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Xifaxan Experiences and/ or Side Effects, Anyone?

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#1 HappilyHealing

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Posted 06 May 2014 - 12:49 PM

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Hi there,
 
 
I've been lurking on this site for a while now, but this is my first time posting- nice to meet you all! 
 
So my doctor prescribed Xifaxan 550mg 3x's/day for 14 days for SIBO (diagnosed through hydrogen breath test), and today will be my fifth day taking it. My symptoms so far have included: fatigue, increased abdominal bloating, more frequent bowel movements, increased hunger, and a highly unusual amount of anxiety/anger/mood swings, which began the day after I began taking it. Also, it's probably important to note that I'm not anywhere near my monthly cycle, so these symptoms definitely cannot be attributed to PMS.  
 
Regarding the bloating, although I've read posts from others mentioning increased bloating/abdominal distention during Xifaxan, I guess I'm a little concerned because it seemed as though the majority of people expressed that Xifaxan either improved their IBS/SIBO symptoms pretty soon after taking the first dose (24-48 hours seems to be the norm), or it really didn't have an effect. The fact that my bloating has actually gotten worse is a little disconcerting.
 
In terms of the sudden (and literally almost uncontrollable) increase in my appetite, I'm a little dumbfounded. I've looked everywhere I can think of and haven't found this as a known side effect. While I realize it may seem as though it's probably unrelated to the Xifaxan, I am 100% confident that it is, as I have been following an SCD, low FODMAPS, low carb, low sugar (only sugar I eat is in the form of cooked carrots) diet for a few months now and I generally don't have any desire for sugar/processed "frankenfood" anymore. This is a far cry from the past few days, in which I've been scouring the kitchen for all things SIBO illegal, including gluten (which, prior to Xifaxan, I hadn't eaten for TWO YEARS) and high sugar foods. I don't know how likely this is, but I'm wondering if it's possible that the Xifaxan is killing off the bacteria, and as a result, they're becoming desperate for subsistence to survive, thus the intense sugar cravings. Yeah, I realize that's quite the reach smile.png. Just don't know what the heck is going on.
 
Finally, regarding the sudden onset of anxiety/anger/mood swings, I'm also at a loss because, like the increased appetite, I haven't found this listed anywhere as a known side effect. 
 
What were your experiences and/or side effects on Xifaxan? 

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#2 Perseus

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Posted 06 May 2014 - 03:47 PM

Today's also my fifth day taking Xifaxan 550 3x/d, but I'm also taking Neomycin 500 mg 2x/d. I've not had increased bolating, but at about 22 hours since my first dose I felt really dizzy and unwell. What I'm assuming were die off symptoms (dizzy) only lasted about 8 hours. I'm glad it happened before my first Neomycine dose (parmacy had to order it) or I wouldn't have taken it since I was hesitant.
 
I've also been tired and have had diarhea twice a day. At night and in the morning. I thought Neomycin was causing that since I'm not having diarhea after my afternoon dose of Rifaximin (Xifaxan). I'm generally failry moody/angry/stressed so not sure if that's any worse. It's certainly not better. I've been craving sugar madly and really hungry. I also have questions about Rifaximin and diet if you wanted to look at that. It's in the IBC-C forum. I'm ovo-lacto vegetarian. I've tried gluten free on and off, but in January had a gluten binge while having to eat out regularly for two weeks. I've been gluten free since I've started Rifax and Neo, but will do vegetarian SCD once I'm done taking these.
 
Please continue sharing your progress.


#3 HappilyHealing

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Posted 06 May 2014 - 05:44 PM

Thanks for your response, imcured! I'm sorry you're feeling crummy; hopefully it will pass sooner than later. The fatigue is really a pain, isn't it? I will definitely check out your questions on Rifaximin and diet- it's always great to get an idea of what others are doing, as there are so many different recommendations out there, it can be difficult to know what the best route is.

