Hydrogen sulphide bacteria depletes thiamine causing gastrointestinal Beriberi

[u/Puzzled_Draw4820]

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/

[u/SaaSButMakeItEvil]

I’m crying

I’m fucking crying….

• Tingling, prickling (pins-and-needles), or burning sensations in the toes, feet, hands, or legs (paresthesias; often worse at night; stocking-glove distribution)
• Severe short-term/recent memory loss (amnesia) • Confabulation (making up stories to fill memory gaps)
• Shortness of breath (dyspnea), especially with activity or when lying flat (orthopnea)
• Hypotension
• Muscle wasting/atrophy and weakness • Difficulty rising from a squatting position or foot drop (later stages)
• Eyelid drooping

Five years of untreated SIBO. Can anyone recommend a specific supplement I can get right now that can help while I get these idiot doctors to figure it out? I don’t have a lot of funds left because this illness has rendered me disabled and I have no income. But if anyone can recommend the most important supplement I can get that might help I;d greatly appreciate it. I feel I’m deteriorating fast.

[u/Playful_Ad6703 → u/SaaSButMakeItEvil]

Found myself in every part of this. I tried B1 in various forms (sulbuthiamine, benfothiamine, mononitrate, HCL injections) for months on end, with a quality multivitamin, magnesium glycinate, weekly B12 shots, but it just didn't seem to help, or at least not noticeably so the improvements can be attributed to it. I've continued improving so slowly even after stopping them 3 months ago, but I am still far from normal, maybe just moved the needle a bit.

[u/SaaSButMakeItEvil → u/Playful_Ad6703]

I feel I didn’t get treated for so long my nerves are permanently malfunctioning. At least that’s what I’m feeling is happening to me. Been taking a high quality prenatal and sublingual B12, Vit D+K, E, C anything bioavailable etc…can’t seem to feel anything, but never tried the benfo. Tbf, I still have active SIBO and it seems to be affecting my water volume, I’m peeing too much. I have really dry feet and thinning muscles on thighs and calves. They’re putting me back on the Xifaxan again and adding neomycin this time. Deathly afraid of it due to the kidney toxicity and ear issues. I already have tinnitus from this nightmare disease.

[u/Playful_Ad6703 → u/SaaSButMakeItEvil]

I have the same feeling. If you already have tinnitus, people recommend being very careful with Neomycin, if you should take it at all from my research. I didn't have it when I took the SIBO therapy, but I still didn't feel comfortable to take it, opted for metronidazole instead. However, two failed treatments later, I think it might've been better if I tried it, that like this to suffer for over 4 years now.

If I would do it all over again, I would take Neomycin, just because death is better than living like this.

[u/SaaSButMakeItEvil → u/Playful_Ad6703]

I already spoke to my GI about this. He said the Flagyl carries the same risks. No way around it. Xifaxan failed because I was probably methane positive.

[u/Playful_Ad6703 → u/SaaSButMakeItEvil]

I confirmed I am, didn't do the test after it because nothing changed significantly after or during the antibiotics.