

Once you know your percentages of max heart rate then you can exercise according to your goals and fitness capacity in the following heart rate zones.

Zone 1 (50 - 60% of MHR) - The lowest level you can exercise in and still increase fitness levels. For beginners or people who have not exercised for a long period of time. This zone can be for just improving your overall health. It can also be a good recovery zone for people who are over-training and need to take a break. This mode is also good for people who want to lose weight as the main source of fuel used by the body is fat stores.

Zone 2 (60 - 70% of MHR) - This is the zone where the heart begins to benefit. Training in this zone will begin improve your hearts ability to pump blood and improve the muscle cells ability to utilize oxygen. In this zone stored body fat is the primary source of energy utilized hence this zone is referred to as the weight management zone. This is a good zone for long slow distance exercise as the body becomes more efficient at feeding the working muscles more efficiently especially with fat as the main fuel source.

Zone 3 (70 - 80% of MHR) - This zone is the most effective for overall cardiovascular fitness and is often called the "aerobic zone" or "target heart rate zone". This is the optimal zone to workout in to increase your cardio-respitory capacity or the bodies ability to transport oxygenated blood to the muscle cells and carbon dioxide away from the cells. After a while you will be able to cover more distance during workouts in less time. Your body will burn less glucose and more stored fat as fuel thereby working more efficiently. This zone is also effective for increasing overall muscle strength.

Zone 4 (80 - 90% of MHR)(85-90%= Anaerobic Threshold) - this level is where you cross over from aerobic training to anaerobic training which is called the anaerobic threshold or AT. This is the point where the body cannot effectively remove lactic Acid from the working muscles quickly enough. Lactic Acid is a by product of glycogen consumption by the working muscles. This zone is primarily for people who want to increase their performance levels. You would characterize this zone as hard. During this zone your muscles are tired, your breathing is heavy and your fatigued. The benefit of training in this zone is you can increase your bodies ability to tolerate and deal with lactic acid for a longer period of time as the enzymes in your muscles responsible for anaerobic metabolism are increased. For competitors it is good to know your anaerobic threshold as many fit athletes can compete at or about their anaerobic threshold.
Zone 5 (90 - 100% of MHR)(VO2 Max) - You will only be able to train in this zone for short periods of time. You should not train at this level unless you are very fit. In this zone lactic acid develops very quickly as you are operating with oxygen debt to the muscles The value of training in this zone is you can increase your fast twitch muscle fibers which increase speed. You will not be able to stay at this level very long and should be used in intervals or sprinting work at the track.

My Huff Cough Technique

2009-02-23T17:22:00.000-08:00

I will add to this once I find the really good description of the two kinds of huffing I perform, I ran across the explanation somewhere and I think I saved a copy of it. Anyway I read the bit below 1-7 in a letter written by Dr.Warwicl to Amy who has a great blog http://noexcusesnoexcuses.blogspot.com/2009/02/azli.html and I extracted this bit for my personal reference.

Whenver I find my self lapsing I come back to remind myself. I do this followed by huffing and repeat. It has been very effective for me. The other thing I do is remind myself to huff throughout the day, like certain triggers for instance if I walk in to go to the bathroom I huff, driving down road I try to huff a few times, etc so its kind of an automatic response and reminds me through the day. This idea was also mentioned somewhere in a Warwick correspondence or his bell curve letter, I cant remember which.

I guess I do the positive pressure breathign of small breaths in until I feel I will explode followed by two varying forms of traditional huffing and then repeat the breathe holding scenario again. I repeat until dry or exhausted LOL.

