Sunday, October 17, 2010

Sensitivities...or lack thereof

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

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

Friday, April 23, 2010

Candida Dr. Discussion

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

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 years.

Thursday, April 22, 2010

Compliance Comparison

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

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

Saturday, April 3, 2010

Candida Cleansing Symptoms? (TMI WARNING)

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!

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.

Tuesday, March 30, 2010

My Take on Candida in CF Community

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.

Saturday, March 20, 2010

Consultation Recommendations

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.


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.

Wednesday, March 17, 2010

Candida Tongue?

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.

Tuesday, March 16, 2010

Candida - Upswing Day

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.

Monday, March 15, 2010

Candida - What are the Symptoms?

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
sore throat
chronic pain
athlete's foot/jock itch/yeast infection/thrush/vaginitis
cognitive impairment/hyperactivity
cravings for alcohol/carbs/sweets
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

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*.

Saturday, March 13, 2010

Candida - Die Off or Herxheimer reaction

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!!!


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:

Candida Treatment - Wholistic Way

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.

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!

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:
or this website:
or from this book:

Friday, March 12, 2010

Candida Plan & Research

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

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

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.

Monday, March 8, 2010

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

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.

Wednesday, March 3, 2010

Diagnostic Tests for Candida

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.

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.

Monday, February 22, 2010

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

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.

Thursday, February 18, 2010

Candida-spit test-lab test-doctor opinion

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:

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

Bondage Breaker & Study Guide
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

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-

Wednesday, February 17, 2010

Gene action could be key to diabetes prevention, cure

Gene action could be key to diabetes prevention, cure

By Liz Jones Comment

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:

Epigenetics: We are what our mother's eat?

Full story:

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.

Friday, February 12, 2010


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:

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.


•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

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!

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!

Sunday, February 7, 2010

Are you taking a shower with MAC & Others?

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:.

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.

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.

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.


Wednesday, February 3, 2010

I think dairy is out

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.

Sunday, January 31, 2010

Microlife Peak Flow Meter

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

Saturday, January 30, 2010

Hmmm Headhunting Cyber style?

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.


Consult with Dr. Moss

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!

Thursday, January 28, 2010

Plugging Along

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!

Wednesday, January 27, 2010


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.


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.


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

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.

Tuesday, January 26, 2010

NAC Mucomyst Acetylcysteine

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.

Saturday, January 23, 2010

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

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.

Sunday, January 10, 2010

Day 1

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.

Saturday, January 9, 2010

NAC & a near death adventure!

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!

Friday, January 1, 2010

Rocking in '10

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.