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

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

Wednesday, December 12, 2018

Doctor says I have Mast Cell Activation Syndrome

On of my doctors (Dr. M) has been encouraging me lately to get tested for Mast Cell Activation Syndrome (MCAS).  MCAS has been, of course, discussed heavily in ME circles in recent years.  Last year I read Dr. Lawrence B. Afrin's book on the subject, Never Bet Against Occam, which is considered by some to be the best book on the topic.  My only conclusion from reading the book was that the entire field of MCAS seemed too nascent and undeveloped (especially at the time of the writing of Dr. Afrin's book in 2016) and that we (ME patients) would need to wait for further research for anything useful to come out of this new topic of research.  For one, the list of ailments that Dr. Afrin attributed to MCAS at the end of his book might as well be the entire Physician's Desk Reference—it seemed (and still seems) unlikely that nearly every ailment ever acknowledged in western medicine (a little bit of hyperbole here) would have MCAS as its root cause.

Nevertheless, Dr. M has been studying this new field and she believed it was worth testing. She sent me to the lab for MCAS testing, which includes a 24-hour urine test and blood testing.  The test apparently can't be performed by an ordinary corporate lab, so I had to make a special appointment at my local hospital's lab. Even then, the hospital had to call my doctor's office twice to confirm the procedure, and I had to return the next day to begin the testing.

I received the results last week and they were positive.  Dr. M seemed thrilled because, she said, of the "dozen or so" patients she has sent for MCAS testing, I was the first to receive a positive result.  I felt less thrilled than Dr. M because, based on my limited understanding, the medical profession doesn't know exactly how to treat MCAS other than by trial an error with many, many kinds of histamine blockers and other mast cell inhibitors.  A positive test is like knowing you have an allergy to something, but not knowing what the trigger (allergen) is or how to treat it. (This is just an analogy, I'm not saying MCAS is an allergy.)

Here are the results, starting first with the negative results then moving to the positive.


Tryptase Level                    Normals: <11.5 ng/ML     Mine: 2.4
Chromogranin A                 Normals: <93    ng/ML     Mine: 62
Basophils %                        Normals: 0-12   %            Mine: 6.3
Histamine Plasma               Normals: 0-1.0 ng/ML      Mine: 0.96
2,3 Dinor 11B
   Prostraglandin F2A  Normals: <5205 pg/mg    Mine: 2617
2,3 Dinor 11B
   Prostraglandin F2A  (ur)   Normals: <5205 pg/mg    Mine: 2478
N-Methylhistamine, Urine   Normals: 30-200 mcg/g    Mine: 125
N-Methylhistamine, Urine   Normals: 30-200 mcg/g    Mine: 122


Leukotrine E4 (urine)        Normals:  <=104 pg/mg    Mine:  158
Leukotrine E4 (urine)        Normals:  <=104 pg/mg    Mine:  221
Postaglandin D2                Normals:  35-115 pg/mL    Mine:  193

Unknown - No Reference Range Established:

Postaglandin D2 (urine)                                               Mine:  98

To me, this raises more questions than it answers.  First, I note that all three of the urine test samples were tested twice.  I'm not certain why, but the results were fairly consistent between tests, so I won't worry about it.

More importantly, how significant are these results really?  Would other knowledgeable MCAS doctors say I clearly have MCAS, or are the results equivocal?  The Leukotrine results provide the following notation:
"Leukotrine E(4) (LTE4) >104 is consistent with the diagnosis of systemic mast cell disease, in adults.  The clinical sensitivity of LTE4 is 48% in patients with systemic mastocystosis.  When LTE4 concentrations are combine with other biochemical markers of mast cell activation, N-methyl histamine (NMH) and 2,3-dinor 11-Beta Prostaglandin F(2) Alpha (2,3BPG), the clinical sensitivity increases to 92%. Results should be interpreted  in the context of the patient's clinical condition."
I don't speak laboratory-jargon, but this seems to indicate that the a positive Leukotrine test, by itself, is not very reliable.  I'm not sure what the positive Postaglandin D2 test adds to this analysis.  The results of that test include the disclaimer:
"This test was performed using a kit that as not been cleared or approved by the FDA and is designated as research only.  The analytic performance characteristics of thes test have been determine by [name of lab].  This test is not intended for diagnosis or patient management decisions without confirmation by other medically established means."   
I didn't necessarily feel this way when I started writing this post, but my confidence level in this new diagnosis is shaky at best.  I have to do my own research before I decide whether and how to act on this diagnosis.  I know many of you are far more knowledgeable about MCAS that me.  I'd love to hear your impressions of and reactions to this post. 