1. To prepare the lungs and airways for the huff coughing technique, you must first expel all the stale air in your lungs and airways. Begin by slowing down your breathing. Take slow gentle breaths, ending with one slow exhalation lasting three to four seconds.
2. Inhale slowly using your diaphragm. This is called diaphragmatic breathing or "breathing with your belly". This inhalation should be a slow comfortable breath; do not overinflate your lungs.
3. After inhaling a breath slowly, hold it for 3 seconds. This is done to control your breathing and prepare for an effective huff cough.
4. Tilt your chin up slightly and use your stomach muscles to make a series of three rapid exhalations with the airway open, making a "ha, ha, ha" sound. This helps to open the epiglottis in your throat and better allow the expulsion of the mucus in your airways.
5. Gain control of your breathing again by taking a couple slow breaths.
6. Repeat the huff coughing technique until the mucus has reached the back of your throat.

It wasn’t enough that his patients actively cough up their sputum. He wanted a deeper, better cough, and later, in his office, Warwick made another patient practice his cough. The patient stretched his arms upward, yawned, pinched his nose, bent down as far as he could, let the pressure build up, and then, straightening, blasted everything out.

Finding An Accredited Center

2009-02-23T04:36:00.000-08:00

Finding an accredited center in the US

http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/

Checking Up on How that center is doing
http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/

Webcasts regarding care centers and more important CF topics
http://www.cff.org/LivingWithCF/Webcasts/ArchivedWebcasts/#Quality_CF_Care

Common Values in FVC Tests

2009-02-23T04:26:00.000-08:00

Shucks unfortunately this doesnt show up nearly as well in this as it does in word. I have a ton of articles and links on my computer that are helpful, I want to start organizing them so I figured I'd do it here.

Explanation of common test values in FVC Tests
Abbreviation
Name
Description

FVC
Forced Vital Capacity
This is the total amount of air that you can forcibly blow out after full inspiration, measured in liters.

FEV1
Forced Expiratory Volume in 1 Second
This is the amount of air that you can forcibly blow out in one second, measured in litres. Along with FVC it is considered one of the primary indicators of lung function.

FEV1 / FVC
This is the ratio of FEV 1 to FVC. In healthy adults this should be approximately 75 - 80%.

PEF
Peak Expiratory Flow
This is the speed of the air moving out of your lungs at the beginning of the expiration, measured in liters per second.

FEF 25-75% or 25-50%
Forced Expiratory Flow 25-75% or 25-50%
This is the average flow (or speed) of air coming out of the lung during the middle portion of the expiration (also sometimes referred to as the MMEF, for maximal mid-expiratory flow).

FIF 25-75% or 25-50%
Forced Inspiratory Flow 25%-75% or 25%-50%
This is similar to FEF 25%-75% or 25%-50% except the measurement is taken during inspiration.

FET
Forced Expiratory Time
This measures the length of the expiration in seconds.

SVC
Slow Vital capacity
-
TV
Tidal Volume
-
MVV
Maximum Voluntary Ventilation
-
Note that functional residual capacity (FRC) cannot be measured via spirometry, but it can be measured with a plethysmograph.

Results are usually given in both raw data (liters, liters per second) and percent predicted - the test result as a percent of the "predicted values" for the patients of similar characteristics (height, age, sex, and sometimes race and weight). The interpretation of the results can vary depending on the physician and the source of the predicted values. Generally speaking, results nearest to 100% predicted are the most normal, and results over 80% are often considered normal. However, review by a doctor is necessary for accurate diagnosis of any individual situation.

Reading Update

2009-02-22T05:27:00.000-08:00

Well the reading is great, so far I am adding to the list faster than I am reading LOL but the book I really want to need next is in the mail so I am waiting a couple more days before next book.

Read:
123 Magic
When Bad Things happen to Good People - Kuhner
Scientist in the Crib--Science meets how babies brains work--this just interests me
Happiest Toddler on the Block

Next Up:
Love Dare
Home Safe Home (alternatives to toxic laden household products)

On Docket in No particular Order (problem being once I get on a 'subject' I find more and more I want to read on it so my guess is the religion/marriage books will take over for a bit)

