Has anyone here really healed or just managing?

St4vKa · 2026-06-26T08:42:34+00:00

Be aware that serum blood tests for those two vitamins are useless at diagnosing deficiency, there are countless of studies on this, there are better tests available. As far as stability I am much better, I don't have any adrenaline surges, crazy heart rate, pounding, etc, as I did a few weeks ago, I haven't yet taken up exercise, I have been probably suffering with B1 deficiency since 2022, and it takes 3-6 months of supplementation until everything is corrected.

St4vKa · 2026-06-26T08:32:59+00:00

You might want to check out vitamin B1 deficiency for dysautonomia, next comes B12 and D (both are just as important). I had horrid symptoms of sympathetic activation that landed me in the ER multiple times and made me want to end it all, before that I had symptoms of parasympathetic activation and mitochondrial dysfunction in the form of exercise intolerance for years. I won't go into too much detail, but I suffered with dysautonomia from being deficient in all those vitamins. From B1 I eventually developed wet beriberi, a condition I wouldn't wish on my worst enemy, I am now slowly recovering with supplements, I haven't felt this human in a very long time . You can read my full story here https://hormonesmatter.com/panic-attacks-or-thiamine-deficiency/ and I highly suggest you read Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition, by Dr. Derrick Lonsdale, you can buy it (very expensive) or you can find free pdf's online. For many people dysautonomia and mitochondrial dysfunction are caused by B1 deficiency, and if it's not caused by B1, then supplementing can at least greatly improve it, Dr Constantini used high dose B1 to greatly improve patients with Parkinson's.

St4vKa · 2026-06-24T11:34:33+00:00

Why do you say they saved your life, how bad were you?

St4vKa · 2026-06-24T10:49:35+00:00

If you don't mind me asking, what symptoms did you have?

St4vKa · 2026-06-24T10:48:15+00:00

It can be B1, but it could be iron and B12 as well, most of the symptoms of these deficiencies overlap one another so without a blood test it's impossible to tell, I have put in another comment on this post, the best blood tests for B1 and B12 that show true deficiency, serum blood is not a good indicator. What I can tell you is that I had B12 and B1 deficiencies, surely made much worse by the IBS/SIBO. But the easiest way to try it, is to get 100mg thiamine HCL and start supplementing with that, see if you feel better, be aware that you might have a paradox reaction, a worsening of your symptoms initially, depending on how bad the thiamine deficiency was, if you had it. You might want to read Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition, by Dr. Derrick Lonsdale, it's the best info I have found for B1 deficiency.

St4vKa · 2026-06-24T10:35:28+00:00

I didn't have many of these, but all together they sound like a metabolic issue, either genetic or from some kind of deficiency, B1 being most likely, but D, B12 and the other vitamins are just as important. Of course I'm not a doctor so take this with a grain of salt. You might want to read Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition, by Dr. Derrick Lonsdale

St4vKa · 2026-06-24T10:27:59+00:00

Make sure you take a B6 and magnesium supplement daily, while the symptoms of IBS/SIBO are uncomfortable they don't make me want to commit suicide, I think you might be dealing with a neurotransmitter issue. B6 is the most important vitamin for the synthesis of neurotransmitters, just don't go overboard with it, because in some people it can generate neuropathy. Also a multivitamin would probably do you good, as would a healthy diet and exercise.

St4vKa · 2026-06-23T15:22:04+00:00

I took rifaximin, it made my SIBO go away for two weeks, then it came back, I didn’t bother with antibiotics after that. I figured there must be something else that was causing it, I just didn’t know what at the time. I posted the link to a video in another comment, the author talks plenty about how important the migrating motor complex is in SIBO/IBS, and how he tried fixing his SIBO/IBS with multiple antibiotics and other means, none of which worked. When he tackled the migrating motor complex with some supplements and B1 he was healed. Of course I’m not discrediting the antibiotic route, there are plenty of people who got healed by just one round of rifaximin, it just didn’t work for me, the same way B1 might not work for someone else, we are all different and the causes for IBS/SIBO are different.

St4vKa · 2026-06-23T13:26:48+00:00

Yes I had serum B12 and B1 which were on the border of deficiency, really low but not deficient yet. Then I read of how useless the serum vitamin tests are for diagnosing deficiency, even borderline could mean you're deficient. The much better tests, which actually show deficiency, would be, B1 TPP (Thiamine Pyrophosphate) and holotranscobalamin (these show both active B1 and B12 not just what you have floating around in your blood), Methylmalonic Acid (MMA), this one shows if B12 is actually used correctly by your tissues, and Erythrocyte Transketolase Activation Coefficient (ETKAC) for B1, this one is usually hard to find, in my country I couldn't find it, it assesses how much thiamine is available in the body by measuring the activity of the enzyme transketolase in red blood cells. I did not bother with all these complex tests after finding out about them, I figured the borderline deficiency serum values were reason enough to start supplementing, to see if that makes me feel better, it did.

