breathing easy with thiamine

Breathing Easy With Thiamine Pyrophosphate

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This is a strange and somewhat disgusting story about how a few B vitamins have worked better than a wide range of antifungals for chronic diarrhea and a long list of other symptoms that developed over time. In addition to chronic diarrhea, air hunger/difficulty breathing, foot drop, other classic symptoms of thiamine deficiency were present but not recognized by physicians. I discovered and have begun correcting my thiamine deficiency on my own with some success. Hopefully, the reader will see some unique solutions in the account, as I’ve had very significant degrees of success with the various treatments in the attempt to overcome this condition. For anyone else who thinks there is a better way, I’m all ears in the comment section. I’m not recommending anyone try what I did, I’m just providing an account of my situation and what I regard as some success.

Raw Veganism and My Slide Into Poor Health

When I was in college I read a recommended book called “fit for life.” It recommended a radical shift to all raw veganism. It advocated dropping meat for cashews, addressing concerns for protein adequacy with quotes such as “and if (as a result) your fingernails fall out, they will grow back in even better.” I was extremely healthy, athletic, and had everything to lose, and I did lose everything following that advice. Mind you, I wasn’t doing it to spare the animals, I just thought I’d have some crazy edge on being healthy.

At some point while on this diet, I developed chronic diarrhea. Maybe some of those fantastic raw veggies were contaminated or maybe my immune system was compromised from other possible resulting nutrient deficiencies. Whatever the reason, I was stubborn and foolishly didn’t take the obvious net result of that lifestyle choice into consideration and I got used to living with severe diarrhea. By the time I had shifted gears and started getting things like salt, heme iron, complete protein, etc., I discovered that the symptoms remained.

At the height of my illness, I would have to run to the bathroom seven times a day. I’ve had plenty of jobs where that causes a lot of problems. I finally went to the doctor because it was so bad. My stools were bright yellow, so they were submitted for a stool pathogen test. It came up negative. He made an appointment for me to see a specialist in 6 months at the earliest. I was desperate, but I took the 6 months to wait and did not try and fix the problem myself. Maybe that was a mistake, but then again, I was never loaded up with antibiotics on a whim, so who knows maybe it was a blessing.

The Progression of Thiamine Deficiency Symptoms

Diarrhea and discolored stools began 20 years ago when I began the raw vegan diet. I was on this diet for a little over two years, before I changed course and began eating meat again. Since starting the raw vegan diet, and over the course of time, either more symptoms developed, or I just became more aware of them. The symptoms included breathing difficulty or air hunger, seemingly less sweat, and very frequent urination at times. In addition, I seemed to get cold easily despite having very high concentrations of the thyroid hormone triiodothyronine (T3) on lab tests. I also have bleeding gums, very sore soles of my feel (it is almost impossible to walk on a beach covered in seashells), significant loss of visual acuity in my left eye, a pronounced sense of difficulty keeping my eyes straight when tired, and an occasional sense that my feet are dragging. My foot would occasionally drag on the ground as if I had neglected to move it properly. I feel that I have a greater sense of the right side of my body over the left. During this time, I also noticed a reduction in earwax, particularly in my left ear, a reduction in fingernail growth, at least compared to when I was in college, and I sense a dullness where either my spleen, pancreas, or stomach is. My skin was dryer, and no longer oily. Often, I would have dandruff. For a long time, I could get dizzy upon standing. Also, I realized the constant body aches I felt were always present and not the result of delayed onset muscle soreness from my regular training. I was tired all the time. People would tell me it’s healthy to sleep if I was tired, but I found I felt just as bad sleeping 12 hours as I did after sleeping 4. I could sleep 17 hours, get up to eat, and go back to sleep. It was ridiculous, not to mention I had to economically survive, so instead of sleeping all day I began working 2 and 3 jobs at a time and resolved to spend the money experimenting on supplements.

