alt Hacker NewsOnly tangentially relevant, but I’ve dealt with mouth and gut microbiome issues my whole life, the latter exacerbated by a strong antibiotic I had to go on in mid 2017 for a super resistant staph infection. L Reuteri supplementation and “L Reuteri yogurt” was one of those alternative methods I read about (though I’m skeptical that reuteri is the dominant strain in this “yogurt”)
Doctors don’t really care to look at these kinds of issues. It took years of suffering and autoimmune issues (particularly muscle spasms and joint pain) alongside gut problems before I demanded a gastroenterologist test me for H pylori and SIBO: I was positive for both.
H pylori was a painful treatment process, but I cleared it after one round of quad therapy. SIBO on the other hand, a condition I think we hardly understand, has been hard to deal with. Many rounds of rifaximin with very minimal relief and no real answer as to how to deal with it.
Doctors are hesitant to help, so I’ve resulted to a lot of personal experimentation to deal with it. The only thing that ever worked (and it’s just anecdata so unsure) was sulbultiamine supplementation, but I can’t actually get that anymore and normal thiamine doesn’t help.
This is all to say: I think microbiome is supremely important to health, very few things seem to really impact it, and doctors are hesitant to deal with these systems at all. I’m sure FMTs will become much more popular for a variety of conditions, but it seems like it’s a real risk where not only might someone else’s microbiome not be a fit for your physiology, but you could be inheriting a variety of risks the donor is susceptible to but you are not.
I am not a doctor and much of what I’m saying may be wrong. Don’t quote me please.
Replies
> Doctors don’t really care to look at these kinds of issues. It took years of suffering and autoimmune issues (particularly muscle spasms and joint pain) alongside gut problems before I demanded a gastroenterologist test me for H pylori and SIBO: I was positive for both.
I went through a similar post-antibiotics gut nightmare. There are good doctors and there are bad doctors and like everything, there are fewer good ones than bad+average ones.
Seems like you got testing and treatment eventually, I'm sorry it didn't work better; I'm replying less for you and more for anyone who encounters similar. Shop around for your docs!
I got tested very quickly for both H Pylori and SIBO in 2019 on doctor suggestions, I'd never heard of either. Sounds like this was probably around the same time as you went through this based no the antibiotic course that messed up your gut being in 2017).
I went to three doctors in six months, the one that did the testing was the second one. The one who was confident in their knowledge but didn't do anything, including the testing -> immediate no-return-visit from me. The one who said "we don't really know how this works" but also didn't do anything -> no return visit, but appreciate the candor. The one I went back to is the one who said "we don't really know how this works, but let's test for these other things we've learned more about recently, and let's also try some experimental/off-label things." I was actually negative for both of those things, so there was even more random stuff beyond that, but the only one the doctor I liked was really resistant to was a poop transplant, though personally... seems like the only known way to repopulate some of the shit, pun intended.
Not a doctor either.
Japan seems to love creating fat soluble forms of thiamine. I've been experimenting with a form of thiamine called TTFD. TTFD is synthetic, there's a natural form called allithiamine, derived from garlic. There's also another form called benfotiamine. All of these are fat soluble and highly highly available forms of thiamine. TTFD in particular is associated with paradoxical effects where a person can have a temporary worsening of thiamine deficiency symptoms when first consuming TTFD. Thiamine is generally considered very safe, but these supplements are pretty hefty doses, so I would suggest treading lightly.
There's also some thinking amongst some doctors that sub-clinical thiamine deficiencies being more common than most doctors realize [0] [1]
[0] Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition
[1] https://www.sciencedirect.com/science/chapter/monograph/pii/...
> Doctors don’t really care to look at these kinds of issues
Perhaps for good reasons?
The science is messy, there are few proven interventions and every woowoo worrywart will be pestering their doctor. Your doctor is in an unenviable position.
With doctors in New Zealand, my one trick is to find good specialists and pay them privately.
I believe that a GP only helps point you in the right direction. Our public health system is mostly too overloaded to help (unless you have a critical problem and your GP helps you get in a queue).
Not sure what helps in other countries.
But I 100% agree that you need to take responsibility for healing yourself. Only you have the motivation, and the context and experience to judge your own problems -- however one needs to take care not to get caught in irrelevant or misleading deadends (especially when mislead by corporations or alternative woowoo freaks).