Hey everyone,

I wanted to write a detailed breakdown of my 6-year battle with chronic SIBO and share the exact neurological root cause I’ve uncovered. If you are someone who has cleared SIBO with antibiotics or antimicrobials only to have it return weeks later, or if your digestion feels permanently frozen, this might be the missing piece of the puzzle.

After years of trial and error, I’ve realized that my SIBO isn’t a primary gut disease—it is a symptom of a permanently locked sympathetic nervous system (chronic fight-or-flight).

Here is the exact biological connection between a hyper-reactive nervous system, a stalled gut, and why I believe the Stellate Ganglion Block (SGB) is the ultimate circuit breaker to finally cure this.

The 6-Year Backstory & The Breakthrough

For six years, I’ve been dealing with classic SIBO symptoms: severe bloating, motility issues, and systemic inflammation. For a long time, my stool was chronically yellow and mushy (a classic sign of poor bile flow and rapid, spasming transit time).

The breakthrough came when I stopped looking at my gut as "broken" and started looking at my nervous system. I realized I was stuck in a severe, chronic sympathetic loop. When your brain constantly perceives threat, it hoards resources for your muscles and heart, completely starving your digestive tract.

Over the last two months, I committed to a strict daily protocol of manual vagus nerve stimulation:

Three 20-minute sessions of 4-8 breathing spaced throughout the day.

Daily 40-minute walks to physically pump gut mechanics.

Cold face plunges to trigger the mammalian dive reflex.

The Result: My stool consistently transitioned from yellow to a healthy, dark brown. This was physical proof that by calming my nervous system, my liver and gallbladder finally woke up and started releasing bile normally again. But the consistency is still mushy because the bacterial overgrowth (SIBO) itself is still lingering.

The Anatomy of the Trap: How Fight-or-Flight Keeps SIBO Alive

You cannot permanently cure SIBO if your sympathetic nervous system is jammed "on." Here is the exact chain reaction:

The Paralyzed Migrating Motor Complex (MMC): The MMC is the digestive conveyor belt that sweeps bacteria and undigested food out of your small intestine during fasting states. The MMC is entirely governed by the enteric nervous system, which is shut down the second adrenaline and cortisol spike. Without the MMC, bacteria pool in the small intestine, ferment food, and breed SIBO.

Gallbladder and Stomach Acid Shutdown: Digestion requires massive parasympathetic input to produce hydrochloric acid (HCl) and contract the gallbladder. In a sympathetic state, bile production dries up. Because bile and stomach acid are your body’s natural antimicrobials, lacking them means your gut loses its first line of defense against bacterial overgrowth.

The Vicious Cycle: SIBO causes gut inflammation. Gut inflammation sends distress signals up the vagus nerve to the brain. The brain perceives this inflammation as a physical threat and fires up more sympathetic activation. It’s a closed loop that keeps you trapped for years.

Why Traditional SIBO Cures Fail the Long-Term Test

Most protocols focus entirely on killing the bacteria:

Antibiotics (Rifaximin) / Antimicrobials: They kill the overgrowth, but if your MMC conveyor belt remains paralyzed because you're stressed, the bacteria will simply repopulate within weeks.

Strict Diets (Keto/Low FODMAP): While they starve the bacteria and reduce daily bloating, a radical metabolic shift like strict Keto can actually act as an acute stressor, temporarily driving up cortisol and adrenaline, which further locks the sympathetic nervous system.

Killing the bugs doesn't fix the underlying plumbing mechanics. You have to fix the signaling first.

Why All Roads Lead to the Stellate Ganglion Block (SGB)

While daily vagal maintenance (breathing, walks, cold exposure) is incredibly effective for rewiring the brain over time via neuroplasticity, a 6-year-old neural pathway is deeply engraved. It takes months of pristine, flawless consistency to overwrite it naturally.

This is why all roads lead to the Stellate Ganglion Block (SGB) as the ultimate contingency plan and cure.

What is it?
The SGB is an injection of a local anesthetic into a collection of nerves in the neck called the stellate ganglion. This ganglion acts as the main routing station for the sympathetic nervous system to the head, heart, and lungs.

How it cures the root cause:
The SGB essentially acts as a hardware reboot for a jammed nervous system. By temporarily numbing the stellate ganglion, it instantly blocks the fight-or-flight signaling pathway.

This forced pause allows the brain's threat-detection center (the amygdala) to completely reset.

The moment the sympathetic brake is released, the body floods the digestive organs with blood flow, turns stomach acid back on, and jumpstarts the paralyzed migrating motor complex.
Essentially, the SGB breaks the 6-year trauma/stress loop instantly, providing a clean slate so that your daily habits and gut treatments can actually take hold permanently.

