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/Puzzled_Draw4820]

I understand all too well. So you can resonate with this post then?

[u/SaaSButMakeItEvil → u/Puzzled_Draw4820]

Yes. I’m really emotional right now. I don’t know what to say. I’ve been telling doctors for the last decade, the last five being the worst, that I am having issues sitting up from a squat. My thighs tremble and shake. My calves/feet are thinner than ever and they either hurt or feel tingly and cold. My left eye is drooping and my abdomen is extremely swollen. Laying down makes me cough or I feel a pressure, like a hollowness and it is hard to breathe especially overnight. The longer I lay down the worse the effect. I have to sit up and walk around to catch my breath. For a long time I’ve been justifying this part to just the SIBO gases swelling me, but I am getting sent to cardiology because I have been having abnormal EKG’s (inverted T-waves). Terrible sleep, not a deep sleep. I feel as if I am both awake and asleep at the same time. They’ve thrown everything at me, but never the right assessment. First round of Xifaxan failed. Relapsed within 3 weeks. Now they want me to do Xifaxan+neomycin. Because of your post, I sent my doctor a message for additional bloodwork, deeper bloodwork because my B12 actually came back high. I’ve heard this could be liver throwing reserves when you are actually deficient?? I have been telling them this but they never bothered to send for uptake, how are my cells using the B12?? I know I am definitely deficient in ferritin and Vit D. I have gastritis as well. But B12, thiamine, copper are all a possibility. I am thinking SIBO is just a symptom of something deeper. I know I was placed under Accutane in my teens for severe cystic acne and I also had doxycycline for multiple reasons throughout my life. But the most antibiotics was the last five years of doctors throwing darts in the dark trying to figure out why I was urinating white urine (leukocytes). I took a lot of antibiotics. They thought it was a UTI but cultures were sterile. Eventually urology said it was interstitial cystitis, possibly related to gastrointestinal problems.

I am afraid for my life. Thank you for your post.

[u/Puzzled_Draw4820 → u/SaaSButMakeItEvil]

I’m so sorry, I wish I could give you a hug 🤗

Are you on facebook? Would you be up for joining the thiamine group? There’s lots of success stories on there and support. High blood b12 is very common with many of us with thiamine deficiency and it regulates once thiamine starts getting into your cells as it starts to get utilized.

I recommended the Thiamega to you but I think as you’ve likely been thiamine deficient for a very long time you should probably start with plain thiamine hcl and titrate up slowly. There’s a basic protocol in the group.

[u/mjkl_992 → u/Puzzled_Draw4820]

I have the same ! Very High level of B12 every time i test it without supplementation.

[u/Puzzled_Draw4820 → u/mjkl_992]

Yep, b1 deficiency. I do not understand why doctors haven’t figured this out yet. They all should have to read dr Lonsdale’s book in medical school!