SIBO - have you ever been diagnosed with it?

[Dr Carrot]

SIBO (Small Intestine Bacterial Overgrowth) seems to be popping up on a few threads recently so I thought I’d start a poll about the prevalence among S4ME users.

I suspect that it’s likely going to be a fairly low amount of people who answer yes to this, particularly as in the UK it’s difficult to get tested for.


This paper (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/) defines SIBO as:

Small intestinal bacterial overgrowth (SIBO), defined as excessive bacteria in the small intestine, remains a poorly understood disease. Initially thought to occur in only a small number of patients, it is now apparent that this disorder is more prevalent than previously thought. Patients with SIBO vary in presentation, from being only mildly symptomatic to suffering from chronic diarrhea, weight loss, and malabsorption. A number of diagnostic tests are currently available, although the optimal treatment regimen remains elusive.

I appreciate that the poll options don’t allow for things like “I treated it once successfully but then it came back” and “I don’t have a diagnosis but I think I have it”, but I wanted to limit things to simplify possible responses.

 

[Ravn]

I was tested and cleared of SIBO because my breath hydrogen levels were low. No mention of methane in the report but as I was sure I'd been tested for both I asked for the actual data from the breath tests. (This was a couple of years prior to my ME diagnosis although in hindsight I believe I already had mild ME then. I was only diagnosed after I'd exercised myself into moderate and declining ME.)

My hydrogen levels were indeed low:

• fasting hydrogen 1ppm
• peak hydrogen at 150 minutes after challenge 11ppm

Methane on the other hand was high – extremely high even:

• fasting methane 150ppm
• peak methane at 30 minutes after challenge 331ppm

For context, from the paper @Dr Carrot linked:

Elevated fasting breath hydrogen (>19 ppm or methane >10 ppm) are excellent predictors of overgrowth

I tried to get the doctor to review his diagnosis – three times - in view of the high methane levels but got no response. Gave up on the doctor and self-diagnosed (there were no other specialists in my region for a second opinion) and self-treated with the help of a herbalist and a dietitian. This was successful in significantly reducing symptoms but I've never had my methane levels retested so don't know if they've reduced, too. Please don't ask any questions about the actual regime; it was years ago and I simply can't remember and didn't keep records.

I still have significant GI issues linked to dysmotility. My guess is that the dysmotility is due to autonomic dysfunction and linked to ME. The SIBO was probably a consequence of the dysmotility at first before becoming an aggravating factor, creating a vicious circle:

Slow transit due to dysmotility causes faeces to back up which leads to SIBO.
SIBO creates lots of methane (in my case anyway, most people I believe produce hydrogen instead).
Methane slows transit time even further.
The further slowed transit time leads to more SIBO.
Etc. etc.

Of course that's just my guess though I have had a transit study done and it came out so slow that the gastro recommended removing most of my large intestine (I declined) so the dysmotility bit is documented. And a general link between methane and constipation/slow transit is documented in the literature.

 

[oldtimer]

@Ravn - I also developed idiopathic dysmotility 50 years ago during my latter teenage years, accompanied by a number of other problems which I believe were the start of my slowly developing ME. I had part of my large bowel removed in my mid twenties for a completely unrelated reason but it made no difference to the dysmotility.

It wasn't until twenty years later, around 1990, when CFS appeared on my radar, that I went all out trying everything there was to try for all my 'issues'. As part of that quest I had a gallium motility study done. It showed a pretty extreme problem (they told me after two weeks not to bother coming back for any more scans despite the marker still being spread out quite a bit). At the same time a hydrogen breath test was negative. I suppose if I didn't have any SIBO by then I wouldn't ever expect to. If I had a methane test - I don't remember - those results weren't significant either.

Off topic but as an aside, it was at this time that I decided I wouldn't bother with the medical profession again for ME/CFS or the dysmotility. Actually, the specialist told me that GP's wouldn't understand my bowel problem and he was right.

As ME patients, we all have examples of being judged, not believed etc. My decision to not use doctors for my dysmotility was the result of comments by a nurse during the gallium study. I turned up one day for a scan dressed in a black skirt and white blouse and carrying a violin case. I'm a (retired) professional violinist and was on my way home from work. In her tiny mind my fairly prim and proper clothes and instrument combined with severe constipation pigeonholed me perfectly. She asked if I was very religious! Being a confirmed atheist I was rendered speechless but it taught me that if you want to be taken seriously (and avoid being endlessly told to eat more fibre), some things are worth keeping stum about.

 

[Graham]

Have you seen this article? Do you know anything more about it? https://www.technologynetworks.com/...en-brain-fogginess-and-severe-bloating-307256

 

[It's M.E. Linda]

Have you seen this article? Do you know anything more about it? https://www.technologynetworks.com/...en-brain-fogginess-and-severe-bloating-307256

I had seen and quickly read the article earlier in the week. With a big increase in weight since my 2013 relapse and been taking probiotics, I had recently commented to a friend that I felt bloated, despite a decent diet and not over eating.

I plan to look into this a bit more. I started taking probiotics as I had many antibiotics during the repeated uti’s and the subsequent Sepsis. Perhaps I have been using them as a prop and should not be taking any longer.