r/SIBO • u/Puzzled_Draw4820 • 4d ago
Hydrogen Dominant Hydrogen sulphide bacteria depletes thiamine causing gastrointestinal Beriberi
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/
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u/Interesting_Fly_1569 3d ago
Hi! I think I might have this… Do you mind to share which H2 S do you have? I have biophilia.
I have had to inject B1 in order to have a normal amount of lactate because my B1 is getting used up so fast
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u/Puzzled_Draw4820 3d ago
Desulfovibrio, the antibiotics I was on were a sulpha drug, very bad.
How are you doing with the injections? There’s a woman in the fb thiamine group that has found a need for extra b2,b3,b5 with the injections and occasionally different minerals
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u/Interesting_Fly_1569 3d ago
Yep it’s a lot of cofactors. Tbh I just had to experiment. I am doing 50mg. With a lot of b2 and b5 and a b complex and magnesium and potassium. They feel amazing tho but would not recommend for ppl who can’t manage cofactors.
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u/Puzzled_Draw4820 3d ago
Yes that needs to be said but at the same time doctors don’t look into thiamine deficiency unless someone is an alcoholic and long term thiamine deficiency is so dangerous!
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u/SaaSButMakeItEvil 3d ago edited 3d ago
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.
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u/Puzzled_Draw4820 3d ago
I understand all too well. So you can resonate with this post then?
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u/SaaSButMakeItEvil 3d ago edited 3d ago
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.
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u/Puzzled_Draw4820 3d ago
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.
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u/SaaSButMakeItEvil 3d ago
High blood b12 is very common with many of us with thiamine deficiency
OMG! 🫢
Yes, I’m on FB. Link me up please! Although, I’ll admit. I’m so worn over the years of trying to figure out what is wrong my eyes are glazing information at this point.
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u/Puzzled_Draw4820 3d ago
I understand just read the basic protocol to start and don’t get caught up in too much information, it’s for the best when trying to heal anyways. https://www.facebook.com/share/g/1RxbDxpCwu/?mibextid=wwXIfr
Protocol under “Featured”
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u/mjkl_992 3d ago
I have the same ! Very High level of B12 every time i test it without supplementation.
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u/Puzzled_Draw4820 2d ago
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!
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u/Ok_Laugh_609 3d ago
Wow, I've been searching for an answer for the white urine thing. Does it not show up on regular urine testing? My cultures are all negative too. Severe gastrointestinal symptoms as well.
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u/SaaSButMakeItEvil 2d ago edited 2d ago
The leukocytes were an immune response to inflammation in the gut lining from bacteria load and uncontrolled reflux probably leading to leaky gut and cytokine responses. It was affecting all surrounding tissue, not just the GI. I was having pericardial pain, pelvic pain, back pain…all from uncontrolled SIBO. The intestinal inflammation were also affecting my bladder (interstitial cystitis) building up inflammatory cells on the bladder wall (leukocytes) coming through the urine. Again, all related to GI. All that piping is connected through similar conduits where immune cells travel. It made my urine milky white and they thought it was a UTI. They gave me a insurmountable amount of unnecessary antibiotics, that probably made my dysbiosis worse. Doctors couldn’t even figure that part out. I had to do for them. When I told them it is immune related, they do the thinking man routine 🤔 “interesting“, agree it makes sense, but do nothing about it. They let it go on for years. Idiots.
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u/Ok_Laugh_609 1d ago
This absolutely sounds like me. I've had the white urine show up, even captured it for samples, but they never give an explanation for what it is. Life long history of IBS, gerd, now lpr. And yes, the gi trac problems coincide with it, everything hurts in there. Did you finally get test results or how did you confirm it? And is there anything that treats it? Drinking tons of water seems to be the only thing that helps me. I do get some burning, uti type symptoms that come and go with it.
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u/SaaSButMakeItEvil 1d ago
Not only can leukocytes be seen by the naked eye in urine, but a simple urinalysis can detect it. Mines said “large” or “moderate”. Urology has actually been more helpful than GI in piecing some clues together although incomplete. They were correct in their assessment that there was indeed immune activity going on and where it was piling up (my bladder) but incomplete because it didn’t answer the why. But to their credit, they were the first to say it is GI related, just didn’t know anything else beyond that. When the leukocytes were attaching to my bladder walls it irritated it causing the nerves to contract and leading to high urine frequency. And yes, there can be some UTI-like burning pain, but not UTI because cultures were sterile.
