Rifaximin

DebE13 · Post by **DebE13** » Tue Sep 19, 2017 7:03 pm

Anyone have any experience with Rifaximin?

I have a colonoscopy/upper endoscopy scheduled in two weeks. Not sure if the endoscopy is needed- I don't think they will find anything but understand why they are doing it. I had one in 2007 when I was first dx with MC and there were no issues. I'm on the three year plan for colonoscopies so at least it's a two for one trip.

They are running out of things to try- nothing works. Except doxcycline but that's not in their bag of tricks. I know the WD would return as soon as I stop. They'd like to try rifaximin but want to do biopsies first. The only catch is most insurance companies only cover it if there is an IBS-D dx. I have colitis so may not qualify. Yet I can poop ten times a day and be miserable. I called my insurance and they said It was on the 4th tier and covered so maybe I will be ok. It's a higher co-pay but if it works...... Is better than $1200 for a two week supply. That's just plain crazy. I was told remission can last 3-4 months then i might have to go on it again. I wish I could figure out how to control whatever is going on but am ready for some relief.

I did the U Biome test since it was free and confirmed I tested negative for the pathogens listed. That was worth giving it a try. It also listed many, many good gut bacteria that are below normal. What I do with that info, I don't know. I've taken probiotics before with no noticeable improvements. Most of what was listed can't be found in a pill anyway.

So maybe in another month I'll find out what the plan is. They thought maybe I wouldn't have the MC dx anymore but I seriously doubt it.

HockeyMom · Post by **HockeyMom** » Thu Sep 21, 2017 8:32 am

Deb-
I have no experience with this antibiotic, just remember the internal med doc asking me if I had tried it. I just briefly looked it up after reading you post earlier and it just seems to be for the IBD-D crowd. I just am leery of any antibiotics at all.

Let me know how this goes for you!!

Laine

Vanessa · Post by **Vanessa** » Thu Sep 21, 2017 8:46 am

I took it before my official diagnosis. It worked for two weeks and then back to WD.

brandy · Post by **brandy** » Thu Sep 21, 2017 4:30 pm

Keep us posted.....

DebE13 · Post by **DebE13** » Fri Sep 22, 2017 6:25 am

I don't like the idea of antibiotics either but I also don't sleep well at night because of gut rumblings. I asked if it was long term and was told it's a two week course that "re-sets" the system and can off 3-4 months of relief and then I may have to go back on it again as a repeated cycle. This really isn't the answer I'm looking for but I am ready for something other than WD. I don't buy into the theory of the antibiotic resetting my system. It seems more likely that it kills off the over abundance of bad gut bacteria which eventually repopulates once the antibiotic is discontinued. How does one change that?

It will be interesting to see if I still have the MC dx.

sunny · Post by **sunny** » Fri Sep 22, 2017 8:38 pm

Deb,
I'm sorry you are still going through all this! What a shame the "experts" aren't sure what to do...sounds like they are "practicing "medicine again!
Sunny

DebE13 · Post by **DebE13** » Sat Sep 23, 2017 6:11 am

To their credit, I've avoided them whenever possible so I haven't given them much opportunity to help. At the same time, whenever I do go for a visit it seems all the options I try make my condition worse. Hopefully, now that we've stumbled upon the antibiotic remedy we can go in a different direction. Do antibiotics generally help those with MC? I though it had the potential to cause or make things worse.

I'm used to being the odd one out at this point but cannot possibly believe I am the only one in this situation.

The nurse made a comment about my TSH levels being so low and could possibly be a contributor to my D. That was unsettling since my TSH is suppressed and exactly where my doc wants it due to the cancer history. Wouldn't that be my luck? I don't think that's totally it because the three weeks on doxcycline was great as far as Normans are concerned.

I also need to deal with the external hemorrhoids that have now become extremely painful. Hopefully they can do some banding when they do the colonoscopy but she said they can only help with the internal ones and any external issues would have to be a separate surgical procedure. Missing work right now isn't an option for me and I regularly lift 40-60 pounds all day long.

Apparently my hydrogen breath test for SIBO had high spikes in the beginning but did not qualify for an official positive result. My best alternative would be to,just stop eating.

I was intrigued with the plant based atrantil after reading success stories. It did absolutely nothing for me. Oregano oil- nope. I guess it was worth a try but is frustrating to toss money out the window. I should know better by now.....

Post by **tex** » Sat Sep 23, 2017 9:28 am

Deb,

Yes, antibiotics usually cause MC, not treat it. Cipro will stop diarrhea temporarily in almost every case. But it may also shred your Achilles tendon, cause tinnitus or peripheral neurophathy or a few other major problems I can't recall at the moment. Most other antibiotics simply trigger diarrhea, especially for MC patients.

I've been reviewing/researching this issue since it will be one of the issues discussed in my new book. Unfortunately the tetracyclines, especially doxycycline, have some of the worst drug ratings with regard to esophageal damage. They tend to contribute to GERD issues and other problems involving the esophagus. Doxycycline is notorious for causing esophagitis and ulcers in the epithelial lining of the esophagus.

Tex

DebE13 · Post by **DebE13** » Sat Sep 23, 2017 12:35 pm

That's good to know. I didn't run across that side effect. I'm sure they won't try doxy again since it's not typically used for GI issues and now I won't be as enthusiastic about it either. I've never had GERD issues and don't want to start. I knew about the cipro and have that on my reference notes of drugs to refuse if brought up. My son had a sinus infection this summer and I texted him the list of antibiotics to refuse along with their potential side effects. There was another one (forgot the name- think it was used for SIBO) that can cause hearing loss. That caught my attention- I have the gene to be predisposed to deafness and my grandmother was deaf so I wasn't sure if that could make the likelihood of having negative side effects to my hearing more likely to happen.