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Thiamine and the Energy To Heal

Published on April 6, 2023

8679 views

Over the last 8 years or so and since the publication of our book: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition, I have written dozens of articles and given countless interviews and talks on the importance of thiamine. Just last month, I was privileged to give a talk on thiamine at The Forum for Integrative Medicine. While the talk was recorded, it was available only to conference attendees, physicians, and other practitioners. So that others may have this information, I am including the PowerPoint below.

The talk was entitled: Thiamine and the energy to heal. In it, I outline why we ought to be looking at thiamine, why we are not, and why so many people are walking around with insufficient thiamine relative to the demands not only of modern living, but also, for their own genetic predisposition and unique constellation of environmental exposures. All of the benefits of modernity that we enjoy so readily, the fast and convenient foods with chemical preservatives that extend shelf life, the agricultural chemicals that promise to maximize production, the industrial chemicals that make transportation, heating and cooling, computer and cell phone technologies possible, and modern medications that override natural systems, all deplete thiamine and other nutrients. In other words, modern living demands more nutrition that we provide and that, I believe, is the root of all illness.

Sadly, conventional wisdom disagrees. We are taught that food availability, no matter its composition, equates with nutrient sufficiency. With a good portion of the population overweight or obese, the idea that we may be fundamentally malnourished seems comical. When speaking of nutrition, even prominent researchers and physicians use the term ‘over-nutrition’ to describe the health risks associated with being over-weight. Read just about any article on obesity and the term will likely be used. I won’t belabor the point, but I have to note, that how we define nutrient sufficiency determines whether or not we understand deficiency.

The title of the talk – thiamine and the energy to heal – points directly to the key concepts both Dr. Lonsdale and I have been pushing for years: that healing takes energy and energy takes thiamine. We know this intuitively. What do we do when ill? We rest to conserve energy. Over the last several decades, however, we have forgotten that in order to conserve energy, we have to be able to make energy. No amount of energy conservation will help if one cannot make energy efficiently in the first place.

So how do we make energy? Biological energy or ATP is synthesized by deriving from the foods we eat essential macro (amino acids from protein, fatty acid from fats, and glucose from carbohydrates) and micro nutrients (vitamins, minerals, and metals) and funneling those substrates through a series reactions to make ATP. Those reactions take place in the cell, but mostly in the mitochondria, and all of them require ample nutrients to run. The manufactured ATP then drives everything else. It gives us the energy to live, to breathe, for the muscles to contract, the brain to function, the heart to beat, the immune system to fight illness, even the ability to die a peaceful death requires sufficient ATP. When we cannot make sufficient ATP to fuel the basic functions of living, to put it bluntly, sh%t goes wrong, and it goes wrong in some wildly bizarre and unique ways. Importantly, when we cannot make adequate ATP, no amount of rest will help. Indeed, some research suggests, extended periods of immobility may even degrade ATP synthesis. See here, here.

Why Thiamine?

Thiamine is key to making ATP. It serves as a rate-limiting nutrient to the entire process. If there is not enough thiamine relative to demand, ATP production suffers. Thiamine is the gatekeeper to mitochondrial production of ATP. It quite literally determines whether substrates of glucose can enter the mitochondria and produce up to 30 units of ATP per glucose molecule or if glucose has to be metabolized in the cell where we get only about 2 units of ATP per molecule. Thirty versus two is a huge difference in energy production. Imagine trying to function on such diminished energetic capacity. It just does not work.

That’s not all – thiamine is involved in fatty metabolism and fats can provide up to 100 units of ATP per molecule and it is involved in protein/amino acid metabolism where it determines the pattern of amino acids available for DNA/RNA and other functions. So thiamine is absolutely critical to health and we simply do not get enough from the modern diet both directly and relative to demand. Remember, modern living demands more thiamine than modern diets provide.

Returning back to having the energy to heal, if thiamine is instrumental in making energy, thiamine then is instrumental to healing. To the extent one is unable to heal or suffers with a chronic illness that will not resolve, it is very likely that thiamine intake is insufficient to the demands of the illness. Sure, there are other nutrients that are absolutely critical for health and healing and may also be deficient, but they are downstream of thiamine and require ATP to be managed effectively. That means when thiamine low, we are unable to utilize a whole bunch of other nutrients. It also means that many nutrient deficiencies may be relative to reduced ATP production from inadequate thiamine and not a reduction of the nutrient itself.

The bottom line is that thiamine is critical for health and healing and we ignore it at our own peril.

Thiamine and the energy to heal.

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Understanding Mitochondrial Energy, Health and Nutrition

by Derrick Lonsdale MD, FACN, CNS

Published on March 2, 2023

13655 views

I live in a retirement community. In my everyday discussions with fellow residents, I find that the idea of energy metabolism as the “bottom line” of health is almost completely incomprehensible. Since my friends are all well-educated professional people, I came to the conclusion that few people really have an idea about energy. For example, we talk about people who indulge in physical sports being energetic, while people sitting behind a desk are classed as sedentary. What we fail to realize is that mental processes require even more energy than physical processes. Both physically and mentally active people consume energy, so it is obvious that some kind of attempt must be made to talk about energy as it applies to the human body.

Hans Selye and the Stress Response

I will begin by giving an outline of the work that was performed many years ago by a Canadian scientist by the name of Hans Selye. Originally he was a Hungarian medical student. Some of the teaching was done by presenting individual patients to the class of students. The professor would describe the details of the disease for each person. What interested Selye was that the facial expression of each patient appeared to him to be identical. He came to the conclusion that this was the facial expression of suffering, irrespective of the nature of the disease. He referred to this as the patient’s response to what he called “stress”. He decided to study the whole concept of stress. He immigrated to Canada and in Montréal he set up a research unit that came to be called “The Research Institute of Stress”.

Of course, Selye could not study human beings and his experiments were performed on literally thousands of rats. He subjected them to many forms of physical stress and detailed the laboratory and histological results. He found that each animal would begin by mustering the well-researched fight-or-flight reflex. If the stress was continued indefinitely, the metabolic resistance of the animal gradually decayed. He called this ability of the animal to resist stress the “General Adaptation Syndrome” and came to the conclusion that it was driven by some form of energy. If and when the supply of energy was exhausted, he found laboratory changes in blood and tissues that were listed carefully. Although extrapolating this information from animal studies, he ended up by saying that humans were suffering from “diseases of adaptation” and that they were the result of a failure to adapt to the effects of life stresses.

My addition to this is that it would have been better to describe them as “the diseases of maladaptation”, meaning that humans have to have some form of energy to meet life. If there is energy failure, disease will follow. The remarkable thing is that energy production in the human body was virtually unknown in Selye’s time, so his conclusion was a touch of genius. The mechanism by which energy is produced in the cells of the body is now well-known. We know that energy consumption is greatest in the lower part of the brain and the heart, organs that work 24 hours a day throughout life. The lower part of the brain that organizes and controls our adaptive capabilities is particularly energy consuming. So before we begin to think about energy as a driving force, let us consider what we mean by stress and how we adapt to it.

Human Stress: Surviving a Hostile Environment

We all live in an environment that is essentially hostile. We have to adapt to natural changes such as cold, hot, wet and dry. We are surrounded by enemies in the form of microorganisms and when they attack us, we have to set up a complex mechanism of defense. Add to this the possibility of trauma and the complexity of modern civilization, involving business and life decisions. We possess the machinery that enables us to meet these individual stresses, meaning that we are adapting. Health means that we adapt successfully and that is why “diseases of maladaptation” makes a lot of sense. Obviously, the key is that the machinery requires energy.