 

Out of curiosity, were you tested for both hydrogen and methane via breath test or did your doctor determine your treatment plan based on symptoms alone? I'm self-diagnosed as IBS-C (for lack of a better explanation of what is wrong with me), and my doctor had me do the hydrogen breath test. He said that methane producing bacteria are rare in terms of SIBO, which is why he didn't test me for methane (strange, considering I'm constipation predominant). This doesn't seem to make sense as everything I've read regarding SIBO recommends different treatment protocols depending on whether the patient is experiencing constipation or diarrhea. I'm thinking if the Xifaxan doesn't end up doing the trick on it's own, I'll probably try the Neomycin/Xifaxan combo. 



#4 SKW

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Posted 07 May 2014 - 12:12 AM

I took Xifaxan a few weeks ago. It was my third time trying; the first time, it made my bloating worse so I stopped 3 days in. The second time, I lasted a week but it had no effect.

 

This time, I lasted 4 days. I blew up like a balloon immediately after taking the first pill, and stayed extremely bloated for the next 4 days. No relief. I was waking up bloated/distended every morning, and saw no improvement even after going to the bathroom. It was extremely miserable and I missed 3 days of work on it. It was a terrible experience. It was the most miserable I can remember feeling in months. HOWEVER - I was having a pretty awful IBS flare up (I always feel pretty bad, but this was worse than usual) when I started the treatment; this flare-up had already been going on for nearly 2 weeks. So I'm not sure if that's why I felt SO awful on the Xifaxan.

 

I went off the Xifaxan (this is about 2 weeks ago) and it still took about 2-3 days for the bloating to go away. What's very strange to me is that the last 10 days, I have felt so much better than I have felt in months. BUT, I am strongly hesitant to attribute this to Xifaxan. A few reasons:

 

1) A couple days after I went off Xifaxan, I was still extremely bloated. I was honestly so miserable/upset/desperate that I popped a Zoloft one night after not taking any in years (I had been prescribed for IBS). The next morning, I had a bowel movement AS SOON as I woke up and my bloating was mysteriously gone. 

2) I also happened to fly back to NY (I am bi-coastal but NYC is my homebase) for the week so the reduced stress of being home/away from work might have helped

3) While I was in NY, I saw my acupuncturist, which always helps me feel better

 

Anyway, all I know is that the last week or so, I have had minimal bloating, I have gone to the bathroom immediately upon waking up several days (and this has not happened to me in YEARS), and gone multiple times in a day sometimes. It has been incredible. (Note I am still following a VERY strict low fodmaps, gluten free, grain free, soy free, dairy free diet because i'm scared to eat anything else). I also had been having weird water retention issues for the last few months and that seems to have improved.

 

I have no idea what to attribute this improvement to. I am somewhat doubtful it was the Xifaxan because I felt so awful on it. I literlaly went from wanting to die, to feeling better than I have felt since January. Knowing my body though, this will not last. I do plan to try Xifaxan again at some point in the next couple months so I can figure out if it really does work for me.

 

I've also asked several doctors and none of them had heard of Xifaxan making people feel worse. I saw an IBS constipation/bloating specialist when I was in NY and she didn't seem too concerned when I tried telling her that the Xifaxan made me miserable. Either she didn't believe me, or she just wasn't fazed. She did say that she would maybe want to try and treat me with it again in the future, but only after trying some other things first in the meantime.

 

so that's my two cents. I don't know how bad your bloating is, but the bloating was so bad that it made me so upset I felt like I was on the verge of having a mental breakdown. I know now that the next time I take it, I have to take off work for at least a week.



#5 Perseus

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Posted 07 May 2014 - 08:13 AM

Hi Happily,
 
Thanks for your input on diet while on Rifaximin, it helps a lot.
 
I've had all the symptoms for IBS-C and most SIBO symptoms listed on a certain sibo info website for at least five years except I didn't know you could be constipated with IBS even when my husband suggested I had it. I said no. I'd also never heard of SIBO. I had so many symptoms from Hypothyroid, that I kept thinking it was my thyroid causing some of my problems and me causing the rest. I'm also a bit of a problem-solver and tend to blame myself so if I'm constipated - I take magnesium, if I'm deficient - I supplement, if my stomach hurts - it's something I've done etc. In turn I've gotten used to being uncomfortable and ill.
 
