Xifaxan/Rifaximin antibiotic gets rid of CFS - available in the UK?

February 23, 2012

Very interesting. Especially as this lady says she never had gastro symptoms in all her 25 years of disease. …

Posted as a comment on this blog http://blogs.wsj.com/health/2012/02/23/with-help-from-author-laura-hillenbrand-drug-repurposing-comes-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 I’d like to share with you. After 25+ years of severe ME/CFS, by a fluke of fate–a miraculous accident really–I have apparently recovered from ME/CFS!

Much like the accidental discovery in Norway, I was given Xifaxan, a gastric system antibiotic that doesn’t go into the bloodstream, by my gastroenterologist to treat undiagnosed stomach symptoms. He suggested I

try it because it doesn’t 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 I’m 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 cognitive–have 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 I’d 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. http://en.wikipedia.org/wiki/Xifaxan

February 23, 2012

Just found this - looks as if it's in phase 3 clinical trials here, finishing in

2013

http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=4594

Patience

>

> Very interesting. Especially as this lady says she never had gastro symptoms

> in all her 25 years of disease. Š

>

> Posted as a comment on this blog

> http://blogs.wsj.com/health/2012/02/23/with-help-from-author-laura-hillenbra

> nd-drug-repurposing-comes-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 I¹d 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 doesn¹t go into the bloodstream, by my

> gastroenterologist to treat undiagnosed stomach symptoms. He suggested I try

> it because it doesn¹t 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 I¹m 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 I¹d 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.

>

> http://en.wikipedia.org/wiki/Xifaxan

>

February 23, 2012