thiamine deficiency

Sleep Requires Energy

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It is widely believed that almost no calories are used during sleep. That is incorrect: while the body rests during sleep and energy consumption is not high, it is a long way from zero. A convenient way to measure energy use is known as the “metabolic equivalent” (ME). This is defined as the rate of energy used by a person sitting and awake, the “resting metabolic rate”.  A person riding a bicycle may be using five MEs; a runner, nine or more. A sleeping person uses about 0.9 MEs, so we burn calories when we are asleep about 90% as fast as while sitting on the couch watching television.

Energy conservation is important in sleep, but it’s expenditure is still required. It has been proposed that sleep is a physiological adaptation to conserve energy but little research has examined this proposed function. In one study, the effects of sleep, sleep deprivation and recovery sleep on the whole-body, total daily energy expenditure was examined in seven healthy participants aged 22+/-5 years.  The findings provided support for the hypothesis that sleep conserves energy and that sleep deprivation increases total daily energy expenditure. I read somewhere that an enthusiastic young astronomer decided that sleep was unnecessary and used his telescope for 13 nights without sleeping during the day. He became extremely ill, thus showing the importance of sleep in survival. The recognition that sleep is one of the foundations of athletic performance is vital.

Research in the general population has highlighted the importance of sleep on neurophysiology, cognitive function and mood. In a post on Hormones Matter, we reported several young people who had a post Gardasil vaccination crippling condition that turned out to be due to thiamine deficiency. All of them had been exceptional athletes and students before the vaccination. We concluded that the brain energy requirement for exceptional people put them at greater risk of succumbing to stress if their capacity for MEs was limited, either for genetic or nutritional reasons. We assumed that their thiamine deficiency before vaccination was marginal and either asymptomatic or producing trivial symptoms ascribed to other “medically more acceptable” causes.  The stress of the vaccination required an energy dependent adaptive response that precipitated fully symptomatic thiamine deficiency.  You might say that they were “weighed in the balance and found wanting” as the proverb says.

The Stages of Sleep

Sleep is a complicated process. The first sensation is known as “sleep latency” and registers the time taken from eye closure to falling asleep. The sleep cycle is then divided into five stages, each cycle lasting approximately 90-120 minutes. Stage one is known as light sleep. In stage 2 the brain is resting the parts used when awake. Stages 3 and 4 are deeply restorative. Stage V is known as rapid eye movement (REM) sleep and may be the most important part. Movement of the eyes behind closed lids is observed. The autonomic nervous system is activated for unknown reasons. It is in this stage when we dream and most sleep disorders occur.

Circadian Rhythm

The word circadian means “about 24 hours”. The circadian clock is a complex, highly specialized network in the brain that regulates its day/night metabolism and is a key for metabolic health. It is modulated by behavioral patterns, physical activity, food intake, sleep loss and sleep disorders. Disruption of this clock is associated with a variety of mental and physical illnesses and an increasing prevalence of obesity, thus illustrating that it is dependent on energy balance (production/consumption). Reduced sleep quality and duration lead to decreased glucose tolerance and insulin sensitivity, thus increasing the risk of developing type 2 diabetes. In other words there is a close link between circadian rhythm and available energy . I have seen patients who were unable to take the night shift at work because they were unable to adapt. The increase in obesity has been paralleled by a decline in sleep duration but the potential mechanisms linking energy balance and the sleep/wake cycle are not well understood. An experiment was reported in 12 healthy normal weight men. Caloric restriction significantly increased the duration of deep (stage 4) sleep, an effect that was entirely reversed upon free feeding.

Sleep Apnea

This condition is fairly common in the United States and is probably generally fairly well-known by most people. The patient stops breathing during sleep and may repeatedly awaken with a start. The disease was discovered because a woman reported that her husband kept waking up with a start because “he was affected by an evil spirit”. Fortunately, the physician took her seriously and it led to the studies that determined its cause. Many patients with, or at risk of, cardiovascular disease have sleep disordered breathing (SDB). These can be either obstructive because of intermittent collapse of the upper airway, or central because of episodic loss of respiratory drive. SDB is associated with sleep disturbance, hypoxemia, hemodynamic changes and sympathetic activation. Brainstem dysfunction combined with heart disease is the hallmark of the thiamine deficiency disease, beriberi.

What that means is that there are two types of sleep apnea. In the obstructive type, the tongue falls back into the pharynx and blocks the airway. In the one where there is loss of respiratory drive, the centers in the brain stem are compromised. It is these centers that completely take over the control of breathing when we are unconscious as in sleep. If their supervisory mechanisms fail, breathing ceases. Carbon dioxide concentration increases and stimulates the brain controls that restart breathing. Occasionally these mechanisms are so sick that breathing does not restart. Hence a form of  nocturnal sudden death follows. When we are awake we can override these centers and control our breathing voluntarily. Obesity and obstructive sleep apnea have a reciprocal relationship depending on the regulation of energy balance. When I was in practice I treated several patients with sleep apnea using large doses of thiamine. Because of this I hypothesized that the association of dysautonomia with so many different diagnoses is because of loss of oxidative efficiency and subsequent disorganization of controls that are mediated through the limbic system and brainstem. I came to the conclusion that energy deficiency in the brain was the core issue.

I recently had a letter from the parents of a then five-year-old child who came under my care 35 years ago. She has a genetically determined disorder that affects energy balance and I had treated her by dietary restriction and providing non-caloric nutrients. They informed me that she was doing very well. The condition is known as Prader Willi syndrome, a terminology that indicates that nothing was known about its cause when it was initially described. Today, 10 studies have provided evidence that total energy, resting energy,  sleep energy and activity energy expenditure are all lower in individuals with this syndrome. Dietary discipline and nutritional supplementation had paid off.

An Explanatory Analogy

You may think that comparing the human body with an automobile is manifestly absurd, but the principles that I will use in the analogy are simple.

Fuel

First of all, both use fuel: gasoline is the fuel for a car, but it must be calibrated to the design of the engine, giving rise to the gasoline choices at the pump. Although different forms of human food may be compared to gasoline choices, the primary fuel for our cells is glucose and this is particularly true for the brain. Glucose, a carbohydrate, can be synthesized in the body from other components in the diet and different diets are sometimes used therapeutically. Unlike the car, the human body must derive its “spark plug”  from the food and is the basic reason why organic, naturally occurring, food is a necessity. The food industry cannot imitate or replace it.

Engine

The engine in a car burns gasoline to create energy. It requires spark plugs to ignite the gasoline and waste gases are eliminated through an exhaust pipe.

Every cell in the human body has an “engine”. Without going into details this is known as the Krebs cycle (named after its discoverer). Its objective is to produce energy and glucose has to be “ignited” (oxidized). The oxidation process, while releasing energy, gives rise to carbon dioxide (the “ash”) that is eliminated in the breath. Energy is stored in an eletrochemical form known as adenosine triphosphate (ATP).The nearest parallel would be a battery. It releases an electrical form of energy that is then used for function. Whether we like to recognize it or not, we are electrochemical machines and the only way that we can preserve or retrieve health is by furnishing the complex of ingredients that enable food to be converted into energy.

To continue the analogy, when you put your car in the garage and turn off the ignition the car is technically “dead”. Obviously, we are unable to do that with the human body, but let us make a simple comparison. Supposing for some reason it was desirable to keep the car “alive” when it was in the garage. The engine would continue to run and it would be consuming fuel. Because the body requires energy to remain alive, the “engines” have to continue running, even when we are asleep. This does make sense for the consumption of energy when we are asleep———it keeps us alive !

Transmission

The energy developed from burning gasoline has to be transmitted to the wheels in order to produce the normal function of the car, which is the ability to move. The transmission is a series of levers that are interconnected.

The same is true in the human body, but it is biochemical in nature. A series of energy consuming enzymes use the protein, fat and carbohydrate to build the diversity of tissues that make up the body. Throughout life, cells are destroyed and replaced, so this is a continuous process of energy consumption and repair. Every physical movement, every thought and emotion, consumes energy. Like the transmission in the car, the energy produced by the citric acid cycle engine is consumed in every movement of the body, every thought occurring in the brain and every emotion.

Chassis

The body of a car is just a container on wheels designed to carry around human beings. Its sole function is to move and until we have driverless cars a human being must be the driver.

In comparison, the body of a human being is merely a chassis that carries the brain around. It might be said that the brain can be compared with the car driver and every function of the body is under the command of the brain. Another analogy that I have used is an orchestra where the brain is the conductor and the organs are banks of instruments in which the cells come under the command of the conductor.

Putting It All Together

The 2019 Nobel prize has just been awarded to three scientists who have discovered how our body cells respond to low concentrations of oxygen (hypoxia). The reaction of medical scientists is very positive since this discovery will certainly be applied to the treatment of many diseases. Apparently scientists are already trying to find drugs that will influence this effect. For example, it has long been known that hypoxia will introduce inflammation. My forecast is that the use of nutrients will often correct the genetics by epigenetic mechanisms and this is already under way.

I found the Nobel prize extremely interesting because of a little-known phenomenon that was described by the early investigators of the vitamin B1 deficiency disease, beriberi. They had found in this disease that the arterial concentration of oxygen was low while the venous concentration was relatively high. Arterial blood carries oxygen from the lung to all the tissues of the body. It has to be unloaded into the cells that then use it to produce energy. The venous blood then returns to the lung to be loaded again with oxygen. A relatively low arterial oxygen reflects an inadequate loading at the lung tissues, while a relatively high venous oxygen indicates poor utilization by the cells to which it is delivered. This means that thiamine (vitamin B1) is an essential catalyst in the delivery of oxygen to the tissues. Its deficiency induces gene expression similar to that observed in hypoxia and has been referred to as a cause of pseudo-hypoxia (false hypoxia).

The heading of this article is that sleep requires energy, but I am making the case that being alive and well simply means that oxygen is being consumed efficiently, as long as the “blueprint” of DNA is healthy. It strongly suggests that hypoxia and/or pseudo -hypoxia are the underlying causes of disease and may explain why thiamine and its derivative are such important therapeutic agents.

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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 October 14, 2019. 

Rest in peace Derrick Lonsdale, May 2024.

Energy Loss as a Cause of Disease

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I graduated from London University in 1948 and retired at the age of 88 years in 2012, so I have seen some remarkable changes in the practice of medicine. I have entered many reports on this website, detailing what should be a medical revolution. One of the best professional associations that I have ever made has been with Dr. Chandler Marrs, the editor of Hormones Matter. Both of us have tried hard for years now to explain the details of our experience, hoping to reach those many individuals who are being misdiagnosed and treated extremely badly. My recent experience has come from retiring in an excellent retirement home.

