Xifaxan/Rifaximim

[el_squared]

Hi, everyone. Another positive story here. I've had severe CFS for nearly seven years, bedridden and relying on cargivers for the past two years. I started xifaxan five days ago and I already have a 50-60% (maybe more!) reduction in all symptoms. Fatigue, brain fog, pots, endurance, etc ALL IMPROVING. And here is the major kicker -- I had NO gastrointestinal symptoms prior to taking xifaxan. My doc just gave it to me on a whim and I begrudgingly took it thinking it can't hurt to try -- but not really believing it would help since I have a near perfect diet and never had any bloating, cramping, stool problems, etc. I was certain that it was centered in the brain as a neurological disease and have focused primarily on mold treatments, methylation, and brain retraining with spotty results at best. Its been nothing short of amazing and I hope it sticks! Best of luck to anyone thinking of giving xifaxan a try.

I'd love to hear from others who have benefitted from xifaxan on what helped them sustain benefits-- did you go low fodmap? Does l glutamine help?

I'm walking, talking, reading, and looking forward to building strength!

Hi, Are you still on the Xifaxan? I'm wondering if the benefits have continued if you are off it? I pretty quickly returned to being sick after finishing the two-week round.

 

[Sushi]

I know @Sushi does some pulsing every month where he takes a week or two's worth and then stops until the next month to help maintain the effects.

I only did this for 4 months. Then it seemed to "hold," for some years. Now my doctor wants me to do another pulsing.

 

[justy]

I am pulsing one week on, one week off for three months 600mg once a day. I got mine from inhousepharmacy - Rcifax - Indian generic brand.

I haven't noticed any major improvements from it at all, have done 3 weeks off it so far with the weeks breaks in-between. It may have helped brain fog a little, but that is all. I have had side effects - mainly stomach pain in the beginning that has now settled.

I have noticed though that my joint pain has been much worse - especially at night or on waking - hands, shoulders knees, ankles and toes. Also have had a lot more foot heel pain, which had gone away. I know this drug is related to Rifampicin, which is good fr Bart, and I have Bart on testing so wonder if it stirring up the Bart/Lyme in some way?

I am also in a flare of terrible undiagnosed rectal pain - but this predates the rifaximin by a couple of years so I don't think its related.

 

[JCamp]

I think from other posters experience it's pretty clear what is going on. Basically all of them saw the same thing and had to employ a different strategy to help maintain, I'm not sure on the exact details but I know @Sushi does some pulsing every month where he takes a week or two's worth and then stops until the next month to help maintain the effects.

In this amazing recovery story a lady completely recovered from her debilitating issues with Xifaxan and now takes it chronically:

http://www.cortjohnson.org/blog/2014/06/06/gut-brain-esthers-chronic-fatigue-syndrome-xifaxin-story/

I think you're just in the very beginning of things here, it doesn't seem to simply be a take it for two weeks and the bacteria are gone type of thing. I would keep pushing in that direction and perhaps show your Dr some of the evidence out there and what others are doing to maintain the results and why. It might take some combined efforts to eliminate it permanently. This issue has BARELY even begun to be flushed out. Who knows what it might take. I know metronidazole (Flagyl) is used for gut bugs as well, maybe the two combined would assist? Along with some probiotics and perhaps digestive enzymes.

How long did it take for you to notice the positive results? I'd like to do a trial run if I can get my hands on some.

I've also read all of the recovery stories online. What makes my trial of xifaxan different from others here is that my benefits were seen within a few days of taking it but went away while I was still on it. I continued for ten days with no benefit whatsoever. So I don't think shelling out money for another trial or pulse is a good investment for me.

 

[shannah]

Here's an interesting interview from September 2015 with Dr. Mark Pimentel, Associate Professor of Medicine at Cedars Sinai Medical Center in LA and considered to be a SIBO specialist talking about relapse rates.

"I see about 70% of patients with IBS or SIBO — however you want to frame it — but definitely with the breath test, more than 70% respond to rifaximin. What we then are looking at is relapses, and I think for sure I’m seeing about a third of patients that I don’t see them for months and months and months, and they never have a relapse, maybe more than a third. But then the rest of them, they will have relapses. And it depends. Some of them relapse in six months, some of them relapse in three months, and some of them relapse in a week, and those are the tougher cases."

Lots more

https://chriskresser.com/sibo-update-an-interview-with-dr-mark-pimentel/

 

[Crux]

I'm taking rifaximin in combination with other abx.

It only works against certain bacteria, like other abx. It only inhibits growth, so sometimes certain bacteria will regrow later.

I like it because it prevents the diahrrea that the other abx. cause.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4467648/

 

[shannah]

I am pulsing one week on, one week off for three months 600mg once a day. I got mine from inhousepharmacy - Rcifax - Indian generic brand.

Thanks for posting the pharmacy @justy !

 

[shannah]

I am pulsing one week on, one week off for three months 600mg once a day. I got mine from inhousepharmacy - Rcifax - Indian generic brand.

Unfortunately, another one that can't ship to Canada!