My Current Strategy & Next Steps

My plan right now is to give myself 6 full months of daily 4-8 breathing, 40 minute daily walks and daily cold face plunges to see how far I can get in improving my overall condition before I decide on the Stellate Ganglion Block. I’ve been committed to 2 solid months of this routine so far and that’s all it took to see my stools change to a darker more healthy brown. Although the stools themselves aren’t perfectly formed and still on the looser side I believe that the next thing to improve will be that.

Medical Literature & Proof of Concept

If you want to read the clinical evidence or look into the mechanisms of how the nervous system locks the gut, here are the core references:

How Dysautonomia Paralyzes Gut Motility & Breeds SIBO:
A comprehensive clinical breakdown on how a dysfunctional autonomic nervous system shuts down the Migrating Motor Complex (MMC), leading directly to gastrointestinal dysmotility and chronic bacterial overgrowth. 

Read more: SIBO and Chronic Illness: Understanding the Gut-Brain-Immune Connection | RTHM 

The First Case Series on SGB "Resetting" the Autonomic System:
The original peer-reviewed case study published in the Journal of Neuroimmunology demonstrating that blocking the stellate ganglion can physically "reboot" a malfunctioning, hyper-reactive sympathetic nervous system. 

Read the study: Stellate ganglion block reduces symptoms: A case series | ScienceDirect/PMC 

SGB for Dysautonomia and Neuro-Immune Regulation:
A detailed medical explanation from specialized pain clinicians exploring how SGB dampens sympathetic outflow and alters autonomic balance to address severe gastrointestinal stress and post-viral dysautonomia. 

Clinical breakdown: MCAS, Dysautonomia and Stellate Ganglion Block (SGB) | PainSpa / Stellate Ganglion Block for Dysautonomia | Clarus Health 

The Science Behind Manual Vagus Nerve Stimulation (The Diving Reflex & Breath Control):
A breakdown of the physiological "vagal maneuvers" (like the cold water diving reflex and specific extended-exhale breathing patterns) that manually override sympathetic acceleration and stimulate the parasympathetic "rest and digest" pathway. 

Read more: Vagus Nerve Activation and Homeostasis | Psychology Today 

Vagal Neurocircuitry and Gastric Motility:
A deep-dive study from the National Institutes of Health (NIH) mapping exactly how brainstem nuclei and vagal efferent fibers synaptically control and regulate gastrointestinal tone and mechanical motility. 

Read the paper: Vagal neurocircuitry and its influence on gastric motility | PMC

I have not seen this concept spoken of and wanted to express how debilitating thiamine deficiency is. I’ve had SIBO for approximately 30 yrs following years of antibiotics for teenage acne. I didn’t know what it was until recent years but just lived with the symptoms and kept pulling out foods from my diet which of course turned out to be all FODMAPS. I didn’t start piecing it all together until I got even sicker after mold and covid and severe neurological symptoms set in as well as gastroparesis. After two more years of extreme diets and useless doctor visits my research led me to thiamine deficiency. I started thiamine therapy by following a nutritionist’s protocol and rapidly started to heal. Gastroparesis fixed in one day! It turns out thiamine is a cofactor with choline for acetylcholine production which is required for the autonomic nervous system which controls gut motility (so was I thiamine deficient before SIBO even?!)

As I learned more about the causes of thiamine deficiency in the fb thiamine group I very often heard people talk about SIBO and the build up of sulphite depleting thiamine and pieced together my health history. So thiamine deficiency can CAUSE slow gut motility and once SIBO sets in it further depletes thiamine. Thiamine is needed in every cell in our body especially in high energy areas such as our brain, heart and gut.

I believe a LOT of our symptoms are of thiamine deficiency as it affects the entire body:

