Beriberi is Alive and Well in America

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beriberi thiamine deficiency
Readers of this website must surely be aware that the American medical profession completely resists the possibility of vitamin deficiency as a cause of any disease in America. This is so deeply ingrained that anybody claiming such a diagnosis is considered a fool. This seems to be particularly addressed to the classic vitamin B1 deficiency disease, long known as beriberi. It is unfortunate that we use a Chinese word that, translated to English means: I can’t. I can’t. It is the expression of the profound associated fatigue. There is good reason for denial of its modern existence. It has always been common in countries where rice has been the dietary staple. It existed unrecognized for centuries. In fact, the incredible intricacies of this complex disease took many years to unravel, much of which was performed in China and Japan where there was an obvious interest. It was a series of important historical events that led to its final solution and the history is fascinating. I really think that it is an example of the proverb “those that forget history are condemned to repeat it”. For example, groups of factory workers developed their first symptoms of the disease together after an exposure to sunlight. “Epidemics” of the disease occurred in the summer months. It was only natural that the investigators at that time had concluded that beriberi was an infectious disease. Their search for the responsible micro-organism was a futile endeavor.

The explanation can only be provided from modern knowledge. We now know that ultraviolet light imposes a stress on the human body, requiring mobilization of energy in order to meet it. For example, a car requires more energy to climb a hill. The hill is an analogy for “stress”. The groups of workers described above were in a state of mild deficiency of the vitamin and the stress of the sunlight precipitated full-blown disease, simply because of lack of extra energy required to adapt to the stress. Thus, any form of stress has to be considered in relationship to genetic risk and nutrition if and when the symptoms of beriberi are precipitated.

With this preamble, let me describe some of the clinical experiences that I have been exposed to. First of all, I was lucky enough to be able to think about health and disease in my position in a multi-specialty clinic. I came to the realization that the human body is a wonderful “machine” where the coordination of 70 to 100 trillion live units called cells, depends on chemical energy that has to be transduced to electric energy in order to carry out cellular function. Not only that, I had recognized something that is taken for granted today, that brain cells have an extravagant use of energy. The case that precipitated my lifelong interest in thiamine (vitamin B1) was a six-year-old child who had intermittent brain disease that had confounded all the studies and tests applied in the search for a solution. To put it simply, it was a biochemical approach that showed that he and his brother had a genetically determined condition that, for the most part, allowed them to pursue a relatively normal childhood life. However, each episode of spontaneously resolving brain disease left a little bit more permanent damage. The disease was invariably precipitated by an exposure to a form of stress, represented by a simple viral infection, on one occasion by a mild head injury, and even after an inoculation.

With the help of John Blass M.D. who was working at the National Institutes of Health, we were able to prove that these boys represented the first example of what came to be known as vitamin dependency. In order to prevent brain disease, both of these children required enormous doses of thiamine, but if they were affected by any form of stress such as a viral infection, the daily dose of the vitamin would have to be doubled or tripled in order to prevent a brain disease episode. I came to understand that under these circumstances I was using thiamine as a drug and that it was not a matter of simple vitamin replacement. It was an early example of epigenetics, the relatively new science concerning the way nutrition and lifestyle affect our genes.

You have to understand a very simple idea: thiamine and magnesium are known as “cofactors” to a series of enzymes that represent the machinery of energy production. Both the cofactors are derived from nutrition and have to be bound to their enzymes by a genetically determined mechanism. Not only that: thiamine has to bind to a protein known as a thiamine transporter. The transporter is also genetically determined and conveys thiamine into the cell. All of this takes place in thousands of minute organelles called mitochondria. I refer to these organelles as the “engines” of our cells. That is why glucose can be compared with gasoline in a car engine. Like an excess of gasoline chokes the engine, an excess of glucose chokes mitochondria. Thiamine and magnesium can be compared to a spark plug that ignites the gasoline. Perhaps the reader can begin to understand that this vitamin deficiency disease can literally develop any symptom anywhere in the body according to the distribution of the deficiency and its degree. The brain, heart and nervous system are the most oxygen demanding organs so it is not surprising that they are the first to be involved in thiamine deficiency.