I am surrounded by people of my age, many of whom are taking numerous medications to treat their symptoms. The most recent example was in a gentleman who has been in and out of hospital several times with a set of symptoms whose origins are clearly due to cellular energy deficiency. When approaching him as a friend and asking him how he is faring, he told me that his list of symptoms remains as a medical mystery. In addition, two women, with whom I had become acquainted, had symptoms that were similar to his. One of them passed away without a diagnosis and the other one is presently being treated symptomatically. The reader might well ask the obvious question as to what happens if I should state an opinion. The answer is very simple; the offered explanation would fall on deaf ears. Unfortunately, this is eminently predictable and is the major reason why innovation that contradicts the medical standards of the day is regarded as heresy throughout history. Of course, “new” concepts must be backed by evidence to become accepted. We are trying to provide the evidence on this website for defective cellular energy as a major cause of disease.

Heresy in Medicine

I am pretty sure that I may have recorded the story of Dr. Semmelweiss on this website but it is a story so poignant that it is well worth repeating. It is a story that illustrates the difficulty of introducing innovation in medicine, or indeed anything new. Semmelweiss was a German Hungarian physician who lived before the discovery of microorganisms. He presided over an obstetrics ward in which there were perhaps 10 beds on one side of the room and 10 beds on the other. The physicians of the day would come in and deliver their patients without washing their hands or changing their clothes. It is difficult for some people to comprehend the total lack of any form of hygiene that doctors practiced before microorganisms were discovered. Semmelweiss observed that the physicians would often come into the ward directly from the morgue and concluded that they must be bringing something in on their hands that caused the patient to die from child-bed fever, as it was then called. From this observation, he organized the first controlled experiment in medicine. He directed the physicians on one side of the ward to wash their hands in chlorinated lime before they delivered the patient. The physicians operating on the other side of the ward carried on in the same old way.

The results were dramatic as we would expect today. Child-bed fever was reduced by 85% when the physicians washed their hands. The medical profession, including his colleagues, said that “because Semmelweiss could not explain what was on the hands of the physicians, his explanation was unscientific”.  It is important to note that they simply ignored the obvious benefit. He was discharged from his job and excluded from the hospital. He died as a pauper in a mental hospital.

The major point is that the concepts of the medical profession of the day were completely wrong,  He had clashed with the current medical model that was then accepted by mainstream medicine as “the truth”.  If we apply this lesson to today’s model of medicine, it is impossible not to wonder if the outstanding principle of the use of pharmaceutical drugs in medical practice is fundamentally wrong. Is treating symptoms without addressing their underlying cause scientifically justified? A glance at the Physicians’ Desk Reference that supplies information on the many prescription drugs available might put off the reader’s use of a prescription. For each drug there is a short description of its use, often with an admission that its action is only partly understood. Then follows a page or two describing its side effects. Does this not suggest that the use of pharmaceuticals to treat symptoms causes more problems than it solves? Are we approaching another Semmelweiss moment in medical history?

Envisioning an Alternative Approach

I envision the profession of medicine as like a traveler, hoping that the road leads to the best solution in the treatment of disease. For my analogy the traveler comes upon a fork in the road with a signpost. One sign says “Kill the Enemy“, (referring to the discovery of infecting microorganisms) and our traveler takes that road because the sign for the other fork is blank. “Kill the enemy” became the first paradigm (a model accepted by all) in medicine. We had to find means of killing bacteria, viruses, cancer cells or any other attacking agent and many years were spent in trying to find ways and means of doing this without killing the patient. The information was hard won and a lot of patients suffered untold hardship and even death until the discovery of penicillin. This in itself “proved that the correct fork in the road had been chosen”. As we know, this discovery led to the antibiotic era, but even these drugs are running into new problems.

To continue the analogy, our traveler goes back to the fork in the road and finds that the other sign has now been filled in. It reads “Assist the Defenses” and I believe that it should represent a new paradigm. Louis Pasteur and his colleagues discovered the disease producing microorganisms, but on his deathbed he is purported to have said “I was wrong, it is the terrain that matters”.  He meant that the terrain represented the defensive functions of the body that should be assisted.  Perhaps he formulated what I believe must be the second paradigm in medicine.

The Second Paradigm

How should we approach the introduction of this concept? It seems to me that the problem is that few people are aware of the basic principles of body function so I must provide another analogy that I have used before in Hormones Matter. The human body can be compared with a symphony orchestra in which part of the brain represents the conductor. The organs represent the banks of instrumentalists that make up the orchestra. Like the instrumentalists who, although they are experts in their own right, still have to obey the conductor, the cooperative function of all our cells must obey the automated signals from the brain to play the symphony of health. Each of us comes with a “blueprint” that is our inheritance and although we are all the same in principle, we are all uniquely different because of accidental or inherited variations in the “blueprint”. The autonomic (automatic) nervous system, controlled by the lower part of the brain, coordinates the function of organs in the body, behaving like a computer. It receives sensory information, enabling it to receive from and send signals to those organs, thus collectively playing the symphony. The endocrine system consists of a group of glands that produce hormones. Their function, also under the command of the brain, is to release the hormones that travel in the bloodstream to the organs and are thus signaling agents.

The voluntary nervous system, controlled by the upper part of the brain, gives us what we call willpower. The voluntary and autonomic systems are completely separate but have many connections, so some of the reflex activity conducted by the autonomic system can be influenced and overridden by an act of will. Perhaps the best example is the fight-or-flight reflex that is activated by a sense of danger but can be modified voluntarily. For example, the reflex response to an insult might result in violence if it is not modified by the voluntary system. Assuming that the blueprint provides all the machinery of survival, all it requires is energy.

The Production and Consumption of Energy

We cannot survive without food and water. There is, however, an overall tendency to ignore the appropriate nature of the food, in spite of the fact that it provides the fuel that gives us energy. Taste is the dominating influence, driving sales for the food industry without an appropriate consideration of calorie/micronutrient balance. It is clear that “vitamin enrichment” has hoodwinked us. Chemical energy is liberated from oxidation of fuel (food), but it must be transduced in the body to an electrical form of energy that enables us to function. The electrocardiogram and the electroencephalogram are both tools that identify the electrical nature of this function. The human body is well equipped with an enormously complex system of defense but its complexity requires energy that has to be increased when a person is under any form of physical (trauma, infection, severe weather etc) or mental (divorce, grief, business deadlines etc) stress. It is very important to think of stress as a “force” to which we have to adapt. The lower part of the brain, acting like a computer must automatically organize the complex defense machinery, including the immune system, so its energy requirement exceeds that required by the rest of the body and must be automatically increased to meet the required response to stress. What we call the “illness” (fever, swollen glands, inflammation, etc.) is evidence that the brain has gone into action to generate a defense. In fact, war is declared and the result is recovery, death, or prolonged chronicity where the attacker has not been completely defeated. A nutritionally deprived individual cannot muster the energy to initiate defensive action and may explain why stalemate or the stress of vaccination can be evidence of failure to adapt.

Of all the aspects of health maintenance, exercise, appropriate rest, socialization and fulfilling job assignment, perhaps nothing is more important than the nature of the food. Genetics, stress and nutrition are visualized as the “three circles of health“. I want to illustrate this relationship by retelling an incident that we reported in “Hormones Matter” a few years ago. The mother of an 18-year-old girl reported by email that her daughter had received the HPV vaccination (to increase immunity against the virus associated with cancer of the cervix) four years previously. Throughout the four years she had been more or less crippled by a condition known as postural orthostatic tachycardia syndrome (POTS). She had been seen by many physicians without any success. Her mother did her own research work and had come to the conclusion that her daughter had the vitamin B1 deficiency disease known as beriberi and she wished to prove it. A blood test clearly showed that she was correct. Because of this, several young people who had also suffered from POTS following the HPV vaccination were also found to be thiamine deficient. One young woman who had not received the vaccination also had POTS and was found to be thiamine deficient. One of the observations that had puzzled the parents of these young people was that, without exception, each of them had been recognized as an exceptionally good athlete and student before they had received the vaccine. We deduced from this that a superior brain was more likely to consume  more energy than someone less well endowed, thus increasing the risk of poor  nutrition and the ability to adapt to a potentially powerful stressor.

Although proof is not possible, we have accumulated a lot of evidence that has enabled us to hypothesize that the vaccination acted as a nonspecific form of stress in people who were marginally thiamine deficient, but asymptomatic before receiving the vaccine. For the youngster who had not received the vaccine, but who had succumbed to POTS, poor nutrition alone, with or without genetic risk, had to be blamed. Genetics, stress and nutrition are visualized as the “three circles of health“.

The Medical Revolution

We are proposing that energy loss is the major cause of disease and that it results commonly from a less than ideal diet or dysfunctional mitochondria. Failing in the balanced need of the caloric content and the  necessary non-caloric vitamins and minerals for efficient oxidation, the result of poor diet is energy deficiency. There is considerable evidence that thiamine plays a vital part in both the production of chemical energy (ATP) and its conversion to electrical energy for bodily function. We have concluded, also from evidence, that genes may or may not usually cause disease on their own. Either nutrition or overwhelming stress may be variable factors that create genetic risk. The prevailing addiction to sugar creates a variable degree of thiamine deficiency by the catatorulin effect. We further hypothesize that a mild to moderate thiamine deficiency leads to a gradual decay in the efficiency of the critical enzyme(s), insufficiently supported by the cofactor(s). Attributing the easily reversible symptoms to other causes and allowing them to continue, leads to chronic disease. This may or may not respond to pharmacological doses of cofactor, used to resuscitate the associated enzyme(s).

We Need Your Help

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.

Yes, I would like to support Hormones Matter.

Image by Jonny Lindner from Pixabay.

This article was first published on July 1, 2019.    

Rest in peace Derrick Lonsdale, May 2024. 

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

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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 21st, 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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This case story was published originally on May 11, 2021. 

Diet and Medication Induced Thiamine Deficiency – Dry Beriberi

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I am 41 years old and experiencing weird, scary, and upsetting symptoms that began a year and half ago. I have numbness in my feet that has moved up into my calf and super tight calves, ankles and feet. I have peripheral neuropathy, carpal tunnel symptoms, circulation issues without swelling and some sciatica like symptoms with achiness in my legs. I am exhausted all of the time, have no energy and symptoms of depression, but I am not depressed other than these health issues. I am overly irritable and always cold. My hair is falling out and I become dizzy when I standup from a sitting position.