Discovering Thiamine Deficiency

In addition to the stool test for pathogens that came up negative, I got a Spectracell test to assess my vitamin status. I was beginning to believe that nutrient deficiency was involved in my illness. After all, two years of a raw vegan diet, I lacked a number of critical B vitamins. I chose a Spectracell test, as opposed to a standard blood test because it is supposed to be more accurate. The makers of Spectracell argue that standard nutrient blood tests are inaccurate because they only show what’s in your blood at the moment, whereas the Spectracell method feeds nutrients to a culture of your white blood cells and extracts nutrients one at a time. If the culture dies too early from withdrawing a nutrient, they say that you need that nutrient. My test said I needed thiamine and vitamin B5. I don’t know if the usual vegetarian deficiencies were present at any time, because I had long since thrown supplements such as methyl folate, methylcobalamin, and Albion iron in a bid to resolve the problem, none of which had any effect after extended use. My testosterone, as of 2 years ago, was at 650 ng/dL. Every blood sugar test I take at the supermarket, says I’m in the normal range, but I exercise regularly. Supermarket blood pressure readings are never high, always in the low to normal range.

Successes, Failures, and Odd Results

If you managed to make it through the symptoms section, this part should be a relief as I’ve had a lot of success, some of which helped but had to be discontinued for one reason or another. That said, I’m not advocating anything I tried here, and people should discuss things with their open-minded health professionals before trying anything.

Antifungals and Herbs

Some herbal measures of note were undecanoic acid.  This worked for the breathing but was intolerable to the GI tract. Tudca, and a particular standardized artichoke extract normalized stool color, helped tremendously with breathing, helped with energy but caused tremendously unbearable diarrhea. Turpentine mixed with olive oil taken with meals helped with breathing a little but reduced my energy and worsened diarrhea.

At one point, I took a black-market antifungal after I read how it acted on the cholesterol portion of a fungal infection and didn’t pose a threat to the healthy gut biome (if I had any left.) It helped a lot on the digestion, only as long as I took it. It didn’t help with the breathing but slowed the bowels. My stools were better formed, but for some reason, the last portion of them was still yellow. I took a meningitis dosage of fluconazole for 8 weeks and a few days after stopping it, the digestive symptoms totally returned. I tried another cycle some months later and stopped after a few weeks when it didn’t work anymore.

Probiotics

Mega-dosing probiotics helped a little. There is a site that sells powder with doses of 400 billion (compared to the 1-60 billion in stores). Acidophilus helped the most, but also aggravated the breathing problem severely. Other strains had no negative effect on my breathing. An example of a probiotic that had a semi-stabilizing effect on my digestion would be acidophilus at 1600 billion CFU’s/day. Unfortunately, it became extremely difficult to breathe when taking it. Not sure if it is the d-lactate content or the fact that some strains are histamine producers and others are histamine degraders. An example of a probiotic that didn’t cause breathing difficulty at any dose would be l-Plantarum. The manufacturer who sells these bulk probiotics describes acidophilus as a strain that produces d-lactate, and as I never developed air hunger from, say, a histamine-producing strain like thermophilus (although thermophilus never improved my digestion).  I’m more inclined to think the issue is one of d-lactate and not about histamine. That said, below is an interesting chart from the book “Fix your Gut” by John W. Brisson.

histamine modulators
Histamine modulators and degraders from: Fix Your Gut by John W. Brisson.

Probiotics stopped me from running to the bathroom several times a day, even after discontinuing them, but they weren’t a fix. I don’t take them anymore.

Digestive Enzymes

One of the biggest things to help was the digestive enzymes that I took but it took some trial and error to figure out which ones worked best and at what dose. When I took too much or the wrong ones, it worsened my GI symptoms. I tried a very high-dose amylase pill (4 x 200mg per meal) and then incorporated the full dose of lipase from the same brand. I realized that there was definitely a lack of digestive enzymes, but that I reacted poorly to protease, which is included in most enzyme products. I can’t underemphasize how helpful taking enzymes in high doses without protease has been. I’ve tried to incorporate protease on several occasions. It is available in a 400k potency strength down to around a 50k potency. After reading the success of one reviewer on Amazon, I tried to power through the bad symptoms caused by several high potency proteases, because I believed it would be effective against infection and probably a premier defense against pathogens in the bowels, but it always resulted in diarrhea, lots of slime, and eventually, I would start to see specks of blood.

Strangely, at a lower dose of protease, the outer edge of my thumb and index finger would dry up. It’s a weird reaction considering all kinds of people can take a lot of proteases without any issues. For an extended period of time, I backed down to the one brand that has 50k potency, which I can tolerate somewhat, although it caused a rushed bowel sensation. Ironically, the one I’m happiest with is the strongest one I’ve taken, as it doesn’t seem to cause any of the side effects. The problem with tolerating a protease might be like what the protease-producing fungi were fed to produce protease in response to. I don’t believe trace elements of fungus are causing a problem in widely circulated brands in my case, as I can tolerate fungal lipase and amylase with no problems, but a probiotic protease cultured to digest wheat and milk proteins caused big problems for me. The high potency brand of protease I’m taking is tasteless, reduces bloating, and unlike the other proteases I’ve taken, it helps digestion, particularly with stool formation.