Additional Cases of Thiamine Deficiency

My colleagues knew of my interest and although I was a pediatrician I was asked to comment on the following case. A 67-year-old anesthesiologist at a hospital in Columbus Ohio came down one day with “a heart attack”. He was subjected to catheterization of the heart that was found to be completely normal. Meanwhile, his son was a medical student and having researched his father’s symptoms, he claimed that the disease was beriberi. The patient was referred to Cleveland Clinic and I was asked to comment on the situation. I found that when he went to his garage to drive to the hospital he would be afflicted by a series of dry heaves. This alone would immediately call to question the possibility of thiamine deficiency. He would give the anesthetic for a series of cases, after which he would go to the pediatric ward and cut himself a large piece of chocolate cake. On returning home, he was too tired to eat dinner and would go to bed, only to repeat the performance the next day. He returned to Columbus with the advice that the patient’s son was correct. I never received a follow-up and don’t know how he was treated but I later heard that he had died. I suspect that he was, in fact, given thiamine in too large a dose that overwhelmed his fragile metabolism.

My next experience was with a brilliant pathologist who was well known in the specialty. She told me that she had extreme fatigue. In fact, a few days previously she had been driving to work but felt so ill that she had turned round and gone home. I discovered that she had a chocolate box in every room in the house. As she went around from room to room she would consume one of the chocolates in each box. I advised her to stop doing this and take a supplement of thiamine, whereupon she rapidly recovered. Note that this was purely a hedonistic urge and had nothing to do with her three meals a day routine.

Ondine’s Curse

A mythological character was a water nymph who supposedly lived in a puddle. She fell in love with a mortal who jilted her and she cursed him with the loss of automatic breathing when he was asleep. There is a disease known as “Ondine’Curse” where this form of breathing ceases, usually at night and the patient dies. So one day I was having lunch with one of the Ear Nose Throat surgeons who knew of my interest. He had seen a woman in the intensive care unit who had stopped breathing and he was called to put in a tracheostomy. He suggested that I should view the case. She was under the care of a rheumatologist and she had had a history of periods of unconsciousness as well as joint pain. In using my knowledge of chemistry, I was able to show that she had thiamine deficiency and began treatment with thiamine.

During her clinical recovery she developed a profound anemia which proved to be due to a deficiency of folate. The importance of this is that her brain was affected by thiamine deficiency but when she was treated with the vitamin, her energy dependent metabolism increased. This exposed a previously adequate sufficiency of folate related to her slow metabolism. The increasingly efficient metabolism stimulated by thiamine required more folate to meet the new demand. She was a chronic smoker that had contributed to the metabolic changes in brain function that precipitated a disease that had gone unrecognized for years. I remember visiting the rheumatologist to ask her whether we could conference the patient to expose this information. She obviously thought that it was an absurd idea and refused to consider a meeting of physicians for further discussion. I learned something else from this patient. She was discharged from the hospital taking supplements of thiamine and folate. When she returned for review, the paralysis in her legs was worse and she had developed a rash on her arms that may occur occasionally in association with deficiency of vitamin B12. It has long been known that B12 and/or folate deficiency could individually be responsible for pernicious anemia (PA). However it had also been known that folate supplementation could not be given on its own for folate deficient PA. It had to be given with vitamin B12 and I had forgotten this. I gave her an injection of vitamin B12 and over the next few days she had some fever and muscle pain but the rash disappeared and she felt better.