In the past, I believe at some point I had insulin resistance but was never diagnosed. I did, however, have issues with my blood sugar. I was put on Metformin for 6 years, during which time I had a lot of stomach issues, nausea, and diarrhea. I was never a big drinker at all, nor did I use tobacco. I was under a ton of stress for many years though. Despite the stress, I was always healthy and worked out, ran on a treadmill, and was active. I worked as a nanny 55 hours a week.

My diet before metformin was not the greatest with lots of carbs and processed foods. I may have had a thiamine deficiency back then and but did not know about it. No one ever tested me for thiamine until recently. A lot of my symptoms started at a time where I was dealing with some heavy things, so I believe stress was definitely involved. For the past three years, I have not been on medication. Currently, I eat a low carb/keto diet and my A1c is 5.2 and insulin is 3.

Discovering Thiamine Deficiency

I started to experience these symptoms about a year and a half ago. I have tried many things to feel better and help with my symptoms and nothing has worked. Of the nutrient testing that I have had, my thiamine was low. It was 66nmol/L. The reference range was 78-185nmol/L. My vitamin D was barely above the deficiency range at 30ng/mL, my methylmalonic acid was on the low end of the range at 107nmol/L (range 87-318), and my vitamin B6 was high at 29.5ng/mL (range 2.1-21.7). Nothing was discussed regarding the other low vitamins and high B6. I was, however, told by my neurologist to take 100mg a day of vitamin B1/thiamine. She never indicated that this was the reason for my symptoms though.

I began doing my own research and found that I had all of the classic symptoms of dry beriberi – thiamine deficiency that affects the nerves. In other words, my symptoms were related to thiamine deficiency. I began supplementing with Benfotiamine 600mg a day am taking magnesium (Optimum health) at 150×2= 300 at night. My FM doctor said my magnesium was at 4.5 and they like to see it at 5.3. I also take vitamin D3/K2. My vitamin d was on the low side.

When I began supplementing with thiamine at 100mg per day and the Benfotiamine, I notice I was not as tired or fatigued. I was feeling pretty weak there, and I feel better, but the nerve issues have not changed.

Six weeks after finding out I had a thiamine deficiency, I got bloodwork from my FM doctor and my thiamine was now too high, almost as if I wasn’t absorbing it. I should mention that the second test was a plasma test while the first test was done from the serum. From what I have learned, plasma thiamine measures are less accurate. Even so, should I be worried?

My FM doctor wants to test again for Lyme disease. Beyond that, I just don’t know what else to do to resolve the nerve issues. Thank you!

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This story was published originally on October 5, 2023.

Post Lupron Mitochondrial Collapse: A Case Story

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Dr. Marrs and I became aware of the symptoms and some of the laboratory results in a 38 year old woman. We wish to describe the case because it represents what should be an entirely new approach to medicine in general.

Before Lupron

The patient had been an active 38-year-old woman caring for her home and two children, ages 7 and 9 that were her focus, prior to Lupron. She had walked her dog daily, worked out at the gym twice a week and she had renovated her home in the summer of 2017. She had had her gallbladder removed in 2016, said to be because of a polyp. She had received allergy shots once a month for a couple of years. She took birth-control pills. Her history revealed that she had had a severe reaction to penicillin as a child, resulting in a rash and joint swelling causing inability to walk for a short time. She also had a history of frequent sinus infections and antibiotic treatment. In 2017, she began experiencing heavy menstrual bleeding and hysterectomy was recommended. She refused this and a second doctor recommended Lupron in an attempt to change her hormonal balance before hysterectomy.

After Lupron

She had received an injection of Lupron into her left hip and side effects, beginning within a few days, included:

  • Fatigue
  • Skin redness
  • Severe weakness in the legs, and tingling in the left side of the head and right leg.
  • A few days later she developed severe headaches and vomiting.

An initial estradiol patch caused no improvement, so another one at double the dose was prescribed with some improvement (presumably in menses).  By November 2017 the patches were discontinued. She began to experience

  • Joint pain
  • Pain throughout her body
  • Nervousness
  • Shaking
  • Panic attacks
  • Changes in personality.
  • In December she experienced cyclic vomiting and weight loss.

The estrogen patches were prescribed again. She saw an endocrinologist and some laboratory tests were abnormal, including what was described as a borderline high blood glucose.

These symptoms continued and in February 2018, three drugs were prescribed (Celexa, Neurontin, Ambien). They were discontinued two weeks later because there was no relief of symptoms.

In March, she experienced severe fatigue and had episodes of difficulty in walking which were intermittent and described as “almost like being paralyzed”.

In April, she saw a geneticist and some lab tests were performed that I will comment on shortly. A diagnosis of fibromyalgia and possible chronic fatigue syndrome were each entertained. The endocrinologist said that test results indicated that she was not producing estrogen or progesterone.

Based upon conversations with us, she began supplements of thiamine, fish oil, alpha lipoic acid, B complex, folinic acid, ferrous sulfate and methyl B12. Estradiol patches were resumed. We suggested the use of intravenous water-soluble vitamins, since Dr. Marrs and I agreed that giving the nutrients by mouth probably could not reach the necessary concentration of vitamin therapy needed. This was not followed through on by her current physician.

Discussion of Symptoms and Side Effects

The patient’s medical history indicated that she had experienced many different symptoms throughout her life. These included a severe reaction from penicillin and multiple sinus infections. The side effects from Lupron were fatigue, leg weakness, headaches, general body pain, panic attacks and cyclic vomiting. In other words, she had been a classic “problem patient” to her physicians. Since the symptoms could not be defined by usual and customary laboratory evidence the general conclusion was repeatedly that this was evidence of psychosomatic disease. Curiously, this common diagnosis in modern medical circles appears to be that the patient is thought of as inventing her symptoms neurotically without ever considering an underlying mechanism. Even worse, polysymptomatic disease of this nature is usually experienced by the brightest and the best. This is because high intelligence is developed within a brain which is more energy consuming than that of a less intelligent person. Such individuals are much more prone to unforeseen stress events, making them more susceptible to side effects from medication and inoculations. A car engine uses more energy to climb a hill. Stresses that we meet in life are like “hills to be climbed” and involve a commensurate supply of energy.

Laboratory Results: Low Amino Acids, Vitamin Deficiency and Defective Energy Metabolism

Many tests were performed on this patient. Two amino acid tests were performed, one measuring the amino acids found in blood plasma, the other measuring those excreted in urine. A word of explanation is necessary. Amino acids are the building blocks of proteins in the body and finding a given amino acid in very low or unusually high concentration can be used to define important aspects of body chemistry. Of 34 amino acids recorded in the plasma of this patient, aspartic acid, serine, ethanolamine, and tyrosine were severely decreased, while glutamine, histidine, alanine, ethanolamine and tyrosine were severely decreased in urine. All the others were in their expected normal concentration.

Amino acids are used in the body to create proteins, and this is an energy consuming mechanism. One of the deficient amino acids was aspartic acid whose metabolism is important in a mechanism known as transamination. The enzyme that carries out this function requires vitamin B6.

Two of them, ethanolamine and serine, play an important part in transmethylation, a mechanism that is dependent on folate and B12.

The fourth one was tyrosine and it is involved in the synthesis of thyroid hormone.

These low levels suggested that their respective vitamin dependent mechanisms were at fault. Since all the vitamins involved are water-soluble, it invited their administration by intravenous infusion. However, because they were energy dependent reactions, it is likely to construe the possibility that the underlying common fault was energy synthesis.

Was there any evidence from these laboratory results for defective energy metabolism? Yes.

Isocitric and citric acids were reported to be low in the urine and they are vital metabolites in the citric acid cycle, the “engine” of the cell. Also, there was a deficiency of pyruvic acid and this is the fuel that enables the citric acid cycle to function. This constituted strong evidence for energy deficiency with its major effect on the brain and nervous system.

Mitochondrial Energy Synthesis

Our bodies consist of 70 to 100 trillion cells that are being broken down and reconstructed throughout life. Relatively simple molecules are acted on by enzymes in a series of chemical reactions known by biochemists as “pathways”. Each enzyme requires a vitamin and/or essential mineral that assists the action of the enzyme and are known as cofactors to the enzyme. Several pathways reflect the synthesis of energy that is stored in the cell as ATP (adenosine triphosphate). ATP is a little like a battery that is being continuously charged and discharged and most of this occurs in the mitochondria. All the other pathways consume energy, either in enabling function or rebuilding cells. They might be compared loosely to the transmission in an automobile. In other words, the healthy body functions because energy synthesis meets energy demand. The abnormally low amino acids each could be used to suggest a defect in the energy consuming pathways and possibly a reflection of missing cofactors, making the “transmission” defective.

Vitamin Cofactors, Energy Deficiency, and Symptomology

The symptoms expressed by this unfortunate patient pointed strongly to cofactor deficiencies derived from diet that could easily be tested by their administration and clinical effect. The net effect is produced by a gap between energy synthesis and its utilization to meet the stresses of life in general. The administration of cofactors does not necessarily answer the underlying question because of the possibility of unknown genetically determined factors. However, it is safe, non-toxic, may have an epigenetic effect and is relatively cheap. It therefore should be the first approach. The greater the urgency or the severity of symptoms, the stronger the indication for intravenous administration of all the water-soluble vitamins. I have successfully treated many polysymptomatic patients this way, suggesting that mitochondrial function is as much an acquired disease as well as being genetically determined.

A Note About Oxidants and Antioxidants

Think of the body as a machine that consumes fuel by uniting it with oxygen to produce energy. This combination is called oxidation. Like a fire or any form of burning, it can be slow or fast and cellular oxidation seeks an intermediate level. If the oxidation is too slow, energy production is imperiled. If it is too fast or too vigorous, oxygen atoms are “thrown out” of the oxidation process like sparks are thrown out of a vigorously burning fire. These are referred to as “free oxygen radicals”. Like sparks from a fire, they can do damage. Some vitamins act to assist or accelerate oxidation, an example being B complex. They are known as oxidants. Others quench the free oxygen radicals (sparks) and are known as antioxidants. Vitamins C and E are examples.

