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.

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.



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?

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

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?

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

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

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

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

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.

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.

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.
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.