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Have you successfully treated SIBO?
A common story- decades-long GI problems, consulted MD's, GI specialists, others, to no avail. Reactions from "nothing is wrong" to "no idea." Original symptoms major gas and constipation, but gas abated some years ago while insomnia, sinus congestion (causing hearing and equilibrium/balance problems), fatigue, mental fog, random muscle cramps/soreness ramped up.
Much online research. Bought books by Dr. Mark Pimentel of Cedars-Sinai, also Drs. Michael Ruscio, Alison Siebecker, and Elizabeth Lipski. Looked at many GI-dysfunction websites. Learned about IMO and SIBO. Bought Foodmarble tester, actually wore the first one out after 2 years' 6/day testing, replaced it about a year ago. Also learned that antibiotics, specifically riflaxamin and neomycin, have serious drawbacks- neomycin is a broad-spectrum antibiotic, sterilizes the entire GI tract, kills both good and bad bugs, a problem from which many never recover. Paid out-of-pocket for many lab tests, including GI-MAP twice. Tried many combinations of probiotics and neutraceuticals.
My Foodmarble tester initially found methane as well as hydrogen, so the diagnosis was IMO and SIBO. Read all the blogs by Bella Lindemann, owner of the Functional Gut Clinic in Australia, and managed to cure my IMO based on zero methane readings starting 1 year+ ago, but as Ms Lindemann reveals, if you have IMO you also have SIBO. Current test readings show only hydrogen. She is the most knowledgeable source on this problem, but no longer consults with individual clients, having hired several assistants to do that. In an email exchange with her, she recommended one of her people who is on board with the Foodmarble (since it is not universally accepted), but after several expensive teleconferences I realized that this assistant was not using any specific data or test results from me, she was merely copy/pasting generic suggestions and asking the same from-square-one questions each time, so I abandoned that initiative.
My reading has revealed that there are several causes of SIBO, but a colonoscopy showed no irregularities. By process of elimination, I have concluded that the cause in my case has to be stress. Once I thought about it, I realized that stress has been a lifelong issue- I used to grind my teeth and chew my cuticles until bleeding, but never consciously. The stress likely resulted from and was furthered by 40+ years of running my own business, but even though I'm many years retired (I'm 78), the stress is so ingrained that it persists even today- it cannot be "turned off." Relaxation techniques, including various beverages such as teas and bone broths, have not helped- in fact, these days the stress is probably due to having SIBO- a vicious circle.
I'm on a greatly restricted diet, monitored by my wife, who is a credentialed dietitian. An allergy test a while back revealed nothing helpful. Currently battling insomnia using melatonin and daytime naps as well as maintaining a degree of regularity with meloxicam. Cycling through various suppleements, currently Dysbiocide and FC-Cidal. No help with the sinus congestion, which I understand is due to reaction by my immune system, so my hearing is poor- cannot have a conversation unless people shout at me. Hearing aids actually make it worse.
Of course, treating symptoms is not a cure, and since everyone's gut flora are not the same, one person's relief will not necessarily work for another. But perhaps someone reading this tale of woe has been able to tame their SIBO and that solution may be helpful for me. Thanks for reading.
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I don't believe diet was a factor for me. At least 15 years prior, I started eating only organic, was gluten free and really didn't indulge much in "junk food" (or alcohol). Aside from severe workplace stress (and recovering from childhood PTSD), my SIBO is due to impaired motility stemming from withdrawal from an SNRI; this particular SNRI was the subject of many lawsuits due to a sometimes deadly withdrawal syndrome.
Most of the neurotransmitters reside in the gut and various forms of 5-HT (serotonin) are responsible for aspects of gut functionality (including motility). It's interesting to note a Gastroenterologist I saw when I was first diagnosed (by a Naturopath) told me that a significant number of his patients suffer gastrointestinal issues while either on antidepressants or from withdrawal. In any case...