Without going into the highly technical details, thiamine acts as an oxidant and an antioxidant, thus increasing its importance in metabolism. From this it is easy to see the essential importance of these substances that are obtained from naturally occurring foods and why their deficiency causes disease. Of course, we have known this for a long time, but current medical belief is fixed in the concept that “vitamin deficiency disease has been conquered and the resultant diseases are only of historical interest”. For example, this patient had “borderline high glucose”, something that would occur in the thiamine deficiency disease beriberi. She also had frequent “infections”, now known to be related to free oxygen radical production, indicating that her regulation of metabolism was extremely inefficient. The  amino acids that were extremely low in the plasma and urine could be used to interpret the possibility of missing cofactors, reflecting a chaotic state of metabolism. I must end this by saying that the use of vitamins and minerals in this manner is not (repeat not) simple vitamin replacement. We believe that the vitamin/mineral combination used in high-doses is resuscitating the activity of the corresponding enzyme and it is therefore acting as a drug. Identifying the underlying biochemical lesion is the essential nature of future diagnosis.

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This article was published originally on July 25, 2018. 

Rest in peace Derrick Lonsdale, May 2024.

From Mother to Daughter: The Legacy of Undiagnosed Vitamin Deficiencies

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This is a story of a mother with undiagnosed vitamin B deficiencies who gave birth to a daughter who was also born with undiagnosed vitamin B deficiencies. In the eyes of conventional doctors and labs, there was not much wrong with us, but we knew that life was harder than it should be. We lived managing debilitating dizziness, daily migraines, fibromyalgia pain, chronic fatigue, allergies, hormonal changes, anxiety, and depression. Until we discovered that we were both hypermobile with histamine issues, hypoglycemic, and had many vitamin B deficiencies. The biggest challenge was for my daughter to start taking thiamine (vitamin B1). Her heart rate was all over the place and she had such a bad paradoxical reaction to thiamine that we believe she had been living with undiagnosed beriberi along with POTS.

Mom’s Health Marked by Asthma, Anxiety, Migraines, and a Difficult Pregnancy

All I remember as a child is being afraid to talk in school even if I knew the answer to a question. I had allergies and could not exercise due to asthma. During college, I had to read over and over the same thing because I could not concentrate. I worked extremely hard because the fear of failure was too much to bear. I started to have hormonal imbalances and missing periods. I successfully finished college and moved away to another state. That is when migraines started. Later, I became pregnant with my first child and started having blood clots. Anxiety and depression would come and go with hormonal changes.

When I was pregnant with my second child, my daughter, I was sick every morning with nausea.  After 6 months of pregnancy, I had gained only 6 pounds. Ultrasounds showed that the baby was growing normally, but I was losing weight. At that point, I also could see blood clots on my leg. I was placed on bed rest. By the 8th month, my water broke and my daughter was born. She was jaundiced and placed under UV light for a week. I also stayed in the hospital for a week dehydrated, with blood clots, and with the “baby blues”. We left the hospital after a week, and she had a “normal” development. However, you could see that she was a baby that would not go with anyone, not even the people close to us, indicating some anxiety.

Daughter’s Early Health Issues: Selective Mutism, Asthma, Concentration Issues

When my daughter turned four years old, we moved out of state and that is when she stopped talking outside the house. I later found out that it is called selective mutism, a form of severe social anxiety. She started seeing a school counselor to try to help with her anxiety and self-esteem issues. I brought a girl scout group to my house so that she could start having friends and talk to others in her area of comfort. She also developed asthma and needed nebulizer/albuterol treatments frequently and daily QVAR for prevention. She was given Singulair, but it made her very depressed. Her grades in all classes were all over, from A to D.  She would spend the whole time after school trying to complete homework, but she couldn’t. Her teacher told me that she really did not have that much homework. I would ask her to watch the dog eating and to take her outside as soon as the dog finished but she would be wandering around the kitchen and could not pay attention to the dog. Her neurologist gave her Strattera and that helped a little. Her EGG also showed some abnormal activity. The doctor recommended anti-seizure medicine and said that she was probably having mal-petit seizures. I refused medication based on how she reacted to Singulair and because the doctors were using words like “probably” and “just in case”. I kept an eye on her and noticed when she ate ice cream and got asthma. I had her stop sugars and dairy.  Soon after that, a teacher called me, excited to tell me that my daughter was talking at school. She also was able to stop all asthma medication except for 2 weeks every year when seasonal allergies would hit. At this point, it had been already four years since she stopped talking outside our house. She started excelling in all classes and we were able to stop Strattera. However, the continuous anxiety remained.

The Teenage Years: Continuous Migraine, More Medications, and No Answers

At 16 years old, she got a cold that turned into asthma with a continuous headache that just would not go away. She started waking up every day with a migraine, depressed with no energy. We had to wait three months to see a pediatric neurologist. Meanwhile, I would take her to my chiropractor early in the morning, give her an Excedrin, and she would go to school whenever she felt better. She began drinking at least 2 cups of coffee every day to help with the pain. Sometimes she would go to school at 11am, sometimes at 1pm. Even if there was just one class left, she would go to school. At this point, she felt that she wouldn’t have a future.

When we finally went to the neurologist, he recommended amitriptyline. I had been on amitriptyline and woke up one day not knowing which year or season was, but I was told that the issue was the high dose given to me (125mg), after decades of it increasing it every year. I agreed as long as it was a low dose.  Amitriptyline lessened the continuous headache, but it was not really gone, and she still needed some Excedrin. She started daily aspirin as well. She was just getting by day to day trying to manage her pain and mood and trying to have a normal teenage life.

Increasing Weakness When Outdoors: Untangling Root Causes

She became very weak whenever we would go to the beach or to a park. We would have to drag her indoors and give her water. On some occasions, she would say that she could not see. Somehow, she successfully managed to graduate from high school. We started seeing functional doctors. We found that she had some variants related to mitochondria dysfunction, but we really didn’t know how to address this. We also found out that she had Hashimoto’s and antibodies against intrinsic factors, which was indicative of pernicious anemia. We knew right there, that she had issues that conventional doctors had missed.

We also did a Dutch test and found that all of her hormones were high. The functional doctors suggested sublingual B12, folinic acid, and a B complex. She said the vitamins made her feel awake for the first time. However, chronic fatigue was still a major struggle for her. Eventually, she had to stop folinic acid because it made her depressed and unmotivated. Meanwhile, she managed her anxiety with herbs, but it was a real struggle.  She also continued to have asthma requiring albuterol every fall season. She chose a very challenging career in cell biology with biochemistry. She went through college with many cups of coffee just to control migraines, have energy, and be alert.

Discovering Her POTS Symptoms

The summer of 2019, before her senior year of college, the nurse checked her vitals as part of her new summer internship. The nurse thought the pulse monitor was broken because her heart rate was 120 sitting down. After a few minutes, it went down to 99, so the nurse dismissed it. When she told me that, I started paying attention to her heart rate. We went to her physician and neurologist and in both instances, her heart rate was 100, just sitting down waiting for the doctor. I asked if it was normal, and they said that it was in the upper range but not a concern. I was still concerned and made an appointment with a cardiologist but also bought her an iwatch. She noticed right away how her standing heart rate would be over 100, and by only taking a few steps, her heart rate would go even higher and she would become fatigued and even dizzy. From the heart rate monitor on her iwatch, we could see how quickly her heart rate would climb upon standing and then slow a bit when sitting.

That is when I remember that I have read about POTS and hypermobile people. I remember that when she was a child, the neurologist had said that she was hypermobile, but never said that it could be a problem for her. It just seemed like a fun thing to have. I started asking in health groups and someone mentioned that her medications could also cause high heart rate. I searched and amitriptyline did have that side effect.  That is when my daughter showed me that her resting heart rate was in the 90s and it would fluctuate from 29 to 205 without exercising. When we went to the cardiologist and explained all of this, he said that he did not even know how to diagnose POTS because it is rare. He did testing and said that the heart was fine but there was some inefficiency due to some valve leaking but that it usually does not cause symptoms. I asked about amitriptyline and he confirmed that it could raise heart rate.  At that point, she stopped amitriptyline and her maximum heart rate was 180 instead of 205.

She went back to her last year of college when Covid hit. She came back home and we could see the lack of energy and how much doing any little thing or stress would crash her for days. Since I needed glutathione for chemical sensitivities, I decided to see if it would help her. Glutathione with co-factors helped her recover, instead of crashing for days, she would recover the next day. That is when she told me that every time she walked to school, she felt that she would pass out. When she gets up in the morning, she ends up lying on the floor because of dizziness. Despite her dizziness, daily muscle pain, daily migraines, and chronic fatigue, she had big dreams. She just kept pushing through day by day, with coffee, herbs, and whatever it took, but she knew that something had to change. She successfully graduated in May, Magna Cum Laude, and she had a couple of months to deal with her health before she would leave to start her graduate studies and research job. That is when I found people that knew about Dr. Marrs’ work and thiamine, and her life finally changed.

Introducing Thiamine and Other Micronutrients: Navigating the Paradox

A functional doctor recommended magnesium and niacin for her migraines and they significantly helped. This gave the functional doctor the idea to try tocotrienols. High doses of tocotrienols worked better for reducing her migraine pain than amitriptyline and aspirin combined. Then she started taking high doses of B6. This helped her muscle pain and improved her mobility. Despite being hypermobile, easy stretches gave her intense muscle cramps prior to starting B6. Guided by very knowledgeable researchers belonging to Dr. Marrs’ Facebook group, Understanding Mitochondrial Nutrients, we started Allithiamine. The first thing she said was “wait, the sun does not hurt?”.  I asked her what she meant.  She explained that all her life, being in the sun gave her pain in her eyes and forehead and that she couldn’t understand why people wanted to be outside. No wonder she never wanted to go outside. She also said her migraines were gone. We have waited 4 years to hear that!

After just a couple of days, she started having a lot of nausea and lower-intensity migraines returned.  The researchers knew right away that she needed more potassium. She started to eat apricots, coconut water, or orange juice every time she had nausea and it helped. However, it was happening every hour so we decided to try a different Thiamine. We tried half Lipothiamine and Benfotiamine but she didn’t feel as much benefit and still gave her issues. We went back to 1/10 of Allithiamine. Chatting with the researchers, one asked if she also experienced blinding episodes. Yes! Finally, someone that knew about that! They recommended B2 and we started it. That’s when we discovered that her pain in the sun and dizziness were caused by a B2 deficiency. She continued waking up with crashes needing potassium every hour. She did not sleep that week. The researchers suggested taking cofactors including the rest of the B vitamins, phosphate salts, phospholipids, and beef organs. Beef organs and phospholipids helped with energy and bloating, phosphate salts helped with nausea and irritability.

