Hydrogen Sulfide SIBO

[TheBrain]

The Brain, you are right, when I was on the elements diet there was no real food allowed almost at all! but when I was taking the antimicrobials for 3 months, I was not on any diet! No food restrictions, I was eating everything except gluten dairy and eggs- I am sensitive to those groups. I felt amazing on the antimicrobial treatment! but like you probably already know, that treatment was quite expensive. Is your doctor considering using xifaxan (rifaximin) at all?

I am a big tester, if you do not test you simply guess, to that point I just did G.I. MAP test, and I have discovered that I am a host to a nasty parasite! YUK! I hope, thought, that I am getting close to improving and balancing my gut's health! How much of different invasions can one person take!!
BTW no other stool tests, I have done so far has discovered what GI Map have found! Interesting right... (Just FYI for the readers: stool tests do not look for SIBO. SIBO is only diagnose via a breath test).
I am not on the treatment yet. If you have any tips or resources on parasite elimination (probably depends on the type of a parasite) you can share with me please let me know.

Hi Magna,

I just realized I never responded to your reply. I’m now on Day 6 (or Day7?) of Rifaximin. That is REALLY working. Previously, I did two rounds of various herbal antimicrobials, and they were helping with symptoms of insomnia, mental fatigue, memory, and GERD/gastritis. However, the constipation wasn’t budging. The Rifamimin is busting through that. I’ve gone from taking 1600 mg magnesium citrate per day to NO magnesium. (Later, I’ll add some magnesium back in because I know how common deficiencies are.) Never before did I have that sulfur smell associated with hydrogen sulfide SIBO in my stool. Now it’s quite strong. I’ll be on Rifaximin for 14 days. My primary insurance brought the cost down from around $2K to $625 or so. Fortunately, I have a secondary that will reimburse me for that. I was given an extra month in my virtual GI Restoration program at no extra cost. Presumably, I’ll begin the gut-healing phase after I finish Rifaximin. I look forward to reintroducing high-sulfur foods.

I’m amazed you didn’t remove any high-sulfur foods during your eradication phase. But obviously, your protocol worked!

Thanks for telling me about the G.I.Map test. If I continue to have issues, I’ll look into that. I’m sorry to hear you have/had a parasite. I don’t have any experience with treating parasites. Based on testing I’ve done, no parasite has ever been found, but I’ve heard that parasite testing is notorious for missing those buggers. It sounds like the G.I. Map test is the way to go for that.

Have you begun parasite treatment? If so, how’s it going?

[SusanJ]

Just came across this article by Nigh about SIBO and his theory on why SIBO is not a "problem," but an adaptation to help the body get sulfates. So, he posits that if you don't treat the underlying sulfate deficiency, treating SIBO with antibiotics often fails.

It's a quick read, but with references of how he developed his thinking.

https://ndnr.com/gastrointestinal/sibo- ... n-sulfide/

[LA18]

As a long-term SIBO sufferer, I found this fascinating. Thanks for posting it.

TheBrain, thank you for the information about interpreting breath test results and for asking your doctor about the possibility of someone having hydrogen sulfide as well as another type of SIBO. I think I am very likely in that category. I hope your treatment is progressing well.

[Rebekah.s.johnson]

Hello all! I too am a long time SiBO sufferer and have had hydrogen sulfide sibo for 3 years. When I initially googled all my symptoms, nothing came up. Now 3 years later there is information! Which is exciting but overwhelming. What doctors are you all seeing? I live in OH in the US and no “regular”doctor to my knowledge would have an idea how to treat sibo. Are you seeing functional doctors? I would prefer someone who takes insurance for financial reasons but rest any recommendations are helpful. Thank you! (I have seen both types in the past and no one has been able to get to the root cause, but with this new information I am more hopeful).

[Magda]

Hello all! I too am a long time SiBO sufferer and have had hydrogen sulfide sibo for 3 years. When I initially googled all my symptoms, nothing came up. Now 3 years later there is information! Which is exciting but overwhelming. What doctors are you all seeing? I live in OH in the US and no “regular”doctor to my knowledge would have an idea how to treat sibo. Are you seeing functional doctors? I would prefer someone who takes insurance for financial reasons but rest any recommendations are helpful. Thank you! (I have seen both types in the past and no one has been able to get to the root cause, but with this new information I am more hopeful).

Hello Rebekah.s.johnson,
Welcome to Apoe4.info!

I use functional medicine practice and unfortunately, they do not take insurance.
I can send you to a SIBO resource and I know that on this site (link below) you can find a practitioner specializing in treating this condition:
https://sibosos.com/recommends/
They might ask you to sign up to gain information…

What brings you to our community? How did you find out about our forum?
When you have a minute, I invite you to write a little more about yourself. A good place to post your introduction is “our stories”:
viewforum.php?f=2

If you have not found it yet, I also would like to point you to the PRIME.
The Prime has been written by our member, dr. Stavia and contains comprehensive information on Apoe4 allele, information on prevention strategies, on some important biomarker, and in general tips on how to preserve excellent brain health!
viewtopic.php?f=33&t=1418

Again, welcome to the community! I hope you will find tons of important to you information on our site and please do not hesitate to post if you have more questions.

