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.)

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. 

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. 

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... https://forums.phoenixrising.me/index.php?threads/blogger-katarina-voss-writes-a-comprehensive-article-on-treating-icc-me-with-antiretrovirals.60633/

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

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 patients...in 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:

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. 

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.... 

Working on a whole host of problems

SIBO

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

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.  

Appointment with Dr. C

I had my latest appointment with Dr. C, a well-known ME specialist in California, yesterday. 

SIBO

The conversation quickly turned to SIBO because of the abdominal symptoms I reported to the nurse.  Dr. C said SIBO is a very serious problem for a large number of his patients.  He states that the enteroviruses which he believes causes ME often take up residence primarily in the GI tract.  When this happens, the viruses can shut down the functioning of the autonomic nerves which regulate the waves of contraction (migrating motor complex, or MMC) which normally push food through the small intestine.  The food then stays in the small intestine for too long, essentially stagnating, which leads to the overgrowth of bacteria in the small intestine.  Most of this information was already known to me--it is covered in SIBO books and websites--except for the theory that enteroviruses are the cause of the failing MMC.

Dr. C essentially said that SIBO was only recently discovered and there is no definitive cure (again, something I knew but was interesting to hear from a real, live person).  He has had some patients who couldn't pass BMs for two weeks at a time.  He said that sometimes he prescribes azithromycin, not because of its antibiotic qualities, but because a side effect is that it causes diarrhea.  Dr. C in fact prescribed me three weeks of a Z-pack.  Frankly, this sounds like a temporary solution to the low motility problem and I'm not sure if it would be worth taking antibiotics unnecessarily.  I don't think I will fill the prescription.  [4/26/18 edit: I changed my find after coincidentally reading about low-dose Z-pack as a motility solution for MMC issues in SIBO the day after the appointment.]

As an aside, Dr. C also mentioned that his SIBO patients who qualify for IVIG tend to become regular for the first two weeks after their IVIG infusion.  Somehow the correction of the immune system triggers the MMC to reactivate for a couple of weeks.  

Dr. C also wonders whether, after they find a cure for ME, patients' GI tracts will return to normal function or if the nerve damage is permanent.  He said that he suspects it will return to normal but he may have been saying that because of the worried expression on my face.  

Other Treatments

It is rare for me to visit Dr. C and not walk away with a new treatment to try, but at this time he is out of ideas for me (except to give dihydroquercetin another try).  He did however, give a run-down of the promising leads in ME treatment research in general.  Dr. C said that four or five drug companies are all working on retro-viral drugs currently and that this area of research is a "hot new topic" for drug research, or words to that effect.  (He gives some version of this same speech each time I visit, and I understand that the process of researching and developing ARV drugs is very slow, so I take it with a grain of salt.)  He also said that anti-viral drugs can be specific to a certain type of virus, giving the example of a Hepatitis C drug that only works for Hep C and not Hep B or HIV or anything else.  Presumably the drug companies are working on something more broad spectrum, or else what are the chances their work will help ME?

Usually when Dr. C mentions other ME researchers, he does it to contrast his theory with theirs, explaining why he thinks he will be proven correct (not them).  This time, however, he gave high praise to the work of Ron Davis and Mark Davis and their work to reactivate T-cells.  (This was discussed in a Health Rising article in December, 2017).  He thinks their work could be a big breakthrough for us.  

Personal Exam

As usual, Dr. C noted that my lymph nodes are swollen (he was surprised they didn't hurt) and my throat looks red and raw.  I've had these chronic issues for so long I don't even notice them any longer.  They are truly the least of my concerns and in fact I forget they are even there. 

When Dr. C first walked into the examination room he immediately said, "you've lost weight."  I hate to hear that because I feel like I'm getting too low, and it was scary to think that a person who sees me only twice per year could tell immediately. I've only lost 10 pounds since I last saw Dr. C, but apparently it was enough to be noticeable.  I really need to update the picture of my face on my blog because I look nothing like that anymore.  

Overall, I came away from the appointment feeling disappointed.  Of course, all of us in the ME community know that even if they find a cure, some of the damage that ME has already done to our bodies may be irreversible.  This is mentioned from time to time on message boards.  I know it's true but I try not to dwell on it.  Hearing it from Dr. C made it seem very real and that saddened me.   

Very brief update

The main focus of my treatment plan right now continued to be treating SIBO.  When my guts feel like they are going to pop like a balloon, it's hard for me to concentrate of much of anything else. I do, however, feel as if this is ultimately a good thing because it has forced me return to a better diet.  In my first few years after falling ill with ME in 2011, I was a strict adherent to a diet of no-processed foods, no processed or added sugars, and very few grain-based products.  Over the years I slowly started to slip.  Now the SIBO has forced me to return to a more natural, whole-foods based diet.  

