dysautonomia

When Glaucoma Is More Than an Eye Disease

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Dr. Marrs and I are very much on the same plane of thinking. We both believe that much of the illness in America is not being recognized for what it really represents, hence the publication of our book:  Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition. I want to give you an illustration of a typical situation where the patient is falling through the cracks of modern medicine. I live in a retirement home and one of my friends who is resident here told me the following story, believing that his medical history was a reflection of how well he had been treated.

Open Angle Glaucoma: A Marker of Autonomic System Dysfunction

His story begins in his forties with a burgeoning glaucoma in the left eye. He told me that the surgeon had to make a cut in his eye to let the fluid out and he later required a corneal transplant. At the time he was smoking a pack a day of cigarettes. He continued by telling me that he periodically had cardiac palpitations and in his fifties he had cardiac bypass surgery and was being treated with aspirin. He still experiences heart palpitations. At present, he has periods where he is unable to catch his breath, sometimes for half an hour or so. As he was telling me his story, I could clearly see that all of these events might easily be put together with one underlying cause. Ophthalmologists (eye specialists) know perfectly well that one type of glaucoma known as “open angle” is not a disease of the eye. It is a disease of the autonomic nervous system (ANS), so let me try to explain this.

The eye-ball is filled with fluid that has entry and exit portals, allowing for the circulation of nutrient bearing fluid throughout the eye. Entrance and exit are controlled by a branch of the ANS. If the exit mechanism fails, the fluid cannot leave the eye and the pressure builds up. The exit is in an angle representing the detailed way in which the eyeball is constructed, hence the termination “open angle”. The key to relieving the fluid buildup is by fixing the neurological control of the entrance and exit of fluid.

The trouble with this is that the pressure can build up slowly and even the vaguest eye symptoms are unlikely. Even when visual limits are first noted, the disease is usually quite advanced. Increased blood pressure or family history of glaucoma may be an indication for an eye examination on a regular basis. The next thing to be understood is that the ANS is not symmetrical. In other words the right half of the body is controlled differently from the left half, thus explaining why the glaucoma can be in only one eye. In my view, in an ideal medical situation, the eye doctor should have advised the patient of the underlying cause and referred him for further evaluation. The patient should have been informed that the “pack a day” of cigarettes was the underlying cause of the glaucoma. He is unlikely to have suspected the connection.

Other Symptoms of Autonomic Disruption: Sleep Apnea, Dyspnea and Heart Palpitations

Evidence for the ANS association has been shown by the fact that sleep apnea (repeated temporary cessation of automatic breathing in sleep), surprisingly common in the United States, is prevalent in primary open-angle glaucoma patients. Although this would be a potential clue for an eye examination, there was no history of sleep apnea indicated by my friend. This disease develops because of defective control mechanisms in the brainstem and automatic breathing, particularly necessary in sleep, is mediated through the ANS. The complaint of cardiac palpitations also indicates abnormal activity of the ANS, because the speed and regularity of the heart is controlled by this system. Finally, his difficulty in breathing with the technical name of dyspnea is typical of heart and lung disease. His previous history of heart palpitations suggests that this is heart-related. I would suggest that his health is in a precarious state and I think that he might wind up eventually by being treated with nasally administered oxygen, as I see repeatedly in other elderly residents. I often wonder whether the oxygen is really giving benefit if the catalysts that enable cells to use it are in insufficient supply, because they are never given a thought.

Disparate Symptoms within the Framework of Dysautonomia

Most people know that we have two nervous systems. One is known as voluntary and the other that takes care of all automatic mechanisms in the body, is called the ANS. This is the nervous system with which we are concerned here. The brain may be thought of as having two primary sections. The upper part thinks while the lower part automates by signals to and from all the organs in the body through the wiring of the ANS and a bunch of glands known as the endocrine system. Another illustration of asymmetry, as indicated in this case of glaucoma, is the fact that nerves from the ANS deliver a different signal to the heart from the right side of the body versus the left side. One controls the strength of contraction of the heart while the other controls the speed at which it beats. Therefore, it is not too difficult to understand that heart palpitations are a function of this nervous control and that their cause is the same one that gave rise to glaucoma, faulty action of the ANS. Finally, the difficulty in breathing is because of defective metabolism in the brainstem where automatic breathing is controlled. That is why glaucoma and sleep apnea sometimes occur together as we have stated.

Why the Autonomic System Becomes Disturbed? Poor Oxidative Metabolism

The lower part of the brain, known as the limbic system, is a complex of cells that come together in the operation of the ANS and endocrine system. The metabolism of these cells is inordinately dependent on a high rate of oxygen utilization. Because of this, they are very sensitive to thiamine deficiency, resulting in what is sometimes referred to as brain pseudohypoxia (false lack of oxygen). The lack of energy in these cells produces abnormal function in the ANS.

The toxic effect of smoking results in slowly producing damage in oxidative metabolism. This may give rise only to minor changes in mental or physical fitness, sometimes for years, but the metabolic inefficiency eventually affects the ANS, often initiating serious disease, as in this case. Although smoking is generally thought of as the commonest cause of lung cancer, it has a much wider danger of triggering virtually any disease because of its role in reducing cellular energy. There is circumstantial evidence that many, if not all, diseases are the result of oxidative dysfunction. Zbinden published a paper in which he found 696 papers that described treatment of 242 different diseases, other than beriberi, with thiamine, providing a variable degree of success.

We can now see why the patient described above had a series of events that could be ascribed to an underlying cause in common, inefficient oxidation. In fact, the symptoms of beriberi, none of which are pathognomonic (strong indicators of that disease exclusively), are so prolific that it can be looked at as the great imitator of disease. Chronic fatigue, heart palpitations, insomnia, abdominal bloating, constipation, panic attacks and many other symptoms, so often regarded erroneously as psychological or referred to as Chronic Fatigue Syndrome are common in America today. The official medical denial of it as an acceptable solution leave the unfortunate patient in limbo without the necessary, relatively simple treatment that is so effective.

The Problems with Compartmentalized Medicine

It seems to me that the patient that I have described represents a failure of perspective in modern medicine. The glaucoma is treated as an eye disease and changes in heart function are seen as diseases of the heart, whereas the two have an identical underlying cause, chiefly in the brain. The patient can be seen as slipping through the cracks in perspective and it carries with it a serious indictment of the present medical model. The surgical approach to the glaucoma was unavoidable and saved the patient’s eye. We know that that kind of glaucoma can build up slowly without the patient being aware.

My point is this: I would be willing to bet that the patient had other trivial symptoms at the time of his glaucoma that would be a reflection of abnormal ANS activity. They could have been so trivial that they weren’t even mentioned to the physician and long forgotten by the patient when serious disease made its appearance. Although the glaucoma could not have been predicted even under those circumstances, at least it would not have been a surprise to the ophthalmologist. In an ideal doctor/patient relationship, the ophthalmologist would be aware of the ANS connection and refer the patient to a colleague who understands this underlying cause. The later development of heart palpitations might have been seen differently as dysfunction in the ANS. Modern heart disease and thiamine deficiency have recently been connected.

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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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“Photo showing acute angle-closure glaucoma which is a sudden elevation in intraocular pressure that occurs when the iris blocks the eye’s drainage channel—the trabecular meshwork.”

Image credit: Jonathan Trobe, M.D., CC BY 3.0, via Wikimedia Commons.

This article was published originally on August 22, 2019.

Rest in peace Derrick Lonsdale, May 2024. 

Recovering From Medically Induced Chronic Illness

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Unexplained or Medically Induced Chronic Illness?

