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

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

Monday, February 8, 2016

Check Out and [Maybe] Edit ME-pedia.org

Apparently ME/CFS has it's own wiki.  I recently found out about ME-pedia.org when a friend emailed the link.  This page shows its organizers and founders.  

I'm excited about this.  ME-pedia has the potential to revolutionize how the patient community builds its knowledge base.  One of the best ways to ensure progress is for patients to share their experiences and build collective knowledge bases.  We can't simply rely on a handful of scientists to solve everything (although I'm still holding out hope for that!)  Up until now, the process of patient-to-patient knowledge sharing has mainly played out in the message boards.  I love the message boards, but they aren't the most efficient way to collectivize knowledge.

Say you want to understand a given treatment.  First you might search the Internet generally for an article or a research paper on the topic. Those are rare and can be difficult to find.  If you can't find any articles, maybe you go to the message boards where there's often dozens of threads on a given treatment.  Within each thread, there are various digressions and irrelevant information.  Nobody is verifying that statements are supported with citations.  It's all up to the reader to divine the useful information from the "noise" and decide whether that information is supported by facts or is merely opinion.

ME-pedia has the potential to make this collective knowledge sharing process much more effective and efficient.  I assume it will work like Wikipedia, where editors check to ensure that users' edits and additions are supported by citations and are generally written in an objective, encyclopedic style. If so, this could turn into an invaluable resource.  It's already shaping up that way.

I just wish ME-pedia had been around when I first received my diagnosis.

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.
_______________

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"




Thursday, February 4, 2016

Book Review: Why Can't I Get Better?, by Dr. Richard Horowitz

[Note:  This review can also be found on my Book Review Page.]


Before I get into the details of this book, I want to mention that this review is written from the perspective of an ME/CFS patient reading a book that is primarily about chronic Lyme disease. The book overall has excellent reviews on Amazon  and it actually reached the New York Times Best Sellers list, which is remarkable for a specialty health book.  Clearly, Dr. Horowitz did something right here.  

I read this book for two reasons.  I had recently received a questionable Lyme disease diagnosis, and I wanted to read a book about Lyme to see if it would help me decide whether I truly have Lyme or, if not, what else I could do to shed more light on this murky topic.  The second reason was that ME/CFS and Lyme seem to have a large amount of overlap in symptoms, test abnormalities, and treatments.  A Lyme book could be valuable reading for an ME/CFS patient.  

At times I found this book to be a bona fide page turner; I was learning new things on nearly every page. Mind you, if you've been an ME/CFS patient for any period of time, you probably won't learn anything new on a "macro level"that is, you won't discover any new concepts or treatments.  But the book offers a deeper understanding of many of these old concepts, like mitochondrial dysfunction, the HPA axis, immune dysfunction and others.  Dr. Horowitz views Lyme, ME/CFS, Fibromyalgia, autoimmune diseases, and other neuro-immune illnesses as being part of a spectrum he terms MSIDS (more on that later...), so it's relevant regardless of which neuro-immune disease one might have.

Usually when I read a health book, I'm constantly assessing how I might rate the book.  For over 400 pages, I had this book pegged as a solid 4 stars, despite its flaws.  Then on page 437 I came across this (in Chapter 19, called "Lyme and Exercise"):
"Patients with Lyme disease, fibromyalgia, and chronic fatigue syndrome (myalgic enchephalomyelitis) find their fatigue and pain syndromes improve with increased exercise, independently of other changes in their medical regimens."
Uh oh!  It gets worse. Later, he says:
"Aerobic exercise has been shown to be effective in reducing fatigue among adults with chronic autoimmune conditions, as well as those with depression, cancer, multiple sclerosis, and chronic fatigue syndrome."
Later he recommends "a graded exercise program."  In the span of two pages, the book went from a 4 to a 1 star.  I was left wondering, how could someone who purports to be an expert on, among other things, ME/CFS be unaware of all of the studies showing that exercise makes ME/CFS patients worsethat it is, in fact, dangerous?  The book has a copyright date of 2013; two years before the Institute of Medicine (IOM), in conjunction with the National Institute of Health issued its report which attempted to rename the disease SEID, or systemic exertion intolerance disease. One wonders if Dr. Horowitz took note of the IOM report when it was published and if future editions of the book might contain a revised Chapter 19.

But let's not allow the review of a 532 page book to be about 3 sentences.  Although I probably risk being ostracized from the ME/CFS community for saying this, the rest of the book does have some value.