Energy Metabolism, Physics, and Chemistry

First of all, let us begin by trying to define energy. The dictionary describes it as “a force” and the only way in which we can appreciate its nature is by its effects. It is not a substance that we can see but the effects of light energy enable us to have vision. The old riddle might be mentioned; “Is there a sound in the forest when a tree falls?” The answer is of course that the only way that the resultant energy can be perceived is when it is felt by the human ear. Even that is not the end of the story, because the ear mechanism has to send a message to the brain where the sound is perceived. Thus, there is no sound in the forest when a tree falls. It is the perception of a form of energy, a force that impacts on the ear of any animal endowed with the ability to hear. Energy can be stored electrically in a battery or as heat energy in a hot water bottle, but the inevitable process is that the energy drains away. A hot cup of coffee cools. A battery gives up its stored energy and becomes just “another lump of matter”.

For example, if a stone is rolled up a hill, its natural tendency would be to roll down the hill again. Whatever force is being used to roll the stone up the hill is known as “potential energy”. In other words, there has to be a constant supply of energy as long as the stone is moving up a gradient against gravity. When it reaches the top, we say that the potential energy is being stored in the stone. It is the equivalent of electricity being stored in a battery. The “potential energy”, however, requires an electrical force to “electrify” the battery. The potential energy in the stone can be released by allowing it to roll down the hill and Newton called this kind of energy “kinetic” (the use of a force to produce movement). The force that is being used is of course the effect of gravity and the stone becomes stationary when it gets to the bottom of the hill. The use of gravity as the source of energy is simply wasted, but note that gravity has not changed. It is still available for use. Let us take a simple example of this energy being used for a purpose. Suppose that there is a wall at the bottom of the hill and a farmer wishes to create a gate. In a fanciful way he could use the stone to create a gap in the wall. The gap in the wall is the observable mark of the effect produced by consumption of kinetic energy.

The body consists of between 70 and 100 trillion cells, each of which has a special function. Each is a one-celled organism in its own right and in order to perform their function they need a constant supply of energy. This is developed by complex body chemistry. The “engines” in each cell are called mitochondria and one of their many different functions is to synthesize energy. The energy that is developed is stored in a chemical substance known as adenosine triphosphate (ATP) and in order to understand this a little more, perhaps we should think of the Newtonian analogy for comparison. The Newtonian hill is replaced by an electronic gradient and the stone by the chemical ATP

Of Mitochondria and ATP

Cellular energy is produced in the mitochondria by oxidative metabolism. This simply means that a fuel (glucose) combines with oxygen but, like any fuel, it has to be ignited. The best way to analogize that is to say that thiamine can be compared with a spark plug that ignites gasoline in a car. It “ignites” glucose. The resultant energy is used to add a phosphate molecule to adenosine three times to make ATP (the electronic gradient). We have “rolled an electronic stone up an electronic hill”. As the adenosine donates phosphate molecules, it becomes adenosine monophosphate (AMP) that must be “rolled uphill again”. As it is “rolling down the electronic hill”, it is transferring energy. Therefore, ATP can be thought of as an energy currency. Note that there must be a continuous supply of fuel (food) that must contain the equivalent of a spark plug (thiamine) in order to maintain an energy supply with maximum efficiency.

The loss of any one of a huge number of components in food that work in a team relationship with thiamine, lowers the energy maximum. That is why thiamine deficiency has been earmarked as the major cause of a disease called beriberi that has haunted mankind for thousands of years. Its deficiency particularly affects the lower part of the brain and the heart because of their huge energy demand. Since the lower brain contains the control mechanisms that enable us to adapt to the environment, as depicted above, it is easy to see that we would be maladapted if there is energy deficiency, just as Selye predicted. In fact, one of his students was able to produce a failure of the General Adaptation Syndrome by making his experimental animals thiamine deficient. It also suggests that a lot of heart and brain disease is really nothing more than energy deficiency that could be easily treated in its early stages. If the energy deficiency is allowed to continue indefinitely because of our failure to recognize the implications, it would not be surprising that changes in structure would develop and produce organic disease.

Health and Disease in the Context of Energy

With this concept in view, the present disease model looks antiquated. There are only three factors to be considered. The first one is obviously our genetic inheritance. If it is perfect, all it requires is energy to drive it. However, DNA is probably never perfect in its formation. It may not be imperfect enough to cause disease in its own right, but a slight imperfection would constitute what I call “genetic risk”, causing disease in association with a stressor such as an otherwise mild infection or trauma.

Suppose that a given patient died from an infection (think of the 2018 flu).The present medical model would place the blame on the pathogenic virulence of the virus without considering whether malnutrition played a part by failing to produce sufficient energy for the complex immune response. Therefore, the second factor to be considered is the perfection of the fuel supply and that obviously comes from the quality of nutrition. Stress (the viral attack or non-lethal trauma) becomes the third consideration, since we have shown that an adequate energy supply is required for adapting on a day-to-day basis. There is even a new science called epigenetics in which it has been shown that nutrient components can be used to upgrade genetic mistakes in DNA. A fanciful interpretation of these three factors, genetics, nutrition and stress can be portrayed by the use of Boolean algebra. This is a mathematical representation as interlocking circles. The area of each circle can be easily assessed, marking their relative importance. The interlocking area between any two of the three circles and that of the three circles together completes the picture. It becomes easy to perceive how a prolonged period of stress can impact health. The present flu epidemic may be an example of the Three Circles of Health in operation, explaining why some people have only a mild illness while others die. Could the appalling nutrition in America play a part?

Why Thiamine

The pain produced by a heart attack has always been a mystery in explaining why and how it occurs. The answer of course is that pain is always felt by sensory apparatus in the brain. The brain is able to identify the source of the signal as coming from the heart but cannot interpret the reason. I am suggesting that in some cases, the heart is having difficulties from energy deficiency and notifying the brain. A coronary thrombosis would introduce local energy deficiency, but other methods of producing energy deficiency would apply. It is logical to assume also that brain disease is a manifestation of cellular energy deficiency. That is why I had found that so many children referred to me for various mental conditions responded to megadoses of thiamine. It is also why I had found that so much emotional disease was related to diet and not to poor parenthood.

I recently came across a patient that I had seen many years ago when he was a child. He had a diagnosis of Tourette’s syndrome, made elsewhere. I treated him with megadoses of thiamine and his symptoms resolved completely. Medical skepticism would answer this by calling it a placebo effect, but since this effect is well-known, it must have a mechanism. For many years I have believed that therapeutic nutrition “turns on” this effect by enhancing cellular energy. A small group of physicians known as “Alternative Medicine Practitioners” use water-soluble vitamins, given intravenously, irrespective of the acceptable clinical diagnosis. For example, I remember a young woman who came to see me with a diagnosis of “Thrombocytopenic Purpura”. This disease is a loss of cellular elements known as platelets and it had resisted orthodox treatment for years. I gave her a series of intravenous injections of water soluble vitamins with complete resolution of the problem. I must end by stating that healing is a function of the body. The only way that a healer can be justifiably recognized is by supplying the body with the ingredients that it requires to carry out the healing process. Perhaps spontaneous healing, as for example initiated by religious belief, is an ability to muster those ingredients that are present, but hitherto unused.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on February 14, 2018.