The Complexity of Treating Vitamin Deficiencies

I provide these details to show that an understanding of vitamin deficiency disease introduces complexities that require study. When she began receiving thiamine and became clinically worse, it would be easy to blame it as a “side effect” that required administration of the vitamin to be stopped. A physician must first of all have enough knowledge to suspect the possibility and then apply the necessary tests. Obviously, if the collective psychology refuses to accept that possibility, the complaints of the patient, together with the clinical observations of the physician, will be treated symptomatically without a full recognition of the underlying cause. My exposure to a case for which I had no medical responsibility provides an example, for I was merely a visitor. I heard from her that she had been diagnosed with heart disease. She went on to say that her heart rate had dropped to 30 beats a minute, an extraordinarily dangerous situation for which she had received the drug atropine. Atropine blocks the nerve mechanism into the heart, thus controlling the danger symptomatically. She had then been given a diuretic drug and she went through an agonizing 24 hours of almost continual urination. It was clear to me that this was a dramatic exposure of thiamine deficiency heart and nerve disease. She had in fact “wet beriberi”. It has been referred to as “wet” because of the profound collection of fluid in the body and that had been treated symptomatically with the diuretic. The point that I am trying to make is that although the patient had been treated successfully with drugs, the underlying cause had not been recognized. These are uncommon cases, but I am claiming that they are the end-point of years of nutritional and medical neglect and yes, medical ignorance.

Because thiamine deficiency has its major effect in the lower part of the brain, the earliest effects are those of a deregulated autonomic nervous system (ANS). The reader will remember that the ANS conducts the traffic of body organs under the command of the brain. It consists of two basic systems, one of which stimulates action and is called sympathetic. The other one stimulates rest and is known as the parasympathetic. An early symptom of thiamine deficiency is an overdrive in the parasympathetic system, whereas at a later stage of the disease there is usually an overdrive of the sympathetic system. Accepting this factor, it can easily be seen that the patient described above, whose heart rate was drastically slowed, had been endangered because one of the nerves to the heart had carried an overdrive of parasympathetic activity. This, accompanied by a huge collection of fluid in the body, was characteristic enough to look further for the ultimate diagnosis.

Common Presentations of Thiamine Deficiency: The Walking Sick

Looking back at the history of finding the solution to this disease, it is known to have a long morbidity and a low mortality but with a long life of chronic illness gradually leading to some form of mental or physical crippling. In the elderly patient it is often attributed solely to aging. In the 1940s an experiment was carried out in a group of human subjects who were provided with a moderately deficient thiamine diet. Their symptoms were characteristic of those that are presently regarded by most physicians today as psychosomatic. They were irritable, quarrelsome and experienced heart palpitations, headaches, loss of appetite, insomnia, diarrhea or constipation, chronic fatigue and/or intolerance to heat and cold. The vast majority of patients that I treated when I was in practice had a polysymptomatic presentation of this nature, many of whom had been doctor shopping without relief. I was dealing with what I call the “walking sick”, a large group of patients that are haunting the offices of physicians throughout America. Sometimes they had been given a named diagnosis but had not benefited from drug treatment.

The behavioral characteristics of children, particularly those with ADD or ADHD, are dietary in origin, often coupled with some form of genetic risk, not the least of which is superior intelligence. They are being treated symptomatically, but I offer the possibility that failing to recognize these symptoms as nutritional in character may be a failure to recognize them as the forerunner of chronic neurological or heart disease. It is a reflection of high calorie food ingestion overwhelming the action of non-caloric nutrients that enable the necessary synthesis of cellular energy for function, particularly in the brain. In our book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition”, we note that our present culture is cursed with a hedonistic ingestion of high calorie malnutrition, responsible for much loss of health. In fact, I have suggested that it is the equivalent of what happened to the ancient Romans whose wine tasted sweet because of lead infiltration from the glaze used in their wine containing jars. They did not know that they were suffering lead poisoning. We don’t seem to grasp the danger of sugar. Each symptom, as it appears, is treated symptomatically with a medication. Rarely is there an interest by the physician concerning diet, particularly the ingestion of empty calories consumed socially. Given the challenge of hedonism, it seems to be part of life joy, particularly in the elderly, to indulge in all the dietary aspects of sweet, sweeter and sweetest. However, it is inappropriate to fail in recognizing the symptoms that might or might not develop as a result. If one or more of the many symptoms is recognized and the patient informed, it is then his/her choice to make the necessary changes.

