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Rapidly Deteriorating Health With Thiamine Deficiency

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thiamine deficiency

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

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

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

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

Rapidly Disintegrating Nerve Function

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

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

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

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

Loss of Consciousness, Compromised Speech, and Vision Changes

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

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

Was it B12 Deficiency?

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

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

Another Hit to My System

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

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

Maybe Multiple Sclerosis?

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

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

Discovering Thiamine Deficiency

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

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

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

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

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

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

Recovering But Disillusioned With Modern Medicine

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

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

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

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

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COVID Notes: A Calcium Tsunami in COVID Infected Cardiomyocytes

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covid notes - heart damage

In July 2020, I became ill with what may have been something related to COVID, or not, as there was no testing that was easily available to confirm. The illness affected my heart function. Since then I have been following the research on COVID-related heart damage. Over recent months, several studies have been published showing the mechanisms of viral-related heart damage. It appears that viral heart infection is not exclusive to COVID. So it is entirely possible that what I experienced was not COVID, but just some random and bizarre viral infection. Nevertheless, my experience was odd enough that it may be of use to someone and so I am publishing it here along with some thoughts on potential mechanisms.

Some Background

I am a 53-year-old, generally healthy, though overweight by traditional standards, powerlifter with several world records in my federation, age, and weight class. I train 4-5 days per week and have for the last several years. Before that, I did Crossfit and before that, I played water polo for decades. Physical fitness has always been a part of my lifestyle. I eat healthy, and largely organic, and I don’t drink or smoke. I have not taken any medications in over a decade, not even ibuprofen. Although as a young woman, I, like so many young women, inhaled ibuprofen on a monthly basis along with a laundry list of other medications prescribed by physicians. My one remaining chemical vice pre-infection was a cup of iced coffee every morning after workout. Now, post-infection, I cannot tolerate even a minimal amount of caffeine.

As the pandemic was approaching, we purchased some home gym equipment and put a gym in our living room to keep training. We have continued to train at home throughout. For the first few months, we rarely left the house. Prior to the closures, I would access a variety of bodywork modalities to help my body maintain its ability to lift heavy and to manage longstanding neck and shoulder injuries. This included regular massage and several different forms of chiropractic care. With the closures, I did not access these services for months and it was taking a toll. In May, I began accessing some chiropractic care again. At the end of June at one particular appointment, I think I was exposed. A few days later, I became ill, but not in the traditional manner described by the media or the studies.

Asymptomatic COVID or Something Else?

It began with odd bouts of breathlessness when climbing stairs or doing normal everyday activities. Since I had no fever or cough and felt fine, I went on with life. A few days passed and just before we were to drive to our cabin for some rest and relaxation, I developed lower GI symptoms such that I remained home. That also passed within a few days and I thought whatever it was had resolved. I was wrong. Soon after, absolute exhaustion hit, and my blood pressure and heart rate climbed. Over the next few weeks, I battled increasingly high blood pressure (150-160s/110-120s), heart rate (90s – my normal is in the 50s), edema, and pounding pressure in my head. I had no fever but experienced intense hot flashes or flushing. My pulse ox remained in the mid-90s throughout.  It felt like everything was out of sync, including my autonomic system.

Among the oddest experiences were the episodes of pressure, swelling, and blood pressure spikes. I would get these seemingly random bouts of pressure in my head and heart. I would be sitting or standing, it didn’t matter, and all of a sudden everything would go haywire. I could watch my hands and feet swell up multiple times their normal size over a matter of minutes. The pressure in my head would increase, and along with it, my blood pressure would spike. On several occasions, I worried that I would stroke out or have a heart attack. Additionally, my pulse was irregular and thready. My heart fluttered and skipped beats. I could feel the missed beats and arrhythmic patterns through the blood pressure cuff. Needless to say, I could not function for several weeks and mostly slept, well more than normal.

