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

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

Monday, August 27, 2018

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. 

Wednesday, July 11, 2018

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. 

Monday, July 9, 2018

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...

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 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 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:


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. 

Thursday, June 28, 2018

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.... 

Friday, May 18, 2018

Working on a whole host of problems


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 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.  

Tuesday, April 24, 2018

Appointment with Dr. C

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


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.   

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.