Monday, October 22, 2018

Another Dr. C Appointment

I had another appointment with my ME specialist doctor today, who I refer to in this blog as Dr. C.  I'm going to have to keep this update brief with, essentially, bullet points only:

Dr. C states that a colleague in Belgium has developed a drug specifically to treat enteroviruses, which Dr. C said would be the big breakthrough that ME patients have been waiting for.  (This of course assumes that ME is caused by enteroviruses, which Dr. C is 100% certain of)  The drug is now in development by a European drug company, but it is supposed to take 2 years from now to finally hit the market. 

The animal testing for this drug had very good results.  It eliminated all traces of enteroviruses in the bodies of mice. Dr. C asked the inventor if it also eliminated enteroviruses in the brains of the mice and he did not receive an answer.  This is a concern.   

On a personal note, Dr. C stated that the pain under my left rib, he believes, is pleurodynia caused by the coxsackie B virus.   Pleurodynia is basically just a sharp pain in the chest, usually caused by coxsackie B.  We discussed the fact that a few years ago my coxsackie B test results showed very high titres for the B5 strain of coxsackie, and they have been dropping slowly ever since.  This is a common pattern for coxsackie B, to have the titres slowly drop back down over the coarse of about 5 years. 

I also confessed to Dr. C that I've been taking mints that have caffeine and B vitamins for a daily boost, and that I have generally felt better since starting to take them (no surprise there), but I asked if he would be concerned these mints would lead to a major collapse or crash.  He said that as long as I didn't have any side effects like heart palpitations, he was OK with me using the mints in moderate amounts (consistent with typical coffee consumption of caffeine.)

Monday, August 27, 2018

On an upswing. Speculating about the reasons.

My health has been above-baseline almost all summer.  For that matter, if we don't count the SIBO symptoms and neurological symptoms (most likely, small fiber neuropathy)—a big "if"—I seem to have been on an  upswing since about December or January.  Starting in or about June, the neuropathy and SIBO improved, leading to even greater upswing.  Just as the downswings (the crashes) are sometimes difficult to explain, so too are the upswings.

Perhaps I hit upon the right combination of supplements for me by sheer luck.  I'm frequently adjusting my medication and supplements at the recommendation of doctors and based on new and changing symptoms.  Right now my med./supp. routine is

  • 4 Equilibrants per day on weekdays only (pause on weekends for "pulsing" the dose), plus;
  • T3 and T4 for hypothyroidism;
  • Digestive enzymes with every meal (for SIBO); 
  • Allimax (a garlic extract) with every meal (for SIBO); and 
  • Dihydroquercetin (recommeded by Dr. C) as needed for lactic acid buildup and/or histamine.  

I eliminated a couple supplements at around the time the neurological symptoms improved, including my multivitamin which contained significant amounts of B12 methylcobalamin.  I may have been over-methylating on the multivitamin.  The other supplement I eliminated at that time was phosphatidyl choline (PC).  I still can't tell if PC helps or hurts—I get mixed results.

I have been occasionally taking caffeine mints (the caffeine never hits the stomach, so it is gentler on the GI tract), which also contain B12 in the form of cyanocobalamin.  Based on my genetic profile, cyanocobalamin may be the better form of B12 for me.  It does not cause me to over-methylate. (I realize the practice of taking caffeine in any form by a PWME is considered risky by some.  I'm taking it cautiously.)

Also, summers are  usually better for me, perhaps because there are fewer colds, flues and illnesses floating around and perhaps because moderate amounts of natural Vitamin D from the sun seems to serve me well.  But recent summers have not been as good as this one.

