Sustained improvement on maintenance xifaxan!
Hi everyone,
I'm writing to report on my wonderful improvement from Xifaxin! I was given it about four months ago by my gastro as a last ditch effort to address gastro symptoms after he was unable to definitively diagnose me. He said he'd like me to try it and there was a fifty percent chance it would do nothing and a fifty percent chance it would miraculously cure my gastro symptoms. He was willing to try it because there were no side effects he was worried about with this drug.
Within a couple of days, my ME/CFS symptoms went away. But once I went off of it, they returned. We tried a short course a couple of more times and the same thing happened. After looking up its use as a maintenance drug and finding it was being used as such for another condition, I asked with some trepidation about the answer to be put on it continually. He agreed as did by ME/CFS doctor! My insurance is paying for it but I still have some apprehension they could challenge it when I renew for another 90 days. I have two doctors to go to bat for me though but I hope that won't even be necessary.
My improvements have been both physically and cognitively. I have no flu-like aching, no total exhaustion requiring bed rest, an amazing improvement in my energy and an improvement in my cognitive abilities. My husband and I have been amazed! However, my ME/CFS doctor cautioned me to not get too excited which I was for awhile and to not push too hard because people relapse. He also asked me to email him once a week updating him on my condition. I can't help but wonder if the people who improved on xifaxan and then got worse were on short courses of the drug which are most commonly given, not on a maintenance dose. The short course dose is 650 mg 3X a day for a week or ten days. The maintenance dose I'm on is the same strength but only 2X day. I'd love to hear of others' experiences in regard to xifaxan. Is there anyone else out there on a maintenance dose?
I was eventually diagnosed with gastroparesis which impairs food being sent properly and quickly from the stomach to the small intestines and below, causing an overgrowth of bacteria in the upper intestines and stomach as food rots in the stomach and small intestine. This overgrowth of bacteria sends toxins to the brain causing, apparently, a lot of the cognitive symptoms which have now been relieved. It is important to note that gastroparesis is often associated with nerve damage caused by diabetes but is also caused by other things as well. (You might want to google it to see if your gastro symptoms match up to those caused by gastroparesis as a first step.)
Now I can get tired but it doesn't make me feel sick. I've had to relearn what normal fatigue feels like and I've had to learn a whole new way of pacing myself accordingly. I was 39 when I first got ME/CFS and am now almost 65, completely deconditioned and obese. I've begun to do Sit and Be Fit exercise for seniors using slow and gentle movements to tone and stretch. My new found ability to shop and do things around the house as well as going out with my husband for fun is my aerobic exercise. Now that I can recognize normal fatigue, I rest when I feel the need to and take it easy if I haven't slept well. But even on these days, I can putter around the house, work on the computer and take care of calls etc. I do find that when I haven't slept well and feel sleepy, my mind is tired too and there is a drop in cognitive skills. I'm working on my cognitive skills when I'm feeling well and was pleased to discover that I could remember things like numbers so my short term memory is better!
Basically, I don't feel sick even when tired but I'm not pushing my luck and continue being prudent about my activities. I don't know if this will last, but I'll take what I can get! It would be very hard to go back to being so sick as I'm sure you all understand.
I hope that my experience and xifaxan will benefit many more people with ME/CFS! We need to keep up our hope which by itself makes us feel better! All the best, Esther