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.