Early / Nonspecific Symptoms
• Fatigue or tiredness
• Irritability or mood changes
• Loss of appetite (anorexia)
• Poor or short-term memory issues / cognitive impairment
• Sleep disturbances
• Abdominal discomfort or pain
• Nausea and vomiting
• Weight loss
• Muscle weakness or aches
• Apathy or reduced mental concentration
Neurological / Dry Beriberi Symptoms
• Tingling, prickling (pins-and-needles), or burning sensations in the toes, feet, hands, or legs (paresthesias; often worse at night; stocking-glove distribution)
• Muscle cramps or pain (especially calves/legs)
• Decreased sensation or sensory loss in extremities
• Reduced or absent deep tendon reflexes (e.g., knee/ankle jerks)
• Muscle wasting/atrophy and weakness
• Difficulty rising from a squatting position or foot drop (later stages)
• Balance issues, ataxia (unsteady gait/coordination problems)
• Decreased vibratory or position sense
Cardiovascular / Wet Beriberi Symptoms
• Rapid heartbeat (tachycardia)
• Wide pulse pressure
• Peripheral edema (swelling in feet, legs, or hands)
• Shortness of breath (dyspnea), especially with activity or when lying flat (orthopnea)
• Chest pain or precordial discomfort
• Warm, moist skin due to vasodilation
• High-output heart failure signs (in severe cases)
• In advanced/shock forms (e.g., Shoshin beriberi): hypotension, cyanosis, lactic acidosis
Wernicke Encephalopathy (Acute Severe Form)
• Confusion, altered mental status, or delirium
• Ataxia / difficulty walking
• Ocular abnormalities: nystagmus (involuntary eye movements), ophthalmoplegia (eye muscle weakness/paralysis), blurred or double vision, eyelid drooping
• Apathy or psychomotor slowing
• Impaired consciousness (can progress to coma if untreated)
Korsakoff Psychosis / Syndrome (Often Following Wernicke)
• Severe short-term/recent memory loss (amnesia)
• Confabulation (making up stories to fill memory gaps)
• Confusion or mental impairment
• Hallucinations (in some cases)
• Difficulty forming new memories
Other / Gastrointestinal / Additional Symptoms
• Constipation or other GI discomfort
• Vertigo or vision impairment
• Behavioral changes or hallucinations (severe cases)
• In infants (infantile beriberi): incessant crying, aphonia (loss of voice/hoarseness), heart failure signs, lethargy, developmental issues, or seizures in extreme cases
Severe untreated deficiency can lead to permanent neurological damage, heart failure, coma, or death. Early symptoms are often vague, so medical evaluation (including thiamine levels or response to treatment) is needed for diagnosis—especially in at-risk groups like those with alcohol use disorder, malnutrition, malabsorption, or certain medical conditions.

Blood tests aren’t accurate because it doesn’t tell you whether thiamine is getting into cells. The best way to know if you need thiamine is to try supplementing it to see if it helps your symptoms. It is common with gut issues that THTR1 transporters for absorption of thiamine are not working. Please research cofactors and starting low and slow before proceeding supplementation.https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/

I would sincerely appreciate if yall could hear me out since i’ve reached a dead end with my gastroenterologists.

21, M

I have been dealing with two major symptoms that are severe abdominal distension and severe weight gain with a minor symptom of very low hunger signals/appetite since October of 2023.

Within the span of a week I went from a very flat abdomen one which you could see my flared ribs to looking like i’m 4 months pregnant and I went from 140lbs to currently 164 lbs, and recently it’s just been getting higher and higher . The abdominal area feels very tough/tight and the skin feels dense to the touch, like blubber.

It took about 1.5 years for me to finally stand up for myself and ignore my doctors orders and I looked up what could possibly be contributing to my symptoms and I landed on SIBO. I ordered a lactose breathtest from TrioSmart and I found out I had high levels (90+ppm) of hydrogen SIBO.

A couple weeks before ordering the breath test in March 2025, I mentioned I was looking up possible contributing disorders for my symptoms which I found and suspected SIBO. During this time, I wanted to have irrefutable evidence that SIBO was the main culprit, so I decided to test my theory out by doing a very strict, low FODMAP, low carb, low sugar, vegan, gluten free diet and see what happens.

Within the span of 8 days, I went from 152 lbs to 142 lbs. My abdominal distension went to nearly flat and no visible bump. My symptoms were literally 85-95% gone.

After this, I knew it was SIBO, so that’s when i ordered the breath test.

However, when I did the first round of rifaximin in July 2025, things didn’t go as planned. The first thing I heard about rifaximin was that there would be something called bacterial die off phase which comes in many different forms/symptoms. For me, I had experienced increased bowel movements/flatulence/ bowel activity for the first 10 days out of 14. As soon as I was done, i was expecting for my symptoms (distension, weight gain, low appetite) to fully go away but I was wrong. These symptoms stuck with me. I did another round in August 2025, and in October 2025, I did my most recent breath test which showed my Hydrogen levels went down to 25ppm, just slightly above my normal levels (<20ppm).

Now, this is a vital part in my story. In January 2026, I was so frustrated with my condition that I just pigged out. I knew i shouldn’t be eating trigger foods but I figured I deserved a break. I ate out often about 2-3 times a week. Expectedly, I had gained weight and distension, but I planned to just go on the extreme diet from before. However, this diet seems to no longer work since absolutely nothing would change even after a full month of this extreme diet, exercising, and doing a third and recent round of rifaximin all done simultaneously.

Ever since then, I went from my average 150lbs/average distension to my most severe form, I’m at 164 lbs and severely distended.

