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?

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fran0529 | @fran0529 | Mar 19 2:07pm

In reply to @gussie "My next step, my gastro said is to try Xifaxan. If you are on Medicare how..." + (show)

I WAS BEING TREATED BY AN APRN WHO WAS ABLE TO SECURE FOR ME TWO ROUNDS OF XIFAXAN FROM THE DRUG COMPANY AT NO CHARGE TO ME. YOU SHOULD ASK YOUR DOCTOR OR APRN TO SECURE SIMILIAR ROUNDS FOR YOU. FYI I DID NOT FEEL SIGNIFICANTLY BETTER AFTER MY TWO ROUNDS BUT OTHERS HAVE HAD BETTR RESULTS.

blbanner | @blbanner | Mar 19 4:13pm

In reply to @skacolca "Have you been breath tested for any food intolerances like fructose or lactose? Once you have..." + (show)

I seem to have symptoms of secondary lactose intolerance for sure. I thought about getting allergy tested because I heard the blood draw for intolerances is not that accurate. I should look into the breath tests. I did it for SIBO last summer and tested positive. Thank you!

blbanner | @blbanner | Mar 19 4:16pm

In reply to @gussie "My next step, my gastro said is to try Xifaxan. If you are on Medicare how..." + (show)

I have UnitedHealthcare which is an HSA, and they only approve it every 6 months. Horrible! I’ve heard of people (on here) saying they take it continuously, and unless they’re insanely rich to be able to pay for it out of pocket, I can only assume they are on an insurance that approves it. I’m currently tackling that issue. However, Flagyl is a great alternative to Xifaxan, even though Xifaxan is the best for you. I would also recommend asking your doctor to put you on a round of Diflucan, which is an antifungal. Taking the antibiotic for SIBO and the Diflucan has made me feel nearly back to normal.

bonez3861 | @bonez3861 | Mar 19 9:10pm

I am on a feeding tube into my small intestine and I get sibo infections all the time. I have barrett's esophagus, gastroparesis, gastritis, malabsorption and my esophagus is very tight. I also have chronic pancreatitis. Plus other problems. I have 2 types of neuropathy. My gastroenterologist has to do an egd and EUS with biopsies and a celiac block to my pancreas nerves every 2.5 months for the last 5 years. We have tried so many different things for my SIBO. We are currently trying cipro and Flagyl 10 days of every month. But I don't know that it is helping. I have chronic nausea and vomit bile alot. I take 8mg of Zofran all day long. Not every so many hours. Sometimes I take 4 an hour. Sometimes it helps and sometimes it doesn't. I wish I had better answers for you but I honestly don't think the doctors know what to do. Good luck and you have all my Love and prayers ❤️🙏❤️🙏❤️🙏❤️🙏 if you find something that works please let me know. It is very disabling.

rsy | @rsy | Mar 20 6:17am

In reply to @gussie "My next step, my gastro said is to try Xifaxan. If you are on Medicare how..." + (show)

Go to: canadaprescriptionsplus.com website. Contact them via phone…friendly staff. Your doctor will have to fax your prescription to them. My Rifaximin prescription for 50 tablets was $66.20 including postage. You will have to pay with a money order. Be sure to mail the money order with an international stamp to speed up the process. The whole process will take about 3 weeks, but best price I could find. Good luck, hope u feel better!

gigi4 | @gigi4 | Mar 20 10:38am

In reply to @gussie "My next step, my gastro said is to try Xifaxan. If you are on Medicare how..." + (show)

I had SIBO for quite some time before changing doctors 3 times to find one who knew how to test for SIBO. I can tell you that I took Xifaxan and like all PPI's once I was off, the symptoms return. They return because most doctors have it wrong - we need acid to digest, not block it. PPI's and other antibiotics treat the symptom. Symptoms return once you go off the PPI or antibiotic. Read through this thread and you will find some suggestions - I started with a prebiotic and a probiotic, eventually going off the prebiotic after testing and then eventually off the probiotic after testing, took Dr. Shade's Bitters #9 ten minutes prior to eating and taking slow deep breaths to get the digestive juices flowing, Low Fodmap can be helpful but you also need to find foods on that list that you can tolerate as it can be a very restrictive diet (example: I love avocados and continued to eat them without any effects), I also went gluten free as gluten is a digestive tract disruptor and upsets the microbiome (you'd be surprised how many gluten free products there are now and they actually taste good - Udi's bread, gluten free pastas, etc., - dairy free and eventually slowly adding in one product at a time to see if I could tolerate it, drink Kefir and eat other fermented foods such as pickles (but only from the refrigerated section to keep it from spoiling, and sugar free (using organic Stevia instead in coffee and tea). It's a process and takes time and consistency to get to feeling better and rid yourself of the SIBO. And then, highly important - don't discontinue eating the right way - gluten free, dairy free except what you can tolerate and sugar free as much as possible (check ingredient labels and look at the percentage of sugar. I shoot for 10% or less. It is quite amazing how much added sugar there is in products. If 10% or less is not to my liking of a product, I will add in some Stevia to help.
Best of you!

gussie | @gussie | Mar 20 12:12pm

In reply to @gigi4 "I had SIBO for quite some time before changing doctors 3 times to find one who..." + (show)

@gigi4

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Thanks gigi. I am 82 and have had IBS-D for over forty years. I also have a rare condition called CVID. Common variable immunodepression. Also called "Boy in the Bubble Disease" I don't make normal antibodies to viruses and bacteria. I do infusions of IgG blood plasma every week to get other peoples antibodies. IgG is one part of gammaglobulin. I am also low on IgA which has to do with the GI system. For some of us with this disease we have trouble with our GI, and some of us with lungs or sinuses or autoimmune diseases to go alone with it. I have been GF for 13 years and mostly dairy free. I had a SIBO breath test about six years ago and it came up I was making methane gas which usually goes with constipation, not diarrhea so that doesn't seem to apply to me. I also have gastritis, hiatal hernia, and diverticulosis. I even have an app in my car called We Can't Wait, and believe me I've had to use it. I will take some of your suggestions.

cgper | @cgper | Mar 21 4:02pm

Dear Gussie,

You mentioned a hiatal hernia. I have one that cramps all the time and makes me regurgitate even water. I feel a stabbing pain going towards my spine. Most of the time I feel like a have a pit in the pit of my stomach. So trying to explain this to the doctor, ended up in explaining my pain as a knot in the pit of my stomach. Bingo! I was referred to psychiatric care. I suffer from anxiety but I think this knot I feel is not anxiety. Any suggestions?