Candida Tongue and ME/CFS

When I was diagnosed with ME/CFS in 2011, one of the first things the doctor told me was that the white film on my tongue was called "Candida" and that it was a sign of a weakened immune system.  Ever since that day, I've tried to determine if that doctor was correct.  Is the white film really a sort of barometer for how the immune system is functioning?  Here's what I've learned.

My Past History with "Candida Tongue"

I became ill with ME/CFS in the Summer of 2011, but I know I've had a white film on my tongue since at least 15 years earlier.  When I was in college, a girlfriend once mentioned the white film on my tongue and told me it was a sign I needed to brush my tongue harder.  I looked in the mirror, and it was the first time I ever recall noticing the whiteness.  If it had noticed before, I assumed it was normal.  The film was mostly confined to the back half of my tongue, exactly as it is today.  

My girlfriend's tongue was, by contrast, perfectly pinkish-red.  Not a hint of white film could be seen.  For the next few months, I brushed my tongue after every teeth washing.  It never made any difference.  I came to the conclusion that I could brush my tongue until it bled and it still wouldn't remove that film.  My girlfriend was clearly wrong about the brushing.  She simply had a pinker tongue I decided.

_______________

In 2005 (6 years before ME/CFS), I experienced a year of unexplained health problems.  Although I didn't know it at the time, it was a bit of a preview of ME/CFS.  I contracted Epstein Bar Virus (I have positive IgM blood tests from that time), I had kidney aches, and serious GI distress among other things.  All would return in 2011, along with many more.  

The GI distress eventually led me to a gastroenterologist who "scoped" my stomach via endoscopy. He found no ulcers, but he did find "candida plaques."  According to my medical records from that time (which I retrieved later after my CFS diagnosis), the doctor prescribed me 2 weeks of Diflucan.

It is said that everyone, including healthy people, has Candida yeast growing inside them, so my assumption is that what the gastroenterologist saw was more than the usual amount.  Although the "scope" report doesn't actually say Candida "overgrowth," it's doubtful the gastroenterologist would have prescribed Diflucan if he'd seen merely a normal amount.     

                                                                   _______________

These incidents from my pre-ME/CFS past suggested two possibilities:  Either (1) the white film on my tongue is not unusual and not indicative of weak immune system, or (2) I've had a weak immune system since well before ME/CFS.  In this latter scenario, perhaps a weak immune system made me pre-disposed to ME/CFS; in effect, I was perhaps a "ticking time bomb" waiting for my viral and/or toxin load to reach a critical mass.  

So which one is it?

Test Results

When I eventually received my CFS diagnosis, one of the first blood panels showed that my candida antibodies were very high.  Using a reference range of <1.0, my results were:

IgG  1.3

IgA  3.7

IgM 1.4

They were all high, but the IgA results particularly were off the proverbial charts.  Subsequent courses of oral Nystatin brought the numbers down slightly, but IgA never fell below 2.4.  (I didn't tolerate Diflucan well this time--it made my kidneys ache.)

On the other hand, dozens of non-CFS doctors and dentists have looked in my mouth over the years and none have said anything about an excess amount of Candida.  That tells me, if the Candida levels in my mouth are excessive, it is not shockingly obvious.  

                                                             My Amateur "Investigations"

After the blood test results, I began to wonder about Candida overgrowth and, for a period of time in my first year with ME/CFS, I naively thought that treating it might be a key to recovery. (How little I knew.)  I read The Yeast Syndrome, by John Trowbridge and Morton Walker.  I changed my diet, first to an anti-Candida diet for about 90 days, and then to a Paleo diet for "maintenance."  

All the while, the white film on my tongue remained mostly unchanged, although for brief periods of time while on Nystatin, the film was slightly reduced.  Even when I wasn't taking Nystatin, every once in a while the film would nearly disappear for a day or two, for no apparent reason, only to return.  It's truly bizarre how it can come and go, and yet, when it's there, it feels so utterly permanent--incapable of being brushed away.  How can that be explained?  

Then, as the years passed, I began occasionally asking friends and family to show me their tongues..."for science!"  They all had some degree of white film, although none quite as thick as mine.  (I never again saw a perfectly clear tongue like that of the old college girlfriend, and so I realized that either (1) she must have had an abnormally strong immune system, or (2) she was a space alien.)  