Navigating Nutrient Repletion

I became more interested in thiamine when I took a supplement called N02, which was a bodybuilding supplement consisting of a large dose of arginine that resulted in more vasodilation and more carbohydrates going toward glycogen. It provided a very pronounced benefit for me in terms of muscle-pump/glycogen storage, but the label said: “not for those who are thiamine deficient.” While I wanted to enjoy the benefits of the supplement, or now something I like better such as citrulline peptides or a 20-gram dose of beet powder, it made me unusually sleepier, and it caused extreme dryness on the left side of my neck every time. I wondered if I had this unusual reaction because I was low in thiamine. I now attribute the complications I noticed taking “pump” products to be the result of improved circulation causing an increase of infection into my bloodstream, as the problem is greatly reduced by the high potency protease I’m taking. I had tried thiamine several times, but in pill form at 100mg doses, which may not have been enough. I began looking for a good coenzyme thiamine powder, which I found. At that time, I also found acetyl coenzyme A powder at $2000/kilo -seriously. I bought them both.

I decided to only use coenzymated B vitamins – vitamins that are in their active form used by the enzyme – after reading this study on PubMed: The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function – PubMed (nih.gov)

Vitamin B6 is a water-soluble vitamin that functions as a coenzyme in many reactions involved in amino acid, carbohydrates and lipid metabolism. Since 2014, >50 cases of sensory neuronal pain due to vitamin B6 supplementation were reported. Up to now, the mechanism of this toxicity is enigmatic and the contribution of the various B6 vitamers to this toxicity is largely unknown. In the present study, the neurotoxicity of the different forms of vitamin B6 is tested on SHSY5Y and CaCo-2 cells. Cells were exposed to pyridoxine, pyridoxamine, pyridoxal, pyridoxal-5-phosphate or pyridoxamine-5-phosphate for 24h, after which cell viability was measured using the MTT assay. The expression of Bax and caspase-8 was tested after the 24h exposure. The effect of the vitamers on two pyridoxal-5-phosphate dependent enzymes was also tested. Pyridoxine induced cell death in a concentration-dependent way in SHSY5Y cells. The other vitamers did not affect cell viability. Pyridoxine significantly increased the expression of Bax and caspase-8. Moreover, both pyridoxal-5-phosphate dependent enzymes were inhibited by pyridoxine. In conclusion, the present study indicates that the neuropathy observed after taking a relatively high dose of vitamin B6 supplements is due to pyridoxine. The inactive form pyridoxine competitively inhibits the active pyridoxal-5′-phosphate. Consequently, symptoms of vitamin B6 supplementation are similar to those of vitamin B6 deficiency.

I honestly don’t know if complications with non-coenzymated B6 occur similarly with other non-coenzymated b vitamins. With B1, I know that we do have extracellular coenzymated thiamine circulating in our blood. So-called coenzymated B complex supplements contain an unknown mix of coenzymated B’s with a majority of those same B vitamins in their non-coenzymated forms. Some B vitamins are never, or rarely, sold purely in their coenzymated forms, such as with thiamine and B5. Thiamine pyrophosphate bulk powder is hard to get. When someone writes about how they tried thiamine pyrophosphate and it didn’t help, I’m skeptical because it sells in tiny doses and I imagine people rarely give it a fair shake in large dosing protocols. Nobody sells coenzyme A, not even a brand ironically named “Coenzyme A Technologies” which just sells a precursor pantetheine in a very small amount.

Adding Acetyl-Coenzyme A, Thiamine, and Other B Vitamins

Initially, I worked with acetyl-coenzyme A. I ended up taking an estimated 600mg transdermally several times throughout the day with great success. To do this, I would splash some water on a thin-skinned area such as my shin or forearm and pour the powder onto the wet area before rubbing it in. There is a trick to make sure that there isn’t too much water being used and to also make sure the dose doesn’t splash everywhere. I would follow that with a DMSO cream. For those of you who don’t know, DMSO supposedly drives nutrients through your skin better. There are products that claim 99% absorption when DMSO is added, whereas without it the area would eventually lose the ability to keep absorbing a targeted nutrient after a few days, and it would just evaporate. DMSO smells horrible, so much so that this procedure isn’t possible unless you use the brand that has mixed it with a rose scent, which doesn’t smell bad at all. This basically resolved the exhaustion problem I have, particularly with regards to wakefulness/motivation.

