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SIDS and Vaccination

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SIDS Vaccination

Posted on Child Health and Safety on January 13, 2015 was an announcement that vaccines had been proven to cause sudden death in children (SIDS). The announcement indicated that death in 67 cases was only explicable as caused by vaccines. Drug safety regulators were said to have had the information for over two years. In this post, I am going to contest vaccination as the sole cause and try to explain why I think it is a much more complex problem.

In 2001, I published a paper that hypothesized the requirement of three variables: Sudden infant death syndrome requires genetic predisposition, some form of stress and marginal malnutrition. I have just published another paper on the same subject: Thiamin and Magnesium Deficiencies: Keys to Disease.

What History Tells Us about SIDS

Back in the seventies, I was working at Cleveland Clinic in Cleveland Ohio in the Department of Pediatrics. At that time there was a great deal of professional interest in SIDS. In the course of my research, I had found a paper written in a prestigious medical journal in 1944 by a British Medical Officer of Health by the name of Lydia Fehily. Readers will remember that Hong Kong was then a British protectorate and Fehily was sent out from England in order to investigate a common form of sudden death in breast fed infants of Chinese mothers in the colony.

A little bit of history is important to the final solution. Before World War II, the Japanese had invaded China. The rice ration was cut to starvation levels, thus cutting down the calorie intake. Although the symptoms of starvation prevailed in the mothers and the infants, the sudden infant death had disappeared. After the Japanese were driven out, the pregnant mothers in Hong Kong had as much rice as they wished. The calorie intake had been restored, overwhelming the required concentration of vitamin B1 for adequate oxidation of the calories. The sudden death in the breast fed infants immediately reappeared.

Fehily had discovered that the reemergence of SIDS was due to infantile beriberi because the infants were fed by vitamin B1 deficient breast milk (Human milk intoxication due to B1 avitaminosis). Those affected were almost always regarded by their mothers as the healthiest appearing infants in the family prior to their death. These events were rare under two months and after six months of age. It occurred almost always at night, was often associated with a runny nose interpreted as a mild cold and was more common in winter months. The epidemiology of this is almost exactly like that of modern SIDS. Although the modern interpretation is related to the positioning of the infant in the crib, it is certainly not the whole story. I came across the report of a meeting of beriberi researchers held at that time. A statement in that report had said that:

“any sudden otherwise inexplicable infancy death is a guarantee of infantile beriberi. No other disease has a similar outcome”.

Predicting SIDS

During the early part of the seventies it was thought that SIDS could not be predicted, that there were no symptoms to provide a warning. Later on in the decade, it was shown that there was such a thing as “threatened SIDS” judged by a few non-specific symptoms. Coincidentally, an alarm system had been invented that an infant could wear in the crib. It indicated when breathing stopped for a given interval or when the heart slowed. If and when such a thing happened, it was very easy to resuscitate the infant by a simple slap on the buttock.

SIDS, Thiamine and Brain Development

I began to admit infants with this kind of history to the hospital and place them on an alarm system. Believe it or not, by giving thiamine by injection to these infants, the alarms ceased to be initiated. I found this to be very exciting and I continued my research. I even went to Australia to do sabbatical research with the late Dr. Read at the University of Sydney who had evidence of implication of thiamine metabolism in SIDS. I found that there were families where SIDS had been occurring in more than one related infant. There was no pattern that indicated a direct genetically determined outcome and I concluded that it was a genetic risk rather than a genetically determined disease.

The overall logical conclusion to this series of facts was as follows:

  1. That genetic risk implied an unusually well developed brain that required a great deal of energy to function. The only means by which this could be acquired was through pristine nutrition for the mother during pregnancy.
  2. That calories from simple carbohydrate with insufficient thiamine was extremely dangerous. (Note that rice rationing had stopped the infancy deaths in Hong Kong).  The brain of an infant in the first six months of life grows at a tremendous rate and the oxidation of glucose to provide the required energy is crucial. Vitamin B1 is essential to that oxidation. This had been shown by Dr. Peters in Cambridge, England as early as 1936.
  3. That some form of stress may or may not be necessary, depending on the state of biochemistry in the brain. The infant is already at risk at birth because of the nature of nutrition supplied by the mother during pregnancy. A state of marginal malnutrition in the infant is insufficient to meet the energy demands of adapting to the vaccination as a stress factor.

Readers of this website may or may not be aware of a series of posts on the relationship of post Gardasil postural orthostatic tachycardia syndrome (POTS) with thiamine deficiency. I believe that this post on SIDS bears comparison with the logical reasoning applied in that post.  Also, Dr. Marrs has repeatedly pointed out the relationship between drugs and seemingly unrelated disease caused by them.

Does Thiamine Deficiency Underlie Post Vaccination SIDS?

The epidemiology (study of cause) of infantile beriberi (vitamin B1 deficiency) is sudden death. The commonest time for this is between three and four months and more commonly in male infants. Although this is almost the exact epidemiology of modern SIDS, this well researched truth is ignored. The classical vitamin deficiency diseases (beriberi, pellagra, scurvy) are considered to be of only historical interest because vitamin enrichment of foods has abolished them. This is simply not true.  A high intake of sugar in the form of simple carbohydrate, empty calories is widespread in America and other Westernized countries, automatically overwhelming the insufficient concentration of vitamin B1, the equivalent of a choked engine in a car. “Soft” drinks are all too well advertised and encouraged in opposition to the consumption of “hard” alcohol that is regarded as more dangerous. Although the dangers of alcohol are well known, the danger of “soft” and “Diet” drinks, particularly during pregnancy, is almost totally unknown to consumers who erroneously believe they are preventing weight gain and contributing to personal health.  The advertising is misleading.

Looking again at history, we also know that the very first symptoms of beriberi could occur in a group of patients when exposed to sunlight. We now know that ultra violet light is very stressful to the human body, demanding an adaptive “stress” response that is automatically initiated by the lower part of the brain, the limbic system and brainstem. The word “stress” must be used in its proper connotation. It must be defined as a mental or physical force to which we have to adapt. For an infant, stress would include weather changes, infection, trauma, vaccination, partial suffocation from being placed in the prone position, inhalation of chemicals in the crib mattress and other possible variables. This part of the brain is particularly sensitive to thiamine deficiency, diminishing the supply of energy required by the cells in order to perform this complicated adaptive process.

We live in a hostile environment to which we have to adapt automatically 24 hours a day by brain/body mechanisms initiated by the lower brain. Damaging the brainstem affects the nervous control of automatic breathing and control of heart rhythm. Thus, breathing or heart beat may cease in an infant during sleep when thiamine deficiency prevails. During the first six months of life brain growth is tremendously fast, requiring an enormous amount of energy. I am proposing that the infant with the highest, genetically determined brain energy requirement is more at risk. If this is true, the tragedy of SIDS may be removing the most superior future citizens. Obviously, the mother’s diet must provide a proper balance between the calories that provide the fuel and the capacity of the cell to burn the calories by means of the appropriate vitamins. Because we now know that sufficient thiamine or vitamin B1 is critical to prevent beriberi and I have published evidence for deficiency of this vitamin in threatened SIDS, it makes sense to consider the interplay of three variables in SIDS. The three variables are as follows:

  1. Genetic risk, “e.g. a high brain energy requirement”
  2. A non specific stress factor, “e.g. vaccination”
  3. Marginal high carbohydrate calorie malnutrition

It also makes sense to consider the possibility that the stress of vaccinations is too great a risk for infants who are genetically and/or environmentally predisposed to oxidative damage in the brainstem.

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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 Hormones Matter on January 21, 2015.

 

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High Dose Thiamine Healed My Fatigue. How Do I Navigate Pregnancy?

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thiamine fatigue pregnancy

Downward Spiral, Upward Hope, Asking Advice

The year 2020 marked a big change for a lot of people. For me, it meant a downward spiral into intense fatigue, brain fog, and heart palpitations. Healing came in increments over the next three years until I found thiamine, which expedited my healing in six months. Now, I am considering pregnancy, but I need your advice. How do I navigate taking megadoses of supplements while growing a baby? How do I know when my healing journey is “complete,” and does that mean my supplement regimen ought to change? Any and all comments are welcome!

How It Started

It was early 2020 when I returned from a vacation from Thailand and got a stomach bug somewhere along the way home. I rested in bed a couple of days and mostly recovered, but had a lingering burning sensation in my stomach for the next month or so. I then noticed my stool started to smell strange and I experienced bloating after some meals. I went to the gastroenterologist, and within a month they had done an endoscopy and discovered erosive gastritis. I was put on a proton-pump inhibitor (PPI) and sucralfate to coat my stomach.

Two weeks on these medications and I felt immense brain fog and extreme fatigue, so much so that I felt like I would fall over in my chair at work. The fatigue hit me like a ton of bricks– I slept throughout the night and forced myself to take naps, and nothing helped shake the overwhelming fatigue. I took a few weeks off of work and tried to rehab myself at home, eating as much healthy food as possible (I was tracking 3,000 calories a day, which I felt I must need to get healthy again). I tracked all of my nutrients in an app and made sure I hit (and exceeded) the RDA for every nutrient (with the help of supplements). Still, things were not improving much, and I couldn’t even walk one stretch of the block without being utterly exhausted. It was during this time off of work where I felt so helpless and drained in every sense that I remember thinking, “this is what the beginning of dying feels like.” It scared me. But I honestly did not know what to do or where to turn.

A picture from July 2021 after a short hike. I felt horrible and my husband felt great :).

