Small Intestine Bacteria Overgrowth (SIBO)

Posted by jacque6977 @jacque6977, Feb 22, 2017

My wife, after years of suffering from debilitating nausea and fatigue, has finally been diagnosed with SIBO as confirmed by a hydrogen breath test. It is estimated the bacteria has had at least two years to grow and may be well established. She has started on Xifaxan, at $35 per pill, but it is estimated that elimination of the SIBO may take up to six months. Her day now starts with her waking up with nausea and when she has a cup of tea and toast in the morning she gets sick within fifteen minutes thereafter. Her sickness is accompanied by violent belching, and at times she regurgitates liquid vile. The only drug she has for nausea is Zofran which does nothing for her. Are there any other SIBO sufferers that are experiencing the same symptoms, and what are you taking to reduce the nausea?

@mutter3

I was diagnosed with SIBO yesterday. Now I get the pleasure of doing the test for BAM. Luckily I get to do this one at home. I feel vindicated and hopeful. I have suffered with SIBO for close to 10 years. When I went to Mayo it was for like a 7th opinion. I was told at home I have a NET and carcinoid syndrome and to think about palliative care. The doctors at Mayo,yea Dr. Qin, were phenomenal. I now have answers. Levaquin for a while and after the BAM test I'll start the SIBO diet. To find the diet ,Google Mayo SIBO diet. I wish you each the best quality of life. Something I thought was gone but now have hope for. Thank you Mayo Clinic Rochester!!!!!!!!!!!!

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I'm so glad I came back here.. I'm so anxious to talk to others with SIBO diagnosis! First off, what is BAM, and NET?

Which Dr. did you see at Mayo? I was diagnosed with SIBO at Mayo by the Dr. who did my endoscopy (via the duodenal aspirate), which is considered 'gold standard'. Sadly the Dr, who is a fellow; who was assigned to my care doesn't seem to believe in it, and when I asked to do the treatment protocol for it, he got all huffy; so I'm now without a GI doc, have gotten a local friend to write prescription for me to treat myself best I can based on the literature. I asked the GI dept if they had a doc that was familiar with SIBO, and never got an answer. I'd like to see one if they exist since I've had all my testing there. Otherwise I'm looking into Johns Hopkins, the only SIBO center I can find that takes out of state patients.

Do you have Carcinoid tumors also?

How did the Levaquin work (i'm assuming maybe you finished that now). I haven't taken that one! Look forward to hearing from you!

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@eden @elle1233 @colleenyoung
My first thought when I read about being lightheaded 2 hrs after a meal was a possible connection to the blood sugar/ insulin levels. @eden– have you had any specific lab testing for this?

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Sorry that you are experiencing light headedness after eating, Eden. I was recently diagnosed with a very painful bout of diverticulitis. Was prescribed two very strong antibiotics along with initial liquid only diet. On the 5th day of antibiotics, I began having dry heaves and a very sharp, sudden drop in blood pressure which left me very dizzy and lightheaded. I knew the b.p. drop was due to an earlier diagnosis of orthostatic hypotension which occurs when some people go from sitting to standing or vice-versa. The divert. was diagnosed because of extreme abdominal pain but once on the mend no further muscle soreness. So my situation and diagnosis were different from yours. Sincerely hope you'll keep seeking help and answers.

Liked by elle1233

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@astaingegerdm

@eden @elle1233 @colleenyoung
My first thought when I read about being lightheaded 2 hrs after a meal was a possible connection to the blood sugar/ insulin levels. @eden– have you had any specific lab testing for this?

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Yes, I too am wondering about the lightheadedness being due to blood sugar and insulin levels. This was my first symptom when I became borderline diabetic. I would feel very lightheaded and a bit dizzy 2 hours after eating because my blood sugars had shot up, but then if I didn't eat for another hour or two, I would be getting low blood sugars and the shakes.

Liked by elle1233

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@astaingegerdm

@eden @elle1233 @colleenyoung
My first thought when I read about being lightheaded 2 hrs after a meal was a possible connection to the blood sugar/ insulin levels. @eden– have you had any specific lab testing for this?

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Right Ingegerd – this is certainly a more likely possibility, which is why I think @eden SHOULD continue to bring this up with her/his Dr., but not immediately attribute it to SIBO.

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@fiesty76

Might be better placed in another group, but just read this article from Livestrong and thought it might prove helpful to some dealing with kidney and digestive issues:
https://www.wellandgood.com/good-advice/what-is-sibo/

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I'm a little late, but thanks fiesty!, this was a good article, although I'm always sad when I read these, b/c MDs who are knowledgeable and specialize in SIBO all seem to be on the East or West coasts… no one anywhere near me. 🙁

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@jamorris9

Yes, I too am wondering about the lightheadedness being due to blood sugar and insulin levels. This was my first symptom when I became borderline diabetic. I would feel very lightheaded and a bit dizzy 2 hours after eating because my blood sugars had shot up, but then if I didn't eat for another hour or two, I would be getting low blood sugars and the shakes.

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Thanks for sharing your experience – hopefully @eden will see these comments and suggest this possibility to her MD, if it hasn't already been addressed. Definitely should be checked into!

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My husband suffers from constant diarrhea which was originally diagnosed following colonoscopy and biopsy as collagenous colitis. His doc put him on pepto bismol which worked for three years with regular flares. Eventually pepto stopped working. He went to another Gastro and had another colonoscopy and biopsy no longer showed collagenous colitis. This doc assumes it’s SIBO and prescribed the only antibiotic that works for this. Insurance does not cover this drug and cost is over $1000 for 14 days. This is just a trial and error approach. If he improves the assumption is it’s SIBO. If not they’ll try another round of antibiotics. Is there a reliable way to diagnose SIBO? From what I’m reading online this is a controversial diagnosis that some docs don’t believe in. Anyone have Experience with treatment for SIBO?

