Have you successfully treated SIBO?

Posted by geezer7491 @geezer7491, Aug 21 10:14am

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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Profile picture for geezer7491 @geezer7491

My thanks to all who posted. To those who suggested food sensitivities, I believe I put that theory to bed some time ago- I ate nothing for 24 hours and saw zero difference in breath hydrogen levels, on that day or subsequently, from any of my 6-a-day breath tests.

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I am now convinced this SIBO thing and its corollary testing, are a bit of a sham. Esp. when you also have docs who want to treat you with naughty drugs because "there are too many false negative results." So many folks in this group have spent a good deal of wasted money, all for no good, as SIBO repeats itself, like the common cold.

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Profile picture for bkatz43 @bkatz43

I am now convinced this SIBO thing and its corollary testing, are a bit of a sham. Esp. when you also have docs who want to treat you with naughty drugs because "there are too many false negative results." So many folks in this group have spent a good deal of wasted money, all for no good, as SIBO repeats itself, like the common cold.

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SIBO and IMO are definitely not shams. The basic problem is that SIBO results from different causes for various individuals, and the medical community is sorely lacking insight- many doctors have still not even heard of these conditions, and thus have no solutions. Other doctors swimming in this sea of ignorance prescribe treatments they hope will work as a shot in the dark. At this point in my own case, I've found that I know more about it than the doctors I've consulted. This leaves an open field for all manner of charlatans looking to make a buck.

A woman in Australia, Bella Lindemann, runs a clinic that focuses on IMO and SIBO and she has the best understanding of anyone I've found, but she no longer works with individual clients. She has posted multiple videos, writes a blog, and has assistants who conduct teleconferences worldwide. I tried that route until I realized that my assistant was providing just copy-and-paste generic advice, some unrelated to my own case- cost me several hundred $ before I pulled the plug. If you read her blogs you should come away with a deeper understanding and you may be able to help yourself. I was able to cure my IMO, still working on the underlying SIBO. In my case, since there are no other abnormalities, a lifetime of stress is almost certainly behind my SIBO- a conclusion reached after a whole bunch of lab tests, all on my dime. I know which bacteria strains are the culprits and which are not. But there is no treatment for specific bacteria. I also know that the several side effects that have circumscribed my life are due to my immune system's interpretation of the overgrowth as an infection (it's not). Read my previous posts here for more of the sordid details.

Fun fact- the ancient Greeks figured out that most infirmities originate in the gut.

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Profile picture for supip @supip

I have been treated for SIBO by a naturopath. I took 50 days of Rifaximin with Allimed. After the Rifaximin finished, she had me continue the Allimed and added berberine and Neem Plus. About 12 days into that regimen I got die off that made me horribly sick for two days and moderately uncomfortable for another two days. She now has me on Whole Fiber Fusion and MotilPro. My bowel movements aren’t back to normal, but I have no more diarrhea. She said complete recovery could take quite a while given how long I had IBSD and SIBO. So far so good.

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Who is your Naturopath?

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Profile picture for cofli01 @cofli01

Who is your Naturopath?

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She is at Kwan Yin Healing Arts in Portland, OR.

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Thank you! I've had a multi-year "journey" with IMO(SIBO)....tried many things on my own and a Practitioner a few years back. Looking for someone new/experienced/up-to-date, etc. I'll check her out.

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Hi - I'm 66 with a similar history of stress, but from trauma. Also, my symptoms ramped up at menopause. I've had methane dominant SIBO and constipation as well as reflux. Found a sensitive practitioner and constipation resolved with Magnesium SA and Magnesium Citrate and Liposomal vitamin C. I take the Liposomal Vitamin C morning and evening and the Magnesium at dinner time. It was important that the form of the magnesium was digestible given the state of my gut. I've also tried many other supplements to deal with various "bugs" and "fungi" . I still suffer the reflux and am going to undergo an endoscopy/bravo test in October to see what is going on. Damage to my LES muscle? I've consulted Bella Lindeman's group as well. And read many of the others mentioned here. I do a lot to keep my stress managed - especially attending to nourishing myself with wonderful companions and experiences - simple ones like reading poetry and memoirs, indulging in good movies that tell stories about people and their challenges, and I've built local community in new ways... and I weed out much of the negative as much as is possible. Even with what is so challenging in our world today, it is possible to connect with those doing something hopeful and I volunteer my energies toward being of help to others. That is what heals me these days. I am fortunate to have a loving companion as well who is very accepting of my good days and harder ones. I do try to keep my sense of perspective and gratitude.