I knew the medications were not making me healthier (even if they made my stomach feel better), so I went off of them cold-turkey. The burning in my stomach became quite severe due to the rebound effect of getting off a PPI, but I pushed through, knowing that I needed my body to heal on its own.

The next three years brought incremental improvements, but still much suffering. Intense brain fog, insatiable fatigue that heightened post-exertion, and dysautonomic symptoms plagued me daily. I was waiting for a big break that seemed like it might never come. Little did I know, my time was coming in the spring of 2023.

How It Really Started

It would be easy to blame a stomach bug for all of my problems, but I now know that my nutrient stores have been taxed and depleted over many instances in my life. Here is a snippet of what led me to the crash:

– Childhood: Ear infections (antibiotics), chronic stomach aches, sugar consumption

– Adolescence: Traumatic brain injury (brain sheer, 3 days coma), mononucleosis, asthma

– Young adulthood: chronic UTIs (i.e., chronic antibiotics (including 3 separate Bactrim prescriptions and anti-fungals (fluconazole) afterward), several deaths in the close family (emotionally taxing), monthly naproxen for menstrual cramps, developed gluten sensitivity, shortness of breath (air hungry).

The stomach bug was simply the straw that broke the camel’s back. All of the stressors in my life (physical, emotional, etc.) depleted my body until it couldn’t retain a guise of “healthy” anymore.

My First (Unknowing) Megadose

Throughout the entirety of 2020, I experienced bloating and IBS symptoms. I managed the symptoms well enough with a low FODMAP diet, but one tiny piece of garlic, onion, etc. and I was ruined. I knew I wasn’t healed with this diet, but I didn’t really know how to heal, especially hearing that IBS is something you have to live with for the rest of your life. This scared me, but I wanted to see what answers may be out there.

I came across a study that claimed that the vast majority of participants taking a multivitamin, B-100 complex, and vitamin D3 were cured of their IBS within three months. It seemed like a miraculous and promising study, so I decided to try it myself. Lo and behold, around the three month mark, I was able to incorporate high FODMAP foods without experiencing bloating (it took a stretch of a few weeks to fully incorporate these foods as my body was adjusting).

Back then, I thought it was the vitamin B5 that was responsible for ridding me of bloating symptoms. Vitamin B5 is closely linked to gut health. Looking back now, I have a strong notion that I was helped due to the thiamine content in the B-100 + multivitamin. I megadosed without knowing it. And unfortunately, after about 4 months, I stopped taking the B-100.

My Second (Reluctant) Megadose

I visited a naturopath in the spring of 2021 to try to get more answers. I still had brain fog and fatigue, and had also developed a regular heart palpitation every ~15 minutes, which coincidentally happened after my second round of a certain vaccine. The naturopath prescribed many supplements, one of which was 150 mg of iron per day. I was shocked by this and thought that was wayyyy too much and was scared I would get iron overload, but he assured me that with my ferritin levels at a 9, it was desperately needed.

Within a week of supplementing with iron, I felt a big boost in energy and felt I had found the answer that I had been waiting for. While it did help, I reached a threshold of improvement that did not change despite continued supplementation with iron for over 1.5 years. The iron supplements did help with my heart palpitations, but I still had brain fog and fatigue. On a scale of 1-10, with 1 being my lowest point in the summer of 2020, iron brought me to about a 4.

My Third (Homecoming) Megadose

So time went on and I tried every supplement under the sun. I focused on vitamins and mitochondrial nutrients such as L-carnitine, alpha lipoic acid, CoQ10, and others, and I was able to live a life that looked kind of normal. But it didn’t feel normal. I was obsessed with finding the answer(s) to this dark cloud that had been engulfing me the past few years.

Until one day, just six months ago, in late April of 2023, a recommended video popped up on my YouTube homepage that changed my life. The video was from a smart lad named Elliot Overton talking about thiamine deficiency.

You probably know how the story goes.

I started with benfotiamine, because I could get it at the store, while I waited for my TTFD to arrive in the mail. I kept trying to press how much I could tolerate without too much headache/fatigue/brain fog, and I honestly can’t remember if I noticed an improvement in those first few days. Once my TTFD arrived though, within two days of supplementing I felt a rushing wave of beautiful relief come over me.

Finally. Finally! My answer had come. I wasn’t immediately better, but I knew improvement was on its way. It wasn’t long before I came across Hormones Matter, which brought me so much useful information! I began sleeping better. My dreams were more vivid. I was able to sweat more easily, something I didn’t know I had lost until it returned. The volume was turned down on my anxiety and breathing deeply was easier.

It took some adjusting and playing around with dosing to find out what would help me. At first, I could only consistently tolerate one 50 mg TTFD pill every-other day, or I would get a racing heart and worsened fatigue. I also noticed that after about a week of taking TTFD, I would start to feel drained, as if it wasn’t giving me that feeling of relief anymore. So what worked for me was to cycle TTFD, thiamine HCL, and sulbutiamine for one week each. That kept my feelings of “relief” heightened. I pretty much abandoned benfotiamine because, well, I had other stuff that was working and I didn’t want to change my routine.

Within about a month, I was able to take one TTFD per day. As time went on, I kept bumping up all of my doses for each type of thiamine. I would basically take a day to test how much I could handle, then try to sustain that higher new dose. By the end of July, I was taking 5-6 TTFD and 10-ish thiamine HCL (100mg each). I am not exactly sure with the doses. I believe I only made it up to 400 mg of sulbutiamine. At a certain point mid-summer, I dropped the sulbutiamine because it seemed to be making me feel depressed, even though it helped when I first began taking it. I also dropped the thiamine HCL. I felt that TTFD was more powerful and so I stuck with it. I no longer experienced a drop in “relief” symptoms and was able to take TTFD only without any adverse effects.

Somewhere between then and now I have worked myself up to 12-14 TTFD per day (600-700 mg). I have very little brain fog or fatigue and can work out without being drained the next several days. I feel pretty darn good most of the time. Of course, there are ebbs and flows, but overall, I am doing well.

In addition to the thiamine, I have been taking lots of support nutrients too, such as magnesium, multivitamin/B complex, selenium, molybdenum. Another major helper for energy has been 10-15 grams of creatine monohydrate per day. I eat a whole-foods diet with no added sugars.

My Fourth (Aha!) Megadose

Recently, I came across information by Linus Pauling, a Nobel Prize and Peace-Prize winner who championed high-dose vitamin C therapy for minor and major illnesses. I caught a cold around this same time, started high-dose vitamin C therapy, and was absolutely sold with the idea, as none of my symptoms really developed into much at all. While I’m not convinced of taking megadoses of vitamin C every single day, I am certain it is helpful during times of sickness.

Then I read about Orthomolecular Medicine, which uses high-dose vitamins for treating diseases (chronic, communicable, genetic), and it all made sense! I felt as though I had uncovered a secret to the world! I wouldn’t have believed it had I not experienced the “miracles” of megadosing first-hand, but now I realize that most, if not all, diseases can be treated with the right dose of specific nutrients for the right amount of time. I also realize that those doses are higher doses than what we think! And higher still! Yeah– even higher. And longer– yes, keep taking them. I don’t mean to oversimplify people’s illnesses, but rather to illustrate the power of high-dose vitamin therapy.

Then Versus Now

My healing journey is not quite over. I have tested positive for antinuclear antibodies since 2020, and my latest test (October 24, 2023) still tested positive (qualitative only). Finding out these results was a little disheartening, as I really thought my results would be negative. I have had less energy and some mild dysautonomic symptoms since receiving those results, which either means a) the power of suggestion has really gotten to me or b) I switched to thiamine HCL around the same time and it is not as effective as TTFD.  I am leaning towards the latter, but I wanted to give HCL more of a shot because the amount of TTFD I’m taking per day is getting expensive! And as a more recent update, the last two days I’ve tried Benfotiamine, which I have been very pleased with— my energy seems to be much better than with thiamine HCL.

I also just started alpha-GPC as a new supplement.

Here is some physical evidence that I am healing:

In one of my textbooks, I found that a B-vitamin deficiency (doesn’t say which B vitamin) causes a smooth tongue.

tongue vitamin B deficiency
Figure 1. Textbook images of vitamin B deficiency affecting the tongue.

I took a picture of my tongue in October 2020, and the second picture in October 2023. Notice the more prominent fuzzy (white/gray) projections in the second picture. These projections are quite blunted in the first picture.

Vitamin deficiencies and the tongue
Figure 2. Photographs of my tongue. Left: October 2020. Right: October 2023. The most prominent changes are on the sides and at the back of the tongue (more “fuzzy”). I believe these changes are in large part due to thiamine.

Hope for The Future

My husband and I are excited about the possibility of getting pregnant, especially now that I am feeling so much better. Having a child has been a long-time dream of mine, and while I was struggling with my health, I wasn’t sure if that dream could come to fruition. So now being in the place I’m in, I’m thrilled that we can think about having a child. I’ve had to tap the brakes on my excitement, because I don’t want to potentially cause any harm to a growing baby due to my megadosing of thiamine. So, I have a couple of questions.

Asking Advice:

  1. Does anyone have any research, personal, or hearsay information regarding the safety of megadose thiamine during pregnancy? If so, did the type matter (TTFD, thiamine HCL, Benfotiamine)?
  2. What is the maximum dose you reached for TTFD/thiamine HCL/Benfotiamine?
  3. Have any of you had any experience with weaning off of thiamine or stopping cold-turkey? I have gone a few days here and there without supplementing with no issue, but not longer than that. If so, was your health maintained, or was there a maintenance dose that sustained you?
  4. How did you know it was time to stop/decrease thiamine (if at all)?

