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Is Thiamine the Answer?

Published on December 29, 2022

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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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Problems With the Medical Model of Disease

by Derrick Lonsdale MD, FACN, CNS

Published on December 19, 2022

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The use of the word model is supposed to describe the nature of disease as it differs from that of health. Hippocrates was the first person to offer a solution to the preservation of health by saying “Let food be your medicine and let medicine be your food”. Throughout most of history there was no model and treatment was based on largely futile ideas. The present age of medical thinking was ushered in by the discovery of disease producing microorganisms. The model became “kill the microorganism, the bacterium, the virus, the cancer cell”. If no microorganism or cancer cells could be found, the remaining diseases were long considered to be a mystery.

Recent research has advanced the model by discovering that the brain controls inflammation through the vagus nerve by the use of metabolites called cytokines. However, the present medical model still dictates that the various symptoms that signify loss of health are put together in collections. Each is considered to represent a particular disease that has to be named for diagnostic purposes and that a cure for each is to be found from detailed research. So we now have literally thousands of different diseases, often being called after the person who first observed a particular symptom/sign collection, such as Parkinson or Alzheimer. Each of the named diseases is supposedly recognized by a collection of laboratory tests that are “diagnostic”. What is even worse, is that this collection is often called a syndrome and the first observer has his/her name appended. From that time on, this particular collection is known as “Joe Soap’s syndrome”. Fortunately, there is change on the horizon as we gradually realize that the human body is a “machine” whose function is metabolic in nature.

The Stress of Life

When I was in active practice, I discovered that thiamine could be used as a “drug” for many of the situations that I encountered, seemingly irrelevant to the diagnostic category with which I was supposedly dealing. I was thought of by my colleagues as a medical heretic. Since it had long been known that thiamine deficiency was responsible for the disease called beriberi, I studied the history of the early attempts to find its cause. Beriberi had existed for thousands of years and was still largely a mystery at the end of the 19th century. I found how easy it was for the investigators to be misled. In Eastern cultures rice had been a staple for centuries. At that time, factories had been built in China in which buildings had been separated by a corridor. In the summer months the workers would congregate in them to take their lunch. As the sun moved around, it would shine on the congregated workers and several of them would come down simultaneously with the first symptoms of beriberi. The obvious conclusion for the investigators was that this was some kind of infection since several of them had succumbed at the same time. When it was found that thiamine deficiency was responsible, an explanation was required for this simultaneous incidence of the disease.

We now know that ultraviolet light is a source of stress. It can be concluded that the affected workers had been marginally deficient in thiamine. They were either asymptomatic or had mild symptoms attributed to other causes. The stress caused by sunlight had provoked symptoms of the disease simply because the required energy was unavailable to achieve homeostasis. This intriguing discovery caused me to seek the work of Hans Selye, whom I visited in Canada. As I have written in several posts on this website, he had determined from the study of rats that each form of stress had to be resisted and required energy. He called it the General Adaptation Syndrome (GAS) and offered the idea that human disease was a lack of sufficient energy required for adapting to the more severe environmental influences encountered on a daily basis. This included severe trauma and infections. The energy deficiency conclusion of Selye was later backed up by one of his students who was able to produce the GAS experimentally in a thiamine deficient rat without using any form of experimental stress.

It seemed to me to be obvious that I had to study the way energy is produced in the human body if I were to understand the reality of health and disease. In Selye’s time energy metabolism was poorly understood and it was a mark of his genius that enabled him to suggest that it was energy deficiency that caused the collapse of the GAS. The reason that all animals, including humans, are living is because they construct energy from food and this creates a chemical called adenosine triphosphate (ATP). From there, electrical energy has to be created and that is the energy that we use for functional activity. The transition from chemical to electrical energy is not precisely known but there is some evidence that thiamine in the form of thiamine triphosphate (note the parallel with ATP) plays an important part. This triphosphate form is exceptionally high in the electric organ of the electric eel, capable of producing a paralyzing shot of electrostatic electricity to zap its prey. The electric organ is an adaptation of a nerve ending just like ours. It is obviously important to understand that this is an evolutional adaptation and does not mean that we can produce a high energy output from our nerve endings. Indeed, the evidence is strongly in favor of the energy being in microvolts. We are identifying the electrical potential when we perform an electroencephalogram or an electrocardiogram and a recent test has been devised using the electrical potential of a person with Chronic Fatigue Syndrome (Open Medicine Foundation April 2, 2021).

Many of the people reading the information on this website are themselves patients seeking help for their misunderstood disease. The history recorded in their posts is repetitive and in each case their reported symptoms are usually thought to be bizarre by the physicians that have been consulted. In the present medical model a “real” disease is called organic and is marked by a series of abnormal laboratory tests. When these tests are reported to be normal, the conclusion is nearly always the same. The symptoms are considered to be imaginary in a person who is thought to be psychologically abnormal. They are referred to as psychosomatic and the patient is told that “it is all in your head”. It is always surprising to me that the physician seems to have the belief that the bizarre nature of the symptoms is generated in the patient’s brain without consumption of energy, that thought processes or imagination are not the result of energy consumption by brain cells.

Distorted Truth

The real trouble is that the disease model represents a distortion of the truth. To make a diagnosis, it is inherently necessary that some of the presently used laboratory tests must be abnormal. No thought is given to the possibility that energy deficiency in the brain might be the cause of the symptoms. Therefore no effort is made to obtain the right laboratory tests. It demands a totally different way of thinking about health and disease. People affected by this kind of brain energy deficiency disease are often working and living ostensibly normal lives but suffering greatly. They are in fact experiencing early beriberi, a disease that has a long morbidity and a low mortality. They can go on experiencing these symptoms for years, but if they are completely ignored as psychological misfits, one can easily imagine that permanent damage will develop. Perhaps Alzheimer’s and Parkinson’s disease are really reflections of this permanent damage and that there will never be a “cure” for them. Attention to relatively simple symptoms, usually diagnosed and treated as variable named conditions such as “allergy” may be the only way in which these named diseases can be prevented.

To give an example of this kind of thinking, I was confronted by a 12-year-old African-American girl with extremely severe asthma occurring in individual attacks. Physical examination revealed that her body was covered with “goose bumps”. Because of this I came to the conclusion that her autonomic nervous system was dysfunctional and the cause of her asthma. I had already come to the conclusion that thiamine deficiency caused the energy failure that resulted in dysautonomia and that sympathetic/parasympathetic imbalance could affect the bronchial tubes. Without further testing, I gave her thiamine in pharmacological doses. It resulted in a complete disappearance of the asthma. This patient, at the age of 30 years, contacted me to let me know that she had only experienced two mild attacks of asthma in her 20s.

Health Requires Energy

What is important to remember is that any situation involving physical or prolonged mental stress requires energy in the brain, used to organize the complex defenses of the body. The recent discovery by Dr. Marrs and myself that thiamine deficiency in America is common, suggests that brain energy is insufficient in many people. If and when they are attacked by a microorganism such as Covid-19 it is possible their symptoms and their continuation reflect brain energy deficiency. Consequently perhaps they are unable to adapt and overcome the stress of the viral attack. It also suggests that symptoms expressed by so called Longhaulers might be helped by the administration of pharmacological doses of thiamine.

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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 April 7, 2021.

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Unraveling Symptoms and Syndromes

by Derrick Lonsdale MD, FACN, CNS

Published on September 6, 2022

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What Is a Syndrome?

A syndrome is the name given to a collection of symptoms and physical signs that have been observed in the past in a single patient or in a group of similar patients. This is often named after the first person to report this set of observations. It is called a syndrome when others have made the same observations, sometimes years later. The terminology is purely descriptive, even though there may be a constellation of abnormal laboratory tests associated with the clinical facts. Unfortunately, the underlying cause is seldom, if ever, known.

Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME). In a review, it is described as a “challenge to physicians”. Its prevalence is reported as approximately 1% in the general German population. The author states that there are no convincing models that might explain the underlying cause as an independent unique disease. A variety of conditions such as chronic infectious disease, multiple sclerosis, endocrine disorders and psychosomatic disease are suggested in a differential diagnosis. There is said to be a significant overlap with major depression.

Another review describes CFS as characterized by debilitating fatigue that is not relieved with rest and is associated with physical symptoms. In order to make the diagnosis, these authors indicate that at least four of the following symptoms are required to make the diagnosis. They include feeling unwell after exertion, unrefreshing sleep, impaired memory or concentration, muscle pain, aching joints, sore throat, or new headaches. They also say that no pharmacologic or alternative medicine therapies have been proven effective.

Fibromyalgia Syndrome

According to the American College of Rheumatology, fibromyalgia syndrome (FMS) is a common health problem characterized by widespread pain and tenderness. Although chronic, there is a tendency for the pain to fluctuate in intensity and location around the body. Deficient understanding of its true cause gives rise to the false concept that it is neurotic. It is associated with chronic fatigue and patients often have sleep disorders. It is estimated that it affects 2 to 4% of the general population and is most common in women. It affects all ages and the causes are said to be unclear. FMS patients may require psychiatric therapy due to accompanying mental problems. Gonzalez and associates concluded that the combination of psychopathological negative emotionality, interpersonal isolation and low hedonic capacity that they found in a group of patients has implications for the daily living and treatment of these patients.

Regional Pain Syndrome

Complex regional pain syndrome (CRPS) is another common and disabling disorder, characterized by defective autonomic nervous system function and inflammatory features. It reportedly occurs acutely in about 7% of patients who have limb fractures, limb surgery, or other injuries, often quite minor. A small subset of patients progress to a chronic form in which autonomic features dominate. Allodynia (pain due to a stimulus that does not usually provoke pain) and hyperalgesia (increased pain from a stimulus that usually provokes pain) are features of CRPS and require a better understanding.

Sleep Apnea Syndrome

Apnea is the term used for a temporary cessation of automatic breathing that usually happens during the night. This syndrome is described as the most common organic disorder of excessive daytime somnolence. Its prevalence is highest among men age 40 to 65 years and may be as high as 8.5% or higher in this population. It is associated with cigarette smoking, use of alcohol and poor physical fitness.

