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

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

Wednesday, February 28, 2018

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...     

Monday, February 12, 2018

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. 

Monday, January 22, 2018

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 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.

Friday, January 19, 2018

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. 

Wednesday, January 10, 2018

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. 

Sunday, January 7, 2018

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.)

Thursday, December 21, 2017

My EBV dilemma

I will return to discussing SIBO in my next post because there have been more developments for me in the last two days.  But in the meantime, I have no idea what to do about treating Epstein Bar Virus, if at all.  I rarely post questions to the ME message boards because I try to be respectful of the fact that everyone there is sick--often much worse than me--and has limited energy resources.  In this case, however, I was dying for more opinions so I posted the question below on Phoenix Rising.  I'm re-posting it here too:

I'm at a complete loss whether to treat chronic EBV, and I have two doctors recommending different things. I don't know which one to believe, so I'm hoping PR will have some opinions.  If you make it through this long explanation, thank you!

Background:  Since getting ME in 2011, I've always had positive IgG tests for EBV, with titers that are perhaps considered equivocal for possible reactivation.  I've been on an off antivirals such as Famvir, Acyclovir and Valacyclovir since 2011 and never noticed much of a difference in how I felt.  The drugs never made a difference in the antibody levels either.

Over the past 12 months, however, I have also had 5 tests that were positive IgM for EBV.  This got my attention more than the IgG because it's more suggestive of an active re-infection as opposed to relying on interpretation of IgG results.  Now I have two doctors giving me opposite interpretations and both seem logical.  I don't know who to believe and whether to focus on treating EBV.

Doctor 1:  She is an integrative medicine doctor who doesn't necessarily focus on ME, but treats many patients with Lyme, mold sensitives, MCS, etc.  While she has been useful for treating hypothyroid and a few other treatments, her judgment and medical knowledge can seem questionable. A couple of times she has suggested treatments that have no basis in science and seem to be almost quackery.  

She is the one who's been ordering the repeated EBV IgM tests and she, at my suggestion, put me on the doctor Lerner antiviral protocol a couple/few months ago.  This protocol involves high doses of Valacylovir: 1 gram, 3x/day.

Doctor 2:  Doctor 2 is known as one of the better infectious disease specialists in my area, but she is very much from the traditional school of medicine.  Although she is a former partner of the famous Dr. Chia, she doesn't know the first thing about ME.  She took one look at the repeated IgM+ results and said they are false positive. (This was consistent with my original understanding of how IgM antibodies work--that they are only present during the first 3-14 days of an infection.)  She said she didn't need further convincing, but if it would help convince me, she would order a PCR test for EBV.  I accepted. The PCR test was negative.

At first I thought the negative PCR test settled the issue once and for all: I don't have active EBV.  But then Doctor 1 said those results don't mean anything -- or rather that they just mean the virus isn't in that one sample of blood, but the virus could be in other parts of the body. 

Dr. Chia, by the way, also thinks the IgM test results are false positive.  It's two doctors with good reputations against one who is, in my opinion, questionable.  But then again, why me (why us)?  I would bet a normal healthy person wouldn't keep triggering positive IgM results.  

I can't decide who's right.  Any thoughts would be appreciated. 

[Edit:  There are some very insightful responses in the Phoenix Rising thread.]