Medications: Xifaxan

[RegM126]

I am new to this board but I wanted to know if anyone has tried Xifaxan?
I know the medication is used to treat IBS but I really feel a lot of the symptoms I am experiencing is due to an over growth of bad bacteria.
I was diagnosed with MC at 28yrs old, and had had symptoms for at least 4 or 5 years prior to the diagnosis, I am 34 now and the only time I have had relief from MC was a year ago after taking Macrobid for a few days to treat a bladder infection.
I have diarrhea on average 5 times a day and after having taken the antibiotics for a short period of time I had normal stools once a day only. This lasted about 2months and then my digestive system returned to its normal terrible ways basically.
I try to avoid medications at all costs especially long term, which is part of the appeal of Xifaxan. I am aware of the risks associated with antibiotics, mainly C. diff, but because of the extreme relief I had from Macrobid I really feel XIfaxan might be a solution, although I fear that too might only be temporary.

In the past I've gone gf with no relief.
I take high doses of probiotics and prebiotics
Ive also tried high doses of boswellia as well as other anti inflammatory supplements.
All with no success.

[brandy]

Hi Reg,

Welcome to the board! If you don't already have Tex's book link for it is in the upper right hand corner. His book is very helpful.

I tried Xifaxan before diagnosis. I had severe cramping within 30 minutes of taking it. I think I only took one pill it was that severe. I was driving and had to pull off the road.

How long were you GF? It may take 10 weeks or so to see results. Diet is key to getting into remission. GF and simple diet is key.

Generally folks see results with: pepto bismol or cholestermine (not sure if spelled correctly) or Entocort/Uceris.

I was an Entocort user and made diet modifications. I've been in remission for awhile.

I reacted to probiotics. Supplements and probiotics can be problematic for us when not in remission. Consider going without them for awhile and sticking to simple GF DF diet that is unprocessed.

What are you eating in a given day?

[brandy]

Meant to mention I was on Entocort for 4.5 months....not long term....but I also made diet changes per the board.

Many of our members go into remission through diet alone, i.e. no drugs.

[Gabes-Apg]

welcome Reg

to expand on what Brandy has written, diet wise if you tried Gluten Free but did not remove other inflammatory triggers like Dairy, Alcohol, Fibre, it would have limited scope of effectiveness.

the other thing with MC, is that the treatment protocols of anti-inflammatory supplements for other IBD's dont tend to work for MC. and the same for pro-biotics/prebiotics. when the gut is inflammed, they have tended to cause more issue than benefit for most MC'ers.

once inflammation has reduced and some gut healing has occurred then some MC'ers use single strain type pro-biotics.

Please read the posts (and subsequent discussions) aimed at new people and the success stories area, this will give you some info/ideas on what life with MC is like.
Feel free to ask questions..

The best eating plan for MC is bland (no spices), wellcooked, small amount of ingredients. things like soups, stews settle well. avoid processed foods (even GF ones) meat and veges meals work best. Avoiding gluten and dairy totally. stop supplements for now and let the inflammation levels reduce.

Have you had your Vit D3 levels checked in the past 3-6 months... do you supplement with Vit D3?
many have seen great benefit from sticking with the bland eating plan and supplementing with Vit D3 and magnesium.

[tex]

Hi Regina,

Welcome to our Internet family. A number of members here have tried rifaximin, and a few have tried it multiple times, but as best I can recall, no one has ever reported any benefits that lasted more than just a week or 2. It's claimed to be good for "travelers diarrhea", but unfortunately, MC definitely isn't travelers diarrhea.

I agree with Brandy and Gabes, if you have had symptoms for years, a GF diet for a few weeks is unlikely to bring relief. It typically takes much longer than that, and a much more limiting diet is necessary in order to be effective when intestinal damage has been accruing for so long. And if you were taking any meds (other than budesonide), supplements, or probiotics, or eating normal amounts of fiber, sugar, or spices, or any raw vegetables while you trialed the GF diet, they could have easily prevented remission. IOW, there are no magical shortcuts to remission. Recovery is almost always a drawn-out, difficult process that requires hard work and dedication.

It's certainly possible that your MC may be due to a bacterial infection. But to date, I don't recall anyone here who successfully controlled their MC by treating SIBO or any other bacterial infection for more than a brief interlude. IOW, an antibiotic will sometimes bring temporary relief, but it doesn't last. And as you are probably aware, extensively repeated antibiotic treatments can lead to other problems. One of the problems is that MC causes SIBO (rather than the other way around), so treating the SIBO does not actually address the basic cause of the inflammation (of which MC is a symptom.

