I'm still here

I haven't blogged since June because there's been nothing new to report.  My ME symptoms have remained steady for a long time, which is good.  I continue to be one of the very lucky ones who is still able to function at a high level compared to the average ME patient.  I feel very fortunate for that. 

In my last blog I mentioned that I was trying Cromolyn for mast cell activation and I had noticed an improvement in my gut symptoms.  It was short-lived.   I stopped taking Cromolyn in early September when I realized it probably wasn't having any beneficial effect.  I haven't experienced any drop-off in health since ceasing.  I haven't found anything else to benefit my reported mast cell activation...if that's indeed what I'm dealing with.

I continue to focus on treating SIBO because it is a distinct problem that I feel gives me a reasonable chance at treating.  On the other hand, with respect to ME as a whole, I feel like I've largely exhausted what I can try.  There's nothing left.  I'm still trying to obtain insurance approval for intermuscular IGG, but the insurance company has already denied me twice, so I am not counting on success. 

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I feel fairly certain that my SIBO is caused by a dysfunctional vagus nerve, which is all tied in to ME in the first place.  My version of SIBO is the methane-producing type, which is related to irregularity.  Simply put, my guts are not moving things through the system.  When food remains in the system too long, stagnating, it leads to overgrowth of unfriendly bacteria and a class of primitive life form which is not actually a bacteria at all, but its own class called "archaea." Archaea don't respond to most antibiotics. 

There are various techniques to try to stimulate the vagus nerve and improve regularity.  I find that only doing one or two has little effect, but when I consistently do multiple vagus nerve stipulation techniques, it does start to move things along...a little.  In that vein, I take 2 mg. of Low Dose Naltrexone (LDN), which is also an immune modulator and, in theory, should help with other neuro-immune aspects of ME.  I also take cold showers and do very light yoga when I can.  These things seem to stimulate the vagus nerve. 

Meanwhile, I am going to try another round of anti-SIBO antibiotics consisting of xifaxin and neomycin.  Both together are recommended for methane-based SIBO.  I'm hoping that the results will be more long-lasting this time if I continue to focus on keeping regularity so that the conditions don't remain for the problem to return.  I am nervous though because the success rate for treating SIBO with xifaxin and neomycin is only about 40%.  Most times, it returns within a year.  If that happens, I don't have much left to try. 

I'm now treating with Cromolyn for Mast Cell Activation Syndrome

In December, one of my doctors (Dr. M) gave me a diagnosis of Mast Cell Activation Syndrome.  I wasn't entirely confident about the diagnosis, but am willing to try various recommended treatments.  Dr. M first recommended that I try successive two week trials of each of the four major brands of over-the-counter H1 blocker allergy medications.  (I don't want to write the brand names in this post, but they are well known.)  I tried all four and didn't notice a significant difference with any of them.

Dr. M had recommended that if the 1-dose per day regimen didn't work, that I should try up to 3 doses per day.  I never tried that because I'm hesitant to exceed the box's indications.  Perhaps in the future if I read about other MCAS patients having success with larger doses, I may try it, but I haven't yet sought out recommendations from other MCAS patients.  My doctor also wrote a prescription for cromolyn liquid, 100mg 4x/day, in the event that the over-the-counter options failed.

In the meantime, after being in more-or-less remission from SIBO for about 4 months in late-2018 and early-2019, the symptoms started to return in March. (My SIBO symptoms are feeling of intense inflammation and bloating throughout the gut, accompanied by constipation—I have the methane-based type of SIBO.)  As you can imagine, this was a disappointment for me. By mid-May, the symptoms were as bad as they have ever been.

When the SIBO symptoms reached a peak in late May, I decided to fill the cromolyn prescription on the chance that it helped with the SIBO symptoms.  It certainly seemed to help.  Almost immediately after I began taking the cromolyn, my gut symptoms improved.  (As I found out later, there is a connection between SIBO and MCAS, so it might make sense that cromolyn would help SIBO symptoms. For example, this link.)

My experience with SIBO has been a wild ride and the symptoms have waxed and waned at times without any explanation, so it's difficult to know with certainty if the cromolyn was the reason for the improvement.  I also still experience some SIBO symptoms, but not as bad as in May.  Also, my dose of cromolyn is half of what other patients report taking.  I may need to increase the dose to further experiment—if insurance will cover it.

In the meantime, I've started the process of seeking insurance approval for intramuscular IgG, which should help with SIBO as well as continued positive IgM for Epstein Bar Virus and other issues. The insurance company (of course) rejected the first effort for approval.  They want me to undergo a further antibody production test which would involve receiving vaccinations for diphtheria and tetanus and then subsequently testing whether my body's antibody response is sufficient.  I have many reservations about this but I am considering it.

Edit: "H2 blocker" replaced with "H1 blocker."

Dizziness and possibly vertigo as symptoms of M.E.?

I have been going along at baseline or a little above for almost a month now.  When things are going smoothly, I often forget to blog.  January was the first month since I started blogging in about 2011 that I let an entire calendar month pass without blogging.  That's a good sign.

Strangely I woke up this morning with my brain feeling inflamed.  When I opened my eyes and looked around the room, the room felt like it was spinning. I could tell that getting up was going to be an adventure.  It was.  Of course, the feeling of brain inflammation and brain fog that I've been enduring this morning is nothing new.  I've experienced it on and off since 2011.  It's strange, however, that for the first time that I can remember, it has resulted in feeling dizzy.  What has changed?  I'm not sure if "vertigo" is the right term (I will have to look into that.)

[Edit: this wasn't POTS or OI.  I've had those symptoms before. They come and go for me, thankfully. But this was worse when lying down, which is the opposite from when I've had POTS and OI.]

I haven't yet had time to research ME and dizziness. I seem to recall other patients complaining about it.  So this is the first step--just acknowledging that it's an issue.  If anyone has any insights into treatments to that help this condition, please let me know.   

Still positive for EBV (IgM)

Among all the MCAS test results I received last week, I also learned that I am still IgM positive for Epstein Bar Virus (EBV), the virus that causes mononucleosis.  (I didn't mention this in Tuesday's post about MCAS because it was beside the point of that blog post.)

In 2016 and 2017, I was repeatedly test for EBV, and each test showed that I was IgM positive for EBV.  IgM antibodies are supposed to indicate a current, active infection, as opposed to past infection.  Despite various anti-viral treatments, the results never changed.  I ultimately hit a dead end both in terms of treatment options and in my quest for answers to this puzzle.  At about that time, I started experiencing SIBO symptoms.  Frustrated with the lack of answers about EBV, I began ignoring EBV and focusing on SIBO.  

Not surprisingly, EBV may still be an problem. 

The reason Dr. M tested me again is because we're going to make another, more serious attempt at obtaining insurance approval for inter-muscular IgG therapy.  I truly believe this would be helpful to me--and I feel more hopeful about the potential benefits (if I can obtain coverage) than any other treatment I've wanted to try.   

Adding to my sense that EBV may play a central role in my ME, there's this article, written by Cort Johnson on ProHealth in November of this year, about ongoing research and new findings regarding EBV and its possible role in ME.  

I admit, over the years I've waffled on whether EBV is a contributor to my ME, but I'm back to thinking it is more likely than not. If I had to bet right now, I'd bet that EBV is more likely than any other cause to be at the root of my ME--I and believe this even more than Dr. C's theory of entero-viruses.  I believe that others of my diagnoses and symptoms, such as SIBO, hypothyroidism, MCAS, are all caused by complications of this smoldering EBV problem.  That's my best educated guess at the moment.   

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.

Negative:

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

Positive:

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. 

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.   
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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. 
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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.)

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.