So I knew that measuring the strength of someone's immune system wasn't as simple as looking inside someone's mouth to see if they had a white film.  Nearly everyone has it to some extent.  Yet I also knew that the white film had at least some correlation to the health of one's immune system.  How?  Search Google Images for "oral thrush" (a severe form of candida overgrowth in the mouths of people with very severe immune deficiencies, such as those with HIV or certain cancer treatments.) But for godssakes, don't look if you are squeamish or eating.  (Click here if brave or crazy)

Now that we know what a severely immune deficient person's tongue looks like, it's logical to conclude that lesser degrees of immune deficiency would result in a lesser degrees of white film on the tongue.  But where is the line between a healthy amount of Candida on the tongue and Candida overgrowth?  Excluding cases of severe oral thrush, can one determine how healthy someone is by looking in their mouth?  Could ME/CFS patients possibly use it as a barometer to track the effectiveness of treatments?  Having compared my tongue to the tongue of healthy friends and family, I believe the answer is this:

My Conclusions

There's no criteria to determine when a normal amount of Candida on the tongue crosses over into Candida "overgrowth."  As far as I know, it's a judgment call by doctors.  They just "know it when they see it," and probably 10 different doctors would have 10 different opinions.

But I've noticed that while a healthy person's tongue often has some degree of white film, it is spotty and thin, covering 10 to 60% of the back half of the tongue.  When most of the back half of the tongue and even some of the front half of the tongue are covered with white film, the person may be immune deficient.  Obviously I'm not a doctor, but that's what I've observed.  

Where Did It Go?  

Now get this: In the last three weeks when I look in the mirror, the white film has been gone.  No trace of it.  My tongue looks as pink and clean as that old college girlfriend's.  Cleaner than those of my friends and family.  It is utterly confounding.  As far as I know, this is the first time since at least 1998 that I've had a consistently Candida-free tongue.  Nothing, not even Nystatin or Diflucan has been able to achieve this before.

I wish I could pinpoint exactly what made the Candida go away, but I'm not one of those people who possesses the discipline to implement only one treatment at a time.  About  4 to 6 weeks ago, I began adding a number of supplements to my routine in rapid succession.  Since most of the supplements I added were repetitions of past treatments, I can narrow the likely cause to supplements that are new.  

The new supplements I added are Oregano Oil (181 mg./day), Monolaurin /Lauricidin (only 3 to 8 pellets per day), and then there was a one week experiment with Phosphatidylcholine.  I also stopped taking D-Ribose, which is a type of sugar and may or may not feed Candida (this is debated).  I've also picked up the habit of just eating a spoonful of extra virgin coconut oil occasionally.  Coconut oil  is an anti fungal.  

My guess is that it is was a combination of the Oregano Oil, Monolaurin and Coconut Oil, both of which have anti-yeast properties. 

It's still too early to tell if this glorious Candida-free state will last, or if it will help in my overall battle with ME/CFS.  So far I don't feel any different.  But damn it feels good to look in the mirror and see a clear tongue.  To quote Jason Mraz in his song I'm Yours:

"I've been spending way too long checking my tongue in the mirror

And bending over backwards just to try to see it clearer"

About that Probiotics Cure....

There's an article being shared around the ME/CFS blogosphere about a patient who essentially cured herself by deciding, after some research, to put herself on a regimen of high dose probiotics (about 300 billion CFUs per day.)  It's pretty exciting if her results can be replicated.  Even if one other person can replicate these results in themselves, I will be fairly ecstatic.  Although, my excitement is tempered by the thought: someone must have tried this before, right?  If we've never heard about anyone else being cured this way, maybe it's because it hasn't worked for others.

This article came to my attention at an interesting time for me because, two weeks ago, I decided to start ramping up my intake of probiotics for two reasons:  (1) I continue to see a steady flow of new articles and research about the importance of gut flora to overall health, even from mainstream media (i.e. non-ME/CFS media), and (2) I read the blog of another ME/CFS patient who has had success taming candida with about 60 billion CFU's per day.