I could not work out the first week at all. I could barely stay awake. The second week, I could lift a little, but had to rest for several minutes after each very light lift. I would become out of breath, my heart would pound out of my chest and pulse through the back of my skull and neck. Again though, my O2 levels per the pulse oximeter were fine. My heart rate was high for me, but otherwise fine. My blood pressure was not, so I was very careful. During this time, I could not put a barbell on my back to squat. When I did, it felt as if there was just too much pressure in my head. It was horribly disconcerting and harkened thoughts of stroke. It took about 5-6 weeks before I could put the barbell on my back without the excessive pressure and return to some semblance of a normal but light workout. It took another few weeks before I could do any volume.

While all of this was happening, I still took no medications, except aspirin periodically to thin my blood in the event I was potentially clotting. I continued my normal regimen of 200mg of Allithiamine. I may have upped it to 300mg a few times. I upped my magnesium from 100-200mg per day to ~400mg depending upon the blood pressure. When my pressure spiked, I would pop a magnesium or two to bring it down a bit. I began taking fish oil again, about 2 grams per day. I continued my normal multi-vitamin along with extra vitamins A, D, and K2 and added 1-2 g of vitamin C. I had been taking a zinc, and copper combination since March as well.

At about 3 weeks in, I sought more specialized chiropractic care where the practitioner adjusts the atlas. I had used it previously before everything shut down and hoped it would help relieve some of the pressure in my head and neck. Soon after, I also began acupuncture to help clear some of the edema and manage my blood pressure better. Over the next several weeks, everything gradually improved. It was probably 8+ weeks or so before I felt more normal, before the edema subsided completely, and everything stabilized.

The experience was so strange though that I am not sure what exactly happened. Was this what might be deemed an asymptomatic or mild expression of COVID or some other viral infection? Because I was not able to be tested I’ll never know but in recent weeks research has come out detailing more of the mechanisms involved in COVID-related heart infections. One particular study struck me as a possible mechanistic explanation of what I imagine might have been happening. This study, together with some insight into mitochondrial function, suggests a picture of heart stress, provoked by the virus that was functionally similar to wet beriberi despite the fact that I was taking thiamine. I suspect the mechanism identified in this study against the backdrop of the individual’s underlying mitochondrial fitness may determine COVID morbidity and mortality in cases where the heart is preferentially affected.

The Ca2+ Tsunami in COVID Infected Cardiomyocytes

The study, SARS-CoV-2 direct cardiac damage through spike-mediated cardiomyocyte fusion, involved a series of experiments investigating the physiological and electrochemical properties of COVID-infected cardiomyocytes. The cells were derived from an autopsy of a 35-year-old woman who died suddenly in her sleep. She was three months postpartum and in the week prior had experienced mild fever, and cough, and had been light-headed but no other symptoms. At autopsy, she tested positive for COVID but per the report had no evidence of lung infiltration. To clarify the cause of death, myocardial cells were examined. What they found was that while the virus had not affected her lungs, viral proteins were identified in her the cells of her heart.

Through a series of tests and experiments, the researchers discovered that the viral proteins infected the electromechanically coupled cardiomyocytes building a bridge between cells, such that the virus was able to disturb the electrical potential/rhythm of the heart muscle. These cell-to-cell conduits then provided the

…pathoanatomical substrate for aberrant electrophysiological activity, electro-mechanical dysfunction, and fatal arrhythmia.

Additionally, they found that the altered electro-physiology in the infected cells was marked by prolonged action potentials, delayed after polarizations, and erratic beating frequency e.g. notable dysrhythmia. Importantly, they observed a pathological calcium (Ca2+) flux, which they describe as ‘tsunami-like waves’.

We suggest that SARS-CoV-2 spike glycoprotein-induced membrane changes directly injure CMs [cardiomyocytes], heightening cardiac arrhythmia risk even at low viral load and in the absence of widespread lymphocytic myocarditis-mediated tissue destruction.

