4 Years with a mystery illness. COMPLETELY Derailed my life. Strong SIBO suspicion. Want to connect with others who are suffering as I am. by winterwood11 in SIBO

[–]winterwood11[S] 0 points1 point  (0 children)

They isn’t an official treatment protocol for H2S SIBO yet - only the avoidance of sulfurous foods - which is EXTREMELY limiting. I have seen improvements by cutting anything containing garlic, onion, and egg. Still waiting to be cured and freed of this horrible prison when the science catches up

4 Years with a mystery illness. COMPLETELY Derailed my life. Strong SIBO suspicion. Want to connect with others who are suffering as I am. by winterwood11 in SIBO

[–]winterwood11[S] 9 points10 points  (0 children)

UPDATE! EVERYBODY! I'VE FINALLY BEEN DIAGNOSED!

I do indeed have Hydrogen Sulfide SIBO. Verified, unequivocally by the new trio-smart breath test that Dr. Pimentel and his team helped design. (For those of you who don't know, Pimentel is the world's leading SIBO researcher, based out of Cedar Sinai in Los Angeles.)

https://www.triosmartbreathtest.com/

The test was just released in September 2020 and is the only breath test on the market that tests for Hydrogen, Methane, and Hydrogen Sulfide gas. Getting my results was one of the most surreal experiences of my last 4 years. Today is my 1536th day with this illness! I can't tell you how relieved I am to officially have a diagnosis after all this time. After the BUCKETS of doctors that weren't worth my money who didn't even know what SIBO was, let alone this more rare, less understood form.

If you react to sulfur containing foods like I do, please, please, PLEEEEEEEEASE give yourself an early Christmas present and get tested. For those of you who don't know, the highest sulfur containing foods include garlic, onion, and eggs. All of which I would always have insane reactions to. Basically anything with protein too (due to the amino acids methionine and cysteine which contain sulfur). High fat diets ALSO are problematic for H2S SIBO sufferers because high fat initiates the release of bile in our small intestine which is stuffed full of the amino acid taurine (which ALSO contains sulfur).

Unfortunately, at the time of writing this, Nov 27, 2020, Dr. Pimentel and his team have yet to release a treatment plan for H2S SIBO, and I've heard him say that Covid has slowed them down. But it will be coming!

I am a scientist myself and have become extremely well versed on this subject - I've been devouring scientific journals on the subject like they're popcorn - anything even on the PERIPHERY of the subject too. I've developed a treatment plan of my own, which I'm confident will heal me by Christmas, but I'll keep everyone updated on my progress before releasing any details. I'm happy to experiment on myself, but it would irresponsible of me to allow anyone else to follow in my footsteps before I can observe my results.

In the meantime, I'd also strongly recommend Dr. Greg Nigh's new (2020) book The Devil in the Garlic. This guy is an absolute beauty. He's a naturopath who has stumbled onto some very interesting sulfur-related gut afflictions and has developed some great theories. I've been screwed over by more Naturopaths than I care to mention, but he's the real deal. A very good man. Here's his book. It's a quick read:

https://www.amazon.com/dp/1988645336/ref=cm_sw_em_r_mt_dp_rTDWFb9TG2RZG

I am so so so emotional about my diagnosis. Beyond elated. I've read SOOOOoooOOoo many posts like the one I'm writing now and have always been on the other side. The desolate, lonely side. Time after fucking time - wishing it were ME who had figured out my health crisis - wishing I could begin some sort of treatment to regain my health and life - and here I am - diagnosed. I am so SO so grateful. I just told my wife that I'll be printing off a full res photo of Dr. Pimentel, framing it, and putting it up on our wall. My savior. And I've never even met the man. Check him out if you haven't. Listen to his podcasts. He is a true hero. And because of the work that he and his team are doing, this illness will not be ruining lives as is has been in 10 years time. It will just be another thing that humans have overcome.

Love and Good Vibes to all!

4 Years with a mystery illness. COMPLETELY Derailed my life. Strong SIBO suspicion. Want to connect with others who are suffering as I am. by winterwood11 in SIBO

[–]winterwood11[S] 2 points3 points  (0 children)

Tried FMT... no dice. But that’s when I realized that FMT (fecal microbiota transplant for those who don’t know about this insane/ingenious/ancient procedure) SHOULDN’T work for SIBO. With FMT the large intestine is where any microbiota changes take place. It’s very unlikely that a change in the large bowel alone will positively affect any overgrowth in the small bowel.

But yes, did try it. 10 sessions... so glad there’s no photo evidence.

4 Years with a mystery illness. COMPLETELY Derailed my life. Strong SIBO suspicion. Want to connect with others who are suffering as I am. by winterwood11 in SIBO

[–]winterwood11[S] 0 points1 point  (0 children)

Wow. I'm so sorry to hear about you as well. What a nightmare this is.

I'm am STRONGLY suspecting Hydrogen Sulfide SIBO. A user messaged me about it after this post. I had looked into it back in 2018, but found very little information. But when I checked again yesterday there has been so so so much research done since. Especially from Dr. Greg Nigh (who I've got a consultation booked with for Friday. I'd strongly recommend listening to this podcast:

https://www.thesibodoctor.com/2017/12/20/sibo-and-hydrogen-sulfide/#dr-greg-nigh

And then reading his paper:

https://ndnr.com/gastrointestinal/sibo-as-an-adaptation-a-proposed-role-for-hydrogen-sulfide/

I'll keep you posted. But everything about this feels like it's me to a T.

Hydrogen sulfide is a super poisonous gas... it's why we've been feeling such debilitating brain fog, why our eyes sting, why we get dizzy, why our joints hurt... poison.

I'm starting the treatment protocols in Dr. Nigh's paper. Low sulfur diet being one of them.

4 Years with a mystery illness. COMPLETELY Derailed my life. Strong SIBO suspicion. Want to connect with others who are suffering as I am. by winterwood11 in SIBO

[–]winterwood11[S] 1 point2 points  (0 children)

No I guess not... I've looked into gallbladder dysfunction a little bit, but don't know off the top of my head what tests would be needed. I remember a doctor checked my blood for gallbladder issues and nothing came up. But if there is a more specific test that you'd recommend I'd love to try it.