The strong shortness of breath (SOB) that was plaguing me in recent years also seems to have abated.  I suspect it has something to do with the change in my diet required by SIBO.  Something in my previous diet may have been triggering histamine and allergic-like reactions which seemed to lead to SOB and sniffles.  I still occasionally experience the SOB, but nothing like before.  I think I know now what foods to avoid, particularly grapefruit, avocado, cashews, coffee, dark chocolate and large amounts of kale.  At the same time, now when I do try small amounts of those problematic foods, the reaction is nothing like before.  Something else seems to have helped abate the SOB and post-nasal drip.  When I do seem to have an overflow of histamine, dihyrdoquercetin helps.  I previously reported that dihydroquercetin did not help, but I don't think I was paying close enough attention at the time.  It's a subtle difference, but I do believe it is real.     

Unfortunately, this improvement may have a potential dark side.  Throughout this period of increased functionality, the tenderness and swelling in the lymph nodes in my neck seems to have worsened and become more constant.  I don't know what this means and I plan to discuss it with my doctor soon, but it tends to temper my enthusiasm about the upswing. 

Wednesday, July 11, 2018

G.I. doctor appointment

I've been writing about SIBO here on this blog since late 2017.  I think I'm now gaining better clarity:  I'm at the point where I've seen enough improvement that I could probably live with my symptoms as they are currently. The symptoms have improved enough that I seem to be symptom-free about 4 or 5 days per week, with mild to moderate symptoms the other 2-3 days per week.  (This assumes the symptoms don't get worse again, which is a big assumption.)  There's no doubt, this is a decrease in quality of life from my pre-SIBO state, but it's better than late-2017, early 2018. 

How did I get here?  I took two 1-month courses of Xifaxan and Neomycin, which improved symptoms but did not eliminate them.  After that treatment, I took a regimen of herbal SIBO treatments recommended by my doctor (Dr. M), but I eventually stopped because those treatments seemed to be causing more GI distress, not less.  I have been taking digestive enzymes and an Allimax (a garlic extract) tablet with each meal since about January. That, combined with sticking to an anti-FODMAPS diet, and not snacking between meals (waiting at least 4 hours between meals), seems to have returned some of my quality of life to me.  I also use LDN for motility, and a soil-based probiotic.  If I stray from the anti-FODMAPS diet, I can usually tell immediately.  The connection is very clear.

Anti-FODMAPS diets allows most vegetables, about half of all fruits and nuts, and nearly all meats, oils, and fats. 

I went back to the GI specialist yesterday (Dr. L) and reported everything above and asked if there was anything else to test to make sure we aren't missing anything -- any other explanation (that could hopefully be treated more easily.)  He said he was very confident that we haven't missed anything.  He stated that if my symptoms worsened again, I could come back again in a few months and ask for one of three additional options:

1.  CT Scan (I'm NOT doing this)
2.  Scope of the stomach, intestines and colon.  He said this is a significant procedure because the doctors need to send the scope in through both ends, under sedation.
3.  SSRIs.  Dr. L said that for unknown reasons, people who have inflammed and sensitive bowels, show improvement on SSRI drugs (a class of anti-depressants.)  Dr. L stated that a side effect of SSRI drugs is that they calm the nerves in the gut.  When these nerves are overactive, people experience pain and discomfort in the gut, and SSRIs calm them.  (I'm not too keen on this idea either.)

The plan for now is to wait a few months and determine if I can simply manage my symptoms with diet, enzymes, Allimax, LDN, and probiotics.  It seems to be a livable solution at this time.  If symptoms worsen again, I'll go back to Dr. L for #2 above, and consider (but not likely try) #3. 

Monday, July 9, 2018

A discussion of anti-retroviral drugs in the treatment of ME

There's an interesting thread on Phoenix Rising about the use of anti-retroviral (ARV) drugs in the treatment of ME.  Many people, including my doctor, Dr. C, believe that ME is caused by retroviruses. (Dr. C specifically focuses on enteroviruses, which are a type of retrovirus).  The entire thread is worth reading, but if you are short on time, here are a few highlights:

[First, I must give the caveat that the original post in the thread consisted largely of a Google translation of a blog post by a German doctor.  The translation is not perfect and it is not always possible to discern the meaning, but this is my best attempt.]