Healing From Lupron and Endometriosis With Thiamine

by Kristy Townsend

Published on February 28, 2023

8603 views

I was diagnosed with stage 4 endometriosis in 1996. In 2017, I was ready for a hysterectomy. I had two children and was finished with childbirth. I was having a lot of pain on my left side where my ovary was located. My Veterans Administration GYN refused to do a hysterectomy without first giving me Lupron shots assuming that my pain was due to the endometriosis. I was trying to hold down a very demanding government job and missing a lot of work from the pain. I had two laparoscopic surgeries in 1996 and 2001, respectively. Both were to excise the endometriosis. At the time, I was required to take Lupron in order to have a hysterectomy, I was 46 years old. I was denied a hysterectomy after my son was born in 2000 because I was considered too young at 30 years old to have a hysterectomy.

Endometriosis in the Colon and Lupron

After the injections of Lupron, a colonoscopy confirmed a diverticula pocket in that spot that was painful and others on my large intestine. The laparoscopy and excision in 1996 confirmed that my endometriosis extended to my large intestine. The colonoscopy found that I have so many pockets of diverticulosis, a resection surgery was not possible. Basically, if I were to become septic due to an endometriosis/diverticulosis flare, they would need to remove all of my large intestine. My options were very limited. My GYN wouldn’t perform a hysterectomy and laparoscopy under the assumption that the pain I was having was due to endometriosis. He convinced me to start the shots to see if they would help the pain because he assumed the pain was due to endo. I didn’t research the Lupron injections much prior to receiving them. I fully trusted my GYN. He mentioned hot flashes and suppression of symptoms with estradiol.

Immediately I noticed a difference. I don’t take prescription drugs of any kind unless I am really sick. I had nothing for any preexisting conditions. I could not tolerate the injections and function at work. I had severe hot flashes every few seconds 24/7 for three months even with add back estradiol. Worse, the estradiol made my migraines flare and so I was a hot mess. After stopping estradiol, my migraines continued to flare and still do without supplementation. I was also having diverticulosis flares every month sometimes twice a month. I had terrible gas and severe IBS symptoms. My work leave, FMLA and advanced sick leave were dwindling from all the visits to the various doctors. Within three months of my last Lupron injection, I was forced to retire or be fired for not being able to work. I never fully recovered from the Lupron.

Finally, a Hysterectomy

My GYN finally agreed to the hysterectomy in 2018 where they found my left ovary and left fallopian tube in one mass of adhesion scarring with my large intestine. The GYN removed the left polycystic ovary, left and right fallopian tubes along with my uterus, which had fibroids, and cervix leaving me with just my right ovary. Prior to the hysterectomy, I began noticing some numbness and cramping or burning in my feet at work that was much worse at night. I had the same kind of cramping and burning in my lower back too. I would later learn that these are symptoms of thiamine deficiency. Trying to keep it together at work with all of this was a nightmare.

Around this time, I also began having severe nausea and pain in my stomach. The GI doctors did an upper GI scope to confirm duodenal ulcers. The digestive issues, especially the diverticulosis should disqualify anyone from having Lupron as Lupron causes major digestive upset according to the FDA fact sheet. My digestive tract was inflamed from mouth to anus post Lupron. I had an inflamed esophagus and ulcers, diverticulosis flares, IBS with constipation and diarrhea and hemorrhoids that I couldn’t heal with meds. The low FODMAP diet helped though.

No More Pharmaceuticals

In 2019, I finally stopped taking all pharmaceuticals. No pharmaceutical made me feel better. Every medication I took for GI issues and neuropathy made me worse. I only took one for one or two weeks at a time to log all my side effects from each so I could have them added to my growing list of allergic reactions. I did have some sensitivity issues with prescription drugs prior to Lupron, just not as bad. I have the MC1R redhead gene. Redheads are more sensitive to pharmaceuticals and have more adverse reactions. I struggle with topical solutions as well. I couldn’t use estradiol patches because I’m allergic to the adhesive. Thankfully, my primary care physician also has endometriosis and suggested herbal supplements and remedies. All of this ,surprisingly, is from the veteran’s hospital. I was ordered by her to stop working. This was a final attempt to heal my ulcers, as they would eventually kill me if I could not find relief.

How I Healed Myself With Thiamine and Diet

I decided to try high dose thiamine after researching it via Drs. Lonsdale and Marrs and Elliot Overton. I started with 100mg daily for 6 months. Then 500mg for 3 months and currently 1000mg (500mg 2x daily). The thiamine works as well as the acupuncture with EMS. I also take Alpha Lipoic Acid and Dandelion root daily. The increases in thiamine are proving to be a significant factor in recovery. If I miss one day of supplements I’m sick for several days so I’m convinced that it is working.

To help myself heal, I no longer work a 9 to 5 job. I follow a low FODMAP diet with modification for diverticulosis and supplement with elderberry or dandelion for inflammation and immunity, turmeric, prebiotic + probiotics, magnesium for bone loss, palpations, anxiety, alpha lipoic acid for neuropathy, high dose thiamine for neuropathy, fatigue anxiety and brain fog, b vitamins and D3+K2 for b1 uptake regulation and delta 8 CBD for fibromyalgia pain and fatigue. I have regular chiropractor adjustments of my neck and lower back. Acupuncture and light therapy on my feet helped with the burning and cramping.

Where I Am Now

Currently, I have no endometriosis pain, only some lingering PMDD. I have no ovarian cysts and the migraines are not as frequent. Now only a couple a month versus weekly. I still have some burning and cramping in my legs and feet, but it is tolerable. Before thiamine, I was bedridden. The back and neck pain I had previously has improved with thiamine along with physical therapy/yoga and regular chiropractic care. I no longer experience diverticulosis flares with the new diet and supplements for inflammation like dandelion root, turmeric, and elderberry. I switch out the dandelion and elderberry because they work about the same. Depends on what is on sale.

I am able to stand for longer periods of time. My anxiety is significantly reduced, my palpations are gone, I can remember things, and my ADHD flare ups are minimal. In 2022, I only had two mild diverticulosis flares. Prior to the diet changes and supplements, I was having them once a month. I went from being bedridden completely to cooking (I still need to sit some), cleaning with short breaks, gardening with a sit on garden cart, and walking about a half mile every few days. I still have numbness in both feet. I am hopeful that lowering my A1C will resolve this. It may be permanent. Only time will tell. I’m going to the VA this week for a checkup and requesting more PT to see if it will help. They did an EMP on both legs with normal results. That was pretty painful but I felt nothing in my 3 little toes on both feet. Overall, I am doing much better with the higher dose thiamine and have much more energy.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Charcot Marie Tooth Disease and Thiamine: A New Genetic Connection

by Derrick Lonsdale MD, FACN, CNS

Published on February 15, 2023

12432 views

It is very probable that a non-medical reader, coming across this title, would not be further interested. Charcot was a famous neurologist in France, Marie one of his students, and Tooth was an English neurologist. They were the first physicians to observe a disease pattern that reappeared from time to time in their experience. Because the cause was unknown, their names were used to document the disease in medical texts. This post is being written to describe its complex genetic mechanisms that are coupled with thiamine metabolism and the fact that it is the most common inherited neuromuscular disorder.

