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

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

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.  


  1. I've been battling ME/CFS for a long time, including SIBO and chronic viruses & bacterial infections. I stumbled on your site because I'm considering ways to boost my immune system, and found your very old post on Thymic Protein. In hindsight, did the Thymic Protein help boost your immune system? I've been sick non-stop w viruses this year and I can't take it anymore... I want to do a combo of Thymic Protein and astragalus (limited funds, this is the best i can do... Ideally, I'd love to try IVIG).


    1. Hi. Sorry to hear about your frustrations.

      Thymic protein is one of the few supplements that I have consistently stuck with over the years. It’s too expensive to take all the time, so I take it when a downturn or crash is coming on. Of course it’s impossible to tell for sure how effective it is, but I believe that it contributes to pulling me out of viral crashes. I took it just today.

  2. interesting.... do you recommend thymic protein (eg Proboost) over thymus glandulars?

    has astragalus helped? (it's in equilibrant, but maybe you've taken it separately)

    Ideally, I'd try astragalus + proboost, but finances only allow for astragalus since it's inexpensive as far as supplements go...however, if it's a waste of money, then it's better to save for proboost..


    1. I've never tried Thymus glandulars so I don't know which is better. I do believe that Equilibrant does help modulate my immune system. I pulse the doses now - 4 days on and 3 days off. I have never tried it alone, i.e. not as Equilibrant.

  3. Patrick, what happened to the far infrared sauna? No go?

    1. I still use it about once per week, or two. It seems to help, but obviously is no cure.