Skinny Bitch in the Kitchen (wholistic eating not what you think)
Power Spoken Word
Power Spoken Tongue
Sacred Marriage
Butekyo Breathing Shut your Mouth
The surrendered Wife
Marriage Book-Gary Neumans
"Better' - Atu Guande
Some sort History Book - (perhaps Steve Ambrose?)
Woman Power - Schlessinger
Priceless - Ramsey
Proper Care and Feeding Marriage - Schlessinger
5 Love Languages - Gray
Millionaire Next Door - Stanley
Power Praying Wife - Omartin
QBQ - Miller
Purpose Driven Life - Warren
Dare Discipline - Dobson
Raising Girls - Dobson
Guerilla Marketing - Levinson more for DH maybe I will get him it on tape or I might read it

Inflammation Banter

2009-02-21T03:34:00.000-08:00

I have had two awesome convos with others have issues similar in nature to mine, I definately want to capture these so I can go back and reflect later.

Laura Montana girl

I can soooo relate to what you are saying. I often feel the tight wheezy feeling even though my pft's are not down that bad, but it always turns into infection if i don't treat it quickly. I also culture ABPA, and my doc is in the process of getting me on xolair. Anyway... that's not really my point...... My point is that the ONLY thing that helps me when I start having the wheezy's is pred, and even though I despise the side effects (moon face, irrationality, sleeplessness, jitters, screaming at the dog for reasons he has completely no control over...ect.ect.ect) It is really the only thing that helps with the wheezing, not even my breathing tratments will do the trick. My docs, both the ones at my old clinic and the one I am seeing now prescribe prednisone when I start exhibiting these symptoms. I know that pred can mask the syptoms if you are actually getting an infection, but for me, many times a couple weeks on pred will help with the wheezing, and i will not develop an infection. However if I do nothing the wheezy's almost ALWAYS land me in the hossy with a flare. I would say on average I am usually on pred at least twice a year, but many times it is more often. I am currently taking pred, and have been doing so since dec. I haven't found anything that really helps with the side effects, except I was thinking if maybe they could ease me into the pred the side effects might be less. I've noticed that after a couple days my body kinda adjusts and I don't feel so irritable, and the tears don't flow as freely, so I'm thinking I will ask to be put on a smaller dose and ease my way up to the big dose and the ween myself back down (don't know if this will work or not, but hey it's better than insta-crazy Laura) I also try to take it as early in the am as possible, to kinda counter act the sleeplessness, but still there are times when i need an ambien when I'm on steroids. I know one of the side effects of long term steroid use is thinning of the bones, so I have to have DEXA scans yearly to check my bone density, but that's all I can think of at this moment........... Hope this helps!!! BTW does the xolair work for you? OK big DUH on my part!!! Another side effect of long term steroid use is, of course steroid induced diabetes...... don't really know how that one slipped my mind, considering prednisone is probably the leading reason I now wear an insulin pump.OK big DUH on my part!!! Another side effect of long term steroid use is, of course steroid induced diabetes...... don't really know how that one slipped my mind, considering prednisone is probably the leading reason I now wear an insulin pump.

Laura - THANK YOU! Funny my symptoms come on differently than yours but I can relate to exactly what you are saying I get back pain, followed by a pressure around lower lobes (where I have scarring on outer peripheries that would be most likely to 'touch' sac when inflammed), then intermittent pleural pains that will last a brief second and then increase in frequency and length, tiredness, then lack of sputum movement then I will get a day or so where I get really junky mucous and then a bleed. Pretty much verbatim I can follow that pattern same as PMS or any other bodily 'rhythm'. I never really wheeze but I do start getting short of breath like going up stiars whihc is not my norm and I start getting a excercise reactive cough which for a daily excerciser SUCKS! I had a lady ask me if I was contagious a bit ago. All well. On the diabetes ugh, my family is rampant with it---whomever says there is no link to carrier symptoms I call BS if they did a study on my family I am 100% positive they could prove it. Anywya I digress. So both my sisters are type 1 and I have been trending towards diabetes world since I was first tested at 12/13. Right now I am able to counter problems by eating high protein/complex carbs but we shall see and thank you for the reminder. Also, interesting that you have ABPA, did you mean you culture aspergillus? I do not culture asp but I do have ABPA and the xolair HAS been wonderful for me, I will not go without it now. You can see my blog, a side of cf for my journey with xolair. I HIGHLY recommend it especially given the symptoms you describe.