Symptoms of Charcot Marie Tooth Disease

Symptoms commonly begin in childhood or early adulthood, although they may appear much later. Muscle degeneration in hands and legs appears together with a burning sensation in feet and hands. There is decreased sensation in the feet and hands and an awkward gait that is observed in the patient. Abnormal curvature of the spine, known as scoliosis appears and there is increased clumsiness and tripping.

Prevalence data from the general population is lacking. At present 47 hereditary neuropathy genes are known to be involved and it has been estimated that 30-50 genes are yet to be identified. However, in 2018, it was shown that deficiency of a single gene (DHTKD1) in mice caused them to develop the symptoms of the disease.

DHTKD1 and Thiamine

Maintaining the functional integrity of mitochondria, the energy producing organelles in cells, is crucial for cell function. Mitochondrial dysfunctions may alter energy metabolism and in many cases are associated with neurological disease. Although the function of DHTKD1 in the mitochondria remains unknown, it has been reported that there is a strong correlation with ATP production, the currency of energy metabolism. Genetically determined suppression of DHTKD1 leads to Impaired mitochondrial biogenesis and increased reactive oxygen species. In simple language, energy production is impaired.

What interested me was that the structure of the DHTKD1 gene is reported to be associated with thiamine. Mutations have been associated with certain metabolites in urine (2-amino adipic and 2- oxoadipic acids), Charcot Marie Tooth disease, and eosinophilic esophagitis (EoE). The pathophysiology of these two clinically distinct disorders remains elusive. It suggests that named diseases, each with its alleged distinctive laboratory studies, could all be the variable result of cellular energy deficit. It calls to mind the energy dependent General Adaptation Syndrome that gave rise to the conclusions of Hans Selye who described human diseases as “The Diseases of Adaptation”.

An experiment in rats investigated the long-term changes in brain metabolism after a single injection of 400mg/Kg thiamine. Protocols were established for discrimination of the activities of the two dehydrogenase complexes that constitute the enzymes derived from the DHTKD1 gene. The thiamine induced changes depended on brain-region-specific expression of the thiamine dependent dehydrogenases. In the cerebral cortex, the “thinking” part of the brain, both were relatively high and did not increase with thiamine administration. In the cerebellum, part of the automatic brain function, the original levels of both were relatively low and the activities of both were upregulated by the injection.

Energy Deficiency

The well-known effect of thiamine deficiency (TD) is the disease called beriberi. Because the brainstem, limbic system and cerebellum are peculiarly sensitive to thiamine deficiency, the autonomic nervous system becomes dysregulated, giving rise to symptoms of dysautonomia. Many case reports are to be found in the medical literature where a given disease has been found to be associated with dysautonomia, where the association observed is considered to be a mystery.

A case report of a single patient with eosinophilic esophagitis (EoE) was reported to have TD as the underlying cause of the associated dysautonomia. Since it is well known that sugar easily induces TD, the publication asks whether EoE is a sugar sensitive disease. Thiamine is a necessity for the metabolism of the vagus nerve, part of the autonomic nervous that is now known to control the mechanisms of inflammation, an essentially defense mechanism that occurs in many disease conditions.

Beriberi is variably polysymptomatic. None of the symptoms are exclusive to the disease. The reason seems to be adequately explained by the fact that it is the most obvious energy deficiency condition known. Potentially affecting every cell in the body, it would be expected to have its major effects in the most metabolically active tissues. It is well known that the brain, nervous system and heart are the organs that answer to that criterion. I have always been interested in seeing a written report of a neurological disease in which heart disease is seen as an unexpected complication. The observer usually believes that this represents the appearance of a second disease instead of looking for energy deficiency as the cause of both.

Protein Folding and Thiamine

Enzymes are proteins and are constructed from long chains of amino acids bound together, possibly by electro-magnetic attraction. When not in use, the chain has to be folded, presumably for storage. When required for use as an enzyme it has to be unfolded. The folding/unfolding details of these chains are exquisitely complex and repetitive but the mechanism remains unknown. Every polypeptide has the capacity to misfold and form a non-functional protein.

A normal protein called the prion protein exists in the body. Its functions are largely unknown. It is also the key molecule involved in the family of neurodegenerative disorders, also known as prion diseases. Several forms of disease result from an accumulation of a variably misfolded isoform of this protein. Of profound interest, it has been reported from animal studies that the prion protein binds thiamine, leading to the hypothesis that thiamine metabolism might supply the energy required for protein folding and unfolding.

Genetics Versus Epigenetics in Charcot Marie Tooth Disease

The relatively recent discovery that nutrients can have an effect on genes has led to the science of epigenetics. It seems to be apparent that, although genes can cause a disease on their own, many genetically determined mechanisms may be insufficient to cause a disease by themselves. Perhaps the symptoms of a well-established, genetically determined disease such as Charcot Marie Tooth disease might respond clinically and biochemically to an epigenetic trial of a nutrient associated with its structure and consequent function. The symptoms of Charcot Marie Tooth disease are those that could be expected from a deficiency of energy affecting the genetically determined associated cellular defects.

Parkinson’s, Alzheimer’s, Huntington’s diseases and prion disease, as well as a variety of other disorders, are regarded as examples of an anomalous aggregation of proteins and all associated with thiamine. Also, Costantini and his group have shown that Parkinson’s disease responds clinically to high dose thiamine. This group had already reported that high dose thiamine had relieved the fatigue associated with ulcerative colitis and Crohn ‘s disease, implicating that energy deficiency was the cause of fatigue. The question arising from all of this – is energy deficiency the cause of disease, represented in a massive conglomerate of different manifestations ?

Conclusion

Charcot Marie Tooth is now an old-fashioned way of describing a disease, particularly because a single gene defect has been implicated to be responsible for this disease as well as EoE, two entirely different conditions. It is suggested here that the genetic changes lead to energy deficiency in the affected cells. Evidence is accumulating that Selye’s explanation of human diseases as the “diseases of adaptation” may be correct. Perhaps it may lead to general acceptance of Orthomolecular Medicine as proposed by the late Linus Pauling.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Benefros at English Wikipedia, CC BY-SA 3.0 <http://creativecommons.org/licenses/by-sa/3.0/>, via Wikimedia Commons.

This article was published originally on July 14, 2021.

Lessons Learned About Recovering From Thiamine Deficiency

by AMZ

Published on February 1, 2023

40227 views

lessons learned with thiamine deficiency

It has been a year since I started taking high dose vitamin B1 (thiamine) for a variety of chronic symptoms including: Lyme disease, CFS/ME, endometriosis, histamine intolerance and other food intolerances, SIBO, chronic complicated migraine with aura, chronic insomnia, chronic severe light and exercise intolerance, to name a few. By traditional medicine, each of these conditions was considered unique and thus treated individually. I have learned that they are not separate conditions, but simply different manifestations of disturbed mitochondrial metabolism. In my case, all of this was related to deficiencies in thiamine and other vitamins and minerals. My recovery has been difficult and I have made many mistakes along the way, but hopefully, I learned from them. I am publishing my story here so that you may also learn from my experience. You can read my original story here.

Lesson 1: Magnesium Formulation Is Important

Magnesium is required to change thiamine from its free form to the active form called thiamine pyrophosphate (TPP). Without sufficient magnesium, supplemental or consumed thiamine remains inactive and basically useless. This means that magnesium deficiency can cause a functional thiamine deficiency. I understood this, but what I did not understand, was that there are many different formulations of magnesium supplement, each with pros and cons relative to the individual’s specific needs. I thought they were all interchangeable.

