I’ve had this disease long enough to at least consider climbing on every new band wagon that comes along. I’ve never really believed the hype about leaky gut but I tried the pre and probiotics for about a year once. Nothing happened except it made me more regular and helped somewhat with the diarrhea that comes at times with mestinon use. My personal opinion is that as myasthenia can be congenital, pass the placental barrier for transient myasthenia in newborns, and be transmitted to mice for experimentation via cells taken from blood that what’s in our guts probably isn’t the cause or cure for this particular disease.
It might also be pointed out that leaky gut is a relatively new concept linked primarily to the modern diet. The symptoms of myasthenia have been documented in medical literature since the 1600s and was formally given its current name in the 1800s. So for me this seems a bit implausible.
I also wonder about whether it’s a case of the disease causing any changes noted in gut microbiome and not the changes themselves causing the disease. Which came first...the chicken or the egg?
This is only my opinion and I’m sure others will beg to differ. If you want to give a shot, it won’t hurt. If you’re concerned about mestinon side effects, it might help with that.

Great response. Thank you. :-)

When I want to see what others with MG have tried I do a site search on this forum -- goes back to 2009 I think. The site search has the form exactly as the whole line below. It brings up the word probiotics or whatever you want. Lots of discussion about these and experience using them.

probiotics site:www.dailystrength.org/group/myasthenia-gravis

I am pretty skeptical for my own treatment of any medications, diets, or supplements that haven't been tested on people with my own problems. When I worked in medical research, we used to have to control for the placebo effect, -- if you get any medicine then about 1/3 of people do think they are improving even when it is a sugar pill. It is not that people are faking it, but rather that when one is reassured that they are doing OK and this medicine will make them better, they seem to actually do better. The mind seems to be quite helpful given the right cues.

Good Luck
Russ

Hi Russ -

I did do a search on this web site.......but wanted to ask the question. :-)

Thanks again,
Scott

I’ve done different searches as well but find the info can be limited or not a direct answer to my query. I find it useful to begin a new thread which allows for direct answers from current users.
I appreciate the search feature but it feels an awkward fit when I have specific questions. I also like the sounding board aspect of virtual support groups better than the google aspect.

I really like speechies answers and posts. You seem knowledgeable and really well spoken.
There is quite a bit of information on gut dysfunction and autoimmune disease. I take very good care of my gut through diet and probiotics and probiotics There is some research saying that people with MG have altered gut microbiome

Prebiotics ....and probiotics