Typically, I wake up more tired than when I went to sleep, but I have to work out at 7 am. I rub this into my skin and within 20 minutes I’m totally awake. It’s not a stimulant feeling, it’s just that suddenly sleep isn’t an option and attempting to sleep becomes annoying. I’ve also benefited from this during what may have been a thiamine paradox reaction, which in my case manifested as extreme tiredness and a definite drop in mood. It has taken 1-2 doses of acetyl coenzyme A about 1 hour apart to climb out of that, which otherwise could have easily lasted 4 hours. I can’t speak as to whether this overcomes normal tiredness, as again I have otherwise abnormally extreme tiredness. Unlike caffeine though, acetyl coenzyme A is a big part of the Krebs cycle, and niacin is too inflammatory for me; even niacinamide causes my nose to get very runny and I just don’t feel like inducing a histamine reaction is a good idea. Acetyl coenzyme A gets around that. Also, I remember a book called the Ultimate Healing Guide by Donald Lepore who was administering 9 grams of B5 a day in some cases, which always made me question how effective calcium pantothenate or pantethine is. That said, I can see why people don’t sell Acetyl coenzyme A. Long story short, it has to be sealed and at the very least refrigerated.

I also began using thiamine pyrophosphate powder. I take this transdermally as well. It has profoundly improved my breathing and given me a lot more oil or moisture to my skin. I’ve noticed sporadic increases in saliva, which I regard as healthy given that I produced a lot when I was a healthy kid. I’ve noticed my workouts have improved as well. I lift weights and my sets are a lot closer together now and I have more of a muscle-pump/glycogen storage during my workout which buffers the unpleasantry of moving all that heavyweight around. I’m taking approximately 600mg 4 times a day following meals and protein shakes. I don’t take it on an empty stomach. I believe a higher dose would further improve saliva production and breathing and I am presently taking it slow getting to that higher dose.

I noticed I don’t have improved breathing if I stop taking the high potency protease and interestingly, my breathing is terrible if I take the protease without the thiamine. I’m speculating that the protease is having a huge antipathogenic effect, which may reduce hydrogen sulfide gas and possibly compromise the thiamine I’m taking. Another possibility I’ve considered is that the protease causes enough of a reduction in the pathogens that the thiamine effects can be observed and are otherwise drowned out by an overwhelming amount of histamine or whatever is causing the breathing shortage. I’ve noticed also that any drowsiness or drops in mood seemingly caused by high doses of thiamine pyrophosphate (perhaps due to improvements in circulation and which an infection is also able to take advantage of) are negated when I take the high potency protease. Thus, I would attribute those symptoms to the infection I likely have.

I’m also taking p5p, which has a kind of nerve stimulation benefit to it for me. I take 20mg sublingually every three hours. At one point early on, I couldn’t tolerate 40mg without feeling like the contents of my bowels were sliding through me (followed by diarrhea), 20 mg wasn’t a problem though. I feel the p5p is synergistic with the acetyl-coenzyme A.

I also take R5P at 50mg 4x a day with meals. Not sure it helps, but I read it helps with the coenzymation of the other B vitamins.

In total, these four B vitamins have reduced my bleeding gums to less than 2-percent of what it was. They have reduced the soreness in the bottoms of my feet, drastically improved my energy and motivation, drastically improved my breathing, and improved my athletic endurance/muscle glycogen. I noticed a pronounced reduction in the frequency of urination, earwax production has increased, particularly in the left ear where it was reduced.

Theories

I have listed some theories below with my own observations notating them. I’d like to hear other  opinions. Disagreements are definitely welcomed.