I've benefitted a bit from protocols and recommendations by Dr Siebecker, (leading SIBO physician and researcher); Dr Pimentel, and others; based on their websites, podcasts, papers, etc. I worked with a Naturopath initially and then a Functional Nutritionist years back. Only over the last 6 months or so was the motility issue broached when I started seeing a Gastroenterology specialist (for symptoms that seemed atypical of SIBO but I suspect are related).
It's quite unfortunate if not tragic for some of us, that most of "mainstream" medicine is not informed about the latest SIBO research (done by Dr Pimentel and his team at Cedars Sinai); I've gotten (bad) advice ranging from take laxatives and PPIs and probiotic strains known to feed methane SIBO. They advertised "SIBO Practitioner" but are sorely ignorant about not only the complexities/types but the actual research on this condition.
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3 ReactionsI couldn't agree more with what you are saying about the medical community, though I do think food is a part of things for me. I'm seeing a physician in Pimental's practice currently. I've also read the others you mention and consulted with Lindeman's clinic (assistants). I also have a naturopath in addition to my "western" GP. I never took antidepressants (very short trial very long ago and way before SIBO). Have you found magnesium and liposomal vitamin C helpful for the constipation? The push toward PPIs etc is rampant. How are you doing now and what are your major protocols if any?
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2 ReactionsDr. Pimentel's research is not specifically focused on IMO/ SIBO. His book, published a year or two ago, discusses a wider range of GI ailments. That said, he may be in the best position to identify a "silver bullet" treatment protocol. Treatment is difficult because there are varying causes for different individuals and everyone's gut flora are different. There are thousands of strains of bacteria. It's worth noting that most strains are not intrinsically "bad" or "good" but have metastasized in the wrong location- the small intestine. (Notice my use of "most").
If you have IMO, you also have SIBO, because the methanogens that comprise IMO need the hydrogen produced by SIBO to survive. You may well be able to dispel IMO, which tends to stay gone; often supplements containing garlic can make that happen (I used Allimax). But SIBO is a tougher customer, and you need to identify and, hopefully, deal with the underlying cause to vanquish it completely.
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2 ReactionsI'm very much aware Dr Pimental's research is not specific to SIBO/IMO and that his research is very comprehensive regarding GI ailments. Nonetheless, since I was speaking about "my" experience" I made reference to only that.
There is not indeed a "silver bullet" - if that was the case, I daresay he and many others would be a billionare. That said....
I'm very much aware/educated about the complexities of the microbiome - and that bacteria is neither good nor bad - and that SIBO is about their residence where they don't belong (small intestine). Hence the name "Small Intestinal Bacterial Overgrowth".
Yes indeed I know I have SIBO -C (not just IMO) (ref the hydrogen, etc. you mentioned) - yes, Allicin for methane, and for sure I'm aware it's tough (been dealing with it for 5 years at least). In addition to Allicin, there are other antimicrobials (and Rx combos) that do work well - I've managed remission for months at a time. However...
...there are other variables that factor into the irradication of SIBO-C and as well, treatment approaches (which I mentioned in my response to "caroljmelville" below.
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1 ReactionYes, I've found magnesium and vitamin C helpful to an extent (for SIBO-C constipation). I added two new things recently that seem to be helping: BioGaia Gastrus (L-reuteri probiotic) one of the few specficially recommended for archea-producing bacteria (methane); and SunFiber (prebiotic) which is also recommended for SIBO-C (other prebiotics are contraindicated).
Meanwhile, it was confirmed by a microbiome test and a practitioner that my microbiome is rather imbalanced at this point; most likely due to repeated rounds of antimicrobials over the years. It seems like the approach to treatment is shifting a bit as the SIBO/IMO/SIFO research progresses - in particular the work of Dr Jason Hawreluk. Whereas they used to caution against probiotics (at least in the early stages of treatment), I'm reading more and more that adding very specific strains of probiotics (depending on the type of SIBO) are key at the right stage of treatment - or even in place of antimicrobial agents.