Unexplained. That’s what doctors call chronic illness. Conventional medicine says, ‘learn to live with it.’ Rather than offer a true treatment or cure for these debilitating conditions, they suppress the immune system and offer more drugs for depression and anxiety – none of which are effective. I’m here to tell you that common wisdom is wrong. I know, because my own lucky story proves we can heal from chronic illness. Pharmaceutical insults created my disabling illnesses  – Chronic Fatigue, Fibromyalgia, estrogen dominance, adrenal fatigue, POTS, Graves’ Disease, Hashimoto’s, Bell’s Palsy, infertility and more. I share my journey to offer hope. The doctors were wrong. I have recovered and am once again, healthy.

Early Clues and Pharmaceutical Insults

My childhood had some clues – things I now know predict chronic illness. My lymph glands swelled when I was otherwise healthy. Mosquito bites turned into angry 3” welts. Childhood bunions and hyper-mobile joints suggested leaky gut. All these issues correlate with chronic illness and, seen in hindsight, hint at the difficulties that awaited me in adulthood.

My immune system may have been awry from the start, but pharmaceuticals tipped the scale toward chronic illness. As a teen, I took birth control pills for heavy periods and cramps. When vague symptoms appeared in my early twenties, I asked about pill side effects. The gynecologist laughed at the idea, but I trusted my gut and finally stopped the pill. I felt better in some ways but developed new symptoms.  Sleep became difficult. I was hypersensitive to noise and light and struggled with unquenchable thirst.  The doctor suggested my extreme thirst stemmed from hot weather and salty foods. This explanation didn’t add up to me, but I was young and so was the internet. I had no resources to connect the dots. Today, I recognize that 10 years of hormonal birth control created nutrient deficiencies (folic acid, vitamins B2, B6, B12, C, and E, along with magnesium, selenium and zinc) while also raising my risk for future autoimmune disease.

Recurrent UTIs, Fluoroquinolones, and New Onset Graves’ Disease

A few years later, recurrent urinary tract infections led to many doses of the fluoroquinolone antibiotic, Cipro. Cipro now carries a black box warning and is known to induce mitochondrial damage. My mid twenties also brought pre and post-menstrual spotting and bleeding for 10 days each month. Doctors did nothing for my hormonal imbalance but diagnosed Graves’ disease (hyperthyroidism). Everything about me sped up. Food went right through my system. I was moody. My mind was manic at times. I was unable to rest and yet physically exhausted from a constantly racing heart.

The doctor said Graves’ disease was easy – just destroy the thyroid and take hormone replacement pills for the rest of my life. I didn’t have a medical degree, but this treatment (RAI, radiation to kill the thyroid) just didn’t make sense. Graves’ disease is not thyroid disease. It is autoimmune dysfunction, where antibodies overstimulate a helpless thyroid.

As I studied my options, I learned that RAI could exacerbate autoimmune illness and many patients feel worse after treatment. It was surprising to find that the US was the only Western country to recommend RAI for women of childbearing age. Armed with this knowledge, I declined RAI and opted for medication. The endocrinologist mocked my decision. I was in my 20s and standing up to him was hard, but it marked a turning point and spurred me to take responsibility for my own health, rather than blindly trusting doctors. Recent reports suggest RAI treatment increases future cancer risks. My Graves’ disease eventually stabilized on medication, although I never felt really well. I pushed for answers for my continued illness, but doctors refused to test my sex or adrenal hormones.

IVF and More Damage to My Health

Things turned south again when I was unable to conceive. The supposed best fertility clinic in Washington, DC could not find a cause for my infertility. I’ll save that story for another day, but the short version involved a few years of torment and four failed IVF attempts. The fertility drugs and the stress worsened my overall health considerably.

Our last try at pregnancy was with a specialist who practiced functional medicine. Labs and charting uncovered a clear progesterone imbalance, and also explained my spotting. This simple diagnosis was completely missed by the conventional fertility clinic. A brief trial of progesterone cream resulted in two naturally conceived, healthy pregnancies. Isn’t it remarkable that several years and over $100,000 failed to produce a baby with IVF and $20 of progesterone cream on my wrist did the trick? This could be a cautionary tale about profit motive in modern medicine, but that, too, is a topic for another day.

Years of Conventional Medicine: Thyroid Damage, Autonomic Dysfunction, and Profound Fatigue

I weaned off thyroid medications and felt fairly well after my babies, but my system took a big hit when life brought an international relocation. The move was intensely stressful and my health sunk after we landed half a world away. I had no energy, gained weight, and lived in a fog. The tropical heat and humidity of Southeast Asia felt like a personalized form of torture.

Perhaps the stress of our move left me vulnerable to the reappearance of autoimmune and adrenal dysfunction, as my next diagnosis was Hashimoto’s Disease and adrenal fatigue. Doctors ordered functional medicine tests (hair, organic acids, stool, saliva cortisol and hormones) that identified nutrient imbalances, but their treatment ideas fell short. Despite replacement hormones and supplements by the handful, I remained very sick, with profound exhaustion, brain fog, sleep disruption, pain, and terribly imbalanced sex hormones.

Taking Matters Into My Own Hands

If setbacks have a bright side, it is in the drive to get better. I started studying when my doctors ran out of ideas to treat my illness. Fibromyalgia was the best description of my pain, but I knew conventional medicine offered no help for this condition. I dug into the topic and found the work of Dr. John C. Lowe, who used T3 thyroid hormone for fibromyalgia, and Paul Robinson, creator of CT3M, the circadian method for using T3. CT3M and high daily dose of progesterone cream improved my quality of life in the short term. Near daily bleeding eventually regulated back into a normal cycle and my adrenal function improved greatly.

Postural Orthostatic Tachycardia Syndrome (POTS) was the next bump, bringing a very high heart rate, very low blood pressure, heat intolerance, and extreme sweating on the lightest activity. By this time, I didn’t even ask the doctor for help. My research pointed to salt and potassium, and so I drank the adrenal cocktail and salt water daily. POTS symptoms vanished quickly with this easy strategy, as did the nocturnal polyuria that plagued me for many years.

I steadied after this time. I was not well but functional, despite some major life stressors, including another international move and a child’s health crisis. Even though I managed the daily basics, things like house guests, travel, or anything physically taxing required several days to a week of recuperation.

The Next Step: Addressing Nutrient Deficiencies

The next step in my recovery came thanks to a B12 protocol that includes co-factor nutrients, developed by Dr. Gregory Russell-Jones. Addressing the deficiencies connected to B12 helped and things progressed well until I had a disastrous reaction after eating mussels, which I hoped would raise iron levels. I vomited for hours and stayed in bed for days. I kept up the B12 protocol, but just couldn’t recover. Largely bedridden, and napping 4 hours at a stretch, I got up in the evening only to drive to a restaurant dinner, too exhausted to prepare food or deal with dishes.

Debilitating exhaustion lasted for a month, and then two, with no relief. It was an awful time, but hitting rock bottom proved a blessing in disguise, as desperation turned me back to research. Slowly, I pushed through brain fog and started to review studies on chronic fatigue and fibromyalgia. This led me to a promising Italian study using thiamine for these conditions.

Studying thiamine, it seemed plausible that the allergic reaction to mussels drained my B1 reserves, making it impossible to recover. Inspired by the research, I started on plain B1 at very high doses. To my surprise, I felt better right away. The first dose boosted my energy and mental clarity.