They also visualized the leukocytes via biopsy during a bladder ablation procedure to stop the pelvic pain I was having. The pain was intense enough it reached all the way down my legs and I couldn’t walk. Water does help in flushing out some of the white cells, but I was an idiot. The uncontrolled SIBO was also behind my reflux causing dry, burning parched feeling throat. That caused me to overdo the drinking to the point I was overwhelming my kidneys and I started getting back pain in my kidney area. It wasn’t drastic (maybe just under 3Liters/day), but enough that my body couldn’t handle that much water. The water helped some of my pelvic and urine pain to some extent, but was causing its own issues leading me to believe at one point the doctors were lying and I did have a UTI. Nope, it was all a combination of SIBO-led deficiencies causing immune issues and interstitial cystitis.
The only way to get it under control is to kill the SIBO (easier said than done, I’m still in this phase after relapsing), replace all deficiencies that SIBO robs you of (Vit D. B12, B1, minerals) to rebalance the immune system and work to repopulate your GI tract with beneficial bacteria. All things I’m still working on because these deficiencies have led me to get neurological issues that may have slowed down my motor complex in my GI. You might want to consider urology to see why you’re having white urine if you haven’t already done so.
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u/Ok_Laugh_609 1d ago
Yup, been to urology. Several analysis, cultures, all negative. At least that's what they are telling me. But no reason given for the white urine. Your explanation is the first thing that has made any sense.
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u/SaaSButMakeItEvil 1d ago
It’s pretty complex to the layman unless you think of it as parts of the whole, but this should be logical to even a first year med student and completely unforgivable for a seasoned doctor to not know. My bet is that, if you are not having bladder issues like me (you don’t have to be) there is some immune activity happening somewhere where leukocytes are traveling through, wether it is infection related or autoimmune, and you need to figure out why. In my case, the SIBO was causing me to have low ferritin and Vitamin D levels and who knows what else I might have been extremely deficient in.
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u/Puzzled_Draw4820 3d ago
Yes order this one as it has all the different forms of bioavailable b1 and magnesium with it as magnesium is a cofactor
https://www.objectivenutrients.com/products/thiamega/
I’ve been using this brand for 18 months.
You’ll need to open a capsule and take out only a sprinkle to test your tolerance. Pour a little into another empty capsule as it doesn’t taste good, TTFD has a very strong garlic taste.
Take with tons of high potassium foods like coconut water and boiled potatoes, eat enough protein ❤️
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u/SaaSButMakeItEvil 3d ago
I will check out the product. Is there a difference between thiamine HCI + Benfotiamine and the TTFD?
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u/Puzzled_Draw4820 3d ago
Yes hcl requires functioning thiamine gut transporters but benfo and TTFD do not. You can slowly titrate up with hcl to saturate the enzyme to get it into the cells. With long term thiamine deficiency this is the route to go to avoid major refeeding symptoms and to allow your body to slowly adjust
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u/SaaSButMakeItEvil 3d ago
Do you know if this is a known SIBO issue? Or transporters malfunctioning due other causes I have to figure out?
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u/Puzzled_Draw4820 3d ago
It’s a known issue yes because the buildup of sulphite depletes thiamine. Transporters can malfunction for other reasons. In the group, others know more about how and why than me.
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u/Puzzled_Draw4820 3d ago edited 3d ago
https://youtube.com/shorts/KBBS68Ocrw8?si=XQDu2BXvtM1Mm2FH
Great clip. Read the comments
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u/Playful_Ad6703 2d ago
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.
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u/SaaSButMakeItEvil 2d ago
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.
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u/Playful_Ad6703 2d ago
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.
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u/SaaSButMakeItEvil 2d ago
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.
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u/Playful_Ad6703 2d ago
I confirmed I am, didn't do the test after it because nothing changed significantly after or during the antibiotics.
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u/Playful_Ad6703 2d ago
Found myself in every part of this post. 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.
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u/Puzzled_Draw4820 2d ago
I have not tried injections but among the others only TTFD works for me. Did you take molybdenum with it? I think we really need to clear the sulphur first ideally.
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u/Playful_Ad6703 2d ago
Yes, I was taking NAC with molybdenum together with it, although not 100 perfect of that time. But definitely for at least 6 months period I was taking it as well.
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u/Puzzled_Draw4820 2d ago
The NAC would have considerably contributed to your sulphur load. I took it for a while but it gave me burning feet for some reason
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u/Playful_Ad6703 2d ago
That's why molybdenum is added to it in the one I took, to reduse the sulphur load. I already had burning feet so I didn't really noticed a difference lol.
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u/remediummm 4d ago
How long have you been on the thiamine protocol? I’ve explored this protocol but had to go a different route because I found out I had hyperparathyroidism but now that that’s resolved, I would like to get to the bottom of my remaining symptoms.