_____________________________________________________________________

Originally posted by: Nightwriter Yes, Yes, Yes, Nicole. This is my story also. You are soooo lucky that you have doctors who recognize this. You are on this site far longer than I am, so that you may have read some of my posts. This is ALL I talk about. So your theories are going to help you so much! Thank you!

I will go back and search under your name as time allows but if you have a blog or a summary it would be most appreciated. I tend to be a very educated, pro-active, aggressive patient known for getting my way LOL and I am sooo happy that i have changed clinics last year. I went in to them saying 'this is my first feb with you guys and this is what will happen' and it worked!

I wish that I had found my doctor years ago who treats the inflammation just like you are talking about. She said that it really was too bad, because I sustained so much permanent lung damage (also bronchiectasis) that could have been avoided.

I went 21 years without being diagnosed after which I diagnosed myself and still got referred to a shrink and NOONE will ever treat me like that again so if I get to where someone is not taking MY knowledge of MY body serious I am OUT OF THERE! I can totally relate and you are right I am fortunate to have gotten fed up and transferred. So this new doctor: it helped that my bronch last year was clear, clear, clear the doc said he saw less mucous than any average Joe until he got to the lowest lobes he could and then he found some but they showed me the salt water mucous cocktail it was very light in color and well pink too of course since Ihad had a bleed but I think that convinced him also he took pictures and everything looked more bright pink/red that I think it was supposed to. He was surprised though that there was not 'massive inflammation' nothign striking and reportedly less than an average CF'er but I always follow a weird pattern and never fit the mold. I am ALWAYS the square peg medically speaking. Oddly enough this weird 'inflammation issue' I had last year that made me pursue a new clinic got to the point where for whatever reason after the second round of antibiotics when I could tell I still had something infl going on I got completely non productive like I have never been in my LIFE, then bled shortly after, which after that was was when he did the bronch.

When I first went to my doctor, she came up with a plan to reduce inflammation. I remember getting a cortisone shot and a very brief course (maybe 10 days of oral steroids) to get me started. I had to also reduce the inflammation in my nose (I was 100% blocked on one side and I didn't know) by using nasal washes and nasal sprays. The dripping down is a big source. Then I had to get rid of carpet, add a quality air filter and vacuum, remove fragrances, etc. I was tested for asthma and allergies. Put on antihistimines (I saw you take Xolair).

I have recently stopped wearing perfume, gotten breathe healhty mask for cleaning, dusting, hair spray use etc, I have been on xolair and allergy shots for 2 years. I switched from zyrtec (which is drying) to allegra and have a few more sinus headaches but find mucous movement easier. I could NOT have done allegra before getting allergies under control I just got too severe headaches and after taking EVERYTHIGN zyrtec worked best. We do have two dogs which I am allergic to but once my current serum vial is out for dogs that vial will be made 10x stronger and I will work up to it so that should help too (there is new data last year showing they could increase serum level on dogs). My DH tries to keep dogs bathed regularly and we have 3 beds we wash, air outside, store and rotate to keep them manageable. We have all hard wood and tile so that really helps. I love our dogs but I have talked to him about once they are old and gone getting something a bit more allergy friendly, he hates small dogs but perhaps a labradoodle LOL but I digress. Other things I have done is slowly switched to using alot cleaners to vinegar, baking soda, and bleach--this is a work in progress. As the stuff I have now runs out I am goign to look into less scented bath body products etc as well. I also am trying to arrange for my sister to come over and do some stuff that bothers me and for DH to take over ajax duties like tub scrubbing etc when other things just arent cutting it. I dont have a huge amount sinus issues, especially given extent my allergies, I dont culture anythign and nothing is blocked but I have notbeen checked by an ENT in years so probably should get an update. I do rinses when I am sick or feel the need. Now that my allergies are under control I have little to no dripping issues but the sinus's do act up with every pressure or season change. We will be in teh house we are in right now (which isnt bad but basemeent gets damp--hubby sprays bleach when that happens and was built in 1878) for a few more years but the next house is going to be built or gutted and have some VERY specific things to make it a breathing heaven!