In any event, after a month on two SIBO antibiotics, I went back to my doctor (Dr. M) and reported that my symptoms of SIBO (mostly a feeling of bloating) had improved by about 80%.  Some days the symptoms were gone completely (but that was also true even before treatment).  Dr. M said most SIBO patients, especially, those with the methane-producing form of SIBO, require two one-month courses of Xifaxan and Neomycin.  So I'm back on those two specialist antibiotics for the gut. In the mean time, it is so nice to have some relief from the more intense symptoms.    

Progress on SIBO treatment

In my last post, I wrote about my doctor's SIBO protocol.  I'm now only a couple of days away from finishing the protocol.  My symptoms (mainly a feeling of inflammation and bloating in the gut, especially after meals) have improved, without a doubt.  I now have many days where I have no symptoms at all, and other days where there are only minor symptoms.  This has been a significant improvement in quality of life, and for that alone, the treatment was worth it.

The problem is that I still have low-level symptoms and I can tell that if I stopped treatment today, it is likely the symptoms would come back just as strong as before. I half expected this because most of the the SIBO sources online emphasize how difficult it is to get rid of SIBO--especially when one has the methane-producing variety of SIBO, as I do.  Some people are clearly at the point of believing that it can never be cured (although it's not clear if they have tried a protocol similar to the one my doctor prescribed).

My doctor's instructions state that if at the end of the one-month protocol I am not completely symptom free, I should transition from antibiotics to herbal antibiotics for continuing treatment.  This is what I plan to do...   

My doctor's SIBO protocol

I'm still trying to find an effective treatment for SIBO.  My symptoms seem to "come and go" but they never fully "go."  There's  always at least a hint of them.  When they're "there" - which is at least 50% of the time - it feels like my whole abdomen (from the bottom of the rib cage down to the pelvis) is bloated, swollen, and inflamed.  It feels like my gut will burst. It is uncomfortable to sit upright in a chair and especially to bend over.

One of my doctors (Dr. M) states that she treats many cases of SIBO and has had success with bringing patients into remission. I decided to try her recommended course of treatment.  It is complicated.  For other SIBO patients looking to compare notes, here's what I'm on:

1.  SIBO specific diet, combining Anti-FODMAPS and SCD diets.

2.  Xifaxan (antibiotic) 550 mg tablets, 3x daily with food for 30 days.  After 1 week, add Neomycin.

3.  Neomycin (antibiotic) 500 mg, 2x daily with food. (2 weeks on and 1 week off for 2 cycles.)

4.  Stopped taking normal probiotics and started taking Prescript Assist, which is soil based probiotics.  Somehow, this probiotic is supposed to be better for people treating SIBO - I'm not sure why.

5.  Interphase Plus: 1 capsule daily between meals. This is to break up "biofilm" that can line the intestinal walls.  The biofilm creates an environment for the "bad bacteria" of SIBO to grow and protect itself from the immune system, according to Dr. M.

6.  Phosphotidylcholine.

7.  Emerson Allimax, 1 capsule 3x daily with food (because I'm a "methane producer" SIBO sufferer).  This supposedly kills a certain type of microflora that produces methane.

8.  Iberogast.  This is a "motility" agent - it helps food pass through the digestive system more quickly.  Food that stays in the system longer than it should tends to ferment, leading to SIBO symptoms.

9.  Digestive enzymes with each meal.

My doctor's protocol includes an option instead of the antibiotics (numbers 3 and 4 above) to try an herbal antibiotic protocol.  After researching the pros and cons, and the success rates of both, I decided to try the regular antibiotic protocol.  Both of the pharmacological antibiotics are specific for gastro-intestinal treatments.  They do not absorb into the bloodstream - rather they pass right through the GI tract.

The Xifaxan was not covered by my insurance company so I had to order it online through a Canadian Pharmacy.  It was still expensive, but would have been about 4x more expensive had I ordered it from an American pharmacy.

Thus far, I'm about 2.5 to 3 weeks into the protocol, and I changed my diet to an Anti-SIBO diet in late December.  Unfortunately, I still have symptoms, although they haven't been as severe since changing my diet.  I'm worried I'll get to the end of the protocol and still have issues.

One aspect of the protocol I haven't implemented yet is the Iberogast.  I will start that in two days.  I also haven't ramped up to 3 Allimax per day (only 1 so far), so there's still hope that I just need to give the protocol more time... 

Obviously, this diet is tailored for me by my doctor, based on my individual test results.  Please don't anyone else try this, or any part of it, without consulting a doctor. 

