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?

Gold standard test is aspiration of fluid via endoscopy, not tissue .Some do breath test but my understanding it is not as accurate.

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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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BAM-bile acid malabsorption NET- neuroendocrine tumor. I saw Dr. Yi Qin primarily. She was great! Easy to talk to and would get back with me within hours if I had a question. I also saw Dr. John Kisiel. Didn’t spend as much time with him but he was very attentive and easy to talk to. Thankfully they were able to rule out NET/Carcinoid Syndrome. I didn’t find out which doc I was going to see until the afternoon before my appointment. I was blessed. I have seen some very minor improvements since finishing antibiotics. Sorry it took me so long to reply

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@elle1233

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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Be careful who you see. Not all people”treating “SIBO are MD’s . Some are naturopaths

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@kanaazpereira

Welcome to Connect, @wljs,

Thank you so much for your encouraging words, and for sharing your experiences in this discussion, and elsewhere on Connect too.
Please join us anytime with your questions and insights; we’re glad to have you here.

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Do you remember the doctors name and what did he find on the endoscopy how were you treated?

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@mutter3

BAM-bile acid malabsorption NET- neuroendocrine tumor. I saw Dr. Yi Qin primarily. She was great! Easy to talk to and would get back with me within hours if I had a question. I also saw Dr. John Kisiel. Didn’t spend as much time with him but he was very attentive and easy to talk to. Thankfully they were able to rule out NET/Carcinoid Syndrome. I didn’t find out which doc I was going to see until the afternoon before my appointment. I was blessed. I have seen some very minor improvements since finishing antibiotics. Sorry it took me so long to reply

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Hi, I am in the midst of dealing chronic sibo after treating with antibiotics I got cdifff. Got that fixed but now sibo is back and can’t take antibiotics. BUT….. I also have symptoms of possible neuroendocrine tumor, abd pain flushing etc tests negative so far. Who did you see at Mayo and what did they do to rule thins in or out.
Thanks
Gina

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@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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Did you actually have a neuroendocrine tumor or carcinoid syndrome??im suspecting that too? What tests did they do

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I have SIBO and Gastroparesis. I am currently on a 2 week treatment of Xifaxin. Fortunately it costs me nothing with my insurance. I use promethazine and nauzene for nausea. Nauzene is available I expensively over the counter. It has been a life saver for me. I also drink Kombucha daily which helps me feel better and also helps with good bacteria in the gut.

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Hi, I've had sibo on/off a number of years with latest recurrence in Sept – took 2 weeks of rifaximin but symptoms have not cleared – other complications include acid reflux (pH 40) & an ineffective oesophagus… unfortunately, my symptoms have deteriorated since Nov with daily vomiting, permanent bloating and constipation. Recent tests showed a clear colon but a few spots of enteritis in my small bowel. Any recommendations on above / poor motility would be great. My GI doc prescribes lanzaprazole, citalopram & Symprove (or VSL III or Alflorex)

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@gtassithomas

Did you actually have a neuroendocrine tumor or carcinoid syndrome??im suspecting that too? What tests did they do

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Datotate Pet Scan. I had a chromogranin a that was off the chart, same with gastric level. Flushing,severe abdominal pain,had a positive octreotide scan showing something on the pancreas. However, no one could ever locate the tumor. My doctors here said NET and carcinoid syndrome. I didn't believe them because without a tumor to biopsy it couldn't be proven. When the doctors at Mayo saw me they were questioning if it was NET and carcinoid syndrome. After many test the Datotate scan ruled it out. Now it's SIBO,still something up with the pancreas,BAM and a couple of other things being looked at. Thankful NET and carcinoid syndrome were ruled out.

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@gtassithomas

Hi, I am in the midst of dealing chronic sibo after treating with antibiotics I got cdifff. Got that fixed but now sibo is back and can’t take antibiotics. BUT….. I also have symptoms of possible neuroendocrine tumor, abd pain flushing etc tests negative so far. Who did you see at Mayo and what did they do to rule thins in or out.
Thanks
Gina

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Dr.Yi Qin and Dr. John Kisiel. Mostly Dr. Qin. She has been fantastic. Compassionate, professional,calls me herself doesn't have a nurse relay message. Very patient . Took a lot of time to answer my questions. I never felt rushed.

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@mutter3

Dr.Yi Qin and Dr. John Kisiel. Mostly Dr. Qin. She has been fantastic. Compassionate, professional,calls me herself doesn't have a nurse relay message. Very patient . Took a lot of time to answer my questions. I never felt rushed.

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Is she a GI md ? What was both Drs specialty? I need help with sibo too and other issues.
Thanks

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@mutter3

Datotate Pet Scan. I had a chromogranin a that was off the chart, same with gastric level. Flushing,severe abdominal pain,had a positive octreotide scan showing something on the pancreas. However, no one could ever locate the tumor. My doctors here said NET and carcinoid syndrome. I didn't believe them because without a tumor to biopsy it couldn't be proven. When the doctors at Mayo saw me they were questioning if it was NET and carcinoid syndrome. After many test the Datotate scan ruled it out. Now it's SIBO,still something up with the pancreas,BAM and a couple of other things being looked at. Thankful NET and carcinoid syndrome were ruled out.

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What is BAM? Also just be aware that G68 scans may not light up a net if it tumor doesn’t show up on scans. Did you have upper endoscopy and colonoscopy? Also if they see something on pancreas an endoscopic ultrasound of the pancreas may be able to visualize better. I’m assuming you had mri and ct . I’m only saying all this because I have carcinoid symptoms for 5 years and still trying to figure it out. I have not had gallium scan yet but plan too. Glad Mayo was thorough. Maybe I’ll make appt.

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