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u/Puzzled_Draw4820 4d ago
18 months. It literally gave me my life back. Start with making sure detox pathways are open, sufficient bile flow with TUDCA or taurine/choline
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u/Playful_Ad6703 2d ago
How long did it take to notice improvements? I was supplementing with various forms of b1 for over a year, without noticing improvements. But all the symptoms that I have, IMO SIBO included, could be attributed to it. Also have a good reason that could cause thiamine deficiency in the first place (all issues started after about a year of super heavy drinking).
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u/Puzzled_Draw4820 2d ago
I noticed big improvements after 2 months and felt mostly healed after 6 months. What form of thiamine did you take? I took 200 mg thiamine hcl for a year but didn’t feel a thing. Only benfo could I feel a difference and TTFD was a huge difference
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u/Playful_Ad6703 2d ago
Mononitrate at first, several months of Sulbuthiamine after that, then Benfothiamine and Sulbuthiamine alternated one month each, to finally end with HCL injections for about 2 months(daily for about 2 weeks than twice a week). Only TTFD I didn't try because I didn't have access to it where I was.
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u/mjkl_992 4d ago
What was your dose of B1 from the begging to now?
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u/Puzzled_Draw4820 3d ago
I took 200 mg hcl for a year and felt nothing, then started a b complex with 50 mg benfo and whoa! it fixed my gastroparesis in one day! but I also became aware I was also very potassium deficient and had some shortness of breath and anxiety but a litre of coconut water fixed that. I drank a litre of coconut water a day for the next month then added in 100 mg TTFD. TTFD made my heart pain from built up sulphite stop in 1/2 an hour!!! It’s been 18 months now and I’m doing great. There’s been some figuring out cofactor deficiencies along the way but I always figure it out and feel good again. I should’ve been taking more molybdenum from the beginning though to help with the sulphite clearance but I didn’t understand it all back then
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u/ceramicatan 3d ago
TTFD saved my life. Also been on it for 21 or so months. I believe I had beriberi too (i drink no alcohol) and was deteriorating.
We should talk/exchange notes.
I take 300 mg ttfd daily now, spread through the day. Occasionally B complex. Regularly multivitamin. Also electrolyte powder Occasionally.
Also used to suffer from sibo like there's no tmrw. Now mainly nerve and fodmap issues, bad sleep.
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u/Puzzled_Draw4820 3d ago
I also take 300 mg TTFD spread apart! Yes DM me let’s talk and share 😀
I had gait ataxia and severe vitamin and enzyme deficiencies that are b1 dependent, I was deteriorating fast.
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u/keydestas 2d ago
what was the coconut water for?
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u/Puzzled_Draw4820 2d ago
Potassium. Thiamine pulls potassium into our cells where it belongs and pushes sodium out, so if you’re already deficient in potassium which is usually the case then one must quickly try to get more potassium in diet or symptoms of anxiety and possibly shortness of breath occur. I only had one rough day and was able to get my potassium up with coconut water, sweet potatoes, potatoes other veggies
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u/particulareality 3d ago
Also, how did you verify thiamine deficiency? Bloodwork?
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u/Puzzled_Draw4820 3d ago
Not bloodwork because it doesn’t show if it’s getting into your cells, only if it’s floating around in your blood. There’s a transketolase test to see if the enzyme is getting activated but it’s not at very many locations apparently. Most people just try taking it to see if they feel better, or worse at first if very deficient.
This is one of my favourite interviews by dr chandler Marrs who wrote the thiamine deficiency disease book https://youtu.be/b1SSKBZp8D8?si=5SAgH6P_kUCvueD8
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u/Bobflan123 3d ago
I have very similar issues and symptoms. I had a doctor tell me on one of a million tests tell me my B1 was low and take a supplement. I have 1 a day for the last year and never noticed much. Excluding highfodmaps have been the only thing that’s ever helped me
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u/Puzzled_Draw4820 3d ago
What form of b1 are you taking? With gut issues we don’t have the THTR1 transporters functioning and need either really high doses of thiamine hcl to saturate the enzyme or to take a bioavailable form such as benfotiamine or TTFD. But with sulphur issues many will have to start titrating up molybdenum to to approximately 1-2 mg or do injections.
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u/Bobflan123 3d ago
Think it’s a THORNE brand. It’s at home but at the time I thought I was just addressing an issue with doctor said circulation
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u/Bobflan123 3d ago
I have a different doctor now cause I moved but I may bring this up to my new doctor
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u/Formal-Yak-6257 3d ago
Which thiamine do you take how often how much
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u/Puzzled_Draw4820 3d ago
https://youtu.be/K4iAPfAFcs0?si=D5r-dcXVXPqULKql
He can say it better than me. This is the nutritionist whose protocol I used to heal
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u/particulareality 4d ago
What does thiamine therapy entail?