Anyone tried Xifaxan (Rifaximin) for SIBO?

crypt0cu1t

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Hello.

My gastro doc tested me for SIBO and prescribed Xifaxan (Rifaximin) with 2 refills. My insurance will have to investigate whether to cover it, and if they do my copay for one round will be $560. I really can't afford it but am willing to try it one time, but would be unable to continue. I have asked if she would be willing to try Flagyl (metronidazole) instead and am waiting to hear back from her.
I've read encouraging stories about Xifaxan for both SIBO and ME/CFS. This woman's story was nearly identical to mine: Health Rising: Esther's Xifaxan Story

UPDATE: My dr is sending a prescription to use at a Canadian pharmacy for a fraction of the cost. :)
I used both before and never noticed any benefit from Xifaxan. Flagyl on the other hand... That was terrible for me and flared me terribly.
 

EddieB

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This is not my thread, so please forgive me, but I’d like to make a suggestion...

Could those posting please state whether or not they were diagnosed with SIBO, from breath test or symptoms,
and if known, what type (hydrogen/ methane)? And how long did you the take the medications? It would help to see if we can piece together a pattern of successes and failures.

For example, I was given xifaxan for one week years ago by a gastrologist on a guess of sibo. It made me terribly ill, worsening all symptoms. There was no benefit. Later was told that I didn’t take it long enough. Not knowing what type I may have, I made myself very sick for nothing.

Breath tests aren’t perfect either, in some cases it may be necessary to treat by symptoms. But in my case, my symptoms match more with methane, so xifaxan alone is probably a dud.

It is reported that xifaxan alone is about 50% effective on hydrogen SIBO, but a xifaxan/ neomycin combo is 85% effective on methane SIBO.

I've read very few cases where script meds alone were effective for long term treatment. Herbs and supplements like neem, Berberine, and allicin are needed.

I’ve posted this elsewhere, but if you haven’t already seen it take a look...
https://chriskresser.com/an-update-on-sibo-research-with-dr-mark-pimentel/
There’s a third SIBO type, hydrogen sulfide, that has turned up. It’s more difficult to treat, but apparently bismuth is used.

There is an additional test, that looks at food poisoning antibodies. Again, I’ve posted this elsewhere, but if you have or suspect SIBO with IBS-D, might be something to look into...
https://www.ibssmart.com/
I just did one, came back negative.

In Esther’s case, the xifaxan worked wonders, but there are additional things that could be helpful long term.
 
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2Cor.12:19

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This is not my thread, so please forgive me, but I’d like to make a suggestion...

Could those posting please state whether or not they were diagnosed with SIBO, from breath test or symptoms,
and if known, what type (hydrogen/ methane)? And how long did you the take the medications? It would help to see if we can piece together a pattern of successes and failures.
.
@EddieB I'm so glad you posted this because I was thinking the same thing. It would be helpful to know if those who've tried Xifaxan had breath tests confirming SIBO. And also if they've tried other approaches along with the antibiotics eg; FODMAP, Elemental Diets, etc. My doc wants me to try FODMAP along with the Xifaxin. I'm hoping between the two I can get off the Nexium.
 
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I had a terrible experience with Rifaximin. I took it for suspected SIBO (couldn't get the breath test due to insurance) and after a couple of days I started having diarrhea, nausea and anxiety. This was in 2013 when I was newer to CFS and didn't know as much as I do now, so believing that my reaction was a Herx or die-off, I soldiered through and completed the cycle which was 10 days I believe. Now I know that was a terrible idea. The result from the Rifaximin treatment was that I developed terrible IBS-D which was triggered by almost any food. When I tried taking probiotics and gut repairing supplements it made it worse. Anything with histamine triggered diarrhea. Anything dairy triggered diarrhea (I never had issue with dairy before), anything spicy triggered diarrhea. Ginger ale trigger diarrhea. Kombucha triggered diarrhea. I was also diagnosed with lactose intolerance with a breath test. So I was having diarrhea daily, nausea daily, couldn't eat anything and I started having horrible panic attacks almost every night. It was hell.