I continued to learn about B1’s benefits, thanks to this website and the text by Drs. Marrs and Lonsdale.  Two weeks went by and thiamine HCL seemed less effective, so I switched to lipothiamine and allithiamine, the forms recommended in Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. WOW. What a difference! Virtually overnight, my gears began to turn, and I felt better with each new day. In a single month, I went from bedridden to functioning well 2 out of every 3 days. I had ideas, I had energy, and I could DO things. The setback days were mild and disappeared entirely after 2 months on thiamine.

At the 2 month mark, I had to travel for a family emergency. My pre-thiamine self would have needed at least a week of rest following this kind of trip, and I expected pain and fatigue as I stepped off the plane. But to my great surprise, I felt well! I remember walking through the airport late that evening and thinking it felt amazing to stretch my legs. Maybe that sounds like an ordinary feeling, but years of chronic fatigue and fibromyalgia conditioned my body to stop, to sit, whenever possible. It was entirely novel to FEEL GOOD while moving! The next day came and I did not collapse, I did not require days to recover and was able to carry on like a normal person. It was a remarkable change in an unbelievably short time.

Recovery From Conventional Medicine’s Ills Came Down to Thiamine

Getting better feels miraculous, but it’s not. The real credit for my recovery goes to experts like Dr. Marrs and Dr. Lonsdale who spread the word about thiamine. Despite years of illness and dead ends, I believed I could heal and I kept trying. Tenacity eventually paid off when posts on this site helped connect the dots between my symptoms and thiamine deficiency. More than anything, my recovery is a story of tremendous luck, as I finally landed upon the single nutrient my body needed most.

The difference between my “before thiamine” and “after thiamine” self is beyond what I can describe.  Birth control, Cipro, and Lupron created nutrient imbalances and damaged my mitochondria, leading to multiple forms of chronic illness in the years between my 20s and 40s. Replacing thiamine made recovery possible by providing the fuel my damaged cells so badly needed. At this writing, I am 7 months into high dose thiamine and continue to improve. I have not experienced any form of setback, regardless the stressors. My energy feels close to normal, the pain is resolving, and brain fog is a thing of the past. My sense of humor, creativity and mental functioning are all on the upswing. I owe thanks to the real scientists who dare to challenge wrong-headed ideas of conventional medicine, and who provide hope for these so-called hopeless conditions. My wish is that this story will do the same for someone else.

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

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This article was published originally on February 6, 2020. 

Medication and Vaccine Adverse Reactions and the Orexin – Hypocretin Neurons

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A paper published in Science Translational Medicine, provides preliminary evidence that the H1N1 Flu Vaccine Pandemrix can evoke immune system mediated damage to the orexin – hypocretin neurons and induce narcolepsy in individuals with a particular genetic variant. The orexin – hypocretin neurons were only recently discovered in the mid 1990s, by two separate research groups, hence the two names for the same molecule. For this paper, we’ll be utilizing the orexin nomenclature.

Initially, the orexin neurons were thought to be involved only in feeding behavior, as damage elicited hypophagia in animals. Soon it was learned that more severe damage to the orexin neurons induced narcolepsy and the orexin system became a key focus in narcolepsy related research. With time, however, it became quite clear that these neurons were involved in regulating a myriad of hormone and neurotransmitter systems and their consequent behaviors. Narcolepsy or rather the ability to sustain wakefulness, is but one of the many functions regulated by the orexin system.

In a previous paper, I touched briefly on the possibility that the orexin neurons might be damaged and have diminished functionality in individuals suffering from post Gardasil side effects. In particular, I suspected these neurons were indicated in post-Gardasil hypersomnia, a derivative of narcolepsy. That may be only the tip of the iceberg. As I soon learned, the hypocretin/orexin neurons are brain energy sensors and may be involved in array of post medication or vaccine adverse reactions. Indeed, they may be central to the ensuing state of sickness behaviors that emanate once an organism becomes overwhelmed.

The Orexin – Hypocretin Basics

Orexin nuclei are located in the lateral hypothalamus, the section of the hypothalamus that is most known for regulating feeding, arousal and motivation. The hypothalamus is the master regulator for all hormone systems and hormone related activity including feeding, sleeping, reproduction, fight, flight, energy usage – basically every aspect of human and animal survival. It sits at the interface between the central nervous system functioning and the endocrine system functioning.

From the lateral hypothalamus, orexin neurons project across the entire brain with its two receptors (OXA and OXB) differentially distributed throughout the central nervous system and even in the body, including in the kidney, adrenals, thyroid, testis, ovaries and small intestine. The orexin neurons also modulate local networks of adjacent neurons within the hypothalamus that in turn influence a myriad of behaviors.

The most densely innervated brain regions include the thalamus, the locus coeruleus, dorsal raphe nucleus, accounting for the hormone’s role in arousal, feeding and energy management. At the most basic level, release of the orexin induces wakefulness. When orexin neurons are turned on and firing appropriately, arousal is maintained. When orexin neurons are turned off, diminished or dysfunctional, melatonin, the sleep promoting hormone, is turned on. The two work in concert to manage wakefulness and sleep.

Orexin receptors are also located in the amygdala, the ventral tegmental area (VTA) and throughout the limbic system, accounting for its role in emotion and the reward system. Orexin directly activates dopamine in the VTA. The VTA is the reward, addiction, and in many ways, the pleasure center of the brain. All drugs of addiction, all pleasurable activities, activate dopamine in the VTA. Through the release of dopamine, here and elsewhere, orexin modulates the motivation to sustain pleasurable activities. When orexin is diminished, not only does dopamine diminish, but the motivation to sustain behaviors decreases and dysphoria increases.

That’s not all. Orexin influences the release of many other neurotransmitters and hormones, several of which are co-located on the orexin neurons themselves. For example, the neuropeptide dynorphin is co-located on orexin neurons. Dynorphin is an endogenous opioid involved in the perception of pain and analgesia. It has dual actions that can both elicit analgesia or pain depending upon dose and length of exposure. Stress activates dynorphin. Dynorphin then inhibits orexin firing by as much as 50%. Illness is a stressor, a vaccine is a stressor, either could activate dynorphin and inhibit orexin. After the initial activation of dynorphin, and the ensuing decrease in orexin, the presence of chronic stressors and chronic pain could begin a continuous feedback loop of diminished arousal, and increasing pain.

Other Neurochemical Connections

  • Consistent with orexin’s role in arousal, orexin neurons contain glutamate vesicles. Glutamate is the brain’s primary excitatory neurotransmitter. Drugs that increase glutamate, also increase orexin. Drugs that block glutamate, via its NMDA receptor, decrease orexin. Common migraine medications block glutamate and thereby may also diminish orexin.
  • Serotonin and norepinephrine decrease hypocretin/orexin firing (suggesting if one is concerned with hypersomnia, anti-depressants might not be a good option).
  • As one might expect, orexin neurons are inhibited by GABAα agonists – sedatives. From a women’s health perspective, consider that cycling hormones would also affect orexin neurons through the GABAα pathway. Progesterone is a GABAα agonist – a sedative, while DHEA and its sulfated partner DHEAS are GABAα antagonists, anxiolytics that block GABAα, reduce sedation, and thereby increase anxiety and wakefulness. There may be a cyclical nature to orexin firing that has yet to be investigated.
  • The hypocretin/orexin neurons also influence galanin, a GI and CNS hormone that seems to inhibit the activity of a variety of other neurons in those regions.

These are but a few of the brain systems that the orexin neurons touch in some way or another. Damage to this system would have serious health consequences by initiating a cascade of biochemical changes within the brain and body. Many of which, we have yet to fully understand.

How Might the Orexin Neurons Become Inhibited?

