Xifaxan/Rifaximim

[Sickchick86]

This is posted in the comment section of Amy's latest article at WSJ.

Xifaxan is aka as Rifaximim.

I've heard of others with Lyme turning the corner on Rifampin aka Rifampicin. Does anybody know if these antibiotics are related or similar?

http://blogs.wsj.com/health/2012/02...mes-to-chronic-fatigue-syndrome/tab/comments/


12:03 pm February 23, 2012
Esther Siebert wrote :
.Dear Amy Dockser Marcus and all ME/CFS doctors and patients,

Something amazing has happened to me using a repurposed drug that Id like to share with you. After 25+ years of severe ME/CFS, by a fluke of fatea miraculous accident reallyI have apparently recovered from ME/CFS!

Much like the accidental discovery in Norway, I was given Xifaxan, a gastric system antibiotic that doesnt go into the bloodstream, by my gastroenterologist to treat undiagnosed stomach symptoms. He suggested I try it because it doesnt cause side effects and he said there was a 50-50 chance that it would create a miracle in terms of my gastrointestinal symptoms. ( Later. after more symptoms presented themselves, he diagnosed me with gastroparesis which causes overgrowth of bacteria in the stomach and small intestine. These bacteria send toxins to the brain which Im guessing cause the ME/CFS symptoms which have resolved.)

So my gastrointestinal symptoms were treated with a short course of Xifaxan (Rifaxamin). In a couple of days, my ME/CFS symptoms disappeared, only to reappear when I stopped the medicine. I used the short-term treatment dose three times, getting better each time, only to relapse when I went off of it. Though the treatment had no effect on my gastrointestinal symptoms, it unexpectedly treated my ME/CFS.

I did some research and discovered that indeed Xifaxan was used on a maintenance basis for one condition. Now I use a maintenance dose every day. And my ME/CFS symptoms both physical and cognitivehave disappeared. Some ME/CFS doctors are using Xifaxan on their patients but I believe only on a short term treatment dose. Apparently these patients are relapsing as I did before using the maintenance dose. I would love to get the word out for doctors to try the maintenance dose on these relapsing patients.

The short course treatment dose is 550 mg of Xifaxan or Rifaximin, 3X a day, for something like 10 days as I recall. The maintenance dose is 550 mg 2X a day indefinitely. Gastrointestinal symptoms were never a hallmark of my ME/CFS.

This has been an amazing experience that Id like to share with others. Perhaps what helped me will have wider applicability to other victims with gastrointestinal symptoms. I would hate to be the only one to benefit. There are so many of us suffering in desperate isolation with no hope.

I was seeking out info on connections between xifaxan and CFS. I was taking xifaxan for SIBO for about a month. It helped somewhat with SIBO but what was more interesting was the positive effect it had on my muscle aches, sinus congestion, fatigue, swollen glands etc.

since going off of it last weekend, I've been feeling progressively worse. Was very interested to hear about your taking xifaxan on "maintenance dose" with positive results and curious if you were still doing so. Would welcome any info including practitioner with who you are working. Many thanks in advance!!!!

 

[Sushi]

I was seeking out info on connections between xifaxan and CFS. I was taking xifaxan for SIBO for about a month. It helped somewhat with SIBO but what was more interesting was the positive effect it had on my muscle aches, sinus congestion, fatigue, swollen glands etc.

I've had similar results with xifaxan. My doctor used to pulse it--take it for about 8 days of the month, strong probiotics the rest of the month, then another round of xifaxan. After 3 or 4 rounds, many of the benefits "stuck."

 

[el_squared]

This is interesting! Because I was just on Xifaxan after being diagnosed through a breath test for methane dominant Sibo. I was a wreck before I began but became a lot more functional on the roughly two weeks I was on it (the brand name). My weakness and fatigue was much better, my muscle pain much better. I asked the GI doc about it and she had no idea why it would help that much. About 10 days off it I'm back to being a wreck, very weak legs and arms and in bed a lot of the time. I wish I could get ahold more more Xifaxan.