The Good.  To build on what I said above, Horowitz does an excellent job of taking the reader on a wide ranging, comprehensive tour of the various systemic failures and corresponding treatment options for patients with chronic neuro-immune diseases.  A brief scan of the chapter headings for chapters 5 through 18 gives an idea of the breadth of this book:  Immune Dysfunction, Inflammation, Environmental Toxins, Functional Medicine and Nutritional Therapies, Mitochondrial Dysfunction, Hormones, the Brain, Sleep Disorders, Autonomic Nervous System Dysfunction/POTS, Allergies, Gastrointestinal Health, Liver Dysfunction, and Pain.

Despite having read extensively about most of these topics in the past, many of them were explained in a more clear, logical way than I'd ever previously encountered. For that reason alone, I'm glad I read the book and I'm glad I have it in my library as a reference source, despite the glaring flaw regarding the "e" word.

The Bad.  Besides the exercise disaster mentioned above:

1)  Dr. Horowitz tries to coin a new term: MSIDS, which stands for Multiple Systemic Infectious Disease Syndrome.  This is meant to be a sort of overarching spectrum upon which the various neuro-immune diseases fall.  The problem is, we don't need another acronym. This is obviously not a term that will catch on in the larger medical community.  The goal of a book like this should be to make the subject less esoteric, not more.

2)  Similar to the above, Dr. Horowitz proposes an MSIDS diagnostic algorithm amusingly called "The Horowitz Sixteen-Point Differential Diagnostic Map."  Every time he refers to it throughout the book, which is often, he repeats the full 7-word eponymous title.  I pictured the author in an infomercial, and whenever he says "...the Horowitz Sixteen-Point Differential Diagnostic Map" we hear the chime of a spoon against a crystal glass as a cartoonish gleam flashes on the doctor's smarmy grin.  A voice-over adds "TM."

Things like this make me question an author's motive.  Is he a true scientist at heart, nobly trying to expand the knowledge base and heal people in the process, or is he trying to become the next celebrity doctor, ala Dr. Oz?  I don't want to be questioning this when I'm simply here to find some answers to my health problem.  It makes me want to say:  "It's not about you, doctor. It's about the patients."

3)  Each chapter follows roughly the same format: There is an explanation of the scientific evidence regarding the topic of the chapter, be it Immune Dysfunction, Inflammation, etc., and a review of various treatment options.  This is often done quite masterfully.

Then each chapter concludes with an anecdote or case study, lasting anywhere from 2 to 6 pages. These quickly become tedious and formulaic.  A patient comes to Dr. Horowitz very sick and desperate.  Dr. H applies The Horowitz Sixteen-Point Differential Diagnostic Map* (TM) and this results in him trying one or two treatments.  The patient returns a few months later still feeling miserable.  Dr. H digs deep inside himself and has a brainstorm.  He adds another treatment.  The patient returns a few months later smiling and singing. They hug. The end.

These anecdotes add very little except unnecessary length to an already long book.  The book would have been better without them.  They also serve as the vehicle for some eye-rollingly corny jokes.

4)  Dr. Horowitz struggles with objectivity at times.  He mentions that he has treated thousands of "MSIDS" patients but we are rarely let in on the big picture. What percentage are recovering fully?  Are they staying recovered?  Instead, the aforementioned anecdotes leave the reader with the impression that Dr. H is a kind of miracle healer.  It makes one want to run out and immediately board a plane to New York to track him down.  It is, of course, acceptable to use anecdotes to make a medical book more engaging, and naturally, the successes make for the best stories.  But the author should take care to emphasize that the results in the anecdotes are not typical, and that many patients (presumably) remain ill despite using the very same treatments described in the anecdotes.

The same goes for Dr. H's coverage of controversial testing and treatment procedures. It is OK for the author to pick a side on these controversies, but he should first explain both sides and then explain why he picked his side.  For instance, in the Allergies chapter, he discusses so-called IgG allergy testing and comes out heavily in favor of it.  There is very little credible evidence that IgG allergy testing is valid, and in fact, the weight of the evidence seems to suggest it is probably not effective. At the very least, it is highly debatable.  You wouldn't know this by reading WCIGB.

Another example is Dr. H's reliance on controversial Lyme testing laboratories and other laboratories that test for metals and environmental toxins.  They are all controversial in their own way.  Dr. H should explain both sides of the controversy before choosing a side, so that patients can make their own informed decision.