Quite easily, apparently. In addition to the orexin’s vast interconnected pathways with a myriad of neurotransmitters and neuropeptides, the orexin neurons act as energy and activity sensors with some unique intracellular mechanics that make them especially sensitive to the changing dynamics of the extracellular milieu. Disruptions in ATP, glucose and temperature, elicit reactions in orexin functioning.

Orexin neurons require as much as 5-6X the amount of intracellular ATP to maintain firing, and to maintain a state of wakefulness or arousal. This extreme sensitivity to reduced ATP makes the orexin neurons uniquely positioned to sense and monitor brain energy resources, early, before ATP levels become critical in other areas of the brain. The orexin neurons cease firing when ATP stores become low, thereby allowing the reallocation energy, perhaps to those cells required for survival, breathing and heart rate. As Hans Selye observed many decades ago, one of the first, and indeed, most consistent of the sickness behaviors, no matter the disease, is lethargy, fatigue and sleepiness. Orexin is at the center of this behavior.

Orexin neurons react to extracellular glucose levels, though perhaps not as one might expect. When extracellular glucose levels are high, orexin neurons stop firing via what is called an inward rectifying potassium (K+) channel that is ATP dependent. That means that when extracellular glucose is high, intracellular ATP is allocated to open K+ channels and flood the cell with the inhibitory K+ ions. K+ hyperpolarizes the cell, prohibiting it from firing. This mechanism reminds me of Dr. Peter Attia’s talk about the nature of Type 2 Diabetes and our approach to treatment. He proposes that the body’s metabolic response – the conservation of energy – to Type 2 Diabetes is not something aberrant but is exactly as it should be with a disease state. We’re just not treating the correct disease state.

Another way we can shut down the orexin neurons is via increased temperature. The orexin neurons are very sensitive thermosensors. Increased temperatures shut down orexin firing via the inward K+ flow. Again, this is consistent with sickness behaviors and the reallocation of resources.

Orexin – Hypocretin Neurons in Migraine and Seizures

Diminished orexin has been linked to migraine and seizure activity. With migraines specifically, orexin may contribute to the early warning, hours to days, of impending cortical disruption via changes in feeding and sleep patterns that often precede migraine onset. Orexin may also be linked to the pre-migraine aura mediated by changes in brain electrical activity that prelude the migraine pain itself by minutes, called cortical spreading depression or more appropriately, cortical spreading depolarization – the massive spreading change in ion balance of the neurons. Initially the wave is excitatory, neurons are firing, but that is soon followed by a period of neural silence. Finally, orexin is also connected to the vasodilation of the trigeminal nerve, the nerve responsible for migraine pain. These findings have led some to call orexin a migraine generator.

Diminished cerebral spinal concentrations of oxerin have been found in patients generalized tonic-clonic seizures. Conversely, in rodent studies, injections of orexin elicit seizure activity. Despite the somewhat contradictory findings in seizure activity versus migraine activity, it is likely that the orexin system is involved both disease processes.

Pulling it all Together: Orexins Monitor and Mark Disruptions in Brain Homeostasis

Here’s where it gets really interesting. Although some have argued orexin, particularly diminished orexin functioning, is the cause and culprit of disruptions in brain homeostasis, leading to narcolepsy, excessive sleepiness, migraine, seizures and other diseases, I think this system represents merely a marker of a disease process. I think the orexin system is the stopgap, the final barrier of disrupted cellular energetics, of mitochondrial function. Mitochondrial ATP is the key.

When we consider orexin’s role in migraine, in particular, we see clearly how environmental changes (diet, stress, illness, medication/toxin exposure) can lead to changes in the extracellular milieu where orexins reside. The orexin sensors adjust to these changes, mostly by reducing neural firing in attempt to counteract damages. The reduction in orexin then elicits the premonitory phases of the impending brain disruptions, sleep and hypophagia – the sickness behaviors. If it progresses, the massive waves of electrical disruption ensue, and migraine, perhaps even seizures are evoked. When the extracellular environment become chronically disrupted, so too does the diminishment of orexin activity, thereby initiating a perpetuating loop of dysregulated brain activity. We can hypothesize that similar progressions exist with disease processes marked by aberrant electrical activity, such as epilepsy.

We know that mitochondrial dysfunction is often generated by genetic polymorphisms and can predispose individuals to an array of seemingly unrelated conditions like migraine and fibromyalgia, dysautonomias and cognitive deficits. At the root of the dysfunction is a error of some sort in mitochondrial energy processing – ATP.

What has become increasingly clear, is that the production of cellular energy, can be disrupted environmentally, by diet, illness and exposures, if co-factors necessary for the production ATP like thiamine are diminished. It is via diminished ATP production, that I think some medications and vaccines evoke adverse reactions in some individuals. The orexin system, because it is so exquisitely sensitive to changes in cellular energy, is our warning system; first by subtle changes in neurochemistry, then by changes in arousal and feeding behavior, and finally, by an all-out reallocation of resources – excessive sleeping. If ATP remains deficient chronically, and an individual is so disposed, then the cortical misfiring we see in migraine and seizure ensues, along with autonomic dysregulation and the syndromes associated therewith. It is not the orexin – hypocretin system that is at root of many of these diseases, but rather, the causes are deeper yet and reside with mitochondrial health.

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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 January 29, 2014.

Endometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration

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I am sharing my health story in the hopes that someone can offer assistance. I had stage 4 endometriosis for years before it was diagnosed. On top of that, I have had reactions in antibiotics, including fluoroquinolones and was given Lupron. Each drug destroyed more of my health. I am currently bedridden, in pain and unable to function. I have lost hearing in my right ear, have Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency, hypokalemia, electrolyte imbalances, IBS, MCS, Ocular migraines and recently, have been diagnosed with dysautonomia. My body feels like it is disintegrating. We believe that everything is related, that I have mitochondrial issues at the root of these illnesses, but to date, no one has been able to put the pieces together. With the help of my husband, I have put together my health history. We are looking for input.

Early Warning Signs

1985: late summer, I was hit by car while riding bicycle. I was banged up really bad and definitely had head injury.

1998: started feeling off, not sure yet at this point still very young

2001: birth of my first daughter. I developed severe preeclampsia and had an emergency C-section three days later. My daughter was 6 weeks early and spent two weeks in the intensive care unit.

2002-2003: I felt off at times and did go to GP on several occasions. I had pain shot to my back. I am not sure what it was but it took the pain away. I also kept saying just didn’t feel well. I felt off but nothing was found.

2005: the birth of our son and second C-section. I was on bed rest last three months of the pregnancy. I was given an antibiotic for some reason. I do not remember. I had a reaction to it and turned orange. The doctor gave me something else to counter the effects of the antibiotic and my color returned to normal. It was a normal birth.

2006-2007: I was still in pain. The pain moved to the abdominal area. I developed bowel issues, had and ovarian cyst. I saw gastrointestinal physician who did scans and found a thickening of the lining of uterus. He referred us back to the gynecologist who did D&C in 2007 and said I had very minuscule amount of endometriosis.

2008- 2009: still seeing OB for pelvic pain, also seeing multiple other doctors including a neurologist, internist, and surgeon. Everyone kept saying same thing: ‘Your fine. It’s in your head.” They wanted to put me on mood enhancers. I tried lorazepam and felt terrible on it, so I stopped after two weeks.