The low viral load and the Ca2+ tsunami are what struck me most. Could it be that in some individuals, who are predisposed either genetically or epigenetically, the virus preferentially affects heart cells largely bypassing the lungs? In this case, a low viral load would be sufficient to cause problems, particularly, if the mechanism identified in this case holds. While it is clear that viral-infused cardiomyocytes would wreak havoc on the electrical potential of the heart, a sudden influx of calcium, well, that could be deadly, particularly if, as the report suggests, the cardiomyocytes are fused. The electrical potential would quickly overwhelm the cells’ ability to re-establish rhythm.

COVID, Calcium, and Cardiac Function

Backing up just a bit, the activity of cells like the cardiomyocytes, neurons, and muscles, is dependent upon a tightly choreographed series of changes in ion flux. See figure 1. With stimulus, sodium (Na+) channels open and Na+ floods the cell. This is the action potential mentioned above. Immediately following Na+, potassium (K+) channels open and K+ flows out, slowly at first and then more quickly as more channels open, and with it, Ca2+ comes rushing into the cell. The outflow of potassium prevents additional repolarization for a brief period while the buildup of Ca2+ feedbacks and eventually closes the Ca2+ channels. All of this happens within milliseconds and is highly regulated. If the timing is off or any of these ions are out of balance, arrhythmias develop.

COVID Notes - calcium heart function
Figure 1. Action potential of the cardiomyocyte.

Of these ions, it is the Ca2+ influx that is responsible for signal transduction, for setting into motion pathways that tell the cell how to respond to external and internal stimuli. As such, calcium homeostasis is of critical importance for cell function. A rapid influx of supraphysiological levels of Ca2+, as was evidenced in the study above, would induce a hyper-contractible state, disturb the timing of the electrical signals, and eventually, completely overwhelm the capacity to clear the excess, invoking apoptotic and necrotic death pathways depending upon mitochondrial ATP availability. Each of these markers has been found in the COVID-infected heart. These same disturbances may be also found in a condition called wet beriberi – thiamine deficiency that affects the heart. Similarly, cardiomyopathy, dyspnea (breathlessness), and elevated troponin, other common findings attributed to the COVID heart, are also associated with cardiac beriberi. Given my research on thiamine deficiency/beriberi, I cannot help but wonder if what we are seeing in COVID heart patients is some manifestation of the same process.

Although electrochemical research on both COVID and thiamine deficient myocardial function is lacking, as much of the research appears to focus on gross morphological changes mediated by inflammatory infiltrates, and we do not know if the Ca2+ tsunami identified in the aforementioned study is common across both disease processes, it is logically possible. Inasmuch as mitochondria provide the energy substrate that permits contraction and relaxation of the cardiomyocyte as well as Ca2+ management and sequestration, mitochondrial function may sit at the nexus of virally mediated cardiac events. To the extent that thiamine is critical for each of the key pathways involved in ATP production, insufficiency would impair these actions. And finally, since mitochondrial fitness is unique to the individual, this might explain why, even when there is clearly visible cardiac damage, symptom expression is mild or absent altogether in some individuals but deadly in others. This may be what is happening with athletes who are COVID positive and display limited symptomology but develop myocarditis. This may have been the case with me as well. Again though, without proper testing, this is speculation on my part. Nevertheless, the Ca2+ tsunami aptly describes a potential underlying mechanism for what I experienced.

If this turns out to be correct, the questions then become 1) why does COVID preferentially affect the heart and not the lungs in some individuals, 2) are the mitochondria the determining factor of severity and survival, and if so, 3) are there things we can do to support the mitochondria and maximize survival? While I do not know the answer to question 1, I have argued from the beginning of this pandemic that the determining factor in COVID morbidity and mortality comes down to mitochondrial fitness. To the extent mitochondrial fitness is determined by nutrient availability, thiamine especially, the answer to question 3, is yes, we can do something to improve outcomes. In a subsequent post, I will explore these questions more closely.

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Thiamine: A Missing Piece of the COVID-19 Treatment Puzzle?