Closing Thoughts

I just want to extend my heartfelt empathy for all of you who may be experiencing health struggles. Before these past few years, I sometimes had the arrogant thought that people could just be healthy if they avoided sugar and exercised. I thought their health struggles were their “fault”, to an extent, but I now recognize the complexity of health and the desperation in trying to find it once it is lost. I understand what suffering is and the feeling that there is no escape. I understand the feeling that no one truly knows what you are going through, even though they extend love and patience with you. I get it, and it sucks so much that this has to be a part of the human experience—but I have also experienced hope. A real hope. A hope that delivers what it promised. I could not have known even a day before taking thiamine that my time of deliverance had come. So please do not give up hope. Your day is coming.

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 Tim Mossholder on Unsplash.

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Everyone Needs a Little Extra Thiamine: New Podcast

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Ann Louise Gittleman Interviews Dr. Chandler Marrs

Several months ago, I had the great pleasure of speaking with Ann Louise Gittleman, an icon in women’s health and nutrition. The topic, as you might have guessed, was modern thiamine deficiency. We dive right into why so many of us are deficient in thiamine and why so few of us, physicians included, consider thiamine as a culprit to illness.

Thiamine deficiency is quite possibly the most important vitamin deficiency of modernity. It causes a long list of ailments that can be easily remedied if you know what to look for. It is so important, that we wrote about it: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition and have hundreds of research articles and case stories on the topic published here.

Why is thiamine so important? Well, thiamine is absolutely fundamental to mitochondrial function, and if you don’t know already, mitochondrial function is absolutely fundamental to everything else. The mitochondria take components of the foods we eat and convert that into biological energy or ATP. ATP then fuels cell function – all cell function. Diminished ATP capacity or output, as one might imagine, causes all sorts of problems, many of which underly modern illness.

If thiamine is that important, why isn’t it among the first nutrients tested when illness sets in? That is a good question. Aside from the lack of economic drivers (why prescribe an inexpensive vitamin when you can prescribe an expensive pill), the only answer that makes sense is that most people think this deficiency is impossible without starvation or alcoholism. That is what the textbooks have told us for generations.

Since we live in an era of food abundance, where obesity reigns and where most foods are either fortified or enriched with some vitamins, it is difficult to imagine vitamin malnutrition. In reality though, many of the products we call food have been so adulterated that they carry with them more toxins and more calories than even the added vitamins can overcome. I have written about this on a number of occasions as well. Here is just one of those articles, but there are many more, if you search the website.

Or, you can just have a listen to this latest podcast here.

thiamine podcast

 

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. 

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Migraine Energy Metabolism: Connecting Some Dots

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migraine, brain energy, thiamine

I have been reading some of the fascinating posts by Angela Stanton PhD concerning her research in migraine headaches. I regard the substance of her discussions as somewhat like dots on a chart that need to be connected. I learned a great deal about the chemistry involved in migraine. One of her comments that involves ion homeostasis in brain metabolism is fascinating. She noted that “serotonin is created by a normally functioning brain. Why it decreases or increases in the brains of migraineurs has always puzzled me. Should we not try to find out why?” That simple three letter word is the heart and soul of research and I believe that I may be able to add some information that might provide an answer.

Ehlers Danlos and Migraine

In one of Angela’s posts she discusses a subject which has been of interest to me for many years, the overlap of symptoms in disease. She noted that 60% of migraineurs have one type of Ehlers Danlos syndrome (EDS) and 43% of EDS have minor changes in DNA (SNPs) found in migraineurs. She concludes that they must be related. Over 70% of migraineurs have Raynaud’s disease and there is an overlap with EDS and Raynaud’s. Therefore, she concludes that these three diseases are variants. In  fact, there is an association between EDS, Postural Othostatic Tachycardia Syndrome (POTS) and a group of conditions known as mast cell disorders. EDS-HT, (one of the manifestations of this disease), is considered to be a multisystemic disorder, involving cardiovascular, autonomic nervous system, gastrointestinal, hematologic, ocular, gynecologic, neurologic and psychiatric manifestations, including joint hypermobility. Many non-musculoskeletal complaints in EDS-HT appear to be related to dysautonomia, consisting of cardiovascular and sudomotor dysfunction. Many of the clinical features of patients with mitral valve prolapse can logically be attributed to abnormal autonomic function. Myxomatous degeneration of valve leaflets with varying degree of severity is reported in the common condition of mitral valve prolapse.

A woman, with what was described as a “new” type of EDS, died after rupture of a thoracic aortic aneurysm. Autopsy revealed myxomatous degeneration and elongation of the mitral and tricuspid valves. Patients with POTS, a relatively common  autonomic disorder, may have EDS, mitral valve prolapse, or chronic fatigue syndrome and are sensitive to various forms of stress, as depicted in the clinical treatment of a dental patient affected by the syndrome. Dysautonomia has been described in the pathogenesis of migraine, featured by nausea, vomiting, diarrhea, polyuria, eyelid edema, conjunctival injection, lacrimation, nasal congestion and ptosis. In general, there is an imbalance between sympathetic and parasympathetic tone.

Energy Metabolism and Migraine

Technological studies have confirmed the presence of deficient energy production together with an increment of energy consumption in migraine patients. An energy demand over a certain threshold creates metabolic and biochemical preconditions for the onset of the migraine attack. Common migraine triggers are capable of generating oxidative stress  and its association with thiamine homeostasis suggests that thiamine may act as a site-directed antioxidant. It strongly suggests that migraine is a reflection of an inefficient use of brain oxygen.  An intermediate consumption of oxygen between deficiency and excess appears to be a necessity at all times. In fact,” moderation in all things” is an important proverb

Backing up energy deficiency, two cases of chronic migraine responded clinically to intravenous administration of thiamine. However, the authors are in error when they state in the abstract that “nausea, vomiting and anorexia of migraine may lead to mild to moderate thiamine deficiency”. An otherwise healthy 30-year-old male acquired gastrointestinal beriberi after one session of heavy drinking. Nausea, vomiting and anorexia relentlessly progressed. He had undergone 11 emergency room visits, 3 hospital admissions and laparoscopy within 2 months but the gastrointestinal symptoms  continued to progress, unrecognized for what these symptoms represented. When he eventually developed external ophthalmoplegia (eye divergence), he received an intravenous injection of thiamine which reversed both the neurologic and gastrointestinal symptoms within hours.

In other words it is important to be aware that nausea, vomiting and anorexia are primary symptoms of beriberi due to pseudohypoxia in the brainstem where the vomiting center is located. Chronic migraine has a well documented association with insulin resistance and metabolic syndrome. The hypothalamus may play a role. One of Angela’s comments concerns ion homeostasis in migraines. Thiamine triphosphate (TTP) can be found in most tissues at very low levels. However, organs and muscles that generate electrical impulses are particularly rich in this compound. Furthermore, TTP increases chloride (ion) uptake in membrane vesicles prepared from rat brain, suggesting that it could play an important role in the regulation of chloride permeability. Although this research was published in 1991, the exact role of TTP is still unknown. It has been hypothesized that thiamine and magnesium deficiency are keys to disease.

Angela wondered why serotonin might be increased or decreased in migraineurs. I strongly suspect that it is due to brain thiamine deficiency as the ultimate underlying cause of the migraine. In a review of thiamine metabolism, it was pointed out that metabolites could be high or low according to the degree of the deficiency. Victims of beriberi were found to have either a low or a high potassium according to the stage of the disease. If they were found to have a low acid content in the stomach, treatment with thiamine resulted in a high acid content before it became normal. If the stomach acid was high it would become low before it became normal. Since low and/or high potassium levels may be found in the blood of critically ill patients, thiamine deficiency should be a serious consideration in the emergency room or ICU Thiamine deficiency may be the answer for the fluctuations of serotonin observed in migraine.

Redefining Disease Models

According to the present medical model, each disease is described as a constellation of symptoms, physical signs and laboratory studies, each with a separate etiology. The overlap discussed by Angela suggests that the various conditions nominated have a common cause and that they are indeed nothing more than variations. If energy metabolism is the culprit, it would make sense of the infinite variations according to the degree and distribution of cellular energy deficiency. EDS-HT, described above is reported as a multi-system disease, exhibiting cardiovascular, autonomic gastrointestinal, hematologic, ocular, gynecological and psychiatric symptoms as well as the joint mobility. It seems to be impossible to explain this multiplicity without invoking energy deficiency as the cause. People with prolapsed mitral valve and a patient with a “new” form of EDS, reportedly have myxomatous degeneration as part of their pathology and it is tempting to suggest that such an important loss of structure might well be because of energy deficit.

The controls of the autonomic nervous system are located in the lower part of the brain that is particularly sensitive to thiamine deficiency and beriberi is a prototype for thiamine deficiency in its early stages. Dysautonomia is frequently reported as part of many different diseases, offering energy deficiency as the etiology in common. Yes, it is true that thiamine is not the only substance that enables the production of ATP. Nevertheless, it seems to dominate the overall picture of energy metabolism. It has long been considered the essential focus in the cause of beriberi, even though all the B complex vitamins are found in the rice polishings. Milling and the consumption of white rice was the prime etiology of the disease when it was common in rice consuming cultures.

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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 June 22, 2020.