 

[Sushi]

About 10 days off it I'm back to being a wreck, very weak legs and arms and in bed a lot of the time. I wish I could get ahold more more Xifaxan.

My doc had me do about 7 days of xifaxan at the beginning of each month for 3 months. This made the effects "stick" better.

 

[el_squared]

I was seeking out info on connections between xifaxan and CFS. I was taking xifaxan for SIBO for about a month. It helped somewhat with SIBO but what was more interesting was the positive effect it had on my muscle aches, sinus congestion, fatigue, swollen glands etc.

since going off of it last weekend, I've been feeling progressively worse. Was very interested to hear about your taking xifaxan on "maintenance dose" with positive results and curious if you were still doing so. Would welcome any info including practitioner with who you are working. Many thanks in advance!!!!

I have experienced the very same thing, two times now, with the name brand Xifaxan. Feeling so much better and then crashing a few days after it being over. The GI doc has no interest in giving me more Xifaxan. Perhaps in the future when I'm retested for Sibo, but not now. Meanwhile I am bedbound. I am being seen by the Stanford CFS clinic. I suppose I could ask them, but they probably would send me back to the GI doc who does not believe Xifaxan is helping my CFS symptoms, when clearly it is. I would really really love to get Xifaxan. I'm sure that even if I got a prescription, my insurance would not cover another round, let alone continuous doses.

 

[el_squared]

Who is your doc? What kind of doc is he or she?

 

[Sickchick86]

I have experienced the very same thing, two times now, with the name brand Xifaxan. Feeling so much better and then crashing a few days after it being over. The GI doc has no interest in giving me more Xifaxan. Perhaps in the future when I'm retested for Sibo, but not now. Meanwhile I am bedbound. I am being seen by the Stanford CFS clinic. I suppose I could ask them, but they probably would send me back to the GI doc who does not believe Xifaxan is helping my CFS symptoms, when clearly it is. I would really really love to get Xifaxan. I'm sure that even if I got a prescription, my insurance would not cover another round, let alone continuous doses.

El_squared, I would encourage you to ask drs at Stanford. My immunologist was willing to prescribe more since it's been helping and just heard back from local cvs pharmacy that my insurance approved it. There is also a promotion being offered by manufacturer. I'll post a link here. Basically, if u live in US and have commercial insurance that doesn't cover xifaxan, the company has a promotion where patients will not have to pay more than $50. Coupon good for 12 refills thru end of 2016. Unfortunately doesn't work if u have Medicare/Medicaid.
--I wish places like Stanford would consider studying this!

 

[Sickchick86]

El_squared, I would encourage you to ask drs at Stanford. My immunologist was willing to prescribe more since it's been helping and just heard back from local cvs pharmacy that my insurance approved it. There is also a promotion being offered by manufacturer. I'll post a link here. Basically, if u live in US and have commercial insurance that doesn't cover xifaxan, the company has a promotion where patients will not have to pay more than $50. Coupon good for 12 refills thru end of 2016. Unfortunately doesn't work if u have Medicare/Medicaid.
--I wish places like Stanford would consider studying this!

Here is link to prescription savings card: https://www.xifaxanhe.com/he-resources/instant-savings-card

 

[Justin30]

Just wanted to point out that Ian Lipkin, KDM, OMI, Simmaron, Chenney and othes have all mentioned the "Gut" as being major area treatment and research.

60 to 70% of immune cells reside in the Gut.

This is a Neuro-immune Disease.

Everyone that seems to get better from this illness like the guy from standford who has a self help program did worked on the guy bug time.

Most FMDs and NDs believe this is the route to all problems. To add to this TCM and Dr Chia's Equilibrant and Oxymatrine were developed beause or biopsied viruses in the GI track.

Further study needs to be done but something is pointing this way.

I hope you get more of this antibiotic if it helps...Dr are so aggrevating some will and want to help and others their egos are so big, even with a sledge hammer and a stake you couldnt pop their bubble.