You may be the first I've ever heard of to have used a macrolide to attempt to treat MC. Some members here have used macrolides to treat other issues, but not MC, to my knowledge. What's interesting about the macrolides is that as far as I am aware, they are the only class of antibiotics that is effective against Mycobacterium avium subspecies paratuberculosis (MAP) bacteria. MAP bacteria have long been suspected of causing IBDs, but so far medical proof has been elusive, because the bacteria are able to hide in tissue cells, and escape detection under the microscope except under very special conditions. The biggest risk of using macrolides to treat MC is that if they bacteria are not completely erradicated, they quickly build up a tolerance for macrolides, and there are no other antibiotics available that are effective for controlling them. Successful eradication requires a very carefully orchestrated treatment regimen, but of course if it is not 100 % successful, then it leaves some of the population with antibiotic resistance/tolerance. You may be interested in the long (6-page) discussion at the following link:

Another Clue That IBDs May Be Caused By A Mycobacterium

Again, welcome aboard, and please feel free to ask anything.

Tex

[robinc2525]

Tex,
Where could I find information on MC causing SIBO?

[tex]

Hi Robin,

Frankly I would be surprised if you will ever find that information anywhere (at least, you are not likely to find verified data), because most physicians have it backwards — they are more likely to believe that SIBO causes all of the diseases associated with it, rather than the other way around. When physicians and medical researchers cannot figure out a reason for a disease they look at associations. If SIBO is present, for example, then they are very likely to blame SIBO for the disease with which it is associated. Many diseases are associated with SIBO. You can see a list at this link:

SIBO- Small Intestine Bacterial Overgrowth

But just because SIBO happens to be hanging out in the neighborhood of a disease does not mean that it caused the disease. Fire trucks can be found hanging out around fires, but they rarely are the cause of the fire. Just as fire trucks are attracted to fires, so are bacteria attracted to digestive system issues. Diseases create opportunities for bacteria, so who can blame them for taking advantage of the situation? Logic suggests that SIBO is not likely to cause all of those diseases. It's much more likely that those diseases cause SIBO because virtually every one of those diseases is related to (or caused by) a digestive system disorder. Digestive system disorders tend to cause poor digestion and poor digestion causes a disruption in gut bacteria populations (because opportunistic bacteria take advantage of undigested or poorly-digested food to establish colonies that thrive on the products of poor digestion). So it's much more likely that digestive system issues cause SIBO than the other way around.

And no one will ever prove or disprove this theory because no one is going to allow the use of random controlled trials to induce SIBO in human subjects. So probably, for the foreseeable future anyway, physicians and medical researchers are likely to continue to blame SIBO for various diseases, when they are actually symptoms of those diseases.

And in the case of MC and SIBO, the symptoms are so similar that it's almost impossible to tell the difference anyway. The breath tests or similar tests that are commonly used to identify SIBO have so many problems that they tend to have rather poor reliability.

A recent prospective study on 120 patients identified that clinical symptomatology is inefficient in distinguishing patients with IBS from patients with microscopic colitis and suggested that a colonoscopy is imperative, latest when antibiotic treatment does not relieve the patients symptoms [6, 75]. Similarly to the symptomatic overlap between IBS and microscopic colitis, there is substantial symptom overlap between patients with small intestinal bacterial overgrowth (SIBO) and microscopic colitis. A recent prospective study performed in patients previously diagnosed with IBS suggested that a colonoscopy with biopsies is imperative in these patients and even a routine glucose H2 breath test should be considered, at least when microscopic colitis is ruled out [74]. The majority of patients with microscopic colitis but not all would fulfill the diagnostic criteria for IBS. Following a study from Sweden recruiting patients from 2002 to 2010, 55% of patients with microscopic colitis fulfilled ROME III criteria of IBS. It is worth mentioning, that this study identified that if patients with microscopic colitis fulfill ROME III criteria, they are according to this study more likely to have severe symptoms and have worse psychological well-being, compared to patients with microscopic colitis that do not fulfill ROME III criteria [76].

Microscopic Colitis: Epidemiology, Pathophysiology, Diagnosis and Current Management—An Update 2013

And consider this research abstract:

AIM: To estimate the prevalence of microscopic colitis and SIBO in patients with IBS, to evaluate the symptoms and the efficacy of treatment.

MATERIAL AND METHODS: We examined patients with IBS admitted in our clinic during a three-year period. We identified patients with microscopic colitis by performing total colonoscopy with multiple biopsies from normal intestinal mucosa and those with SIBO by performing a H2-breath test with glucose. We compared the symptoms and the effectiveness of the treatment.