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It All Comes Down to Energy

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It all comes down to energy

The Threat Around Us

Animals, including Homo Sapiens, survive in an essentially toxic environment, surrounded by microorganisms, potential poisons, the risk of trauma, and adverse weather conditions. Evolutionary development has equipped us with complex machinery that provides defensive mechanisms when any one of these factors has to be faced. Before the discovery of microorganisms, medical treatment had no rhyme or reason, but killing the microorganisms became the methodology. The research concentrated on ways and means of “killing the enemy”, the bacteria, the virus, the cancer cell. The discovery of penicillin reinforced this approach. We are now facing a period of potential impotence because of bacterial resistance, failure of attempts to kill viruses, and the resistance to chemotherapeutic agents in cancer. Louis Pasteur is purported to have said on his deathbed, “I was wrong, it is the terrain that matters”, meaning body defenses.

Hans Selye, whose research into how animals defend themselves when attacked by any form of stress, led to his description of the General Adaptation Syndrome (GAS). He recognized the necessity of energy in initiating the GAS and its failure in an animal that succumbed to stress. He labeled human disease as “the diseases of adaptation”. In Selye’s time, there was little information about energy metabolism but today, its details are fairly well-known. The suggestion of a new approach depends on the fact that our defenses are metabolic in character and require an increase in energy production over and above that required for homeostasis. If the GAS applies to human physiology and that we are facing the “diseases of adaptation”, it is hypothesized that research should be applied to methods by which energy metabolism can be stimulated and mobilized to meet the stress.

Energy Deficiency, Defective Immunity, and COVID-19

There is evidence that energy deficiency applies to each of the diseases described here. It may be the unrecognized cause of defective immunity in Covid-19 disease. Although in coronavirus disease the clinical manifestations are mainly respiratory, major cardiac complications are being reported involving hypoxia, hypotension, enhanced inflammatory status, and arrhythmic events that are not uncommon. Past pandemics have demonstrated that diverse types of neuropsychiatric symptoms, such as encephalopathy, mood changes, psychosis, neuromuscular dysfunction, or demyelinating processes may accompany acute viral infections or may follow infection by weeks, months, or longer in viral recovered patients. Electrocardiographic changes have been reported in Covid-19 patients. The authors suggest that it may be attributed to hypoxia as one possibility. Because the total body stores of thiamine are low, acute metabolic stress can initiate deficiency. Thiamine deficiency has a clinical expression similar to that observed in hypoxic stress and the authors referred to it as pseudo-hypoxia. It is therefore not surprising that defective energy metabolism can express itself clinically in many different ways.

The present medical model regards each disease as having a separate cause, but the large variety of symptoms induced by thiamine deficiency suggest the ubiquitous nature of energy deficiency as a cause in common. Obesity, a reflection of high calorie malnutrition, has been published as a risk factor for patients admitted to intensive care with Covid-19. Thiamine deficiency was reported in 15.5-29% of obese patients seeking bariatric surgery. Hannah Ferenchick M.D. an emergency room physician commented online that many of her patients with Covid-19 had what she called “silent hypoxemia”. These patients had an arterial oxygen saturation of only 85% but “looked comfortable” and their chest x-rays “looked more like edema”  It has long been known that patients with beriberi had low arterial oxygen and a high venous oxygen saturation. All that would be needed to support the hypothesis of thiamine deficiency in some Covid victims would be finding a high venous oxygen saturation at the same time as a low arterial saturation. Also, edema is a very important sign of beriberi, and thiamine deficiency has been noted in critical illness.

Disrupted Autonomic Function

There have been many articles in medical journals describing dysautonomia, mysteriously in association with a named disease, but with no suggestion that the dysautonomia is part of that disease. More recently, there is increasing evidence that dysautonomia is a feature of chronic fatigue syndrome (CFS), manifested primarily as disordered regulation of cardiovascular responses to stress. Manipulating the autonomic nervous system (ANS) may be effective in the treatment of CFS. Dysautonomia is also a characteristic of thiamine deficiency. Patients with Parkinson’s disease begin to lose weight several years before diagnosis and a study was undertaken to investigate this association with the ANS. Costantini and associates have shown that high dose thiamine treatment improves the symptoms of Parkinson’s disease, although the plasma thiamine concentration was normal. They have also shown that high dose thiamine treatment decreases fatigue in inflammatory bowel disease, Hashimoto’s disease, after stroke, and multiple sclerosis. As already noted, it is also an important consideration in critically ill patients.

Multiple System Atrophy is a devastating and fatal neurodegenerative disorder. The clinical presentation is highly variable and autonomic failure is one of its most common problems. Dysautonomia was found to be a clinical entity in Ehlers-Danlos syndrome, a musculoskeletal disease, and this syndrome frequently coexists with Postural Orthostatic Tachycardia Syndrome (POTS), a disease that is included in the group of diseases under the heading of dysautonomia. Some cases of POTS have been reported to be thiamine deficient. This common condition often involves chronic unexplained symptoms such as inappropriate fast heart rate, chronic fatigue, dizziness, or unexplained “spells” in otherwise healthy young individuals. Many of these patients have gastrointestinal or bladder disorders, chronic headaches, fibromyalgia, and sleep disturbances. Anxiety and depression are relatively common. Not surprisingly the many symptoms are often unrecognized for what they represent and the patient may have a diagnosis of psychosomatic disease.

Immune-Mediated Inflammatory Diseases (IMIDs) is a descriptive term coined for a group of conditions that share common inflammatory pathways and for which there is no definite etiology. These diseases affect the elderly most severely with many of the patients having two or more IMIDs. They include type I diabetes, obesity, hypertension, chronic pulmonary disease, coronary heart disease, inflammatory bowel disease, rheumatoid arthritis, Sjogren’s syndrome, systemic lupus, psoriasis, psoriatic arthritis, and multiple sclerosis. The recent recognition of small fiber neuropathy in a large subgroup of fibromyalgia patients reinforces the dysautonomia-neuropathic hypothesis and validates fibromyalgia pain. These new findings support the disease as a primary neurological entity.

Energy Deficiency During Pregnancy: The Cause of Many Complications

Irwin emphasized the energy requirements of pregnancy in which the maternal diet and genetics have to be capable of producing energy for both mother and fetus. He found that preventive megadose thiamine, started in the third trimester, completely prevented all the common complications of pregnancy. Hyperemesis gravidarum is the most common cause of hospitalization during the first half of pregnancy and is second only to preterm labor for hospitalization in pregnancy overall. This disease has been associated with Wernicke’s encephalopathy, well known to be due to brain thiamine deficiency. The traditional explanation is that vomiting is the cause, but since vomiting is a symptom of thiamine deficiency, it could just as easily be the cause rather than the effect. In spite of the fact that migraines are one of the major problems seen by primary care physicians, many patients do not obtain appropriate diagnoses or treatment. Migraine occurs in about 18% of women and is often aggravated by hormonal shifts. A complex neurological disorder involving multiple brain areas that regulate autonomic, affective, cognitive, and sensory functions, it occurs also in pregnancy. Features of the migraine attack that are indicative of altered autonomic function include nausea, vomiting, diarrhea, polyuria, eyelid edema, conjunctival injection, lacrimation, nasal congestion, and ptosis.

The Proteopathies: Disorders Involving Critical Enzymes

The earliest and perhaps best example of an interaction between nutrition and dementia is related to thiamine. Multiple similarities exist between classical thiamine deficiency and Alzheimer’s disease (AD), in that both are associated with cognitive deficits and reductions in brain glucose metabolism. Thiamine-dependent enzymes are critical components of glucose metabolism that are reduced in the brains of AD patients. Senile plaques and neurofibrillary tangles are the principal histopathological marks of AD and other proteopathies. The essential constituents of these lesions are structurally abnormal variants of normally generated proteins (enzymes). The crucial event in the development of transmissible spongiform encephalopathies is the conformational change of a host-encoded membrane protein into a disease associated, fibril forming isoform. A huge number of proteins that occur in the body have to be folded into a specific shape in order to become functional. When this folding process is inhibited, the respective protein is referred to as being mis-folded, nonfunctional, and causatively related to a disease process. These diseases are termed proteopathies and there are at least 50 different conditions in which the mechanism is importantly related to a mis-folded protein. Energy is required for this folding process. Because of their reported relationship with thiamine, it has been hypothesized that mis-folding might be related to its deficiency on an energy deficiency basis.

It All Comes Down to Energy

A hypothesis has been presented that the overlap of symptoms in different disease conditions represents cellular energy failure, particularly in the brain. If this should prove to be true, the present medical model would become outdated. An attack by bacteria, viruses or an oncogene might be referred to as “the enemy”. The defensive action, organized and controlled by the brain, may be thought of as “a declaration of war” and the illness that follows the evidence that “a war is being fought”. This concept is completely compatible with the research reported by Selye. It underlines his concept that human diseases are “the diseases of adaptation”, dependent on energy for a successful outcome in a “war” between an attacking agent and the complex defensive actions of the body. Killing the enemy is a valid approach to treatment if it can be done safely. Unfortunately, the side effects of most medications sometimes makes things worse and that is offensive to the Hippocratic Oath. We badly need to create an approach to research that explores ways and means of supporting and stimulating the normal mechanisms of defense.

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.

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This article was published originally on May 11, 2020.

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Creutzfeldt Jakob Disease, Thiamine, or B12 Deficiency?