Then researchers suggested that she needed to stabilize sugars and have more meat. That is when we realized that she had some type of hypoglycemia. We had noticed that she would get very tired and got shaky hands if she didn’t eat. Functional doctors had mentioned that she may have reactive hypoglycemia since she had a fasting glucose of 70. She started having more meat to stabilize her sugars and removed all packaged foods, sugars, grains, and starches. She started having just fresh meat, veggies, rice, beans, nuts, and berries. She felt that she was so much better with beef that she started using it for potassium between meals and bedtime.

She was able to increase allithiamine little by little. She would mix a little bit with orange juice since it tasted so awful. Little by little, she started having fewer crashes and feeling better. It took a month for her to be able to tolerate one capsule of Allithiamine. She was sleeping more but not the whole night. That is when our functional doctor suggested supporting adrenals. That really helped but then she began having stomach pain and nausea after eating beef and developed frequent diarrhea. Chicken always increased her hunger and reduced her energy compared to beef and but now she was afraid of having beef. She stopped all sources of beef and phospholipids.

We consulted a very good functional doctor. She did Nutraeval and confirmed that all her B vitamins were low or deficient and recommended TUDCA and Calcium D Glucarate along with trying lamb and bison first. Both helped in reducing bloating/nausea and she was able to start eating lamb and bison along with reintroducing a minimal amount of carbs. Soon after, she was eating beef again with no pain.  After starting TUDCA, her bilirubin levels were normal for the first time in her life. We continued to work with the functional doctor to fix other deficiencies.

Recovery from Multiple Nutrient Deficiencies and the Prospect of a Normal Life

After Allithiamine and vitamin B2, we worked with our functional doctor to balance the remaining B vitamins. She is now able to go out in the sun without bothering her eyes and without passing out. She gained weight after starting the B vitamins and began looking healthier, compared to how skinny and underdeveloped she looked before. She also learned how to manage electrolytes. She sometimes needs more sodium, but other times needs more potassium. She feels sick when electrolytes get out of balance. Although she still had some continuous pressure in her head, she no longer needs any amitriptyline, aspirin, or Excedrin for pain. One thing that remained problematic was folate deficiency. She still became depressed with folinic acid, so she tried methylfolate instead. She felt so unmotivated that preferred not to have it, but she realized that it was key to something that she struggled with all her life: anxiety. She figured that she could have methylfolate every other day, so that she could have less anxiety.

Now, for the first time, she began to have a normal life. She can now exercise daily without dizziness and her heart rate skyrocketing.  Her heart rate in general is more normal, doesn’t go down to 29 or up to 205. She had not had any asthma requiring albuterol.  She started driving without having to deal with anxiety and panic attacks.  She was able to walk to her office without fainting.  She now can now live alone dealing with the stress of having a full-time job, graduate classes, cooking her food, and exercise every day! She is not cured completely but for a person that once thought she couldn’t have a future, she is doing pretty darned good!

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This article was published originally on July 22, 2021. 

Thiamine Testing in Clinical Practice

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In Thiamine Deficiency in Modern Medical Practice and Threats to Thiamine Sufficiency in the 21st Century, I introduced the concept that thiamine deficiency underlies many common conditions plaguing modern healthcare and identified exposures and mechanisms threatening thiamine stability. In Hyperglycemia and Low Thiamine: Gateways to Modern Disease, I summarized the pattern of metabolic changes associated with modern dietary practices that lead to thiamine insufficiency, hyperglycemia, diabetes, cardiovascular and Alzheimer’s disease. In this document, I will tackle thiamine testing.

Background

As discussed in the previous articles and elsewhere on this website, thiamine is a critical and rate-limiting nutrient for several of the cytosolic and mitochondrial enzymes responsible for the conversion of food into cellular energy or ATP. As such, decrements in thiamine ingestion imperil cell function systemically, leading to the onset, maintenance, and/or exacerbation of a host of illnesses.

Thiamine has a short half-life, 1-12 hours, and absent sufficient and/or regular consumption, thiamine reserves will be depleted entirely within 2-3 weeks. The risk of acute deficiency is common after an extended illness where consumption or absorption is reduced, while excretion or metabolism is increased. This includes any illness where nausea, vomiting, and/or diarrhea are present; where intestinal absorption is compromised, such as with Crohn’s, Celiac, constipation, dysbiosis, or gastric bypass; where excretion is increased such as with diabetes and kidney disease; where fever or the severity of the illness increases the demands of metabolism e.g. hypermetabolic states such as sepsis, burn patients, and in critical care cases more broadly where the metabolic demands of the illness itself and the anti-thiamine qualities of many medications overwhelm thiamine availability. Pregnancy, especially when hyperemesis is involved, should also be considered a hypermetabolic state where thiamine deficiency develops more frequently than recognized and is associated with common complications.

Of the studies that have investigated thiamine deficiency in critical care, the incidence range for deficiency varies by study criteria from 10% to 90% upon admission and increases steadily with each day in the ICU. This suggests that even if the patient is not thiamine deficient upon admission, he/she may become so as time progresses.

The progression to severe thiamine deficiency in the face of critical illness will be expedited if the patient’s premorbid health was challenged by chronic illness that included the use of thiamine-depleting medications, and/or where poor diet and chronic alcohol, drug, or tobacco use were present. Subclinical thiamine deficiency or insufficiency may characterize a majority of patients dealing with chronic illness. It is not well defined, but given the chemistry of thiamine against the backdrop of modern diets and medicines, it is logical to presume that many patients dealing with chronic illness consume insufficient thiamine relative to the demands of their metabolism and are but one crisis away from frank deficiency (see Threats and Hyperglycemia documents for details).

Ideally, the recognition and treatment of thiamine insufficiency would be considered before frank deficiency manifests. Unfortunately, current laboratory testing provides neither guidance on subclinical thiamine deficiency or insufficiency nor consistent definitions of what values constitute frank deficiency. As such, a patient tested at one lab may be considered deficient, while at another, may fall within the normative ranges, even if each lab uses the same methods. Similarly, depending upon the testing equipment and methods, the patient’s thiamine status may be more or less sensitive to recent thiamine intake or other confounding variables that skew the results towards sufficiency when in fact the patient is deficient.

Conventional Methods of Measurement

For clinical purposes, the most important thiamine analyte is thiamine pyrophosphate (TPP), also called thiamine diphosphate (ThDP/TDP). Additional phosphates can be added or subtracted to form thiamine triphosphate (TTP/ThTP) and thiamine monophosphate (TMP/ThMP), which are detectable by different laboratory measures, but as of yet, their utility in the clinic has not been fully extrapolated. It should be noted that the phosphorylation of free thiamine into TPP, requires magnesium and ATP, and so, among the factors that will affect TPP values is magnesium deficiency.

Thiamine may be tested from whole blood, erythrocytes, serum, plasma, and urine. From whole blood, all three derivatives of free thiamine can be obtained. Thiamine pyrophosphate accounts for almost 90% of circulating thiamine, 80% of which, is found in erythrocytes. Free thiamine, TMP, and TTP are found primarily in serum, plasma, and urine.

Whole Blood TPP

Whole blood measures of TPP utilize liquid chromatography-tandem mass spectrometry (LC/MS/MS) or high-performance liquid chromatography (HPLC). In the US, the reference ranges TPP from two major labs, Quest Diagnostics, and LabCorp, are 78-185 nmol/L and 66.5−200.0 nmol/L, respectively. Both use LC/MS/MS. Published reference intervals for whole-blood TPP vary widely across labs, however, from a lower limit of 63–105 nmol/L to an upper limit of 171–229 nmol/L. There is no consensus regarding what value constitutes deficiency and little recognition of what may constitute borderline or insufficient thiamine. Under some conditions, TMP, TTP, and total thiamine values will be reported. There are no consistent reference ranges for these analytes either.

Erythrocyte Tests

Erythrocyte tests derived from whole blood samples may measure TPP directly from isolated erythrocytes, such as with HPLC, or indirectly, such as in the case of the erythrocyte transketolase activation test (ETKA). TPP measured erythrocytes using HPLC requires additional laboratory steps, mostly done for research purposes. Reports suggest that HPLC whole blood TPP and HPLC erythrocyte TPP correlate. Similarly, the research suggests that HPLC whole blood TPP and ETKA tests correspond, but there is much debate regarding which one is more accurate.

Unlike the direct assessment of circulating TPP, the ETKA test measures both basal and thiamine-stimulated activity of the thiamine-dependent enzyme transketolase. Test values are reported as a ratio or percentage of enzyme activation. When thiamine concentrations are sufficient, the addition of thiamine will not activate the transketolase enzyme. When thiamine is insufficient or deficient, transketolase activity will increase proportionately to the deficiency. Higher values correspond with the severity of deficiency.

Although there is no consensus regarding what constitutes deficiency for this test either, the continuum of values supports a gradation of need, which may be more useful clinically, particularly with borderline cases and when clinical symptoms correspond. Accordingly, greater than 17% enzyme activation is indicative of thiamine deficiency clinically whereas experimentally, particularly when comparing the sensitivity of different laboratory tools, >25% activation is considered deficient. It should be noted that the ETKA may correlate better with clinical conditions in thiamine-replete patients but may be problematic in patients with magnesium deficiency or when transketolase protein levels are diminished due to liver disease or diabetes.

The EKTA test was considered the gold standard for 50 years, but it is a time and manpower-intensive test, with a high risk for inter-batch variability. As such, and despite its favorable clinical utility, it has fallen out of favor. Currently, the EKTA test is performed only by research institutions and in a few private labs.

Plasma, Serum, and Urinary Tests

Plasma/serum contains only a small fraction of circulating thiamine relative to the erythrocytes and is sensitive to recent intake. As such, tests using plasma or serum are considered less accurate diagnostically but some labs still offer these tests. The reference range for Quest is 8-30 nmol/L.  More commonly, plasma measures of thiamine are used for research purposes. Similarly, urinary measures of free thiamine, TMP, and other thiamine metabolites are used in research protocols involving excretion rates relative to medication, deficiency states, and/or dietary intake.

Challenge Tests of Old

In the late 1960s, a pyruvic acid challenge test was devised to assess thiamine sufficiency in healthy pregnant and pre-eclamptic women. Much like the testing for gestational diabetes where blood glucose is measured before and after consuming glucose, with the pyruvic acid challenge test, blood pyruvic acid concentrations were measured before and after dextrose ingestion. Pyruvic acid is inversely correlated with thiamine status such that when thiamine is low, pyruvic acid increases.