Despite these flaws, I would have still rated this book fairly high if it wasn't for the melt-down in Chapter 19.  As an ME/CFS patient, I can't in good conscience give it anything other than a 1 star (★)



  

Saturday, January 30, 2016

Dr. C on the hunt again

Yesterday I had my first appointment with Dr. C in about a year.  Dr. C is an ME/CFS specialist who is fairly well known in some circles.  The main reason I visited Dr. C this time was to solicit his opinion on my recent, questionable Lyme disease diagnosis.  He did not disappoint.

Research Update

CDC Tests Samples - No Luck

First, as usual, Dr. C brought me up to date on the most recent developments in his corner of the ME/CFS research world.  Dr. C adamantly and passionately believes that ME/CFS is caused by infection by enteroviruses.  For years, Dr. C has been trying to convince the U.S. Centers for Disease Control (CDC) to search for enteroviruses in his library of stomach biopsy samples from 2007.   They recently agreed and Dr. C sent some of his samples to the CDC.  Unfortunately, the CDC was unable to detect the presence of enteroviruses in the samples.  If I understood him correctly, Dr. C seemed to think that the CDC's failure to find evidence of enteroviruses in these samples was due to their age.  He asked them to search again using a different, more sensitive technique and they declined.

RNA Sequencing of Samples

In recent years, Dr. C has also been working with a biologist from Cornell University.  He sent the Cornell researcher a portion of his stomach biopsies, some from moderate patients and others from more severely ill patients.  Rather than look for enteroviruses, the Cornell researcher took the novel approach of sequencing the RNA in the samples.  She started with the samples from moderately ill patients and apparently the patterns she found were unusual.  (The question of what exactly was unusual about the samples was apparently too complicated to explain to me, a lay person, in the context of a doctor's appointment.  I of course understand.) Dr. C is anxiously awaiting the results of the sequencing for the samples from severely ill patients.  He seemed to think this could be a breakthrough.

Vagus Nerve Research  

Dr. C also mentioned some fascinating research from a Danish group of scientists involving the Vagus nerve.  In decades past, doctors sometimes resorted to severing the Vagus nerve of patients who presented with persistent and otherwise untreatable stomach ulcers.  (Thankfully, we no longer treat ulcers this way.)  But as a result, there is a significant population with severed Vagus nerves, which offers an opportunity to study the role of the Vagus nerve in overall health.

Some patients with Parkinson's acquire the disease in sudden onset fashion, after suffering severe flu-like symptoms.  (Sound familiar?)  There is a much lower incidence of Parkinson's disease in people whose Vagus nerves have been cut.  The Danish team believes this is because Parkinson's is sometimes caused by either Enterovirus 71 or Coxsackie B - 4, which enters the body through the stomach and travels from the stomach to the brain via the Vagus nerve, bypassing the blood-brain barrier. The Danish team will publish their evidence soon.

For years, Dr. C has looked for evidence that enteroviruses migrate from the stomach to the brain via the blood.  He never quite found the evidence he was looking for.  He believes the Vagus nerve possibly makes more sense as the vehicle by which the virus travels from the stomach to the brain.

Drugs for ME/CFS

After discussing a new potential drug that could help ME/CFS patients, the details of which Dr. C said were confidential and "not to be shared,"  Dr. C said that it is just a matter of time before we have a drug designed specifically for ME/CFS.  "There will be a drug" he said.  He offered no specifics on his prediction of timing for this drug, which I conclude could mean it's anywhere from 5 to 55 years away.  The good doctor estimates that there are about 4 Million ME/CFS patients in the United States alone.  He said the numbers are often underreported because there are many patients in the "mild" or "functional" category who often aren't counted in the ME/CFS statistic, but who would be candidates for any drug.  His point was that 4 Million patients gives the drug companies plenty of financial incentive to develop an ME/CFS drug.  But I wondered, do the drug companies know there are 4 Million wallets out there begging to be plundered?  

Shortness of Breath

I mentioned to Dr. C that I'd taken a bit of a downturn since the second quarter of 2015, in no small part because shortness of breath has decided to pay me an indefinite visit. He asked if I'd seen any specialists and I mentioned my consultation with a pulmonologist, including the CT scan and echocardiogram.  Dr. C said that none of those imaging techniques will reveal the cause of shortness of breath in ME/CFS patients because they only examine large airways.  The problem in the lungs of ME/CFS patients is inflammation in the microscopic airways.  The only way to detect this type of inflammation is through biopsy.

