Anyone tried Xifaxan (Rifaximin) for SIBO?

[2Cor.12:19]

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.

 

[Sushi]

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

My experience with Xifaxan is good, though I needed to repeat the course every 3 to 6 months. My experience with Flagl was AWFUL—it exacerbated all my symptoms.

UPDATE: My dr is sending a prescription to use at a Canadian pharmacy for a fraction of the cost.

Yep, I also get it from a Canadian pharmacy!

 

[2Cor.12:19]

My experience with Xifaxan is good, though I needed to repeat the course every 3 to 6 months. My experience with Flagl was AWFUL—it exacerbated all my symptoms.
Yep, I also get it from a Canadian pharmacy!

Thanks @Sushi - did it improve you energy?

 

[EddieB]

Hello 2Cor,
I'm in the middle of this one too. My gastro gave me a two wee supply of xifaxin that I haven't take yet. We discussed sibo and he felt it was better to treat than test.

But after doing research, I found that if you have methane or hydrogen sulfide sibo, xifaxin alone won't do much. A second antibiotic is necessary or that expensive medication would be a waste.

Do you know which type of sibo you have?

I'm waiting to do the sibo triple gas test before I take anything,

And from what I've read, regardless of which tupe you have, xifaxin alone isn't enough. There are several herbs and supplements needed as well.

Look up Dr Mark Pimentel, lots of information.

 

[2Cor.12:19]

Thanks @EddieB - Wow, you're so lucky to get a free 2 weeks supply! I phoned Walmart to ask how much 42 pills would cost out of pocket and it was over $2,000! The Canadian pharmacy my doctor is referring me to sells 100 pills for $80!

Yeah, I've read that they treat methane predominant SIBO by adding Neomycin or Flagyl. I don't know which I have yet as they're mailing the report to me, but they treat a lot SIBO and have had good success with Xifaxan alone. So that's what I'm doing for now, but we'll see.

Best wishes to you! Please let me know how it goes.

 

[EddieB]

Best wishes to you too. Hopefully we'll find some help.

Yes I was shocked when the doctor have me two weeks supply without testing, $2800 here in the US.

I did a one week course about 10 years ago, that cost me $500, it made me very sick and was of no help. I was later told that it wasn't enough.

And there are others here with far more knowlage than me, do a search on sibo

 

[Sushi]

But after doing research, I found that if you have methane or hydrogen sulfide sibo, xifaxin alone won't do much. A second antibiotic is necessary or that expensive medication would be a waste.

I don’t remember which type I have/had as the original prescription was years ago but he (Dr. Kenny DeMeirleir) did give me another antibiotic (enteric coated erythromycin) as well. He prescribed one course of erythromycin at the beginning of month one and Xifaxin at the beginning of month two and then the erythromycin again in month 3. I didn’t notice any change from the first antibiotic but I felt much better after Xifaxin.

Thanks @Sushi - did it improve you energy?

Not so much energy as it cleared my head and ended migraines and sinus infections. They came back a year one two later though and I have repeated Xifaxin a few times over the last 10 years.

 

[EddieB]

Another thing to take a look at, if you think you’ve had food poisoning...
https://www.ibssmart.com/

I’m waiting for results for this, should have next week sometime.

 

[EddieB]

This woman's story was nearly identical to mine: Health Rising: Esther's Xifaxan Story

I was just rereading this story and noticed something. It was mentioned about her being in Lake Tahoe in 1985.

This was supposedly a large outbreak that occurred. Dozens of people became ill with me/cfs.
Some of the claims are that this was enterovirus, and a sewage spill into the lake was the source. But I doubt a late-pregnant woman would be bobbing around in Lake Tahoe. So not sure how that fits into the story.

 

[2Cor.12:19]

I was just rereading this story and noticed something. It was mentioned about her being in Lake Tahoe in 1985.

This was supposedly a large outbreak that occurred. Dozens of people became ill with me/cfs.
Some of the claims are that this was enterovirus, and a sewage spill into the lake was the source. But I doubt a late-pregnant woman would be bobbing around in Lake Tahoe. So not sure how that fits into the story.

