I’m 2 years into SIBO and I’m so defeated by the gas, diarrhea, weight loss, and dead-end doctors

I have Hydrogen dominant SIBO, confirmed by 3 breath tests. One in February 2025, another in February 2026, and a third 3hr breath test in April 2026. I tested at 34ppm Hydrogen and an 11pm measurement for Methane (so barely over the threshold for the methane). My main symptoms are lack of appetite, loose stools, constant gas production, abdominal pain, inflammation, and sever bloating. Additionally I have done a stool test and tested negative for parasites but it showed I have 10/10 inflammation and 9/10 dysbiosis. I tested negative for H Pylori, celiacs/gluten intolerance, lymes disease. I’ve had a couple blood panels done.

My journey began with a GI that my primary care physician referred me too. My experience was like many others from what I’ve been reading. The GI was incompetent and honestly wouldn’t listen to me. I initially went in suggesting I believe what I have is SIBO and of course he wanted to rule other things out first. I had a CT scan and endoscopy as well as a little bit of blood work, all came back normal. I finally demanded a breath test and as I anticipated I tested positive for SIBO (hydrogen dominant). The GI just prescribed me a 2 week course if Xifaxan, which certainly helped my symptoms and made me feel much better while I was on it and shortly after ending. But as you can guess, it came right back in about a week.

So my next move was trying a functional medicine doc, this doctor wasn’t very helpful although she actually listened unlike the GI. She ran some blood work and essentially just looked for inflammatory markers. The only information that she gave me was that I was borderline positive for reactivated Epstein Bar. She gave me some digestive enzymes which I took with each meal but this didn’t do anything for me.

Back to the GI I go, they had me do another breath test (at this point a year after my original one). Same deal, positive for hydrogen dominant and they prescribed me 2 weeks Xifaxan and sent me on my way. The EXACT same thing happened. Felt better, then a week after finishing it was back again. At this point I began doing a ton of research on my own and started asking the GI questions— Can we try xifaxan+neomycin? Can you prescribe me prokinetics? Essentially they told me no and to just go for walks after my meals lol. (I do want to mention that I had a colonoscopy lined up, but ended up cancelling it as I didn’t feel it would be helpful for a bacterial overgrowth— is this something I should reschedule and get done?)

Fast forward to May. I began working with a different functional medicine doctor that I found online that specializes in SIBO. Indigo Health. This doctor was much more thorough. They had me do a stool kit, a 3-hr breath test, a much more detailed blood panel, and an h pylori test and lymes test (negative for both). The only info I got from these were: positive for hydrogen dominant SIBO, 10/10 inflammation, 9/10 dysbiosis, and from the blood panel she mentioned that one of my liver enzymes is missing an arm so therefore my liver is like 60-80% effective at detoxification. I am currently working this docs treatment and the plan is as follows:

SIBO biphasic diet for the entire duration of this treatment + she mentioned this might take years to heal. So she thinks I might have to stick to Phase 2 of the diet for 8-12 months after the initial 3 months For the first 4 weeks I was put on Xifaxan (we initially were going to do it with neomycin but I mentioned the meds I was taking [Adderall and Xanax as needed] and I read it shouldn’t be taken w neurotoxic drugs so she decided for me to just not take the neomycin) After the 4 weeks we shifted to antimicrobials (UVA Ursi with breakfast and dinner and Berberine with lunch) On top of all this, she has me on hundreds of dollars of GI support supps:

• Motility supplement upon waking (ginger and artichoke) • A digestive enzyme with every meal • A “GI Blend” supplement with breakfast and dinner • A “Microbiome” supplement with lunch • A powdered mix in the morning and afternoon that consists of GI Protect powder, Collagen complex, and Lecithin Powder pro • And finally before bed a supplement called “Indigo Bind” which is a mix of activated charcoal, Zeolite clay, and shilajit • She also put me on magnesium powder but that is on hold due to having watery stools

I am currently 7.5 weeks into this treatment and I will say that the diet has immensely improved my inflammation and bloating but the gassy discomfort is still there. Additionally I still have diarrhea, and many days it’s just liquid stools at that. I also do want to mention that I have lost 20 lbs in the last 3 months due to this diet. I did loose some weight prior due to the SIBO but not this drastic at all. Like 10 lbs over the course of a year.

I just ordered beet flow supplement and coffee suppositories for bile flow and I also ordered some Betaine HCl as well, just to see if my bile flow and/or stomach acid needs some optimization. At this point I’m willing to try anything, as this treatment is improving some things but I don’t feel the root cause is being addressed still, I feel like it’s more than just GI support/repair— something has to be not working properly, what is it?! The best I felt in a while was the last 2 weeks of the Xifaxan at the beginning of this treatment and I actually started having the first formed and very firm stools that I’ve had in 2 years (granted, this week I was on vacation… not sure if that had to do with it somehow but there’s that). Like right when I got back from vacation my stools went back to loose and mucousy, and then just downhill from there each week. Now I am currently 4 weeks from when I finished the Xifaxan and DAILY I have leaky gut all morning along with liquid stools (but not much gas/bloating/inflammation). Then after lunch I’m done sh****ng my brains out that feels better but I start to gain the bubble guts, has production, slight bloating, and general abdominal discomfort which gets even worse after dinner. At this point just feel so defeated.