Dr. C went on to describe one of his ME/CFS patients who was so severely stricken by lung inflammation that she was often hospitalized for three weeks out of every month, and required near constant oxygen supplementation through a tracheostomy (a surgically created hole in the neck).  One of her treating physicians had placed her on high dose prednisone, which lead to a worsening of her condition and nearly killed her.

Dr. C was part of the team that was called into the hospital to decide how to handle this patient, who was a mystery to all but Dr. C.  Because the patient's blood tests were mostly normal, some of the doctors suggested that she was simply holding her breath!  In other words, she was a faker.  Dr. C expressed some anger as he described this, even 'dropping an F bomb,' which I found both endearing and amusing.  I like this guy.

Lyme Disease?

I told Dr. C that I had recently received a positive Western Blot test for Lyme and that I was skeptical of the results.  He asked if the results were from [_______] lab.  I said yes.  He smirked and shook his head.  I said, "So you think it's bullshit?"  (Now that Dr. C had cursed with me, I felt I could express myself freely.)  He said "Yes, it's bullshit."

Dr. C said that the Western Blot test is notoriously inaccurate.  He said that he, himself, sometimes performs the Western Blot test in his lab, and that the results vary even when performed twice on the same sample.  He said there are two labs in the country where "everyone's" samples comes back positive for Lyme.  [_______] lab is one of them.  

He also explained that its doesn't make sense that my results would be positive for IgM and negative for IgG (as I too had questioned.)  Some LLMD's will claim it's because a Lyme patient's body has a deficient immune system, caused by the Lyme itself, but Dr. C said a compromised immune system still wouldn't result in +IgM/-IgG.  

Having had the vagaries of Western Blot testing explained to me by someone who actually performs the test was convincing.  When I first received the test results, I wrote that I felt there was about a 51% likelihood I actually had Lyme.  Now I would say my level of certainty (or uncertainty) has fallen to about 10%.  It is possible, however, that just as LLMD's are often accused of "seeing Lyme in everything," perhaps Dr. C sees enteroviruses in everything, to the prejudice of everything else.  

I have to think about my treatment plan a little more, but for now I'm thinking I will simply continue with Byron White Formula's A-L Complex, and do nothing further about the possibility of Lyme.  In all other respects, I will continue as if I have ME/CFS only and continue with all my other ME/CFS supplements (many of which are used by Lyme patients too).  A-L Complex is, after all, sold as a general immune booster, so it should be helpful regardless of which disease I have.  With that plan, either way, Lyme or ME/CFS, I have at least some of my bases covered.  

Inosine

Finally, we discussed that I am going to try over-the-counter inosine again as an immune modulator.  I tried it once before but stopped because I thought it might be responsible for a bout of costochondritis (a type of chest pain) which arose soon after I started inosine.  Dr. C thought it was unlikely the inosine cause the chest pain, but possible. 

Thursday, January 28, 2016

Allergy Testing Results

Lately I've been on a downswing in my health.  As a result I've gone through a period of renewed answer-seeking.  As one part of this quest for more answers, I've visited a few doctor specialists including a pulmonologist and allergist/immunologist.

Some say it's a waste of time to consult doctors who are not specialists in ME/CFS because they are generally "clueless."  I agree to some extent, although I think it's possible that, under certain circumstances, specialists can help a patient solve a small portion of the ME/CFS puzzle.  I also think it can be dangerous to always write off new symptoms as "just another manifestation of ME/CFS."  That's not an assumption you want to be wrong about.  It's better to be safe.

I had a follow up appointment with the allergist on Monday, still trying to find answers to my shortness of breath and post nasal drip. They conducted an allergy skin test in which they tested me for 50 of the most common allergens--mostly environmental allergens, but the test included a few of the most common food allergies.

Allergy Skin Tests

For those that haven't had this test, the nurse applies a grid to the patient's skin.  The grid contains a number of needles that each contain a small amount of a potential allergen.  Each needle introduces the allergen into the skin by puncturing or scratching the surface.  The test is usually performed on the forearm or back.  For me, they performed the test on the back because the forearm doesn't provide enough space for 50 punctures.