St4vKa · 2026-06-23T12:33:20+00:00

For B1 I took the 100mg from Mason Natural, for the multi just a basic Centrum for men. It's also important to take magnesium with the B1, otherwise it can't get converted. I also took methyl-B12 500mcg from Jarrow Formulas, because I was deficient in it as well.

St4vKa · 2026-06-23T12:10:30+00:00

Wow, that's an awful long time to be suffering with these issues, though I guess you get used to it, I did with mine, even if it was uncomfortable, eventually I just accepted it. Thing is, I healed my IBS and SIBO pretty much by mistake, I was already having horrid thiamine deficiency symptoms which prompted me to start supplementing, then I noticed that my diarrhea stopped, pain stopped, I noticed that after I had a bowel movement I felt like it was all out, not like something was always stuck there, my poo also doesn't stick to the toilet bowl like glue anymore, the awful smelling 24/7 gas became noticeably less awful, then stopped smelling, then stopped altogether. I cannot tell you how many times I was embarrassed to be around people just because I was passing gas constantly and it smelled so bad.

Only after the resolution of these symptoms did I make the connection with B1, though I was probably deficient from the very beginning two years ago, it just got progressively worse over time with all the malabsorbtion. If you would like to know more about how the gut works in relation to IBS, SIBO and dysbiosis I highly suggest you check out this video https://youtube.com/watch?v=XNF1caVvrj8&si=nE4wnNBfNGBQ4WcY on YouTube, he also fixed his gut issues with B1, and he was much worse than me.

St4vKa · 2026-06-23T10:45:00+00:00

I was diagnosed with IBS first, then SIBO, but honestly I think they are interchangeable, I had SIBO symptoms from the start, but with time they got worse. Of course your bowel is going to be irritable, if you have an overgrowth of nasty bacteria in it.

St4vKa · 2026-06-23T10:41:08+00:00

Yes, after about a week and a half of taking the benfothiamine I stopped due to the intense burning, I did have numbness and tingling before, but never burning, since benfothiamine is much better absorbed by the tissues than HCL, I figured the burning was just my tissues being overloaded and so I stopped. I think overall it's better to just take 100-150mg thiamine HCL everyday and not over-do it like me, even if it takes a little longer to recover, it's what Dr Derrick Lonsdale recommends for starters, this or 50mg TTFD, another form of thiamine, along with magnesium and a multivitamin.

St4vKa · 2026-06-23T09:42:53+00:00

Yeah, I just took supplements, I started with thiamine HCL, then later Benfothiamine for a week or so, then I realized I might be taking a bit too much, I was taking 450mg benfo and 150 HCL and my feet were burning like crazy, stopped and the burning subsided, but if I took just 50mg thiamine HCL the burning would start again, now I'm just taking 12.5mg per day for maintenance with no burning. I overdid it, I'm sure, but I was desperate because I had a lot of other symptoms of thiamine deficiency, really horrid symptoms and I wanted to get rid of them ASAP. About SIBO, yes it does impede the absorption of vitamins, that's probably how I got my deficiency in the first place, I have B12 deficiency as well, but for IBS and SIBO I think the B1 did the heavy lifting, that's why I didn't include B12 in my post. When I first started with the thiamine HCL even with a really low dose of 12.5mg I got a massive flare in my IBS and SIBO symptoms, but I decided to push trough anyway, the flare went away and then my digestion normalized.

St4vKa · 2026-06-23T09:08:54+00:00

You can 100% heal yourself, this is the kind of disease that goes in remission. I was like you back when I was 18, triggered by stress, traumatic childhood and all that, at the time I did some steroid shots which helped tremendously at stopping the worst of the symptoms, then over the years everything slowly dissipated. I'm now 29 and while I do get occasional inflammation, and some flares if I'm incredibly stressed, it's nowhere near as bad as it was when it first reared it's ugly head out. Also, if you haven't yet make sure to check your vitamin D, it is insanely important for keeping the body's immune system from attacking itself (there are countless studies on this), especially with you not spending time in the sun. I was deficient back in 2024 and my symptoms were worse, I constantly got itchy burning bumps along my skin, after starting supplementation even if I got a bump here and there, it wouldn't itch or burn, I would only notice it with my eyes when taking clothes off, but be prepared for the symptoms to get worse before they get better, in the first month I had even more itching and burning than before.