But finally I came across SIBO online a couple of weeks ago, read the symptoms and knew without a doubt that I had it. So I talked to my doctor who agreed it seemed plausible (especially due to increasing nutritional deficiencies) and was willing to prescribe based on symptoms alone. I researched pimental etc and asked for rifaximin + neomycin based on being purely C-type. So I haven't had a methane (or Hydrogen) test (Which my doc didn't seem to think were too reliable anyway).
 
Also, yesterday I realized that I am in fact a bit bloated, but less than I have been at various points. I had to keep my jeans unbuttoned while sitting. I also had diarrhea at night before taking rifaximin and neomycin since I'd forgotten them at home. The urge came on suddenly and we had to rush home. I took the antibiotics right afterwards (an hour late).


#6 Perseus

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Posted 07 May 2014 - 09:47 AM

Happily, thought this might be helpful "People who make methane do not necessarily pass more gas or have unique symptoms. A person who produces methane will have stools that consistently float in water." found online



#7 HappilyHealing

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Posted 07 May 2014 - 07:28 PM

Thanks for your responses, SKW and imcured!

 

Today is my 6th day on Xifaxan, and I woke up feeling a bit better this morning. My extreme hunger and sugar cravings have relaxed a bit and I'm not nearly as exhausted (I basically watched TV and felt like a complete waste of life for the past two days, haha). I also haven't felt as irritable or angry, which is a wonderful, as it was becoming unbearable to deal with. I now think the horrific symptoms I was experiencing the first few days were most likely die-off related (thanks, imcured!). I guess it's probably a good sign that the bacteria are dying. 

 

One side effect that has remained; however, is the massive amount of bloating. I look as though I'm 6 months pregnant in the morning and 100 months pregnant in the evening smile.png. I'm actually surprised, considering my bowel movements have become much more frequent ever since I took the first pill. I went from one bowel movement a day to about three per day (no diarrhea, though). I also seem to be carrying around a bit of water weight, so between the bloating and the overall puffiness, I feel very uncomfortable. 

 

SKW, thanks for sharing your experience! I'm so sorry to hear about the torment Xifaxan has been causing you (it is certainly not for the faint of heart), but very happy to hear you've found some relief. I wonder if you were also experiencing some die-off in the first few days of taking it, which is why your symptoms were worsening. I certainly wasn't expecting my symptoms to get worse after starting Xifaxan, as most of the feedback I'd heard from others was that it miraculously made bloating disappear. Sigh. I suppose it just doesn't work that way for everyone. I found a podcast online yesterday (on a site called "scdlifestyle"), which was an interview with Allison Siebecker, and she described her clinical experience with die-off. She said it can generally last for about 3-7 days, which I was actually very happy to hear (sure beats thinking you're crazy!). Seems to make sense for your timeline of Xifaxan side effects as well. 

 

Imcured, It's a bit remarkable how similar our experiences seem to have been. I, too, have spent the last 5 years suffering before ever even hearing of SIBO. When I finally came across an overview of the condition online, I immediately knew this had to be what was plaguing me. Also, long before I had ever heard of SIBO, I began suspecting that I had issues with low thyroid function, as so many of the symptoms overlap. A naturopathic doctor I was seeing at the time tested me and found that I was within the normal range for free t3, free t4, and TSH; however, she decided to treat me with Nature-throid desiccated thyroid under the premise that I had subclinical hypothyroidism. The thyroid medicine definitely improved the frequency of my bowel movements (I went from about one BM/week to once/day), dry skin, and sensitivity to cold temperatures, but my fatigue and bloating remained in full force, and progressively became more and more unbearable over time.

 

Thanks for the quote on Methane- very helpful, indeed! I agree that the breath tests seem to be a bit overvalued in terms of reliability. It was also a pain to prepare for as my doctor instructed me to only eat chicken for 24 hours prior. I've come a long way with my diet, but I can think of few things worse than eating only chicken. Blah. Alas, I suppose desperate times call for desperate measures. 