Similar Cause with Different Manifestations

Complex Regional Pain Syndrome is related to microcirculation impairment associated with tissue hypoxia (lack of oxygen) in the affected limb. Without going into the complex details, hypoxia induces a genetic mechanism called hypoxia inducible factor (HIF-1 alpha) that has a causative association with CRPS. It has been found that inhibiting this factor produced an analgesic effect in a mouse model. The interesting thing about this is that thiamine deficiency does exactly the same thing because it induces biochemical effects similar to those produced by hypoxia (pseudo[false]hypoxia). A group of physicians in Italy have shown that high doses of thiamine produced an appreciable improvement in the symptoms of three female patients affected by fibromyalgia and are probably pursuing this research. Dietary interventions have been reported in seven clinical trials in which five reported improvement. There was variable improvement in associated fatigue, sleep quality, depression, anxiety and gastrointestinal symptoms.

Dr. Marrs and I have published a book that emphasizes deficient energy metabolism as a single cause of many, if not all, diseases. The symptomatic overlap in these so-called syndromes is generated by defective function of cellular metabolism in brain. Fatigue is the best symbol of energy deficiency and the English translation of the Chinese word beriberi is “I can’t, I can’t”. Fatigue is a leading symptom in beriberi. When physicians diagnose psychosomatic disease as “it’s all in your head”, they are of course, quite right. However, to imagine or conclude that the variable symptoms that accompany the leading one of fatigue are “imaginary” is practically an accusation of malingering. The brain is trying to tell its owner that it has not got the energy to perform normally and the physician should be able to recognize the problem by understanding the mechanism by which the symptoms are produced. Every thought, every emotion, every physical action, however small, requires the consumption of energy. Obviously we are considering variable degrees of deficiency from slight to moderate. The greater the deficiency the more serious is the manifestation of disease that follows. Death is a manifestation of deficiency that no longer permits life.

Our book is written primarily for physicians, but it is sufficiently lacking in technological language to encourage reading by patients. It emphasizes, by descriptions of case after case, the details of how genetic risk and failed brain energy are together unable to meet and adapt a person’s ability to meet the daily stresses of life. Stress, genetic risk and poor diet all go together. A whole chapter discusses the functions of the autonomic nervous system and how it deviates when the control mechanisms in the lower brain are defective. This system is the nervous channel that enables the brain to communicate the adaptive body actions necessary to meet living in an essentially hostile environment. We show that an excess of sugar and/or alcohol produce deficiency of vitamin B1 and the so-called psychosomatic disease that results is really early beriberi “I can’t, I can’t”. Variability in symptoms caused by this effect is because the cellular energy deficiency distribution varies from person to person and is affected by genetically determined differences.

This is illustrated by the case of a boy with eosinophilic esophagitis whose first eight years of life were marked by repeated diagnoses of psychosomatic disease. At the age of eight, upper endoscopy revealed the pathology in the esophagus. There was a family history of alcoholism and he was severely addicted to sugar. Many of his symptoms cleared with the administration of a thiamine derivative and resulted in a dramatic increase in stature. No pediatrician or other physician whose attendance was sought through those first 8 years evidently had ever questioned diet or the gross ingestion of sweets. They simply treated each condition as a confirmation that they were “psychological”.

It is worth noting that references 1 through 4 refer to both CFS and FMS syndromes being affected by psychological issues. This implies that the patient is “inventing” the poorly understood (and often bizarre) symptoms as a result of neurosis. The unfortunate complainant may easily become classified in the mind of the attendant physician as a “problem patient”. I have become aware that this can rise to such a degree of misunderstanding that the patient is denied access to the physician and even to other physicians in the same clinic. It is indeed about time that an overall revision be made to the absurd concept that the brain can “invent” a sensation that has no importance in solving the electrochemical problem. When we see the statistics of incidence of these common syndromes we have to conclude that there is an underlying cause and effect that pervades the general population. We are very conscious that our cars need the right fuel to work efficiently but rarely take it into consideration that the quality of food is our sole source of energy synthesis.

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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 December 2019.

Thiamine for Fibromyalgia, CFS/ME, Chronic Lyme, and SIBO-C

by AMZ

Published on June 7, 2022

28290 views

The Road to Thiamine

In August 2020, I was at my wits end. I had developed gastroparesis in March 2020, after 10 days of metronidazole (Flagyl), for a H. Pylori infection and SIBO-C symptoms. After seven days, I developed the symptoms usually associated with the intake of this drug – nausea, confusion, anxiety, paranoid thinking and mild gastroparesis symptoms. I no longer had bowel movements initiated by my body and had to use enemas twice a week. This state continued and worsened until the end of July 2020, when I also had a surgery for stage 4 endometriosis.

I managed to stay alive those months by eating an elemental diet (90%) and a few bits of solid food such as white rice, goat cheese, or lean meat. After the surgery, however, my gastroparesis got worse. I contacted my family doctor at the end of August and told her that I could no longer eat any solid food without severe nausea and that I need to be in a hospital to be fed intravenously or with a gastric tube. She agreed that my situation demanded immediate attention and she wrote me the referral for an inpatient hospital admission.

I was lucky though that at that exact time, I stumbled upon the low oxalate diet mentioned by a member of a Facebook group. I joined the Trying Low Oxalate (TLO) group on Facebook and read what researcher Susan Owens wrote about oxalates. I started implementing it and realized that small portions of low oxalate food every 2-3 hours were accepted by my body. In a few weeks my gastroparesis symptoms were reduced and my belly pain diminished.

From the Low-Oxalate Diet to Discovering Beriberi Disease

At some point in September 2020, while researching oxalates, I found Elliot Overton’s videos on oxalates and I listened to them. I also read his articles on this website where he talks about allithiamine, a thiamine supplement that contains something called TTFD, as being something radically different in terms of its unparalleled effects on the human body. I was skeptical, because I had spent about 20,000 euro on supplements in the previous four years, each of them being promoted as health-inducing by big names in the field of chronic Lyme disease, MTHFR, CFS/ME, SIBO and so on, while their effects on my health were only partial and temporary at best.

I decided that this would be the last supplement I’d buy. The worse would be losing 40 euros and I had already spent too much on worthless treatments. I took 150 mg allithiamine + magnesium + B2 + B3 for 3 weeks and I was less tired, could move more around the house, and overall was feeling much better, even my extreme light sensitivity was subsiding. Then I stopped taking it, not sure it was doing anything. That’s when I knew that it had worked and that I needed it badly. I took the same dosage for another 2 weeks. The next three weeks I had to wait to receive it from the USA, and I was again completely bed ridden.

However, I used this time to read most of Dr. Derrick Lonsdale’s book on thiamine deficiency. I became convinced that I had dry beriberi and that most of my neurological symptoms were caused by thiamine deficiency. I also noticed that the dosage is highly individual and some individuals needed very high doses of thiamine per day in order to function.

I now understood, why 2015 was the year I became bedridden for most than 90% of the time: I spent 6 months in a very hot Asian country, as part of my master degree studies. The energy requirement to deal with the hot weather and the demanding job depleted my already low thiamine levels. At that time, I was on my way to diabetes as well. I had fasting blood sugar levels of 120 mg/dl. I could no longer assimilate/use carbs in the quantities my body required (70% of the daily caloric intake) and I was always hungry and always thirsty. Looking back on my childhood and my ever-declining health from 2008 onwards, it was clear to me that I had problems with thiamine.

The Astonishing Effects of Thiamine

In December 2020, I increased my thiamine dosage to 300 mg per day and I was astonished at the changes I experienced – an 80% reduction across all my symptoms and some even completely disappear.

Mid-January, I decided to increase my allithiamine dosage to 450-600 mg because I felt like my improvements were stagnating. I also noticed that during the days I was more physically active (meaning: I cooked food for longer that 10-15 minutes, my energy levels were higher when I was taking more allithiamine and I didn’t experience the typical post-exertional malaise I was used to in the past). I also noticed that taking allithiamine alone in high doses doesn’t work so well and that the active B complex capsules and the B3 I was taking did have an important part to play in how I felt.

In the beginning of February, I was craving sugars so badly, that I gave in and bought a cake for my birthday. I ate two slices and discovered that my mental confusion, the brain fog and generally poor cognitive skills improved “overnight”. I was astonished, since I had been led to believe that “carbs are bad”, “sugar is bad” and “gluten is bad” and that the problem was with the food itself rather than with my body missing some vital nutrients. I didn’t experience any side effects from the gluten either, even though my food intolerance test shows a mild reaction to gluten containing cereals.

By February 20th, this high-dose allithiamine ‘protocol’ and the ability to eat carbs again, eliminated all of my symptoms of SIBO-C/IBS-D/slow transit constipation, endometriosis, CFS/ME, fibromyalgia, constant complicated migraine with aura, severe food intolerances, including a reversal of my poor cognitive skills. I was able to discuss highly philosophical concepts again, for one hour, without suffering from headaches and insomnia.

Early Metabolic and Mitochondrial Myopathies

On February 21^st, I decided to go for a walk. I walked in total that day 500 meters AND walked up four flights of stairs, because I live on the 4th floor without an elevator. By the end of that day, my disease returned and I became bedridden again. I could not believe it. This was the only thing I did differently. I just walked slowly.

And so I searched the internet for “genetic muscle disease”, because my sister shares the same pattern of symptoms. A new world opened before my eyes. I found out that in the medical literature, exercise intolerance, post-exertional malaise and chronic fatigue are well known facts and are described in conditions known as “myopathies”. That there are several causes for myopathy and that they can be acquired (vitamin D or B1 deficiency, toxic substances impacting the mitochondria, vaccines and so on) or inherited. It was also interesting to find out that while doctors manifestly despise and disbelieve CFS/ME symptoms, they are not utterly unknown and unheard of or the product of “sick” minds.

When I read this paper, although old and maybe not completely accurate in the diagnostics, I understood everything about my health issues.

I remembered my mother telling me that my pediatrician said he suspected muscular dystrophy when I was one years old, because I could not gain weight. I weighed only 7 kg at the age of one year, but he wasn’t convinced and so no tests were done in communist Romania. In addition to being overly thin, throughout my childhood, I always had this “limit” that I couldn’t go past when walking uphill or if I ran up a few flights of stairs, no matter how fit and in shape I was. Otherwise, I would develop muscle weakness such that my muscles felt like jelly. I would become completely out of breath, which I now know is air hunger. I couldn’t climb slightly steeper slopes without stopping 2/3 of the way up. My heart would beat very hard and very fast. I would feel like I was out of air and collapse. I first experienced this at the age of 5-6 and these symptoms have been the main feature of my physical distress since.

Because of these symptoms, I have led a predominantly sedentary lifestyle with occasional physical activity, never daily, apart from sitting in a chair at school. I didn’t play with classmates for more than 5 minutes. I couldn’t participate in physical education classes. Any prolonged daily physical activity led to general weakness, muscle cramps, prolonged muscle “fever”, and so I avoided them.