Given your work with Pimental's associate and Lindemann, I imagine you're familiar with motility agents; Motilpro seems to work and also Iberogast intermittently Moreover, recently, my Gastroenterologist prescribed Prucalopride (Rx) which is a 5-HT 2A (specific type of serotonin) agonist that stimulates the bowel - haven't tried it yet as I'm concerned about creating a dependency.
For antimicrobials, I use Allimax Pro and Neem (Oregano Oil is very effective however, lately it's too irritating.) I tried Rifaximin with Metronidazole once as well. Both of these "kill" methods worked for a month or so but eventually, the symptoms returned as the SIBO is not gone entirely (confirmed by a breath test).
At this point, I'm in the process of finding a professional to work with to establish / maintain a program and some consistency that includes all the above; I suspect this will be most effective (rather than my own intermittent, often reactive approach).
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3 ReactionsWow, this is so helpful - and yes, I was prescribed Prucalopride - but also haven't tried it for the same reasons you provided. I haven't heard of Dr. Jason Hawreluk, but will look him up. And I will look into BioGaia Gastrus and SunFiber, which has been recommended to me in the past, but I wasn't sure. Wondering about your microbiome test... how was that done and by whom? I have also tried Oregano oil and found it too irritating. I did do a round of the Rifaximen and something other than the Metronidazole, which I can't take due to a family history of allergic reaction to similar class drugs... and found the same resurgence of symptoms afterwards. Where are you located? I'm in the Southern California area. Thank you so much for the information you provided. Btw, the forms of magnesium and liposomal vitamin c have been important for me - as my digestive system had a difficult time with previous forms and they are now working well most of the time.
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1 ReactionHello again!
Regarding your Rifaximen treatment, you may have taken Neomycin - that's the standard treatment but the potential side effects concerned me, so I tried Metraonidazole instead.
I took the Biomesight Microbiome Test and ordered it myself online: https://biomesight.com/index. The results/report is rather comprehensive with very detailed analysis and recommendations for each finding (diet, probiotics, prebiotics, supplements). However, some of their suggestions are not quite aligned with SIBO research and protocols. There are only a handful of practitioners that have a certification for it; I almost worked with one but, among other issues, found her SIBO knowledge to be inadequate. The thing is...
Although it's true SIBO is a form of microbiome dysbiosis and other areas/types of microbiome can contribute to/worsen, and may even be the cause of SIBO and other gastrointestinal issues, if one has SIBO, that needs to be addressed - and rather specifically (based on the relevant, most current research, Pimental et al. and others).
So I'm trying to find someone who is experienced, well-trained, and current on SIBO but also includes consideration of the microbiome generally and has some kind of protocol to address it. I figure they can utilize my Biomesight results to further inform their treatment recommendations.
I'm in New York - the state where getting some holistic/functional tests is not allowed legally. For sure, your State, Washington and Oregon are where the wealth of knowledge and research comes from; and as well Australia (Jacobi, Hawrelak, Lindemann). https://www.probioticadvisor.com/about-us/dr-jason-hawrelak/
Hawrelak has a clinic with practitioners that do Telehealth - even to the US, however, for me the time difference is an issue - I'm not a night owl and I found their hours to be prohibitive. Same reason I haven't tried Lindemann.
In any case....glad to confer with a "fellow traveller" 🙂
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2 ReactionsI've used the various meds you mentioned, and have managed to dispel my own IMO, but the underlying SIBO remains. If you come across a qualified SIBO practitioner, please let us know here. We're all ears!
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3 ReactionsLooks like we've been down similar roads. My comment re "silver bullet" was metaphorical, since everyone's case is different. Perhaps by sharing experiences we can make some headway.
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3 ReactionsFrom my own experience and that of another's post here, Lindemann's clinic has been less than helpful in spite of Ms. Lindemann's understanding. That body of knowledge has apparently not been sufficiently passed on to her assistants, who do the actual consulting. Cost me considerable $ before I realized that.
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