While healthy women exhibited within range values of pyruvic acid concentrations for both fasted and the dextrose challenged portions of the test, pre-eclamptic women, depending upon the severity of the disease process, showed markedly elevated pyruvic concentrations post challenge. The most severely ill women, those hospitalized, had elevated pyruvic acid both pre and post dextrose challenge. Although, to my knowledge this test has not been used in other populations or for anything other research purposes, it illustrates clearly how thiamine deficiency is a sugar sensitive disease.  Should this type of testing be developed more fully, it could identify pending thiamine deficiency before it becomes testable via other methods.

To Test or Not To Test

Thiamine testing is a complicated topic. On the one hand, laboratory confirmation of thiamine deficiency aids in treatment decisions, but on the other, current testing, such as it is, carries the potential for a high false negative rate and may fail to detect anything but the most severe deficiencies. Since there is no consensus on what constitutes deficiency, much less insufficiency relative to diet, illness, or other metabolic variables that contribute to and precede frank deficiency, thiamine testing in some populations may prove unenlightening. In light of these issues, it is tempting to forego testing altogether and proceed directly to treatment based on clinical symptoms. Insofar as thiamine is a safe and essential, water-soluble nutrient, clinical suspicion may suffice and should suffice in acute cases where time is critical. To the extent that medicine strives to be data-driven, however, regular testing, before and during treatment, in conjunction with symptom tracking, may afford much needed insight on the relative value of thiamine in health and disease and may aid in the expansion and refinement of clinical reference ranges.

Postscript: Since this article was published originally, a new version of the transketolase test has been developed: the Erythrocyte Transketolase Activity Coefficient (ETKAC). It is being offered by the Clinical Immunology Laboratory, in North Chicago, IL.

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This article was published originally on May 9, 2024. 

A Life of Low Thiamine Leading to Wernicke’s Encephalopathy

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I am a 40 year old male with recently diagnosed, but chronic, severe thiamine deficiency (plasma thiamine <6 nmol/L September 2025) – Wernicke’s Encephalitis. I have all of the classic symptoms like nystagmus, ataxia, and cognitive issues, along with a long list of other symptoms that have accrued over time. I have had a horrible diet since childhood, consisting mainly of fast food, and in my twenties, I drank a fair amount of alcohol. I have also had several bouts of food poisoning, including a c diff infection in August 2025. Antibiotics have been a mainstay since childhood. Once thiamine deficiency was recognized, I was given IM injections and told to supplement orally. I feel worse. Something is missing and I need help. Below is my case story. If there is anyone out there that can help, please comment.

Childhood Marked By Poor Diet, Infections, and Failure to Gain Weight

My youth was filled with many upper respiratory and ear infections that I was giving antibiotics for. I had a “fast metabolism” and could never manage to gain weight, no matter how much I ate. I never wanted to eat the healthy food that my mother would cook and always wanted candy and junk food. I would eat things like lucky charms, brown sugar and apple cinnamon instant oatmeal. By the time I reached high school, I was consuming fast food quite often, and then when I got into sports and weight lifting, I was consuming sugar-filled meal replacements, and protein supplements, and microwave meals.

At 16, I developed a rash on my hands every winter. It would crack and bleed and my joints became stiff. I later learned that this was eczema or psoriasis. I was given a corticosteroid cream. After high school, the rash continued to get worse, and never healed. When I was about 21 years old my hands were so stiff that I couldn’t bend my fingers. They were completely cracked and bleeding all over.

Along with this, my ears, and all of the cartilage in my body, turned solid. I wasn’t even able to flex my ears or ear lobe and every time breathed in it felt like I was being stabbed in my left lung. The doctor diagnosed me with relapsing polychondritis, pleurisy, and psoriasis. High dose corticosteroids and corticosteroid creams were prescribed.

The Poor Diet Continues: Heart Symptoms Emerge

In my twenties, I lived off of cheesesteak sandwiches, pizza pockets, French fries, and soft drinks. I only at couple meals a day and usually skipped breakfast. I worked, partied and fluctuated being not enough eating too much. I lost a bunch of weight and began losing my hair.

In my late twenties, I got a much better job with a lot more responsibility and a lot of stress but my diet was still horrible. I would skip breakfast and then gorge of double orders of fast food meals for lunch. I began gaining weight but I was going to the gym so I’d managed to build an unhealthy muscular physique.

At some point, I began having episodes where I would have my heart racing, chest pain, and other symptoms that felt like I was having a heart attack. Hospital visits concluded that these episodes were panic attacks, however, they did note that my cholesterol, and triglycerides were high.

A Healthier Diet But More Alcohol and More Unexplained Symptoms

In my thirties, I made some changes to my diet. I began eating a healthy breakfast but was still eating out for lunch and having large portions. I added in raw vegetable powders and multiple organ capsules to diet. I also began drinking more alcohol.

My psoriasis flared. I developed random internal vibration episodes and very subtle full body tremors, as well as being jolted awake in the middle of the night. I decided at this point it was time for a change. I tried to eliminate dairy, grains and gluten, chocolate, sugar with the hope that this would resolve my inflammatory issues. Unfortunately, it made matters worse, likely at least partially due to the alcohol consumption.

Magnesium Oxide, a Benzodiazepine and an SSRI

Within about a year, I had lost a significant amount of weight, ended up with significant sleep issues, increased anxiety, and had the worst brain fog of my life. I could not function properly at work and was losing my hair in significant amounts. I visited my doctor who was very well meaning and spent quite a bit of time trying to help. He found that my magnesium was low (1.6), so he gave me magnesium oxide as a prescription. This caused severe loose bowels and just made things worse.

He also told me that I had a genetic predisposition for high adrenaline, and proceeded to give me propranolol to calm that down, as well as a benzodiazepine and SSRI that would “help with my insomnia”. I was not depressed. I just couldn’t sleep and felt like I was in high gear all the time. Instead of doing research and because I trusted this doctor, I took the medication as he advised.

The SSRI made me want to crawl out of my skin, but the benzo allowed me to sleep 6-7 hours, stopped the tremors and being jolted awake. We went through three different SSRI’s until settling on Lexapro. I was on these for about a year until I actually did some research and learned how they were harming my body. I then decided to ween myself off. That process was brutal, with the feeling of brain zaps, worse tremors than before, and intense insomnia.

Brain Fog and Dizziness Worsen

Around this time, a friend and I started a snow removal company. The job was extremely physically demanding. I was out for 24+ hours at a time in freezing temperatures, not only in the truck, but also out shoveling and carrying around a 50lb buckets of salt to spread. I didn’t eat much while out, and lived off coffee, milk and orange juice. We also started going out on the road for weeks at a time, staying in hotels and working 12-16 hour days in food factories, repairing their equipment, and starving myself.  During this time, I experienced some of the worst brain fog I had ever felt. I couldn’t make sense of anything.

In 2016, I discovered the Ray Peat way of living. I eliminated a number of foods from my diet and began consuming a lot of coconut oil, ice cream, milk, orange juice, but at a significant calorie deficit. The diet made me weaker and I wasn’t able to keep up with the business. In 2017, I got a part time job at a grocery store, thinking it would be easier physically but beginning work at 4 am became problematic. The brain fog continued to worsen.

First Bout of Food Poisoning: Cipro and Flagyl Prescribed

Sometime between 2018-2019 I got campylobacter food poisoning from an undercooked burger. I was given Cipro and Flagyl. The Cipro caused joint inflammation and so they advised to discontinue it and finish the Flagyl. After these meds, I had a horrible time concentrating and completing department order at work. I was spaced out while driving, which even led to a couple auto accidents, more frequent tremors that even my girlfriend noticed, and I would randomly wake up with full on shaking, followed by nausea and vomiting. My magnesium still continued at the very bottom of the range, so I started using ReMag in an attempt to move the needle, which mostly just put me in the bathroom. I also started taking taurine, niacinamide, and thiamine HCl. My cholesterol and triglycerides were still elevated.

In 2020, I worked through COVID, as we were essential workers. Luckily, I did not get COVID at this point. I continued taking vitamins, taurine, magnesium, and began desiccated thyroid. I also ate bags of dried organic apricots and mangoes daily. They seemed to help with energy levels.

First COVID Infection and New Onset Food Allergies

In 2021, I began a new job and got COVID for the first time. At that time, I consuming a daily smoothie with full packs of frozen 365 organic strawberries, mangoes, dark sweet cherries, peaches, a cup of orange juice, and Mt. Capra casein protein. The casein protein exacerbated the brain fog. When I eliminated it, the brain fog wasn’t as bad. Odd because I was able to drink milk in the past, just not consume whey protein.

COVID hit hard and took me out for almost a month. I had fever, low O2, and high heart rate. I took aspirin every 4 hours and this seemed to lessen the symptoms pretty quickly. I spent most of my days in bed, eating scrambled eggs, butternut squash soup, chicken soup, and mozzarella cheese. Toward the end of the COVID infection, I developed excruciating pain in my left thigh. I thought it was a blood clot from lying in bed for too long, but an ultrasound ruled that out. The pain and COVID-related shortness of breath remained for about a month. After that everything was back to normal, except now I had food allergies. I could no longer eat the butternut squash soup nor could I eat mozzarella, or the sweet potatoes or French onion soup I would eat prior to getting sick.

Few Good Years with Thiamax Despite Another COVID Infection

Late 2021, I began taking Thiamax to replace the thiamine HCl I had been taking. When I began, I had a little extra brain fog, but I attributed it to the COVID. I also added methylene blue to the mason jar of orange juice I would take with me to work to sip on, along with great lakes collagen. Things started looking up. The brain fog started subsiding and I was able to function at work.

I continued to have the startle awake reactions and tremors. These mostly would happen if I tried to take a nap during the day. Any time I would start to fall asleep, I would be immediately jolted awake and then experience a full body vibrations sensation. This happened every time I started to nod off. I was thinking maybe it was due to the thyroid, but I was still at the very bottom of the level for magnesium when tested.

2022 Was fairly uneventful year, although I did catch COVID again. This time it was very mild and I was only out of work for less than a week. I had all sorts of allergies to food, but the brain fog seemed much improved. The startle awake and vibrations remained and my magnesium was still low.