The test doesn't hurt; it simply itches slightly.  After 15 minutes the nurse comes back and looks to see where, if any, there are red marks (inflammation) on the skin.  The nurse keeps track of where each of the allergens was administered and that tells him/her what you're allergic to.

My Results

The results are given with a score of 0 to 15.  Any scores in the 7 - 11 range are considered highly indicative of an allergy.  For me, nothing scored that high.  A handful of results scored in the 2-5 range, indicating a "mild" allergy.

Mold.  I've recently had two different blood tests that, according to my doctor, revealed I am not genetically predisposed to react to mold.  This is consistent with my own experience--mold avoidance never did anything for me.  The allergy test did, however, show reactivity to two outdoor molds. According to the allergist, the results do not mean I need to check my home for these molds because they only grow outdoors.

Food.  They tested for wheat, egg, milk, and peanut allergies and I was negative for all four.  However, the next day after the test, I read in "Why Can't I Get Better?" by Dr. Richard Horowitz that scratch tests only test for IgM reactivity -- immediate, severe reactions.  According to Horowitz, one can have delayed reactions (IgG antibodies) which don't reveal until 24 - 48 hours later.  I may need to try an elimination diet to determine if I have IgG food allergies.  This is something I might explore in the near future.

Dust. I was negative for dust allergies (dust mites.)  This surprised me somewhat.  I thought that if anything could explain why I often seem to have worse SOB and PND in my car, it would be dust.

Trees and Weeds.  I only had mild allergies to 2 of the 15 trees and weeds tested.  One was a tree that only grows on the East Coast.  The other was olive trees (the leaves, not the pollen.)  I asked my doctor if this means I should avoid taking Olive Leaf Extract (OLE) as a supplement (something I was taking as of Monday, and which was an ingredient in another supplement I was taking.)  She said, "yes" but she was clearly guessing.  Subsequent Googling of that question lead to conflicting results: some said yes, some said no.  I'll probably avoid OLE to be safe.

Cats and Dogs.  I have mild allergies to both cats and dogs.  I knew about the cat allergy, but not about dogs.  Several months ago, my kids asked if we could get a dog.  Having been bitten by a dog as a child and never really being much of a fan of dogs since, I told my kids we couldn't get a dog because I was "allergic."  Apparently that wasn't a lie!

My Conclusions

The only useful information to come out of this allergy testing was ruling out IgM allergic reactions as a major contributor to my inflammation--at least for the 50 common allergens we tested.  There is some value in that.  I also learned that maybe I should avoid olive leaf extract as a supplement.  Unfortunately, I still don't have an answer as to why my SOD and PND often gets worse in my car.

Wednesday, January 27, 2016

My wild adventure with Phosphatidylcholine

One of my doctors (Dr. M) recently recommended I treat with Phosphatidylcholine (PC).  Dr. M is convinced I have Lyme disease, which I’m highly skeptical about.  But since PC is often recommended for people with ME/CFS too, I thought it was about time I try it.

What is Phosphatidylcholine

Essentially, PC is a lipid that is the primary component of the cell walls within the human body.  As a supplement, sometimes PC is combined with other “lipids” in what’s sometimes called lipid therapy.  According to Dr. M, people with Lyme and ME/CFS sustain damage to the cell walls and taking oral PC helps repair the damage.  Healthy cell walls are critical to overall health for reasons too complicated for this post.  Dr. M stated that many of her patients report feeling significantly better on PC. 

At the same time I received Dr. M’s advice, I happened to be reading Dr. Richard Horowitz’s book, “Why Can’t I Get Better,” about Lyme, ME/CFS, Fibro, and other chronic illnesses.  At times, it almost seemed as if the author praised the benefits of PC therapy on every page.  This further motivated me to try it. 

If you read the Internet’s claims about what PC can do for people with complex chronic illnesses, they seem far too good to be true.  According to various sources, it reportedly detoxifies, repairs nerve damage, boosts the methylation cycle, repairs mitochondria, clears oxidative stress, repairs intestinal damage and treats ulcerative colitis, improves memory, and many other things. 

Again, this is all “…according to sources.”  It’s often difficult to verify the trustworthiness of these authorities. 