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@cim37343

My husband suffers from constant diarrhea which was originally diagnosed following colonoscopy and biopsy as collagenous colitis. His doc put him on pepto bismol which worked for three years with regular flares. Eventually pepto stopped working. He went to another Gastro and had another colonoscopy and biopsy no longer showed collagenous colitis. This doc assumes it’s SIBO and prescribed the only antibiotic that works for this. Insurance does not cover this drug and cost is over $1000 for 14 days. This is just a trial and error approach. If he improves the assumption is it’s SIBO. If not they’ll try another round of antibiotics. Is there a reliable way to diagnose SIBO? From what I’m reading online this is a controversial diagnosis that some docs don’t believe in. Anyone have Experience with treatment for SIBO?

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@cim37343, I moved your message to this active discussion group where members are talking about SIBO and treatment options. Click VIEW & REPLY to scroll through past messages. What is the antibiotic that your husband is taking? Is it helping yet?

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@elle1233

Right Ingegerd – this is certainly a more likely possibility, which is why I think @eden SHOULD continue to bring this up with her/his Dr., but not immediately attribute it to SIBO.

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@elle1233 – It is very confusing when you are dealing with different health issues. I was first told about SIBO 13 years ago- after that other GI and health issues developed, including beginning of “pre-diabetes”. I know the weak feeling 2 hrs after a meal- rarely now since I adjusted my diet. SIBO in itself can make me feel really ill.

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@cim37343

My husband suffers from constant diarrhea which was originally diagnosed following colonoscopy and biopsy as collagenous colitis. His doc put him on pepto bismol which worked for three years with regular flares. Eventually pepto stopped working. He went to another Gastro and had another colonoscopy and biopsy no longer showed collagenous colitis. This doc assumes it’s SIBO and prescribed the only antibiotic that works for this. Insurance does not cover this drug and cost is over $1000 for 14 days. This is just a trial and error approach. If he improves the assumption is it’s SIBO. If not they’ll try another round of antibiotics. Is there a reliable way to diagnose SIBO? From what I’m reading online this is a controversial diagnosis that some docs don’t believe in. Anyone have Experience with treatment for SIBO?

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My consultant diagnosed SIBO by the hydrogen breath test. The protocol here is to try different antibiotics on a rolling basis. The final one is very expensive, but still provided by the NHS. They didn’t work so I was put onto the FODMAP diet. It’s not easy to follow but it began to work after about a month. I still adhere to it as much as possible and have only occasional flare-ups after about two and a half years. Hope this helps.

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@elle1233

I'm so glad I came back here.. I'm so anxious to talk to others with SIBO diagnosis! First off, what is BAM, and NET?

Which Dr. did you see at Mayo? I was diagnosed with SIBO at Mayo by the Dr. who did my endoscopy (via the duodenal aspirate), which is considered 'gold standard'. Sadly the Dr, who is a fellow; who was assigned to my care doesn't seem to believe in it, and when I asked to do the treatment protocol for it, he got all huffy; so I'm now without a GI doc, have gotten a local friend to write prescription for me to treat myself best I can based on the literature. I asked the GI dept if they had a doc that was familiar with SIBO, and never got an answer. I'd like to see one if they exist since I've had all my testing there. Otherwise I'm looking into Johns Hopkins, the only SIBO center I can find that takes out of state patients.

Do you have Carcinoid tumors also?

How did the Levaquin work (i'm assuming maybe you finished that now). I haven't taken that one! Look forward to hearing from you!

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I've had surgery for obstructions. In the last surgery they took out illeocecal valve, appendix and a piece of large and small intestines. I was then introduced to SIBO. Two flare ups in the last year
The only treatment that worked was XAFLAXIN and flagl together
Local GI doc prescripted colestapol which did nothing
I started out with damaged GI system from BAND and subsequent RNY bypass. Hope this helps

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@colleenyoung

@cim37343, I moved your message to this active discussion group where members are talking about SIBO and treatment options. Click VIEW & REPLY to scroll through past messages. What is the antibiotic that your husband is taking? Is it helping yet?

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Rifaximin is the prescribed antibiotic but doc is still working with insurance to get it covered. So he hasn’t started it yet. No breath test has been administered to diagnose SIBO so this very expensive antibiotic is being used for diagnostic purposes – trial and error approach. I am also confused how his last GI doc diagnosed collagenous colitis and this new doc said the biopsy didn’t show that. I’m wondering if anyone else has had this diagnosis reversed.

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@cim37343

Rifaximin is the prescribed antibiotic but doc is still working with insurance to get it covered. So he hasn’t started it yet. No breath test has been administered to diagnose SIBO so this very expensive antibiotic is being used for diagnostic purposes – trial and error approach. I am also confused how his last GI doc diagnosed collagenous colitis and this new doc said the biopsy didn’t show that. I’m wondering if anyone else has had this diagnosis reversed.

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There seems to be so much confusion in this area. My consultant had done a lot of research – it’s her special field. She administered the breath test, then used four different antibiotics on a rolling programme over a period of four months – two weeks on two weeks off. They weren’t a diagnostic tool as far as I understand it. When they didn’t work she moved me onto the FODMAP diet. Apparently, according to the research statistics, a considerable proportion of SIBO sufferer will not benefit from antibiotics anyway. There is only one definitive test at the moment, it seems.

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WHAT IS THE ONE DEFINITIVE TEST? I TRIED THE FODMAP DIET IT DIDNT WORK FOR ME. HOPE IT WORKS FOR YOU.

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