Well, I think I finally beat it! Please read if you have given up-there is hope!
I waited a couple months to post this in case the SIBO came back, but I think I am finally in remission. I have not had a final breath test to confirm this but I can basically eat whatever I want aside from dairy for some reason but I am working on that.
Before I begin, I will clarify that I have had multiple positive breath tests for hydrogen SIBO during this condition and treatment.
For those of us with this condition, we know that there is a scale of symptoms - some people treat this very easily with one round of antibiotics, and others struggle for years/life. I started getting symptoms about 6 months after a bad case of food poisoning abroad. After finally seeing a doctor almost two years later, I did the normal treatment path which I will detail below. After another two years, I had lost 20+lbs, was down to 10 ish safe foods, had tried about every damn supplement that ever existed, and had the worst fatigue of my life, all while working a desk job. At the end of these two years I decided to do the antibodies test. My anti-vinculin ended up being 3+ so I pretty much just accepted this condition as a sentence for the rest of my life. I've only seen a few cases of people with 3+ anti-vinculin and they all end badly...some are on daily half tablets of Rifaximin.
Well, in the past few months, I decided to give up all the damn pills and do my own protocol. I am up 5 lbs (had not gained weight in two years), can eat basically any foods (besides dairy) without bloat/diarrhea, and I'm really only taking 1-2 supplements. The one thing I am unable to beat is histamine intolerance which I will also detail below. Histamine intolerance ended up being the driver of my fatigue which can be linked to SIBO, but can also be linked to other things. One thing that I realized about this condition is that everything medical about it is so new, you can't really assume everything is true even if you read it in a study. The antibodies thing is a prime example - Pimentel says I should be in a death bed right now taking antibiotics everyday, but I'm eating everything, exercising, and living life. This is why it is so important that people share their experiences here, because the stupid antibiotics work like 50% of the time, and I expect its even less than reported.
Initial treatment
In the first year I did all the stool tests and breath tests. I did a course of rifaximin, followed by probiotics, all from a wholistic doctor. The mainstream GI I saw told me I was just going to be Low FODMAP for the rest of my life and there was nothing I could do - super helpful guy. Anyway, the whole probiotics and rifaximin thing didn't work for shit. I think I did a few other supplements like D, K, B, A, and GI resolve at the time too. Nothing.
So I kind of played it off and just decided to eat less FODMAPs. I ended up getting more miserable. At this time, I was having the worse fatigue of my life, sleep disturbances, ear pain, low heart rate, brain fog, stuffy nose, etc. I had to nap 2-3 times a day to function. I had gone to all the doctors (PCP, sleep doctor, ENT) but they were useless. At about this time, I took another round of rifaximin and even more probiotics...I forget which strains but all the main ones, sporebiotic, lacto, akkermansia, etc. Rifaximin didn't do anything again and I just kind of gave up on SIBO, continued to restrict my diet, and go about life. I will note that I was also taking Motility Activator at about this time which worked for a little while but stopped working.
Well I decided the best way to deal with the fatigue was to drink coffee, and this actually helped manage the fatigue a bit to get through the workday. If you are borderline losing your job, this is an OKAY temporary solution. So is napping. Well, someone ended up mentioning histamine intolerance to me...cant remember where although I think it was a family member. This changed everything.
Progress
Well I ended up giving up histamine foods and this reduced my fatigue and brain fog by 80%. This included leftovers/meal prepped food AND probiotics both of which are high in histamine. This was game changing. Between that and the coffee, I felt decent energy wise.
The problem was that I still couldn't tolerate FODMAPs, was continuing to lose weight, was having to cut out more foods, and was having worse diarrhea.
So I went back to the doctor and ran more tests. Ended up testing positive for high levels of SIFO from all the damn rifaximin I had taken. So ended up deciding to do nystatin with a course of rifaximin in the middle, followed by motegrity. Now for people with higher antibodies, you may need something stronger than motility activator, like motegrity. Now, motegrity is potent...it will give you some diarrhea at first, and you may feel depressed or have insomnia. Push through this because the results are worth it. I cut my pills in quarters and took in the morning instead of night and this prevented insomnia/depression after the initial 1-2 week adjustment.