My best,
Magda

[LA18]

Rebekah, I saw various functional med doctors (none were covered by insurance) and consulted with a SIBO-aware gastroenterologist in Ohio (William Salt) via phone. I paid out of pocket for that, but I think he sees patients in his Columbus office. Had I gone there in person, my insurance would have covered it. I talked to him a few times and found it helpful. After going through the results of tests I had done locally, his conclusion was that I had a problem with motility in my small intestine. The possibility of hydrogen sulfide SIBO was never mentioned at that time, but that was a number of years ago. Fortunately, my GP treats SIBO, so I’ve been working with her on this for the past couple of years. It is pretty frustrating when doctors, especially gastroenterologists, aren’t award of this condition….

[TheBrain]

Just came across this article by Nigh about SIBO and his theory on why SIBO is not a "problem," but an adaptation to help the body get sulfates. So, he posits that if you don't treat the underlying sulfate deficiency, treating SIBO with antibiotics often fails.

It's a quick read, but with references of how he developed his thinking.

https://ndnr.com/gastrointestinal/sibo- ... n-sulfide/

Susan, thanks for posting this article. It’s great to read a referenced article by Dr. Nigh. I’m going to share it with the naturopathic gastroenterologist I’m still seeing, who follows the traditional naturopathic model of treating SIBO. One exception is that her program also emphasizes mindset work, which is a piece of my puzzle. From the get-go, she has suspected that my SIBO is ultimately a symptom of mold toxins damaging my gut’s enteric nervous system and migrating motor complex (MMC). But the fact that I have hydrogen sulfide SIBO suggests to me that sulfur metabolism impairment is also playing a role. I’ve discovered garlic is an issue for me, which bums me out to no end.

[TheBrain]

Hello all! I too am a long time SiBO sufferer and have had hydrogen sulfide sibo for 3 years. When I initially googled all my symptoms, nothing came up. Now 3 years later there is information! Which is exciting but overwhelming. What doctors are you all seeing? I live in OH in the US and no “regular”doctor to my knowledge would have an idea how to treat sibo. Are you seeing functional doctors? I would prefer someone who takes insurance for financial reasons but rest any recommendations are helpful. Thank you! (I have seen both types in the past and no one has been able to get to the root cause, but with this new information I am more hopeful).

Hi Rebekah,

I'm in the virtual GI Restoration program that Jason Klop, ND, offers. He's based in Canada, but he also has staff in the United States and Germany. The program is expensive, and my health insurance doesn't cover it. But no one else over a period of many years has helped me heal my gut, and it's been a big hole in my roof (per Dr. Bredesen's 36 holes in the roof metaphor). So I figured it was worth the expense because I want to do everything possible to prevent or delay Alzheimer's disease.

Here's Dr. Klop's web site: http://www.beatsibonaturally.com. From here, you can sign up on his email list (under the Membership tab), and click a link to join his free Facebook group. You can get a sense of him and his work. This web site is not actually how I came across Dr. Klop. I had attended a webinar on fecal microbiota transplants, and he was the person being interviewed. In December 2018, he offered a retreat in Mexico where he oversaw these transplants being performed at a clinic he carefully vetted. I decided not to go that route, but to instead sign up for his GI Restoration program.

I also find the work of Greg Nigh, ND, of particular interest. If you scroll through this thread on Hydrogen Sulfide SIBO, you'll see I collected links to some of his resources, including free podcasts, a $59 masterclass, and his $20 protocol. Susan also posted a link to an article he wrote for an audience of naturopaths. If I recall correctly, Dr. Nigh and his nutritionist work with clients remotely, but I doubt insurance would cover the cost of sessions.

I find that Hydrogen Sulfide SIBO is different from the other two types of SIBO. If I were you, I'd definitely try to find a practitioner who has expertise in this form of SIBO.

Good luck!

[Rebekah.s.johnson]

Thank you both for your reply!

I actually found this group via searching hydrogen sulfide sibo. I have never had genetic testing done so I don’t know if I have the gene this group was founded for. I did read through this thread and have found the links to be helpful. Best of luck to you all in your journey.

[Julie G]

Just came across this article by Nigh about SIBO and his theory on why SIBO is not a "problem," but an adaptation to help the body get sulfates. So, he posits that if you don't treat the underlying sulfate deficiency, treating SIBO with antibiotics often fails.

It's a quick read, but with references of how he developed his thinking.

https://ndnr.com/gastrointestinal/sibo- ... n-sulfide/

Now, THIS is fascinating. Thanks, Susan! Out of curiosity, I wonder how it relates for those of us with methane predominant SIBO. Any links you can point me towards that would help me better understand the relationship between hydrogen sulfide and methane?