The Lupron Disaster

September 2009: I started doing Lupron injections from gynecologist. She was very forceful with me and stated “if you don’t do these injections I can’t help you.” She said it was the only way they could know if the pain was below the belly or above. I agreed reluctantly, but at that time still thought my doctors had their best interests in me. After the first injection, my doctor called at home on a Saturday to see how I was feeling. I responded I was already in pain, but it has now quadrupled and I feel like an old person. Every bone in my body hurt.  I couldn’t believe the amount of pain I was in. She said I had to get all 6 injections if it were to be able to help me.

At that time, my husband because of work only went to a few of my appointments. I soon began to have him go with me because I felt I was getting the run around.

Hearing Loss Post-Lupron: Let’s Add Fluoroquinolones and Steroids to the Mix

2010: the last injection was in February. I began to lose my hair. I had memory loss, stabbing and taser sensations in head. I was still getting pains in abdomen area. In September, I went in for ear pain. The ENT said it looked like a scratch, so he gave me fluoroquinolone drops. I had also taken other fluoroquinolone antibiotics for yeast infections earlier in the year. In October, I had sudden sensorineural hearing loss in the right ear. Within an hour, I called my husband told him my hearing was acting weird. I went totally deaf in my right ear, 8 months after my last injection of Lupron. My local ENT immediately gave me a shot of cortisone (I was able to still walk and drive). It all went crazy when my ENT put me on a large dose of oral prednisone for 14 days. Everything in my body went nuts. I was rolling out of bed, holding on to the walls to help me walk. I totally lost my balance. The oral prednisone really did a number on my head.  I had done genetic testing through 23andMe and our doctor upload the report to a reader called Opus23. It said that I should never take prednisone.

I went to Stanford Medical and saw top ENT and received three cortisone injections into the right ear drum. Had a 50/50 chance for recovery and for me it didn’t work. I left Stanford with them telling me they still don’t have all the answers yet when it comes to sudden hearing loss. They thought it was some sort of viral infection that attacked the ear drum and deafened the ear. After the hearing loss. I had three ER visits. This is when I first started having low potassium. I felt like I was about to pass out. I was still driving at this time, I didn’t know what to think.

2011 -2012: I began seeing a naturopathic physician. I also did a trip down to LA to the House Ear clinic to see some specialist regarding her hearing loss. They couldn’t help either. I left my current OB and started seeing the physician who was filling in. I ended up doing a partial hysterectomy with her after finding a growth at one of my numerous ER visits that year. I was still working and a full-time mommy, while dealing with massive pain in my lower abdomen and now starting to deal with multiple autoimmune diseases including: Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency. In addition, a lot of my minerals and vitamins were off at that time. I suspect this was beginning of my dysautonomia. I also began seeing an endometriosis specialist at Stanford.

Was it Endometriosis All Along?

2013: On January 31st, I had laparoscopic surgery to clear the endometriosis. I had stage 4 endometriosis which took my appendix. The physician said my body was littered with endometriosis. He even checked up in my heart cavity to make sure no endometriosis had made its way up to the heart. Before the surgery, I was talking with the anesthesiologist and telling him about my hearing loss and my low potassium. That is when he stopped the surgery and I had to take a stress test. We left and went to Palo Alto heart center and did a stress test I fasted for 24 hours and then they had me go do a stress test on a treadmill on an empty stomach. I did it no problem and went back to the surgery center. That is when they did the laparoscopic surgery and found stage 4 endometriosis.

Also, I want to point out that we didn’t find out until much later that during the course of the endometriosis surgery, they had left surgical clips and suturing material in me. We discovered this at one of our many ER visits. The OR report from our doctor says nothing about these things being left inside of me. I believe this is an additional pain I have on top of the other complications in my abdomen area. Nothing like having a wad of surgical clips throughout my abdomen and suturing material left inside my already struggling body. We are trying to get these removed, but no surgeon will take my case.

Mitochondrial Damage and Autonomic Disintegration

April that year, I had another ER visit. I lost all bodily functions. My potassium was severely low. I would go to the ER in 2013 many more times.

2014: I had to stop working totally this year. I tried to come back and assist a friend of mine just being her loan officer assistant but the neurological pains and crazy foggy brain I was experiencing was just too much. Something that was so easy for me years earlier, I was now having trouble just doing basic loan officer task at this point. Strange neurological pains were becoming a normal. I stopped driving this year also. It was just getting to scary for me to continue. I continued to go to ER for multiple visits

2014- 2017: I went to the ER over 50 times for various reasons: heart pains, chest pains, shooting stabbing pains throughout my entire body. I almost always had low potassium. Over these years, we spent our life savings and pulled out a $100,000 from my husband’s 401k, which we spent on various treatment plans. We have traveled as far away to Philadelphia looking for answers. We even gutted our house when we were told at one time it must be mold that is killing me. We lived in a borrowed 5th wheel while my husband put our house back together. There have been numerous days where I felt I couldn’t go on one more minute. I felt like death was right around the corner.

In 2015 one of our doctors after reading my genetic report thought he found a breakthrough with a patient that had hypokalemia and Sjogren’s syndrome. He provided me a copy of the study they did on a girl with very similar symptoms to mine. He had our local compounding pharmacy mix a solution called Shohl’s. I took the solution after my doctor assured me I would be ok. Well, I tried it almost within in minutes I was convulsing and went into tachycardia. My husband called 911 ambulance took me to the ER. In route to hospital paramedic gave me nitroglycerin. I was monitored for several hours and eventually went home. During this time had been staying at my mother-in-law’s house for about 6 months because we weren’t sure at this point if something in our house was making me so sick. This was a very stressful time for me at this point we have no idea what’s going on and what’s causing this.

We did have some relief in 2017 when our local naturopathic doctor was able to get a new treatment called UBL or ultraviolet blood irradiation. I had about 6 months where I was feeling off, but having somewhat good days where I could semi-function. My viral count has been very high during these years, EBV, CMV, HHV6, etc., and possibly Lyme. If I push myself, I will crash for hours sometimes days until I start to get any strength back just to walk to the restroom.

Next, I went in for a completely different treatment called prolotherapy. I got one injection into my shoulder, and just like that my body reverted back to like I was before the UBL treatments. I was worse again. It was very strange my body reacted like that.

2016: I was diagnosed with dysautonomia by another specialist, an electrophysiologist cardiologist. I have several of the sub symptoms of dysautonomia including: postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS), dizziness, vertigo, fainting, fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with gastrointestinal system, nausea, disturbances in visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, disrupted sleep patterns, temperature regulation problems, concentration and memory problem, poor appetite and overactive sense, especially when exposed to noise and light. We also met with a dozen or so other specialists. None were able to help.

I have multiple tears in both hips worse on right side. Multiple torn areas in the pelvic floor also.  Surgery is out of pocket and we have not been able to fly back and have surgery to repair those tears and hips yet as of 2019.

2018- 2019: I went to the ER only three times in 2018 and so far only three times in 2019. We try not to go because we know they never find much. I only go to be reassured that my vitals are still strong when I’m feeling at my worst. I have been denied disability. I had a neurocardiogenic seizure in the courtroom with judge and she still denied me. I have one last appeal that I am waiting on. I am not very hopeful that will go through. At this point, the dysautonomia, fibromyalgia/ chronic neurological pain and the low potassium are what are the hardest things for me to deal with. As of right now, we are concentrating on rebuilding my mitochondrial cells in hoping I can reverse some or most of the damage I think was a direct cause from the Lupron injections.