 

[AlmostEasy]

I've also read all of the recovery stories online. What makes my trial of xifaxan different from others here is that my benefits were seen within a few days of taking it but went away while I was still on it. I continued for ten days with no benefit whatsoever. So I don't think shelling out money for another trial or pulse is a good investment for me.

Hmm, that is a bit of an outlier. Maybe it just wasn't enough? I read from the link posted above that it is sometimes combined with metronidazole or neomycin.

https://chriskresser.com/sibo-update-an-interview-with-dr-mark-pimentel/

It's frustrating having so little information about these exciting but totally unknown treatments.

 

[JCamp]

Hmm, that is a bit of an outlier. Maybe it just wasn't enough? I read from the link posted above that it is sometimes combined with metronidazole or neomycin.

https://chriskresser.com/sibo-update-an-interview-with-dr-mark-pimentel/

It's frustrating having so little information about these exciting but totally unknown treatments.

Thanks for the suggestion. I'll look into it. It's hard for me to justify putting more meds in my gut when I just don't have any gut symptoms. I will definitely keep those here posted if I find any other nuggets of promise.

 

[AlmostEasy]

Thanks for the suggestion. I'll look into it. It's hard for me to justify putting more meds in my gut when I just don't have any gut symptoms. I will definitely keep those here posted if I find any other nuggets of promise.

I'm in the same boat. There's so much unknown, such a large spectrum of symptoms, so much crossover, poor testing. I'm very hesitant to mess with the gut fearing near permanent disruption. I think I'll have to risk it eventually. I've always been resilient and never succumbed to much sickness, I used to be pretty cocky about "never getting sick" before this all started. I feel like maybe that handles some of the symptoms more obvious to others. This also gives me more encouragement:

http://forums.phoenixrising.me/index.php?threads/how-i-recovered-from-chronic-fatigue.41749/

How random is that? How long could he have gone without EVER trying that? The devil is certainly in the details with ME/CFS.

I'm also looking for details on how to preserve the gut during anti-biotic rounds. I know taking a probiotic during / after is a good idea, and probably digestive enzymes. I don't know what level of certainty that gives for retaining normalcy. I've also heard of anti-fungals alongside antibiotics to prevent any candida overgrowth.

I'll stop side-tracking the thread, just throwing a few things out there that caught my attention!

 

[ErdemX]

After reading all this thread I decided to give Rifaximin a try. Here in Turkey its very cheap, 3.5 dollars a box and I was able to get it from the pharmacy without a prescription.

I have very high ammonia and this drug also lovers it, so I might get some benefit from it.

I will be using it 600mg x 3 times a day for 10 days.

After that I will let you know if it makes a difference.

 

[jump44]

Thought I would add another experience on xifaxin. I won't go into all my symptoms cuz they are too numerous to even try but I have deactivated ebv, low nk cell function, thyroid problems, erectile dys, etc etc etc. anyways I am on Ldn and imunobir for the past 6 months. I took a 2 week course of dogs in in November and experienced a nice improvement, which stuck for about a month.

Since then I've been going slowly downhill and mostly in brain function. It's like my brains on fire and it effects my whole body. I do get twitches in my stomach and legs quite often when it's very bad. Anyways last night I was trying to sleep feeling like I had been poisoned, I'm sure some of you can relate.anyways it turns out that I had a few xifaxin tabs left over from my previous course, and in desperation I popped on last night.

Well, I awoke somewhat clear headed and had two of the more healthy bowel movements I've had in months.(sorry lol). But anyways i thought I'd share as my experience w this antibiotic mirrors many in this thread. I plan to call my cfs dr and ask about maybe getting on a maintenance dose. It seems that I was attributing my improvements back in November-December to other things but in fact may have been the xifaxin all along. I hope those of you who have found relief w this med can and are able to continue on it.. It helps in a major way.

 

[ErdemX]

I've completed my Rifaximin trial 10 days, 600mg x 3 times a day.

Unfortunately I had no benefit and no noticeable side effect (some minor gut discomfort). I'm not any better or worse after one week of the treatment.

 

[antares4141]

I probably took xifaxen 2 years ago. First antibiotics in over 20 years. Been cfs for just about 20. It didn't seem to help but interestingly I started having anxiety and other brain related issues. I only had a 10 day course.

Than I got an abscessed tooth about 5 months later and took cephalexin. Reacted pretty poorly to it initially, stomach felt like it was plugged and nothing would pass through. After being bedridden for close to 20 hours I puked and started to get better. This was probably after 8 hours or so of being off the abx.

Than three days later tried again and got markedly better. Was able to function at a level I hadn't seen in years. I managed to get a refill not with the cephalexen but amoxicilian at 10 days in and kept that up for another 20. Gradually relapsing back to my original state.

Did something similar to this again maybe 6 months later and experienced about the same results. Marked improvement at first and slowly relapsing. No bad reaction to the abx though. Like if I built up a tolerance to them.

I don't know weather I am sold on the xifaxen cause it isn't supposed to work anywhere other than the gastro tract. My thinking being if leaky gut is a major cause of my fatigue that there won't be any benefit from this type of abx. Unless maybe that it leaks out also?