My Past Dalliance With a Little Bit of PC

Back when I was experimenting with Dr. Yasko’s methylation protocol, one of the few supplements I felt was truly helping was a phospholipid complex which included PC along with two other lipids:  Phosphotidylserine, and Phosphotidlyethanolmine.  It was called “PS Complex” or sometimes “PS/PS/PE/.”  It was actually one of the few Yasko supplements (a “short route” supplement) that I felt truly helped me.  Unfortunately I stopped taking it during a time early in 2015 when I was in a sort of semi-remission, not realizing that I may have reached that state of near-remission because of the supplements I was taking at that time, including PS Complex.  The dose of PC in Yasko’s PS Complex is much less than the standard dose of PC.   

Hello Again, Old Friend

With all of the above in mind, I decided it was time to try PC.  Then came the shocker:  it costs about $90 per bottle! 

Granted, there are less expensive brands on the market, but the consensus of Phoenix Rising users seemed to be that there are only a few brands of PC that are of truly good quality.  The brand my doctor recommended was one of them:  I took the liquid BodyBio version. 

My doctor told me to mix the liquid PC into a smoothie or other strong-flavored drink.  I don’t have the time or patience to make a smoothie every day, so I decided to take it straight.  It tastes like motor oil, but for some strange reason I enjoyed the taste.

My complaint about most ME/CFS supplements is, if they make a difference for me, the difference is often subtle. Sometimes, I am not entirely sure if any individual supplement, alone, is helping.  Often I continue to take a supplement anyway because (a) many other ME/CFS patients report that the supplement is beneficial, (b) the science says it should be beneficial based on my symptoms, and (c) my doctor recommends it. 

PC was not in this category. 

Beginning the next day, I began to experience very strong signs of a Herxheimer reaction and possibly over-methylation: Brain fog, muscle twitching, achy kidneys (nephritis), and stronger-than-normal inflammation.  Still I persisted with the PC for another five days, hoping (stupidly) that I could push through the Herx. 

On day six I stopped taking the PC, and the brain fog went away almost immediately.  However, the nephritis and muscle twitching still continue as of today, four days after halting the PC experiment.  Those two symptoms seem to be improving slightly with each day but still I’m astonished at how powerful the PC was.  My assumption is that the PC set into motion a detox event that my body is still struggling to clear. 

After experiencing such a strong reaction to PC, I started looking deeper into what other patients were reporting about PC on various forums.  (I probably should have done this before taking PC).   Based on forum posts, my rough estimation is that about two-thirds of the patients who’ve reported on their reaction to PC state they had strong negative reactions, many of them consistent with what I experienced.  But those who report positive effects seem very insistent that PC is a key to improvement

There’s one important thing I haven’t mentioned yet:  on day 3 of the PC experiment, among all of the negative reactions, I had a day of extremely clear headedness, almost bordering on a euphoric feeling.  Despite the nephritis, my energy was unusually high that day.  In fact, I had so much energy and mental clarity that I was awake most of the night as the energy burst continued.  Also, I've barely had any shortness of breath or post nasal drip since my first dose of PC.  Strange...

Going Forward


Based on all of the above, I believe there’s great potential in the therapeutic value of PC if I can hone in on the correct dose, correct titration, and perhaps the correct combination with other supplements for my body chemistry.  Maybe the solution is to go back to the more mellow “PS Complex” that I had success with in 2014 and 2015.  Of course, my natural inclination is to see how far I can take the benefits of PC, so I may experiment more with the pure PC liquid.  After all, I have a $90 bottle gathering dust.

Friday, January 22, 2016

This guy nailed the Th1/Th2 dominance question...

I've never come across his blog before (because it's not specific to ME/CFS), but a blogger named Joseph Cohen of SelfHacked did a pretty darned masterful job of explaining the differences between Th1 dominance and Th2 dominance, and the different strategies that that can be used to counteract each.

When you think about it, it can be absolutely critical to identify which dominance you have because your whole treatment plan could potentially be counter-productive if you assume incorrectly.  I have always assumed I am Th2 dominant because (a) my understanding is that most ME/CFS patients are, and (2) Dr. C told me so.

As I started reading the article, I actually recognized aspects of myself in both profiles, Th1 and Th2. For instance, I do have arguably low T3 thyroid hormone despite otherwise normal thyroid tests.   But in the end, I decided I'm still pretty sure I'm still Th2 dominant.  The clincher is that low IgG subclass 3 is a hallmark of Th2 dominance, as is low Natural Killer Cell function.  That's me, exactly.

In any event, if you want to increase your understanding of this tricky concept, here's a great read: http://selfhacked.com/2014/06/16/supplements-foods-exercise-right-type-th1-vs-th2-dominance/