  • Was my problem a result of too much flora lost from chronic diarrhea, which led to fungal overgrowth, which led to hydrogen sulfide, which then continuously degraded my thiamine?
    • There is a book online Fix Your Gut by an author I felt has some insight that says fungal infections reduce both thiamine and b5. My Spectracell test showed I wasn’t low in anything else but those two nutrients.
  • Was the paradoxical effect from thiamine that resulted in exhaustion and a drop in mood from the improved circulation generated by an increase in nitric oxide or other means? Did this then allow the already-present fungal infection to enter the blood and cause mood problems and exhaustion?
    • I would support this theory by mentioning how taking nitric oxide supplements (i.e., citrulline peptides, beet powder standardized for nitrates) also resulted in this exhaustion as well, where it becomes difficult to keep my eyes straight. I would also support this saying that the high-potency protease I take, which I regard as a strong anti-fungal, negates that complication.
  • Is the acetyl-coenzyme A is only helping because it is circulating pathogens or their chemical excretions from my blood? I’ve been doing it for many months, and it isn’t like I’m needing less of a dose or less frequency, which I would imagine someone would see if they were addressing a deficiency.  I suppose it is possible the extra amount is needed due to possible ongoing fungal problems.
  • Was the lack of enzymes caused by an infection in this case and not by a lack of vagus nerve stimulation? Ultimately, I’d like to be producing my own enzymes and I feel being able to do so gets me closer to the cause of all this. I suspect a fungal infection can somehow offset the necessary stimulation nerves normally receive, and ultimately compromised my pancreas if it wasn’t compromised in other ways by an infection. I don’t have any sharp pains consistent with severe pancreatitis, just a reoccurring dullness in the area. I’ve tried a number of nutrients to increase nerve stimulation with no effect and imagine if there is an issue here with the vagus nerve, it is more directly caused by complications from an infection.

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8 Comments

  1. The origin of your Dysautonomia is nearly exactly like mine…. I had 16 days of that watery yellow diarrhea. Unfortunately I was put on Cipro for that and it really played havoc on my nervous system. Halfway through that, but before the Cipro, the breathing issue started, especially upon standing. I also have constant panic, HUGE stools, dizziness, flushed face while sitting, blood pressure ups and downs, insomnia, lack of sweat and sensitivity to light, sound and smells. I had been told I have CFS and POTS. All of this from what I thought was “food poisoning” which turned out to not be the case.

    After finding Elliot Overton and Dr Lonsdale and Dr Chandler, I began taking thiamine… but I haven’t committed to the MEGAdose until now… I’m one and a half years out, but I’m determined that TTFD is going to help me get my life back. It just makes too much sense for it not to greatly help. I check nearly all the boxes for Beri Beri.

      • About 2 weeks after a disc herniation I developed the unexplained diarrhea… after a week of that everything else just collapsed. I think if the breathlessness were to resolve the rest of my remaining problems would resolve as I would not be in a near constant fight or flight state.

        • I’ve got your email. Is it alright if I keep in touch with that? Ive made alot of progress which i can get into specifically and, given the similarities, I’d want to know about anything you may do in the future that works

  2. I had explosive watery diarrhea 24/7 for 10 yrs. I lost 12 kilos. The only thing i was offered was corticosteriods. I started Thiamine Oct 2019 after having read aboout Dr Marrs and Dr Lonsdale’s work on Thiamine. Finally, after almost 3 years with high amounts of B1, a B-complex, magnesium and potassium, I’m cured. After having read a lot on Hormones Matter, I now realize that my diarrhea was gastrointestinal beriberi.

  3. If these problems started when you were on a vegan diet, you might consider looking at oxalates. Search oxalates on the hormonesmatter.com website. You can find great videos by Sally K Norton on YouTube. I developed diarrhea on a ketogenic diet. The biggest contributer to the diarrhea was boxed spring mix salads. I kept thinking I had food poisoning, but no one else in my family was having the problems I was. I cut out the boxed salad and a few other high oxalate foods and my diarrhea completely resolved. My breathing problems show up as sleep apnea and diaphragm flutters. It feels like my diaphragm has forgotten how to work properly. Thiamine keeps the breathing problems under control. I take B-50 by NOW along with 500 mg Thiamine HCl, 300 mg Benfotiamine and 100 mg of Allithiamine two times per day.

    • I wonder how you were able to go your whole life prior to keto without oxalate problems before suddenly getting there. some people report temporary”Keto Runs” when they start keto for reasons i dont understand why, although I have seen a clinical case of someone who became intolerant of carbs after being on keto long term, which was attributed to an inability, at least temporary, to break down the carbs. I can easily go days without veggies and dont see any correspondence to my health for better or worse with or without them, but i think everyone has a problem with oxalates if they eat enough; dont plants produce them to limit overconsumption?

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