 

[Angela828]

Newbie here - I've been suffering from CF for over 10 years and in the last 9 months I have been completely housebound. I was just RX'd Rifaximim after an Organic Acids test showed significant bacterial overgrowth in my small intestine. I am starting with a glutathione supplement to aid with detoxification and will start on the Rifax in 2 weeks. I will check back and let you know of my progress on it.

 

[JCamp]

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!

 

[Justin30]

This is so strange my Dr also talked about a severely ill young girl that had been bedridden for over 3 years.

This my GP not ME Dr.

After Xifaxan she was able to move again prior granted she could only move in her bed. It was a huge improvement for her.

I Love hearing all this good news....its like the rifaxamin is clearing out the toxin sludge. Im going to look into some other affects of the drug.

 

[shannah]

Some amazing results - albeit some seem short term.

Any of the online places I've investigated have been unreasonably expensive. Any one know of a place this can be obtained reasonably?

 

[AlmostEasy]

Some amazing results - albeit some seem short term.

Any of the online places I've investigated have been unreasonably expensive. Any one know of a place this can be obtained reasonably?

I am extremely interested as well. There was a study demonstrating 2 herbal concoctions that were just as powerful if not more for treating SIBO directly compared to Xifaxan, sourcing these or at least finding out what is in them might be a preferred alternative:

http://www.cortjohnson.org/blog/201...proach-small-intestinal-bacterial-overgrowth/

I'm having highly unexpected success with Digest Gold digestive enzymes. I tried them on a whim without having really any direct signs of GI distress or IBS like symptoms. But maybe like @JCamp those don't need to be present for it to wreak havoc elsewhere.

@JCamp are things still going well? Any return of symptoms?

 

[Sushi]

Any of the online places I've investigated have been unreasonably expensive. Any one know of a place this can be obtained reasonably?

I have gotten it at Canada Pharmacy. I just checked the price and it has gone up but is still not too bad: 96, 200 mg tablets for $182.

 

[shannah]

WOW @Sushi - everywhere I've been checking it's been over $1000.00.

Having trouble getting on their site at the moment but I'll definitely check this one out further! Thanks so much. Do you need a prescription at this one?

 

[Sushi]

Having trouble getting on their site at the moment but I'll definitely check this one out further! Thanks so much. Do you need a prescription at this one?

I think you have to be in the US to order from them--kind of ironic if you are Canadian!

 

[shannah]

I think you have to be in the US to order from them--kind of ironic if you are Canadian!

Ah, I knew it was too good to apply here. That has always bewildered me how they will sell to others cheaply - but not their own!

 

[JCamp]

I am extremely interested as well. There was a study demonstrating 2 herbal concoctions that were just as powerful if not more for treating SIBO directly compared to Xifaxan, sourcing these or at least finding out what is in them might be a preferred alternative:

http://www.cortjohnson.org/blog/201...proach-small-intestinal-bacterial-overgrowth/

I'm having highly unexpected success with Digest Gold digestive enzymes. I tried them on a whim without having really any direct signs of GI distress or IBS like symptoms. But maybe like @JCamp those don't need to be present for it to wreak havoc elsewhere.

@JCamp are things still going well? Any return of symptoms?

Yes, all of my symptoms returned towards the end of my two week course. I'm in the midst of trying to figure out what happened. It was too drastic of a change to have not been related in some way. It could possibly have been driven by the mitochondria supplements I was taking as well, but I'd been on those a couple of weeks already before I started xifaxan. I'll let you guys know if I figure it out. It's heartbreaking to swing like that but it gives me hope that my body is capable of producing somewhat normal energy levels. It's just feeling impossible to know what's in the way.

 

[AlmostEasy]

Yes, all of my symptoms returned towards the end of my two week course. I'm in the midst of trying to figure out what happened. It was too drastic of a change to have not been related in some way. It could possibly have been driven by the mitochondria supplements I was taking as well, but I'd been on those a couple of weeks already before I started xifaxan. I'll let you guys know if I figure it out. It's heartbreaking to swing like that but it gives me hope that my body is capable of producing somewhat normal energy levels. It's just feeling impossible to know what's in the way.

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.