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35 Comments

  1. Thank you for reply! I´ll increase the dose! I am 30 years old and as I wrote, sick since childhood….so I understand I have to be patient. I am 5´2 and we are short in my family, but I have never been able to put on muscles and I think it´s related to mitochondria. I tried to increase the dose after a month, but I became very much worse and was probably still in the middle of the paradox reaction, so I´ll try again now.

    I run out of allithiamine last week and started to take lipothiamine instead (because allithiamine was out of stock when I ordered)…and I started to get all my symptoms back, (neurological, complete loss of appetite, weakness, anxiety and a lot of ileus because of paralyzed gut), that had started to improve from allithiamine. Seems like I don´t absorb lipothiamine tablets…I get very irritated in the gut and a lot of garlic smell in stool…so I don´t think I digest the tablets very well. But hopefully I`ll receive allithiamine this week and get back on track (and I´ll make sure to never be without them again, after learning that lipothiamine is not for me!) Thanks for your help!

  2. Hey Derrick, it seems there’s a huge trend going around with the carnivore diet. It seems to be curing these incurable psychological and physical diseases. I think this resonates with your principals dramatically. I think you should chat or get someone you know who is knowledgeable like you to communicate with influencers. (Primal edge health, Bart Kay are good ones, very open minded.) I think you could Positively influence thousands.

    1. Thank you. The carnivore diet is really a return to “Hunting and Gathering”. Our ancestors were indeed meat eaters but they also gathered nuts and seeds and probably experimented with berries, finding some to be nutritious and some to be lethal. Fruit and vegetables supply the carbohydrate. Meat supplies protein and fat. Meat and whole grains supply B complex Therefore, the carnivore diet is incomplete. I have e mailed Bart Kay so thank you for that.

      1. Dr. Lonsdale,

        I have POTS, extreme dizziness and weakness, and other symptoms that are partially from hormone withdrawal (I cannot find any real hormones from any pharmacy in St. Louis, MO, nor any pharmacy that sends me anything out of state. In any event, I have all the thiamine deficiency symptoms practically and have tried all of the thiamines. basic b1 mononitrate appears to make me worse with 10mg biotin. I take 10mg biotin with everything just in case I carry that mutation. Do you have a list of mutations so I know what letter double recessive allele has to be inherited to have any of these thiamine mutations? Also, is there any difference between allithiamine pills from ecological formulas and lipothiamin? I see lipo looks enteric coated which should be nice. I wondered if benfothiamine would help as it doesn’t wreak of sulfur like my allithiamine. I’m wondering if there are any other vitamin deficiencies are exotic vitamin forms you can recommend like pyradoxamine or something for extreme dizziness and weakness symptoms in a 29 year old man. Thanks, Clayton

        1. My answer to both comments. In my experience Lipothiamine is unequivocally the best synthetic thiamin supplement. The enteric coating gets it through stomach acid. It also gets into brain while benfotiamine does not cross the blood brain barrier. You will not get full benefit without a supplement of magnesium. Lipothiamine is non toxic so the dose should be increased slowly and with patience. Depending on the underlying cause it can take several months of continuous ingestion assuming that you have protracted deficiency or a genetic cause.

          1. Dr. Lonsdale,

            Do you think high dose regular thiamin..like 3 grams a day will get it into the brain? Is there a mutation that prevents that despite high enough levels of regular thiamin for passive diffusion? How much allithiamin ideally should I ideally eventually be taking? I notice almost a worsening of symptoms with high dose regular thiamin (3g). It’s good to know this may take a couple months to fix. Low dose regular thiamin also makes me worse as high dose does too. I guess the regular thiamin at any dose just isn’t making it into the brain/nervous system. You mentioned folate was needed in one article possibly and I was wondering if regular folic acid was okay. I see my 23andme raw data but very few sources show which recessive gene letter double copy leads to disease. I also take 10mg biotin per day to try and increase thiamine transporter capacity. Thanks for your time.