I went from severe hemopytsis, and constant IV's, including inhaled Tobra in addition to always feeling sick to fairly normal. In the beginning, I was still sick every few months (sometimes with bleeding, fever, bad cough) but used Tobi and was fine. The illnesses started getting farther and farther apart. I couldn't believe it. My baseline FEV1 was 37%. Within 2 years it hit the low 50's, enough to go back to work and live a "normal" life gain.

I am sorry to hear you had to get that ill to get someone to listen to you. My baseline FEV1 did increase significantly when I started being ubber compliant, excercising, treating my allergies, and using xolair. The fact that when you take a steroid, you get better proves there is inflammation at work like you said. Especially when you see IV's didn't do the trick. My doctor tells me that short term steroids are okay. I take inhaled steroids every day, and if I'm sick and not getting better, I get a low dose shot. I don't know what meds you take and if you want I will share with you what I do. In addition to taking appropropriate meds and mucus clearance, I do take a number of anti inflammatory supplements. You can do a search under my name and find them. Always check with your doctors because what I do may not be right for you.

I take: allegra (most effective non drying on market) singulair (why not treat every potential allergen avenue available) zithromax (again with teh macrolide and inflamation benefits a good idea) prevacid 2/day (recently discovered acid reflux was irritating my lungs and causing inflammation, my reflux seems to have increased from occasionally needing once a day to always needing 2x/day) advair HFA 230/21 (changed from discus with new doc and higher strength this helped, old doc thought I should wean off of advair completely since I was treating allergies and ggetting xolair WHAT ever I refused) Nasacort (most effective for me and I have tried them ALL of course in winter my sinuses bleed but doesnt seem to matter which one I take that happens) birth control (my bleeding and inflammation also appear tied to my hormone levels, long story, this is an experiment)
Xopenex (I do this or 3-4 puffs albuterol before my treatments but am going to ask to switch to xopenex inhaler too)
Pulmozyme (2 vials once a day, for someone with high FEV1's studies have showed twice daily dosing beneficial, most clinics dont rx this way I requested it at old clinic and does great by me and in no way appears tied to my bleeds, It is supposed to be one vial 2x a day but I have found the other way more effective for me not to mention time efficient)
TOBI (I do month on month off not true 28 days, thinking about changing but again I do better alot times with HTS months than TOBI months.

Any time I am not doing TOBI I do just the xopenex and pulmozyme in the morning and then HTS at night)

Supplements: 1000mg vitamin c 2x/day,
Magnesium mg? tue/thur/sat and every day on abx (this is to replace the mg antibiotics leach from your system),
Calcium 500mg 2x day (previously had osteopenia but now am +1 instead -1 so no more!)
gut flora supllement (varying kinds and dedication to taking them)
B complex (cant hurt right?)

I would like to take more supplements and am looking into what vitamin levels macro micro trace I can and want to have run to help spur this on. The reason I am not more into supplements is because I just weaned my daughter this summer and I am planning to get pregnant again this year so I am very cautious. I believe in educated experimentation on myself but not my child(ren).

So I love your theories. If you do anything in your life to remove triggers it will add to your progress. Remember, in addition to actual allegies, there are irritants and chemical sensitivities that raise the inflammation which cause exacerbations. Most of the time, after an exposure, and subsequent symptoms (increased mucus, cough, fever and/or bleeding) I can treat the inflammation with my doctor's guidance, and I can get better without antibiotics. If I can't get the mucus out (such as being restricted in coughing because of bleeding), then it can turn into infection.

