SIBO/IMO breath test results

A site with a lot of good info: https://www.siboinfo.com/

@sm80 Thanks! I've seen a few of Dr. Siebecker's podcasts on youtube but had not seen her website. I see she works with Dr. Pimentel, a very good sign.

Much to my surprise, my insurance denied prior authorization of Rifaximin - hoping my GI doc can get that appealed. I also freaked out a little (is it possible to freak out "a little?") at the potential ototoxicity of Neomycin since I just did a hearing test (with mild high-frequency hearing loss) and VNG study showing normal but with subclinical abnormalities re dizziness and vestibular function. I had a talk with my ENT doc yesterday, and I think I just need to suck up my anxiety and take the meds. I've taken Flagyl before and had nasty nausea with it, so it's just choosing our poison I think. And the nastiness of the IMO has to be dealt with.

Unfortunately Rifaximin is not approved for SIBO. it is used off label so insurance will not cover it.

@samclembeau Well that's insult to injury! Thanks for the info.

Hi everyone. I am new to this group. I have IMO (formally methane SIBO). I am an engineer by training (hospital based) and have extensive experiencing reviewing medical literature. I recently completed a 2 week course of rifaximin and neomycin without success (actually a little worse)
Because of my experience I was motivated to take a deep dive into the available literature of conventional medicine treatment guidelines to try to make sense of the treatment options. I used the american gastroenterological association (AGA) guidelines. I have not taken a deep dive into the alteratives, e.g., herbals. Below is my personal take on what is known and what is not.
As a general note much of the guidelines are based on a very small number of clinical studies and leave a lot to be desired for quality and interpretation.
For starters the AGA does recommend rifaximin/neomycin in combination for people who test positive for IMO on standardized breath tests. The duration (usually 2 weeks) can be extended based on the severity of the test results. The addition of neomycin to the protocol is based on some fairly small studies that indicate that the two antibiotics can acheive an 85% success rate (based on repeat breath tests) compared to only about a 30% success rate for rifaximin alone. The studies do not address the number of people who will achieve normal breath tests, but will require additional treatments. The number of people who require repeat treatments is much more difficult to source, but it seems to be between 40-60%. In the real world most people who relapse, or failed the initial course of treatment, do not receive a follow-up breath test which is in accordance with AGA guidelines. The bottom line is that it is virtually impossible based on available information to make a a solid informed decision about the efficacy of these treatment protocols in my opinion. As for neomycin side effect concerns, that is even murkier. As far as I can ascertain there are only two small study demonstrating the ototoxicity for orally administered neomycin. One study involves children, the other adults. The adult study included 30 subjects, two of whom developed hearing loss (6.6%). Virtually all of the other information documenting ototoxicty from neomycin is from studies where neomycin was administered either I.V. or topically. In those studies, pre-existing hearing loss and age seem to increase the chances of neomycin induced hearing loss. The AGA says 95% of neomycin is confined to the GI tract. I have no idea what to conclude from that number on how it correlates to the information from the above mentioned studies.
I recently purchased a home breath test analyzer from a company called foodmarble (aire2). This analyzer measures both methane and hydrogen. I do not know how well this device compares to the clinical devices used in hospitals and other settings. I purchased the device to begin to collect data on my own scores and see if I can track how effective my own interventions are, e.g., diet, supplements, etc. The manufacturer has data that as far as I know is not publicly available (hopefully some day).
My conclusion is that the treatment of IMO is based on a very small and inclusive body of information and that additional clinical trails are desperately needed. I have searched online for ongoing clinical trials and there does not seem to much going on in this area as best as I can tell.
That's my conclusion. I would love to get some reactions and thoughts.

@bosman I've been reading about the FoodMarble - what's your opinion about it so far? At >81 ppm methane and a history of neurologically based dysmotility I suspect that getting my IMO under control will take quite a fight. I was wondering if the FoodMarble could be a useful tool for me after treatment, in terms of figuring out which foods are problematic for my gut and which are likely ok.

Beyond the work of Mark Pimentel at Cedars-Sinai, I agree that treatment outcome research is limited.

At this point I cannot give you a good answer to your question. I've had it for about 10 days and I am still experimenting with how best to use it. I am just beginning the reintroduction stage of the low fodmap diet so hopefully I will have more information as I reintroduce foods. The device has confirmed that my methane levels are high even first thing in the morning. The numbers sometimes correlate with my symptoms, but it's inconsistent. I wish I had the device during my antibiotics course because it would be interesting to monitor the levels thoughout the two weeks. Sadly, the antibiotics did not do the trick for me. I hope your treatment is successful and you're feeling better. If you can afford it I think it's a worthwhile investment if only to determine whether your levels come down with treatment.

Have any of you in the U.S. used a Canadian pharmacy to get your Rifaximin? My doctor is working on an appeal (Insurance denied prior authorization), but if the appeal is unsuccessful I don't really have $2800 for one round of treatment.

It's unfortunate that the first-line treatment for IMO includes a drug that has never been FDA approved to treat it. It's an easy insurance denial - a drug that is being used off-label.

Canada has different patent arrangements with drug companies than the U.S. does, and they have a generic Rifaximin. I've never tried to order from a Canadian pharmacy so just wondering if anyone here has.

@jacqincalifornia
Hi,
I did not buy my Rifaximin in CA (my appeal was approved) but I did use a Canadian pharmacy for Motegrity. (Prucalopride) I used Marks Marine Pharmacy in Vancouver. Now I’ve got insurance coverage for both for which I’m very grateful.

@mrsflutterby Thanks very much for your post. I have a friend, retired doctor, who said that one of her patients used Marks Marine successfully. I've also been researching Northwest Pharmacy in Langley B.C. I really hope my doctor's appeal will work because then the Rifaximin would cost me $44.00. But it's good to know that there may be other options. I see that prior authorization will also be needed by my insurance company for Motegrity. Oh joy.

Thanks again.