Watched "Unrest" the Movie

I was beginning to feel guilty that I hadn't seen the movie Unrest yet, even though it's been available to stream for several weeks.  It almost feels as if it is the duty of every ME patient to see it and so my wife and I watched it last night on Amazon Prime for $0.99.  (Also available on PBS.com for free.)

First, as in most posts on my blog, I assume you're either an ME patient or an advocate, and you're generally familiar with this movie even if you haven't seen it yet.  Let's skip the usual introduction/summary.  Suffice it to say, Unrest is a documentary film written, directed, and starred in by ME patient Jennifer Brea about ME.

The filmmakers speak to two completely different audiences simultaneously: ME patients and those who have no real knowledge of ME.  Unrest seems aimed more directly to the latter (non-patients), with satisfying undertones that only patients will recognize.  The film neatly accomplishes this dual-level communication without losing direction.  The reviews from non-patients, mostly professional reviewers, have been  universally positive. It has a 100% Rotten Tomato critics score.

As a patient, this was a different viewing experience from almost any other film.  Normally, I sit down to a movie and my attitude is just: "Entertain me, Movie!"  With Unrest, I felt almost nervous.  The focus is on severe patients, as it should be. (I am not in the severe category.)  But, this film and the severely ill patients depicted in it will carry the flag for all ME patients.  Unrest will speak for all of us even if that wasn't the intention.  I worried that it could present the disease differently than I would have hoped--every patient has a slightly different perspective on how ME should be be presented to outsiders.  So how did it do?   

The challenge in trying to present ME to the uninitiated is, "how far down the rabbit hole do you go?  How far is the audience willing to follow before they say, this is crazy, and tune out."  Brea and her team chose to go pretty far down some rabbit holes (the camper in the desert, the mere mention of fecal transplants, for example), perhaps realizing that this was necessary to capture and maintain a general audience's interest.  They needed a hook. At the same time, they always manage to pull the perspective back and make the point that, one, they are aware this seems crazy, and two, they were only driven to these extremes as last resorts, by the unbearable frustration of having so few resources for care, treatment, and research available.  Every time the filmmakers started down a path that made me begin to question their choice (Is this rhetorically counterproductive?), they ultimately justified their choice through the strength of the overall narrative.

It is astonishing that Brea and her team were able to pull off a movie like this.  As long as I've been a part of the ME community, there have always been various attempts to raise broader awareness for ME, many of them moderately successful but seeming only to reach others in our community.  Over time, it's tempting to think that this is a cursed disease and nothing will ever change.  I would not have thought it was possible to create a movie of this quality about ME and to achieve the broad distribution, awards, and promotional backing of Unrest. That's the real accomplishment.  A large number of people outside of the ME community are actually seeing this movie.

Unrest will pay dividends for ME patients for many years to come. The next time there's, say, an NIH hearing about the future of ME research, this movie and its successes can be referred to as evidence of a growing public demand.  Nobody's going to want to be the next Per Fink (hopefully), standing in the way of medical progress.  On an individual basis, if a patient's family member or doctor doubts them, they can refer the person to this movie.  (Even if the referred person never watches the movie, its mere existence lends credibility.)

This movie should be mandatory viewing for every ME patient and their family members and caretakers (if they're willing).  It is an emotional experience and it will be difficult for many patients to be reminded of how much they've lost.  But it is unquestionably worth it (if you can handle it).  I can't say enough how impressive it is that Jennifer Brea and her team were able to pull this off.  Brava.

My 2017 in review

For those who don't regularly ready my blog, I give myself a daily rating of my overall health and keep it on a spreadsheet along with notes about changes to my treatments, diet, etc. I've been doing this every day since 2011. At the end of every month and every year, I calculate monthly and yearly averages.  The hope is that this will help me figure out what treatments, foods, and lifestyle changes led to improvements or setbacks.  It has worked sometime and other times left me with no answers.

The average of all my daily health ratings for 2017 was about a percentage point lower than 2016.  In fact, it was the third straight year of decline.  From 2013 to 2014, I experienced a major improvement in my health rating average, and the improvement was noticeable "in real life" too.  2014 was my best year, but I have regressed by about one percentage point each year since.  If this trend continues into 2018, I will be back at about the same average as 2013 by the end of the year.

I feel generally about the same as I felt in 2014 -- my best year -- or maybe only slightly worse.  One of two things is happening: One, I've simply forgotten how much better I felt in 2014 as my health very gradually regressed over the course of 4 years.  That's very possible.  It's also possible that I'm grading myself more strictly as the years go by.  I do seem to recall that I used to focus more on my main symptom of ME:  PEM/flu-like malaise.  I think in 2014, I used to rate a day highly if there was little or no PEM but in spite of the fact that I might have another strong symptom like prostatitis, shortness of breath, or kidney aches.  It's possible that in more recent years, I have started to count these other symptoms (which are all obviously related to ME) more in my daily rating.  Maybe it's a combination of both.
                                                                    ________________

In the first half of the year (February) I had to conduct a fairly stressful 2 week arbitration at work.  January was also defined by stressful preparation for this arbitration. After the arbitration was over, my health seemed to crash and I think it took me most of the rest of the first half of the year to get back on track after that.  I had a good run from May to July.  It's unfortunate, but I don't think there was any way I could have turned down the arbitration - I had to do it. 

