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

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

Tuesday, April 24, 2018

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 retroviruses 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 retroviruses 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.      

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.   

Monday, March 26, 2018

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.    

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 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.


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.