Now, I know why. Since reading this article, I was able to present my entire medical history to a neurologist and my symptoms were instantly recognized as those of an inherited mitochondrial or metabolic myopathy. I am currently waiting for the results of the genetic tests ordered by the neurologist, which will make it possible to get the right types of treatments when in a medical setting.

Before Thiamine: A Long History of Unexplained Health Issues

In addition to the problems with gaining weight and inability to be active, I had enuresis until 9 years old, along with frequent dental infections, and otitis. I had pain in my throat every winter, all winter and low blood pressure all the time. At 14 years of age, I weighed about 43-45 kg. I remained at that weight until age 27. I had a skeletal appearance. I also had, and continue to have, very flexible joints. For example, my right thumb is stuck at 90 degrees, which I have to press in the middle to release. I can feel the bone repositioning and going into the joint. This happens at least once a week.

My diet was ovo-lacto-vegetarian diet, with 70% of the calories coming from carbohydrates from when I was able to eat until 2015. In 2015, I could no longer process carbohydrate due to severe thiamine deficiency.

Since the age of 18, I have had quasi-constant back pain in the thoracic area. I have stretch marks on thighs, but have had no sudden weight gain/loss. Among the various diagnoses I had received before the age of 18 years old:

Idiopathic scoliosis – age 18. No treatment.
Iron deficiency anemia – at 18. Treatment with iron-containing supplements. No result.
Frequent treatments for infections (antibiotics)
Fasting hypoglycemia (until 2015).

The Fibromyalgia Pit

In 2008, my “fibromyalgia” symptoms began, although looking back at my history, many of these symptoms were there all along. I made a big change in my physical activity levels and this began my 12 year decline in health. In 2008, I started my philosophy studies at the university and decided to get more “in shape” by walking daily to and from the university. A total of 6 km per day.

Constant fatigue, no energy.
Worsened back pain.
Weak leg muscles at the end of the day.
Frequent nightmares from which I could never wake up. I felt like I couldn’t find my way out of sleep. After waking up, I would sit down and after 10 minutes I found that my head had fallen on my chest and I had fallen asleep involuntarily, suddenly.
Sensations of waves of vibrations passing through me from head to toe, followed by the sensation of violent “coming out” of the body and out-of-body experiences.
Heightened menstrual symptoms.
Fairly frequent headaches.

Over the summer, I recovered completely as I resumed my predominantly sedentary lifestyle. Then, in the fall, I began walking to and from university again, and my symptoms just got worse. This cycle continued for the next few years. My symptom list expanded to include:

Migrating joint pains.
Frequent knee tendinitis.
Pain in the heels.
Generalized pain, muscles, joints, bones.
Frequent headaches.
Sleep disturbance with insomnia beginning at 2-3am every night.
Frequent thirst, increased water intake (3-4 l/day).
Frequent urination, especially at night (woken 2-3 times).
Bumping my hands on doors/door frames.
Unstable ankles.
Painful “dry” rubbing sensation in hip/femur joint.
Prolonged angry spells.
Memory problems (gaps).
Difficulty learning new languages.

I underwent a number of tests including, blood tests, X-ray + MRI of the spine, and a neurological consultation. All that came back was high cholesterol (180 LDL, 60 HDL), low calcium, iron deficiency anemia, scoliosis, and hypoglycemia. No treatment was offered.

From February 2010-August 2010 I had a scholarship in Portugal. Philology studies interrupted. I was using public transport to go to classes, which were about only 3 hours a day. I required bed rest outside classes with only the occasional walk. I had a complete remission of all symptoms in July 2010 when I returned home and resumed my sedentary lifestyle. This was the last complete remission.

From August 2010 – December 2010, I resumed day courses at both universities and resumed the walking.

All of my symptoms were aggravated enough that by December I was bedridden. I stopped attending classes due to back pain in sitting position. I wrote two dissertations lying in bed. Once again, I sought medical advice and had a number of tests and consultations with specialists. I was diagnosed with peripheral polyneuropathy and “stress intolerance”, fibromyalgia. The treatment offered included:

Medical gymnastics: aerobics, yoga and meditation presumably to get me in shape and calm me down.
Calcium and iron supplementation, gabapentin, and low-dose mirtazapine.

The physical activity worsened symptoms, as it always does. The mirtazapine improved my sleep. I took it for 2 weeks and then stopped because I was gaining weight extremely fast.

From 2011 – October 2012, I was almost completely bedridden. I had to take a year off because I couldn’t learn anything, my head hurt if I tried. The physical symptoms improved after about a year, as did the deep and total fatigue. I tried to get my driver’s license in 2012, but failed. I couldn’t remember the maneuvers and the order in which to perform them. I couldn’t concentrate consistently on what was happening on the road. There was too much information to process very quickly.

From 2012-2015, I was getting my master’s in France. This aggravated all of my symptoms of exertion, both physical and intellectual. In 2013, I underwent general anesthesia for a laparoscopic surgery due to endometriosis, after which something changed in my body and I never fully recovered to previous levels of health. I took another year break between the two years of master’s studies. I couldn’t learn anymore. Symptoms relieved a bit by this break. After three months in Thailand for a mandatory internship, in one of the most polluted cities in the world, I got sick and developed persistent headache, with very severe cognitive difficulties. At this point, 90% of my time was spent in bed.

A general anesthetic in the autumn of 2015 for a nose tumor biopsy was the “coup de grâce”. Since then, I only partially recovered a few hours after a fluid infusion in the emergency ward and a magnesium infusion during a hospital stay in Charites Berlin in 2016. Other improvements: daily infusions of 1-2 hours with vitamins or ceftriaxone.

How I Feel Since Discovering Thiamine

In order to recover from the crash I experienced in February, I increased my B1 (TTFD) intake mid-March and made sure I was eating carbs every three hours, including during the night. I need about 70% of my total caloric intake to come from carbs.

I am currently taking 1200 mg B1 as TTFD, divided in 4 doses, 600-1200 mg magnesium, 500 mg B2/riboflavin, 3 capsules of an active, methylated B vitamin complex, 80-200 mg Nicotinamide 3X per day and 1-2 capsules of a multi-mineral and a multi-vitamin. I make sure I eat enough proteins, especially from pork meat, because it contains high amounts of BCAAs and helps me rebuild muscles.

I walked again the last week of April 2021, 500m in one day, because of a doctor’s appointment. I did not experience a crash that day or the following days. I did not have to spend weeks recovering from very light physical activity.

I can now use my eye muscles again, and read or talk with people online. I can cook one hour every day without worsening my condition.

After 5 years of constant insomnia, only slightly and temporarily alleviated by supplements, I can finally sleep 7.5 hours every night again. I no longer wake up 4-5 times a night.

My wounds are healing and my skin is no longer extremely dry and cracked.

My endometriosis, SIBO-C, gastroparesis, food intolerances, “fibromyalgia” pain, muscle pain due to hypermobility, are all gone.

And to think that all of this was possible because of vitamin B1 or thiamine, in the form of TTFD and that I almost didn’t buy it, because I no longer believed in that ONE supplement that would help me!

I will always be grateful for the work Dr. Derrick Lonsdale, MD, researcher Chandler Marrs, PhD and Elliot Overton, Dip CNM CFMP, have done so far in understanding, treating and educating others about chronic illnesses. More than anything, more than any physical improvement I experienced so far thanks to their work, what I gained was truth. Truth about a missing link, multiple diseases being present at one time and about why I have been sick my entire life.

Physical Symptoms and Diagnoses Prior to Taking Thiamine

Fibromyalgia and polyneuropathy diagnostic and mild, intermittent IBS-C since 2010;
Endometriosis symptoms aggravating every year, two surgeries, stage 4 endometriosis in 2020;
Surgeries under general anesthesia severely worsened my illness and set my energy levels even lower than they were before;
CFS/ME symptoms, hyperglycemia/pre-diabetes, constant 2-3 hours of insomnia per night and constant 24/7 headache since 2015, following an infection and during my stay in a very hot climate;
POTS, Dysautonomia, Post Exertional Malaise Symptoms from minor activities, starting with 2016;
Increased food intolerances (gluten, dairy, sugar/sweets, histamine, FODMAPs, oxalates, Sulphur-rich foods), to the point of eating only 6 foods since 2018;
Chronic Lyme disease diagnostic based on positive ELISA and WB test for IgM, three months in a row, in 2017;
Weight gain and inability to lose weight after heavy antibiotic treatment, skin dryness, cracking, wounds not healing even for 1.5 years, intolerance to B vitamins and hormonal preparations, since 2017;
Complicated migraine symptoms and aura, light intolerance, SIBO-C and IBS-D, slow intestinal transit, following a 4 month period of intermittent fasting that made me lose 14 kg, living in bed with a sleep mask on my eyes 24/7, severe muscle weakness, since 2018;
Two weeks recovery time after taking a 10 minute shower;
Gastroparesis, living on an elemental diet, in 2020;
All my symptoms worsened monthly, before and during my period.

Treatments Tried Prior to Thiamine

Gluten, dairy, sugar/sweets, FODMAPs, histamine, oxalate, Sulphur-rich foods/supplements free diets; AIP, SCD, Wahl’s protocol, candida diets; high dose I.V. vitamins and antibiotics, oral vitamins and antibiotics, liver supplements and herbs, natural antibiotics (S. Buhner’s protocol), MTHFR supplements, alkalizing diet, essential oils, MCAS/MCAD treatment, SIBO/dysbiosis diets and protocols, insomnia supplements, and any other combination of supplements touted as helpful for such symptoms.

And this is just what I remember top of my head. Their effect was, at best: preventing further deterioration of my body, but healing was not present.

Additional Literature

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Image by Gordon Johnson from Pixabay.

This case story was published originally on May 11, 2021.

Genetic Thiamine Deficiency Ravaged My Family

by Teena Booth

Published on May 26, 2022

5095 views

My Father’s Decline

In 2015, my 72-year-old Dad, a daredevil who raced motorcycles and piloted planes he built himself, started losing the ability to walk. His legs would give out from under him without warning. He thought it was a back injury compressing nerves, and he spent months going to the chiropractor hoping adjustments would fix him. But his legs only continued to grow weaker, eventually becoming so numb he couldn’t feel them. Within a year, he was stuck on the couch, barely able to drag himself to the bathroom. Numerous doctor visits provided no answers. He was eventually accused of “drug-seeking” and refused to let us take him to any more doctors. He continued to deteriorate, his legs swelling up like balloons. He became incontinent, and couldn’t stop peeing on himself. He required constant visits by me and my sisters to clean him up and put food within his reach. It was clear he was dying without any medical diagnosis or even real curiosity from his doctors. I eventually moved him in with me, but his disability overwhelmed me. He couldn’t even roll over on his own because his arms were now weak and numb, too. I had my husband help me load him into the car and take him to the emergency room.