The second half of my 2017 was defined by the onset of what I now believe is most likely SIBO.  Abdominal tenderness and bloating set in on a very specific day in early August.  I remember the day clearly.  Ever since that day, I have had bouts of tenderness and bloating on and off, but mostly "on."  Recently I had a positive SIBO breath test.  Despite the SIBO, however, my best month ended up being December. I don't know how to explain that except for the fact that I had just resumed taking phosphatidylcholine (PC), which also seems to make me feel better at first. 

My GI doctor's take on SIBO

I had an appointment with a gastrointestinal specialist (Dr. L) today to discuss the results of my recent positive SIBO breath test.  Mostly I was curious if the diagnosis of SIBO is taken seriously in "mainstream medicine" or if it's considered a sort of "fringe" diagnosis.  I also wanted to know how he would propose treating it, to get a second opinion.  (Dr. M. has suggested treating with the antibiotic Rifaximin.)

Dr. L said that he usually only discusses SIBO after he has ruled out all other potential causes of symptoms.  "SIBO comes last," he said.  He said that a few years ago, he used to be more interested in SIBO and would jump to a SIBO diagnosis more often, but he also said he considers it a bit of a "wastebasket diagnosis."  He explained that he used to treat SIBO with Rifaximin but he said that patients almost always came back in a few months when the SIBO had returned.  "...And I can't just keep prescribing you Rifaximin," he said.  Apparently, it was for this reason--futility--that Dr. L was less likely to jump to a SIBO diagnosis in recent years. He also suggested that the test results can be questionable.  Again, I wish I had asked more questions to clarify this, but I always seem to think of these questions when I'm driving away.

Dr. L said that when he does treat SIBO, he prefers probiotics (to "overwhelm the bad bacteria with the good bacteria") to antibiotics, although he is not adverse to trying antibiotics once.  Despite his reluctance to diagnose SIBO before other conditions have been ruled about, he did admit, without prompting by me, that my symptoms do seem consistent with SIBO.

In the end, he sent me away with some samples of VSL#3 and told me to try to treat if with probiotics, and if I still didn't feel better in a few weeks, I could call back. However, he said that if I call back, he would first have to rule out other possibilities by either doing a CT scan of the abdomen, and/or scopes, and/or stool sample testing.  (My feeling is these would probably not lead to anything useful.)  Previously he had ordered an abdominal ultrasound and some scopes and these were completely negative.

I have an appointment back with Dr. M (the doctor who originally diagnosed me with SIBO) on Monday.  I'm going to see if she can get me approved for one round of Rifaximin to see if it helps at all.  If not, I will try the probiotics/diet/herbal antibiotics route. 

More on SIBO

When I last posted about SIBO in December, I had been told verbally by my doctor's office that the SIBO test came back positive, but I didn't yet have the results. I was, at that time, slightly concerned that the test could be a false positive.

Now I've received the written results and I am less concerned with the possibility of a false positive.  I feel fairly certain that I do have SIBO.

SIBO breath tests look for increases in either methane or hydrogen after drinking a specified amount of glucose or lactulose.  While my results showed a slight increase in methane, they showed a very great increase in hydrogen.  One common SIBO test interpretation states that "a rise in hydrogen of more than 20 ppm after 90 minutes should be considered as diagnostic of SIBO."  In me, the hydrogen rose more than 80 ppm within 90 minutes, four times more than the minimum for a SIBO diagnosis.

Dr. M prescribed rifaximin, the most commonly prescribed antibiotic to treat SIBO.  When I arrived at the pharmacy, the pharmacist advised that my insurance doesn't cover rifaximin.  Paying for it on my own is not an option.  My plan now is to re-visit my doctor later this month (mid-January) and work with her to (hopefully) obtain insurance pre-authorization for rifaximin.

In the mean time, I have switched my diet to a common SIBO diet known as the low-FODMAP diet.  So far, this diet has helped with symptom control, but has not eliminated symptoms.   The bloating and discomfort I was previously having has been mostly gone since about day 3 of the diet.  However, I only switched to the low FODMAPS diet about 2 weeks ago, so it is possible this could be just another break in the symptoms (which I would get sometimes even before I changed my diet.)