This whole mess took 2 years to fix and a lot of expensive supplements. But even now after 8 years I still occasionally get diarrhea a few times a month, and a panic attack once in a blue moon. At least I can eat whatever I want including dairy since the lactose intolerance disappeared after a long treatment with Mutaflor. I still can't eat spicy foods. So now I'm 90% back to baseline I'd say.

The bottom line is: I would personally stay the F away from Rifaximin. If you do have a legitimate SIBO diagnosis with breath test and want to try Rifaximin to see if it fixes it, be very very careful! If your symptoms get worse, or if you get new symptoms STOP THE RIFAXIMIN! Don't make the same mistake I did.
 

2Cor.12:19

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I had a terrible experience with Rifaximin. I took it for suspected SIBO (couldn't get the breath test due to insurance) and after a couple of days I started having diarrhea, nausea and anxiety. This was in 2013 when I was newer to CFS and didn't know as much as I do now, so believing that my reaction was a Herx or die-off, I soldiered through and completed the cycle which was 10 days I believe. Now I know that was a terrible idea. The result from the Rifaximin treatment was that I developed terrible IBS-D which was triggered by almost any food. When I tried taking probiotics and gut repairing supplements it made it worse. Anything with histamine triggered diarrhea. Anything dairy triggered diarrhea (I never had issue with dairy before), anything spicy triggered diarrhea. Ginger ale trigger diarrhea. Kombucha triggered diarrhea. I was also diagnosed with lactose intolerance with a breath test. So I was having diarrhea daily, nausea daily, couldn't eat anything and I started having horrible panic attacks almost every night. It was hell.

This whole mess took 2 years to fix and a lot of expensive supplements. But even now after 8 years I still occasionally get diarrhea a few times a month, and a panic attack once in a blue moon. At least I can eat whatever I want including dairy since the lactose intolerance disappeared after a long treatment with Mutaflor. I still can't eat spicy foods. So now I'm 90% back to baseline I'd say.

The bottom line is: I would personally stay the F away from Rifaximin. If you do have a legitimate SIBO diagnosis with breath test and want to try Rifaximin to see if it fixes it, be very very careful! If your symptoms get worse, or if you get new symptoms STOP THE RIFAXIMIN! Don't make the same mistake I did.
@enduin Thanks for sharing your story. Wow! That’s awful what happened to you. I did test positive for SIBO via breath tests and have severe gut motility issues which combined with SIBO have caused many other problems. Seeing’s how it’s imperative that I get the SIBO under control ASAP, I’m going to go ahead with the Rifaximn when it arrives and pray I don’t have any serious problems with it. My gastroenterologist’s group has treated many SIBO cases with it. They’re pretty cautious about side effects and refused to prescribe neomycin to go with it. So that gives me a bit of comfort. Every one responds differently though. Fingers crossed.
 

EddieB

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Any updates on how you’re doing with treatment?

I did the home breath test yesterday. Just doing the 12 hour prep diet set everything off, who knows why.
As expected, the glucose drink really added to the party. Sick all day yesterday.

Then last night, 2am, stabbing pain in the lower gut, gas, dizziness, uncontrollably moving arms/ legs.
Has subsided some now, just feel sick.

Whether the test comes back positive or negative, I know something is very wrong in there.
 

2Cor.12:19

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Any updates on how you’re doing with treatment?

I did the home breath test yesterday. Just doing the 12 hour prep diet set everything off, who knows why.
As expected, the glucose drink really added to the party. Sick all day yesterday.

Then last night, 2am, stabbing pain in the lower gut, gas, dizziness, uncontrollably moving arms/ legs.
Has subsided some now, just feel sick.

Whether the test comes back positive or negative, I know something is very wrong in there.
So sorry the test made you sick. That glucose drink was pretty gross.
I haven't received the prescription yet. It's coming from a Canadian pharmacy via India - 2-3 weeks. ugh.
 

EddieB

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That glucose drink was pretty gross
Yep. The lactolose one I did a couple years ago made me very sick too, so I’m not surprised.