For me, and for individuals with heart related symptoms, magnesium taurate is preferred. One of my first mistakes I made was to ignore Dr. Lonsdale’s comments in which he talked about the importance of taking magnesium taurate. I understood it as meaning that magnesium was important and did not understand that it was a special form of magnesium with cardio protective effects due to the taurine content.

When I initially took magnesium taurate, I noticed an increase in my wellbeing, especially in the fatigue and headache that I would develop after walking around the house or being intellectually active, but I didn’t know that it was the taurine component that was responsible for that change. For a while, I stopped taking magnesium taurate and returned to using other forms of magnesium (magnesium citrate or malate). They did not help as much as the taurate. During this time, I also realized that I do not tolerate magnesium glycinate or bisglycinate. If I take that form, I have a terrible headache on the right side of my head. The glycine activates glutamate via NMDA receptors in the brain causing some excitatory activity. This may be why I could not tolerate it. Others do not have a problem with magnesium glycinate.

Over the last two weeks, I was that taking magnesium malate and taurine separately. I wanted to avoid spending a lot of money on magnesium taurate, so I tried to buy a cheap form of magnesium – magnesium malate – and combine it with taurine which is inexpensive when purchased in bulk. This did not provide the same benefits as magnesium taurate. I experienced chest pressure and pain and my resting pulse went back to being higher than 65-70 BPM. Once I began taking magnesium taurate again, my heart rate and chest pain/pressure disappeared.

So the lesson here, is that different formulations of magnesium work for different people. It is important to research which form may work better for you and your set of symptoms and not to assume they are interchangeable.

Lessons 2-3: TTFD Degrades with Heat and Light and Interruptions to Thiamine Repletion Cause Setbacks

One other important thing I realized was that thiamine is destroyed by UV light. This meant that in August, when I put my TTFD powder (a form of synthetic thiamine that crosses cell barriers more easily) in a transparent container on the kitchen table, and left it there all day long while sunlight shone directly on it through the big windows in my kitchen, it was being destroyed every day. I experienced a big crash during that month, especially since I was taking all the other vitamins and minerals that were serving as co-factors. I could not explain it and was thinking that even this therapy was losing its effect, that my recovery was over, and that I could no longer hope for a better quality of life.

However, in September, I received my new order of TTFD powder. The very day I received it, I took my regular dosage from this new batch. The difference was incredible in terms of my symptoms. It was night and day. The effects were truly remarkable and unmistakable. I’m very careful now with my TTFD powder and make sure it stays in an opaque container.

Lesson 4: Treating My Carnitine Deficiency. Once Again Formulation Matters.

Another thing that I had not been able to fix was my carnitine deficiency. This was discovered by the neurologist who suspected that I was dealing with a FAOD (fatty acid oxidation disorder) or a mitochondrial disease back in February. Free carnitine levels in blood are supposed to be between 17 and 49, while mine was 6. I tried taking various forms of carnitine (L-carnitine, acetyl-L-carnitine, l-carnitine tartrate, Optimized Carnitine, propionyl-L-carnitine) but they all had a laxative effect which was aggravating my symptoms. I asked my neurologist if there were injections with carnitine that could replace the pills, but was left to figure it out for myself. And I did.

Through much research, I found a form that worked for me. It is called Propionyl-L-Carnitine. This form of carnitine is a known agent that protects against ischemia – quote from the linked study:

Free CoA and propionyl-CoA cannot enter or leave mitochondria, but propionyl groups are transferred between separate CoA pools by prior conversion to propionyl-L-carnitine. This reaction requires carnitine and carnitine acetyl transferase, an enzyme abundant in heart tissue. Propionyl-L-carnitine traverses both mitochondrial and cell membranes. Within the cell, this mobility helps to maintain the mitochondrial acyl-CoA/CoA ratio. When this ratio is increased, as in carnitine deficiency states, deleterious consequences ensue, which include deficient metabolism of fatty acids and urea synthesis.

This form of carnitine has made a huge difference in my health, especially with one particular symptom – the wet cough that had accompanied my walking around the house since April 2021.

More Energy and Exercise Tolerance with the Correct Supplements

In October, I began taking magnesium taurate and I also added higher doses of potassium to my regimen, just to see if I tolerated them. I had taken rather lower doses of potassium on and off since starting high dose TTFD. One of the things higher potassium solved, was the aftertaste (or after smell) that I used to get with 300 mg TTFD. I know most people dislike it, since it’s a sulphur smell, although I never disliked it.

After about two weeks on magnesium taurate and higher potassium intake with every dose of TTFD, I began propionyl-L-Carnitine HCL and Optimized Carnitine again. I noticed that they no longer had a laxative effect and I doubled my dose of propionyl-L-carnitine HCL so that I was taking about 600 mg three times a day, combined with one capsule of Optimized Carnitine.

After about a week, I noticed that I had more energy. I no longer needed to eat every three or four hours, I no longer had dyspnea or wet cough during the day when I was walking around the house. All those symptoms speak of cardiomyopathy and were resolving with the supplements. I still need to avoid sleeping on my left side and instead sleep on an incline on my back to be able to sleep through the night, but it my sleep is so much better now. My headache, something that has tortured me since I attempted intermittent fasting in 2018, is now gone. This makes me think that the right-sided headache is one of the symptoms of my heart not being able to do its job properly.

One of the things that helps the most with mitochondrial biogenesis is exercise and it is highly recommended for people with mitochondrial disease. However, in many studies it is noted that if cardiomyopathy is present, then this therapeutic cannot really be used. This is important because many people recovered and improved their exercise intolerance, but still develop symptoms after too much physical effort and wonder what they could further do to improve their symptoms.

After finding the right supplements to correct my deficiencies, I’m able to walk around the house without it aggravating or triggering my symptoms. Prior to this, I was largely bedridden and would have flares every time I attempted to do anything. I have a device that measures how many steps I take and it shows that I walk at least 1000 steps per day when I do nothing and spend 95% of the day in bed.
Now I’m able to go out and walk around my apartment building, which is about 150 meters and do not suffer any consequence. I tried walking more than that and if I do, my main symptoms come back (insomnia, heart symptoms and headache). It is progress, but I still have a long way to go.

I am also capable of learning a little bit of German every day. While my memory is still very poor, at least what I learn “stays” in my brain and the knowledge/understanding of the language accumulates slowly day by day. Intellectual activity no longer triggers the terrible, hours-long headache it once did.

Improved Sleep: Correcting the “Histamine Bucket”, Insomnia, and Heart Symptoms

Since becoming ill, I have had insomnia, likely due to my heart struggling to maintain a constant rate and rhythm. One of the very first things I heard that could explain my constant awakenings especially around 2-3am in the morning is the theory of the “histamine bucket”. This theory argues that around 2-3 am, there is some shift in our body’s physiology and histamine is released. Thus, if you already have a lot of histamines in your body, due to mast cell activation or low DAO, your histamine bucket is full and it will make you wake up. While this is plausible, I do not believe it is sufficient to cause these early morning awakenings. It is not a cause in and of itself, but one of the many things that get dysregulated downstream after nutritional deficiencies are ignored for a period of time.

