SIBO advice? Any will help!

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MKW
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SIBO advice? Any will help!

Postby MKW » Mon Jan 29, 2018 3:10 pm

I had a successful FMT done in March 2017. About 2 months later I developed IBS symptoms and began seeking medical care due to my erratic symptoms. I have alternating D and C, lots of painful cramping and gas, and hard to determine food intolerances. I saw my PCP and I have seen a new GI specialist for 6 months three times for this. I recently had lots of bloodwork and stool tests for IBD and pancreatic dysfunction and pathogens. All negative. I have been on Klonopin for five months due to anxiety over symptoms.
So.... I finally asked to do a SIBO breath test due to some posters experiences on this board.
I just got the call - I am POSITIVE for non-methane hydrogen dominant SIBO.
The nurse practitioner who just called said the doctor wants to treat me with herbal and dietary therapies, not antibiotic due to my C Diff history. I have an appointment with the GI doctor tomorrow afternoon.
I feel relieved I know this now, but angry I was not tested before. I have suffered for a long time - 8 months now - and if I’d known it was SIBO there is so much I would have done differently.
Does anyone have any advice for me as to what questions to ask my doctor? Does anyone have any good or bad experiences with SIBO treatment that you can share with me? Any knowledge or advice on this condition or treatments anyone has would be most appreciated! - melanie

georgina
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Re: SIBO advice? Any will help!

Postby georgina » Tue Jan 30, 2018 1:01 am

Sorry you ended up with SIBO . Beth is one of our posters that ended up with SIBO after a nasogastric transplant and I belive that I too had it since I also had a nasogastric infusion but where I am living we do not have tests for it so I was just given treatment based on my symptoms and anamnesis. I was given several courses of Rifaximin and each course gave me great relief of symptoms . Don't know about treating SIBO with herbs , I know that SIBO is treated with Rifaximin or Flagyl. Also if you have SIBO , probiotics are not indicated.

beth22
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Re: SIBO advice? Any will help!

Postby beth22 » Tue Jan 30, 2018 2:31 am

Yes, I had one of the worst cases the SIBO specialist had seen. I did take a course of Xifaxan and it helped me, but I was also given a list of foods that I should not eat. I had already not been eating much of what the diet said was not good for SIBO, but it gave me a pretty good idea.

I would ask your doctor what your percentile was for the SIBO. Mine was 150% - off the charts! I think anything over 20 is positive, but check because I don't really remember the cut-off. However, after the Xifaxan my count went down to about 50%, still positive, but way better and I could eat more things. I think I still have SIBO, although these days I am more on the C side. It's manageable. Ask about diet. I know that my doctor recommended taking Curcumin as a supplement. I think Turmeric is also given. I don't know about any others. Let us know what the doctor recommends for supplements.

MKW
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Re: SIBO advice? Any will help!

Postby MKW » Tue Jan 30, 2018 9:53 am

Thank you for your replies! Georgina and Beth, you both indicated you were treated with Rifaximin/ xifaxan after having c Diff. Did your doctors tell you there was a risk of c Diff recurrence if you took it? Did you decide to take it despite a risk? Do you know anything about the risk statistically? ... I have already been told they do not plan to treat me with an antibiotic at this point due to my c Diff history, but plan to inquire about antibiotic options if I were to have worsening symptoms.

georgina
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Re: SIBO advice? Any will help!

Postby georgina » Sat Feb 03, 2018 5:31 am

I was told that Rifaximin will not put me at risk for a relapse ,but i knew from other posters stories that there is a small chance for that to happen , anyway i said to myself "what the heck , i'll take a chance and try it" so after i finished my course of vanco i started the chaser of Rifaximin , and after that i had to take several more courses for the next months (10 days / month). With each course it got me relief of symptoms and more tolerance to food.

beth22
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Re: SIBO advice? Any will help!

Postby beth22 » Sat Feb 03, 2018 6:00 pm

I took Xifaxan as a chaser to vanco and I still relapsed, but it took longer. But, after my FMT when I was diagnosed with SIBO, I took it and did not relapse from it. Unfortunately, I took Cipro some months later and did relapse, but subsequently had another FMT. I think the diet helped me too.

dallase1
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Re: SIBO advice? Any will help!

Postby dallase1 » Sun Feb 04, 2018 10:19 pm

How were you diagnosed with SIBO? Did the FMT cause the SIBO?

beth22
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Re: SIBO advice? Any will help!

