Have you successfully treated SIBO?

Posted by geezer7491 @geezer7491, 2 days ago

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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annpeters | @annpeters | 23 hours ago

Hi Geezer, I quickly looked at food marble, as I had never heard of it before. It caught my interest, but I couldn’t exactly see how it worked other than people writing reviews. Do you blow into it? Do you take a blood sample? How long after you eat the food, do you know if It doesn’t agree with you. I’d be very grateful if you can help me with answers. I look forward to your response and I wish you well. I am very much interested in the foodmarble as I have never heard of it before and to be quite frank. I’m desperate! Many thanks!

annpeters | @annpeters | 23 hours ago

Again to Geezer, as you probably already realized, I’m not a techie so bear with me…🙂

ggr | @ggr | 10 hours ago

Please investigate Mast Cell Activation. Most physicians do not know anything about it. My daughter was diagnosed at Mayo Scottsdale about 6 years ago by Dr Brent Goodman. He also diagnosed POTS and Ehlers Danlos. Those 3 diseases are called "the trifecta". The doctor is a neurologist. Look him up. It looks like he is not still at Mayo but is still affiliated. He might be able to recommend a doctor in your area. Once my daughter got the right medication, SIBO quit coming back. Mast cell has only been a recognized diagnosis for under 20 years, which is why it is difficult to find a doctor.
You can find info about the disorder on the Mayo website and other sites online. She had to find a doctor where she lives and found an allergist who has made mast cell one of her specialties. Feel free to let me know if you have questions. I will answer if I can or if she can.

aileenredding | @aileenredding | 10 hours ago

In the past I have had SIBO as confirmed by the breathing test. I was prescribed Xifaxan. It seemed to work for short periods of time. But it was a headache to get insurance to pay for it.

geezer7491 | @geezer7491 | 9 hours ago

In reply to @annpeters "Again to Geezer, as you probably already realized, I’m not a techie so bear with me…🙂" + (show)

@annpeters- As a new member, this site will not allow me to post links. In fact, it deleted my entire post because I included links to Foodmarble and Bella Lindemann's Functional Gut Health Clinic.

The Foodmarble is a breath tester that reports instant results, but I have never supplied any requested info on diet or bodily function, as I see that as somewhere between intrusive and creepy. Further, I don't put much faith in an algorithm for specific diagnosis. Also, be advised, the accuracy of this tester cannot be corroborated. OTOH, Johns Hopkins tested it a while back and gave it high marks.

Bella Lindemann seems to be extremely knowledgeable on these issues, but no longer advises individual clients. She has a blog as well as videos. But my experience with her assistant, Rachael Singh, was basically unhelpful, as she started each consult from scratch with no reference to prior discussions, and her advice, via email, consisted of generic copy/paste info that indicated to me that she had nothing specific to offer.

geezer7491 | @geezer7491 | 9 hours ago

In reply to @aileenredding "In the past I have had SIBO as confirmed by the breathing test. I was prescribed..." + (show)

@eileenredding- My insurance has never paid a nickel against the thousands I have spent. I suggest you steer clear of neomycin, often prescribed with Xifaxan (riflaxamin) because neomycin is a broad-spectrum antibiotic which will sterilize the entire GI tract, "good" bugs included, often leading to life-long health issues.

supip | @supip | 6 hours ago

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.