In the past, I had always found that I had trouble taking more than about 10 billion CFU's per day.  I would feel inflamed and slightly flu-ish.  But this time, using different brands and strains of probiotics that I selected more carefully, I have not had any trouble titrating up to 40 billion CFU's per day.  So far there's been no dramatic improvement, but I'm hopeful.  I don't think I will go as high as 300 billion like the author of the article, but I'm taking it day by day at this point.

New Blood Test Results: A Mixed Bag

I had my latest appointment with my other ME/CFS doctor yesterday, Dr. W.  My appointments with Dr. W tend to be fairly routine at this point: we check my blood test results, re-fill prescriptions as needed and sometimes tweak my supplements and Rx dosages.  The most interesting aspect is receiving my blood test results and following the progress of treatments with actual data.

This time, we tested some key immune markers that hadn't been tested in nearly two years, namely immunoglobulin (IgG) subclasses, and (a more indirect indication of immune health) candida antibodies.

As I've written about before, over the last two years I have gradually increased my "baseline" health.  The improvements have been moderate, but certainly noticeable.  It's definitely something more than just "getting used to it," although that is a factor too.  The improvements have been nothing world-beating, but then again, I would consider it a victory even if I managed to hold steady and not slide backwards.  I read about so many of my fellow patients who describe a long, slow slide backwards into poorer and poorer health, and I think that any patient who can at least maintain their baseline should be relatively happy.  A slight improvement, like mine, is something to be celebrated.

At the same time, I've been looking for some indication in my blood test results to explain why I've been feeling a little better lately.  I continue to be disappointed.

IgG Subclasses

I first had my IgG subclasses tested back in April, 2012--over two years ago.  While subclasses 1, 2 and 4 were in the normal ranges, subclass 3 was low (12, with a reference range of 22-178 mg/dL). Now two years later I had it tested again, after years of immune modulating supplements, probiotics, optimal Vitamin D3 levels, and a number of other treatments designed to boost or modulate my immune system, like Equilibrant, ImmunoStim, and others.  My new results: 12 again.

Dr. W states that my three other IgG subclasses are also low, although technically not out of range.  In each case, the numbers are in the lower third of the reference range, but this is nothing that would strike me as alarming.  Those numbers also remained about the same from 2 years ago.

Candida Antibodies

My Candida antibodies have actually gone back up (that's bad) after going down for a while...  While candida isn't a direct measure of immune health, candida overgrowth is a solid indicator of a weak immune system.  Candida overgrowth simply doesn't occur in people with healthy immune systems.

I used to test my Candida antibodies much more frequently, but my doctor stopped once it became clear that I had a good anti-Candida diet in place and I was also taking daily oral Nystanin for a while.  Here are my results from late 2011 and early 2012, alongside my recent results in bold.  The test measures three types of antibodies for a complete picture (IgG, IgA, and IgM).  Anything 1.0 or over is considered "out of range" on the high side:

              Dec. '11     Feb. '12    Apr. '12  May, '14

IgG         1.3            1.2            1.2         1.7

IgA          3.7            3.3            2.6         3.1

IgM         1.4            1.3            1.2         1.0

I supposed I could view these results either positively or negatively. On the one hand, I had been taking Nystatin at the time of the middle two tests (Feb and Apr. 2012).  Now, I haven't taken Nystatin for over a year and yet two of the three antibody types (IgA and IgM) are lower than the average of the prior three tests. Could this mean that all my diet and immune modulating work has helped?

On the other hand, IgG antibodies for Candida are higher than they've ever been, including when I was in my acute phase.  IgG and IgM antibodies, I believe, are found in the blood. You don't want to see those numbers go up because that could mean candida is becoming systemic. Candida overgrowth in the gut is one thing, but real problems begin when it becomes systemic and enters the blood stream in significant amounts.  It is not overly encouraging that IgM antibodies continue to drop, as those antibodies are usually most present in an early infection and one would expect them to wane as a long-term infection continues.  (Source).

I will be trying a month-long course of Diflucan to try to stop the Candida.  Unlike Nystatin, Diflucan can actually clear candida from the blood, not just the digestive tract. The downside is that it is harsh on the liver and must be used sparingly and under close medical supervision.

These results are just a little frustrating because I have been pretty damned disciplined about my diet and taking probiotics.  I would have expected better results.  There's not much else I can do (Diflucan is not a permanent solution), and feeling like you don't have any control over a bad situation is the worst feeling of all.  (I know, "welcome to ME/CFS," right?)