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thiamine and covid

Earlier this year, Hormones Matter published two posts suggesting that thiamine could be helpful in treating COVID-19, one by Dr. Lonsdale focused on the role of thiamine in facilitating the energy metabolism needed to fight disease and one by me focused on thiamine’s potential to increase oxygen levels through the inhibition of carbonic anhydrase isoenzymes. Since the publication of these posts, new evidence has emerged that further supports the potential benefits of thiamine for COVID-19. This post reviews the new evidence and argues for the accelerated execution of a randomized controlled trial to evaluate the potential of thiamine to slow the progression of COVID-19 in newly diagnosed outpatients.

Thiamine and COVID-19: New Evidence

The most important new data are: (1) a study which found that high-dose thiamine lowers the Th17 cell proinflammatory response believed to be associated with the COVID-19 cytokine storm and (2) data on mortality rates from two medical centers using the MATH+ protocol to treat COVID-19 hospitalized patients. I summarize each in turn.

  1. Modulation of Th17 proinflammatory response. Through a creative combination of in vivo and in vitro experiments, the authors of this study demonstrate that thiamine interrupts the cycle of inflammation believed to play a role in the cytokine storm associated with COVID-19, leading to reduced levels of IL-17 pro-inflammatory cytokines and increased levels of the anti-inflammatory IL-22 cytokines. They determined that a range of 74-474 mg daily of thiamine would achieve the desired response in COVID-19 patients. Notably, this study did not involve patients with COVID-19, but rather patients with alcohol use disorder, who also tend to experience a pro-inflammatory state characterized by elevated IL-17 levels. So thiamine’s effectiveness in preventing and treating COVID-19 still needs to be tested in a clinical setting. The study is in the pre-print phase only, and is currently under review by a peer-reviewed journal. This video by Dr. Mobeen Syed provides a helpful explanation of the study and its context.
  2. Reduced COVID-19 mortality rates in two hospitals using the MATH+ protocol. The MATH+ protocol for COVID-19 combines a range of substances to treat hospitalized COVID-19 patients: Methylprednisolone (a steroid), Ascorbic Acid (Vitamin C), Thiamine, Heparin (a blood thinner) and several additional components, including melatonin, zinc, vitamin D, atorvastatin and famotidine. Grounded in the experience Dr. Paul Marik and his collaborators gained in treating patients with sepsis, and other emerging evidence, the protocol has been endorsed by a group of physicians known as the Front Line COVID-19 Critical Care Alliance. The protocol is intended to be used as soon as hospitalized COVID-19 patients meet the criteria for oxygen supplementation. Dr. Marik’s version of the protocol, the EVMS Critical Care COVID-19 protocol, also includes recommendations for treatment at earlier phases of the disease and for prevention.

The MATH+ protocol has not been evaluated through a randomized controlled trial, but the authors have published a detailed scientific review of the protocol as well as data on the mortality of patients treated with the protocol.  According to their data, through July 20, 2020, the two hospitals using the protocol (United Memorial Medical Center, in Houston, TX, and Sentara Norfolk General Hospital, in Norfolk, Virginia) reported mortality rates for hospitalized COVID-19 patients of 4.4 and 6.1 percent, respectively. This compares with mortality rates for hospitalized COVID-19 patients of 15.6 to 32.0 percent reported in other studies.  Since this is not a formal controlled study, it is possible that explanations other than the use of the MATH+ protocol could account for the sharply lower mortality rates at the Houston and Norfolk hospitals. Nevertheless, the comparatively low mortality rates of the hospitals using the MATH+ protocols  represent very promising results.

Other recent articles suggesting a role for thiamine in treating COVID-19 include: an article on the potential role of B vitamins in treating COVID-19, a review of the potential of vitamins to treat COVID-19, and an article focused on famotidine, melatonin and thiamine. Many of the studies on the potential role of thiamine in treating COVID-19 are summarized in this review. This article focuses on the potential of the carbonic anhydrase inhibitor acetazolamide to prevent kidney damage from COVID-19.  As noted in my earlier post, an in vitro study suggests that thiamine may be nearly as effective as acetazolamide in inhibiting carbonic anhydrase isoenzymes.