Postby beth22 » Sun Feb 04, 2018 10:44 pm

I think the vancomycin caused the SIBO because when I stopped it, before FMT, I already had a lot of the symptoms. But, I was diagnosed after the FMT with a breath test. I tested 150%, which was off the chart and one of the highest readings that my doctor had seen and he has seen thousands because that is his specialty. He felt the FMT contributed to this, as the bacteria that is in the colon does not belong in the small intestine and by doing a top down procedure, the bacteria was put there.

dallase1
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Re: SIBO advice? Any will help!

Postby dallase1 » Mon Feb 05, 2018 7:42 am

Interesting. I took the FMT capsules so I should probably get tested in a few weeks to make sure I don’t have it. I don’t have any gas, bloating, or diahrea though. I just get nausea and general malaise that gets worse when I eat certain things. Is this from the C Diff?

MKW
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Re: SIBO advice? Any will help!

Postby MKW » Mon Feb 05, 2018 9:48 am

Thank you for all of the replies and personal experiences with this! It is good to know some of you had Rifaximin treatment without c Diff recurrence.
Dallase1, it is diagnosed by a breath test. I drank some type of non-digestible sugar solution, then put a breath sample into a glass tube for 2.5 hours. The tube samples are then mailed to a lab and analyzed. My insurance did not cover it. But I was told I’d be billed $250 dollars, so not super expensive. SIBo is aggravated by specific carbohydrates that the bacteria ferment. This process creates all the symptoms. Try eating a low FODMAP diet and see if you notice a difference in your symptoms.
I have no idea why my practitioner did not suggest testing me for this sooner. I have had symptoms for 8 months. I have come to feel like medical care in my area is a little behind in up to date care. I live in Richmond Va.

beth22
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Re: SIBO advice? Any will help!

Postby beth22 » Tue Feb 06, 2018 12:40 am

I had it done at a hospital and they tested it there. My insurance covered it 100%, but it was not that expensive - around $250 sounds about right.

MrsM25
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Re: SIBO advice? Any will help!

Postby MrsM25 » Tue Feb 06, 2018 1:43 am

I was just going to post something about SIBO and saw this! I myself had an FMT done almost 5 weeks ago and I wonder also if I suffer from SIBO. Mine was done via colonoscopy so I don’t know if that makes a difference at all but I really was curious what everyone’s symptoms were that made them think to get tested. Everything so far I thought was just a side effect of the FMT but I’m starting to wonder at this point if it’s something more. Reading the symptoms of SIBO online sound so similar to what I am dealing with but I don’t know. I guess the only way to know would be to ask my GI if I can get tested.

MKW
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Re: SIBO advice? Any will help!

Postby MKW » Tue Feb 06, 2018 4:26 pm

MrsM25, it would definitely be worth inquiring with your doctor. Read up on what foods aggravate symptoms. The Low Fodmap diet has been helpful (now that I have stuck with it). But this close following your FMT it is important for you to eat foods that will feed your new bacteria. So basically foods that are bad for SIBO and good for your colon bacteria. What a predicament we end up in with this!

MrsM25
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Re: SIBO advice? Any will help!

Postby MrsM25 » Tue Feb 06, 2018 4:51 pm

MKW, it has been such a struggle finding foods that I can actually tolerate that are good for me to feed my new bacteria. I’ve actually had some other strange symptoms and when I was reading about SIBO, it can cause those things also. I called my GI and left a message inquiring about SIBO but I’m not sure if he will refer me out because he’s a colon and rectal surgeon. He’s not a normal GI so if it has to do with the small bowel, he may make me see a regular GI. Not sure, I guess I will find out.

MKW
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Re: SIBO advice? Any will help!

Postby MKW » Fri Mar 09, 2018 1:57 pm

For anyone who is interested, after two weeks of strict low fodmap diet and Metagenics ultra GI replenish supplement, my Nutritionist/functional Medicine specialist is putting me on the following for 4 weeks:

Candibactin BR by Metagenics
Candicidal (by Xymogen)
Biotics FC Cidal (at week two)

I will not take the supplement during this time but will still be on the low fodmap diet. Following this, if treatment works, I will re-add probiotics and possibly the supplement again.
My Gastroenterologist recommended I do the herbal therapy over Rifaximin. So we’ll see.

I’m scared that anything I do will cause c Diff recurrence even though I’m a year from my FMT. It makes me nervous I’m not drinking kefir or on a probiotic at this point. The supplement did have lots of prebiotic components at least.
But I can’t live with these SIBO symptoms forever due to fears. I did find out my reading was 54. So nothing crazy like Beth, but a definite positive diagnosis needing treatment I was told.


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