            Thanks,
            Clayton

            1. The best you can do for yourself is to take Lipothiamine or Allithiamine in 50-100 mg doses plus magnesium and sit out the paradoxical worsening. These derivatives do not require transporters to get thiamine into cells. It is unfortunate that you cannot operate under the care of a physician. Try e mailing the International College of Integrative Medicine (ICIM) for a referral.

              1. Would taking 3g of regular thiamin in addition to the allithiamin 100mg twice a day be worth anything more or maybe adding biotin to it? Thanks for your replies.

              2. Dr. Lonsdale,

                Which form is the best form of b12 to take? Is the allithiamin basically reactivating nerves in my brain?

      2. Dr. Lonsdale,

        Also I have sublingual thiamine pyrophosphate which seems to help most.
        I was curious if this was more lipophilic than Benfotiamine or if taking Benfotiamine would block taking pyrophosphate if I took them both or if swallowing the sublingual pyrophosphate would cause the phosphate group to fall off prematurely.Thanks, Clayton

        1. I also want to say that I have bad reactions to niacinamide, but not niacin. Lots of anxiety. Could this be related to my b1 problem?

  3. ? Hello! I am low in B1, B2 and A lipoic acid on my blood word. My only symptom is a buzzing feeling in my body. I’m winding what is a good dose to start on and what kind of thiamine should I take? Thanks!!

  4. Opportunism means that the microorganism is able to take advantage of weakened bodily defense mechanisms in the host.

  5. I agree, in that low dose thiamin supports cancer while high dose suppresses, thiamine strengthens, and also since you are the authority with far more knowledge on this than me. I just didn’t agree with thiamine deficiency as the body using it as a protective mechanism against candida.

    In fact probably goes the other way candida produces acetaldehydes lowering b vitamins thus another way a high sugar diet contributes to thiamine deficiency.

  6. Whilst reading this article, it struck me Dr. Lonsdale, that many people now in our Western society struggle with Candida/yeast issues. It is believed that sugar feeds Candida, and it is true that yeast ferments sugar, however, it made me wonder whether yeast proliferates in a high sugar environment to actually try to generate lacking B vitamins. Fermentation is known to generate B vitamins so I can’t help wondering whether the Candida proliferation is not somehow a somewhat clunky way of the body trying to protect itself…..

    1. The body is never “clunky”. Yeast is an “opportunist” organism that takes advantage of debilitated biochemistry— and yes: it all begins with sugar

      1. Dr. Lonsdale,

        At 1,000 mg of lipothiamine I’ve been able to stave off POTS, excruciating leg cramps, TMJ and other oral problems permanently since 2017. My symptoms come back in a few days if I miss dosing for a few days.

        My Hashimotos symptoms haven’t abated and with almost no to low lactobacillus and bfido species, I’m always fighting bacteria overgrowths.

        I’m on a gut healing protocol and restrictive diet. I take large doses of phosphorylated b vitamins, a Meyers cocktail once a week for over a year, yet my B’s still measure on low on labs. Sometimes I take a high dose 1,000 mg NAD IV, which helps with IBS but the relief is not more than a day.

        Would taking Thiamine HCL in powder in an enema help? Can 1,500 to 2,000 mg of TTFD be safe on a regular basis? I’m 54. I’ve tried large doses and it seems to be okay no side effects, but no increase in energy.

        1. Very interesting! There is an obviously severe genetic background. That is the highest dose of Lipothiamine that I have heard of. It does support my contention that it does not have toxicity. I don’t think ThCL would help. It might be a good idea to get your genome.

      2. I’m not so sure that any ‘pathogen’ is actually ‘opportunistic’ in that it is deliberately malevolent, however I do believe they are dictated by the environment they find themselves in.