Based on my experience and the logic mentioned above I am inclined to believe I am better off with the systemic abx that act outside of the gut.

Unless I get markedly worse than I am now I'm probably going to steer clear of abx cause they don't seem to offer any long term effectiveness as far as my cfs symptoms go.

 

[NatBard]

Thanks for posting the pharmacy @justy !

Hi there, can I ask where abouts people got their Neomycin from? My GP won't prescribe it to me and after 2 years of antimicrobial herbs I think I need to take a new tactic to treat this SIBO once and for all!

Many thanks!

 

[Horizon]

I took it for 2 weeks without benefits. Are the people who it's working for taking it longer?

 

[NatBard]

I'm just going by the studies I've read via Chris Kresser and in particular his interview with Mark Pimentel. I hate antibiotics so its very much going against the grain with me but I've been wanting to do GAPS, and been following the plan since mid August of this year and still having a histamine problem so I know the SIBO is still there and causing problems. There's no way I could have stock that's cooked for more than 3 hours or eat anything with Pork and some days Aubergine is a real problem! I don't mind living off soup but I know its not recommended for extended periods of time so my healing is getting delayed by this mean SIBO! Until I get it sorted my digestive tract can't heal and I won't reach the level of health that I do dearly wish to have and strive for. Giving up Chocolate has been incredibly hard, but that's ok, as long as I can move forward and gradually get better!

So did your doctor prescribe you the Neomycin Horizon? I've seen the validity of Dr Pimentel's approach from that Kresser interview. Its made me realize that by living on a low FODMAPS diet along with GAPS I have been starving all the bacteria in my Gut and so the mean ones have been withdrawing and hiding out waiting for conditions to improve before they replicate and proliferate. Meant my symptoms were more manageable - could have baths again, slept a little better sometimes (not that often!!) but that meant the bacteria were still there. Dr Pimentel was saying we need happy feeding bacteria in order to kill them with the antibiotics so I think that's key in anyones treatment protocol. Up till now I've been using a wide range from Lauricidin, Oregano oil, GI Microbx, Olive leaf extract, Cats claw, Pau d'arco etc......... Also trying out the Prokinetics now too - lots of ginger tea and now Iberogast and jumping up and down on my rebounder (when I have the energy!) seems to help bring on the die off feeling more so gotta hope that its doing some good. Full on diarrhoea as a result but I'm hoping better out than in - sorry! Bleurrrrgh!

;0)

Am still wanting to give the Rifaxamin and Neomycin combo a go though. 45% success rate individually but 87% when taken together! Need to find a way of getting some Neomycin. If anyone can help I'd be really grateful!!

 

[Horizon]

I'm just going by the studies I've read via Chris Kresser and in particular his interview with Mark Pimentel. I hate antibiotics so its very much going against the grain with me but I've been wanting to do GAPS, and been following the plan since mid August of this year and still having a histamine problem so I know the SIBO is still there and causing problems. There's no way I could have stock that's cooked for more than 3 hours or eat anything with Pork and some days Aubergine is a real problem! I don't mind living off soup but I know its not recommended for extended periods of time so my healing is getting delayed by this mean SIBO! Until I get it sorted my digestive tract can't heal and I won't reach the level of health that I do dearly wish to have and strive for. Giving up Chocolate has been incredibly hard, but that's ok, as long as I can move forward and gradually get better!

So did your doctor prescribe you the Neomycin Horizon? I've seen the validity of Dr Pimentel's approach from that Kresser interview. Its made me realize that by living on a low FODMAPS diet along with GAPS I have been starving all the bacteria in my Gut and so the mean ones have been withdrawing and hiding out waiting for conditions to improve before they replicate and proliferate. Meant my symptoms were more manageable - could have baths again, slept a little better sometimes (not that often!!) but that meant the bacteria were still there. Dr Pimentel was saying we need happy feeding bacteria in order to kill them with the antibiotics so I think that's key in anyones treatment protocol. Up till now I've been using a wide range from Lauricidin, Oregano oil, GI Microbx, Olive leaf extract, Cats claw, Pau d'arco etc......... Also trying out the Prokinetics now too - lots of ginger tea and now Iberogast and jumping up and down on my rebounder (when I have the energy!) seems to help bring on the die off feeling more so gotta hope that its doing some good. Full on diarrhoea as a result but I'm hoping better out than in - sorry! Bleurrrrgh!

;0)

Am still wanting to give the Rifaxamin and Neomycin combo a go though. 45% success rate individually but 87% when taken together! Need to find a way of getting some Neomycin. If anyone can help I'd be really grateful!!

I have not heard of Neomycin. I was given Xifaxin for SIBO but am more interested in the ability to help my CFS. Where are you finding the 87% combo success rate? How long were patients on Xifaxin and Neomycin for that high percentage of success? I dont think my Dr will give me more than 2 weeks worth.

 

[Eastman]

... Where are you finding the 87% combo success rate? How long were patients on Xifaxin and Neomycin for that high percentage of success?

I assume she was referring to this study.

A combination of rifaximin and neomycin is most effective in treating irritable bowel syndrome patients with methane on lactulose breath test.