Once there, doctors told me my father’s bladder was unable to void on its own (neurogenic bladder), and urine had been backing up into his kidneys for who knew how long. He now had a severe kidney infection, as well as a septic blood infection. He likely would have died within a matter of days, the doctor said. They put a catheter in him and gave him IV antibiotics. He now had permanently damaged kidneys and a new diagnosis of congestive heart failure, with his heart working at only 30 percent of normal. They put a pacemaker in him to keep his heart going. But, despite all manner of tests, none of the doctors could figure out why his bladder could no longer empty, nor why his legs had stopped working. On his sixth day there, a team of neurologists gathered at the foot of his bed and hesitantly suggested that the cause could be some spinal stenosis they could detect in his neck. “It would be an unusual presentation for injury there to impact his legs more than his arms, but perhaps it’s worth trying surgery to correct it.” My father asked if it would help him regain the ability to walk; he dearly wanted to be able to fly his plane again. They said they couldn’t predict, the body was mysterious, who knew what the outcome would be?

My father went through neck surgery to repair the stenosis, followed by weeks in a rehab center. Then I brought him home. For the next eight months, he stabilized to a degree, and slowly regained upper body function. Still, because of his ankle drop and emaciated muscles, he could not walk without a walker and custom-built braces. Nor did he regain the ability to pee on his own; he now had to catheter himself five times a day to void his urine. I remained unconvinced that relatively minor spinal stenosis of the neck had caused him such physical wreckage.

Two Sisters With the Same Deficiency

In the meantime, we learned my youngest sister had been diagnosed with dementia, although the neurologist said he couldn’t pinpoint what “type.” She was only 51 years old. It was upsetting and scary to me, because for a long while I had been dealing with strange mental symptoms of my own. For years, I had been experiencing plenty of tingling and numbness in my legs, but that felt a minor nuisance compared to what I called “episodes” where my mind seemed to not be perceiving things right. Everything around me felt unreal. These episodes were increasing, yet I’d been so distracted by my father’s medical drama that I didn’t pay much attention. Then, not long after I got my Dad moved to an assisted living facility, I woke up feeling as if I was trapped in some kind of drugged state, like an LSD trip gone wrong, accompanied by heart-pounding panic attacks that seemed never to end. My husband took me to the ER. They said my blood work was all fine, told me I likely had an anxiety disorder and sent me home with a prescription for anxiety medication. Over the next few months, the feeling of unreality never went away. I felt like I existed in some kind of bubble, with a thick glass wall between me and the world, with the constant anxious question of “Is this real?” I was also starting to walk strangely, staggering unexpectedly. I was going numb from the knees down, and my arms were suddenly numb from the elbows down to my fingers. I had to hold on to the wall in the shower so I wouldn’t fall over. It was terrifying to feel so unsafe in my own mind and body, and several times I thought of ending my own life.

Three months into this agonizing state, it became worse, my mind went completely sideways; everything swam around me, and I felt I couldn’t form words. I was sure I’d experienced a stroke. Another trip to the ER. While there, I confessed I was a frequent alcohol drinker, so the doctor ordered a CT scan, looking for Wernicke’s Encephalopathy, he said. But my brain looked fine on the scan. Doctor visit after doctor visit, test after test, I got no answers beyond a case of hyperthyroidism that responded quickly to medication, but the resolution of which gave me no relief from my symptoms.

Discovering Thiamine and Another Sister Develops Symptoms

Of course, I was on the Internet constantly, trying to find a reason for what was happening to me. After my second ER visit, I typed in the word “Wernicke’s” into a search engine, alongside the list of my symptoms, and found an article by Dr. Derrick Lonsdale on the Hormones Matter site, an article which talked about thiamine deficiency, Wernicke’s and modern-day beriberi. My heart raced as I read such a close description of my symptoms. I quickly read through his book co-written with Chandler Marrs on thiamine deficiency, and immediately started swallowing thiamine pills. But as predicted by Dr. Lonsdale, I experienced the vitamin “paradox” of worsening symptoms and had to step back, divide up pills, and increase the dosage very slowly.

I also ordered another book Dr. Lonsdale mentioned, published in 1965, about beriberi in early 20^th century Japan. Inside were many photos of beriberi victims, one Japanese soldier’s photo captioned with “the emaciation and characteristic ankle drop of beriberi.” I was stunned to see the soldier’s legs looked exactly like my father’s. I also found descriptions of sufferers being unable to urinate, a problem I’d never found on Internet lists of thiamine deficiency symptoms. The book also talked about “wet beriberi,” which damages the heart, just as my father’s heart was now damaged. Finally, an answer! There was no doubt in my mind that my dad had somehow developed beriberi.

I started giving extra thiamine to him as well, although he’d been taking some in the B-complex his doctor had prescribed to him in the hospital for anemia. (Could the extra thiamine in that daily pill have been the reason he was able to stabilize after his neck surgery?) At his next doctor visit, I took the photos of my dad alongside beriberi victims and asked if this could be what happened to him. She said, “Hm, interesting,” and ordered a lab test to determine his thiamine levels. I warned her I had been giving him thiamine for weeks, so the test would likely come out normal. Which of course, it did, and she thus dismissed the idea he might have had beriberi. I couldn’t understand why, after seeing those striking photos, she wasn’t curious to investigate more.

Meanwhile, I took my sister with dementia, who had been complaining of numbness in her hands and arms for months, to a lab to get her thiamine levels checked, too. The results came back normal. But I handed her a bottle of benfotiamine anyway and asked her to start taking it. She said she would but later confessed she threw the bottle in the trash. “I don’t like taking pills,” she said. I wished she would, but I didn’t press. After all, my halting efforts at taking more thiamine hadn’t led to any kind of big improvement for me. I was still struggling along in a bubble of unreality and numbness. I eventually took seriously Dr. Lonsdale’s advice to go beyond vitamin pills and get B-1 injections. I found a naturopathic doctor willing to give me daily thiamine shots for two weeks. Again, I felt no dramatic difference, which made me doubt that I had a thiamine issue after all. But I suppose it did seem some of the numbness in my legs was improving. I could at least stand on my own in the shower again. So, I kept taking daily benfotiamine and getting the occasional B-complex shot with thiamine in it.

Slowly, over the next two years, I noticed my mental state improving and the numbness in my limbs finally resolving. And my father, having gone through several bottles of benfotiamine, started getting some sensation back in his legs. But he believed his doctor that it could not be beriberi that took him down, and he waved away more extra thiamine, although he was still getting it from his daily B-complex. Eventually, another sister came to visit and told me how scared she was because her legs had started going numb. I gave her all the thiamine I had and begged her to take it, and a few months later she called me, grateful the numbness has gone away. She now takes benfotiamine every day.

Tragically, my sister with dementia went into a memory care home where she would only eat the junk food and sugary carbohydrates served to her, a diet which I now understand depletes thiamine very quickly. As she was not allowed to swallow any pill not prescribed by a doctor, and her blood levels of thiamine had been measured as “normal,” she was not prescribed thiamine. She declined rapidly, and soon started asking me the same question I had so often asked myself, “Is this real?” Like our father, she stopped being able to walk or otherwise control her limbs. Also, like our father, she stopped being able to urinate on her own and had to be catheterized. This past January, she died a truly horrific death from what the doctor called “complications of dementia.” She was 53 years old.

A Probable Genetic Cause

I am now convinced that there is an inheritable problem with thiamine transport in my family and that we require much higher levels of thiamine than the rest of the population to function normally. I cannot prove it without the help of doctors who will take seriously such a possibility, and even if I could find such doctors, how could they prove it? What tests would tell us that? Even after all that me and my father and siblings have been through, my certainty can waver. After all, it took many months of persistent thiamine intake for me to return to anything close to normal, so how do I know I wouldn’t have improved without it? I can’t know for sure. But, I have found that if I get distracted by life and neglect taking thiamine for several weeks, my hands start to go numb again, and my primary mental symptom of unreality starts to creep back. I also notice that if I take thiamine with strict regularity, I feel so much better.

Today, I am haunted by the possibility that many others might have a similar genetic problem in handling thiamine, and could be going through similar desperate declines as my family experienced, without ever knowing that a simple vitamin pill could resolve it. All because of a calamitous blind spot in the medical system. Imagine all the human misery that could be avoided, not to mention medical costs saved, if more doctors would consider the possibility that beriberi can still strike. I will be forever grateful for the tireless work of Dr. Lonsdale and the Hormones Matter site; I believe the information I learned there literally saved my life. I hope my story helps others in the same boat to see themselves and be able to save themselves as well.

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Beriberi: The Great Imitator

by Derrick Lonsdale MD, FACN, CNS

Published on April 12, 2022

33001 views

Because of some unusual clinical experiences as a pediatrician, I have published a number of articles in the medical press on thiamine, also known as vitamin B1. Deficiency of this vitamin is the primary cause of the disease called beriberi. It took many years before the simple explanation for this incredibly complex disease became known. A group of scientists from Japan called the “Vitamin B research committee of Japan” wrote and published the Review of Japanese Literature on Beriberi and Thiamine, in 1965. It was translated into English subsequently to pass the information about beriberi to people in the West who were considered to be ignorant of this disease. A book published in 1965 on a medical subject that few recall may be regarded in the modern world as being out of date and of historical interest only, however, it has been said that “Those who do not learn history are doomed to repeat it”. And repeat it, we are.

Beriberi is one of the nutritional diseases that is regarded as being conquered. It is rarely considered as a cause of disease in any well-developed country, including America. In what follows, are extractions from this book that are pertinent to many of today’s chronic health issues. It appears that thiamine deficiency is making a comeback but it is rarely considered as a possibility.

The History of Beriberi and Thiamine Deficiency

Beriberi has existed in Japan from antiquity and records can be found in documents as early as 808. Between 1603 and 1867, city inhabitants began to eat white rice (polished by a mill). The act of taking the rice to a mill reflected an improved affluence since white rice looked better on the table and people were demonstrating that they could afford the mill. Now we know that thiamine and the other B vitamins are found in the cusp around the rice grain. The grain consists of starch that is metabolized as glucose and the vitamins essential to the process are in the cusp. The number of cases of beriberi in Japan reached its peak in the 1920s, after which the declining incidence was remarkable. This is when the true cause of the disease was found. Epidemics of the disease broke out in the summer months, an important point to be noted later in this article.