THanks! I addressed the triggers and my attempts at reducing them above. Let me konw any additional suggestions that are not TOO extreme, I do like to keep a life balance in perspective as well. Well scratch that tell me everything and I will decide what I think will fit in my life budget etc. So I konw taking steroids could allow an infetion to get a strong foot hold have you found problems when goign on abx after takign steroids?

I did have an exposure which I believe kicked this months process into high gear. I had clothes for DD stored in basement in tubs with moth balls well we had brought them up and I asked him to wash them. I had never used real moth balls before. When I got home he had opened them and had them in piles to wash and the whole HOUSE smelled horrid horrid horrid it was really bad even though he was already washing them. He immediately took the others out on back porch and continued washing repeatedly the ones in teh washer but that was also a day of a torrential down pour and our basement got wet so he also overdid it on the bleach (trying to be a sweetie and keep me safe) and so the two together did me in and I got some pain that night, a tiny spot blood next morning which I thougth was from my sinuses, and then the next day was when I got streaks blood for sure from my lungs.

I'm very interested in hearing how you progress.[/Q]

I will keep you posted, thanks!

Investigating Inflammatory Issues

2009-02-20T19:24:00.001-08:00

Kk so here is as brief as possible story.

Every feb like clockwork I get same symptoms which to me feel inflammatory related not infection, dont get me wrong sometimes I get infections brewing but not nearly as often as I feel I am having inflammation issues. I get back pain, tightness, intermittent pleurisy, etc. I will go in to my old clinic and they do PFT's that come out really good, showing slight reduction generally starting in small airways. I would tell them I AM getting sick, sure as heck show back up normally to the ER (why hemoptysis only happens after hours and on weekends is beyone me)2-3 weeks later with hemoptysis.

Despite not feeling I have an infection the answer was always there must be infetion in there SOMEWHERE. Ok sometimes I buy this but not all the time. I had one time JUST finished IV's and it happened anyway and they were baffled. Another time they had just seen me, I was clear as a bell and it happened.

Last year I had this happen and after two courses IV's, 5 meds, over 3 months I was not better the pleurisy got SEVERE the bleeding re-occured and I transferred to a new clinic that specializes in adults.

After ruling out all other factors they decided, especially based on what they saw in my bronch that it had to be inflammation based (what I had been saying all along but they not knowing my history or wanting to overlook anything were being precautionary with tons blood test, MRI, CT, Xrays, cultures, bronch etc).

I did 3 weeks steroids (2 weeks @40mg) and one week taper and sure enough after appt FEV were good but not all way back, two months later after all had calmed down etc I was back to having best numbers ever 103%FEV1 and 98% small airways. The FEV I was afriad I had lost and I hadnt EVERY seen my small airways so good when in conjunction with a good FEV1 plus my FVC was up too 111 which was a record. I was thrilled.

Now fast forward to this feb, last week I feel myself following typical pattern and start getting very slight blood streaks in sputum on friday for like 2 hours. Call nurse, tell her I was exposed to something irritating on wed (moth balls ugh) and hve been feeling tight we decide to monitor over weekend. Called monday said nope its not going away and went in this thursday told them the whole sheband about my theory on inflammation vs infection. Get this THEY AGREE.

Today's report FVC 111
FEV1 100 (down 3%)
FEV25-75% 88 (down 10%)

Yes, they had noted in my chart reaction to steroids was good, they had previously eliminated all other avenues and they decided I should start on steroids for 2 weeks. I am THRILLED! I hate steroids and I of course may need IV's anyway, I may get an infection anyway, but at least htey are willing to listen and think outside the box. I am especially concerned about getting sick while on steroids considering its 'going around' badly where I live.

My doc said he has seen a couple patients who seem to have these problems that are inflammatory in nature more often then infection. I culture PA, and achromabacter and have ABPA which I treat with xolair and is in 'remission state' I also have moderate bronchiectasis.