Yes and at the same time there was another outbreak of about the same size in a farming community about an our from there. I got sick in 86 after spending time there and driving through Incline Village, Tahoe, where the famous outbreak took place. First thing my dr asked was if I’d been to Tahoe. Investigators from the CDC worked with Drs Peterson and Cheney there in Incline, and there were plenty of theories- but no answers.

 

[EddieB]

Yes and at the same time there was another outbreak of about the same size in a farming community about an our from there.

I didn’t know about that one, what town was it? I know there was an outbreak in Truckee, but supposedly confined to one building.

got sick in 86 after spending time there and driving through Incline Village, Tahoe

I was there in December 1985, but didn’t get sick until July 1987. May or may not be related.

there were plenty of theories- but no answers.

Yes, exactly. Was it enterovirus, EBV, or something else? And in Esther’s case, was it SIBO or something else that the xifaxan treated?

I just got biopsy results back from Dr Chia, positive 2+ for entero. But my focus for now is on SIBO/ dysbiosis, awaiting test results.

Please keep us updated on your results and what you decide to do. Hope and prayers for a good outcome!

 

[2Cor.12:19]

I didn’t know about that one, what town was it? I know there was an outbreak in Truckee, but supposedly confined to one building.


I was there in December 1985, but didn’t get sick until July 1987. May or may not be related.


Yes, exactly. Was it enterovirus, EBV, or something else? And in Esther’s case, was it SIBO or something else that the xifaxan treated?

I just got biopsy results back from Dr Chia, positive 2+ for entero. But my focus for now is on SIBO/ dysbiosis, awaiting test results.

Please keep us updated on your results and what you decide to do. Hope and prayers for a good outcome!

Thank you @EddieB - It was Yerington, Nevada - a small farming community east of Tahoe. I ended being being treated by the doctor there for several years who was handling all the patients. I couldn’t afford Dr Peterson’s research approach and she was very open to new info and trying the latest treatments.


Glad to hear you’re getting some answers. Hope you get your SIBO results soon. My gastro doc gave me FODMAP info and had me download the FODMAP app from Monash University.

 

[Strawberry]

I took xifaxan last summer and had zero benefit. Ive had issues with gas ever since though and do believe it’s from the medicine.

 

[2Cor.12:19]

I took xifaxan last summer and had zero benefit. Ive had issues with gas ever since though and do believe it’s from the medicine.

@Strawberry I'm sorry to hear that.

 

[unicorn7]

Best wishes to you too. Hopefully we'll find some help.

Yes I was shocked when the doctor have me two weeks supply without testing, $2800 here in the US.

I did a one week course about 10 years ago, that cost me $500, it made me very sick and was of no help. I was later told that it wasn't enough.

And there are others here with far more knowlage than me, do a search on sibo

2800,- I thought it was a pretty expensive type of antibiotic, but it was 100-200 euro here, for a month.

It did help for my SIBO, although flagyl helps better for me. I get my microbiome tested and treat accordingly with whatever overgrowth there is.

 

[EddieB]

. I get my microbiome tested and treat accordingly with whatever overgrowth there is.

Wow, now that's interesting. I did not know they could treat from testing. Which test are you using?

 

[Strawberry]

I’m interested in that, too. Could have saved me if I knew WHY my methane was off the chart, instead of just xifaxan to blankly treat SIBO.

 

[EddieB]

I’m interested in that, too. Could have saved me if I knew WHY my methane was off the chart, instead of just xifaxan to blankly treat SIBO.

Absolutely. I have a microbiome test pending (GI map). I was told they couldn’t diagnose SIBO from it, but could show things that would suggest it. Sure would be nice to not be guessing.

You may already know this, but from what I’m reading, xifaxan alone won’t work for methane SIBO.

 

[PisForPerseverance]

@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?

 

[2Cor.12:19]

@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 don’t know which Canadian pharmacy yet as my dr is mailing me the script and info. I was told 100 pills will be $80 and there will be enough leftover for another round. My compounding pharmacy is local so I’ll ask them for a price too - but I doubt they can top the Canadian pharmacy.

I’ll let you know when I get the info.