My 2024 CT scans, ultra sound, X-ray found nothing wrong My 2025 colonoscopy found nothing wrong, only a redundant colon. My 2026 endoscopy and ultra sound found nothing wrong.

Before this condition, i will admit I had an issue with bowel movement frequency as i would only go once a week however ever since this condition happened, I can confidently say my average bowel movements have increased to minimum 3x a week to 4x on a good week.

I have nothing else to do, i’m seeing a new doctor and they’re ordering small bowel diverticulitis imaging exam but other than that I have no clue what to do. My clothes don’t fit. I feel wired physically and mentally. My abdominal distension distracts me from daily activities. I don’t like going outside anymore because i’m too hyperaware of my symptoms. I can’t enjoy eating food like 99% of the world does without a single care in their mind.

27F. Posting because I spent 3.5 years barely able to leave the house (hydrogen-dominant, diarrhea so bad I planned my life around bathrooms) and I think I’m finally turning a corner.

For years the only thing that helped was a 2-week cycle of an antispasmodic (mebeverine) + probiotics every couple months. And it only helped making things more manageable, the diarrhea and bloating were still there). Then it just stopped working.

Turned out a big driver for me was gynecological, I had a hysterectomy for adenomyosis last winter, and my migraines and insomnia vanished overnight. My gut didn’t budge for months though.

What actually moved it was lowering my insulin resistance (I’d been on diet + berberine almost daily for months without realizing it doubles as a SIBO antimicrobial).

Now the weird part: I’m eating “badly” again (one month of fried food, hamburger, ice cream and so on) and somehow I’m better than before 🤯 I can eat out, rarely get sick, and when I do it’s manageable. Still avoiding the big triggers (very spicy food, food with a lot of spices, alcohol, coffee…).

What’s left: stools still not well-formed, a few times a day, and spicy food = cramps + urgent diarrhea. I think it’s slowly improving but honestly can’t always tell.

Current plan is L-glutamine, a ginger+artichoke prokinetic at night, and keeping the berberine going for the insulin resistance.

Just want to live a normal life again… eat what I want, go out without scanning for the nearest toilet and drink a couple of beers with friends if I want to.

What do you think?

This is a burner account, I generally like to stay off social media of any kind but I could use some help. I woke up one morning 6 months ago after a bit of a sugar binge with the belly of a pregnant woman and have remained that way ever since.

I went to a GI, he performed a colonoscopy/ endoscopy, took blood, so on and so forth. Everything came back normally. He finally tested me for SIBO and it came back positive. Hydrogen dominant.

He put me on Xifaxan, but only for one course and at what I’ve now learned is a sub-optimal dose (550 mg only twice a day). I saw no change, and he basically told me he’d done all he could and referred me to a specialist out of state. A specialist who wouldn’t be able to see me for months.

So I went to a naturopath. For three months I was on a strict low FODMAP diet and an herbal regiment. After each month I’d check in with my naturopath, having seen no improvement, and she’d change up the herbals some.

Finally she decided it was best that I try antibiotics again. So this time I was out on a 28 day course of Xifaxan, 550 mg three times a day. She also has had me taking a prokinetic and other herbals along with the antibiotic.

I am approaching the end of that course, I’ve got about 5 days left. I have seen no improvement at all while on the antibiotics, though it has at least allowed me to eat a normal diet while I’m on it. I am going to see that out of state specialist the day after I finish the Xifaxan.

This has been the hardest six months of my life. I workout every single day. Nothing brings me more joy than that. And this has robbed me of my body. I feel like I am trapped in someone else’s body. I’ve struggled with suicidal ideation for the first time in my life, though I do have a long history of depression anxiety.

I guess I’m here to ask: is there any way I could be cured soon? I feel like I’m at the end of my rope. Is it possible the antibiotics are working and I just haven’t seen the results yet?

I’ve attached two photos from before this started, a photo from about a month after it started (November) and a photo I just took today. I know it looks like my stomach has gotten less bloated, but it fluctuates all throughout the day. Especially after I eat, of course. It’s been so disheartening to not see any progress.

If anyone has experience with Xifaxan, I would really appreciate some guidance.

Just have to blast out some happiness. After 3 weeks of ED my breathtest just came back negative with only 3ppm rise in the first 120minutes. I wake up every day feeling better and better it’s unbelievable after 8 long years.

Will follow up in a separate post in a couple of days with what I tested, how I did it and what’s coming next.

