Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Sunday, February 7, 2016

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.
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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"




8 comments:

  1. Hi Patrick,
    I have followed your blog for a few years. I realize this idea may just be another 'wild goose chase' but thought I would put it out there for you to consider. I have been to Dr. C, diagnosed by gut biopsy with high levels of enteroviral infection, and diagnosed with CFS. One of the treatments Dr. C recommended for me was IVIG. In pursuing this, I had to take a vaccine challenge test (pnuemococcal). I had zero response to this based on pre and post titers. I was finally diagnosed with CVID (common variable immunodeficiency)which is a sub-class of primary immune deficiencies. I now do IVIG every three weeks and my life has completely changed. I went from barely being able to make it to the bathroom to having a normal life. My energy levels are often better than 'normal' people. The symptoms of CVID and CFS tend to overlap. Extreme fatigue is one of the hallmarks of CVID.

    I noticed in your posts that you have low IGG 1 and 3 levels, which is what I had (and have without the IVIG). I don't think Dr. C is wrong, but I do think I likely had CVID for many years and was therefore predisposed to infections (including chronic enterovirus). The average time to diagnosis is 20 years for CVID as doctors are not well educated in terms of diagnosing it and recognizing it.

    Again, I am not saying this is the case for you, but thought I would mention it. The best specialist to see would be an immunologist. Maybe something to rule out in any case. Dr. C seemed certain I wouldn't have this but it turned out to (likely) be the root of my issues.

    If you would like more information or to communicate, let me know in a reply to this post and I would be happy to give you my contact info.

    Good luck and take care.

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    Replies
    1. Hi, thank you so much for adding this suggestion. I know several patients who have been greatly improved by IVIG. All such patients however tested low for multiple subclasses of IGG. For me, I only test low in 1 subclass - subclass 3. I believe one needs to test low in at least 2 subclasses in order to qualify for insurance coverage for IVIG.

      Having said that, I've had a couple family members suggest to me that I try IVIG once and simply pay for it out of pocket. If it worked really well, at least I would know I had that option when/if I really needed it.

      Again, thank you so much for your insight. It is very much appreciated.

      Best

      Delete
    2. Hi Patrick,

      I haven't heard of specifically needing two sub-classes to be low (though that may be the case). If someone's overall IgG pool is low and they also don't respond to specific vaccines as per pre/post titers, my understanding is that they would qualify for insurance coverage for IVIG. I am not sure if your overall IgG is low or not. I know someone who was barely low (around 700 with 800 considered 'normal') but had minimal vaccine response and received insurance coverage. Again, not trying to convince you (as, who knows with each individual), but you may be surprised what would be covered if you didn't respond significantly to the vaccine. The testing aspect is also relatively inexpensive. One significant aspect is finding an immunologist who will fight the insurance company for you. A documented history of infections is also helpful.

      In terms of a one time trial, in my experience, they would (hopefully!) want to titrate your dose over a few infusions to make sure you didn't have a significantly negative response, so you may not really know what it would do for you. The other common experience is that the first few infusions can be pretty rough, so may not be a good indicator. It took me about 6 months of infusions every 3 weeks to really start feeling better. 6 months to a year is common.

      Again, good luck! I hope you find what works for you.

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    3. That is very valuable insight. You makes some excellent points I hadn't considered about the one time trial.

      I believe my overall IgG levels are within range, which is the problem. I'm fairly sure that insurance will not cover the infusions if I am only low in one category and not low in overall IgG. But I am interested in the vaccine testing. Thank you for mentioning that.

      Delete
  2. Hi Patrick

    Are you sure you have oral candidiasis rather than geographic tongue?

    You can differentiate between oral candidiasis and geographic tongue quite easily by visual appearance. If you perform a Google image search on "oral candidiasis", and another image search on "geographic tongue", you can see a clear difference. With geographic tongue, there are often (but not always) patches and borders that look a bit like a geographic map (hence the name geographic tongue).

    Some studies have shown a link between geographic tongue and psoriasis.

    There is also a third type of tongue coating condition called oral hairy leukoplakia, in which a white patch is typically found on the side on the tongue. This is caused by Epstein-Barr virus, but only in immunocompromised patients such HIV patients.

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    Replies
    1. Hi Hip, thanks for the info. I have seen some things online about geographic tongue (such a funny name) and came to the conclusion that's not what I have. My tongue doesn't seem to match the pictures I see online. Nor the leukoplakia. Thank you for mentioning these two conditions - i hope others can benefit from knowing about these too.

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    2. By the way, a good way of getting a lot of pictures of these condition is using Google images:

      ORAL CANDIDIASIS: https://www.google.com/search?tbm=isch&q=oral+candidiasis

      GEOGRAPHIC TONGUE: https://www.google.com/search?tbm=isch&q=geographic=tongue

      Usually with oral candidiasis the Candida will spread to other parts of the mouth, such as the gums, inside cheeks and roof of the mouth.

      Delete
  3. 3 Researches PROVE Why Coconut Oil Kills Waist Fat.

    This means that you literally get rid of fat by consuming Coconut Fat (also coconut milk, coconut cream and coconut oil).

    These 3 studies from big medical journals are sure to turn the conventional nutrition world upside down!

    ReplyDelete