In 2023, I was in ER early in the year with odd abdominal and back pain, nausea. I thought it could be food poisoning from daily Uber eats lunch orders. Some blood was found in urine. They said it was gastritis and to take Pepcid. The rest of the year was uneventful. I was still taking Thiamax and desiccated thyroid daily. My energy levels were better. I had less brain fog and my body temperature improved. Magnesium was still borderline low but calcium on many blood tests above 10.

Food Poisoning Again and More Antibiotics

Towards the end of October 2024, I got food poisoning again. This time it was salmonella. I had non-stop vomiting and loose bowels for over a week. I was prescribed Flagyl, but did not take it, and Cipro, which I took for 7 days, with gradually worsening joint pain and inflammation. Cipro was discontinued and replaced with Cefixime. A stool test one month later revealed that salmonella had colonized, and they would not give any additional antibiotics to help clear it up. From this point on into 2025, I never felt the same. I had also stopped the Thiamax and was only taking forefront health b-complex and forefront health desiccated thyroid. I was still borderline low magnesium.

The Downward Spiral

By early 2025, I had much worse brain fog, frequently lost train of thoughts, couldn’t concentrate at work, started getting odd reactions to ice cream, mashed potatoes and other foods. They would cause a full body itching, and internal vibrations when I would eat them. Constipation was the norm, and my doctor told me to take two magnesium oxide tablets a day to help, my gastroenterologist told me to take biscodyl daily to help. I started to have a constant feeling like my throat was inflamed.

In May, I was diagnosed with eosinophilic esophagitis. For the endoscopy, I was given propofol and fentanyl for anesthesia. It took over an hour to wake up from and the entire week following, I felt like I had just woke up from the anesthesia. A few weeks later, I was given high dose Omeprazole to correct the eosinophils. I was also advised to eliminate eggs, dairy, wheat, soy, fish, nuts, and corn from my diet.

In June, I received the results for the buccal swap Mitome profile. It showed 404% citrate synthase, normal Complex I, low-normal Complex II, low-normal Complex II-III, and low (24%) Complex IV.

I tried to start implementing the proposed protocol but it seemed to be causing more symptoms. I started tracking glucose, ketones and lactate daily per Chris Masterjohn’s recommendation. I was going out for daily walks and hitting around 8k steps.

A Tick Bite, More Antibiotics, and a C. Diff Infection

In July, I had a bullseye tick bite and the doctor prescribed doxycycline. The doxycycline causing worsening tremors and severe tinnitus, I stopped taking it, after which both began to subside. I was walking daily.

In early August of 2025, I went to the ER with nausea and vomiting. They sent me on my way after doing a CT with contrast and seeing inflammation of the stomach and intestines. They said it was the stomach flu and to stay hydrated. This persisted and worsened for a week and so I was admitted to the hospital. A stool test it was found that I had an active c.diff infection and was colonized with salmonella from the prior food poisoning. I was given ceftriaxone IV, and vancomycin oral.

In addition to the antibiotics, I was given IV’s with sodium chloride and lactated ringers and initially and I felt better. Then they switched over to D5NS, a saline solution that contains 5% dextrose and I felt worse again. Dextrose depletes thiamine and I was already malnourished and thiamine deficient. Nevertheless, within three days of my hospital admission, I was able to consume food by mouth again, around 2,100 calories per day consisting of burrito bowls for breakfast, lunch and dinner, that contained carnitas, rice, pinto beans. I walked the halls doing lunges and calf raises to stay as active as possible.

The morning I was to be discharged I was advised that my magnesium and potassium were both low and given two pills to correct those levels. Vitamin B1/thiamine was not checked. I was also given a 10 day dose of azithromycin.

Severe Thiamine Deficiency Lurking

At discharge, I felt very weak, had tingling and weakness in the legs and severe brain fog. That night at 6pm I took my dose of vancomycin, and my first dose of azithromycin. The next day, I awoke with severe digestive distress continuous diarrhea throughout the day. I returned to the emergency room feeling like I was dehydrated, but they stated that all of my levels were normal and I was discharged.

The following morning, I awoke again with severe digestive distress, and upon standing my heart rate spiked to over 160 beats per minute. I rushed to the kitchen and grabbed some Pedialyte, thinking it was just dehydration, but this made my heart rate beat faster and caused blurred vision. I thought I would faint and I felt an impending doom sensation like I was going to die.

I called 911, and medics arrived and proceeded to perform an EKG, which merely showed sinus tachycardia. They were unable to get my heart rate down in the ambulance, and upon arriving back to the emergency room, I was left to wait for 6 hours before I was able to get any fluids. When they attempted to draw my blood, my veins were flat and they weren’t able to get blood to flow into the vial. This would later become a trend, with blood vessels in the arms and hands constantly appearing shriveled and misshapen, and my mouth felt dry like sandpaper despite trying to drink water.

Oddly, my electrolytes all came back in normal range. My heart rate stayed around 110 to 120 beats per minute the entire wait even while seated in a wheelchair. When I was finally brought into the ER, I was given one large bag of sodium chloride administered rapidly. This initiated a weird sensation in my chest and uncontrollable coughing.

They took me for a CT scan with contrast, and then for a chest x-ray to check for fluid in my lungs, but found none. I was then given a bag of lactated ringers and my pulse began to normalize. During an orthostatic test, my pulse spiked over 100bpm upon standing. They gave me another bag of sodium chloride, performed another orthostatic test and my pulse remained under 100bpm. I was advised to discontinue the azithromycin, and my diagnosis was listed as severe dehydration.

After discharge, my legs were very weak and I had an odd internal vibration, buzzing sensation. My whole nervous system felt very irritated, worse than I ever experienced before. The nerves in my spine and lower back felt raw and like they were being poked. This and tremors, prevented sleeping. I also developed muffled hearing. I was switched from vancomycin to dificid 3 days later.

From that point on, I had worsening neurological symptoms, odd episodes of confusion while driving. I didn’t know where I was even though I was near home. If I looked in the mirror it felt like the room spun. I finished my round of dificid on September 1st.

Increased Need for Sodium and the Continued Downward Spiral

Since my hospital stay, I the only way to keep my heart rate somewhat normalized was to drink several electrolyte beverages or consume large amounts of salt throughout the day. On September 2nd, I developed severe neurological symptoms and diarrhea after consuming a large fruit smoothie.

I noticed that when I ate pulled pork, I would I had more energy and was in a better mood but developed reactions to the garlic and spices used in it. As a result, I switched to a more bland diet consisting mostly of a plain ground chuck, plain chicken with salt, and applesauce.

In mid-September, I added plain white rice to my bland diet with hope of adding more calories. I had lost over 40lbs at this point. The rice probably made matters worse. I developed episodes fuzzy vison. I saw floaters in my eyes, as if I was staring into a bright light. My hearing would go out and I would just have a loud ringing or buzzing in my ears. My pulse would spike to 150 or higher. I became dizzy and felt completely intoxicated, despite not drinking alcohol. Every muscle in my body twitches including my face muscles, and I’ve been told that my eyes will twitch when trying to look straight forward. This is triggered when exposed to heat, bright light, exercise, strong smells or any sort of stimulating experience.

Polyuria and More Thiamine Deficiency Symptoms

In late September, I was excreting around 2L of urine in a few hours despite normal consumption. I went to the ER for IV fluids and then again two days later after having that feeling of impending again. I had white rice for dinner.

I had an EKG, blood work, and was given a potassium in IV, as my potassium was low. They tried to discharge me, but I argued for admission. Nephrology and endocrinology performed a variety of tests. A 24 hour urine test measured 8 liters of urine despite consuming only 2 liters. After urine began to concentrate again, I was discharged. Upon discharge, when I attempted to stand my legs were so weak they almost collapsed beneath me. I felt numb from the waist down.

We Finally Tested Thiamine: Undetectable

That night, I went to a university hospital emergency room and during my 13 hour wait to get in, I desperately searched for answers. I chanced upon hormonesmatter.com and ordered the kindle version of Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition and began to read. Once a bed was finally ready in the ER, I told them my story and they started running a number of labs.

I was seen by several doctors, neurologists, and a pulmonologist. They ran orthostatic vitals, several blood labs, and upon my doctor’s recommendation they admitted me for observation (he was leaving his practice that day). They did an MRI of my spine, took me for an EMG and nerve conduction tests. In the MRI they noted some slight degeneration in the spine, and red marrow reconversion throughout. EMG and nerve conduction tests were mostly normal, however, they noticed some diminished sensation in my left lower extremities and toes and a mild gait disturbance.

I requested a vitamin B1 plasma test, along with copper, iron, zinc, and others. I was kept for observation for a few days and given IV fluids, which kept pulse fairly normal. The thiamine test had not returned by the time of discharge.

A week later when the result came back, it was <6 nmol/L, which is basically undetectable.

I was extremely excited, finally getting some answers as to why all of these things were happening. The doctor prescribed intramuscular thiamine 500mg in total, to be given daily for a week, followed by 400mg thiamine HCl orally and IM shots every three days for the next two weeks. The first shots were that very night.

Thiamine Repletion Has Been Brutal

After my first dose, I slept well for the first time in months but the next morning when I attempted to stand, my pulse spiked up but my blood pressure tanked to 89/62. I could no longer walk for more than a short distance. I tried to continue my regular 8-10k steps daily, but after a couple hundred steps, my body would completely shut down. My vision became fuzzy, I saw floaters or like flashing lights and my pulse would skyrocket even though it was already high. The Holter monitor recorded sinus tachycardia and some SVT’s. My legs were so weak, they tremor and felt like they were going to give out beneath me and I felt like I could not get enough air in.

This entire time I was getting the thiamine shots, I struggled to consume enough calories on a daily basis.  Surely, eating only 900-1000 calories didn’t help my situation, I just couldn’t eat any more. When the shots were stopped in November, my health declined further. At this point that, I began significantly increasing my dose orally and adding other forms of thiamine. This made everything significantly worse.

By mid-November, at this time I was getting around 300mg of magnesium malate per day, taking a daily multivitamin (Seeking Health One Chewable), as well as Forefront health thyroid B-complex), and only able to eat boiled chicken and applesauce. Anything else made my GI symptoms unbearable and caused worsening tremors and internal vibrations. Per my records, here is the dosing I followed.