My chronic early morning insomnia began in 2015, when my thiamine levels dropped and the aggravated mitochondrial disease began to unfold. I remember waking up and I would feel my heart beating more strongly (though not pounding), sometimes I would hear a pulsatile “whoosh” sound in my ear. I would also feel weird sensations in my chest, though not pressure. During those months, I would experience on and off dyspnea while walking to my office. I didn’t think anything of it because I approach my health in the exact opposite manner people with real hypochondria do. I just thought it was a subjective “feeling”, thus not worthy of an inquiry into a possible objective cause for it.

The experience I had in the last few weeks with the supplements mentioned above makes me doubt that mast cell activation or histamine “bucket” overflow are the main causes of waking up constantly at 2 or 3 a.m. I believe it’s most likely connected with the impact histamines have on the heart – they are a known factor in developing heart failure and using antihistamines does help in preventing/postponing the onset of heart failure. This also explains why of all medications, antihistamines were the only ones that helped with a lot of my symptoms in 2016/2017.

When I started taking magnesium taurate, potassium in high enough doses and propionyl-L-carnitine, my heart symptoms improved and my sleep improved. Recently, I woke up at 3 a.m. and I immediately took a low dose of magnesium taurate and a little bit of potassium citrate. I fell asleep again in 15 minutes and in the morning I felt ok. In the past, when I would take something like L-theanine. It would force my body to go back to sleep immediately after 2 a.m., but I would feel much worse in the morning, more than if I just had insomnia.

Restoring Normal Heart Rate

One of the most important things has been reducing my resting pulse from 75-80 BPM to my normal, prior to 2016 resting pulse which used to be 60-65 BPM. I remember I used to complain about it and doctors or nurses just brushed me off. They would say that if it is under 90 BPM, then it is not a medical symptom of anything. I knew they were wrong, but how could I argue? Somehow these people in white coats think that heart failure or other cardiac diseases start out of the blue, when in fact these diseases represent years and years of ignored symptoms before the onset of the full-blown disease with typical manifestations is recognized.

Lessons Learned

Everything that helps my heart function better and recover faster improves all of my symptoms, no matter how much they may seem unrelated. This is what I observed about my own body and I encourage everyone to listen to their body and understand that all symptoms are related.

If one version of one supplement does not work, try another form and combine it with different forms and dosages of other supplements. By supplement, I understand all substances that are naturally found in food or produced by the body.

When I saw that simple forms of L-carnitine don’t have an observable effect, I simply started searching for better forms of carnitine and found propionyl-L-carnitine, which is the physiologically active form of carnitine. Why I looked for other forms of carnitine? Because I learned from experience that high dose vitamin B1, as thiamine HCL didn’t help, but that high dose Allithiamine (a formulation with TTFD) helped and still helps my body working again as it should.

I found taurine (again) by searching for supplements that improve heart failure symptoms. When I first heard about it while reading one of Dr. Lonsdale’s comments, I didn’t understand why it was important.

No one should ever quit trying to figure out their own matrix of symptoms. Begin with the vitamins and minerals, while at the same time addressing infections, limiting damaging diets, limiting exposure to toxic substances and so on. I firmly believe that all diseases with chronic fatigue involve some degree of mitochondrial dysfunction – inherited or acquired. The prototype documented, unquestionable illness that causes hundreds of symptoms, i.e. a multi-systemic illness, is inherited mitochondrial disease.

I know personally of two other people who were completely bedridden, suffering from constant light intolerance, having to live in my bed for two years with a sleeping mask all day and all night, unresponsive to any treatment or approach promoted by the online integrative medicine doctors and communities. I did not think I would ever be able to become house bound, not able to tolerate light, to think or cook for myself. The ability to no longer be bedridden and forced to live in total isolation in darkness and to be house bound is nothing short of a miracle. I owe that to thiamine.

Usually people who end up in that state for so long never recover because all known alternative treatments are exhausted and high dose thiamine for chronic illness is virtually unheard of. I will make sure to do everything in my power to change this, no matter the costs, because there’s just too much unnecessary suffering out there.

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This article was published originally on December 9, 2021.

The Red Thread and Thiamine

by Joanna

Published on January 19, 2023

21182 views

There is a saying in China about a Red Thread connecting people who are destined to meet and/or help one another in a profound way no matter how far apart they may be. Our adopted daughter Abby is that red thread. Abby was abandoned and found on the day our oldest daughter, Kayla, turned thirteen. It was at this time Kayla’s health issues were becoming worse. Although we didn’t know exactly what was amiss, we knew that something was wrong. In our efforts to help Abby, our family’s health issues were brought into stark relief. It seems that all of us have suffered from longstanding thiamine insufficiency. Even though my two daughters were born worlds apart, that red thread connects us. We published Abby’s story last week in the hopes that it might help someone else. Here is Kayla’s story.

Unhealthy Beginnings for My Beautiful Daughter: IVF and Induction

Common sayings like ‘you are what you eat’ can be haunting, leading to guilt when we see our children suffer the consequences of our own ill health, especially during pregnancy. My gut was messed up and had been for a very long time before becoming pregnant. I was likely deficient in thiamine and other nutrients and perhaps that is why I struggled to get pregnant in the first place. Sometimes gut dysfunction is obvious, as with constipation or diarrhea, but more often it manifests itself in other ways. That was me. I had/have Ehlers Danlos Syndrome (EDS) and most likely also, Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia syndrome (POTS). I did not know any of this though before pregnancy and have only recently, after hours upon hours of research, come to learn how my health impacted my daughter’s health.

Kayla was our first hard-fought-for child. We were married 10 years and had undergone numerous fertility treatments before we finally achieved a successful IVF. Looking back, I realize that I was not healthy prior to or during my pregnancy, even so it was mostly an uneventful pregnancy with little to no typical unpleasantries. I had low progesterone early on that required progesterone injections and suppositories, but after 13 weeks everything stabilized. I had a high blood pressure reading at only one routine visit in my 39th week. The doctor decided to induce. We didn’t question it at the time, but later did. At the hospital, he administered Pitocin, a synthetic oxytocin, without any nurses in the room and left. The nurses later commented that they were surprised, since my blood pressure was back in the normal range upon admission. Pitocin is just one of my regrets. Why was my body not triggering labor? Gut dysbiosis? Maybe/possibly/probably or maybe she just wasn’t ready to come out.

A Truly Gifted Child

Kayla was an extremely bright child. She wanted to learn chess at four years old. By age 9, I stopped playing with her because she always won. She gave her math brilliant-grandfather a run for his money. She was homeschooled through 9th grade followed by private and then public school. She was a straight ‘A’ student, participated in various athletics (swim, track, dance, horse riding, etc.) and mastered two musical instruments by the end of high school. Kayla ranked in the top 5th percentile nationally and did well in first semester of college, but little did we know how precarious her health had become. Perhaps because of her intelligence and achievements, many of her health issues and difficulties were disregarded by physicians. On the surface, she looks well. She is very high functioning, but she has been plagued with an assortment of complicated and largely unrecognized health and neurological issues since birth. During her first semester of college, a series of stressors brought her health crashing down and she is only now beginning to recover. Part of her recovery has been diet, part involves thiamine, but we are still missing some pieces, which is why we are publishing her story.