Potential Mechanisms Linking Thiamine Deficiency to COVID-19

The exact mechanism through which thiamine may be contributing to the results discussed above is unclear. One potential pathway is thiamine deficiency, which is fairly common in severely ill patients and discussed by the authors of both the Th17 research paper and the scientific review of the MATH+ protocol. As the scientific review of the MATH+ protocol observes:

The human adult can store around 30 mg of thiamine in muscle tissue, liver and kidneys, however, these stores can become depleted in as little as 18 days after the cessation of thiamine intake. A thiamine deficiency syndrome, beriberi, bears a number of similarities to sepsis, including peripheral vasodilation, cardiac dysfunction, and elevated lactate levels. In critical illness, the prevalence of thiamine deficiency is 10–20% upon admission and can increase up to 71% during ICU stay, suggesting rapid depletion of this vitamin.

At the same time, however, the authors noted that “[b]ased on limited data, no association was detected between thiamine levels, markers of oxidative stress and mortality” in two studies.”   

There could also be benefits in using thiamine as part of a combination protocol with other agents. For example, the authors of the MATH+ scientific review note that the combined administration of thiamine and steroids may help to enhance the anti-inflammatory properties of steroids. “In experimental rheumatoid arthritis, thiamine increased the ability of corticosteroids to suppress production of TNF-á and IL-6.”

An intriguing role for thiamine in countering the inflammation associated with some viruses is raised by the authors of the paper on the Th17 proinflammatory response. They cite in vitro research which found, using feline models that some viruses rely on a thiamine transport protein in the disease cycle. In theory, occupying the thiamine transporter by providing thiamine to thiamine-deficient individuals could inhibit a virus which relied on this same transporter. While not specifically addressed in the paper, this raises the question of whether the use of high doses of thiamine in individuals without a deficiency could have a similar effect in interrupting the disease cycle of a virus that depends on the thiamine transporter.

Neither the Th17 study nor the scientific review of the MATH+ protocol mention thiamine’s role as a carbonic anhydrase inhibitor, but it is noted in two of the other articles referenced above as potentially contributing to reduced hypoxia. This pathway needs further study. Carbonic anhydrase inhibitors produce carbon dioxide, which can help to reduce the hypoxic conditions that produce inflammation. One way is through increased respiration.  Several other mechanisms for carbon dioxide’s protective effects are summarized in this article:

Numerous other mechanisms potentially exist whereby CO2 protects the tissues from hypoxic-ischemic damage. An increase in blood pCO2 shifts the oxygen hemoglobin dissociation curve to the right (Bohr effect), the result of which is a decrease in the affinity of hemoglobin for oxygen. Therefore, at the capillary level, CO2 would tend to raise pO2, increase the gradient for any given oxyhemoglobin saturation, and facilitate transfer of O2 to the tissue for oxidative processes. CO2 might also preserve cardiac function during systemic hypoxia. The inhibition of systemic lactate production by CO2 inhalation during hypoxia would serve to maintain optimal cardiovascular function.

Research Needed

Given the severity of the COVID-19 pandemic, and the expected challenges associated with the combined burden of flu and COVID-19 on hospitals this fall and winter, it is important to test all plausible treatment avenues for COVID-19.  The data reviewed in this post add to the evidence base supporting a randomized controlled trial (RCT) to test whether thiamine – alone or in combination with other agents – could help to slow the progression of COVID-19 and/or mitigate the cytokine storm associated with some of its worst effects.