So this is a new adventure for me to explore this avenue. I am trying to figure out a way to do the steroids without driving DH crazy or gaining 10lbs since I have been trying hard and have LOST 10lbs and was shooting for another 10lbs. I am hopeful this will work, I am hopeful I will be able to avoid my feb IV's but I am trying not to get my hopes up. Just to make sure they dont get too up my lungs decided to give me mroe blood streaks today )(&*X^&)(#WE))!!!! but I did feel well this morning, ran two miles, and then this afternoon got some good stuff up which I hadnt been able to for a few days (another sign I always get). So my hope is now that the airways are opening up I will move some stuff that was stuck and this will be accounting for the blood. Unfortunately no breathing treatments tonight.

Ok I am off to bed, glad I can release this here because even DH just doesnt understand how huge this is potentially for me. I think we need to have a talk about a number of CF related issues. He tries so hard but I am jsut not sure how best ot explain some things or tell him waht I want/need during these times.

ok off to bed for real---steroids allowing!

TRACKING
29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper

15Dec2008 FEV1 103% FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 82

4Dec2007: FVC 99 FEV1 91 FEV25-75% 77

Groundhog Day Resolutions

2009-02-06T18:57:00.000-08:00

Saw this idea on another blog and liked it, groundhog day resolutions means I will make the goals on 1/1 then check back on them on 2/2 3/3 etc. Running abit late here but...

My FYI Plan:
Up my workout routine to 5 days a week
on track, have been doing this with 50-65 weekdays and then 1.5 on weekend 1x with a missed day here or there during the week and sundays off but reserved as a 'recoup' day for slacking

Start jogging again with a goal of getting to 3 miles 2-3 days a week (with my Knees permission)
up to 2.25 but had a knee issue earlier in the week so taking a week off

Loose around ~20 pounds, more a size/look/feel issue but that's probably about max I'd want
9lbs down

Be evaluated for Tiger-2
Hubby and I decided this is not right for us right now, multiple reasons including: I am really doing well with my new HTS routine plus I feel the 3x day will be overwhelming and we are most likely trying for #2 this spring.

Do more huffing throughout the day
not started yet

start doing more HTS between now and when I can no longer (if I do tiger-2)
packed a portable neb and will start trying to do one on the way home from work, did TOBI on time tonight so up late doing HTS now while vesting

Start doing a BS monitoring 2x month or so
not started yet

FLUSH MY PORT ON SCHEDULE (I am horrible about this)
Oh my how long has it been *cringes*

Find a more efficient & compliant way to wash/sanitize my nebs
bought a pasta pat for microwave and loveeee it but need to get some bottled water so I can boil, 1/3 the way there!

Determine a new peak flow range
nope, printed the sheet, does that count?

Added:
bought some breathe right masks for cleaning, dusting, etc

bought allergen bedding and pillows!

started eliminating alot scented products from cleaning/beauty regimen

darn

2009-02-04T02:10:00.000-08:00

why is what I want to do have to be in conflict with what I think I SHOULD do?

I dont WANT to do tiger-2, I WANT to get pregnant and ahve a second child--like yesterday. But I need to be an adult and make sure DH and I are on the same page and want to make the same decision, the right decision, for the RIGHT reasons.

PROS:
I think inflammation is as big if not a bigger deal for me than infection for so many reasons
CFF needs it; I qualify, its part of my duty to my fellow cf'ers
Even 5% would in effect 'cancel out' a future bad year or two's lung loss = longer life
would be healthier when pregnant
if I have a bad health year might be best not to have another anyway
more time to accomplish some feats at work before decreasing my productivity
more time to pay off debt snowball and ensure financial security before expanding family\
more time to get in better shape

CONS:
time committment, I am alreads stretched so thin in alot ways
postponing our family planning, increasing spacing between kids
perhaps decide too late or too unhealthy to have another child
missing work juggling appointments etc

when you write it all down it looks like I should definately do TIGER-2, thing is they havent called me back so I keep thinking its a 'sign' I know I should just suck it up and call them today, maybe they hit a blip maybe they forgot I dont know.