 

Anyways, thanks again, and please keep us posted on your progress!



#8 Perseus

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Posted 08 May 2014 - 07:38 AM

I'm sorry about the bloating and hope it passes soon. Just wondering, are you going to take a motility drug once your done with Xifaxan?



#9 HappilyHealing

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Posted 09 May 2014 - 12:49 PM

Hi Perseus,

 

Yes, I'm definitely planning to. I have an appointment with my gastro doctor on Monday, so I'm going to try and get him to prescribe me low-dose erythromycin, which I've read to can be very helpful. Here's hoping! 



#10 Perseus

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Posted 11 May 2014 - 09:43 AM

Hi HappilyHealing,
 
How are things going?
 
Here's my update: I've only had D since starting Rifaximin and Neomycin. I've still been burping with morning coffee with milk, when I'm stressed and possibly with other dairy (hollandaise with butter as first ingredient). I've purposely added sugar and sweets, but feel hesitant about it and unsure about how to eat still.
 
 After today's big BM I expected my stomach to go down a bit, but it's hasn't. I can't tell if it's bloated or fat.
 
Have your thyroid antibodies tested? If you don't have any antibodies either, then it's may be something else and treating with thyroid hormone might make things worse in the long run?
 
I was pretty happy myself about finding that methane info! MY BM's always float! Except now because of Rifaximin and Neomycine causing D.
 
Thanks for your reply on motility drug. I asked my PC about it,  but he didn't think it was necessary. On the other hand, he (said) he doesn't know too much about SIBO or it's treatment. I might hold off though in order to see how my increased thyroid medicine affects me since one of my biggest markers has been constipation.


#11 newly_diagnosed_PI_IBS

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Posted 11 May 2014 - 08:25 PM

Hi- I just started a two week course of Xifaxan as well. I am not feeling better 4 days in-- my symptoms still persist, which are bloating and fatigue. My main IBS symptom has been bloating, and the medicine is definitely making me feel even more tired than I normally am. I am hopeful that after the 2 week course I start to feel better however and that the continued bloating is from the common side effects reported for this medicine. Please keep me posted on your progress! I am also starting hypnosis this week to help combat my PI-IBS (clinical studies report up improvement of symptoms in ~80% of patients). 



#12 Perseus

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Posted 15 May 2014 - 09:50 AM

Hi HappyHealing,

 

How's your progress? Mine's not great. I wish I hadn't intentionally added sugar/sweets as it caused me a lot of bloating. I'm also now constipated and have been for several days which may have been triggered may have been triggered by accidentally eating a huge bowl of wheat noodles that were listed on a menu as gluten free among other things like sugar and dairy. After that meal I looked like I swallowed a watermelon and had some other issues. So, I'm not too optimistic and feel a bit sad about it all , but I've finally decided to give up milk and also not eat past 8pm and to make a few other changes which I hope will help.



#13 HappilyHealing

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Posted 15 May 2014 - 09:10 PM

Hey guys,

 

Sorry for the radio silence; I've been feeling pretty terrible over the past week or so. I even missed my Dr's appointment on Monday, as his office is nearly two hours from my house and I just didn't have the energy to drive all the way there. Man, this Xifaxan thing is really rough, eh? Thankfully today is my last day, so I'm pretty thrilled.

 

I'm sorry to hear your experiences aren't going well either, Perseus and Newly_diagnosed_PI_IBS. I can definitely relate to the intense bloating from eating sweets/carbs, Perseus. I can't say that I regret eating the sweets quite yet, as if it did somehow make the Xifaxan more effective, it's probably been worth it; however, it certainly hasn't been any walk in the park. I've tried incorporating sweets into my diet (aka I got really piggy) for a total of 4 of the 14 days on Xifaxan. This bloated me like a balloon. Most of the other days (I'd say between 6-7), I incorporated some FODMAPS in the form of butternut squash in an attempt to try and further "coax" the bacteria out of hiding for the xifaxan to blast them. This also bloated me like crazy. 