                                                                      Other Results

While not exactly related to immune function, I was shocked that my glucose tested high at 102 (range 65-99).  I was fasting on the morning of the test, and I have been a saint about sticking to my Paleo diet.  Genetically I tend to have high blood sugar, but again, I don't know what else I can do to control this.  I know there are blood sugar lowering medicines, but I don't want to add another pharmaceutical. 

Blood ammonia levels were also high 50 umol/L (normal range < or = 47).  High ammonia levels is a problem according to Dr. Yasko and her methylation protocol.  Now I have to take a couple steps back in that protocol as well. 

My Thoughts

It's not that I haven't seen any progress in these or previous blood test results.  Results like vitamin D3, thyroid, and testosterone levels have been brought back to close-to-optimal levels.  And perhaps this explains my slight improvement.  But honestly, I won't be happy unless/until I see improvement in my immune system.  Like many, I believe that immune dysfunction is at the heart of ME/CFS.  

While I know better, sometimes I had allowed myself to imagine that these slight improvements meant I would slowly climb out of this hole and get better and not have to worry about if I'll be able to play with my daughters and go on vacations and continue to work, etc.  

As Dr. W says, once you have Candida overgrowth, it is a life-long battle.  "It's a nasty, lifelong companion" he always says.  The same may be true for my ME/CFS in general.  In the best circumstances, you can manage it and hopefully stave off a backward slide and maybe even improve some, but I'm not sure that actually correcting one's immune system to the point of being "cured" is in the cards.  

How do we reconcile that with those occasional articles that claim a certain percentage of ME/CFS patients "recover?"  (Example)  I think the answer is that the surveys that produce those results have different ideas of what it means to "recover" than I do.  Probably many of them would already consider me "recovered" because I am more functional than average ME/CFS patient.  I can do things.  

But I certainly don't consider myself recovered, or even close to it.  So that's the rub: a realistic goal for me is to seek to be as healthy as I possibly can, but not to have expectations of ever being able to be carefree about my health again.  The daily frustrations and unpredictability of this disease will always be there in one sense or another.  The threat of a major relapse will perpetually be my shadow.  My task is to carve out as happy of a life as I can within those parameters.  

The "realities" that I'm writing about here are not new to me.  I've known them for a long time and have probably written about them before in this blog.  But I find that I sometimes need to reset my expectations.  My blog is called Quixotic because I have a tendency to stay optimistic even in the face of information that tells me I shouldn't be.  That's fine, but my challenge is to keep that spirit while at the same time understanding the situation accurately on an intellectual level.  With ME/CFS, and many other diseases no doubt, there's so often a conflict between the spirit and the intellect.  True peace of mind comes when we find a way to balance the two.

Blood tests show gradual improvement

On Tuesday, I had yet another doctor's appointment.  This appointment was with my "old" ME/CFS specialist, Dr. W, who I still intend to see every once in a while.  (He provides certain treatments like Immuno Stim and T3 that my new doctor, Dr. C, does not.  And as I've read many times and firmly believe, the key to remission is "getting all the pieces of the puzzle into place at once.")  Based on my latest lab results, I may be headed in the right direction.

Candida

I realize, of course, that Candida is more a symptom of a weakened immune system than a cause of ME/CFS itself.  But, since December, I've had the pleasure of watching my Candida antibody levels gradually drop.  Not as fast as I'd like, but the trend is encouraging.  Here's the progression of all 3 antibody types, from December to April (where "positive" is anything over 1.0):

              Dec.     Feb.    Apr.  

IgG         1.3       1.2      1.2

IgA         3.7       3.3      2.6  

IgM        1.4       1.3       1.2

The drop from December to February was, I believe, mostly from a change to a low carbohydrate  diet.  The drop from February to April was aided by two months of Nystatin, which I will be continuing for at least another two months.  The real test will come when I quit the Nystatin.  But I think that as long as I stick with the low carb diet and probiotics, these numbers should continue to fall.

Epstein Bar Virus

Unfortunately, I've only ever had Epstein Bar Virus (EBV) tested twice, and using two different assays, so the results are not directly comparable.  But the recent results are encouraging.  In July, 2011, my IgG antibody levels were 2.71 (where >1.10 is positive) on a VCA test, and >5.00 (where  >1.10 is positive) on an EBNA test.