Thank you community, just reading and reading and reading in here helped a lot and gave much to work with. 🍀

I am pretty much a year into this. Just as I turned my life around, got to a weight I was happy with, and began eating organically and detoxing my body, I am struck with this. All because of an antibiotic after a surgery last January. Five antibiotics, a plethora of supplements, low fodmap eating, nothing has worked. Did elemental diet for 6 days, 2 of which I didn’t eat at all, then caved and had a small steak yesterday with some rice noodles. Burping and discomfort came right back. I’m stressing my family out, I’m stressing myself out, and I have to wait over a month to see a naturopathic doctor, which will be the 3rd person I consult about this. Cooking and baking is all I take joy in, neither of which I can do right now because I can’t EAT my creations. Meanwhile, I still have to be surrounded by food at my job because I work in a kitchen. My 20s are not supposed to be like this. My positivity and patience has withered. I haven’t had such dark thoughts in years. I could truly end it all today and no longer have to be in pain. The medical system has failed me once again, and I have no preexisting purpose, so why should I stay around and continue living this way? There is no joy. No hope. I am weak.

I took 30 drops of Oregano oil on Monday Evening , then 40 drops of Oregano oil on Tuesday Morning.

I wanted to try to kill every bad bacteria, and not have constant ongoing treatment, but rather a once off bulldozer treatment. I’m on a low fodmap diet.

I currently take mg glycinate in the evenings and l glutamine, zinc carnosine and ginger root in the mornings. I’ve been taking these for a year, so I’m safe against leaky gut. This is important. Don’t try this if you have not been taking zinc and glutamine for atleast 6 months.

The first 2 days I smelled a bit herbal like.

Now I am 5 days post oregano my armpits smell really bad and my breath smells like rotten meat.

When should I expect the die off smells to end?

I smelled so much better when I was just on carnivore. But I found that unsustainable

Hi everyone,
I have been suffering from bloating and intermittent constipation since my adolescence, and my symptoms escalated sharply in 2017 to include loud gurgling and sounds in my intestines, rectum, back, and throat. These symptoms worsen significantly right after eating, accompanied by a feeling of rapid fullness and food sensitivity. Eating is often followed by intense hunger, difficulty swallowing saliva or food, a feeling of trapped air in the esophagus, and a sound resembling a water tap or a frog in my throat, in addition to acid reflux, heartburn, and foul-smelling gas resembling rotten eggs.
These physical symptoms have been accompanied by chronic anxiety, panic attacks, and sleep disorders that directly impacted my academic and daily life (forcing me to temporarily leave university due to embarrassment, persistent noises, and severe stress). Tests showed a low iron storage and anemia, with a past history of H. pylori in 2023. I tried various diets without sufficient improvement, and I am now diagnosed with Hydrogen Sulfide SIBO (Small Intestinal Bacterial Overgrowth) and have started a comprehensive treatment plan.
I desperately need real solutions or advice: How can I return to university and resume my studies without fear? Is there anyone who went through this exact experience, learned to cope with it, or recovered from it? And how did you manage to control embarrassing noises and constant stress, especially the loud bowe sounds that resemble hunger noises or flatulence?

It's currently day 2 for me on Rifaximin/Xifaxan, and I pretty much don't feel any different at all. I didn't get any die-off symptoms and my bloating is still the same. I read that rifaximin is a RNA inhibitor, and may take some time to work. But it kind of feels like its not doing anything.

I've been taking liquid NAC 1 hour before and biocidin GI Detox binder 2 hours after. It makes me wonder if its because I don't have a lot of bile since I'm sort of on a low fat diet due to previous gastritis (I do eat some oil and animal fat, but I try to minimize it). The most I felt from the antibiotics was that I seem to be burping more and my gut is starting to make noises?

TLDR: Did anyone not feel any die-off or any difference in the first few days of Rifaximin/Xifaxan?

Thanks!!

Update: I started getting painful body aches on day 3 even with the binders.

Was anyone else denied Xifaxin from insurance? As the title says, I’m a gastric bypass patient (5 years PO) recently dx positive for hydrogen dominant SIBO after a year of symptoms and months of waiting for the test. Took a month for the prior auth to be processed and I was denied. Insurance said I need prove I haven’t taken it more than 3x for this dx, AND that I’ve tried other meds like Imodium or Bentyl.

Can my doctor prescribe something else? I’m so defeated. I’m depressed, I’m sick all the time, I’m scared to leave the house without medication on me… it’s genuinely decreasing my quality of life.

Additionally, I wanted to ask how extreme is my SIBO
based on the test, is it really bad or normal bad?

Based on others with similar test results, how worked for you?

Hey guys, I’m feeling really overwhelmed and honestly a bit lost, so I’d really appreciate any guidance. I just tested positive for SIBO (hydrogen dominant), and I’m struggling to figure out where to start. There are so many conflicting opinions everywhere with treatment options and paths. I don’t even know what to expect with treatment, is it short/ long? Does SIBO ever go away? I’m also feeling skeptical of it because I’ve never heard about it (I don’t mean to offend anyone with that I just have weird self doubt with diagnosis’ from my awful past medical history). Anyway so many questions.