        In nature, the microbes found in a stagnant pool are not found in a fast-flowing river. The stagnancy has to come first. They do not cause it, but are ‘created’ within it.

        Flour & water creates sourdough. For as long as the sourdough is fed & maintained it will thrive. But within hours of neglect, other microbes will form to break down the decaying substance into its base elements.

        All decay is either broken down or rendered inert by microbes or worms. Are worms opportunistic? Earthworms have a job to do. They process soil. Are helminths effectively attempting a similar job in the body? Are they opportunistic, or simply embedding themselves in a body that is decaying internally due to nutritional deficiency whether dietary or due to gut damage & resulting malabsorption?

        I have systemic worms. I feel them around my body, but interestingly one place they have been active is around my left eye. Now, I have retinopathy – macular oedema. It is far worse in my right eye which has not had the worm activity, than in the left, which has. My health has not been great for years – lost my energy (Mitochondria) around age 14, was a plump teenager & have always been a fat adult, developed diabetes aged 40 after years of hypoglycaemia.

        The worms became apparent 11 years ago (although they probably had been present a lot longer). As annoying as they are,I can’t help wondering whether I might actually have been worse off without them……

    2. Most likely not – thiamine deficiency is actually proposed to defeat candida/fungus infection –

      “As thiamine is needed for the growth of certain microorganisms, the inducement of thiamine deficiency may be a viable supportive treatment for opportunistic fungal infections.12 Yeasts such as Candida albicans and Malassezia pachydermatis are part of the normal microflora in the clinical and veterinary realm, but their overgrowth can cause a variety of health concerns. A recent study investigated whether treatment with thiamine analogues such as oxythiamine (Figure 8) could decrease growth of these microorganisms as a possible supportive treatment for more toxic anti-fungal therapies.”

      From Cornell university – reference here –

      http://thiamine.dnr.cornell.edu/Thiamine_causes.html

      1. That’s a misapplication of the chemistry. All microrganisms need thiamine to survive, both the so called ‘good’ ones and the ‘bad’ ones. When they don’t have thiamine they adopt survival strategies to survive, those that do so most successfully become more virulent and resistant to any sort of treatment. By blocking thiamine, we block it across all species, allowing the more virulent to survive and killing off their natural competitors. C-diff is a good example of this. I have an article on it. Glabrata is another example. You have to flip the framework from starve and kill off as a matter of treatment to feed (nutrients, not sugars) and rebalance the ecosystem.

  7. I was diagnosed with “Neuropathy from unknown causes” back in 2002. It started in my feet (coldness, loss of feeling, cramps, stiffness) then over the years worked up to my calves, with severe cramps, then thighs and even my biceps got involved (squeeze the bicep, get a cramp). I started having a gait issue occasionally with a foot drop. Overall my legs got extremely stiff. Muscles felt like piano wires and no amount of stretching helped. I also had acid reflux issues on and off and a pain the low left abdomen which often expressed out the back as lower left hip. I used to love lifting weights but stopped as instead of soreness then recovery with more strength, lifting seem to cause soreness that just increased no matter how long I spaced out between sessions. Drs. said they eliminated serious possibilities and whatever it was wouldn’t kill me. They noticed some brain lesions, but joked – well who doesn’t have those :-). Still around 17 years later so they were right.

    In the last couple of years I started to have frequent stumbles which progressed to several serious falls last year. Luckily I avoided serious injury. My diagnosis hasn’t been changed nor looked at since 2002, but to be fair, when rushing through the last appointment with my Dr. I forget to mention the stumbling and falling as a new symptom. There seems to be a genetic factor at play as my father suffered from stiff legs and walking issue and neuropathy and both brothers are having similar issues as well and an Aunt had PD.

    I ran across your work with thiamine and have started high dose of the TTFD form of thiamine (allithiamine and lipothiamine) about 100mg 3x a day. I saw a quick resolution of the stumbling and falling issue, my balance has been fantastic, a reduction in muscle pain throughout my body, acid reflux vanished, and a big improvement in cramping in thighs and calves. I also have tinnitus and haven’t seem much change there, it comes and goes.

