Sibo treatment Rifaxamin and Neomycin

Posted by azj @azj, Oct 1, 2022

I have been diagnosed with SIBO and am being advised to take Rifaxamin 3x a day and Neomycin 2x a day for 14 days. I have many concerns about the Neomycin due to the ototoxicity. I have a bit of tinnitus already the think that may make me more vulnerable to a possible problem. The idea of taking something that might hurt my hearing even more is concerning. Any thoughts about the Neomycin in this context? I would like to hear about the research and if genetics can be determined to see if this would be safe for me to take.
Also, does anyone have any recommendations for a Dr. at Mayo/ Scottsdale who treats SIBO? I would like to coordinate care with my other doctors at Mayo as I think this is going to be essential to getting a handle on this.
Much gratitude in advance for this supportive community.
Take care,
Jaki

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Profile picture for helenrose @helenrose

Does anyone have suggestions what to do after taking xifaxin and neomycin together for 2 weeks?
Also my doctor is having me take xifaxin 2 times a day and neomycin 3 times a day. I have the methane type of Sibo. My doc said the main thing re neomycin is to stay hydrated as it has an effect on the kidneys. Thanks.

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Have you investigated mast cell activation? It was the underlying cause of my daughter's Sibo.

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No not yet. My doctor wants to see how I do after the 2 week treatment. I am working with a nutritionist to add back prebiotics, etc. I don't know if my doctor will do that or even what mast cell activation is. I have heard about it on this forum. Thanks.

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Profile picture for helenrose @helenrose

No not yet. My doctor wants to see how I do after the 2 week treatment. I am working with a nutritionist to add back prebiotics, etc. I don't know if my doctor will do that or even what mast cell activation is. I have heard about it on this forum. Thanks.

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It is possible that your doctor does not know anything about mast cell activation. It might be worth your time to investigate. My daughter went to at least 2 gastro docs and neither ever mentioned it. It has not been a recognized diagnosis for many years.

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Profile picture for johnbluffside @johnbluffside

I will not take neomycin either. Unfortunately the studies show most SIBO comes back after taking these.
Extreme bloating and feeling horrible are most peoples concerns and symptoms while on them .
Everyone says get to the root. That could be so many things you don’t have control over like repeated antibiotics etc.
a functional Dr wants extreme strict diet to starve the SIBO but a registered dietician will tell you you are restricting too many calories, nutrition and it will come back .
Two GIs say too many false positives even in a hospital lab test for accurate SIBO results.
Some say hit with probiotics some say very little effect.
Then throw in the acid problem and they all want you to take PPI and the long term effects are horrible and very hard to get off of.
If I knew Mayo had the answer I would be there tomorrow. I haven’t read anyones success from them .
I wish I knew.
Keep asking keep pushing you are your best advocate. If you don’t call for apt they assume you feel great!
Not enough good doctors I called my GI and next apt is in February .. 4 months out!!!

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I totally agree with your approach and I have the same condition so I understand. I had my first experience with SI BO last fall. Got on Xifaxan and got relief by taking only 2 doses daily for 12 days. But I was not told to change my foods and menus. I keep a daily detailed food and GI reactions to foods, bowel responses, etc. Now I'm better equipped to maintain a calmer GI. It's very tough to control. I'm extremely sensitive to all sugars both added and natural sugars found in "healthy" choices. My menu consists of protein from eggs, fish and chicken, no dairy, complex carbs (rice, kasha, white potatoes, oats, some pasta). I have a particular problem with acid producing foods and all uncooked vegetables. I'm searching for a dietitian currently and hope to try my best to concentrate on this positive run. No spices except dried or fresh herbs, and that is boring but better than being sick everyday. Last month I found that my GI doctor got the Xifaxan rep to supply me with 14 days worth of samples. So press your doctors to do it for you. I'd be happy to share any other details and discussion with you all. One more thing... I take a special probiotic that I subscribe to called Probulin Colon Support, I helps me quite a lot by keeping health bacteria in my colon 24/7.

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Profile picture for rjgess @rjgess

My Dr wrote the ins. A letter. Treatment is cheaper than hospitalization and or surgery. They now pay for it It needed to be prescribed as a maintenance drug in my case.

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Hi, My doctor got the drug rep for Xifaxan to supply me with a full 14 days with free samples!! Good for you, too!

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Profile picture for tr468 @tr468

There is a canadian pharmacy that sells it for $250. https://www.truecanadapharmacy.com/

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Get your doc to contact the drug rep for free samples. I recently got 14 days for free!! Bug you doc to do it!!!

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My daughter was diagnosed with mast cell activation, which was the underlying cause of recurring SIBO, by Dr Brent Goodman at Mayo Scottsdale. He is a neurologist. She saw a gastro doctor first who referred her to Dr Goodman. He diagnosed POTS and Ehlers Danlos as well

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Profile picture for eileen57 @eileen57

Get your doc to contact the drug rep for free samples. I recently got 14 days for free!! Bug you doc to do it!!!

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I thought that doctors had been forbidden by law to give out free samples of medication.

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I made the mistake of taking neomycin and now my ears are screaming all the time! Does anyone know what can be done for this?

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Profile picture for johnbluffside @johnbluffside

I will not take neomycin either. Unfortunately the studies show most SIBO comes back after taking these.
Extreme bloating and feeling horrible are most peoples concerns and symptoms while on them .
Everyone says get to the root. That could be so many things you don’t have control over like repeated antibiotics etc.
a functional Dr wants extreme strict diet to starve the SIBO but a registered dietician will tell you you are restricting too many calories, nutrition and it will come back .
Two GIs say too many false positives even in a hospital lab test for accurate SIBO results.
Some say hit with probiotics some say very little effect.
Then throw in the acid problem and they all want you to take PPI and the long term effects are horrible and very hard to get off of.
If I knew Mayo had the answer I would be there tomorrow. I haven’t read anyones success from them .
I wish I knew.
Keep asking keep pushing you are your best advocate. If you don’t call for apt they assume you feel great!
Not enough good doctors I called my GI and next apt is in February .. 4 months out!!!

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I agree 100% with you. It’s all so confusing and contradictory. You would think in this day and age someone would be able to help. Keep trying hugs.

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