Cognizant of the prevailing view that RCTs are the best way to build evidence about the effects of medical treatment, the authors of the scientific review of the MATH+ protocol specifically discuss their decision to forgo an RCT. They argue that the clinical value of each of the treatments included in their protocol has been well established and that they therefore do not have the clinical equipoise (“the belief by the investigator that neither intervention in the control or experimental group is more effective”) necessary to justify a trial. In essence, they argue that it would be unethical to deprive patients facing a deadly disease of treatments they believe to be effective. Instead, they are pursuing a different research approach: “the formation of a patient registry to measure and compare the outcomes of patients treated with MATH+, not only against the prevailing ‘supportive-care only’ strategy, but also against other novel proposed treatment approaches employed throughout the country and world.”

Even if the necessary clinical equipoise is not available to justify an RCT in hospitalized patients, I would argue that there IS sufficient clinical equipoise to justify an RCT testing the effects of thiamine and other agents in slowing the progression of COVID-19 in newly diagnosed outpatients. While there is a theoretical basis for believing thiamine could be helpful, we won’t know whether and to what extent it is helpful in a real-world setting until a trial is done. One approach would be to test a combination therapy that relies on oral versions of many of the substances used in the MATH+ protocol, such as vitamin C, thiamine, heparin or another blood thinner such as aspirin, vitamin D, melatonin, famotidine, and zinc. Due to concerns about possible harms resulting from the administration of a steroid too early in the progression of COVID-19, it would likely be advisable to omit a steroid from the earliest stages of treatment. The rationale for avoiding steroids in non-critically ill COVID-19 patients is discussed in the September 2, 2020 World Health Organization guidelines on the use of corticosteroids for COVID-19.

Many of these substances are already being evaluated in trials to assess their effectiveness in treating COVID-19, as reflected in the ClinicalTrials.gov database.  But not thiamine.

What are we waiting for?

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A Role for Thiamine Deficiency in Cancer

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There is ever increasing evidence that energy metabolism is involved in the causation of cancer. A phenomenon known as the Warburg effect has been known for a century and was thought by Warburg to be the cause of cancer. To summarize this effect, normal cells primarily produce energy by the consumption of oxygen in a complex mechanism known as oxidative phosphorylation. This involves the consumption of glucose as fuel. The Warburg effect is because most cancer cells produce energy through a high rate of glucose metabolism by fermentation, even though there is abundant oxygen present. This is a less efficient method of producing energy, an effect that has been much studied but whose mechanism still remains unclear.

In cancer research today, the focus has been primarily on genetic mechanisms and the Warburg effect is considered to be a result derived from these genetic changes rather than the underlying cause. However, energy is vital to normal cell function, so a drop in energy synthesis might be a defect that has a secondary effect on genetically determined mechanisms. Since the vitamin, thiamine, is so closely involved with the metabolism of glucose, it is not surprising that a few researchers have looked at the involvement of this vitamin in relationship to the cause of cancer. For this reason I turned to looking at what medical literature has been published in regard to this and was surprised to find that it was relatively abundant.

Wernicke’s Encephalopathy, Thiamine Deficiency, and Cancer

It has long been known that a deficiency of thiamine in part of the brain causes a brain disease that was named after the person who originally described it. This is known as Wernicke encephalopathy (WE). I discovered a manuscript in which 18 patients had developed WE during cancer treatment. Cancers involving blood cells and the gastrointestinal tract were reportedly more common, but poor appetite and weight loss were common risk factors. All of the 18 patients presented with cognitive dysfunction represented by impaired alertness, attention deficit and poor short-term memory. Few of these patients developed the typical symptoms described for the clinical diagnosis of WE, thus making it difficult to recognize the cause of the changes in the patient’s mental status. Of course, the obvious question is whether this is secondary to treatment or whether it is involved as part of the causative mechanism in the cancer. I looked for further evidence.

Breast Cancer and Thiamine Homeostasis

A group of researchers set out to try to find whether there was a difference in thiamine homeostasis (its overall place in body chemistry) in breast cancer cells as compared with normal breast tissue. Without going into the scientific details, they concluded that their findings demonstrated an adaptive response by breast cancer cells to increase cellular availability of thiamine, thus demonstrating its importance to those cells. To explore further the relationship of thiamine in breast cancer, female breast cancer genetically susceptible mice were exposed to 4 diets that varied in fat and thiamine content. The scientific discussion is complex but the authors concluded that there was a potential role for dietary thiamine and an interaction between thiamine and fat in breast cancer progression. This may be important since thiamine has recently been found to be involved in the metabolism of some fats. The findings of a study support the protective effects of thiamine, folate, riboflavin and vitamin B6 against breast cancer in general.