    My brother has also started. He had water on the heart after having chemotherapy, low energy, constant diarrhea, bloating, weight gain, and the neuropathy in the legs. He is doing very well with only 50 mg a day.

    We both noticed after 3-4 days a relaxation of chronic muscle spasms and increased flexibility, especially in the shoulders. My brother says he could raise either arm and touch the middle of his back for the first time in over 40 years. My brother is also losing body fat around the belly quickly, he is overweight, while my weight has been steady instead of the usual battle to stop gaining weight. I also feel far stronger.

    Recently I got busy and missed some doses and the muscle cramping returned quickly and getting back to 100 mg 3X a day (along with a B-complex) cleared things up quickly. I felt things were still very good but not quite as effective so I recently up’ed to 100 mg, 100 mg, 150 mg, 150 mg, for a total of 500 as I also wanted to see if I could tackle the tinnitus. In the mornings I was waking up with my feet feeling a bit tight and after taking my morning dose I could quickly feel the feet unwinding. I noticed that the higher dose just before bedtime seemed more effective, and waking without the tight feeling in the feet. I’m speculating that with the parasympathetic system being more active at night that it might be better to ensure the higher dose then so I’m thinking of going back to 300 but using 150 mornings and 150 before bed.

    I want to say “Thank You!” I feel healthier than I have in years!. You have helped a lot of people, many that have just heard of this word of mouth.

    As for questions – I am 6’4″, 240 lbs, and 64 years old. My dosage is 2.8 mg/kg. My remaining issues are tinnitus and some eye issues (vitreous detachment, lots of floaters and flashes in both eyes). Would higher doses be ok to try? The only things I might attribute as side effects – I get hungry after my morning dose – as if I’m experiencing low blood sugar but not the other doses, I’m sometimes twitchy in the mornings (maybe a case for that higher dose before bedtime), I sometimes feel a bit spacey/hard to focus shortly after a dose which passes, and these occasional stabbing/shooting pains sometimes in nerves that haven’t bothered me before – I think this more to do with the relaxing muscles and nerves getting pinched due to my new freedom of movement and adjusting to that. That seems to only happen from sitting around and hold a posture too long then moving not when I am working on projects.

    Thanks again Dr. Lonsdale!

    1. What an interesting post!!! Beriberi begins with sensory neuropathy in legs, gradually ascending. Motor neuropathy follows the same path later. Severe cramps strongly suggests magnesium deficiency as well as thiamin. Stiff legs suggests the “Stiff man syndrome”, a brain defect Acid reflux,abdominal pain and hip all can occur with thiamin deficiency. In spite of “brain lesions”, doctors said that ” whatever it is won’t kill you”. Beriberi has a long morbidity and a low mortality rate, so I agree. Notice improvement in falling, balance, muscle pain, acid reflux, flexibility and weight gain, all symptoms of energy deficiency. Your brother had “water on the heart”,energy deficiency and neuropathy, absolutely typical of beriberi. Notice the obvious genetics. I would be willing to bet that this is a genetically determined defect in one or more thiamine transporters. I presume that MRI studies revealed the brain lesions and this suggests a manifestation of thiamin/biotin basal ganglion disease. For this reason, add a suplement of biotin as well as magnesium. Your weight of 240 # is a major clue. All affected relatives should regard sugar in any form as virtually a poison. It is widely responsible for a huge amount of disease. I recommend my book ” A Nutritional Approach to a Revised Model for Disease” available from Amazon books.