Early Thiamine Research

Before I go on, I want to mention an extremely important experiment that was carried out in 1936. Sir Rudolf Peters showed that there was no difference in the metabolic responses of thiamine deficient pigeon brain cells, compared with cells that were thiamine sufficient, until glucose (sugar) was added. Peters called the failure of the thiamine deficient cells to respond to the input of glucose the catatorulin effect. The reason I mention this historical experiment is because we now know that the clinical effects of thiamine deficiency can be precipitated by ingesting sugar, although these effects are insidious, usually relatively minor in character and can remain on and off for months. The symptoms, as recorded in experimental thiamine deficiency in human subjects, are often diagnosed as psychosomatic. Treated purely symptomatically and the underlying dietary cause neglected, the clinical course gives rise to much more serious symptoms that are then diagnosed as various types of chronic brain disease.

Thiamine Deficiency Related Mortality. The mortality in beriberi is extremely low. In Japan the total number of deaths decreased from 26,797 in 1923 to only 447 in 1959 after the discovery of its true cause.
Thiamine Deficiency Related Morbidity. This is another story. It describes the number of people living and suffering with the disease. In spite of the newly acquired knowledge concerning its cause, during August and September 1951, of 375 patients attending a clinic in Tokyo, 29% had at least two of the major beriberi signs. The importance of the summer months will be mentioned later.

Are the Clinical Effects Relevant Today?

The book records a thiamine deficiency experiment in four healthy male adults. Note that this was an experiment, not a natural occurrence of beriberi. The two are different in detail. Deficiency of the other B vitamins is involved in beriberi but thiamine deficiency dominates the picture. In the second week of the experiment, the subjects described general malaise, and a “heavy feeling” in the legs. In the third week of the experiment they complained of palpitations of the heart. Examination revealed either a slow or fast heart rate, a high systolic and low diastolic blood pressure, and an increase in some of the white blood cells. In the fourth week there was a decrease in appetite, nausea, vomiting and weight loss. Symptoms were rapidly abolished with restoration of thiamine. These are common symptoms that confront the modern physician. It is most probable that they would be diagnosed as a simple infection such as a virus and of course, they could be.

Subjective Symptoms of Naturally Occurring Beriberi

The early symptoms include general malaise, loss of strength in knee joints, “pins and needles” in arms and legs, palpitation of the heart, a sense of tightness in the chest and a “full” feeling in the upper abdomen. These are complaints heard by doctors today and are often referred to as psychosomatic, particularly when the laboratory tests are normal. Nausea and vomiting are invariably ascribed to other causes.

General Objective Symptoms of Beriberi

The mental state is not affected in the early stages of beriberi. The patient may look relatively well. The disease in Japan was more likely in a robust manual laborer. Some edema or swelling of the tissues is present also in the early stages but may be only slight and found only on the shin. Tenderness in the calf muscles may be elicited by gripping the calf muscle, but such a test is probably unlikely in a modern clinic.

In later stages, fluid is found in the pleural cavity, surrounding the heart in the pericardium and in the abdomen. Fluid in body cavities is usually ascribed to other “more modern” causes and beriberi is not likely to be considered. There may be low grade fever, usually giving rise to a search for an infection. We are all aware that such symptoms come from other causes, but a diet history might suggest that beriberi is a possibility in the differential diagnosis.

Beriberi and the Cardiovascular System

In the early stages of beriberi the patient will have palpitations of the heart on physical or mental exertion. In later stages, palpitations and breathlessness will occur even at rest. X-ray examination shows the heart to be enlarged and changes in the electrocardiogram are those seen with other heart diseases. Findings like this in the modern world would almost certainly be diagnosed as “viral myocardiopathy”.

Beriberi and the Nervous System

Polyneuritis and paralysis of nerves to the arms and legs occur in the early stages of beriberi and there are major changes in sensation including touch, pain and temperature perception. Loss of sensation in the index finger and thumb dominates the sensory loss and may easily be mistaken for carpal tunnel syndrome. “Pins and needles”, numbness or a burning sensation in the legs and toes may be experienced.

In the modern world, this would be studied by a test known as electromyography and probably attributed to other causes. A 39 year old woman is described in the book. She had lassitude (severe fatigue) and had difficulty in walking because of dizziness and shaking, common symptoms seen today by neurologists.

Beriberi and the Autonomic Nervous System

We have two nervous systems. One is called voluntary and is directed by the thinking brain that enables willpower. The autonomic system is controlled by the non-thinking lower part of the brain and is automatic. This part of the brain is peculiarly sensitive to thiamine deficiency, so dysautonomia (dys meaning abnormal and autonomia referring to the autonomic system) is the major presentation of beriberi in its early stages, interfering with our ability for continuous adaptation to the environment. Since it is automatic, body functions are normally carried out without our having to think about them.

There are two branches to the system: one is called sympathetic and the other one is called parasympathetic. The sympathetic branch is triggered by any form of physical or mental stress and prepares us for action to manage response to the stress. Sensing danger, this system activates the fight-or-flight reflex. The parasympathetic branch organizes the functions of the body at rest. As one branch is activated, the other is withdrawn, representing the Yin and Yang (extreme opposites) of adaptation.

Beriberi is characterized in its early stages by dysautonomia, appearing as postural orthostatic tachycardia syndrome (POTS). This well documented modern disease cannot be distinguished from beriberi except by appropriate laboratory testing for thiamine deficiency. Blood thiamine levels are usually normal in the mild to moderate deficiency state.

Examples of Dysfunction in Beriberi

The calf muscle often cramps with physical exercise. There is loss of the deep tendon reflexes in the legs. There is diminished visual acuity. Part of the eye is known as the papilla and pallor occurs in its lateral half. If this is detected by an eye doctor and the patient has neurological symptoms, a diagnosis of multiple sclerosis would certainly be entertained.

Optic neuritis is common in beriberi. Loss of sensation is greater on the front of the body, follows no specific nerve distribution and is indistinct, suggestive of “neurosis” in the modern world.

Foot and wrist drop, loss of sensation to vibration (commonly tested with a tuning fork) and stumbling on walking are all examples of symptoms that would be most likely ascribed to other causes.

Breathlessness with or without exertion would probably be ascribed to congestive heart failure of unknown cause or perhaps associated with high blood pressure, even though they might have a common cause that goes unrecognized.

The symptoms of this disease can be precipitated for the first time when some form of stress is applied to the body. This can be a simple infection such as a cold, a mild head injury, exposure to sunlight or even an inoculation, important points to consider when unexpected complications arise after a mild incident of this nature. Note the reference to sunlight and the outbreaks of beriberi in the summer months. We now know that ultraviolet light is stressful to the human body. Exposure to sunlight, even though it provides us with vitamin D as part of its beneficence, is for the fit individual. Tanning of the skin is a natural defense mechanism that exhibits the state of health.

Is Thiamine Deficiency Common in America?

My direct answer to this question is that it is indeed extremely common. There is good reason for it because sugar ingestion is so extreme and ubiquitous within the population as a whole. It is the reason that I mentioned the experiment of Rudolph Peters. Ingestion of sugar is causing widespread beriberi, masking as psychosomatic disease and dysautonomia. The symptoms and physical findings vary according to the stage of the disease. For example, a low or a high acid in the stomach can occur at different times as the effects of the disease advance. Both are associated with gastroesophageal reflux and heartburn, suggesting that the acid content is only part of the picture.
A low blood sugar can cause the symptoms of hypoglycemia, a relatively common condition. A high blood sugar can be mistaken for diabetes, both seen in varying stages of the disease.

It is extremely easy to detect thiamine deficiency by doing a test on red blood cells. Unfortunately this test is either incomplete or not performed at all by any laboratory known to me.

The lower part of the human brain that controls the autonomic nervous system is exquisitely sensitive to thiamine deficiency. It produces the same effect as a mild deprivation of oxygen. Because this is dangerous and life-threatening, the control mechanisms become much more reactive, often firing the fight-or-flight reflex that in the modern world is diagnosed as panic attacks. Oxidative stress (a deficiency or an excess of oxygen affecting cells, particularly those of the lower brain) is occurring in children and adults. It is responsible for many common conditions, including jaundice in the newborn, sudden infancy death, recurrent ear infections, tonsillitis, sinusitis, asthma, attention deficit disorder (ADD), hyperactivity, and even autism. Each of these conditions has been reported in the medical literature as related to oxidative stress. So many different diseases occurring from the same common cause is offensive to the present medical model. This model regards each of these phenomena as a separate disease entity with a specific cause for each.

Without the correct balance of glucose, oxygen and thiamine, the mitochondria (the engines of the cell) that are responsible for producing the energy of cellular function, cannot realize their potential. Because the lower brain computes our adaptation, it can be said that people with this kind of dysautonomia are maladapted to the environment. For example they cannot adjust to outside temperature, shivering and going blue when it is hot and sweating when it is cold.

So, yes, beriberi and thiamine deficiency have re-emerged. And yes, we have forgotten history and appear doomed to repeat it. When supplemental thiamine and magnesium can be so therapeutic, it is high time that the situation should be addressed more clearly by the medical profession.

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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 November 4, 2015.

An Open Letter Regarding Thiamine and COVID

by Robert Olney

Published on March 31, 2021

6747 views

Prior to the US election, in October of 2020, I found that the Biden campaign was interested in emailing me. I decided to try and get this letter setting out my concerns about COVID to Mr. Biden. I have no idea if he saw it or not. It is being published here as an open letter to whomever might consider implementing thiamine therapy in the prevention and treatment of COVID and other disease processes. It has been edited to fit the format of the website.

Dear Mr. Biden,

Greetings from Canberra Australia. I am writing to you because I believe I have something important to say about the pandemic, but find myself in somewhat of a dilemma. It may sound hard to believe but I think you may be the only person who can help.

I want to begin by telling you about Dr. Derrick Lonsdale. He is 96 years old, born in 1924. He began his medical career in England in 1948 and after emigrating to the U.S. spent 20 years practicing as a pediatrician at the Cleveland Clinic, which you visited recently. After leaving there he practiced privately, retiring at the age of 88 in 2013. He has written over 100 published papers. To this day he writes articles and helps people with their health problems through a website called Hormones Matter run by his colleague Dr. Chandler Marrs.