In April, I had EBV tested again, using an IFA test.  The IgG antibody level was 1:160 (where  >1:10 is positive).  That number is way below what most people consider to be the threshold for a reactivated infection.  I've read anywhere from 1:640 to 1:1280 as the threshold.  

So based on this evidence, I'm less convinced that EBV is a significant factor in my ME/CFS.  

Bilirubin

High bilirubin isn't typically considered a component of ME/CFS, but it is the hallmark of a genetic condition called Gilbert's syndrome, which many sufferers claim has the same symptoms as ME/CFS.  I have Gilbert's syndrome.  

Bilirubin levels above 1.2 mg/dL are considered high. Throughout my entire life, whenever my blood was tested, my bilirubin levels were in the 1.5 to 1.6 range.  In a March blood test, it was only 1.2, and in April, only 1.1.  I'm normal!  I believe this is due to the milk thistle supplement I now take 3 times a day for liver health.   

Vitamin D3

My vitamin D3 levels also improved from 40 ng/mL in December (very low), to an ideal 73 in February.  This coincided with the major reduction in shortness of breath.  It is also supposed to improve immune function.

Other Pathogens

With other pathogens, I haven't been as lucky.  HHV-6 was tested for the first time in December and was 1:320 (IgG), which is considered right at the threshold of a reactivated infection.  In April, it was exactly the same (1:320), and this was after two months of the antiviral Famciclovir, 500mg 2x/day.  I will continue to take the Famciclovir for another two months at least, if not much longer.

In April, I was tested for Coxsackie B for the first time, and tested positive for Coxsackie B4.  I haven't even begun to explore treatment options for this with Dr. C yet.  

My Mycoplasma Pnuemoniae numbers also remain very high, although that's not surprising because I haven't done anything to treat it yet.   In April, the IgG levels were 1:512 (where greater than 1:64 is positive).  Dr. W wants to treat it with two fulls months of the broad spectrum antibiotic: Cipro.  This is heavy-duty antibiotic and many people report strong side effects, so I am leery of this suggestion.  I've filled the Rx, but haven't begun taking the pills yet.  I plan to do a little more research before diving into two months of Cipro. 

Finally, Dr. C tested the four subclasses of IgG antibodies generally (i.e. not looking at antibodies for specific pathogens).  Three of the four subclasses were normal, but subclass 3 was a paltry 12, where normal is 22-178 mg/dL.  Dr. C says this "may be my Achilles heal."  We'll see if the Equillibrant can change that.

So I've had some good new and some bad news lately, but the overall trend is positive.  I'll report on the Equillibrant later this week....

Take care,

Patrick

New Round of Labs: Low Natural Killer Cell Activity

Low Natural Killer Cell Activity

I had my third appointment with Dr. W (ME specialist) today, and confirmed what we both already suspected: my natural killer cell (NKC) activity is low.  What surprised me was exactly how low.  Out of a reference range of 8-171, mine tested 8.

We all know that the medical community hasn't agreed on a set of biomarkers for ME/CFS, but most would probably agree that low NKC activity is one of, if not the, most common marker.  Most of us have it.

So I have mixed feelings about my particular result.  It was somewhat vindicating to confirm what I already knew--that I truly have ME/CFS.  But it's also scary to see such a clear deficiency in an critical bodily function.  Not only do NKCs keep viruses at bay, they help defeat cancerous cells--often killing cancerous growths without us ever knowing about it.  Now, apparently, I'm more susceptible to cancer.

But you can't live life in fear.  For as long as this NKC problem persists, I will simply make sure that I get regular cancer screenings.  That's all I can really do.

Starting an Anti-Viral Drug

At my last appointment, Dr. W and I discussed the possibility of using an anti-viral medication to control the reactivated Epstein-Barr and HHV-6 infections.  He mentioned that he normally prescribes either Valtrex or Acyclovir.  I spent the intervening months researching these two options.  As part of that research, I came to the conclusion that a third option, Famvir, was probably superior to these others.  While all three are effective against EBV, Famvir is supposed to have a broader spectrum and be more effective against HHV-6 and other herpes-family viruses.  Since my insurance covers all three medications, I came into today's appointment intent on coming away with a Famvir prescription.  