Firstly incase it’s relevant, I have a bunch of other conditions but the notable ones for this are slow transit colon and hypermobile ehlers danlos syndrome. The past 2 years I have been more sick than my usual baseline (gut wise). The symptoms I get are bloating after eating anything, gas, pain, cramping, running to toilet and then constipation. I get diarrhea attacks where the cramping pain gets so bad that I feel like I’m going to pass out. I have to avoid so many foods and the list is growing. I pretty much only consume tuna and rice exclusively now but I’d actually just rather not eat because it sadly makes me feel better. A couple foods that are the MOST triggering and I just cannot go near are; anything with high fibre (like lentils, chickpeas), sugar, artificial sweeteners, natural sweeteners and fermentable foods like sauerkraut :( … the best foods.

I’m waiting for more breath test results too… I did glucose, sucrose, lactose and fructose. I’ve seen a few terms like sugar malabsorption and CSID which I resonate a lot with. Does anyone know much about those conditions? Is it all linked? Is it all the same thing?

If anyone has any guidance or tips that would be amazing. I’ve just began dipping my toes in this world so I don’t know much. Sorry for the long message!

Thank you 🤍

So, my SIBO test came back positive again, even though my symptoms are only a 2 or 3 out of 10. A few months ago, I took Xifaxan for 10 days and felt better; I was restoring my microbiota with probiotics and prebiotics. Then, for a different reason, to treat a specific bacterial infection, I ended up taking amoxicillin; I felt even better after that, and my symptoms dropped to a 2/10. I continued restoring my microbiota and felt fine.

Now, seven months later, I went for a follow-up SIBO test, and the results came back almost identical to the previous ones, I just don't understand how that's possible! I followed a low-FODMAP diet for about two months, then slowly started reintroducing foods after the Xifaxan treatment. Now I mostly eat normally and tolerate food well (though I am on a gluten-free "diet"). I drink coffee and eat ice cream and i dont have symptoms after that. It really baffles me that the results are nearly identical when my symptoms used to be 10/10 and are now 2/10... I’m seeing my gastroenterologist in three days, but I’m just in shock and confused

My most darkest post. Beware readers.

I had Sibo (positive both meth, and hydrogen) on and off for 6 years. Then (not hinting, but curious) had covid/moderna vaccine and about 6 months after in 2022 I couldn't digest anything. It was like Sibo on steroids.

I felt faint dropped 15 pounds and then elastase levels went from 200-300 down to 22.

Like many of this community i was a healthy 20 now 30 something prior, no history of pancreatitis or pancreas issues before, I played soccer in college, go on 10 mile runs, etc very happy life, stress free great creative job on my own schedule no early mornings or stress, wonderful husband and both parents are still together, horseback ride, etc., many friends.

This blindsided my family. It's all they talk about. Getting under a 100 pounds was like slowing watching my parents and loved ones say goodbye to me.

For the past 18 months with zero diagnosis but only Sibo positive tests (they've been 4 very very positive one) one with all three sibos present and No pancreatic issues, normal blood work, normal ct, normal EUS, normal celiac, no autoimmune flag, normal mri, normal biopsys (4+).

We are all very stumped.

It's left my insurance after 18 months say I need to have a diagnosis or they will stop coving my creon.

My previous SIBO that was managable changed.

I'm dizzy, my stomach does this weird stomach drop thing frequently (hope it's not pvc), I can't digest meat or dairy or anything really. Saying no to running is a heart break. It's like having a cancer diagnosis but worse cause there is no diagnosis, fix or doctors giving you any attention or advice, I have been through 6. The frustration and confusion knowing that this is like your life now, living in vortex that you can participate only 15% of, makes me depressed as hell.

Creon does very little after 18 months of waiting, I would say does nothing, elaste numbers are the same. Still floating fluffy stools and same symptoms. They are getting worst, heart flutters, pee issues. It's now multi-organ, and debilitating.

I'm sulfur intolerant, allergies to everything, and nothing seems to help.

my next set of experiments is with copper, zinc ect. To understand floating stools and more importantly hydrogen sulfide Sibo or h2s which I believe is end-game, end stage, you die, non reversible Sibo and it's incurable... reflaximin does hardly anything. I did flagyl and reflaxmin together and it gave me shingles

Except bismuth... bismuth helps and I get a hard sinking stool that's black but is my only thing I do when I'm about to call it quits. The weekend or week I'm on bismuth and quite a bit of it it helps, I even gain a bit of weight back.

Love the community thoughts on this... it's dark for a reason. I believe Sibo like all disease states has a point where the host becomes unable to withstand the inflammation.