 

Overall, I am frankly astonished by the degree to which my stomach can expand without rupturing. I feel like that Violet character from Willy Wonka after she ate the candy. Except maybe a little more bloated. It's pretty embarrassing. In addition to that, the fatigue, water retention, and overall depressed mood have been a real pain in the a** to deal with. I take my last pill this evening, and I am hoping beyond hope that something will come of this. Honestly, at this point I'm almost just hoping things will return to normal, as what I was experiencing before almost felt bearable compared to this. I found this quote from someone on another forum when I was first about to take Xifaxan, and I've found it helpful to read every now and then:

 

"Give the rifaximin the full course and then wait around 48 hours after you're finished with it to make the final call. Most of the times I've taken rifaximin it has worked, but I generally have been more bloated/distended (if that's possible) while actually on the drug due to the "die off" effect from the bacteria. Rifaximin also makes me retain water; I routinely gain about 6-8 pounds while on it and it all comes off within 48 hours of stopping". 

 

This has been giving me some hope throughout all of this, and hopefully it'll cheer you up a bit as well. I'll be updating you soon on my progress (if not tomorrow, then within the next few days), and please keep me updated as well. Wishing you all lots of luck!



#14 HappilyHealing

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Posted 15 May 2014 - 10:15 PM

*Double post, sorry.



#15 newly_diagnosed_PI_IBS

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Posted 16 May 2014 - 08:27 PM

HappilyHealing--thanks for the update and posting that quote! It is very helpful knowing that others are also bloated and not feeling immediate relief (my bloating is still the same). I have 4 more days to go on my 2 week course and can't wait to be done and get back on probiotics and vitamins etc.. to see if I start feeling better. I am so fatigued and pale this week and getting tears at the corners of my mouth (I attribute this to the medicine but was also low on iron which can contribute to this). During these meds I have stopped all vitamins, iron pills etc.. just in case since I don't want anything interacting with the medicine even though the pharmacist said there were no interactions with foods/supplements. Please let us know how you recover and I will also post next week to update on my recovery! 



#16 HappilyHealing

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Posted 17 May 2014 - 07:24 PM

Thanks for the update, newly_diagnosed_PI_IBS! I'm really sorry to hear how bad you've been feeling. The fatigue is so hard to deal with. It's strange because I'm generally a very ambitious, driven person, but ever since I started Xifaxan, I've been completely unmotivated and apathetic towards pretty much anything that doesn't involve sitting on the couch and watching T.V. Hopefully it will pass soon. 

 

This is my second day being off of Xifaxan, and I can't really say I feel much different. Not a huge deal, as I really wasn't expecting to feel anything major until maybe Monday or Tuesday, as my body tends to be very sensitive to things like this. The fatigue is still here (in spades), I'm still super bloated, and I still have a good 5 pounds hanging around, presumably from water retention. I tried taking an epsom salt bath yesterday in an attempt to release any lingering toxins from the bacteria, which did make me feel refreshed in a weird way. I also took a couple of epsom salt baths during Xifaxan and it gave me the same feeling, though it unfortunately didn't have any effect on the bloating. The only difference I can truly say that I've noticed both yesterday and today is a relief from that awful feeling of fullness that I constantly felt while taking Xifaxan. It's hard to describe, and maybe you've experienced it yourself. It's separate from the overall bloating and water retention, but rather after every meal, big or small, I just felt "stuffed". Anyways, it's definitely nice to not feel that way 24/7 anymore. 

 

I'll keep you posted on my progress over the next couple days, and hopefully I have some good news to report! Hope all is well, and keep your chin up!



#17 HappilyHealing

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Posted 22 May 2014 - 12:07 PM

Hey everyone,

 

Thought I'd give you an update on my progress. Sadly, I can't really say there's been much. My third day being off of Xifaxan was on Sunday, and I felt TERRIBLE. I was really bloated and debilitatingly tired all day, and by the afternoon I began experiencing some flu-like symptoms, such as the chills, body aches, and just that general feeling of being unwell. The only slight improvement I did notice was a modest reduction in the water retention I'd been carrying around, but the bloating was just as bad as when I was on Xifaxan. The following morning, I woke up feeling slightly better- no more flu symptoms, but the extreme fatigue and bloating remained in full force. The water retention was a bit better, though nowhere near back to normal. This feeling of extreme pregnancy-like bloating has persisted all week. The only thing that seems to be helping is reducing my consumption of vegetables and fiber in general. I seem to have a REALLY hard time breaking down vegetables, even in their cooked state (leaky gut, perhaps?). Over the past couple days, I've been cooking and pureeing a small amount of carrots and cucumbers, which has definitely seemed to help my bloating. 