As a result of his experiences at Cleveland Clinic, Dr. Lonsdale became particularly interested in the subject of thiamine deficiency. As you may know, in the same way that vitamin C deficiency is linked to the disease scurvy and vitamin D deficiency is associated with rickets, thiamine, or vitamin B1, deficiency is responsible for the wasting disease beriberi. The common understanding is that this is a disease of the past and of a third world beset by malnutrition, which has been eliminated in the West by fortifying processed food such as flour with thiamine. As such it has seemingly passed out of the collective memory of modern medicine. Dr. Lonsdale on the other hand made the biochemical study of thiamine deficiency his life’s work.

Understanding Thiamine in the Context of Mitochondria

Each of the trillions of cells that make up the body contain mitochondria – self-contained electrochemical machines which take in fuel and oxygen supplied by the blood and use them to generate an electric charge – effectively a battery. This charge is used to supply energy in a chemical form usable by the cell to allow it to function. The other end-products are water and carbon dioxide – this is respiration at the cellular level. The process involves a series of chemical reactions, each reaction requiring the presence of an enzyme specific to that reaction, provided by the mitochondrion. Each enzyme also requires one or more cofactors to be present for the associated reaction to proceed efficiently. These enzyme cofactors are supplied via the blood and are none other than the vitamins and minerals we are all familiar with, particularly the B vitamins – thiamine, riboflavin, niacin, folic acid, B12 and others, and minerals like magnesium, zinc, copper, manganese and iron. If anything interferes with this chemical “symphony”, such as a deficiency of one or more of these cofactors, energy production will be impaired and the cell will not be able to function as it should.

Thiamine has been found to have a particularly important role to play. It acts as a cofactor in five of these enzyme moderated reactions, one of which occurs right at the beginning of the whole process, converting the supplied fuel (glucose) into a form usable in subsequent steps. In one of Dr. Lonsdale’s analogies, thiamine is like the spark plugs in an internal combustion engine (the mitochondrion), igniting the fuel/air mixture, turning the released energy into, in this case, mechanical rather than chemical energy, which is used to propel the car (the cell) forward. If the spark plugs are not working properly (if thiamine is deficient), the car will run poorly, if at all.

It is not hard to see the implications of this. At the level of a human being, thiamine deficiency results in beriberi (meaning “weakness”, or “I can’t”). The cells of the body are unable to provide the energy the body needs to function. If the deficiency is not corrected death may follow. At the cellular level, if a virus or bacterium attacks, or if certain cells start to misbehave, the body has cellular defenses to deal with the situation. But if the cells lack energy, these defenses are likely to fail and the body will be overwhelmed. Drs. Lonsdale and Marrs concern themselves with ensuring the mitochondria are in the best shape possible, identifying anything which affects their performance, such as drugs and other chemicals which might cause deficiencies, or genetic defects, and trying to correct such problems generally by means of nutrition, thus maximizing the body’s natural defenses.

This is where the trouble begins. According to Dr. Lonsdale, ever since Louis Pasteur’s discoveries about microorganisms, the paradigm under which medicine has operated is “kill the enemy”, in other words find ways to kill the bacteria and viruses and wayward cells which threaten us with disease, generally using drugs. The idea of helping to strengthen the natural defenses of the body is dismissed out of hand, on the assumption that the issue of nutrient deficiency belongs to the distant past. As the future commander-in-chief of the armed forces of the United States, if one of your military heads came to you and said that you only need offensive weapons and there is no need to worry about the state of your defensive capability, I’m sure that you would send them on their way. Yet that accurately depicts current medical practice. Dr. Lonsdale has for many years tried to persuade his colleagues that thiamine deficiency in particular is a very real problem of the present and the future, particularly in Western societies, for reasons I will go into, and that much of the disease we see is in fact due to it. For his trouble, he has been resolutely ignored, deemed irrelevant and consigned to history by all but a few. All, that is, except perhaps for the many people he has helped. As he tells it, every time he cured someone orthodox medicine had declared incurable, it was put down to “spontaneous remission”.

How I Found Thiamine

I became interested in this subject because of what happened to my elderly mother, now 90. Early in 2019 she came down with a nasty virus. Prior to that she’d had some health problems but was in pretty good shape overall. She recovered but never really got over it. Her longstanding breathing problems became worse. She started to have digestion problems and was back in hospital a few months later with pancreatitis. Back home, every morning after breakfast she had to sit for a few hours because she felt too weak to do anything. On one occasion she had an attack of vertigo, fell and couldn’t get up again. She was seeing several doctors and they were examining her and doing blood tests and trying different drugs on her but I felt they weren’t really helping her much. I resolved to try and work out what was going on. It wasn’t long before I came across Dr. Lonsdale and the subject of thiamine deficiency. What I learnt was that an event that was stressful to the body such as an infection could trigger a state of thiamine deficiency, and that the elderly were particularly vulnerable. I began to think that this was what happened to my mother.

I also had one or two health issues. In 2010, I was diagnosed with thyroid cancer and had it removed. I had occasional heart palpitation episodes, and remembered hearing that the answer for this was vitamin B1. I also have restless legs syndrome. As a result of this new interest in health, I learned about low-carb diets. Around March 2020 I started on a “healthy keto and intermittent fasting” diet and started taking thiamine regularly, along with magnesium, another essential cofactor which is needed for thiamine to work, and encouraged my mother, and my family, to take it. Purely coincidentally, this was also when the COVID crisis was ramping up.

As I learned more, I began to suspect that there was a connection between thiamine deficiency and COVID and that taking thiamine and magnesium might be protective against it. By this time the world was in lockdown, and I thought this would defeat the virus, so there was no need to say anything. By mid-August it was clear that things were spiraling out of control. Around this time, I realized that Drs. Lonsdale and Marrs were very well aware of what was happening and had done what they could to make it known to the world, but it had fallen on deaf ears. I decided I had to try and do something. Having had very little to do with social media, I started using Twitter to try and tell as many people and organizations as I could about the connection between COVID and thiamine deficiency, and have continued doing so to the present, learning more in the process. Everything I have learnt has only strengthened my conviction. Like them, I have had absolutely no response from anyone in a position to be able to do anything and as far as I can tell I have had absolutely no impact and am not going to. I don’t feel like I can just leave it, so that is why I have now turned to you.

Thiamine and Dysautonomia

In 2017, Drs. Lonsdale and Marrs published a book entitled “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition”, which more or less represents Dr. Lonsdale’s life’s work. The premise of the book is that thiamine deficiency, beriberi, affects the autonomic nervous system, leading to dysautonomia. The autonomic nervous system controls all of the functions that the body carries out automatically without conscious thought, such as breathing, cardiac function, digestion, sleeping, reacting to stimuli and so on. Basically, this system goes out of whack, resulting in all sorts of strange and seemingly unrelated symptoms particularly affecting the brain, heart, nervous system and digestion. “High calorie malnutrition”, the end result of the typical western diet, is largely responsible.

Beriberi is normally associated with just straight malnutrition or lack of food, and conjures up images of emaciated people. Using the above term Drs. Lonsdale and Marrs are making the point that a diet high in “empty” calories, especially from sugar, but low in micronutrients, predisposes one to the disease, because the available thiamine required to process the fuel is overwhelmed by the amount of fuel being supplied. In terms of the car analogy, the engine is flooded. So the obese could have beriberi. Anyone else nutritionally challenged, such as diabetics, could have it. Basically anyone, young or not, whether they look ill or not, could have it if their nutritional status is compromised. Dr. Lonsdale has for many years been trying to warn us that the Western world is primed for an epidemic of beriberi, waiting for something to come along that would trigger it.

Thiamine, COVID, and an Epidemic of Beriberi

About two weeks after I began tweeting about thiamine, I learned about COVID long-haulers for the first time. These are the people who get over the initial infection, only to find that they continue to have problems for many months afterwards. By now there are perhaps hundreds of thousands in this category. Having learned about the many and varied symptoms of dysautonomia associated with thiamine deficiency, I was stunned to realize that the symptoms of long-haulers, described in an endless succession of media reports as the bizarre and mysterious symptoms of COVID, are exactly the same as those of mild thiamine deficiency. Despite my numerous efforts to point this out, such reports continue to appear to this day. Of course when I checked back with what Dr. Marrs had been saying on Twitter, I found she was already pointing all this out months earlier.

To me the implications of this are enormous. It suggests that the world has completely misunderstood the nature of the pandemic and as a result of this wrong understanding the wrong decisions are being made. While undoubtedly highly contagious, I believe COVID is not the highly novel, pathogenic and virulent virus we are led to believe. Rather it is similar to, but somewhat more severe than, what we have experienced previously, the effect of which has been to unleash an epidemic of, not the version we know from history, but a modern-day equivalent form of beriberi, attributable to our generally poor nutritional status and any other environmental contributors to poor mitochondrial function.

As one example of the decisions being made, one could consider what has been happening in intensive care units around the world. Perhaps the most characteristic aspect of COVID is loss of pulmonary function, known as Acute Respiratory Distress Syndrome (ARDS). While I am no expert, it seems an assumption being made is that to overcome this just requires an increased supply of oxygen by means of a ventilator. Earlier I described respiration as it takes place at the cellular level. In terms of normal combustion everyone knows one needs three things: fuel, oxygen, and a source of ignition. It’s the same at the cellular level – it’s not enough to have glucose and oxygen, you need thiamine to act as the spark plug, followed by the chain of reactions that take place inside the mitochondrion. Perhaps thiamine deficiency, and therefore failure to initiate this reaction chain, rather than lack of oxygen, is what’s really going on. While I could find numerous general references to the use of thiamine in clinical care, when I looked at ICU protocols specifically for COVID promulgated by organizations such as WHO and CDC and in Australia, I did not find any reference to using thiamine.

There are other observations one can make. One of the seemingly mysterious features of the pandemic is that many people who get infected are completely asymptomatic. I interpret this as meaning these people have good nutritional status, and mitochondria that are working efficiently, and their cellular defenses are consequently able to deal with the virus. Also, people with a lower socioeconomic background seem to be more severely affected. This is understandable as they might only have access to cheaper, less nutritious food and are therefore more likely to be in a state of incipient thiamine deficiency when they encounter the virus. And of course, as Boris Johnson learned and as many doctors are starting to understand, a poor diet, despite access to plenty of food, leading to obesity, makes one vulnerable, the answer being to improve the diet, which doctor Lonsdale tells us should be a low carbohydrate, “real food” diet, which even now is not what nutrition guidelines recommend.