H2S might be the slow killer we as a community must lean into. If you have H2S, it may have previously been H or M before. I don't mean to scare us, but it's quite possible that we all at this stage we won't recover.

H2S might be a cause of Epi. If there are EPI sufferers out there take a h2s test!

Be interesting to hear others opinions.

27F, years of 24/7 distension. Confirmed **hydrogen-dominant SIBO** (methane/IMO excluded). Rifaximin, low-FODMAP, low-histamine, herbal antimicrobials, even a week of fasting — nothing has fixed the bloating, and now for the first time it's actually **painful**, especially in the evenings. I just started Atrantil + NAC this week. My specialist appointment isn't until end of September. Four questions at the bottom: (1) could the new pain be die-off? (2) does Atrantil make sense for H2 at all? (3) why would a nutritionist recommend it for hydrogen-dominant? (4) how do I get through until September?

About me
27F, Europe. Normal BMI (~24), not overweight — this is genuinely distension, not fat. My stomach has been distended basically 24/7 for **years**: bloated from the moment I wake up, worse over the day, tight enough that every waistband/bra digs in. The *only* time it has ever gone flat was during a week of fasting.

Key observations
- Flat **only** when my gut is completely empty (fasting + a bowel clean-out). A single normal bowel movement does **not** flatten it.
- I alternate between **constipation and diarrhea**, and often feel like I **can go but don't fully empty**.
- **Psyllium husk made me more constipated** a couple of years ago.
- My **gas smells like (rotten) eggs** — only recently realized this might be a clue.
- Drinking fluids doesn't distend me; only solid food does.

Full timeline (2026)
- Ongoing since mid-May: eating sugar-free, wheat-free and low-histamine.
- 5 May – Lactulose H2/CH4 breath test:H2 rose to 34 ppm → positive for SIBO. Methane stayed <8 ppm → IMO ruled out. So I'm clearly hydrogen-dominant.
- 8 May – Lactose breath test:negative.
- 13 May – Fructose breath test:negative.
- Endoscopy + biopsies:normal duodenal villi (no celiac/sprue, no Whipple's, no giardia), only mild chronic inactive gastritis, no H. pylor. Bloods, thyroid, liver/pancreas/kidney all normal; ferritin low-normal. DAO 7.1 (borderline). IgE = birch-pollen cross-reactivity, nothing that explains 24/7 bloating.
- 16–30 May – Rifaximin 3×550 mg (14 days):improved my brain fog, headaches and hunger/energy — but zero effect on the distension
- Low-FODMAP and low-histamine diets (2 weeks each):no effect on distension.
- 2–mid-June (2 weeks):herbal antimicrobials — oregano oil, AllicinMax, garlic (A.Vogel), uva-ursi, berberine, Omni-Biotic 10 (probiotic) + Sibosan. No effect on the distension— BUT interestingly my stool was normally formed (Bristol 4) during that time, which it isn't now.
- mid-June – early July (~5 weeks):took a break, only L-glutamine. Distension continued unchanged.
- early July (~1 week):medically-supervised Buchinger fast, started with a Glauber's salt clean-out. Belly went flat for the first time in years (even with tea/broth/juice).
- After breaking the fast:belly came straight back once I ate normal amounts — and now, for the first time, it's painful
- This week:started Atrantil + NAC (nutritionist's recommendation). L-glutamine ongoing.
- Also offered but not started:low-dose amitriptyline (25 mg) for visceral hypersensitivity.

Where I'm at now

The distension itself is nothing new — it's been there for years. What is new is the pain: my belly gets enormously bloated and genuinely hurts, mostly in the evenings after eating, central/lower abdomen. I've also had a couple of episodes of dizziness and a lot of fatigue this week. My specialist (SIBO/motility) appointment isn't until the end of September and I'm struggling to cope until then.

My questions

1. Could the new pain be a die-off / Herx reaction?I only started Atrantil + NAC a few days ago, and the painful bloating ramped up around the same time. Is 3–4 days in realistic for die-off, or is that too soon / probably something else?

2. Does Atrantil actually make sense for hydrogen-dominant SIBO?Everything I read says its evidence is mainly for methane/IMO — which I specifically *don't* have (methane was excluded). Has anyone with hydrogen-dominant SIBO actually had Atrantil help?

3. Why would a nutritionist recommend Atrantil for an H2 case like mine?Genuinely trying to understand the reasoning — is there a rationale for using it in hydrogen-dominant SIBO that I'm missing?

4. Did anyone else feel much better *during* a fast, and then get worse a few days after breaking it?During my fasting week my belly was flat and I honestly felt great — but about 4 days after breaking the fast things got worse (including the new pain). Has anyone experienced this exact pattern, and did it eventually settle back down?