  • Week 1 (first 5 days): 500mg IM thiamine HCl shots, once per day.
  • Days 6 & 7 picking up with 200mg of thiamine HCl by mouth twice per day for 400mg.
  • Week 2: 200mg thiamine HCl by mouth twice per day for 400mg, with one 400mg IM shot on Thursday.
  • Week 3: 300mg thiamine HCl, plus 150mg benfotiamine by mouth twice per day, with one 400mg intramuscular thiamine HCl shot on Monday and 400mg IM thiamine HCl shot on Thursday.
  • Week 4: 300mg thiamine HCl plus 300mg benfotiamine by mouth twice per day, with one 400mg IM thiamine shot on Thursday.
  • Week 5: 300mg thiamine HCl, plus 300mg benfotiamine by mouth twice per day, no intramuscular shots.
  • Week 6: 300mg thiamine HCl, plus 300mg benfotiamine by mouth twice per day, no IM shots. Wednesday and Thursday attempted to add morning and afternoon dose of Thiamega and cut benfotiamine back to 150mg and thiamine HCl back to 100mg. This led to extreme anxiety, significant increase in pulse and panic attacks.
  • Week 7: same as above but have begun having random panic attacks, adrenaline surges, pulse spiking to 160bpm randomly. I can’t sleep at all (last week and the weeks before I was getting 7 to 8 hours per night typically). Now I wake up at 2am and feel air hunger and have random surges in pulse, spasms and closing of my esophagus. I went to the ER yesterday and they found nothing wrong. All electrolytes were on the lower end of normal. I have tremors, dysautonomia and POTS symptoms again and I am losing weight again.”

The Hell Continues: Confusion and Food Intolerances

Thinking I was taking too much thiamine, I reduced intake to just 150mg benfotiamine and 350mg thiamine HCl for a couple days. This was right before Thanksgiving. My neurological symptoms were getting worse, and now I was experiencing dizziness, cognitive decline and new vision problems, but the shortness of breath had begun to subside.

I had an appointment to see a nutritionist. I showed up at the appointment and had this new surge of confusion, as well as a significant increase in pulse while walking in, my body felt ice cold even inside the building.

After going over all of the foods that I was having issues with and what my allergist told me to avoid, we were left with almost nothing. She said, at this point you’re going to just have to try to start eating anything you possibly can to add more calories, because you’re lucky if you’re getting 600 calories per day.

As I walked out of the building from this appointment, I experienced the worst brain fog that I had experienced to date. I walked around the entire parking lot but I could not remember where I parked my car. My pulse extremely high and I was dizzy. I felt like I was in a dream and I could not make sense of anything that was going on around me. I eventually found my car about 20 minutes later.

Since I was struggling to come up with ideas of what I could eat and unable to tolerate most of the things that I tried at home, I decided to go back to trying Chipotle. It turns out, I can tolerate Chipotle carnitas. So now, I eat two chipotle bowls with double meat, double brown rice and light beans. It’s nowhere near an ideal healthy meal but at least I can eat – sort of. I now get migraines a few hours after eating and internal vibrations and tremors.

I started taking Zyrtec daily, because I tested positive for a rice allergy on both blood and skin tests. I continue to eat Chipotle and use Zyrtec to manage the allergic reactions. I also take quercetin, a mast cell stabilizing supplement, and butyrate supplement.

Another Medical Procedure With Anesthesia

Mid December, I had a recommended colonoscopy and endoscopy. Given my problems with anesthesia, I was worried. The prep process was very rough on my body and caused even more palpitations and higher heart rate. I don’t think the thiamine I was taking was absorbed and not eating made things worse. Surprisingly, coming out anesthesia was okay, but the first time I tried to drive, I had a major energy crash. I felt like everything was moving in slow motion and my brain was running out of energy would shut down. My vision was fuzzy, my hearing went out and I just had a loud ringing as my pulse spiked up. I felt like I was completely intoxicated. Every muscle in my body started twitching, tremoring and then lost strength. I messaged my neurologist and they responded that it sounds like a panic attack, and I should take some Tylenol for my intense migraine headaches. I was not a panic attack.

I have been unable to drive since. Every time I am in the car with someone going to an appointment, all of the visual stimulation from trying to process cars and what’s going on the road and around me, causes what feels like a mental shutdown. I also feel like I’m intoxicated constantly, especially when in the car, or looking into a mirror. It has gotten to the point where it is hard for me to focus on things mentally, or make sense of things I read or watch. I’m not sure if this is all due to the B1 deficiency or if it’s partially due to the c diff infection and all of the antibiotics.

My Health Is Failing and I Don’t Know What to Do

I am struggling daily to maintain a proper electrolyte balance. If I sip a 33oz coconut water throughout the day and add a little salt here and there, in addition to the sodium I’m getting from food, I end up feeling dizzier, like my blood pressure is too low. If I take 450 mg of sucrosomial magnesium, I still have full body tremors, muscle twitching and a migraine. If I increase the magnesium the twitching subsides, but dizziness increases and I feel faint. I’ve even tried using 350mg sucrosomial magnesium with 144mg of magnesium l-threonate (hoping this would help with brain symptoms.

I’ve tried to introduce healthier foods, such as the farm eggs that I used to eat every morning, ground lamb, fresh-squeezed orange juice, but my body just seems to reject these. So I am left with the Chipotle, with double carnitas, double brown rice, and light pinto beans. I realize these meals are not the healthiest options and probably not doing me any favors with the brain fog, migraines and other symptoms but I don’t know what else to do. Are my continuing symptoms all related to the thiamine deficiency, my diet or something else?

Adding More Supplements

On December 19th, I began taking Lipothiamine. I began with 12.5 mg once at breakfast, along with 150mg benfotiamine, and 250mg thiamine HCl.  For lunch, 150mg benfotiamine and 100mg thiamine HCl. That day I had much more severe dizziness, my head felt like it was in a vice, and I was experiencing lapses in time. I went to the ER thinking maybe it was an electrolyte issue. They said electrolytes looked fine. Potassium and sodium were at the very low end of normal, but they were not concerned. They did a CT of my brain (again) and did not find any irregularities. I was offered a migraine cocktail consisting of antihistamines and morphine or something like that, and they offered to keep me for 24 hour observation. Since there was nothing else they could do for me, so I declined. I was given a bag of sodium chloride and discharged.

On the 20th, I increased to 12.5 mg with breakfast (plus 150mg before/250mg HCl), and then 12.5 mg with lunch (plus 150mg benfo/100mg HCL. I held that dose until December 23rd, when I was able to resume the intramuscular shots.

After the intramuscular shots, I felt like I had more energy, I was much more social, and felt like symptoms had improved slightly. The next day, I increased my Lipothiamine dose to 25mg with breakfast, keeping the same benfo and HCl doses as the prior days. All of the symptoms got much worse. I felt a significant increase in the dizziness, heart rate picked up, it felt like I was walking through a dream.

On December 25th I added another 25mg of Lipothiamine with lunch and kept the bento and thiamine HCl the same (so 25mg lipothiamine with breakfast and 25mg with lunch). Symptoms continued to worsen. I also began taking CoQ10 ubiquinol (50mg with breakfast and 50mg with lunch), mitosynergy copper (split .5mg with breakfast and .5mg with lunch), black seed oil/curcumin (one capsule with breakfast, one with lunch). Lactoferrin (one capsule with breakfast, one with lunch), Jarrow reduced glutathione (one capsule before breakfast, one before bed), liposomal vitamin C (twice a day), creatine (4 split doses 3g total per day),

Elite IgG ImmunoLin blend for gut healing (one scoop before breakfast), ProButyrate (2 capsules before breakfast, two before dinner), and Hesperidin capsules (one capsule with breakfast to help with neuroinflammation).

From December 25th on I have been following the same protocol, with everything listed above, with the exception of adding Thiavite to my morning doses which adds all cofactors and increases TTFD by 15mg in the morning dose.

Reasoning Behind the Recent Supplements

I added the lactoferrin and black seed oil/curcumin as part of my Mitome protocol. When I did the Mitome test back in May 2025, it showed complex IV was at 24% and noted that I should be supplementing with heme iron, or if my ferritin levels were high that I should utilize whey protein/lactoferrin, with black seed oil and curcumin to lower inflammation so that trapped iron was released from ferritin.  It also noted that I should be using copper to support complex IV cytochrome C oxidase enzyme.  For the low complex II and II-III it noted coq10.  I’ve added all of these in, and hope that if what I’m also dealing with an addition to a thiamine deficiency, is also mitochondrial dysfunction, that this will help to support my mitochondria and correct all of the issues that I’m having. In recent lab tests my copper was on the low end of normal, but so was ceruloplasmin, with a free copper over 15.  In my iron labs, my iron was at the low end of normal, with transferrin below the normal range, and ferritin at the top of the normal range, with saturation at around 30%.

On December 31st, I did another 400mg of thiamine HCl intramuscular shots, and again the first day I felt more social and talkative, but since the 3rd I’ve been feeling very off. Migraines are back even worse, a sensation of extreme nervous system irritation and randomly losing hearing in my right ear. I feel like I still cannot get my electrolytes managed properly, and I’m left feeling like I’m never going to get back to my old self. My pulse was somewhat normalized in the morning before eating breakfast and at night, now it’s elevated again.

Where I Am Now

The last few days I’ve also had a lot of digestive upset. I’m getting more hives like reactions to all foods. Overall, I am very fatigued and feel like I’m walking through a dream. I don’t know how to continue supporting my body without causing more inflammation. I don’t know if this is all related to the B1 deficiency or if this is a much larger issue that I need to be working on.

I’m trying to walk around as much as possible so that my body will stimulate more mitochondrial biogenesis. I would to get to the point where I can drive again but my legs feel weak and I have very low energy levels. My doctors are pushing for me to do a stress test in one week, and if all goes well, they would like me to start physical therapy and occupational therapy. At this point, I feel like that is just going to make things worse, because every time I try to do anything physically or mentally taxing, I crash and then the next few days are miserable.

My time is also running out for being able to return to work. If I’m not able to return in the next 4 weeks, my position will be opened up. I’ve even tried to spend time with family, and simply holding a conversation causes the over stimulation reaction where I start to feel faint, my pulse rises, and my vision gets fuzzy, etc.

Please help me get my life back. I want nothing more than to return to work, spend time with family, and friends and help others who are in similar situations.

Post Script: I just learned that the IM thiamine shots I was prescribed contain 400 mcg/mL of aluminum each. I have been injected with a neurotoxin for months now. I have not been able to find a clean IM. If anyone knows of an IM thiamine without aluminum, please let me know.

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Photo by Marco Bianchetti on Unsplash.

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