 

In addition, I believe there are a couple variables worth noting:

 

1) I'm not sure if Xifaxan has messed up my menstrual cycle this month. As of Monday, I've been experiencing symptoms that feel exactly like PMS, despite the fact that my period is not due until next Monday, and I generally only start getting PMS symptoms 2-3 days before my period. My breasts are very swollen and painful (more so than I experienced while on Xifaxan, so I highly doubt it's just lingering water retention), I feel very emotional (although this can also reasonably be expected considering the anxiety I've felt about the whole Xifaxan thing). That said, I can't say for sure just how much of the bloating, fatigue, and lingering water retention is associated with Xifaxan, or if I'm going to start my period early. I'm looking forward to finding out.

 

2) In terms of bloating and fatigue, I actually feel worse after taking Xifaxan. However, there are a couple positive changes. First, the horrible smell of my gas is completely gone. I used to have the most awful, embarrassing odor to my gas, and now it's nearly odorless. Second, while my bowel movements are nowhere near as frequent as they were while on Xifaxan, I do have them about twice a day now, as opposed to before when I only went once a day. However, I will say that my incomplete evacuation has returned after stopping the medicine, which is a bummer. 

 

Ultimately, do I think Xifaxan helped me? Sadly, no. Of course, this absolutely doesn't mean that it won't help you- everyone if different and I wish I were one of the people it seems to help but, alas, I am not. 

 

Anyways, I'll keep you updated if anything changes or something comes up that I feel is worth noting. Please let me know how your progress is going as well!



#18 newly_diagnosed_PI_IBS

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Posted 23 May 2014 - 10:14 PM

Thanks for the update HappilyHealing! I have been off Xifaxan since Wednesday. My energy is slowly starting to come back, but for now bloating remains the approximately the same. I did also start hypnotherapy this week and this morning my bloating was slightly better than normal. However, I think it will take at least a few more weeks before I can tell if any of these treatments is helping. I need to get good bacteria back in my system and I am taking 1 Florastor in the mornings and an Align probiotic at night. 

Speaking of menstruation, it's been about 60 days since I have had my period (antibiotics probably didn't help either), my periods are somewhat inconsistent, but usually a 30-40 day cycle, 60 days is definitely abnormal for me (I am not pregnant). 

 

It's good to hear your bowel movements are pretty regular. I go between constipation and diarrhea and that hasn't changed yet post treatment. But I am hopeful this will help and giving myself more time (stress free time) to heal.

 

SIBO is a bit different from Post infectious IBS, but I think both have a lot of overlap in terms of symptoms. Definitely let me know how your healing progresses. I have my fingers crossed for you : ) 



#19 SIBOKid20

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Posted 15 September 2015 - 08:42 AM

Do either of you have any updates? I am thinking of taking xifaxin as nothing else I have done has even remotely worked.

#20 newly_diagnosed_PI_IBS

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Posted 20 September 2015 - 09:41 PM

SIBOKid20, the two week xifaxin did not work for my methane producing SIBO. I have read efficacy rate is around 50-60% from medical literature. I suggest doing reserach and talking to a functional medicine doctor who can recommend this drug with herbal drugs (e.g. allimax, berberine, oregano etc..). Alison Siebecker is one of the lead researchers for SIBO and owns the website http://www.siboinfo.com/ . I suggest you take a look at that or Dr. Pimentel's work. The standard GI doctors will just prescribe xifaxin and are not that well versed w/SIBO. I am still trying to beat SIBO 2 years after I got it.. currently on herbals and retesting with a breath test today.







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