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CJD, thiamine, B12

My husband is a 42 year old man who is suffering from what I suspect is severe thiamine and B12 deficiency that has manifested as hallucinations, dizziness and ataxia, progressive immobility, nystagmus and an upward gaze, memory problems, tics, light sensitivity, and incontinence. In April he was hospitalized for a week. While there, an MRI showed that he had restricted diffusion in the basal ganglia and thalamus, with possible mild right lentiform enhancement. He was diagnosed with Creutzfeldt Jakob Disease (CJD), also known as mad cow disease.

Even though they kept telling me that there was a broad range of things that could cause these MRI readings, including metabolic disorders, the doctors believed he had CJD and have focused only on this diagnosis. In the report, they said that they ruled everything that could mimic CJD out, but later on, the doctor admitted that they didn’t check for other mimics after seeing the MRI. While in the hospital, he was medicated heavily and deteriorated significantly.

Upon learning about thiamine deficiency, and Wernicke’s encephalopathy, I managed to get IV thiamine for him twice and he improved each time, but doctors will not provide them regularly and we cannot afford them on our own. Since symptoms of Wernicke’s and vitamin B12 deficiency can mirror CJD and since he responded positively to both vitamins, I believe he would benefit from IV therapies.

History Of Dietary Malnutrition

My husband has been in the navy for 17 years, on three different ships from 2007 until early 2018 with deployments to the Middle East, Europe, and Asia. He was not in Europe in the 90s. He was on a ship that visited the Horn of Africa. For some of the deployments, he didn’t go out in town. He stayed on base.

He has a history of fast food, soft drinks, and energy drinks. He quit drinking energy drinks in 2020. I cannot remember exactly when he quit drinking them. We had recently started to try and eat healthier, but our diets were still limited. After his symptoms emerged, we did try to clean up our diet.

From about mid-2018, he would skip breakfast and lunch, and dinner usually was fast food. During this time, I was extremely ill and had brain surgery in March of 2019. After COVID hit, we could barely afford food and gas, as prices skyrocketed, so he went without meals again.

In June of 2022, he moved to Virginia for school. He felt better after starting to eat regular meals. He had told me that he was no longer tired all of the time. For the first time in years, he wasn’t falling asleep. He had energy to go out and do things and he just felt good like he hadn’t felt in years. Then when the family moved with him, money had become tight again due to some misunderstandings about housing, so it was back to skipping meals and eating poorly.

From 2013 to 2022, we lived in a house for years that had mold. The molds in the house were Aspergillus, Chaetomium, Cladosporium and penicillium. We also lived in houses that were on an old military artillery range called Camp Elliot. We cooked with the tap water in the first house.

Memory, Gait, and Personality Changes

He had a couple of years complaining about memory problems and being tired before the full brunt of his symptoms appeared. He was always inside and did not go outside much.

His car had an exhaust leak and the windows didn’t roll down. He had driven it across country and also driven it to school and back and to the stores. He had complained about getting tired after driving it.

He started having dizziness and gait problems earlier this year or possibly in December. I cannot say specifically when he started, as he was never one to complain or speak up when he would get sick. Then after a couple of arguments, he developed some personality changes. He also had developed light sensitivity, kept one eye shut and had a tic.

The light sensitivity started in early or mid-March and the eye shut around late March or early April. He quit shutting his eyes in late April, after I had started giving him thiamine, B vitamins and B12. I didn’t realize it could have been the thiamine at that point, as I was solely focused on B12 deficiency at the time. With the vitamins, he stopped hallucinating and his hand had stopped trembling when he would try to hug me. If I had neglected to give him the high doses of thiamine, he had seemed to get worse. I was so traumatized at them diagnosing him with CJD, that I couldn’t keep my focus straight. To this day, he does not shut that eye and he cannot go outside in the sun without it hurting his eyes.

Rapid Decline With Hospitalization

He was taken to the hospital on April 7th after he came home from work. Although his health was declining, he was still able to drive and go to work and was still able to talk at this point. I had been asking him to make an appointment for a while to get his B12, methylmalonic acid, and homocysteine checked, because I had a feeling he was dealing with b12 and/or thiamine deficiency. He kept refusing to go in and finally my sister was able to convince him to go in, so I took him to the ER. He was hospitalized from April 7 – April 19.

A Few Days Before Hospitalization: Still Walking

I suspect during his hospitalization, in addition to everything else going on, he became dehydrated and further malnourished. He was not eating and barely drank anything the entire time he was there. He was never given IV fluids either.

While he was there, he had an MRI with contrast (gadolinium) and was given 1,000mg of acyclovir for 2 or 3 days in case it was a viral infection that was causing his symptoms. He was given Lovenox. The nurse said it was for potential blood clots. He was also given 1,000mg of methyl prednisone for 3 days to treat possible encephalitis and insulin, because they said high dose methylprednisone can cause insulin spikes, which it did.

He began to hallucinate in the hospital and rapidly declined afterwards. The problems with walking worsened. He also had a lost look in his eyes that has, for the most part gone away, but was really disturbing at the time. He became incontinent and developed short-term memory loss, which progressed afterwards and has continued. He is now for the most part nonverbal but can still understand what people are saying and still knows who his family is. Also while in the hospital, he developed nystagmus and a persistent upward gaze. To date, he is in a wheel chair unable to talk. Unable to feed himself. His left arm hangs and he barely wants to eat or drink.

After Hospitalization and Before IV Thiamine: Notice the Left Arm

Improvements With IV Thiamine

I had started him on thiamine and B vitamins in after the hospitalization. I had originally given him thiamine HCL and TTFD, a B complex and b12 injections, which I was not consistent with it. This has been extremely traumatizing and trying to do it alone, I failed. We did not see much improvement until he received IV thiamine. After the first IV thiamine (100mgs), later that night he smiled for the first time in a while.

After First Thiamine IV: Moves Leg

After I took him to get another IV thiamine of 100mg, he was able to lift his left arm and wave, catch and hold a stuffed animal, and pull tissue paper out of his gift bag. He went from mostly non-verbal to trying to speak again. The nystagmus and upward gaze also resolved. A few weeks later though, he stopped speaking again. This suggests to me that we need regular IV thiamine, something I have not been able to convince doctors of.

After Second Thiamine IV: Moves Left Arm

We have just recently begun high dose oral thiamine again.

After A Few Weeks of High Dose Oral: Moving From Car to Wheelchair

Is it CJD or Thiamine and B12 Deficiency or Both?

Prior to all of this, he didn’t have any major health problems. He does have HSV-2. He had contracted Covid in April of 2022. He went to work the day I took him into the hospital. He was never on medication and isn’t now. The hospital diagnosed him with CJD, but I have read case studies showing that Wernicke’s encephalopathy and b12 deficiency have mimicked this disease in every area radiologically, clinically, and with laboratory tests. Given his history and since he responded so well to these vitamins, I believe these nutrients are involved. I have since learned that thiamine deficiency can cause misfolded proteins, like those seen in CJD and that the prion proteins bind and potentially leach thiamine from the body. I have read several case studies where metabolic disorders, thiamine or B12 deficiency mimicked this disease. I also read that these deficiencies could even cause the cortical ribboning, that is presumably diagnostic of CJD but also indicative of Wernicke’s encephalopathy. Apparently, the cortical ribboning will disappear with thiamine replacement. There are case studies that show the rt-QuIC test has been falsely positive in people who had encephalopathy or seizures, and another case study where the diagnosis was Sjogren’s Disease. I also read case studies showing that B12 deficiency and Wernicke’s had cause extremely high 14-3-3 and tau proteins, which normalized after proper treatment. I just know in my heart that he had more risk factors for nutritional deficiencies than he did for CJD.

Regardless of the root cause, I believe high dose thiamine via IV will help, but I cannot get anyone to take me seriously and I don’t have a lot of money to pay for IVs out of pocket. So I am lost. Please help.

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.   

Photo by Alina Grubnyak on Unsplash. Image edited.

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Post Concussive Metabolic Dysfunction in a Dancer

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A Concussion, an Infection and the Slow Spiral of Declining Health

Our daughter started ballet at 2.5 years old, and by 5 years old she had started competitions and had decided she was going to become a professional ballerina. She was talented, had an amazing work ethic and completely loved her life of ballet, friends and school. She was a very happy child, bright and bubbly and she woke up everyday super excited about what was going to be happening that day. From a very early age, our daughter showed determination, stubbornness and a quiet, but strong competitiveness.

In October 2016, when she was 12 years old, she got a severe concussion, and her whole life stopped for nearly 3 months. She stayed in her bedroom in the dark, couldn’t read, slept for most of the day and even trying to tie her shoelaces gave her an intense headache. After months of no improvement, we took her to a chiropractor, who told us her neck was out and she wouldn’t have gotten better until it was put back in properly. Our daughter floated out of that appointment so happy that she nearly felt back to her normal self.  The chiropractor gave us an information sheet about Thiamine/B1 Vitamin at the time, but we didn’t really take any notice apart from trying to give her some more marmite (yeast spread) as it suggested.

Then in September 2017, both our daughter and our older son suddenly became very ill with vomiting, diarrhoea, rashes, headaches, stomach pain, joint pain, and bright red palms. Our older son had more intense symptoms, and also had extreme nose bleeds and petechial rashes – he was admitted to hospital where they found his liver and spleen were enlarged but they couldn’t work out what was wrong. Our son had recently come back from a school trip to Vietnam – we were trying to find if there was a link to Vietnam but he had already been home for a couple of weeks so the hospital didn’t test for any illnesses from Vietnam. After weeks of this illness, we were told our daughter had Mono/Epstein Barr Virus and that this was causing her illness and it was completely unrelated with our son’s illness.  We found this extremely odd that they could have mostly the same symptoms at exactly the same time, but as our son was more acute and in hospital, we were just concentrating on trying to get both of them well.