RESULTS: Out of the 132 patients initially diagnosed with IBS 3% (n=4) had microscopic colitis and 43.9% (n=58) had SIBO. Diarrhea was the main symptom in patients with microscopic colitis and SIBO (p=0.041), while abdominal pain, abdominal bloating and flatulence were prominent in IBS patients (p=0.042; p=0.039; p=0.048). Specific treatment with rifaximin in SIBO patients negativated H2-breath test in 70.9% cases.

CONCLUSIONS: Patients suspected to have irritable bowel syndrome should be evaluated for microscopic colitis and SIBO. The proper diagnosis and the specific treatment may cure some difficult cases of the so called "irritable bowel syndrome".

Microscopic colitis and small intestinal bacterial overgrowth--diagnosis behind the irritable bowel syndrome?

Note the sentence that I highlighted in red. I would be willing to bet a GF cookie that roughly 3 weeks after that rifaximin treatment was ended, virtually all of those 70.9 % of SIBO patients whose breath test showed negative results for SIBO after the rifaximin tratment, would no longer show negative breath test results (if the researchers had only bothered to do a followup set of tests).

Tex

[robinc2525]

As always Tex thank you for your insight. It makes sense the way you explain it and I can see your logic. I understand then that you believe that MC should be treated first and then the SIBO goes away. That's where the difficulty lies with me. When I was diagnosed with MC (3 years ago) I changed my diet, went through many elimination/test phases and I was able to get rid of the MC symptoms (urgent watery D, waking at night to go) that came on suddenly and led to my diagnosis. I tested with Enterolab and found gluten to be my only problem which I have never eaten again. I also cut out dairy at that time and rarely eat eggs. During this time my gastro prescribed several drugs, none of which seemed to make any difference (Lialda, Uceris, Apriso). What really helped me was diet, and I pretty much went back to my "regular" gastrointestinal difficulties that I had before I was diagnosed with MC, which were urgency in the morning, sometimes loose stools and an odd discomfort on my right side under my ribcage (gb and liver were checked by MRI and nothing seen). It seemed like the MC was under control and my gastro said these other symptoms were due to IBS. Although I did feel like the MC was controlled with diet, I kept searching for an answer to my "ibs" symptoms and tested for SIBO which I tested positive for. It seemed plausible that this could be the last part of the equation and if I could eradicate the SIBO, the rest of the my symptoms would be gone. However I have been unable to do that using using xifaxan, herbals and even an 2 week elemental diet.

So that brings me back to your theory on MC causing SIBO. If that is the case it would mean that the SIBO is not going away because the MC is still active somehow. The only thing I can think of to try at this point is LDN. I have read a bunch of stuff on here about it and maybe it would help reduce inflammation enough to improve digestion so that the SIBO can resolve. As I told you in another thread, the cholestyramine helps me but at this point my cholesterol is so low that it doesn't seem like a good option for me. I read that SIBO can cause low cholesterol and low albumin- both of which show up for me on blood tests and seem to be creating other problems for me with hormones etc. I also have bile acid malabsorption it seems, also common with SIBO. I am going to try to get my LDL up by using your pointers so maybe cholestyramine will be an option in the future.

Thanks again-
Robin

[tex]

Robin,

I didn't mean to imply that SIBO should never be treated because obviously if it continues after MC symptoms are controlled then something is out of order and needs attention. The problem is that the condition only responds temporarily to antibiotic treatments. At least that seems to be the case for virtually all MC patients. Has anyone had any success controlling SIBO in non-MC patients? The problem with the way that most medical researchers and physicians think is that if an issue responds to treatment and the patient is still in remission for a week or 2 afterward, they consider the case closed. If the patient comes back a week or 2 after that with a relapse of symptoms, the medical professionals prefer to think of that as a separate event, when in fact it's merely a continuation of the original problem. The reason why they have trouble reconciling this is because it conflicts with their time-honored definition of a positive response to a drug treatment.

But to get back to the problem at hand, if an unacceptable bacteria population balance is present despite the fact that digestion is good (or at least adequate), that raises the possibility that a major species of bacteria that should be present (according to your diet) is missing in your gut (and possibly missing in your environment). A fecal transplant (preferably from a spouse or a close relative) might work. Presumably it would be enhanced by a rifaximin (or some other appropriate antibiotic) treatment prior to the transplant, in order to cut down the competition for the transplanted species. So far, according to all the evidence that I've seen, fecal transplants are not helpful for treating MC, but they are definitely helpful for treating bacterial infections so they should be helpful for treating SIBO issues.

You're very welcome,
Tex