I was also on bio-identical progesterone creme from around 2012 to 2018. Then, in middle of 2018, my ND wanted me to try the bio-identical that went off the lunar moon cycle. It was a separate estrogen and progesterone creme in a plastic push-up type applicator. She said she was looking into it and thought it might help. Well, I tried it and had terrible side effects, I think most likely from the adding in the estrogen. After second month, I was having terrible stomach pains. I looked four months pregnant and was begging my husband to take me to the ER. The pain was worst at the part of the cycle where I took the estrogen only. I felt like she was going to die. In the past, I was always high in estrogen. I am not sure, but as soon as I introduced in that estrogen, it threw me out of whack terribly. I stopped that in November of 2018.

This is where I am now: in pain, unable to work or care for my children. My husband is my full-time caregiver. He takes care of our kids, shops cooks, does everything I used to do plus works his full-time job. I couldn’t do this without him. The doctors have run out answers. I believe it was the endometriosis all along, made infinitely worse by Lupron and the various rounds of antibiotics, including fluoroquinolones. The only way I can maintain my potassium levels is through huge daily doses. Otherwise, I slide into hypokalemia. We have a standing order at our local hospital to measure my potassium whenever I suspect it is low. We have sought treatment from dozens of specialists and spent our entire life savings and I am no better than I was 10 years ago. In fact, I am worse. Over the last 8 years, we have been supplementing with vitamins and minerals to try and repair the damage done to my mitochondria by the Lupron and the fluoroquinolones. Some things help and others do not. We are at wits end and do not know where to turn for help. Below is a list of supplements that I currently take.

Supplement List

Upon waking:

  • 600mg potassium,
  • 1 1/4 grain Naturethroid

Breakfast:

  • 3 200mg potassium. Daily total 1200mg
  • 1 Chewable Hydroxo B-12
  • 1 COQ10 100MG
  • 1 Biotin 10,000mcg chewable
  • 1 Chromium picolinate 200mcg chewable
  • 1 Desiccated adrenal from Standard process
  • 1 magnesium malate 100mg
  • 1 Thiamin 50mg
  • 1 Mitocore – it is like a multiple vitamin
  • 5 grams vitamin C, mixed with juice, plus I add Lugol’s iodine, colloidal silver, lymph drain and trace mineral mix.

Mid-morning:

  • 3 200mg potassium again – daily total 1800mg
  • B12 shot, a 100iu syringe

Lunch:

  • 3 200mg potassium, daily total 2400mg
  • 1 vitamin A 10.000iu
  • 1 vitamin K 90mcg
  • 1 Lugol’s iodine plus
  • 1 nettle leaf cap 400mg
  • 1 Monolaurin 600mg
  • 2 L-lysine 1000mg
  • 1 thiamin 50mg
  • 1 magnesium malate 100mg
  • 1 more Hydroxo B12

Diner:

  • 3 200mg potassium, daily total 3000mg
  • 1 thiamin 50mg
  • 1 milk thistle 150mg
  • 2 L-lysine 1000mg
  • 1 DHEA 25mg
  • 1 magnolia bark 450mg
  • 1 Digestive enzymes
  • 1 Dr. Berg Hair formula.
  • 1 L-carnitine 250mg

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Image: Maximum Speed of Raphael’s Madonna, Salvador Dali, 1954.

Posted originally on Aug 20, 2019.

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

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 Gordon Johnson from Pixabay.

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

Post Accutane Dysautonomia?

8.5K views

I am a healthy 19 year old athlete, or at least I thought I was, until I began having these weird episodes where I will begin sweating, but have the chills too. My heart races and I feel spacey and out of it. It feels as though the blood is just rushing from my head to body. The episodes can last from a few minutes to a few hours and seem to come out of nowhere. The doctors that I have seen cannot find anything wrong with me, but I know this is not normal. I have also had some weird lab results, shown below.

Childhood History

I have no major medical history except for a year of amoxicillin for ear infections and Miralax for constipation as a toddler. Around the age of about 11, I developed facial tics that were resolved with diet change (gluten free) and magnesium.

I have played soccer since the age of 5 years old. I would continuously head the ball, to the point where the parents would jokingly take bets on how many times I would head the ball. Around my sophomore year in high school, I had some back pain and a chiropractor said I have mild scoliosis with a Scheuermann’s presentation. This is basically a benign flattening of the vertebra. He said exercise was important. I changed my mattress, exercised regularly, and the back pain went away. The only other thing that I deal with regularly is altered sleep. I can fall asleep OK but I wake up several times during the night and have trouble falling back asleep.

Acne, Antibiotics, and Accutane and First Episodes

During my senior year in high school I developed severe cystic acne. I tried some dietary interventions, but nothing seemed to help. I did six weeks of doxycycline, which did nothing. I then went on my first round of Accutane for about six months in the spring of 2022. The following fall of 2022, the acne returned. I went back on Accutane for another five months. I discontinued the second round of Accutane at the end of May 2023. Then, one month later, at the end of June, I had my first episode of sweating, chills, heart racing, and feeling of spaciness. It seemed to come out of nowhere. We thought it was viral. A few friends developed Epstein Barr in May and so I thought maybe I had it too, as I was in close contact with them. About a month later, I had another episode and then about two more this past summer. They seemed to be lessening in intensity and duration.

This last fall, we had bloodwork done (Figure 1.). My labs showed that I have exposure to EBV, Lyme and a couple other viruses, which according to the doctor, were not extremely elevated. My albumin, the liver enzyme AST and my progesterone were also high, while my RDW (red cell width) was low at 11.7 (12.2-15.3). My vitamin D was barely above the reference range at 33.3ng/mL (32-100), and strangely my thiamine was super high at 25.0 ng/mL (2.7-10.1) even though I do not supplement. Finally, there was evidence of a lingering respiratory infection Chlamydophila pneumoniae.

Post Accutane Dysautonomia
Figure 1. Recent labs.

While these numbers were not a concern to the physician, these episodes I have are not normal and so something is going on.

College and More Episodes

Despite all of this, I entered college away from home and felt ok for two months. Then the night before Halloween, out of nowhere, I had another episode. This time it lasted almost two hours. I was sweating, had chills, and my heart was racing. When I feel it coming on, I have to lay down. It feels like the blood is just rushing from my head and body. This time my hands also sort of cramped/seized up, which was scary. I was not doing anything out of the ordinary. I was preparing to go on a road trip. The following night I had another smaller episode. This one didn’t last more than 10 minutes.

Why Is This Happening?

No one seems to know why this is happening. Are the abnormal labs really of no concern? How about the elevated thiamine despite not supplementing? Is there something going on there? Could I possibly have an altered thiamine transporter system or some other genetic defect that makes it difficult for me to use thiamine? Could my symptoms be spinal related? Is my autonomic nervous system altered after coming off two rounds of Accutane? This is very scary to me as a 19 year old. I would like to learn everything I can from you and all the people here sharing their stories. I do not want to get worse.

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, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.   

This story was published originally on December 7, 2023. 

Health Shattered By Poor Diet and Conventional Medicine

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My health has declined over the last few decades, to the point that I am totally disabled and haven’t driven in 10 years. I have severe POTS with high blood pressure while sitting and laying down. Previously, it was low. I am not able to stand up as my heart rate goes too high and I feel as though I’ll pass out. I have coat hanger pain, jaw tension, and headaches daily. I am very irritable and impatient. Emotional outbursts crying spells, depression. I feel like I am a completely different person. I am in survival mode. My body cannot shift out of sympathetic dominance. All of this has developed over the last 20 years; a progressive decline until everything hit the fan.