Since then, our daughter has never fully recovered. She started not sleeping, and constantly having body pains and headaches. She was sent to a paediatrician who diagnosed her with Child Migraines and told us she would outgrow them and was given melatonin for sleep. The melatonin worked for 3 nights and then completely stopped working. Our daughter started to put on weight, and would look puffy in the face, and she lost her menstrual period even though she was gaining weight. She was always tired, always had body pains and slowly but surely lost her sparkle.

Declining Metabolic Function and Weight Gain

At the end of 2017 when she was 13 years old, she lost her place in the national ballet training program. Our daughter was extremely stoic at this point, and was determined to get a professional career without the training academy’s help. Throughout 2018 she continued to put on weight, no matter how healthy she ate or what she ate, and still didn’t have a menstrual period. We saw doctors and nutritionists, but they couldn’t explain why her weight continued to increase or they would tell us there was nothing wrong. Our daughter became quiet, withdrawn, easily irritated and frustrated and stopped being interested in anything or anyone. She continued to work at her ballet, and the only time she would ‘light up’ would be on stage, as she was still trying to compete. During 2018, she gained 10kg/22lbs while being on a very strict nutrition plan. She auditioned for a ballet academy to start at the beginning of 2019 and was accepted; she was happy but in a tired way, and she knew that she would need to stop gaining weight but had no idea how she was going to do that when she had already been trying so hard.

In February 2019 we saw a naturopath who diagnosed our daughter with Adrenal Fatigue, and said her thyroid needed support, and that she still had lingering Epstein Barr Virus in her system.  The naturopath pointed to our daughter always wanting salt as an indicator of adrenal fatigue.  She was put on some herbal remedies for her immune system, inflammation and liver, adrenal and thyroid support, and relaxation/sleep support as well as Epstein Barr Virus liquid drops to help her immune system recognise the lingering EB virus in her system.

The weight started to instantly melt off, her sleeping improved and we felt we finally had some answers and a solution. Our daughter was happy with the weight loss, but still struggled with her other symptoms: dizziness, dry/gritty eyes, chest pain, tiredness, muscle and joint pains, extremely sore lower and upper back pain, brain fog, very low blood pressure, daily headaches, daily sore throat, complete lack of energy and occasionally sore under her right ribs (later on she told us that she couldn’t sweat, no matter how hard or long she exercised).

A month after starting the herbal remedies, she had her first panic attack during rehearsal for a school production – she had no idea what was happening and it took a long time to calm her down. Her mental and emotional state continued to decline, it was a daily struggle to do anything; she always had to push through every single day. We continued to take our daughter to the doctors for the sore throats, tiredness, headaches etc. but we were always told there was nothing wrong with her. During this time she got an infected toenail, and ended up being on antibiotics for twice as long as usual as it wouldn’t heal. The naturopath added in additional supplements to help, and eventually her toe got better.

Even though she was still losing weight, our daughter became very apathetic and would stay in her room – we would try to talk to her every day, try to reach her but she was shut off emotionally.  Then we ran out of one of the herbal supplements, and suddenly she began to gain weight again – she gained 2.8kg/6.2lbs in 2 weeks. Once we got her back on the herbal supplement she began to lose weight again, but it seemed to be slower and less effective. Our daughter got to 51.3kg (she is 5ft7 inches tall) and she was happy, and her ballet teachers told her to not lose any further weight as she was fine at the weight she was.

Hair Loss, Pale Skin, and Skyrocketing Weight

Halfway during 2019, our daughter’s hair started to fall out in clumps, it got to the point where she was too scared to wash or comb it, as it was falling out so much. We noticed our daughter was extremely pale, and at times she looked translucent. The naturopath put her on iron pills and told us to massage her scalp, but it didn’t really make a difference. The naturopath didn’t think she needed to be on the adrenal/thyroid support any longer, and was changing her supplements. Our daughter’s weight then skyrocketed, and our relationship with the naturopath started to deteriorate as she kept implying that we were starving our daughter and we felt she wasn’t able to answer our questions on why one particular supplement seemed to be the only one that would help our daughter lose weight, but she still had the other symptoms that were getting worse.

We took our daughter to other GP doctors, trying to explain her symptoms and asking for her thyroid to be checked, but we were continuously brushed off and they would look at our daughter and say it was just normal teenage hormonal stuff and there was nothing wrong. In our gut we felt there was something drastically wrong, but nobody would listen to us. We started to hate going to the doctors, going through her symptoms only to be told again and again there was nothing wrong with her, and being looked at like we had the problem, not our daughter. We started trying to research things ourselves, started tracking and monitoring everything she ate/did/sleep patterns. The naturopath would change the supplements and our daughters weight would skyrocket – we would then put her back on the original supplements and again she would start to lose weight, but every time it was less effective.

Low Metabolic Rate, Low Estradiol, Yeast and Bacterial Overgrowth, Constipation and Parasites

At the beginning of 2020, our daughter’s weight was going back up significantly and it seemed that the original supplement was no longer working at all. We realised that our daughter’s face and neck seemed to be more swollen on the left side, but couldn’t find any reason why it would be like this.  Our daughter started to get new symptoms around this time as well – from not being able to sweat at all, she started to have extreme sweating everywhere, and started to get hot flushes and night sweating.  We noticed that the hair on her upper lip was more noticeable/darker, and she started to get a small patch of hair just under the middle of her lower lip as well. She also started to get a very bloated around her stomach area, and couldn’t pull it in no matter how hard she tried.

In February 2020, we decided to try and get testing done ourselves, and found a functional doctor who supplied a variety of tests. We got a hormone and thyroid test, as well as a MTHFR gene mutation test.  We thought if we could show our doctor some factual data, we might be taken more seriously. The functional doctor advised us to also do an Organic Acid urine test, which we did as well.  The test results came back saying that our daughter’s total estrogen was so low that it was at the level of a post-menopausal woman, but the functional doctor thought that was because she was a dancer. The organic acid test picked up that she was in a hypometabolic state; again with the reason given that this was because she was an athlete. The organic acid test also showed that she had a significantly high amount of yeast and bacterial overgrowth in her gut, which would cause inflammation system wide and insulin resistance.

The functional doctor wanted to test for parasites as well, so we did a complete microbiome mapping test using a stool sample. While taking the stool sample, we were surprised that our daughter could only produce tiny, rock-hard little pebbles and we questioned her about it, we then found that she was constipated but she thought passing tiny pebble-type stools only every 3-5 days was normal.

While we were waiting for the microbiome mapping results, the functional doctor prescribed a total of 30 supplements/remedies as well as adrenal support liquid drops – these were to cover supporting biochemical pathways, weight management, cognitive support, anti-inflammatories, detoxification, liver support, hormonal metabolism, adrenal and energy support, amino acids to support cellular energy, mitochondrial NRG multivitamins to support cellular health, l-tryptophan to support sleep and neurotransmitter mood support. During this time she was also advised to stop all dairy (she was already gluten/sugar free and very low carb). We did take all of these tests results to our GP doctor, but were advised that they didn’t recognise these tests.

After a week of the new supplements, we noticed a complete shift in our daughter’s energy level and emotional/mental state. We were relieved to have our daughter’s personality back – it was literally like a heavy, suffocating blanket had been taken off her and she could finally think, feel and breathe again – it was a huge difference seeing her not having to mentally struggle through every single day. We did a lot of talking with her and she finally admitted just how numb she had felt to everything, but also scared that this was how she was going to be for the rest of her life.  The supplements did nothing for her weight, which continued to increase, and some of the other physical symptoms, but we were now clinging to the information that we knew she could lose the weight, and that now she could also be better emotionally and mentally with higher energy levels – we just had to figure out what was stopping her from having all of these things at the same time.

In May 2020, the microbiome mapping results came back, and we were surprised to find that our daughter an extreme level of a parasite in her system, called Blastocystis hominis, as well as an overgrowth of Rhodotorula fungi and a couple of other opportunistic bacterial overgrowths. The functional doctor immediately put her on a parasite/bacterial/yeast eradication protocol that was to be for two months, and then we were supposed to follow that with 6 months of a rejuvenation program.

When our daughter found out it was a parasite that was making her sick, she was absolutely ecstatic. She had loved ballet her whole life, but thought it was ballet making her sick so had been pushing it away which had been hurting her emotionally – it hurt her to think that the thing she loved the most was hurting her. Now that she knew it was instead a parasite making her sick, she felt she could allow herself to love ballet again. While waiting for the herbal remedies for the eradication protocol, we started to research the parasite, and started to become very concerned at just how difficult it was to get rid of it, and the devastating symptoms/damage that it could do.

Looking at other protocols that were used to get rid of this particular parasite, the remedies weren’t the same as the ones prescribed by our functional doctor, so we questioned if these particular remedies had been used for this parasite before and if they were successful. We were assured that these remedies had been used and were definitely successful.

