Confused about methane SIBO diagnosis + treatment plan

Hmmmm, @lucyvt you have so, so much going on. I do have a couple thoughts.

You may want to go to the Connect home page and see what you can find using the search feature. I want to do this as well but it may take me some time. I will let you know if I find anything.

You must take medications and they may come into play. Your conditions may not all be isolated things going on.

Have you considered going to an academic medical center, or one that takes an integrative approach to your various treatments, perhaps finding a possible root of what is going on?

You can certainly pursue an appointment at Mayo Clinic either with one of your doctors referring you, or pursuing yourself. Use this link: http://mayocl.in/1mtmR63

@lucyvt @jlharsh I forgot to say my methane was 53 ppm at baseline and rose to 79. So it was high at baseline already during the SIBO test.

@jlharsh My Gastroenterologist is at Dartmouth, as are my 2 new cardiologists - one for the HFpEF (heart failure) and the other for the Afib. My rheumatologist is independent and she is really the most integrative of all of my doctors. My pulmonologist, PCP and endocrinologist are at University of Vermont. I forgot I have osteoporosis and adrenal insufficiency. Both Dartmouth and UVM are teaching hospitals. Thanks for the thought about Mayo Clinic. I will think about it. I do not travel much as I have a medically involved dog, and it is hard to find care for him.

@beebe yes i have to use the white bottle tide scent free one bc i have terrible eczema if i use any other

Well - a lot for sure. My story shortened. Couple years ago it began with terrible gas and constipation/diarrhea cycle. Found that I has pancreatic insufficiency so started taking CREON. Symtptons continued. Breathe test showed high methane and low hydrogen. Started with Rifaxin & Neomycin. Two treatments and seemed good, for about 6 months and then the same again. Did this a couple times - back to gas and constipation. Did a lot of reading and research. My opinion (not a doctor) is that my problem was not the Archaea in my small intestine ( that is a symptom, not the problem), but that my digestive system is out of whack. More research and found that anti-microbials can work against the Archaea (Emulsified Oregano OIl, Atrantil, Berbedine, Allicin, NEEM, MCT Oil and a few more). But I also found that my motility was also an issue, so other supplements. Then I found through research that the gut gets irritated and thus supplements to help the gut health.
Then I found about the Migrating Motor Complex (MMC). When I eat in between meals, it messes with the MMC timing, which leads to incorrect digestion. We a get away with a-lot of things when we’re young and the body has excess capacity, but when it goes off of perfect (mine is low on digestive enzymes) then digestion is more difficult. Then I realized that my problem had to do with timing of eating, what I’m eating and supplements.
Abbreviated results: This is what I did and in 4 months, my gas is gone and daily BM without stress or difficulty (you may be different but this helped me).
1- 64 oz of water per day, Body needs it work correctly.
2- Three meals per day (5 hours apart) with no snacking (anything with calories - soda, coffee etc). Snacks stops the digestive process temporarily and get the digestive capacity out of whack.
3- Low FODMAP as much as possible but try to keep it balanced.
4- Anti-microbials to kill off the archaea in the small intestine (it shouldn’t be there).
5- Gut health ; Ginger, L-Glutamine, Iberogast, Artichoke/Ginger, Tributyrin, Tumeric/Curcumin, Coc-Q-10 and Zinc-Carnosine.
6- Motility help: Miralax and Sunfiber prebiotic, but be careful of anything with inulin (possibly problematic).
7- I had low B-12 and Iron due to the archaea (showed in my blood test) so I took liquid B12 and iron.
8- These helped a great deal but wasn’t perfect. I then had an Endoscopy and it turned out that I have multiple enzymes that are low ( not zero) but lactase and sucrase were both low enough that I need supplements to help. After learning about and taking a couple of low priced enzyme supplements, I have stopped all other pills (other than CREON) and life is good.
The digestive system is slow and it is difficult to correlate what we eat vs the results. A bit of patience is going to be required.
Now, my diet is :
Sardines a couple times per week, eggs, salmon a couple times per week, lean beef twice per week and mostly chicken other than those items. This gives me good Omega 3 and other beneficial amino acids, good protein. (Note: some sources of Omega 3 are not the best, it can be confusing). Stay with the 64 oz of water, 3 meals, and a diversified diet. I take an occasional probiotic, but not every day. I’m still working to see what works for me, so I’m diversifying my diet slowly. So far - so good.
Talk to your doctor / dietitian about these and see if any of them make sense for you. Hopefully you can get your body back in sync and happy again. One last note: some of the chatbots are good research tools to quickly give you an easy way to correlate opinions and data. I use a couple of chatbots to see if they agree. Good luck.

From my experience with SIBO, I was not given any meds that treat symptoms. It’s important to treat the cause. Antibiotics are not helpful for SIBO and actually can be a reason you have SIBO. It’s important to increase good bacteria in the gut. I was put on prebiotics and probiotics to build the good back up. I was also helped to change my diet and went dairy free, gluten free (gluten is not good for the digestive tract), and sugar free. Bad bacteria feed on sugar. I substituted stevia to get off sugar to add sweetness to my coffee or tea. I went off dairy products from cows but could eat dairy from sheep and goats milk. There are plenty of gluten breads, pastas and other items. Pasta from Italy is good as Europe grows a completely different wheat. And one bread that’s also ok is sourdough because it’s been fermented. Other fermented products that help the gut are Kefir, kombucha and Greek yogurt. A good nutritionist can help you.