A compound by the name of dichloroacetate has been found to kill cancer cells in breast, brain, and lung cancers in rats, while not harming healthy cells. The anti-cancer effects of this drug have been reviewed. Without indicating the scientific aspects of the study, the authors noted that their findings, together with limited clinical results, suggest that there is a potentially fruitful area for clinical trials with some tumors. A study suggested that high-dose thiamine reduces cancer cell proliferation by a mechanism similar to that described for dichloroacetate.

Surgery, Thiamine Deficiency, and Wernicke’s Encephalopathy

Cancer patients submitted to gastrointestinal surgery are at risk for thiamine deficiency and WE. They often remain undiagnosed and untreated and WE may become manifest several months after hospital discharge. The authors stated that “even in the absence of symptoms of thiamine deficiency the use of prophylactic thiamine supplementation should be taken into consideration, as the consequences of misdiagnosis can be severe “.

With Cancer Genetic Research Dominates

A well-known proverb states that “there is never smoke without fire”. The questions raised in this post suggest that there is indeed “smoke”. There are several obvious reasons why the “smoke” is not being recognized sufficiently to jump start major research. The first reason is that it has been concluded that the Warburg effect is secondary to genetic cause. Genetic issues have therefore become virtually the exclusive approach. However, the available literature suggests that nutritional issues may have an epigenetic (how genes are affected by nutrients and lifestyle) relationship with genetic activity.

I would like to suggest a third issue, the impact of stress. A definition of stress states that it is a mental or physical force requiring brain/body defensive interaction, requiring an individual to adapt to the existing situation. It makes little difference whether the stress is mental or physical. It is the brain that has to conduct the orchestrated reactions. Chronic long-term mental stress is just as debilitating as prolonged  physical illness or severe trauma. The reasoning is derived from the work of Hans Selye. For those unfamiliar with this research, Selye stressed rats physically by many different types of assault. It is probable that his cruel experiments, performed over many years, made the recognition of his work much less acceptable. Nevertheless, he was able to determine that physically stressed animals went through several stages of resistance that he called the General Adaptation Syndrome (GAS). These stages were repetitive from animal to animal and were reflected by laboratory changes in tissues and blood similar to those seen in human disease.  Selye’s most interesting conclusion was that a great deal of energy was required in order to meet the physiological needs of resistance and that it was a failure of this energy synthesis that caused final collapse. Skelton, one of Selye’s students, was able to induce the GAS by making an animal thiamine deficient, thus demonstrating a relationship with energy metabolism. Selye offered the statement that human diseases were “diseases of adaptation”. His conclusion was more remarkable since little was known  during his time concerning the synthesis of energy in the human body. Much more is known now, making Selye’s work more plausible.

Preventing Illness

We cannot avoid the situations of life that give rise to chronic long-term mental stress. If our ability to handle them successfully depends on pristine nutrition, it obviously entails self-discipline as possibly our strongest preventive method. Physical stress may be lethal in its own right but nonlethal injury demands brain activity in coordinating the adaptive defense and is thus just as dependent on brain function. We now know that  consumption of energy is greatest in the heart and brain so perhaps it is not surprising that heart and brain disease are so common.

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This article was published originally on September 17, 2018. 

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Recovering From Suspected Thiamine Deficiency

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On and off over the last several years, I have had peripheral neuropathy along with a number of other strange symptoms like air hunger, light and sound sensitivity, and balance and gait issues that I believe are related to an undiagnosed thiamine deficiency.