I thought I had a relatively healthy childhood and into my early 20s. I did have mono in 7th grade. Looking back though, I ate poorly growing up and did a lot of crazy starvation diets. I also consumed a lot of alcohol in my later teens through my early 20s. I stopped drinking in 1994. However in 2006, I started drinking on and off again and the night I had the severe vertigo attack, I had been drinking. Since then I haven’t touched alcohol.

My mom passed away when I was 22 and I had my first child at 23, which was a C-section. At 26, I developed rosacea. This was really my first health problem. At 27, I was divorced (1993). I remarried a year later and had another child at 30 years old. Three months later, I had my gallbladder removed. With all of this, I was still active and healthy with only rosacea that would come and go, but it would get really bad on occasions and was very distressing. This was until 2007, when life stressors, poor diet and illness caught up with me.

Unending Vertigo and the Protracted Decline of Health

I started working again in 2000 after we relocated to Arizona. I was a preschool teacher, a wife, and was raising my two sons. I had a very full schedule. I was always a high achiever. In 2004, I opened my own school with another teacher. Things got even more stressful. In January 2007, I had a very emotional falling out with my father and a couple weeks after that I was diagnosed with viral pharyngitis. Within a couple weeks of this diagnosis, I was thrown out of bed with the worst vertigo you can ever imagine. This went on for three days and I was unable to walk for over two weeks. As things were improving, the dizziness never did go away. I sought out multiple practitioners, including neurologists and audiologists, but none were able to help.

I went back to work but I was never the same, having to deal with constant dizziness and feeling of being off-balance. In October of 2007, I wound up in the ER with a resting heart rate of 160. This had come on out of nowhere over the day and by the evening I was very frightened. They gave me lorazepam and sent me on my way. I continued with the constant dizziness and then the anxiety and panic attacks started. My GP gave me a script for benzodiazepine and offered an anti-depressant. I tried the antidepressant and I had a bad reaction. I  felt completely numb. I couldn’t laugh smile or have any sort of reaction. That was after just try half a tablet. I never tried that again.

In 2009, I had an ankle injury and was wearing a boot for most of that year. In October, of that year I ended up having a surgery on it. What was interesting is that I was not experiencing much of the dizziness for most of that year. It wasn’t until a couple months later when I had a sudden onset of the dizziness during my physical therapy session. So the dizziness had come back and the anxiety and panic attacks were getting worse. In September 2010, I basically collapsed at work. It was about four or five days later at home, I experienced a severe shift of my energy. I was severely fatigued and now was experiencing POTS.

Is it Lyme? Maybe. Maybe Not.

November 2010, I was diagnosed with Lyme, however, my test was not conclusive. The Lyme literate doctor said my immune system was so weak that it was hard to get a positive result. He diagnosed me clinically. This set me off on a seven year journey of protocols that included benzodiazepines, two IV chest ports, supplements, herbs, homeopathics, bio-hormones, coffee enemas, detoxification therapies, chelation, IV and oral antibiotics, Flagyl, anti-fungal drugs, and every diet imaginable. You name it I did it. We had spent our life savings and I was still disabled and incredibly ill.

I became addicted to the benzodiazepines that he prescribed. He never told me about how addictive they were. I was on them for three years and they made me so much worse! I tried to come off of them several times. They turned me into a 3 year old. I was so fearful I couldn’t leave my bedroom even to cross the hall into bathroom. Finally, in 2014 I was able to kick the addiction. It took me six months of liquid titration.

As If Things Weren’t Bad Enough: Cancer Too.

Also in 2014, I had a huge fibroid and had a procedure called UFE ( uterine fibroid embolization ) to cut off blood supply so it would shrink. I know now I had severe estrogen dominance.

In 2017, I hit menopause and stopped menstruating. I was using sublingual progesterone at the time. The doctor also had me on hydrocortisone for adrenals and a time-release thyroid supplement. These supplements never helped and only made me worse. I was in such bad shape. I wasn’t sleeping for 3 to 4 days at a time and then when I would sleep it was only couple hours. This sleep regime went on all year.

In May of that year, I woke up one morning and left breast had shrunk significantly overnight!! The doctor I was seeing, had me come in. He physically examined me and felt that it was not anything to worry about. He said that I needed to detoxify my breast because it was probably blocked lymph. He told me to do skin brushing on it. I was in such bad shape that I wanted to believe him but I was so frightened. In October, I saw a different doctor and she said I had to get a biopsy. It was cancer. I did not see an oncologist. I did not have any lymph nodes removed or chemo radiation. I just had a surgeon remove it. I left the rest up to God. At this point, I could not endure anything else mentally or physically. The pathology report indicated the cancer was 98% estrogen driven.

A Dysautonomia Specialist Prescribed More Antibiotics

In 2018, I tried one more doctor. He was an autonomic dysfunction doctor and his protocol was quite simple. It was focused on lowering inflammation in the brain and body and balancing gut bacteria. At this point, I had suffered from chronic constipation for at least 10 years, on top of POTS and all of the other health issues. I was put on fish oil, olive oil, Rifaxamin and Flagyl for the possible SIBO and a vagus nerve stimulator. He told me not to use any other supplements of any kind. He claimed that most all supplements were fraudulent and using them would interfere with progress. I could not finish the Flagyl. I was feeling severely agitated and I thought it was due to the drug. I took most of it though. He assured me that the Rifaxamin was very safe and that they actually have renamed this antibiotic as a eubiotic. I did see my rosacea clear up. I had read some research and trials were they used Rifaxamin for rosacea and had a very positive outcome. So over the last 2 1/2 years I’ve been faithful on this protocol. It seemed like I had periods of time where I was able to stand up longer and do more around my house but I always relapsed. I was using the Rifaxamin on and off as per his direction for 10 days at a time. This year he put me on it indefinitely to use daily. I’ve been on it now for 8 months straight, but in July I started to go downhill very fast. I was having a decent spell able and had been able walk around for a a bit, do some limited chores and even able to be out in the pool, but one night my heart just went crazy and began to race. The vertigo came back too. I have been bedridden again since.

Discovering Thiamine Deficiency

After going back to doing some research, I came upon Dr. Lonsdale and Dr.  Marrs’ book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. I am thinking thiamine deficiency could be a piece of my puzzle. After reading one of Dr. Lonsdale’s articles on high B12 correlating with thiamine deficiency, I remembered two of my B12 tests. One in 2014, where it was 2000 and one in 2017 was 1600. The max upper range is 946.

Although my ill health was progressive at first, over time, everything has just become unbearable. I have been bedridden now for 10 years. The POTS symptoms are severe and I think I have the hyperadrenergic POTS. My blood pressure is very high when both sitting and laying and when I stand up, both my blood pressure and heart rate climb. I feel as though I’ll pass out. As I mentioned previously, I also have coat hanger pain, jaw tension, and headaches daily. I am very irritable and impatient. Emotional outbursts crying spells, depression. I feel like I am a completely different person. I am in survival mode. My body cannot shift out of sympathetic dominance. I am hoping to get some direction and advice on using thiamine to possibly help my condition.

Supplements, Medications, and Diet

Upon learning about thiamine and mitochondria, I stopped taking the Rifaxamin about two weeks ago. Below is a list of supplements I currently take and some information about my diet.

  • Magnesium hydroxide, Magnesium glycinate, 100mg, magnesium citrate, 100mg and some magnesium oxide in an electrolyte drink, in some variation for the past 3 years
  • 3000mg daily (6caps) DHA 500 by Now Foods for past 3 years
  • Liver capsules 4 daily past 3 months
  • Camu Camu powder, a natural Vitamin C, 100-300 mg just started about two weeks ago
  • Rice bran 1 tsp before bed started two weeks ago
  • Bee pollen 1/2 tsp daily, started 3 months ago
  • I follow gluten free diet. I eat beef, chicken, raw liver, raw dairy, raw kefir, cheese, bone broth, some fruit, oatmeal and some vegetables like tomatoes, green beans, onions.