Nystatin was 3 months (I think I only finished 2 months), rifaximin was in the middle, with motegrity starting immediately after rifaximin. I will note that during this course of rifaximin I additionally took 2 biofilm disruptors, PHGG, saachromyces boullardi, and I ate medium fodmaps. And then I also followed with sporebiotic, lacto, and other probiotics. I had tried sulphoraphane and tri-butyrn but these didn't really help and TB gave me diarrhea so I stopped.
My stool was more formed for a few days on Rifaximin, and my energy/mood was decent, although I was also eating new foods, and taking pro/prebiotics, so it is hard to tell what is what.
Success
Well it is hard to say if these things helped much or not but I wanted to document the above treatments so people understand that my success MAY NOT be entirely from what is below even though I believe it mostly is. I am sure that the Rifaximin had some positive effect and I know that motegrity has some neuro-regenerative properties. Nystatin was also essential to clean up the SIFO, but I wouldn't have had that if it weren't for all the damn antibiotics. It is very hard to measure what helped me the most.
My diet at this point was even more restricted and I now had sensitivities to things like eggs, meat, and other sulfur foods which made up like 70% of my calories. This was not good as this is basically what I was living on plus potatoes/rice, and a few choice fruits/vegetables. Well it turns out when you restrict your diet for 2 years to Low FODMAP, you shift the microbiome and can give yourself hydrogen sulfide SIBO even if you start with another type. This was a real low point for me. I asked the doctor what we could do and her idea was more rifaximin with bismuth (which I had basically done this last round as the biofilm disruptor had bismuth). So I was basically out of options, losing weight, losing more foods, and hopeless. I will note that at this point I had tried about every damn supplement and test under the sun, many of which I will not mention here - like most people I have a box. All a waste of time and a waste of money. My stools at the beginning of the two years were brown, somewhat formed, but rough in appearance with pieces of undigested food. Now, they were a pile of mush, often very pale/grey. This was also about the time I got the anti-body results. Not good.
Well, what did I do? I stopped taking the pills, all of them, started from scratch. Didn't even finish the last month of Nystatin. Clean slate, no doctors. Over the course of the next couple months I progressively did the following:
- Continued low histamine diet. Very important. Look up the symptoms of histamine/salicylate intolerance. Fatigue, bloating, gas, insomnia, heart palpitations, anxiety, stuffy nose, ear issues, fatigue etc. There are lots of anecdotes online of people beating IBS from going low histamine. Can't reinforce this enough and don't forget to avoid leftovers and certain probiotics. Histamine regulates so many things in the body, primarily the sleep/wake cycle and not just allergies.
- Mindfulness techniques and breathing methods (mindful gardner on youtube + made my own techniques + other breathing techniques). Look up the correlation between IBS/SIBO and depression/anxiety. Very strong correlation before and during. Stressing about this condition and other life things makes the body unable to heal. One of the techniques that I added is taking life painfully slow (still practicing). Walking slow, eating slow, thinking slow etc. Don't be afraid to make your own techniques.
- Quit coffee - well turns out coffee was contributing heavily to my loose stools. I gave up coffee and tea. Theses also impact histamine although I will not detail that here. Would not even recommend decaf coffee - cut it all out. I drink herbal tea, that's about it. This is also important for the mindfulness techniques.
- Kathleen Janel MSM protocol - I think this truly saved my life. Even after 2 weeks I could tolerate certain foods that I could not before. I am at full dose now and can eat pretty much anything except dairy. I ate black beans, onions, and garlic this week. (a lot). Please integrate slowly one food a week as your body has not had these in years. Some gas is normal the first couple times but normalizes after. Also, some depression is normal during the first few weeks of this protocol-this is normal please push through. Sulfur is a super powerful element - it is one of the most common elements of the body and has crazy health benefits.
- Quitting all the stupid pills
- Integrate foods back slowly. The low FODMAP diet is a temporary tool. If you are on this long term, it will mess you up worse - my stools were pale mush. Between my third round of rifaximin and the protocol above, I started integrating small (very tiny) portions of garbanzo beans and broccoli (2 pieces to start). My body was so happy even if I had a small amount of gas from it. This helped darken and firm my stools up. Integrate a larger quantity of each food and a greater diversity of foods as you go. Even if its just a little bit of medium fodmaps, these will help shift your microbiome and help your body heal. Food is medicine - the longer you avoid it, the worse you will get.
