Back From 7-Year Remission

I am back after an absence of about seven years. My last blog post was in 2019. Sometime after that I went into remission from ME and MCAS. I slid into remission so gradually that I never realized when it happened. One day, I simply noted to myself that I hadn’t blogged in many months, and then those months became years. At some point, I started referring to my health condition as something that I "used to have" -- past tense.

All of that ended on about July 6, 2026, when I came down again with some sort of viral illness. I don't know how or what virus I had, but I had body aches, low fever, and sweats for about a week. 

What did remission look like for me?

What it wasn’t: During the seven years of remission, I still continued to see my integrated medicine doctor, Dr. M, about every 5 to 6 months. For one, I continued to have hypothyroidism(which was never an issue for me before I came down with ME in 2011). I needed to visit Dr. Dr. M so that I could refill my thyroid medications and monitor thyroid levels at a minimum.

Additionally, I had periodic symptoms (once or twice a month), lasting 3-4 days each time, where I would feel inflammation in my urinary tract and nasal passageways and airways. These symptoms would always present at the same time, indicating that there was a connection between them, even though they are/were in different parts of my body. I also continued to visit my IM doctor to try to work on this remaining issue(s). 

Despite being in remission, there were some things that I could never do again, like drink alcohol. If I tried, I would receive reminders that ME and MCAS symptoms were always waiting for me, so I rarely tried. I was fine with that. 

What it was: However, despite the issues that remain with me during remission, I had arrived at a point where I rarely had to take ME or MCAS into consideration when making plans. I was able to do virtually everything that a normal, healthy person of my age would be able to do. I went on international trips to places in Europe, Central America, and Mexico. In January 2024, I made it my goal to surf at least 1,000 waves that year. By the end of the year I had surfed over 1,500. I was surfing 3 to 4 days per week, often early in the morning before work. Then I was able to work a full day afterwards. 

From 2024 to 2026, I decided to make sure that I did a physical workout every day, even if it was brief (which it usually was). For example, while watching TV in the evening with my family, I would do three sets of 15 push-ups, and perhaps some yoga. The next day I would lift weights and do situps. None of this caused me to "crash." The term "crash" fell out of my vocabulary. I never had to worry about overexerting myself. Eventually my SIBO symptoms disappeared too.

My current status

For the past month, since about July 6, I have had periods of 3 to 4 days where I felt relatively well, i.e. 80 to 90% of my baseline. On these good days, I would often feel (or hope) like this relapse was perhaps a false relapse, and that my symptoms were again going into remission. 

But now I have suffered 5 to 6 setbacks, where are my symptoms return for about 3 to 4 days each time. And they never fully go away in between these setbacks. When my symptoms do return, it becomes very difficult and at times impossible to work my job or do normal household chores.

Given that the cycle of relative normalcy and crashes has lasted for over a month, I now need to admit that I have probably relapsed.  

What are my symptoms of a crash now?

1.  A burning sensation in my urinary tract and nasal passageways. 

2.  Inflamed gums.

3.  Sore muscles, especially in the back of the neck where the spine enters the cranium. This comes with an irresistible urge, sometimes, to stretch my muscles. When I am actually stretching or massaging my muscles – those are the only moments during a crash now where I feel any sense of relief. For that reason, when I’m crashing now, I want to stretch constantly.

4. Twitchy muscle muscles in my extremities. I feel like my lower legs, hands, and fingers, are slightly out of my control. When a crash is at its worst, it becomes difficult, almost impossible, to perform tasks that require fine motor skills, like writing with a pen or typing on a keyboard. This is extremely frustrating.

5. Gut inflammation. After I eat a meal, my gut feels swollen, inflamed, and overactive. I am learning that what I eat makes a big difference in how I feel for the next 2 to 3 hours when I’m in a crash. Sometimes, when symptoms are at their worst, I feel nauseous and lack appetite. This is concerning because I am already at the lower end of the range of what I should weigh based on my height and age. I can’t afford to lose any weight. 

6. Shortness of breath, and a feeling of inflammation in my nasal passages. Sometimes, the symptoms include a slight postnasal drip.

7.  Headaches. Often, I have a slight headache, especially when I wake up in the morning.

8.  Tachycardia. Sometimes my heart feels like it is beating too fast, although my Apple Watch often indicates that, even when I have this feeling, my resting heart rate is more-or-less normal. It is not clear if I truly have tachycardia or merely the sensation of it. But, I know that when I lay down to sleep at night, the sensation of tachycardia makes it difficult to fall asleep.

9. Fatigue.

10.  When crash is very bad, an intense thirst in the back of my throat and tongue that is barely abated by water. I have never experienced anything like this before. 

What is different this time?

Although, in most ways, it seems like I “picked up where I left off,“ some of my symptoms are different than before. For example, the sensation of twitching and disconnection with my extremities feels worse than before. Although I recall feeling this way in the past, this was never a top symptom. Now, it feels like it is the most concerning and difficult to deal with.

The gut inflammation that I am now experiencing also feels different from the SIBO that I was dealing with prior to 2019. This inflammation feels like it is in the stomach and large intestine. Instead of coming with constipation, like I had back in my SIBO days, I now have the opposite issue. But only during flareups.

The Plan

I had an appointment with my integrative medicine doctor on July 15. She ordered a new battery of blood tests, and a urine test. These tests are simply to make sure that there’s nothing new that wasn’t present in my pre-2019 blood tests, which were comprehensive.

Meanwhile, I started a health chart again to keep track of my meals, activity levels, and to give each day a numerical rating in terms of my overall symptom levels, on a scale of 1 to 10. I’m looking to find any kind of cause-and-effect relationship with these crashes; to gain any type of control over them, even if slight. 

Coping with it

Having spent very little of the last seven years, thinking about M. E. And MCAS, it is jarring to suddenly be back in this world, to be tracking how I feel from day to day, paying closer attention to literally everything I do. In some ways, it is easier to cope this time because I know that remission is possible. I’ve been there. I also feel like I tried a number of treatments the first time around that ended up being a waste of time and money. In that sense, I feel as if have a headstart this time.

On the other hand, it is disappointing because I had tricked myself into believing that I might be in some sort of permanent remission. Over the last seven years, I recovered from many viral colds, flus, and COVID-19 (twice). Bouncing back from all of these other viruses, without slipping back into remission, started to give me a sort of carefree attitude about my health. I got to the point where I never worried that picking up a cold or flu would trigger worse symptoms or become chronic. Now, even if I achieve remission again, I will probably always  know that it’s possible that another relapse is potentially around the corner. 

But, on the positive side of things, if you would’ve told me years ago that I was going to have seven good years of remission, and if I could’ve chosen any time to take those seven years in my life, I would’ve chosen the exact seven years where they actually fell. As it happened, those were the seven years when my daughters went from being too young to understand any of my health issues (ages 7 and 8), to now, being young teenagers who are starting to assert their independence. I believe that there was something special and wonderful about being a parent of kids in the age range of about 7 to 12. That is the age where children start to be able to have rational conversations, to exercise reason, and to see the wonder and magic in the world, but before they become “cool“. I feel incredibly fortunate that I was able to experience those years as a parent without worrying about my health, crashes, and such. 

I have had a talk with my kids. They had a vague understanding previously that I once had some sort of chronic health condition, but they didn’t know any of the details. Now I’ve explained that there might be a "new normal." They seem to understand and have been quite sympathetic.  

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. 

                                                                         _____________

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.   
                                                                            _______________

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.)