Since learning about thiamine, I have begun using Thiamax but am having a rough time of it. I took my first half dose (50mg) of Thiamax on December 26, 2020 and continued that dose through December 31st. It seemed to increase my fatigue more than my normal, which is already pretty debilitating so I switched to 50mg thiamine HCL on January 1st. By January 3rd, I had a big crash. Hoping to minimize these reactions, on January 4th I took 25 mg thiamine HCL with 12 mg Thiamax in two divided doses. The next evening, however, I rolled over at 2 AM and my heart rate went crazy. I was shaking and went into a panic attack. It took hours to settle down. I haven’t had anything like this in quite a few years and I can’t imagine this would be from the tiny doses of thiamine I’ve been taking. I also took 600mcg of biotin that night at around 6pm. This was for a longstanding fungal infection. The biotin may have contributed to my reaction, but I do not know. I skipped the thiamine and biotin the next day and was able to sleep. I have resumed the thiamine once again and so far, I am tolerating it. I understand that people with chronic health conditions have difficulty adjusting to thiamine and I am trying my best make it through to the other side, but these reactions are difficult to manage. Any input from others who have been through this would be appreciated. I desperately want to recover my health.

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 (El Caminante) from Pixabay.

Rest in peace Tawnya, 2023.

This story was published originally on January 11, 2021.  

How Can Something As Simple as Thiamine Cause So Many Problems?

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I have read a criticism that thiamine deficiency is “too simple” to explain the devastating nature of the post Gardasil illnesses or the systemic adverse reactions to some medications. Sometimes, it is the simple and overlooked elements that are the most problematic.

Understanding Thiamine’s Role in Complex Adverse Reactions – The Limbic System

The lower part of the brain, called the brainstem, is a like computer, controlling the most basic aspects of survival, from breathing and heart rate, hunger and satiety, to fight or flight and reproduction. This computer-like function within the brainstem is called the autonomic system (ANS). The ANS together with the limbic system act in concert to regulate our most basic survival functions and behaviors. Both require thiamine to function.

Postural Orthostatic Tachycardia Syndrome or POTS , a type of dysautonomia (dysregulation of the autonomic system) seems to be the among the commonest manifestations of the Gardasil effect. Many cases have been diagnosed already, while others present all of the symptoms but have yet to receive a diagnosis. Dysautonomia and POTS have also been observed with adverse reactions to other medications, as well. Dysautonomia and POTS, at the most basic level, represent a chaotic state of the limbic-autonomic system. Let me explain.

Fragmented Fight or Flight

The brainstem autonomic system together with the limbic system enable us to adapt to our environment, presiding over a number of reflexes that allow us to survive. For example, fight-or-flight is a survival reflex, triggered by perception of a dangerous incident that helps us to kill the enemy or escape. This kind of “stress event” in our ancestors was different from that we experience today. Wild animal predators have been replaced by taxes/business deadlines/rush hour traffic etc. These are the sources of modern stress. The beneficial effect is that the entire brain/body is geared to physical and mental response. However, it is designed for short term action and consumes energy rapidly. Prolonged action is literally exhausting and results in the sensation of fatigue. In the world of today where dietary mayhem is widespread, this is commonly represented as Panic Attacks, usually treated as psychological. They are really fragmented fight-or-flight reflexes that are triggered too easily because of abnormal brain chemistry.

Thiamine and Oxidative Metabolism: The Missing Spark Plug

Our brain computers rely completely on oxidative metabolism represented simply thus:

Fuel + Oxygen + Catalyst = Energy

Each of our one hundred trillion body/brain cells is kept alive and functioning because of this reaction. It all takes place in micro “fireplaces” known as mitochondria. Oxygen combines with fuel (food) to cause burning or the combustion – think fuel combustion engine. We need fuel, or gasoline, to burn and spark plugs to ignite in order for the engines to run.

In our body/brain cells it is called oxidation. The catalysts are the naturally occurring chemicals we call vitamins (vital to life). Like a spark plug, they “ignite” the food (fuel). Absence of ANY of the three components spells death.

Antioxidants like vitamin C protect us from the predictable “sparks” (as a normal effect of combustion) known as “oxidative stress”.  Vitamin B1, is the spark plug, the catalyst for these reactions. As vitamin B1, thiamine, or any other vitamin deficiency continues, more and more damage occurs in the limbic system because that is where oxygen consumption has the heaviest demand in the entire body. This part of the brain is extremely sensitive to thiamine deficiency.

Why Might Gardasil Lead to Thiamine Deficiency?

We do not know for sure how Gardasil or other vaccines or medications have elicited thiamine deficiency, but they have. We have two girls and one boy, tested and confirmed so far. More testing is underway. Thiamine deficiency in these cases may not be pure dietary deficiency. It is more likely to be damage to the utilization of thiamine from as yet an unknown mechanism, affecting the balance of the autonomic (automatic) nervous system. It is certainly able to explain POTS (one of the many conditions that produce abnormal ANS function) in two Gardasil affected girls. Beriberi, the classic B1 deficiency disease, is the prototype for ANS disease. Administration of thiamine will not necessarily bring about a cure, depending on time since onset of symptoms, but it may help.

Thiamine Deficiency Appetite and Eating Disorders

Using beriberi as a model, let us take appetite as an example of one of its many symptoms. When we put food into the stomach, it automatically sends a signal to a “satiety center” in the computer. As we fill the stomach, the signals crescendo and the satiety center ultimately tells us that we have eaten enough. Thiamine deficiency affects the satiety center, wrecking its normal action. Paradoxically it can cause anorexia (loss of appetite) or the very opposite, a voracious appetite that is never satisfied and may even go on to vomiting. It can also shift from anorexia to being voracious at different times within a given patient. That is why Anorexia Nervosa and Bulimia represent one disease, not two.

Thiamine Deficiency, Heart Rate and Breathing

The autonomic nervous system, responsible for fight or flight, regulates heart activity, accelerating or decelerating according to need. So heart palpitations are common in thiamine deficiency. Its most vital action is in control of automatic breathing and thiamine deficiency has long been known to cause infancy sudden death from failure of this center in brainstem.

Thiamine Deficiency and Sympathetic – Parasympathetic Regulation

The hypothalamus is in the center of the brain computer and it presides over the ANS, as well as the endocrine (hormone) system. The ANS has two channels of communication known as sympathetic (governs action) and parasympathetic (governs the body mechanisms that can be performed when we are in a safe environment: e.g. bowel activity, sleep, etc.). When the ANS system is damaged, sometimes by genetic influence, but more commonly by poor diet (fuel), our adaptive ability is impaired. A marginal energy situation might become full blown by a stress factor. In this light, we can view vaccines and medications as stress factors. From false signal interpretation, we may feel cold in a warm environment, exhibiting “goose bumps on the skin”, or we may feel hot in a cold environment and experience profuse sweating. The overriding fatigue is an exhibition of cellular energy failure in brain perception.

Sometimes, it really is the simple, overlooked, elements that cause the most devastating consequences to human health. Thiamine deficiency is one of those elements.

To learn more about thiamine testing: Thiamine Deficiency Testing: Understanding the Labs.

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. 

Photo by Robina Weermeijer on Unsplash.

This article was published originally in October 2013.

Rest in peace Derrick Lonsdale, May 2024.

 

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