- Lastly, I will mention that good sleep is one of the most important things as well, but a lot of my sleep issues were attributable to histamine intolerance.
All of the above assumes you exercise, eat healthy, hydrate, get sunlight, do not drink/consume drugs, and have a good balance of vitamins/minerals from diet.
Conclusion
I spent thousands trying to beat this condition. I will tell you now that 95% of all the tests and supplements are silly. Even the antibody test which seemed like a death sentence, doesn't mean a damn. All of this research on SIBO is so new...if the doctors knew what they were doing, people would be getting better from the antibiotics and most are not. A lot of my research on this condition was actually on IBS because we have a couple decades of data and research on IBS where as SIBO is so new. There is a lot of overlap between the two conditions.
I am sure that at some level, the nystatin, rifaximin, and motegrity helped me, but it is very hard to isolate the benefit of each from the protocol above. If you have not done antibiotics yet, I would recommend the protocol above to start - you can always take rifaximin later. If you have done antibiotics already but have not seen progress, I would also recommend the protocol above.
I thought about not posting, as I am terrified that this condition will come back in 6 months, but decided that after a few months of zero symptoms, it is unlikely. I also wanted to post in the small chance that this helps someone else or saves someone else's life as this protocol has saved mine. This is a horrible condition that I would not wish on my worst enemy.
Histamine
Lastly, I have not beaten the histamine intolerance so take everything above with a grain of salt. I know histamine intolerance can point toward GI issues, although I have had histamine issues since I was a kid and SIBO only the past few years (symptomatic at least). If anyone has any ideas to help me beat histamine/salicylate intolerance, it would be much appreciated. I have done extensive research but found that the best thing is to just avoid the foods, eat healthy, sleep, and exercise. I know that histamine intolerance can be linked to a number of things including gut permeability which makes me wonder if the anti-vinculin still playing a role at some level. I have had histamine/salicylate sensitivity since I was a kid with eczema, but after the first round of rifaximin/probiotics, I no longer have eczema - I just get fatigue, insomnia, brain fog, flushing, nose congestion, and ear pain when I eat those foods.
I can always avoid the foods, but my experience with SIBO taught me that avoiding foods is a Band-Aid for a larger issue....although it seems like histamine foods are less essential to human health than FODMAPs are. Histamine is actually a super important chemical if you have not researched it that regulates everything including the sleep wake cycle (why eating it causes fatigue/insomnia), parts of the cardiovascular system, etc. I know there are several theories out there about genetically low DAO, gut permeability, microbiome imbalance, MCAS, overgrowth of bacteria, etc, but it is very hard to determine which one is the cause and I am not sure I believe current research (as no one has come up with a solution, just hypotheses, and this condition is even less researched than SIBO).
A number of people have histamine issues in my family and I have had them since I was a kid, so I am leaning towards a genetic component. It is interesting to read stories online of people who have resolved IBS by going on a low histamine diet. DAO is such a niche enzyme, it could be anything impacting it, hell it could be something in the environment, food, or water people have been exposed to. It seems like everyone has histamine issues these days. Given my experience treating SIBO with sulfur I am most likely going to attempt to research potential vitamin, mineral, or elemental, deficiencies that could cause this, and continue mindfulness techniques
If you have any suggestions please leave them below. I am open to ideas.
Postscript
For anyone wondering, I am taking 30 grams of the GI Janel MSM formula daily. I plan to do this for a few more weeks, and then titrate down to a maintenance dose although I have not decided what that will be...maybe 4 grams in the morning. See the links below.
Lastly, I wanted to say thankyou to Kathleen Janel and Helmut Koeckritz (The Mindful Gardner). You guys truly saved my life from this condition and I do not know where I would be without you.
I hope that this post helps someone. Please visit Kathleen's and Helmut's pages below.
Mindful Gardner:
https://www.youtube.com/channel/UCMmeXt5hc8WzeTjQJ0IzasA
GI Janel MSM links:
https://gijanel.com/sulfur-deficiency-and-your-microbiome-health/
https://gijanel.com/the-formulas/gi-janel-one/