  • A German doctor/ME specialist, Katerina Voss, who has successfully treated patients, including her own daughter, using a the ARV drug tenofovir (brand names: Viread and Truvada) (a Hepatitis B and HIV drug) .
  • Dr. John Chia has succesfully treated some patients with the ARV drug lamivudine (brand name Epivir) (developed for Hepatitis B and HIV). 
  • Voss states that a potential side effect of ARV treatment is impaired mitochondrial function, which is already a problem for ME patients in the first place.  To combat this, she recommends supplementing with "N-acetylcysteine (NAC, caution in histamine intolerance !), Glutathione or niacinamide (Vitamin B3 flush-free)."
  • One poster states he/she anecdotally knows of about 30 patients who have improved using ARV treatments. 
  •  Other posters report success with herbal ARV scutellaria baicalensis, also known as Baikal skullcap or Chinese skullcap.  There is no information on dosing.
  • ARVs might lead to improvement not because of their anti-retroviral properties, but because they can also be immune modulators. This is always a possibility.
The full thread can be found here...

In 2012-2013, I wrote about my experience trying Epivir under Dr. C's care.  Here are excerpts from the two pertinent posts:

Before trying Epivir:


Epivir is an antiviral that was originally used to treat HIV patients.  HIV patients often initially experienced significant improvement with Epivir, but the virus would then adapt to the Epivir after a year and the drug would lose it's effectiveness.  For this reason, it was later used in combination with other antivirals to have a more long-lasting benefit.  Dr. C believes it can have a more long-lasting benefit for PWME's as well, even without combining it with another drug.

Dr. C states that Epivir is a fairly safe and non-toxic drug, with few significant side effects being reported.  The side effect known to Dr. C, lactic acidosis, is theoretical - Dr. C has never seen a patient who actually experienced it.  

Dr. C's studies have shown that Epivir can be effective when combined with Equilibrant for some patients, and when combined with Inosine for others.  It works in about 30% of the patients for whom he has prescribed it.  When it does it work, it seems to work quite well.  

Dr. C related several anecdotes in which patients had very good success with Epivir, including a story of one patient who was apparently brought back to nearly normal functioning by a combination of Epivir and another unspecified antiviral (Valcyte?)  Dr. C cautioned however, that Epivir is not something that normally cures other words, if a patient improves and then stops taking the drug, the virus will come back just as strong as before.

And after attempted treatment with Epivir:


Next we discussed how I tried Epivir but was forced to quit after only 3 days due to a major flare in my shortness of breath, which landed me in the Emergency Room.  Dr. C stated that he and his team have recently discovered that some antivirals actually increase the replication of certain viruses while suppressing others. Since I haven't had a stomach biopsy and we don't know what specific enterovirus I (may) have, we're doing guesswork at this point. He said that the shortness of breath could also have been a die-off reaction, or it could have been the stimulation of viruses in my lungs.  He said it's not worth testing either theory and I agreed. 

To illustrate the point about antiviral medications having different effects depending on the virus, Dr. C mentioned that patients for whom echovirus 6 and/or 7 is a major contributing factor to their ME/CFS don't respond to Epivir.  Epivir is simply ineffective against echovirus 6 and 7, but very effective against other viruses. 

Thursday, June 28, 2018

Just passed my 7th sick-iversary

I'm usually aware of my sick-iversary (June 5) as it approaches and then I blog about it on the day it happens.  I like to use the anniversary date to reflect on the "big picture"-- to discuss where am I in my treatment plan and what I think are reasonable goals.  This year I completely forgot about it until yesterday.  I suppose that says something about how I'm now accustomed to being sick all the time.

I no longer hold out any hope that I will somehow spontaneously get better.  That doesn't even seem like a glimmer of a possibility.  I've also now tried just about every major treatment that ME patients use for ME (at least among those that are affordable to me and that I've deemed worth the risk), and none of them have led to great improvements, although some may have helped pause or slow the decline.  So the conclusion is:  If I'm going to improve significantly, it will take a medical breakthrough.  For that reason, I find myself visiting the ME message boards less frequently because I don't think it takes daily monitoring to know about a major breakthrough.  If there is ever a big exciting discovery, it will be impossible to miss.  There will be articles popping up on Facebook and other ME new sources which will spread throughout the community virally.  So now I wait.... 