Dr. W was reluctant to prescribe Famvir, to say the least.  So this was the first time I gave him major push-back on one of his recommendations.  He ultimately agreed, but admitted that he had no idea what dose he should prescribe.  After the appointment, Dr. W researched dosage information and wrote the prescription for 500 mg/2x day. 

I also mentioned that many PWMEs report having success with a combination of an anti-viral and an immune modulator.  This seemed to perk up Dr. W, as if he'd been waiting to suggest it himself.  He wrote a prescription for low doses of something called "Naltrexone."  I've never heard of this drug, so I'll certainly spend a couple of weeks researching it before filling the prescription.

Candida Dies Hard

The biggest surprise was that my Candida titers had hardly dropped at all.  They are still alarmingly high.  This was after 2 weeks of Diflucan (I couldn't finish the full 4 weeks due to kidney pain), months of coconut oil,  months of Pau d'Arco tea, and an absolutely unwavering commitment to a strict Candida diet.  What do I have to do to kill these buggers?  

Since I apparently don't tolerate Diflucan very well, Dr. W prescribed the next best thing: Nystatin.  Nystatin is actually much less toxic than Diflucan and can be taken for longer periods of time, so I am hopeful it will be effective this time.  

The Good News

The good news was that some of my vitamin and hormone deficiencies have been corrected...at least partially.  My vitamin D3 levels are now optimal, and my thyroid levels are closer to optimal.  I rarely get cold hands and feet any longer, so I know that the thyroid supplementation must be working.

What Are the Best Probiotics?

*This is the next is a series of posts summarizing my research of common ME/CFS supplements and trying to determine the consensus best dosage, and best brands.  Keep in mind, I have no medical background or training, so the goal is just to sort out conflicting internet information and find a common nexus.

People take probiotics for a wide variety of reasons.  There are 2 or 3 reasons for PWMEs to take probiotics.  First, probiotics boost the immune system as a whole.  The gut is the immune systems' first line of defense, and probiotics promote a healthy gastrointestinal tract.  Second, since many PWME's have compromised immune systems, they also have candida overgrowth.  The proliferation of "good bacteria" in probiotics tends to crowd out the candida yeast.  Finally, probiotics help treat IBS and other GI tract problems that are common to PWMEs.  

What Is the Best Brand of Probiotics for PWME's?

Apparently, different strains of probiotics are effective for different symptoms.  Some are better for immunity, and others are better for IBS, etc.  I wasn't interested in trying to determine the best brand for each symptom.  Rather, I wanted to determine which brand was recommended most often for general treatment of a wide variety of symptoms--especially since PWME's usually don't just have one symptom.  For more specific information on buying probiotics, see this article.  

My method was to review as many probiotics rating sites and message boards to learn which brands were recommended the most often.  Is it possible that some of the rating sites are actually paid advertisements?  Yes, but I tried to use common sense to detect and avoid obvious paid ratings.  For instance, one brand was rated #1 on one website, and not mentioned in any other ratings.  On the other hand, if a brand consistently rated in the top 5-10 on most lists, but not always #1, I gave that brand more credit.  When you think about it, who would pay to have their product ranked #7 on a list of 10?  Also, at least one rating site is operated by a non-profit organization, so I gave that website more credence.  

One of the brands that I saw ranked consistently high was Ultimate Flora.  For example, it ranked 1st here, 2nd here (the non-profit rating), and 3rd here.  A few people in the Amazon reviews section said it gave them unpleasant side effects, but the same is true of just about any product reviewed on Amazon.  Two other brands that I frequently saw rated highly were Jarro Dophilus, and Nutraelle.   

[1/16/13 edit:  Ultimate Flora offers many different formulations, but I've learned to stay away from their "Critical Care - 50 Billion" formula, or anything with more than about 15 Billion cultures.  I crash from these extra-strong probiotics, and get major shortness of breath.  Others I've talked to said the same thing.  The right amount seems to be anywhere from 5 to 15 Billion.]

Interestingly, the three best selling brands on Amazon aren't necessarily the most highly rated.  The best selling brands, according to this article are: Align, Acidophilus Pearls, and Threelac. (5/12/12 update: A friend of mine strongly recommends Threelac, and says that some of his PWME friends also call it their favorite.)