Early Childhood Symptoms and Triggers

Her early childhood was marked by early bouts of bronchitis necessitating antibiotics. She suffered croup through age 7 years and seasonal allergies through her teens for which she used Claritin regularly. Nighttime enuresis was a problem until we removed gluten from her diet when she was 12 years old. Similarly, her speech was often and seemingly randomly slurred. She received speech therapy through the school to no avail. In 2018, we removed dairy from her diet and the slurring disappeared. It appears that just as a gluten reaction triggered her nighttime enuresis, the ingestion of dairy was some sort of trigger for her slurred speech. I should note, before learning this, we experimented with probiotics, fish oils, digestive and pancreatic enzymes, and a variety of other supplements off and on for years with no noticeable or lasting changes. Her younger years were marked also by body temperature dysregulation, i.e., hot in the winter, cold in the summer. Finally, most things, not all, came easy to her. She had extreme strengths and weaknesses with her strengths often masking her weaknesses. Noticed by many of her extracurricular teachers hard things seemed easy, and easy things hard. Her brain craved complexity.

Vaccinations, Cyclic Fevers, and Green Drinks

In her preteen years, she received numerous vaccinations (required and strongly recommended) prior to our trip to China to adopt her sister. Shortly after, she began to develop worsening mood swings, anxiety, depression, brain fog and has experienced dizzy spells off and on since then.

When her menses began, she bled heavy for three straight weeks. Her doctor put her on birth control pills to stop it; again, a symptomatic treatment. She was borderline to severely anemic and often had PMS and painful periods.

During her teen years, she had repeat and unexplained fevers. She was sick with high fever/flu-like symptoms for three days every four weeks for three years. She’d get sick like clockwork! She would become weak, sleep a LOT, as if she were in a coma. Her doctor was stumped. I had been reading a lot about the use of systemic enzymes used by German doctors. The book by Karen DeFelice mentioned viruses often have a cyclical pattern. So we used high doses of ViraStop2x according to her protocol for a 3-week “holding spell” and it was gone. No more cyclical episodes.

In trying to get healthier, she began “green drinks” (spinach/fruit) 5-6x week. Six months later she was very sick: anemic again, double ear infection, abnormal EEG with heart palpitations, chest pain, and shortness of breath. The cardiologist had put her on a heart monitor for three days, but the results were normal. Perhaps oxalates? I began learning more about oxalates and we began eating less of these foods overall. I’m grasping at straws…

The Red Thread and Thiamine

In 2018, we learned about TTFD/thiamine and began taking Sulbutiamine. My younger daughter, Abby, has improved immensely. In fact, my entire family now uses thiamine and we all feel much better. Before taking thiamine, we all used to be so tired after spending a day at the beach and everyone would need to nap. Now, after supplementing with thiamine for a while, everyone still has high energy levels after these trips. Except for Kayla. Her results with thiamine have been mixed. There seems to be more at play. Perhaps she requires a higher dosage of thiamine or maybe additional nutrients are needed.

Her recent labs for CBC/CMP, thyroid, A1C, vitamin D are all normal. Manganese is low and prostaglandin F2 is elevated. There is some indication of malabsorption based on her bloodwork. Recently, an Organic Acids Test indicated normal oxalates, low dopamine and serotonin, and extremely high ketones/fatty acids. She has had high folate levels in the past, but at present are normal. Her B12 levels at present are elevated.

In 2019, she began having occasional extremely painful periods where she would be on-the-bathroom floor curled in the fetal position until Ibuprofen kicks in. Her skin is often very pale. Her doctor is not concerned about the increasingly painful menses or the ketones/fatty acid elevations.

My frustration as a parent is that because most of my child’s bloodwork is normal, the doctors write-off her symptoms as stress-related and recommend things like yoga, meditation or saunas or some fluff. Not that these things are bad, but there is something more at work here and no one seems interested in figuring it out. I am bothered that when they do see markers of inflammation or malabsorption they ignore them or really don’t know what to make of it.

Environmental Causes Of Ill-health and Longstanding Thiamine Insufficiency

Over the course of these last years, I have come to realize how important diet and environment are to health. When the pond is poisoned, sadly the tadpoles are hit first, are hit the hardest and display the affects most noticeably. Our youngest child was hit hard. Her circumstances prior to adoption were not conducive to health and she has had many struggles to overcome those early stressors and nutrient deficiencies. Likewise, owing to my ill-health prior to and during my pregnancy and the subsequent western medical treatments, Kayla struggles too. The pond was poisoned for both of them. All lifeforms that drink from a poisoned pond will manifest problems at some point, in some way. Perhaps if we had known about thiamine when they were younger, their problems wouldn’t have manifested the way they did.

Fortunately, Kayla has always eaten healthy, and has been active and athletic throughout her life. As an adult, she experiments with the removal of foods for periods of time to see if things improve, such as grains or cow’s milk and she is cooking creatively. She has been sugar-free for over a year. She takes vitamins and minerals and Sulbutiamine. She recently switched to Lipothiamine and Allithiamine and is now slowly increasing it to see if her dizziness will abate at some point.

I would trade all of her past accolades to have her in better health. We don’t know where her road will lead. Healing is multi-dimensional and someday we hope to look back at today with those oft used words “remember when…”.

Michelangelo was nearing 90 when he said “I am still learning.” I hope to be too.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This story was published first on August 31, 2020.

Treating Intractable Insomnia and Cerebellar Ataxia With Thiamine

by Arlyn Smith

Published on January 17, 2023

8583 views

Twenty years ago, I attempted suicide after years of alcohol and drug abuse. I almost succeeded, but by some miracle I survived. I suffered a cerebellar stroke and as result was left with severe cerebellar damage. The doctors said that I had lost almost 75% of my cerebellum. I couldn’t walk or talk, I could not swallow and was barely functioning, if you could call it that. At some point, I decided I would live and forced myself to improve. I worked the physical therapy and eventually began lifting weights. I wrote about my journey here. Despite my gains in strength and balance though, since the stroke I had suffered from severe and intractable insomnia. Although I was under the care of multiple doctors, none could offer any help beyond increasing this or that medication, none of which worked. Insomnia is common in individuals with cerebellar injury. Then I learned about thiamine.

Persistent Insomnia Treated with Thiamine

Around the time my initial article was published, I began supplementing my diet with thiamine. This vitamin may have been mentioned in passing by some of my physicians, but it was never prescribed or even really emphasized to any great degree. Neither was it ever touted by the medical community during my initial stroke recovery in 2003. I am fairly sure much of the reluctance to use thiamine could be attributed to the pervasive fear of it not benefitting my health.

Being entrenched in the world of mental health and alcoholism for about 25 years (sober 9), I am well aware of Wernicke-Korsakoff’s syndrome. I had heard about massive doses of thiamine being administered to others in medical detoxification facilities. I also have loved ones grappling with Parkinson’s Diseases. I quickly began to see how many of our neurological symptoms were similar, and that thiamine was slyly mentioned to help all of us.

In early 2021, it was strongly suggested that I gradually increase to a large dose of thiamine (not by doctors, mind you, but by others from this website). At the time, I was lucky if I slept 3 hours per night, which of course, exacerbated my ataxia symptoms. I was on so many medications that it raised red flags, but I was never warned about the negative neurological effects. And worse yet, nothing was working.

Once my initial dose of thiamine was entrenched in my system (50 mg of Thiamax), I began sleeping with greater ease. At first, this was approximately an hour, but I discovered that I also slept more soundly and had acquired greater rest during the night. As time progressed, my sleep patterns became increasingly regular.