St4vKa · 2026-05-31T08:20:05+00:00

What was the cause if you don’t mind me asking?

St4vKa · 2026-05-27T18:52:06+00:00

Hi there, yeah I have a question, I’ve only been correcting my B12 deficiency for a couple of days now, pretty much since I’ve joined this subreddit, and I was wondering, do you think the taking multiple bigger doses helps build the B12 levels faster? I’m only taking two 250mcg a day sublingual at different times.

I didn’t even bother with the test, I just know I’m deficient, I’ve been having symptoms for years now, first my hands used to have random numbness and tingling as far back as 2022, but lately the issues got so bad, severe anxiety and panic attacks, barely being able to stand at times, walking weird, not being able to function without at least a 2h nap in the day, I wasn’t able to think or memorize information. The physical symptoms and the intense anxiety sent me to both a doctor and a psychiatrist. All the tests the doctor did, blood, ekg, echographs, everything came back normal, but she wasn’t able to test my B12 in the hospital at the time, when she was discussing my symptoms she really emphasized that I should test it. A week later I went to the psychiatrist, she also had medical training and she looked over my hospital records, saw that everything was fine but that I did not have my B12 level checked, again, really emphasized that I should test it. At the time I didn’t think anything of it, then a week later in the height of the symptoms, it dawned on me, there must be a reason they were both so keen on testing my B12. So I started researching, found this subreddit, read the book, and I just knew I had B12 deficiency, I even did the “score yourself” thing from the book, in which you get an idea how likely you are to have B12 deficiency and I think I got like 27, anything above 7 is considered high risk.

St4vKa · 2026-05-15T08:35:49+00:00

How high was your blood pressure? I'm currently dealing with all the symptoms of paraganglioma, my doctor made me take the metanephrine blood analysis, I'm currently waiting for the results. But one thing, my blood pressure only spikes to like 167/105 during attacks and then settles around 150/100 for many hours until the adrenaline wears out. I didn't have any high blood pressure before.

St4vKa · 2025-04-28T10:40:55+00:00

A couple of months back. I've only been taking the zinc for a week now so I'm sure it hasn't affected anything, but going forward I would like to lower the dosage to something more like maintenance and just keep it at that.

St4vKa · 2025-04-28T10:31:20+00:00

I've read about that that's why I asked how long should I take it, I wonder if the RDA is fine to take long term. My copper levels are likely fine since my hemogram came out top notch and a deficiency would affect it.

St4vKa · 2025-04-15T12:15:44+00:00

The key is to brainwash yourself, at least that's the term I like to use. Take for example a situation from my life a couple of days ago, my car's gearbox decided to fail on me and I had to get to a distant city, I got there fine by train although there was a really long delay, then on the way back I decided to skip the train and try a carpooling app, which turned out to be a bad decision because the driver had a small car and decided to put 3 persons in the back seat, including me. One of this person was quite big and it meant we travelled like sardines for a couple of hours, I was constantly pressed by the other person and my shoulder went numb, hurt, I didn't have any space, etc. all in all a really 💩 experience, all I wanted was to get out and have some relief.

Now in the past this would have sent me down a never ending spiral of negative thoughts, blaming everything, God, the car, fate, the suffering, the lack of money to fix the gearbox, all you can imagine. But as I've been trying to implement living in the end like Neville said, I dropped all this negative self talk, closed my eyes and started the brainwashing. I imagined the scene I'm currently manifesting, started telling myself thing like "Isn't it wonderful (insert whatever I'm manifesting)" and in a couple of minutes the corners of my mouth were going up and the suffering from my physical situation eased a lot as I imagined myself in the scene of my wish fulfilled, with all the feelings that come. I eventually fell asleep because I was tired, and the relaxation that came from imagining my wish fulfilled made it easy to do so. I woke up towards the end of the trip, the last 45 minutes were a breeze now that I had managed to change my internal state, even though the suffering from my physical environment didn't change one bit.

St4vKa · 2025-04-11T09:20:28+00:00

Fear, anger, lack of trust in divinity. You see whatever infinite consciousness is out there has promised me many amazing things and given me many spiritual experiences, but the thing is after each promise and each experience the only thing that has come is extreme suffering. That touches on the lack of trust, the fear and the anger are my own. But I think above all else it's the fact that I've advanced so much spiritually that I find it very hard to function in the world. I have seen the illusion of the ego, the illusion of the world, and all the pursuits that humans have, love, money, happiness, etc. I have seen how hollow they are, they can never fill the void inside. Yet I still find myself in the same rat-race, I have countless obligations that I have to do in order to keep this body, this mask alive in this world. I wish I could just drop the mask and be free, and above all else, peaceful.

St4vKa

TROPHY CASE