Thanks so much for your indepth reply, I've already spent $30,000 out of pocket for my care for the last few years. For 10 months I even had a nurse helping me as I felt too awful to drive to Dr appointments and do basic things, that alone cost $10,000. Not to mention doctors who don't take insurance, acupuncture, massage, tried Naturopath, even went to therapist when I felt so frustrated in the beginning with lack of any comprehensive care, and unbelievable waits to even get a doctor appt, I felt so helpless and hopeless. The worst thing as you say is the being treated for individual symptoms, although some are so bad you are grateful if any go away, like my thyroid being knocked off line and the meds I'd taken for 35 years with no problem no longer worked, so I got cardiac problems related to that. Thankfully thyroid removal seems to have at least fixed that scary thing.

Yes I have done every test known to man, tested positive for SIBO Hydrogen, and have just ordered the blood test for the food poisoning antibodies too, as that could add some treatment options if the Rifaximin doesn't work. Did colonoscopy and endoscopy 18 mos ago which basically showed nothing wrong, so with my latest bout of wicked IBSD/Sibo and reflux, for now my GI doc just said go right to Rifaximin see if that helps. PPI'S and Histamine blocker didn't really work for my current Reflux, but maybe I didn't take them long enough, as we decided to go to Rifaximin thinking the extreme bloating from SIBO etc might be causing the reflux and mobility dysregulation. My throat and esophagus are really irritated, so he might want me to do the PPI's again but they didn't help much before. Did they help you?

Some ideas that might help you. Dr Pimentel advised, and 2 women developed an Elemental diet you do for 2 weeks, they've done clinical trials and had 80% success rate with SIBO, its called M Biota and supposedly tastes a lot better than the other ones out there, so people stick to it better. People who have had only temporary or no good result from Rifaximin are having some success with it. If my round of Rifaximin doesn't work or hold up for long , I'm going to try that next. Its $700 for the 2 weeks of drinks, but they will give you a 25% discount which is less than the $700 copay I have for Rifaximin. I'm also on my own going to do an Amy Myers gut repair concoction, couldn't hurt, and I just started the low inflammation diet Dr Pimentel developed, its a lot more food inclusive than Low Fodmap, much easier to stick to. He also is big on not eating for 4 hours between meals, which is really hard for me when I'm so bloated, because I can't eat much at once then get really hungry before 4 hours! Also you probably already know, not eating for 4 hours before dinner and elevating the head of your bed 6 to 8", which I did but doesn't help enough for now, I still need to prop myself up on pillows and "sleep" on left side only, and am still having reflux at night uugh!

Thanks to you I'm going to recheck my blood work ( can you believe how much bloodwork and tests we've done with this? ) to see my exact numbers for lgG for the EBV and Herpes, probably the only medical person I am "seeing" who would even be open to the numbers thing your doctor believes, is the Stanford chronic fatigue clinic, because they see a lot of LC people. If my numbers are higher than 500 I'll try to bug them about that with the info you provided. What did your doctor recommend for treatment? In Begining of May I'll be going to Rheumatologist Stanford Clinic is making me go to, but probably a waste of time. The most frustrating thing of all is the doctors are sympathetic, but they just focus on their specialty and don't communicate with one another, and are all to happy to foist you onto another specialist. My sister is at Kaiser and they really aren't any better although they communicate with one another, they still send LC people to individual specialists for symptom treatment, no real overall approach at least not yet. Why can't they catch on that something underlying is driving all these symptoms we suddenly got after covid? Before Covid I was healthy active person.

I'll look into the place you're going now, although spending even more big chunk of money is not appealing. Although IF I were SURE it would fix me, I'd be willing to pay a lot! Hope my info about Rifaximin experience and the new Elemental diet endorsed by Dr Pimentel is at least helpful for you, but hope for you and for me one round of Rifaximin will do it. Geraldine gbw on this site