Xifaxan/Rifaximim

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.

Thanks for the post Shannah. I had some trouble with the link to the comments. Here's the WSJ URL that worked for me: http://blogs.wsj.com/health/2012/02...mes-to-chronic-fatigue-syndrome/tab/comments/

This post raises the always important and often recognized but rarely acted upon issue of sub-grouping ME/CFS patients. I too have had great success with Xifaxan but in an entirely different way (all the boring details are elsewhere on PR). In summary, Xifaxan did wonders for my GI symptoms which in turn relieved significant abdominal pain which then in turn aided sleep. In ridding me of my GI symptoms I also imagine that it rid my body of a lot of toxins. However, aside from the sleep and pain (no small aside) Xifaxan did nothing for my PENE or other ME symptoms (headaches, etc.).

I agree with the commenter that ME and CFS docs owe it to their patients to try and relieve patients symptoms in supervised manner (sometimes side effects can be just as informative as the targeted response to treatment). Even if you don't have the kind of miraculous cure experienced by the woman commenting on the WSJ, I suspect that there are likely a lot of people walking around a lot sicker than they need to be given what is already available.

The description of "CFS" as a poorly defined illness with no known treatment ought to be read as an indictment of medicine rather than an accurate portrayal of what we are all experiencing. Every time I read an article that starts with this description I feel embarrassed for the author as well as for the profession of medicine.

Ironically, it was the CAA's inclusion of patients meeting only the Fukuda diagnostic criteria in their BioBank that lead me to withdraw from that project.

On another thread, Glynis pointed out that 'Esther' posted the comment on the WSJ blog which is quoted in the opening post in this thread... and esther has also posted about her experiences with Xifaxan on Phoenix Rising, as follows... Click on the link under the quote below to go the the discussion...

Corinne talks about Xifaxan on the Phoenix Rising blog as well:
http://forums.phoenixrising.me/content.php?535-Corinne-At-Dr-Peterson-6-Picking-Dr-Peterson-s-Brain!

Thanks CBS and Bob. I've attempted to correct the link.

Does anyone know what testing is used to determine SIBO? I looked in the links and didn't see anything specific to testing. But I could have missed it - not in great shape these days.

Thanks

Shannah,

The most widely available and least invasive test is the hydrogen breath test. Some highly specialized clinics also use duodenal aspirate obtained via an upper GI endoscopy (false positive due to contamination on scope insertion and removal can be a problem). I've had both. The hydrogen breath test can be used to assess the presence of SIBO as well as the effectiveness of treatment.

Studies showing that SIBO is often misdiagnosed as IBS was one of Medscape's top ten most important GI stories for 2011.

Good luck.

Hi CBS, when you sad you've had some success with rituxamab do you actually mean rifaximin? Thanks

Also when you refer to the hydrogen test for diagnosing SIBO is that the same test as when you take a fructose solution and then breathe into a bag on the hour for the next three hours? I did this to test fructose intolerance. Is this a different test? Excuse my ignorance. Many thanks

Thanks for all the feedback.

It sounds like a problem that a GP would refer you onto a GI specialist. Is this right or was anybody treated by their GP?

Anniekim - Yes, I misspoke. I was referring to Rifaxamin/Xifaxan (and I managed to do it three times! at least I was consistent).

The hydrogen breath test can be done by breathing into a bag but the testing that I did was to breath into a machine with a methane and hydrogen sensor every 15 minutes. The change over time was important. The bag will not tell you how quickly your hydrogen and methane levels rise, just the total output for the three hours. The sequential levels every 15 minutes gives a better picture of when your levels peak (given that they rise this can provide some clue as to where in the intestinal tract the SIBO has reached). The test is done using lactulose.

Thanks CBS. Consistency is good

Thanks for clarification about the test. It's different to the one I did. Does anyone know whether you can do this test in the uk and how you would go about getting it done? Would the NHS do it? Thanks

The Daily Mail carried this story recently about a bloke who was treated for SIBO on the NHS.

Dirk Budka does tests for SIBO in the UK.

http://www.ibsforum.co.uk/2/WELCOME.html

Anyone seen him?

Following a severe allergic reaction a few weeks ago I sent 4 e-mails to his office asking for an appointment - as it happens I wasn't well enough to make that 600 mile round trip but they never replied anyway, it seems that admin support varies so much in practice and has a big effect on patient's views. I wouldn't bother with him again.

The Daily Mail story left out what may be a common cause of SIBO in ME patients, enterovirus infection of the small intestine. Loss of normal motility of the small intestine is a significant contributing factor in many cases of SIBO. Enteroviruses can cause paralysis of the infected muscle tissue (Polio is an enterovirus). There is no direct treatment for enteroviruses. That is why the treatment for SIBO (Xifaxan) has to be repeated - the underlying cause is not being addressed. Drs. Chia and Montoya feel that enteroviruses are a problem in ME/CFS patients (more so than in the rest of the population) because of an underlying immune issue.

For what it's worth, I've taken both rifampin and rifaximin (for different reasons). I was prescribed a "rifaximin chaser" which consisted for 2 weeks of oral vancomycin followed by 2 weeks of rifaximin: http://www.medscape.com/viewarticle/744157 This was for C. difficile which I had for 11 long months. This therapy did cure my C. difficile.

I was recently on rifampin (300 mg bid) and 100 mg doxy bid for a chronic Cpn infection. My IgA antibody titer went from >=1:256 to <1:16. Yeah! I recently went off those antibiotics and I'm hoping the Cpn does not return.

Best, Timaca

Yes there is a hydrogen and methane test you can have. The principle has been used in research studies and you can read about it here. I did this test as part of my overall differential diagnosis. My Kaiser GI doctor said it was no good but after searching PubMed and seeing how often its used in GI research and studies, I decided he might be a bit cost biased. Check out this description:

http://www.gdx.net/core/one-page-test-descriptions/Bacterial-Overgrowth-Test-Description.pdf

I was wondering if anyone has ever obtained rifaximin from an online pharmacy. This drug seems like a no-brainer to try in my case, although I am not currently working with any doctor...

I've just bought some from www.alldaychemist.com. Fortunately they don't require a prescription. That would have been a deal breaker for me as I also don't use doctors anymore.