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@gboi I did the reddit thing and not much help. I have had 5 tri tests. It started with methane 71 and after tons of stuff the 5th test indicated my methane dropped to 25 but hydrogen which I never had before jumped to 30. It isn't just my age. I also have been diagnosed with MTHFR which supposedly can lead to SIBO. And my appendix ruptered at age 19. Since then I've had two other abdominal surgeries. Motility is a serious problem both for the constipation which never let up and the esphagus which also gives me heart attack symptoms. I've tried over 15 different motility supplements and 3 prescription ones. U of C says the new jona stool test tells you what your body is lacking and what it should avoid. It cost $500 so I'm hopeful. Can you take a lot of the tests for Mayo at home to reduce the time needed? If the jona test doesn't help I will try them. How long did you have to stay?
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@retiredbabe
It sounds like you have been through a lot, but are desperate for some kind of resolution. Sadly, a lot of people find themselves in these shoes, so I am just going to break things down so even if they are not explicitly relevant in your case, it may help someone browsing later on.
I have visited Mayo twice, about 3 years apart. Both times was a ~one week visit. You arrive day 1 and meet with one or two doctors, and based on your medical history, they will assign tests over the next 3-4 days to fill out any gaps in your chart. They may be things like stomach endoscopies + aspirations (the gold standard to diagnose SIBO), or eating food with x-ray dyes and monitoring digestion with x-rays to evaluate you for dumping syndrome. Again, it depends on what the doctors think is relevant for your specific case. Then, at the end, you meet one last time, they explain their thoughts, and then send instructions on how they think that you and your local doctor should proceed.
One hopes that by going to the Mayo clinic or similar top clinics, that they get confirmation that the existing diagnosis is correct, and that they are trying to treat the correct issue.
SIBO is notoriously hard to diagnosis, plus it overlaps with IBS, which itself is a catch-all term for otherwise inexplicable digestion issues. Knowing what condition you are dealing with is half the battle.
SIBO is also notoriously hard to treat. Even the best antibiotics have about 50% chance of working the first time, and in a lot of cases the issues come back, giving a much lower overall success rate. That's why I recommend going to a forum like reddit where people document what exactly they had (and how it was determined), what they tried that did not work, and in some cases, what they tried that did eventually work.
The success cases all seem to have the pattern that they tried various compounds (supplements or Rxs) for a long time, while also manipulating their diets. It obviously takes some faith that some random cocktail will work since the results are not instantaneous, but for people that have suffered for years like it seems that you have, there is no other alternative.
Hope this helps, happy to share more thoughts or expound further if you have specific questions.