Consider Thiamine

This brings me to the main purpose of this letter. In the absence of, or in addition to, a vaccine, I believe that an emergency program of mass daily supplementation with thiamine and magnesium, and a longer term aim of improved diet, could help to protect the U.S. and indeed the world population, from the virus. One might put it as a policy goal of ensuring thiamine sufficiency in the general population. This could provide an alternative to the devastating human and economic consequences of the actions currently being taken or contemplated, whether lockdowns, border closures, or so-called “herd immunity” options. I imagine this would be a very large undertaking, more than just education as this would probably result in all existing supplies vanishing, but presumably much less than the expected vaccination program, given that both micronutrients are well-known, cheap and non-toxic. Of course, all this would need to be verified before taking action. If one can measure the level of intracellular thiamine sufficiency or deficiency in the body it should be straightforward to test hypotheses, e.g. that long-haulers are in a state of deficiency, that those who were asymptomatic have a good level of sufficiency, and so on. One difficulty with this is apparently that because of the lack of interest in this subject there is currently almost no laboratory where such measurements can be made.

The Stress of Illness

It was only a couple of weeks ago that I realized Dr. Lonsdale actually made this suggestion himself. In an article published on March 20, 2020 on the Hormones Matter website, entitled “What Can Selye Tell Us About COVID-19? Survival Requires Energy”, he said:

We believe that we have shown evidence that thiamine and magnesium supplementation are inherently necessary in a population in which nutrition is imperfect. … Moreover, if we consider the requisite ‘energy’ required to stave off any illness, might we also consider bolstering the nutrient stores e.g. host defense in at-risk populations, as a way to reduce the risk and severity of the illness? Doing so may help ensure the adequacy of energy in meeting the unseen enemy.

You will recall that this was right at the beginning of the period when deaths started to ramp up in the U.S. One wonders how different things might have been if he had been listened to.

The biggest challenge, however, could lie elsewhere. This pandemic has brought us to an extraordinary place. Suppose that Dr. Lonsdale is right. This gives rise to an incredible dichotomy. On one side there is 96 year old Dr. Lonsdale, who has few resources and at his age may not be in a position to advocate for himself, but who with a vast amount of experience behind him has a simple idea that explains an awful lot, including many diseases which medical orthodoxy cannot explain or treat, which therefore get labelled psychosomatic. He has a proposal which is easily testable, could easily be trialled, is simple and relatively cheap to implement, and could have enormous health and economic benefits. Without going into details, it could potentially lead to generally improved mental health, reduced levels of crime and reduced vulnerability to virtually all forms of disease, including viral threats that we have yet to encounter, with consequently greatly reduced health costs and productivity benefits for all economies. This would usher in a science based health renaissance, the likes of which has never been seen before.

On the other side is the entire medical establishment with its vast resources, having an entrenched position, which is unable to, indeed cannot afford to, so much as entertain the possibility that Dr. Lonsdale could be correct. You also have the pharmaceutical industry pouring billions into drug development and searching for a vaccine. A vaccine may well be found, which might head off this crisis of credibility. Or it may not. Or the virus may mutate regularly, rendering a vaccine next to impossible as with cold viruses. One thing to note is that, if the pandemic at its core is the result of a nutrient deficiency, then no drug or combination of drugs that does not correct the deficiency can possibly overcome it. On top of that, you have the food industry with its vested interests in keeping the world hooked on its cheaply made, highly addictive products based on sugar and processed carbohydrates, which Dr. Lonsdale tells us lies at the core of the problem. The pandemic is forcing us to face the inconvenient truth that this entire edifice may be unsustainable.

I’m sure you can appreciate why I think you may be the only person who might have a chance of getting us from where we are to where we could be. I’m sure you would have people to advise you on health matters. If Dr. Lonsdale is right, and you ask them for advice on this, it seems likely they will just dismiss the entire notion out of hand. If we are to avoid unthinkable levels of human and economic loss, you may have to shake the foundations of the medical establishment to its very core, to get it to accept that we need defense as well as offense in order to successfully do battle with the invisible enemy.

In the end, it may simply be a matter of going back to where it all began – back to Hippocrates, who, as Dr. Lonsdale likes to remind us, said “Let food be thy medicine and medicine be thy food.”

A Few Final Observations

I hope you get to meet Dr. Lonsdale. I strongly suspect the fact that he is still active at such an advanced age is not an accident. I imagine he has been taking his own advice. I would not be at all surprised to learn that he has lived most of his life without any significant disease. I would very much like to see him get the recognition he deserves before he dies.

If I’m right about thiamine deficiency leading to weakness in the response of cellular defenses, this could have an impact on the effectiveness of any vaccine that may be developed, since it has to piggyback on the existing cellular mechanisms. It may turn out that the underlying problem of thiamine deficiency has to be recognized and addressed even if a vaccine is produced.

I am very much a layman, so am not someone from whom to seek advice. If I hear that you are interested in pursuing this I will let Dr. Marrs know. She would be the best person to contact in the first instance.

Lastly, it seems to me that, if dealt with wisely, this has the potential to demolish the foundations of the incredible tower of disinformation that besets the American people and bring it crashing to the ground, perhaps ushering in a new, sorely lacking respect for science. Exactly how and when that might be brought about I have no idea. I’ll leave that up to you.

Good luck in your new adventure.

Robert Olney

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Rapidly Deteriorating Health With Thiamine Deficiency

by Therese Turner

Published on December 21, 2020

12477 views

In May 2020, I experienced my first symptoms with what I now believe to be thiamine deficiency (beriberi). I believe other nutrient deficiencies played a role as well. This was preceded by an especially difficult several months that included a marital separation and possible COVID infection. In addition, I experienced a mild head injury during this time when my son and I accidentally collided while picking up toys together. I have a history of traumatic brain injury, so am susceptible to post-concussive syndrome from mild head trauma.

It was these factors that precipitated the downward health spiral that first began in May 2020 when I was 38 years old. Prior to this time in life, I felt my health to be good. I had gone through some very challenging mental health struggles in the past, a TBI and post-concussive syndrome, as well as a few other issues related to physical health, but for the most part, I would have considered myself to be a fit, healthy, and resilient person. I consumed a paleo diet, which I thought very nutritionally dense, and I exercised regularly. However, looking back on my history suggests risks for thiamine deficiency. Here are some factors that are part of my overall health history:

Five pregnancies and nine years of breastfeeding with very little multivitamin supplementation
Former short-term fruitarian and vegan diets for purposes of detoxification
Former sporadic heavy binge drinking from age 15 to 33
Former tobacco smoker from age 15 to 33
Consumed extreme amounts of candy as a child
Overdosed on pills three times between ages 15 and 17. The third overdose involved Serzone, which has a warning for liver damage
Was prescribed antibiotics at least 75 times from age 5 to 33 for chronic UTIs and bronchitis
Prior health problems: chronic urinary tract and kidney infections as a child and young adult, chronic bronchitis as a child, candida overgrowth, digestive problems, insomnia, anxiety, depression, PTSD, and depersonalization disorder

In May, the combination of stressors, along with likely longstanding nutrient deficiencies, precipitated a rapid downward spiral leading to multiple hospitalizations, and ultimately, what I believe was severe thiamine deficiency. At its worst, I believe I was headed toward Wernicke’s encephalopathy and heart failure. Since the best physicians could offer was Ativan, antidepressants, and a presumed multiple sclerosis diagnosis (despite a lack of evidence), it was up to me to save myself, particularly because I am a parent to five children. Through extensive internet research, I learned about thiamine deficiency and began to treat myself. This is my story.

Rapidly Disintegrating Nerve Function

The first symptom I remember experiencing was a strange tingling in the center of my chest upon standing. The next symptom was flank pain. I thought perhaps I had a kidney stone and made an appointment with my primary care. During this time, I was also intensely tired in a way I’d never been before, very pale, anxious, uncharacteristically irritable, shaky, short of breath, thirsty, lost weight, and became sweaty at random times.

At the appointment with my primary care, it was decided I would get an ultrasound of my kidneys to check for kidney stones. I didn’t make it to the ultrasound appointment because that same day I stood up after a nap and experienced sudden debilitating chest pain that felt like I was having a heart attack. It started in the area of my heart and moved to my left arm and up to the left side of my neck. I called an ambulance and was taken to the emergency room. They ruled out a heart attack and proceeded with the kidney ultrasound after I shared with them the other strange symptoms I’d been experiencing. Nothing of significance was found on the ultrasound, and I was sent home.

Shortly after that incident, I started experiencing numbness in my legs at random times during the day and night, as if they’d fallen asleep. I went into the ER again after a particularly intense experience of numbness where I felt uneasy about even standing to walk. Again, nothing was found, and I was sent home. My arms began to go numb at night while in bed, in addition to my legs. I’d wake up to this numbness, and shortly thereafter I could feel the numb sensation in my head as well.

I began to experience gastroparesis, and my intestinal motility seemed frozen at times but then would go into overdrive during the night, requiring urgent bowel movements in the middle of the night, which was not normal for me. At the same time, I could feel the sudden rapid digestive motility, I could also feel the blood flow dropping from my brain. As soon as I’d have a bowel movement, the blood flow would return to my brain. These sensations were all so strange and unnerving and unlike anything I’d previously experienced in life.

Loss of Consciousness, Compromised Speech, and Vision Changes

I went to an acupuncture appointment and shared with the practitioner what was happening. She treated me for yin deficiency. That night I woke to use the bathroom, and on the way back to my bedroom, I nearly lost consciousness for the first time. It was a terrifying experience. My ability to speak was compromised, and I tried to communicate to my daughter what was happening, but my voice was in slow motion. My vision was growing tunnel-like and dark. I thought I was having a stroke. My daughter gave me my phone, and I called an ambulance and was able to very slowly articulate what was happening as I lay on the floor, wondering if I was going to die. I was taken on a stretcher to the ER, and the diagnosis from that trip was that I’d had a panic attack. I was given Ativan and sent home. I knew that a panic attack was not the correct explanation, although I was indeed in a state of panic over my current health. I felt very strange, with strange sensations throughout my body and brain, severe anxiety, erratic heartbeats, and tachycardia.

Things grew progressively worse over the next couple days, and my mother drove me to a better hospital four hours away to hopefully get answers. By the time we arrived, I could not walk due to the total body numbness. I was given a neurological exam and had no reflexes in my knees, ankles, and feet. I was then given two bags of IV saline and felt relatively normal a few hours later. Many labs were done, but no nutrient levels were checked. I was kept overnight and examined by a neurologist, but I wasn’t experiencing symptoms during the exam. It was found that my blood sugar was abnormally low during the night (65), and I was told to improve my nutrition and sent home with no real answers.