Friday, May 18, 2018

Working on a whole host of problems


I'm almost out of options to treat methane-based SIBO (one of the many so-called "co-morbid conditions" that often comes with ME and its compromised immune function) and it still persists.  I first felt symptoms in August, 2017.  In January, 2018, I suspected I had SIBO and changed my diet to anti-FODMAPS.  There was an improvement.  The diagnosis was later confirmed with a breath test.  

In February-March, I took my first one-month course of antibiotics for SIBO (Xifaxan and Neomycin). There was another improvement after the first week of antibiotics.  After that, the improvements stopped.  A second month-long course of the same antibiotics in April saw no further improvements.  Meanwhile I'm sticking with the anti-FODMAPS diet.  Between courses of antibiotics, I was taking Biocidin and Olivrex (as recommended by my doctor.)  Throughout this time period (since about February), I have also been taking digestive enzymes and Allimax before each meal -- all as recommended by my doctor (Dr. M) and "conventional" SIBO treatment wisdom. 

After the second course of antibiotics, when I was still symptomatic, I re-read a SIBO treatment book to make sure I wasn't missing anything.  The book mentioned that it can be important to fast between meals if one has methane-based SIBO (and thus, likely, constipation.)  I didn't really think I had constipation, but I tried fasting between meals anyway.  Here's an explanation of why fasting between meals is important.  Normally, I am a constant snacker. For two weeks after starting the fasting, I was symptom free.  I thought I had finally solved the riddle.

Alas, the symptoms have been back since Monday (it's Friday now.)  My doctor now says that I should switch herbal SIBO protocols, going from Biocidin/Olivrex, to a combination of Dysbiocide, ADP, Berberine, and FC Cidal.  (To be fair, this latter herbal protocol is by far more common in SIBO circles; I had tried to get away with the former protocol because it was cheaper and easier to take.)  So I switched yesterday.  If this doesn't work I either have to accept and live with SIBO symptoms, or explore other possible causes of my bloating and pain despite a clear positive SIBO test. 

One other measure I will try is to keep a chart of each meal I eat and whether I have SIBO symptoms afterwards.  My SIBO symptoms, when they arise, tend to set in within minutes of a meal.  It is very rapid.  SIBO specialists say that, depending on the particular gut bacteria one is dealing with, each patient's case and recommended diet will be different from the next.  For that reason, SIBO diet plans are sometimes only starting places--they must be customized for each patient.  This sounds like an incredible hassle, but I feel like I'm backed into a corner with the failure of other treatments.    


Prostatitis is back.  As I've written over the years, prostatitis has been an on-again-off-again problem for me since falling ill with ME in 2011.  I've been free of prostatitis for about two years and I was hoping perhaps I had defeated the problem.  Not so. 

The main symptom this time is a near-constant burning in the urethra, which my urologist (Dr. B) said told me is "referred pain" from the prostate.  The doctor prescribed 4-5 weeks (!) of Doxycycline.  

During my past bouts with prostatitis, the antibiotics were either of limited or no help whatsoever.  I eventually came to the conclusion that my prostatitis was either viral or fungal based (e.g. here, and here).  Even though I filled the prescription, I wasn't planning to take it. 

The pain was significantly worse this morning, so I took an over-the-counter home UTI test.  It was positive for leukocytes.  I took my first dose of the Doxycycline this morning with a sense of frustrated resignation.  I want to limit my antibiotics intake, but I also don't want to let an infection grow out of control.  I don't seem to have much of a choice.    

Peripheral Neuropathy 

A sense of pain in my finger tips and big toe tips is another symptom that plagues me from time to time.  This is likely peripheral neuropathy (PN) according to my doctors.  Sometimes it comes with other symptoms, like hyper-sensitive skin.  This time, it has also been accompanied by a strange numbness and slight twitching in my calves.  It actually feels like everything below my knees is less connected to the rest of my body - less responsive.  

I recently went on low dose Naltrexone (LDN), an immune modulator that is used to treat both methane-based SIBO and also many types of neuro-immune conditions like ME.  I'm taking only a 1.5 mg dose.  I am wondering if these new PN symptoms are related to the LDN since the symptoms arose around the same time I started taking LDN.  I may have to quit LDN for a week to see if the symptoms go away.