Failed Treatments and Inconclusive Diagnoses

Our daughter started on Australian Oil of Oregano, 6 capsules a day totalling 900mg of essential oil each day, as well as 6 capsules of a GI-Microbe remedy for worms. After a week she noticed she had a very itchy bottom and a sore stomach. Our GP doctor wanted to check for PCOS because of the lack of menstrual period and her hair falling out, so our daughter had a pelvic ultrasound 6 days after starting the Oil of Oregano. The sonographer couldn’t see anything in the ultrasound because of the amount of gas (it looked like billowing black clouds on the screen), so after a lot of discussion due to our daughter’s age, she had an internal ultrasound. The sonographer was surprised that it was still hard to see anything due to the amount of gas, so could only see one ovary and a small piece of her uterus, which the sonographer said looked good and didn’t indicate there was PCOS.

During the following week our daughter’s stomach pain became more intense, and her weight was skyrocketing. We started to get very concerned at her escalating reactions but kept being reassured by the functional doctor that this was normal. After 20 days of being on the Oil of Oregano we decided to take our daughter off all of the supplements as we felt they were just making her worse. All of the literature on the parasite Blastocystis advises that you need to wait 8 weeks before doing PCR stool testing to see if the parasite has been eradicated or not. We are currently waiting until 10 August 2020 at the earliest to be able to test to see if the parasite is gone. Since this Oregano treatment, her stools are now every day and better consistency (they were floating which we think is fat malabsorption issues?) and her menstrual period has returned. Her appetite has also reduced, and she isn’t craving carbs and sugar as she has now revealed she used to.

Since then our daughter’s weight has continued to increase at a rapid rate – in total from 27 January 2020 to 31 July 20202 she has gained 14.5kg/32lbs, with 10kg/22lbs being in the last 2.5 months.  She can physically no longer do ballet, so she sits and watches in class instead. After joining a Facebook group for the parasite Blastocystis, we have been seeing a naturopath in Australia via Zoom who had the parasite themselves. We are currently waiting on a SIBO breath test results as the naturopath thinks our daughter also has SIBO. We spend all of our time trying to research all of our daughter’s symptoms, while watching her physically deteriorate. It has totally consumed our family.

Where We Are Now: Was It Thiamine All Along?

Our daughter is in a better mental/emotional space, but doesn’t physically recognise her body at all.  Even our daughter’s orthodontist asked why she was so swollen in her face, especially the left side – but the doctors still don’t think there is anything wrong. Our daughter’s physiotherapist is too scared to touch her, as she is so swollen. We spend every day crying at some point. While researching SIBO symptoms, we came across a comment about Thiamine deficiency, so started to research and bought the book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition”.  Reading about the swelling of the face, and that it is fluid retention in the body was a revelation. But because of what happened with the Oil of Oregano, we are too scared to try doing something on our own and potentially making it worse, and the more we research, more of the other co-factors, we keep finding and things to be careful of. We have been to our GP doctor asking them to investigate if it could be beriberi, so they have started doing blood tests, but then we found in the appointment notes that the doctor still thinks our daughter looks well, so we are disappointed that it looks like they are not taking this potential diagnosis seriously.

Currently we’re waiting on Allithiamine and Lipothiamine to arrive from Australia, as we can’t purchase it here in New Zealand, but with Covid-19 there are huge delays in postage. We have started our daughter on 150mg of Benfotiamine (even that was extremely difficult to find in New Zealand) but at this stage we are hesitant to just ramp up the dosage to see instant results. We took our daughter back to the chiropractor who now advises that her kidneys/bladder aren’t working properly, and also that her vagus nerve isn’t working either. Just this week, we have taken her to an acupuncturist to try and help with the fluid retention, and they’re concerned about her heart and liver and just how swollen she is. We have added in legumes to her diet to help with bile function/detoxification and her stools are now increasing and no longer floating. We are now wondering if maybe she was hypoglycaemic as well.

Reading the comments on the Thiamine Deficiency Facebook group, we should also be looking at potassium supplementation, but conversely you shouldn’t supplement with potassium if there is something wrong with your kidneys. With the doctors not believing us, alternative practitioners wanting to potentially only push their own agenda/supplements or not fully understanding the full consequences of their remedies, or not being able to find out what the root cause of the problem is, and the conflicting information all over the internet, we are completely lost/scared/petrified/confused and feel a huge pressure to fix our daughter and it feels like time is rapidly running out. The stress on us as parents is completely overwhelming, and financially we feel like we are throwing money at this ever-increasing problem and the money is fast running out. We feel that every day is getting worse than the day before, and our hope has faded to a tiny pinprick of light. Gathering all of the information together for the doctors/alternative practitioners/supplements/nutritionist plans/tests looks absolutely ludicrous, but when you’re in the thick of it you’re completely desperate to find anything that could potentially fix your child. Then when it doesn’t work, or it makes the symptoms worse, the guilt is huge.

We’re hoping that by publishing her story on Hormones Matter, others might look at our daughter’s case history, and confirm what is wrong, explain it to us so that it makes sense, and help us fix her in a safe way.

Current Diet and Supplements

Below is a snapshot of our daughter’s typical diet and supplement regime. Please note, the Benfotiamine was begun only recently.

Breakfast Morning Tea Lunch Afternoon Tea Dinner Water/Teas and Remedies before bed
Douglas Labs Ultrazyme x 1 1 large gold kiwifruit Douglas Labs Ultrazyme x 1 50gm Coconut Yoghurt 105gm Roast Beef 3 x Magnesium Citrate (Pure Encapsulations)
2 Egg Muffins – Bacon/Veg 2 teaspoon sunflower seeds 90gm tin pink salmon with probiotics 0.5 cup roast pumpkin
2 Tablespoons Pumpkin Seeds 1 cup Almond Milk 1 cup green Kale/Pak Choi (homegrown) 10 almonds 0.5 cup broccoli
1 Tablespoon Apple Cider Vinegar 2 x Tran-Q 1 cup tomatoes 1 Apple 0.5 cup peas
2 Brazil Nuts 0.5 cup cucumber 2 x Tran-Q
1 scoop Orthoplex Gut Rx 0.5 cup grated carrot
1 X HPA Essentials Tablet 0.25 cup brown rice
** 1 x Doctors Best Benfotiamine 150 1 Tablespoon mashed Avocado
1 teaspoon flaxseed oil
1 tablespoon lemon juice
1 X HPA Essentials
1 scoop Orthoplex Gut Rx

** Benfotiamine was just recently added as of July 25, 2020.

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.

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Image by Dimitris Doukas from Pixabay.

This story was published originally on August 10, 2020. 

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An Artist’s Decades Long Dysautonomia Treated With Thiamine

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artist with thiamine deficiency

Here is the story of my longstanding thiamine deficiency, which was not recognized by doctors. I am 54 years old and have had health issues most of my life.

Early and Prominent Orthostatic Hypotension Missed for Decades

Around the age of 10 or so, I began blacking out upon standing. It never led to syncope — just a brief dizziness and loss of vision. A particular church practice at school caused me to black out often. Lots of kneeling and rising — a great challenge for what would be later diagnosed as orthostatic hypotension. I sometimes had to be led out of church by a fellow student and taken to the school nurse. A friend reported to me that on those occasions, as I was being led out, even my lips were white.

In my teenage years, another challenge was orthostatic intolerance. I would get dizzy and feel light-headed if made to stand a long time. Hot, crowded buses were a particular nemesis: I would black out and feel on the brink of fainting. It was mortifying to be an 18 year old who had to request someone older give up their seat to me because I felt faint. I used to pray before I got on a bus.

During these years, heart palpitations were also a constant issue. It was a way of life for me — my “normal.” I didn’t find out until years later that not everyone experienced violent heart pounding upon climbing a set of stairs. Abnormal sweating was a problem, too — I sweated profusely from the underarms, but nowhere else. Exercise would make my face red and hot — I would get terribly overheated and feel unwell, because my body wasn’t able to sweat and cool itself.

All of these things point to a malfunction of the autonomic nervous system, but I didn’t know that then, and no doctor seemed to put it together, either.

The lower part of the brain, the brainstem, controls the autonomic nervous system.

The autonomic nervous system regulates the most basic aspects of living: heart rate, breathing, blood pressure, sweating, hunger and thirst, fight or flight response, etc. It requires thiamine to function properly.

I was also a good deal underweight and never had as much energy as others. I was terrible at sports and was weakly but did well academically and with art.

Mitral Valve Prolapse, Tachycardia and Heart Palpitations: Signs of Dysautonomia

During art school and afterwards, I waited tables to support myself, as well as worked at school to help pay my tuition. The output of energy this required would prove too much for someone deficient in thiamine. Thiamine plays a fundamental role in energy metabolism, so a deficiency is consequential. My schedule overwhelmed me — I dropped out after my second year. (I eventually went back three years later to complete my degree — this is just one example of how chronic fatigue affected the trajectory of my life.) 

Somewhere in those years, I was diagnosed with mitral valve prolapse. I remember being astonished that the diagnosis had been missed all these years. I was told it was something I had been born with, so it was surprising that no one had noticed it until I was 22. I now know that mitral valve prolapse is associated with defective functioning of the autonomic nervous system, that I likely had *not* been born with it, and that this instead was yet another sign of my malfunctioning autonomic nervous system. Mitral valve prolapse is also associated with magnesium deficiency. The pieces of the puzzle were all there — they just needed someone who understood how they fit together.

It was a relief to be out of school and to be able to rest, but my undiagnosed thiamine deficiency continued to affect me. Palpitations and tachycardia were an exhausting way of life. I became good at avoiding things that would exacerbate that, but things I couldn’t avoid — like oral presentations in a literature class I was taking — would so exhaust me as to render me incapacitated the next day. The intellectual rigor of it thrilled me, however. Life continued like that — avoiding many things that a healthy person would be capable of, in order to preserve energy, while making exceptions for certain things I loved — but paying for that with crushing fatigue.