Was it B12 Deficiency?

I started taking a B complex and multivitamin and tried to eat as healthy as possible, but during the following weeks, I continued to experience near syncope, dizziness, cardiac and GI issues, strange body sensations, and severe anxiety. I’d have pockets of time where I felt relatively normal, but symptoms always returned, and night numbness was a regular occurrence. I often felt ataxic, like I was about to lose my balance or fall. My hearing seemed to change, and my right eyelid began to twitch relentlessly. Nerve pain began in my joint junctions and felt like sparking, electrical, stinging sensations. Over the course of several days, these nerve pains began to affect the base of my spine and slowly moved up my spine to my head. It was a very painful and frightening experience.

When researching symptoms, I came across information about B12 deficiency and wondered if that is what I was dealing with, so I asked my naturopath if he would prescribe methylcobalamin that I could inject at home, and I began daily B12 injections. The nerve pain resolved after a few weeks, which was a tremendous relief. As a result of this resolution, I believed a B12 deficiency to be at the root of my problems. I continued with B12 injections after the nerve pain healed but dropped down to once weekly injections.

Another Hit to My System

Shortly after the nerve pain resolved, I got very sick with a Campylobacter infection. It was strange because no one else in my family got sick, and we’d all been eating the same meals. I went to the ER after several days of relentless diarrhea and high fever. I was given fluids and my stool was tested, which revealed the Campylobacter bacteria, and I was prescribed azithromycin. In hindsight, I wish I’d not taken the antibiotic because I believe it made my condition worse.

After the antibiotic, I felt like I was in a permanent state of semi-consciousness. I felt hypoxic, like I was being asphyxiated. When I’d start to fall asleep, I’d wake up with a jolt because it felt as though I were falling and losing blood flow to my brain. I had constant high-pitched ringing in my ears. Life became a total nightmare. My arms and legs were swirling with strange sensations I’d never felt before – paresthesias and cramping muscles. My heart was in a near constant state of palpitations with alternating bradycardia and tachycardia. When I’d roll from one side to the other in bed or stand up, my heart rate would go from 40s and 50s to 120s and 130s. It felt like my heart was constantly pounding, no matter if the rate was slow or fast. The sound was audible to me day and night, and the pounding seemed to shake my entire body. Sometimes it felt like my heart would stop for an abnormally long amount of time, then sluggishly start thumping again. I would wake up in extreme pain on whichever side I slept on. I recall using my finger oximeter one night and getting a reading of 84% oxygenation.

Maybe Multiple Sclerosis?

During this time, several doctors suggested I might have Multiple Sclerosis (MS). I had an MRI of my brain that showed no lesions, so MS was ruled out. I was eventually diagnosed with POTS by the medical community. I researched POTS and saw that extra salt was often helpful for minimizing dizziness, so I started adding salt and electrolytes to my water. It did seem to help some, so I began drinking about a gallon of water a day with 2-3 extra teaspoons of Celtic or Pink Himalayan salt and added electrolytes.

In late September 2020, my POTS symptoms resolved. My heart had normalized, and I was no longer dizzy or experiencing near syncope, but I was left with “stocking and glove” peripheral neuropathy. I had numbness from my feet up to my calves and numbness in my hands and forearms. I was relieved that the POTS symptoms were gone and felt I could tolerate the numbness and paresthesias. I still felt very weak and struggled with bacterial infections in my ears and sinuses as well as cold intolerance.

Discovering Thiamine Deficiency

Life continued this way until early November, when I decided to try R-Lipoic acid for the peripheral neuropathy and occasional spinal pain and tingling that periodically occurred. This was a devastating mistake. I ingested the first capsule in the morning and second in the evening, and within an hour of the second capsule, nerves all over my body felt like they were on fire. The only thing I’d changed that day was the lipoic acid, so I started researching contraindications to lipoic acid online and found that thiamine deficiency was a contraindication. Lipoic acid and thiamine work in tandem in the Krebs cycle, so by adding one with a deficiency of the other, it creates a draw on an already almost empty tank. In one study, when thiamine deficient rats were administered alpha lipoic acid, it created a toxic reaction. Unknowingly, I’d taken a supplement that made my situation go from difficult to much worse.

I then looked up thiamine deficiency symptoms and recognized my experience immediately in beriberi disease. I found the website, Hormones Matter, run by Dr. Derrick Lonsdale and Dr. Chandler Marrs. I began reading through the information and stories, and my belief that thiamine deficiency was the root of my problems grew stronger. Dr. Lonsdale suggests using a type of thiamine called Allithiamine (thiamine tetrahydrofurfuryl disulfide), as it crosses the blood brain barrier superior to other forms of thiamine. I ordered a bottle and took a large dose of thiamine hydrochloride I had on hand before going to bed.

I didn’t sleep well that night. My nervous system felt like it had been severely damaged. I was shaking, my heart was once again beating erratically with tachycardia upon movement. The nerve pain was intense and spread throughout my entire body. The next day, I went for a short walk and nearly blacked out. The muscles in my legs were painfully cramping. I had no energy. I couldn’t even read. I went to bed that night feeling like I had a head injury.

Each day was progressively worse. I was taking thiamine hydrochloride and benfotiamine every couple of hours, but it didn’t seem to be stopping the downward spiral of symptoms. I felt like I was going to collapse. My brain was not functioning well. I was nauseous and had severe GI distress. All the symptoms I had experienced before, in addition to many new symptoms, manifested again in rapid succession. I went into the ER and attempted to explain that I believed I had a severe thiamine deficiency, hoping I would be given IV thiamine, but I was only handed a thiamine tablet, given some IV fluids and sent home.

Five days went by, and the Allithiamine arrived in the mail. By this point, I was vomiting, could barely walk, and felt like I had a traumatic brain injury. I took one 50 mg capsule and felt relief of the extreme brain injury sensations within half an hour. Encouraged, I continued to take a 50 mg capsule each time I would start to decline. The nerve pain lessened, I stopped vomiting, and my heart rate somewhat normalized, but the most profound effect of the Allithiamine was in reducing the intense brain injury sensation.

I’ve experimented with dosage and arrived at 100 mg every two waking hours being the most effective for keeping most symptoms at bay. In addition to the 100 mg of Allithiamine, I also take 150 mg benfotiamine and 50 mg magnesium glycinate every two hours, a daily high dose B complex, multivitamin, phosphatidylcholine, ubiquinol, digestive enzymes, probiotics, and fish oil. Five weeks out from taking lipoic acid, I still experience constant moderate nerve pains all over my body, problems with bacteria (eye infections, ear pain, sinus infections, sore throat), mild tachycardia upon sudden movement, pounding heart, random sweating, high fasting blood glucose (between 110 and 120), shakiness, dizziness, anxiety, weakness, and exercise and cold intolerance. The Allithiamine and benfotiamine have improved my brain function, nerve pain and paresthesias (from severe to moderate), digestion, and my ability to sleep, and I’m hopeful that with time I’ll see more improvements.

Recovering But Disillusioned With Modern Medicine

I believe the work of Dr. Chandler Marrs and Dr. Derrick Lonsdale and supplementing with Allithiamine saved my life. I believe I was headed toward Wernicke’s encephalopathy or high output heart failure before taking Allithiamine. My quality of life is currently very poor, but I have hope that recovery from beriberi and mitochondrial damage is possible. Some damage may be permanent, but I see small improvement each day, which indicates to me that more improvement is possible.

I wish so much I’d found the Hormones Matter website earlier in the course of my disease, as I’m certain things could have been more easily reversed. I hope that others might benefit from my story and avoid the horrendous decline that I experienced. Just by taking such a simple nutrient as vitamin B1, so many devastating health consequence can be avoided. Why don’t more doctors have awareness of this?

I am disillusioned with the medical community in not identifying my illness despite dozens of trips to the ER with comprehensive symptom lists in hand and visits to internists, cardiologists, and neurologists with detailed descriptions of my ailments. No one ever checked my nutrient status beyond vitamin D, iron, and zinc levels, and B12 and folate at my request. I was treated as though I had an anxiety disorder and offered anxiety medication and antidepressants.

How is it that in 2020, the only thing that comes to mind for the medical community when presented with complex neurological symptoms is MS? Time and time again, I was told I likely had MS, but my MRI clearly showed I did not. Beriberi is a well-documented condition that’s been known for hundreds of years, yet the medical community doesn’t consider it other than Wernicke’s encephalopathy in alcoholics. I hope this can change. Awareness needs to grow. I know there must be many others who have experienced similar symptoms to my own and sought help. We deserve better medical care in what is supposed to be among the most technologically advanced countries in the world. Until and unless things change, websites like Hormones Matter serve as beacons of hope. I am profoundly grateful to the work of Dr. Chandler Marrs and Dr. Derrick Lonsdale.

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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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Chronic Fatigue Syndrome

Fibromyalgia Syndrome

Regional Pain Syndrome

Sleep Apnea Syndrome

Similar Cause with Different Manifestations

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The Road to Thiamine

From the Low-Oxalate Diet to Discovering Beriberi Disease

The Astonishing Effects of Thiamine

Early Metabolic and Mitochondrial Myopathies

Before Thiamine: A Long History of Unexplained Health Issues

The Fibromyalgia Pit

How I Feel Since Discovering Thiamine

Physical Symptoms and Diagnoses Prior to Taking Thiamine

Treatments Tried Prior to Thiamine

Additional Literature

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My Father’s Decline

Two Sisters With the Same Deficiency

Discovering Thiamine and Another Sister Develops Symptoms

A Probable Genetic Cause

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The History of Beriberi and Thiamine Deficiency

Early Thiamine Research

Are the Clinical Effects Relevant Today?

Subjective Symptoms of Naturally Occurring Beriberi

General Objective Symptoms of Beriberi

Beriberi and the Cardiovascular System

Beriberi and the Nervous System

Beriberi and the Autonomic Nervous System

Examples of Dysfunction in Beriberi

Is Thiamine Deficiency Common in America?

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Understanding Thiamine in the Context of Mitochondria

How I Found Thiamine

Thiamine and Dysautonomia

Thiamine, COVID, and an Epidemic of Beriberi

Consider Thiamine

The Stress of Illness

A Few Final Observations

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Rapidly Disintegrating Nerve Function

Loss of Consciousness, Compromised Speech, and Vision Changes

Was it B12 Deficiency?

Another Hit to My System

Maybe Multiple Sclerosis?

Discovering Thiamine Deficiency

Recovering But Disillusioned With Modern Medicine

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