      1. Thanks Dr. Lonsdale!

        I got the biotin and it had immediate effects. The Thiamin took 3-4 days before I felt it engage but the biotin happened almost immediately with more systemic effects overnight. Due to distraction and a careless math error I started with 50 mg instead of 5 but no issues. For now I plan to use 20:1 thiamin:biotin (basing my wild guess on the rda/AI ratio of thiamin/biotin) to see how that goes. The biotin cleared swelling in my feet and calves, my eyes and eyesight had immediate relief, and I felt a strong but pleasant blood pulsation right after taking it in the base of my skull – so I looked up basal ganglia – sure enough that’s the location. Today I noticed much less tenderness in the muscles and much more sensation throughout the body, like a layer of onion had peeled off, subtle but wonderful. A constant nagging crick at the top left base of the skull has nearly vanished. I forgot to mention I’ve also had tmj off and on successfully treated by Dentists but showing signs of returning – thiamin took care of that as well.

        I bought your book and Dr. Mars book – Thiamin Deficiency and plan to study. As for genetics I didn’t mention a 2nd brother who has heart issues, neuropathy, diabetes, and weight issues as well. And an Aunt with Parkinsons. I have quite a few mutations on SLC193A, TKT, and TRPV3.

        I noticed a couple of people had posted some SNP’s here so I did a quick crosscheck – the most interesting was that all three of us have TRPV3 rs539537 +/+ i.e. homogenous.

        We also share: SLC193A rs10933203 +/-, +/+, +/+, TKT rs12493802 +/-, +/+, +/+, TKT rs4687717 +/+, +/-, +/+,

        The only one found info on was the TRPV3 rs539537 which in a Korean study was associated with fatigue in fibromyalgia patients.

        I think an interesting idea would be to have people pool dna (anonymously) and tag symptoms or also self identify as to how thiamin/biotin helped them and then cross check the dna for research targets. Thee was really no info I could find on my SNP’s other than that 1. https://www.opensnp.org/ looks to be just that but the DNA sharing is very open. https://dna.land/ is another possibly but the open research access and phenotyping lsn’t available.

        Finally, you are mostly likely aware of Dr Costantini’s work in Italy with high dose thiamin hcl and Parkinson’s and Fibromyalgia. Just more confirmation of how common thiamin deficiencies are and how many ways it can come about.

          1. When a thiamine transporter is affected genetically, Lipothiamine becomes a necessity because it does not need the transporters.

  8. Hi! What dose is needed with allithiamine/lipothiamine? I started allithiamine (+bcomplex etc, already take magnesium, minerals etc) 2 months ago and had extreme paradox reaction first (could not be upright, woke up in the middle the night and could not breath, more gastroparesis etc…all symptoms were much worse), it started to get better after a month but I am not sure if I am completely out of it.

    But I started to see some improvement in my symptoms (dysautonomia, gut motility problems with ileus every day, appetite loss, numbness, neuropathy, coghweel rigidity, tremor, extreme muscle tightness in combination with joint hypermobility, muscle loss and weakness, breathing problems, edema etc. I have a lot of mitochondrial damage)…

    But now it seems like it has stopped getting better. Do you think I should just wait and let it take time (I am 30 and have been sick since childhood, so I am aware of that it may take a long time to heal the symptoms that are related to thiamine and it´s not all of my illness) or do I need to increase the dose to continue the improvement? I take 50 mg allithiamine (I am not a very big person, 105 lbs)?

    1. I must emphasize that this is not simple vitamin replacement. To treat mitochondrial disease, vitamins are being used as drugs. Therefore the dose is dependent on results. Since thiamin at even megadoses is non toxic, you can push the dose and evaluate from results. Readers of this reply to Martina should note well the severity of the paradoxical worsening of symptoms and how long they lasted. This paradox appears in the medical literature as “refeeding syndrome” because the treatment is taking the patient from a catabolic to a new anabolic state. Not seeing Martina, I don’t know how she looks but I strongly suspect that the dysautonomia is a reflection of inadequate growth. Neither has her age been revealed. If there is still growth capacity, by increasing the allithiamine she will increase both stature and body weight. Dysautonomia is a clinical expression of cellular energy deficiency.

  9. Absolutely! Thiamine deficiency in breast milk has been published as being associated with Sudden Infant Death and Autism

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