My concern is that how much worse I felt later, after completing the test. Further reading about it, the glucose can get absorbed early on and not reach the end of the small bowel, where the overgrowth is likely to be. So the test may have been for not. Have to wait and see.

I know, waiting, waiting...
 

2Cor.12:19

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@2Cor.12:19 what is the Canadian pharmacy? I compound my meds but I'd call to see what's in theirs to see if maybe maybe it's worth a try. The compounding pharmacies I spoke to so far said 200 something for a 2 week supply of 200mg? 3 times a day. Which is my dose. And another said 400 dollars. So if you guys have 500mg prescriptions it would be about 300 something maybe?? At the first pharmacy I spoke to. I don't know. But that's interesting that it's the same price or more at regular pharmacies since usually compounding is usually much more expensive. But I suppose I'm just comparing to insurance coverage with almost no co pays I have at regular pharmacies. Is it because xifaxan isn't generally covered that it's so expensive?
@PisForPerseverance I ordered from this Canadian pharmacy: https://www.mydrugcenter.com/vip
It comes with 100 pills for $180, so it’s enough for 2+ rounds of 550mg x 3 for 2 weeks. My doc said to refrigerate it and watch out for the expiration date though. The Canadian pharmacy orders it from India and said it takes 2-3 weeks to arrive. It’s the beginning of week 3 and I haven’t received it yet.
 
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Hello.

My gastro doc tested me for SIBO and prescribed Xifaxan (Rifaximin) with 2 refills. My insurance will have to investigate whether to cover it, and if they do my copay for one round will be $560. I really can't afford it but am willing to try it one time, but would be unable to continue. I have asked if she would be willing to try Flagyl (metronidazole) instead and am waiting to hear back from her.
I've read encouraging stories about Xifaxan for both SIBO and ME/CFS. This woman's story was nearly identical to mine: Health Rising: Esther's Xifaxan Story

UPDATE: My dr is sending a prescription to use at a Canadian pharmacy for a fraction of the cost. :)
I tried xifaxan for my multiple chemical sensitivities because I thought it was caused by SIBO, the xifaxan worked for a few weeks then had no effect. I had similar experience with oral nystatin and oral amphotericin b. As far as the cost of xifaxan, it was free for me because the doctors office knew the insurance wouldn't cover it, but they gave me the two week dosage as free samples. It is pretty easy to call doctors offices and tell the nurses/secretaries your situation, you might find a really nice one and they'll give you free samples.
 

2Cor.12:19

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I tried xifaxan for my multiple chemical sensitivities because I thought it was caused by SIBO, the xifaxan worked for a few weeks then had no effect. I had similar experience with oral nystatin and oral amphotericin b. As far as the cost of xifaxan, it was free for me because the doctors office knew the insurance wouldn't cover it, but they gave me the two week dosage as free samples. It is pretty easy to call doctors offices and tell the nurses/secretaries your situation, you might find a really nice one and they'll give you free samples.
@max_yazhbin Thanks. That’s a great idea. Sorry yours only helped temporarily- that seems to be common with SIBO treatment too. I guess it’s the underlying cause that keeps perpetuating the situation.
 
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@max_yazhbin Thanks. That’s a great idea. Sorry yours only helped temporarily- that seems to be common with SIBO treatment too. I guess it’s the underlying cause that keeps perpetuating the situation.
I am not sure if that's what's actually going on. In my case, I think it is likely due to a toxin from chernobyl, mercury fillings, and China that my body is unable to get rid of and that results in decreased ability to fight certain infections. When I take various antibiotics, it helps for a while but my body is unable to finish the job. Still not clear what that toxin is but I will continue my experiments which includes blood tests, medicines both herbal, chemical, and pharmaceutical, and other kinds of tests such as biopsies (done by doctors) and MRI (full body) all which I pay for out of pocket. It is not as expensive as insurance makes people fearful of.
 

EddieB

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I am not sure if that's what's actually going on.
You may already know this, if so forgive me, but there are different forms of sibo that requires different medications. Did you test for sibo or are you treating from symptoms?

I say this, as I just did a sibo test that came back negative. However, the GI map test (comprehensive stool) showed other overgrowth.