Hi Canadian Guy
I like you have spent years researching, spending tons of money and trying various therapies and meds to little avail. You are brave wantng to try the Rifaximin - my specialist says I wouldn't tolerate the long term ABX one needs to crush SIBO and it seems from other reviews that it does come back otherwise.
I've tried so hard to adopt a suitable diet ,supplements, relax, regime but the extreme pain I get is like yours and often at night so that my sleep pattern is now very disrupted aggravating pain and causing susceptibility to viruses. I take a whole lot of meds which I never did in my younger days (now 66) have always used alternatives and still do try herbs caffeine free teas, hypnotherapy and aromatherapy.
I keep to gluten free diet but much of the FODMAPS style does not suit me - can't tolerate green veg; only fruit I eat is avocado and banana sometimes stewed apple, blueberries and some of these are not recommended iin Large doses.
I'm 5ft 3 and weigh only 80lbs now!!
We have access to the hydrogen br test in our hospitals but it's too exhausting for me at the moment - takes 3hrs and is not that reliable i'm told.
Take care and let me know your thoughts and how you get on with the med.
Up until right after I had tried the rifaximin course, the multiple doctors I had seen were basically looking at me like they couldn't figure it out or understand why I was in pain at all. It also seemed like they suspected I was manifesting it psychologically through anxiety, but a few seemed to be able to respect what I was saying when I told them that the pain precedes the anxiety and not the other way around. I think they really just didn't understand how much pain I was in on an ongoing basis either, not to mention understanding these extreme attacks that I would get that would put me on the floor writhing in pain. In the last year a lot has changed though and now doctors are treating me seriously. Now that GI doctors have confirmed eosinophilic esophagitis a year after it was initially suspected (a condition where the the immune system attacks the esophagus and causes the muscles to tighten up without the usual ulceration type damage of acid reflux) they are finally treating me like I have something that they want to aggressively treat and I'm hoping that treating this specific condition will unwind the symptoms I have in the rest of my GI tract as well.
The reason I went on Rifaximin in the first place is because I had read about Dr Hyman, an MD practicing functional medicine out of the USA, using it as a part of an holistic IBS treatment protocol. The approach of the protocol seemed a lot more comprehensive than the standard narrow focused diagnostic tests I had tried, so I thought it would be worth following all of the steps and found a doctor who respects the functional medicine approach.
The protocol involved allergy testing, stool testing, testing for nutritional deficiencies as well as a comprehensive blood work profile looking at all of the different systems of the body. Ultimately most of those tests came back clear for me. The only red flags I had were low testosterone, which doctors suspect is from experiencing chronic pain, which reduces a hormone that signals production of testosterone. They also noted osteopenia, lowered bone density due to PPIs that I had been on for years beginning in high school followed by the addition of anti-epileptic medications for 4 years following 2007. Lastly, and in addition to the usual suspect of low vitamin D levels, I also had a big sign to these functional medicine type doctor, I also had impaired glucose tolerance on a 2-hr glucose test. Interestingly enough, low testosterone, low bone density and impaired glucose tolerance are all related somehow as well.
As for gastrointestinal tests for the most part they always came back clear. Scopes ALWAYS showed mild clinically insignificant diffuse chromic inflammation, whether it was in the colon, the stomach, duodenum, or esophagus, and doctors never thought of that as a red flag. I mean it's probably a lot less to worry about than the people they see with actual ulcers, diverticulitis, strictures, polyps and growths, but I always thought that this mild chronic inflammation must somehow be connected to what I've experienced. Stool testing from Genova Diagnostics only showed extremely low stool butyrate and SCFA levels, probably from avoiding dietary fiber and most fibrous foods for so long to avoid flaring up my symptoms or causing any amount of bloating which would make it worse for me. Turns out cutting out fibers that feed SCFA and butyrate producing gut bacteria ends up making the whole situation worse because the health of the lining of the GI tract relies on butyrate to stay healthy.
The biggest shocker was finding out I might have had eosinophilic esophagitis in 2013, which has turned into a year long wild goose chase where I did allergy testing which came back clear. The GI who did the upper GI scope at first wasn't sure I had EoE (the acronym for it) because I didn't have much sign of it other than a high eosinophil count of 60 per high powered field on the tissue biopsy. So they never ended up treating me with that other than with a short course of PPI drugs which didnt help my symptoms. So that appeared to be a dead end. It turns out that I had another follow up scope with a different gastroenterologist that I was set up with after an ER visit this past summer (during an attack of pain). On the scope this fall they found rough texture to my esophagus lining was clearly visible in my esophagus as well as the high eosinophil count again in biopsy. They said without a doubt I have this eosinophilic condition. This is something that I can tell these doctors are less familiar with. They've even told me that it's a newly emerging condition.
I only did one course of Rifaximin earlier this year prior to that last scope with an anti-fungal drug. If it had any effect at all, it was mostly reducing bloating that soon followed meals with certain types of sugars, raisins, grapes or other foods that I couldnt usually tolerate without getting bloating and cramping within a few hours after eating them. My diet has become so severely restricted over the last year that it didnt matter anyway because I pretty much knew to avoid anything that would cause me the slightest bit of bloating and increase the chances of triggering an attack.
So rifaximin helped with bloating only if anything, but it didnt solve the problem I've had of stomach attack upper left quadrant abdominal pain attacks (which I've been told are not unlike severe gallbladder attacks, though mine are in a different area). Afterwards, my entire belly also still felt knotted up and crampy all the time still as well. This new gastroenterologist basically said to me that he can't be sure that EoE is causing all of my abdominal symptoms, but EoE has been known to cause referred pain that make it hard to pin down. Basically they said that they want to try treating me with a swallowable steroid inhaler (flovent swallowed instead of inhaled) to see if it reduces the EoE in the esophagus, and then perhaps that relaxing will also somehow cause the rest of my GI tract to relax too, if the esophagus being out of whack is what's setting my entire GI tract off somehow. 6 week course of this corticosteroid to reduce it and a follow up scope to see if it made a positive impact and check at that time to see if my bowels are better. If that doesn't work they want to try treating me with prednisone which will extend throughout the body, sort of like a bigger hammer version of the same approach.
Ultimately I know that once I can tolerate it again, I need to also start adding back in fibres and probiotics to rebuild the flora that create butyrate and other short-chain-fatty-acids.
In the meantime they've also got me on vitamin D and testosterone replacement to slow down weight loss and hopefully improve bone density and blood sugar management. A doctor also put me on low-dose-naltrexone just in-case what I'm dealing with works similarly to the other auto-immune conditions which LDN has been able to help people out with.
All of this has just made me realize how complicated our bodies are and how science is just really only beginning to grasp the complexities for many conditions, even though they seem to know so much about so many other conditions. People with obscure hard to diagnose GI problems are basically left to do what I have done, which is wander around looking for answers anywhere I can get them, otherwise what other choice do we have? Sit in a room and whither away while putting up with pain and symptoms that hold us back from living full and healthy lives? Im going to keep pressing forward until I figure things out for myself. I don't feel like I really have any other choice.
I mean who knows what effect rifaximin really has on the ecology of the gut. Maybe it just messes it up even more at the expense of reducing symptoms. I don't think the science really exists at this point to say for sure. I dont think the science exists to really say for sure that we know what any of the chemicals, pesticides and antibiotics in foods are doing to our bodies or immune systems either. So in closing I think at this point we're just forced to keep trying out anything we can find so we can get past our individual problems and get on with our lives. I'd say go for it because rifaximin has apparently worked like a charm for so many who merely had SIBO. If that's what you have then its worth trying. If it doesn't work then you know you'd need to look elsewhere.