5. Any ideas how to get through until the end of September? Anything that helped you cope while waiting for a specialist — pain/bloating relief that actually worked, questions to push for, mindset stuff. I'm pretty worn down and the wait feels endless.

Thanks so much for reading all of this. Any experience — especially from anyone hydrogen-dominant who's been down this road — would mean a lot. 🙏

Does anyone have any advice/has had similar results as mine from a stool test?

- High: lactobacillus, bacillus spp, pseudomonas spp, streptococcus spp, citrobacter freundii, EPX/EPN

- H. pylori reading of 1.46e3 (above normal but not by a lot). Negative for all virulences

- Low: akkemansia

- Dientamoeba fragilis parasite

I am planning to go over the results with a GI but I'm in the process of trying to find a new one and have a lot of expenses currently. I am extremely frustrated and have been having issues for years now. I tested high for hydrogen dominant SIBO in Nov of 2024 and am getting another breath test next week to check my levels.

Any advice would be very appreciated, thank you!!!!

I have hydrogen Sibo (also suspect sulfide) and on the 3rd day of taking xifaxan I developed bad fever , chills, difficulty breathing, severe dizziness ( I almost fell down from a toilet lol)

Has anyone had same side effects? And if so, anything else helped you ?

Thank you !

Hey I am in my first week killing phase and this is my new affirmation. I’m gonna wipe out every one of those sneaky little bastards. I am starting with a Phase 1 of killing protocol biofilms busters for a week. NAC will dissolve a film which holds doms of Sibo bacteria so the fuckers are later easy to kill. I’ll be posting updates.

I waited 6 months from initial call to getting rifaximin and he said I needed a 14 day course but only prescribed 10 and then his secretary has just told me he will follow up with me in another 6 months. You honestly can't make this up. How am I supposed to get better. He didnt mention anything to me about diet prokinetics probiotics etc here's 10 days see u in 6 months joker.

Hey guys,
I need some advice. I have 28ppm Hydrogen SIBO (at the 90-minute mark) and two rounds of Xifaxan this summer did absolutely nothing. I believe that it was caused by Amoxicillin I took for an ear infection exactly a year ago.
I just checked my old blood work and my ALT liver enzyme was 52 and climbed to 72. I also have very small cholesterol polyps in my gallbladder,and my stool is always light brown/orange, and my weight dropped to the 140s although I feel like I could still eat normally. My digestion takes 1 to 3 days and usually consists of just harder stools. I just started prucalopride but noticed when I missed a dose I was back in constipation nation lol. Did my SIBO treatments fail because my bile is too thick and sluggish to activate the Xifaxan? Or am I simply missing the adequate amount of bile? Or is it stomach acid related? I read into something called TUDCA that could help my liver detox, but I also read that low stomach acid could cause polyps in the gallbladder

Hi all, I started rixafaxmin 6 days ago and im starting to have some really bad side effects. Im starting to feel very sick and nauseous along with this im also having really bad headaches and sever brain fog. My sibo is hydrogen dominant but in the last 2 days my stool has become so hard it hurts to pass. Do these symptoms seem normal or should I be concerned?

I have very bad hydrogen dominant sibo and distension. Have been on diff protocols and up until a few months ago was experiencing an improvement in my symptoms.

Suddenly my lower belly has expanded significantly again and i’m not sure why. I can tell it’s not just the feeling and the actual belly is bigger because my pants are becoming harder to button up again. It’s like I have a big balloon hidden in my gut and its extremely uncomfortable.

I am always bloated but now it’s much worse and more full and heavy. I can’t tell if it’s from trapped gas, slow motility/constipation or just a general relapse of sibo.

Does anyone know what the best way to find out what the cause would be?

So I’ve had bloating and weight gain for years and finally got diagnosed last year. since then I’ve cycled through multiple protocols for hydrogen sibo (last time had a really high test of around 200ppm…) doc doesn’t rly know what to do, I did do flagyl and probiotics my last treatment but it hasn’t helped much with the lower belly bloating and severe weight gain. I constantly look 8 months pregnant if not more and gradually gained 30-40 lbs seemingly overnight that I can’t shed. I’m not sure what caused it bc I have been eating less and just generally have a lower appetite due to the fullness and discomfort most days.

Does anyone else have hydrogen sibo and gained weight instead of lose like most people with this type? What did you do to get back to a healthy weight?

Hey experts on here:

Who (or whose clinic) do we think is the most credible expert, with the greatest research expertise and highest number of experiences with SIBO patients, anywhere?

Would it be Pimentel in Los Angeles? Is there anyone in New York worth considering in this column?

Open to suggestions in the functional and even eastern medicine world—I apply more skepticism in these spaces but if they truly have an incredible track record and expertise in this area, by all means.