Do Probiotics Need a Protective Coating?

Acidophilus Pearls are marketed as having a protective "pearl" coating that ensures the bacteria inside survive your harsh stomach acids long enough to get to where they're needed: your intestines.  But is this necessary, or merely a marketing strategy?  Honestly, I couldn't find the answer to this question.  None of the ratings sites that I reviewed mentioned this feature, but ME/CFS specialist Dr. Teitelbaum seems to lend credence to this claim.  Then again, many PWMEs are skeptical of Dr. Teitelbaum's recommendations.  So, if anyone has more information on this issue, please let me know in the comments section and I will update this post.

The Nuclear Option

I mentioned above that I was also going to review message boards for recommendations on probiotics.  Unfortunately, I didn't find much of a consensus on this topic.  Recommendations were all over the place, with one exception.  This thread from Phoenix Rising includes several endorsements for a super probiotic called VSL3.  It contains about 500 billion living bacteria per dose, which is about 10 to 50 times the typical dose of other brands.  It is also extremely expensive, at $86 per packet of 30.  

[4/25/12 update:  My negative experience with VSL3 is written about here.]

My Choice

Speaking for myself, I do think that probiotics are an important part of my treatment, especially with my high candida antibodies.  My doctor agrees.  I decided to try Ultimate Flora, but at the same time, I can't completely dismiss the "protective coating" claim made by Acidophilus Pearls.  Since most brands' dosage recommendation is 1-3 tablets per day, I decided to hedge my bets and take two different brands.  So I'm taking the pearls in the morning and Ultimate Flora at night.  I will, of course, update this if/when I can tell if it's working.  

[8/23/12 update:  I've been reading more and more about the importance of rotating brands of probiotcs, i.e., taking one type until the bottle runs out, then switching brands, and so forth.  The theory is that the natural state of the gut has many different species of good bacteria living in balance.  Since every brand of probiotics has different combinations of bacteria, if you stick to just one brand, you could get an unbalanced gut that is dominated by the few species of bacteria that happen to be in your chosen brand of probiotics.  Again, I don't know if this theory is true, but it makes logical sense to me.]  

[2/28/13 update:  Dr. Amy Yasko recommends rotating probiotics daily.  She recommends having 3-7 brands on hand and taking a different one every day.]

Out with the Diflucan

I decided to pull the plug on the Diflucan experiment today - or at least temporarily suspend it. I'm two weeks into a four week course and the pain in my kidney area is increasing a little every day. I not certain it's related to the Diflucan, but I can't  risk damaging a vital organ. There are other, natural ways to treat Candida.  I'll keep up with the diet and add coconut oil and Pau d'arco tea.

Disappointed.

Candida Diet

I started a Candida diet yesterday, and I am enjoying the thought that, with each passing day, I am killing more yeast.  Since I was already adhering to a low carb diet, the transition was smooth.  After all, the Candida diet is a low carb diet, with a handful of additional restrictions.  As it turns out, before starting the Candida diet, I was continuing to eat a few foods that were probably feeding the yeast.  The worst culprit was vinegar--which is ubiquitous in condiments and salad dressings (including the creamy kinds, like Ranch) and anything pickled.  Others included peanuts, seeds, and mushrooms, all of which can carry various types of mold that encourage the yeast.

There are dozens of Candida diets on the internet, and the basics of each are essentially the same.  Most are phased, gradually introducing new foods as you begin to win the battle against your yeast.  (Most are also vague about when you should transition from one phase to another!)  But there are also some significant differences.  A few recommend starting with...I'm not kidding here...a coffee enema.  Others insist that the first stage must begin with a liver cleanse.  For me, I'll start with the plan recommended in the book The Yeast Syndrome, by Trowbridge & Walker (which seems to be the Candida bible).  The Yeast Syndrome plan combines prescription drug treatment (check), with diet (check), and "holistic approach"....  I'll admit I need to do some further reading on the holistic aspect, but I hope it doesn't involve ordering Starbucks in an enema bag!

Focusing on Candida...for now

Lately, I've been growing more and more convinced that Candida is a key to my specific ME etiology--that if I can get a handle on the Candida overgrowth, the other issues might start falling like dominoes.  That's the hope anyway.

