My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

[JES]

I really don't care if I annoy people by "spreading this info", but people need to make the final connection.

You don't need to go off topic here, we are well capable of reading your thread. I once again highlight that this forum has 45(!) threads on thiamine and in fact some very recent ones other than yours as well, which you can find using search (link). Have you read those?

I have and the conclusion is pretty clear. There is no evidence of ME/CFS patients having any kind of clinical thiamine deficiency. I suspect thiamine could work temporary in way of addressing some metabolic pathway dysfunction, for example in the enzyme pyruvate dehydrogenase that requires thiamine to convert from pyruvate to Acetyl-CoA. Because these pathways are dysregulated in ME/CFS rather than broken due to some inherited metabolic defect, adding one metabolic co-factor supplement to our stack is unlikely to solve much for most of us. Here is an article that speculates thiamine could work as some sort of metabolic stimulant. Interesting, but again my concern as with other stimulants as it that the effect is lost over time.

Moreover, people here (I dare speak for most) aren't new to supplements. Something as basic as thiamine would have come up early in our treatment experiments. If you come up with something that is not already commonly promoted by the supplement industry, it is more likely we would not have paid attention or tried it yet.

 

[Daffodil]

To Daffodil - I have severe gastroparesis/colonic inertia and bad IBS-C. What I don't understand is how are you or anyone getting testing like fecal calprotectin, Zonulin, sCD14 to check for leaky gut? I have gotten increasingly worse stomach/colon wise since having major surgery. Not one GI in Baltimore knows how to tell me "low volume" prep for colonoscopy. My GI who only let me do 3 Ducolax/ 10 oz mag citrate is off very sick - I can't do those 25 tabs, or drink 10 glasses of water, I can barely eat any food. I need this last colonoscopy - and GI's even Colo-Rectal Drs know zero about people w/ME who have extreme paralyzed tummy, paralyzed Colon. Do any of you have trouble emptying? Sorry, know this is about FMT's - no one does this in Baltimore, thanks Starlily88

Labcorp has many of those tests. Some I had done years ago through my then specialist, Dr. DeMeirleir. You can also order one of those 16s stool analyses...GI MAP, GI360, Genova, etc etc. I think GI MAP is even covered by some insurance companies. You can use RedLabs too....they have an office in both Belgium and Reno, and do a lot of these tests.

Gut motility can also be dependent on the microbiome. You need a doctor to make sure there is so structural issue - no blockages, no craniocervical issue affecting the vagus nerve.....and then I think you should look into FMT....it is not without risk but could help if done carefully IMO