Better Functioning With Improved Sleep

For several years, I have been making progress in all areas of my life. By August of 2022, thanks to the thiamine, I was off of all prescription medications. I was sleeping through the entire night, soundly. I was also able to complete difficult feats at the gym without falling asleep on a mat in the stretching area (usually resulting in me being taken home, so I didn’t sleep at the gym.) This is one of the reasons that I didn’t train publicly until recently. With my sleep problems, I wasn’t sure if I’d be overcome with an insatiable need to sleep mid-workout.

In addition to the improvements in sleep and the elimination of medication after thiamine came on board, I was able to lift a barbell by myself, while standing. This is no small feat for someone with ataxia. Remember, I was told I would not walk again, or function in any semblance perceived as normal. They said that all my neurological systems had crossed the threshold believed salvageable. In September of 2022, I competed in my first powerlifting meet, where I deadlifted 182 pounds and bench pressed 78 pounds. I am currently deadlifting 225 pounds (January 2023). While I am still ataxic and I still have struggles relative to my injury, I have improved so much since beginning the thiamine.

thiamine for insomnia and cerebellar ataxia — Me lifting 225lbs at the gym.

As I write this, right before the New Year of 2023, I am overcome with the amount of remarkable progress that has been made in my life since August. To deny that would fact would be denial of any amount of truth or reality in existence. I fail to see how anyone can deny the differences in my life since using regular thiamine.

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Is Thiamine the Answer?

by Derrick Lonsdale MD, FACN, CNS

Published on December 29, 2022

19880 views

Since we have shown that many people with complex disease patterns respond to megadose thiamine and magnesium, irrespective or their symptoms, we have concluded that disease is due to a breakdown of health from energy deficiency. We have proposed that 3 interlocking circles (as in Boolean algebra), labelled Genetics, Stress, and Energy (or Fuel) must be considered singly or collectively as the cause of any disease. Energy is the force that enables any form of mental or physical body function. Its deficiency affects one or more of the three circles.

Genetics is not often a sole cause of disease. It usually requires other factors and genetically determined disease can often be treated by epigenetic energy stimulation. Symptoms of Type 1 diabetes often appear in middle age, often after a mild stress event such as a common cold. Surely it would appear at birth if genetics was the sole cause.

Any form of stress (infection, trauma, prolonged mental stress) demands cellular energy to meet it. The hind brain controls the complex response and is automatic. This part of the brain is highly sensitive to cellular energy deficiency and thus, energy stimulation is the essential factor required to treat any disease.

Beyond Deficiency

It has been shown by Antonio Costantini’s group that mega-dose thiamine treats Parkinson’s disease, presently deemed to be incurable. They have reported similar clinical benefits in Friedreich’s ataxia (another neurodegenerative disease), Multiple Sclerosis and Fibromyalgia, suggesting that each of these diseases, rather than having separate causes, are all energy dependent manifestations of disease. Just last year, a group of researchers linked a damaged thiamine/biotin transporter gene to Huntington’s Disease. Just this month another group has found that thiamine/biotin treatment compensates for the genetic dysregulation, restores function, and rescues neuronal pathology associated with Huntington’s Disease in mice.

A publication decades ago in a prestigious medical journal reported that 252 different diseases had been treated with mega-dose thiamine, with varying degrees of success.

This information, published in peer-reviewed medical literature is startling, because thiamine, in minute doses, is thought to have its sole responsibility as a vitamin. To use it as a completely non-toxic drug offends the present model used to explain disease. Also, it demonstrates that our knowledge of vitamins is incomplete.

Children’s Health and Thiamine

While I was working at Cleveland Clinic in the seventies as a pediatrician, many emotionally disturbed children were referred to me by pediatricians in private practice in the Cleveland area. I found that the diet of these children was full of empty calories due to their indulgence with candy, soft drinks and a variety of substances usually known as “junk foods”. They had been treated with a variety of pharmacological drugs that either had no effect or even made the clinical situation worse. I treated them with large doses of thiamine and their symptoms disappeared. The explanation by my colleagues was the traditional one, “spontaneous remission”, usually used to explain a mystery cure. My explanation was that deficiency of brain energy was responsible for their symptoms. Thiamine was stimulating its cellular synthesis.

The RDA for Thiamine and High Caloric Intake

I looked up the history of the establishment of the Recommended Dietary Allowances (RDA) for these essential substances occurring in natural foods. I found that the original recommendations had been made by a committee of “experts” and there was surprisingly little science involved. There was no attempt to tie the RDA of the vitamin to the calorie concentration.

The dietary supplementation of vitamins to selected foods by the food industry was thought to have completely removed vitamin deficiency disease from America. Consequently, doctors in practice are commonly seeing patients with many symptoms and failing to recognize the ancient disease known for centuries as Beriberi. Because the laboratory tests, used to confirm the nature of the disease, are normal, the many symptoms described by the patient gives rise to a diagnosis of psychosomatic disease by the doctor. Even worse, the patient is told that “it is all in your head” and he or she is advised to “pull him (her)self together”.

Deficiency of thiamine and magnesium, both essential to cellular energy production in the body, need to be in a concentration that is sufficient to oxidize the calorie concentration. That explains why the concentration of blood thiamine is usually normal in this common polysymptomatic disease, because the doctor fails to recognize the overload of “empty calories”. The concentration of thiamine would be normal for a healthy calorie load, as would exist in an organic natural diet.

We have reported high calorie malnutrition as a common cause of this widespread disease. Dysautonomia is responsible for the symptoms because the hind brain, where the control mechanisms of the autonomic nervous system exist, is highly sensitive to cellular energy deficiency. It matters little whether it is called Beriberi or high calorie malnutrition as long as the biochemical cause is understood.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Hans Selye and the Stress Response

Human Stress: Surviving a Hostile Environment

Energy Metabolism, Physics, and Chemistry

Of Mitochondria and ATP

Health and Disease in the Context of Energy

Why Thiamine

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Endometriosis in the Colon and Lupron

Finally, a Hysterectomy

No More Pharmaceuticals

How I Healed Myself With Thiamine and Diet

Where I Am Now

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Symptoms of Charcot Marie Tooth Disease

DHTKD1 and Thiamine

Energy Deficiency

Protein Folding and Thiamine

Genetics Versus Epigenetics in Charcot Marie Tooth Disease

Conclusion

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Lesson 1: Magnesium Formulation Is Important

Lessons 2-3: TTFD Degrades with Heat and Light and Interruptions to Thiamine Repletion Cause Setbacks

Lesson 4: Treating My Carnitine Deficiency. Once Again Formulation Matters.

More Energy and Exercise Tolerance with the Correct Supplements

Improved Sleep: Correcting the “Histamine Bucket”, Insomnia, and Heart Symptoms

Restoring Normal Heart Rate

Lessons Learned

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Unhealthy Beginnings for My Beautiful Daughter: IVF and Induction

A Truly Gifted Child

Early Childhood Symptoms and Triggers

Vaccinations, Cyclic Fevers, and Green Drinks

The Red Thread and Thiamine

Environmental Causes Of Ill-health and Longstanding Thiamine Insufficiency

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Persistent Insomnia Treated with Thiamine

Better Functioning With Improved Sleep

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Beyond Deficiency

Children’s Health and Thiamine

The RDA for Thiamine and High Caloric Intake

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