At my December 6th appointment with Dr. W, he said that I had Candida overgrowth because he could see the telltale white film on my tongue, and because "most people with ME have it on some level."  I was skeptical, but agreed to start taking probiotics supplements.  (Probiotics are helpful, anti-inflamatory bacteria that help to restore the correct balance of microbiological life in your intestines, and combat the bad yeasts and bacteria, like Candida.  Also found in yogurt.)

To my surprise, when I returned to Dr. W this month, blood tests revealed that my Candida antibody levels (all three types IgM, IgG, and IgA) were "off the charts."  It seemed I needed to take Candida more seriously.  So I placed it at the top of my list of concerns, and we started me on 1 month of prescription Difulcan to battle the Candida.

This week, I've been focusing on my concern that, for over a month, my urine has been foamy.  Beginning on December 7th, I noticed that a layer of bubbles would form in the toilet bowl when the urine hit.  This layer would often grow to cover the entire surface area of the toilet water, and would not dissipate until I flushed the toilet.  My initial internet research indicated that this is caused by excess protein in the urine, which means that the kidneys are being inundated with undigested protein.  This, according to the internet, could cause kidney problems over time.  My natural assumption was that this was brought on by my switch to a low carb diet.  But, as usual, the top hits on any internet search aren't always the best answer...just the easy answer.

As I thought about it more, I wondered why the foam didn't come on gradually as one would expect for someone who gradually switched to a low carb diet.  It simply appeared one day, out of the blue...or, er, yellow.  Then I remembered that the foam appeared the day after I started taking pro-biotics.  So I searched the words "Probiotics and urine foam."  What I found surprised me.

I retrieved a dozen or so threads from Candida web forums, started by people who'd experienced foamy urine immediately after taking probiotics.  The general consensus from responders, some with medical backgrounds, was that the foam indicates Candida die-off.  It is a sign of the dead yeast being expelled through the kidneys.

As I review these Candida forums forums, I realized two things, one good and one bad:

The Good:  The foam in my urine is probably a good thing - a sign that the probiotics (and now the Diflucan) are working.  Just in case, I'm going to visit a Nephrologist next week anyway, to check kidney function.

The Bad:  Candida, it seems, is an absolute monster.  Killing it is not as simple as taking a single course of Diflucan.  For many people, it seems be something that they have to actively control of the the rest of their lives, through diet and supplements.  The Candida forums are bursting with hundreds of treatment suggestions, from special teas to liver flushes to drinking apple cider vinegar!  It's overwhelming.

As so often happens with ME/CFS patients, I've opened a door to a new topic, and I'll have to begin exploring all of the research and treatments behind that door.  This means ordering more books, exploring more forums, and generally trying to filter out all of the noise and narrow in on a few long-term treatments/diets that seem to be the consensus best.

Stomach Medication = Candida Overgrowth

In my 12/20 post, I discussed my theory that years of acid reducing stomach medications may have contributed to my ME.  It turns out I was right.

Yesterday I visited my ME/CFS specialist (Dr. W) to discuss the results of a recent blood panel.  Of the several infections contributing to my ME, the worst, in terms of antibody titers, was Candida Albicans.  Candida is yeast that often grows out of control in the stomachs and intestines of people with ME.

After the appointment, I hit the internet to learn more about the causes and treatments for Candida overgrowth.   One of the top Google links was this page, about the risk of "proton pump inhibitors" (acid reducing stomach medications) leading to Candida.  Of particular interest was the following:

"...A significant lack of stomach acid may also result in proliferation of Candida and other yeast fungus organisms...

Treatments to Avoid
....Of the two varieties of stomach acid suppressors, proton pump inhibitors are the most potent. It takes only one of these pills to reduce your stomach acid secretion by 90 to 95% for the better part of a day....Before considering an antacid, I urge you to look up the possible adverse side effects of these and other drugs, because many of them can be quite serious." 

I wish I'd known this a few years earlier.

It's hard not to feel as though my medical care providers failed me, especially the doctor who continued to renew the prescription for 5 years, and the pharmacy for doing the same.  It's an example of why you have to be your own gatekeeper and not rely completely on your doctor's advice.