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One thing to keep in mind about "good bacterial" treatment for SIBO (or any other illness) is that every time I have seen where that treatment really worked was when the patient was going in to a doctors office/clinic/hospital, etc. and the treatment was being pulled out of a refrigerator right before ingesting. So it does appear that certain good bacteria can help some people *BUT! only if kept constantly refrigerated*. And I don't think there are many companies that will ship products that are kept completely refrigerated 'till they get to the customer for less than a fortune. (Some promise to but I've heard they don't really.)

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Profile picture for h8bigbiz @h8bigbiz

One thing to keep in mind about "good bacterial" treatment for SIBO (or any other illness) is that every time I have seen where that treatment really worked was when the patient was going in to a doctors office/clinic/hospital, etc. and the treatment was being pulled out of a refrigerator right before ingesting. So it does appear that certain good bacteria can help some people *BUT! only if kept constantly refrigerated*. And I don't think there are many companies that will ship products that are kept completely refrigerated 'till they get to the customer for less than a fortune. (Some promise to but I've heard they don't really.)

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Thanks for your comment. I understand there are a lot of useless products that are marketed to us. I do find that I've found a few supplements have eased symptoms and helped me expand my diet so it is less limited. Digestive enzymes are among these products, and some have been too strong and some have done nothing, so it's still trial and error. I also have taken some herbal products that seem to help. Products are so different in quality and formulation - for example, the form of magnesium I was taking was very hard on my body and while it helped to reduce some symptoms, a change in product type (brand and formulation) for the same type of magnesium by a practitioner who understood what she was doing worked so much better without unwanted side effects. Even with prescriptions, I've had experience where a brand drug changes something in the drug and it is much harder on the system than a previous formulation. A very good pharmacist will help you figure that out. Practitioners are all different so it really helps to see someone who has in depth understanding and not to make blanket statements. It also helps to be observant of your symptoms and how they change. I keep my diet fairly tight so I can discern if something is helping or not and try not to change more than one variable at a time. It is still inexact, however. I find if I work with someone whose knowledge base I've come to trust and who can explain why she is prescribing something and is willing to try and then assess, over time, I do get some help managing things. Overall, it has taken time to get out of the panic and fight/flight initially trailing along with my symptoms and find a lifestyle with supportive practitioners that ease this path... It's wholistic - emotional/psychological/physical (nutrition and medical)/stress, community, etc.

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Profile picture for caroljmelville @caroljmelville

Hi - I'm 66 with a similar history of stress, but from trauma. Also, my symptoms ramped up at menopause. I've had methane dominant SIBO and constipation as well as reflux. Found a sensitive practitioner and constipation resolved with Magnesium SA and Magnesium Citrate and Liposomal vitamin C. I take the Liposomal Vitamin C morning and evening and the Magnesium at dinner time. It was important that the form of the magnesium was digestible given the state of my gut. I've also tried many other supplements to deal with various "bugs" and "fungi" . I still suffer the reflux and am going to undergo an endoscopy/bravo test in October to see what is going on. Damage to my LES muscle? I've consulted Bella Lindeman's group as well. And read many of the others mentioned here. I do a lot to keep my stress managed - especially attending to nourishing myself with wonderful companions and experiences - simple ones like reading poetry and memoirs, indulging in good movies that tell stories about people and their challenges, and I've built local community in new ways... and I weed out much of the negative as much as is possible. Even with what is so challenging in our world today, it is possible to connect with those doing something hopeful and I volunteer my energies toward being of help to others. That is what heals me these days. I am fortunate to have a loving companion as well who is very accepting of my good days and harder ones. I do try to keep my sense of perspective and gratitude.

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Gosh! Your story sounds just like mine...literally (including age). I'm still dealing with the SIBO/IMO however and most likely it's time to work with a professional. Meanwhile...
...I cannot agree more re the stress. I'm more than sure that was/is the root of my issues - how it all started and I can almost map the flare-ups of symptoms with times of high stress. I've come to similar conclusions (weeding out negative, and keeping perspective) - also fortunate to have a caring, loving spouse who is with me through all of the ups and downs of this illness over the years.
Blessings to you!

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Profile picture for cofli01 @cofli01

Gosh! Your story sounds just like mine...literally (including age). I'm still dealing with the SIBO/IMO however and most likely it's time to work with a professional. Meanwhile...
...I cannot agree more re the stress. I'm more than sure that was/is the root of my issues - how it all started and I can almost map the flare-ups of symptoms with times of high stress. I've come to similar conclusions (weeding out negative, and keeping perspective) - also fortunate to have a caring, loving spouse who is with me through all of the ups and downs of this illness over the years.
Blessings to you!

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Thanks for your response. I’m sure our standard American diets played some part as well despite being careful and eating organic and skipping the ultra processed foods. Eating out is always an unknown as well… despite ordering judiciously. Just can’t control everything. Calming my nervous system has really helped improve everything - sleep being so important as well.

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