A busy night of waiting tables was now capable of doing me in so much that I couldn’t get out of bed for hours the next day. My description of how I felt at the time was like a broken stick. I later learned that severe thiamine deficiency is called beriberi, which translates to “I can’t, I can’t.” My heart symptoms also became more complex: palpitations and tachycardia, as always, but now chest pain and an occasional flutter, too. I saw a doctor, who recommended I get an echocardiogram. I didn’t have health insurance, so that wasn’t possible.

Decades Later: Debilitating Fatigue and Arrhythmia

I went many years without medical care. At age 44 my symptoms worsened — the fatigue was debilitating and I was now experiencing an arrhythmia. I was able to teach one day a week in an art school, but the energy it required made me incapacitated the next day.

I was also told by a doctor that I should be evaluated for Marfan syndrome, a connective tissue disorder. I twice landed in the ER due to chest pain and a new arrhythmia while waiting for my appointments with genetics and cardiology. When I finally saw the geneticist, I got great news: I did not have Marfan syndrome. I was clinically diagnosed with a related but less serious connective tissue disorder: MASS phenotype, an acronym for Mitral valve prolapse, Aortic enlargement, Skeletal and Skin findings. Though I was relieved by the news, I was also perplexed: why did I feel so awful and fatigued all the time?

My cardiologist had me wear a 30-day Holter monitor, which resulted in him diagnosing me with dysautonomia. Orthostatic hypotension, and also sinus tachycardia, premature ventricular contractions (PVCs), and paroxysmal atrial tachycardia. His first intervention helped me more than any other — he recommended at least 32 ounces of an electrolyte drink daily, along with 500 mg of magnesium. I felt elated — the particular elation of someone long sick who finally feels better. After a while, however, it wasn’t enough, and he prescribed fludrocortisone (florinef). That made my feet swell so awfully that I developed blisters and couldn’t walk.

The cardiologist referred me to an electrophysiologist for my arrhythmia. That cardiologist put me on a beta-blocker. That also caused some milder foot and ankle swelling, but the relief it provided from decades-long tachycardia, palpitations, and an awful constant awareness of my heart was so welcome. It also reduced my PVCs. Again I felt hopeful and thought this might be the solution. It wasn’t. It temporarily and mercifully relieved some symptoms, but it did nothing to determine and address the true cause of my dysautonomia — which was thiamine deficiency. The beta-blocker eventually caused diarrhea. Because it didn’t happen at first, I didn’t associate it with the beta-blocker and neither did my doctors. The bout of diarrhea lasted 5 months. When I finally decided to quit the beta-blocker, the diarrhea ceased.

In the meantime, I was also dealing with a whole array of other issues: GI distress; food intolerances; peripheral vascular insufficiency (which led me to an unsuccessful and unnecessary surgery); chilblains; costochondritis; debilitating menstrual pain; and ever-looming, crushing fatigue.

Hypovolemia and Undiagnosed Thiamine Deficiency Almost Killed Me

At my lowest health point, my undiagnosed thiamine deficiency nearly killed me (via low BP and hypovolemia). I was at a lab getting a slew of blood tests ordered by my immunologist. I had requested that I be permitted to lie down for the blood draw, because I sometimes passed out otherwise. There was no room available for me, so the technician asked if I thought I could manage sitting up. I should have said no: big mistake on my part. I was sitting up in a chair with a kind of shelf clamped across me. I closed my eyes for the blood draw, and after just a short time felt the unmistakable onset of blacking out. I started to lose my vision and asked the technician to unclamp me from that chair so I could put my head between my knees. She seemed to have no grasp of basic medical knowledge, because she refused, saying she didn’t want my head down and to instead try to “stay with her”. I was unable to free myself because I could no longer see. Then I lost my hearing, and that’s all I remember. I fainted. Thank goodness my husband was there in the waiting room. They called an ambulance and then called my husband back to see me. He said I looked terrifying. Completely white, with white lips, and two techs trying to call me to. He told them they needed to put me flat on the floor. Inexplicably, they wouldn’t let him. He acted quickly and dragged a big box across the room and put my feet up on it. That made me come to. For a long time, I had cuts missing from my vision. I later asked my cardiologist if I would have had a stroke if my husband hadn’t intervened. The cardiologist was angry at what had happened and told me not only would I have had a stroke, I would have died.

Putting the Pieces Together: It Was Thiamine All Along

Like all chronically-ill patients, I had to rely on my own research to try to figure out how to improve my health. I first managed to help myself with some orthomolecular interventions. High-dose vitamin c was life-changing. After starting that and taking steps to support methylation, I was finally able to put on weight and muscle. By the age of 51, I was no longer underweight for the first time since early childhood. And I managed to raise my chronically low BP a bit. Fatigue was still overwhelming but then, gratefully, I came upon the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs. I learned about beriberi, thiamine deficiency, and its relation to dysautonomia. I recognized myself immediately.

I read everything I could on the subject before starting to supplement thiamine. Because I had been so long deficient, I knew to expect a paradoxical response. I also knew, per Dr. Lonsdale, that a paradoxical response was a good indication that thiamine might help me. And it has. It has helped me immensely.

I started with thiamine HCL, 10 mg. Even that tiny dose gave me a paradoxical response. My fatigue became even worse, as did my heart issues — terrible palpitations and much more frequent arrhythmia. My ankles were more swollen than they had ever been. I felt shaky, tired, horribly fatigued. It was difficult and lasted about 2 months. Initiating thiamine supplementation in a patient long deficient causes a kind of refeeding syndrome. I continued titrating up my dose, very slowly, while taking supporting co-factors like magnesium and potassium and a b-complex.

Gains Made With Thiamine

  • Increased energy in general
  • Increased exercise tolerance
  • Raised BP by over 20 systolic points: huge gain for me. I am now regularly around 110/70. If I get exhausted by physical activity and/or stress, it drops again. (For years, my BP was around 79/56)
  • Heart rate normalized
  • Arrhythmia almost non-existent
  • No more heart palpitations after eating
  • Got rid of the constant awareness of my heart
  • Now able to walk rapidly
  • My ankles are rarely swollen now. They used to be swollen every day, particularly if I was active that day.
  • After 8 years, I no longer need to keep my feet elevated when sitting (cardiologist’s recommendation to counteract swollen ankles).
  • I am able to maintain mental clarity even after active or stressful events. Until very recently, I could not think clearly after a day of teaching — used to have to ask my husband to speak slowly and break down complex ideas into simple ones after I taught, because my fatigue affected my cognition. That’s gone now.
  • I very rarely get headaches at base of head (used to be almost daily)
  • No more costochondritis. This used to be a regular, painful complaint of mine. I was astonished to learn that costochondritis is caused by thiamine deficiency, especially since costochondritis is a common complaint in those who suffer connective tissue disorders.
  • I sleep through the night now, even if I was active that day. Until recently, if I was active — and in my limited-energy world, active might mean as little as attending a party — I would have great trouble falling asleep, and then I would awaken in the night after 4 hours of sleep and be awake at least 1 to 2 hours. That’s gone, and good riddance.
  • No more debilitating menstrual periods. I suffered enormous pain with my period for over 35 years. Thiamine treats primary dysmenorrhea.
  • Joint pain relief
  • No more stuffy nose at night when I’m exhausted
  • I wake up singing. I report this not as an indication of mood so much as an indication of energy — I simply never possessed the energy required to sing, at least not in the morning.
  • I wake up early now. Completely new.
  • I’m remembering my dreams again! (Couldn’t recall them for at least the past 5 years).
  • I rarely experience the dreaded “jelly legs”.
  • I am no longer cold all the time.
  • I now am able to sweat more normally.
  • Increased my left ventricular ejection fraction (EF) from 55 to 65 percent. Thiamine has been shown to improve EF in heart failure patients, and though I was never in heart failure, this is the first ever increase of my EF in 10 years, and it appeared after I began thiamine, so I suspect it’s related.

One thing that hasn’t gotten better yet is abdominal bloating. Hoping that improves eventually. I have low stomach acid and am working on that. And I still tire much easier than a normal person, but I’m so much better than I was, and I hope to continue improving.

Final Thoughts

My symptoms started at about the age of 10, which is the age I was when a dentist placed 10 large amalgam (mercury) fillings. A few years later, I got 5 more. Mercury causes vitamin and mineral derangement. (I have since gotten most of my amalgam fillings removed by a SMART dentist using a procedure to minimize mercury exposure.) There are indications that a thiamine deficiency heightens susceptibility to mercury toxicity. Many of the symptoms of mercury poisoning are observed in persons with thiamine deficiency. Additionally, there is a metabolic component to connective tissue disorders that most doctors do not recognize. Along with being diagnosed by a geneticist with MASS phenotype, another doctor (rheumatologist) diagnosed me with Ehlers-Danlos syndrome. Being diagnosed with both, even if not correct, has given me access to both cohorts of connective tissue patients, through online support groups. Most suffer from dysautonomia and have accepted this as genetic fate rather than something that can be improved through vitamin therapy. There is a great need to get the word out on thiamine and vitamin therapy to the chronic illness community.

I am deeply indebted to Drs. Lonsdale and Marrs for their research. It is giving me my life back.

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: Original painting by the author.

This article was published originally on April 19, 2021.

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