Peripheral Neuropathy, Air Hunger, Dizziness, Altered Vision and Other Symptoms

I have always taken pretty good care of myself as well as taking supplements. I should note, that for the year prior to my health decline, I was drinking a lot of coffee, approximately 40-60 ounces per day. I have since learned that coffee diminishes thiamine. When I began to develop the neuropathy, I didn’t really know what it was. The strange sensations would come and go, but it became more and more intense in my legs and feet. Last summer, I also started to feel similar vibrations in my rib cage. It was extremely uncomfortable.

In addition to the neuropathy, I would wake up sometimes during the night gasping for air. Toward the end of last summer, I could really feel my energy slowly waning and in November of 2019, I had the flu. After I recovered from the flu, I still felt exhausted and weak. I went back to the doctor in December, 2019 and was found hypothyroid and put on Levothyroxine. I have been diagnosed with Hashimoto’s Thyroiditis. Anyway, I did not feel much better and I went back in January, 2020. I had a chest x-ray which showed lung inflammation and was told it could be COPD or asthma. I was asked if I had been smoking and I said it had been 35 years since I’ve smoked. (I am now 61.)  At this point, I had some serious nervous system disorder signs, which I now think were the signs of both dry and wet Beriberi.

My symptoms had progressed to the point that I was extremely sensitive to light and sound and had extreme lightheadedness/dizziness. My vision plane was tilted to maybe like a 30 degree angle. My gait was weird at times and my balance was terrible. I received a general blood test and was also tested for Lyme disease, Lupus, RA and other autoimmune diseases, with normal results. They also tested my adrenal and parathyroid hormones and that came back normal. My body overall had this continuous buzzing type of sensation. I am normally social but felt so bad that I wanted to withdraw from people.

Was It Thiamine?

I found Drs. Lonsdale and Marrs information about thiamine and started on Allithiamine in mid-March 2020 and continued to see the chiropractor. I started with one, 50mg capsule per day and now am up to three 50 mg capsules a day. I plan on increasing to four capsules per day soon. The dizziness, balance problems, visual disturbances, light and sound sensitivity issues, and gait issues are pretty much gone.

What has worsened is that I have a hiatal hernia that never really bothered me that has begun to bother me a lot over the last 4-6 weeks. When I am having a flare-up, I am short of breath and my abdomen feels extremely tight between my ribs. This happens every few days. I feel that I have been healing but the abdominal discomfort and the effect it is having on my breathing is extremely uncomfortable at times. I am wondering if it is normal for one set of symptoms to resolve and a new set to arise. It is clear that the thiamine is helping with a number of my symptoms, the dizziness, balance and gait and the light and sound sensitivity have all improved, but the hernia and the pressure it causes on my breathing, has worsened. Will Allithiamine possibly help heal my lungs of the damage caused by smoking all those years ago? Will it help with the breathing and hiatal hernia or am I missing something?

I would love to hear your comments about all of this. I am deeply grateful for all of the work and research your site has done shedding light on the importance of thiamine.

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

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An Over Medicated and Chronically Ill Millennial

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Frequent Infections, Antibiotics, and Asthma

As I’ve reflected on my current health challenges, I’ve come to the realization that I need to head back in time to my earliest years. Like many kids born in the early 90s, I was the first to receive a slew of vaccinations that were previously never given to children. I suffered from frequent “earaches” that led to multiple courses of antibiotics before kindergarten, and by the time I reached middle school, I was taking yearly courses of antibiotics for all sorts of things: colds, sinus infections, acne. It was around this time that I was also diagnosed with exercise induced asthma. I remember almost passing out in a lacrosse practice in 7th grade, and before I knew it, I was put on Advair (daily inhaled steroid) and was hitting the albuterol 2 or 3 times before a workout. My allergies also raged during this time.

Anxiety and Doctor Prescribed Benzodiazepine

I started getting increasingly anxious in early high school. I remember getting what I now know are symptoms of a panic attack in late middle school. Though part of this was due to the fact that I was hiding my sexuality (and hiding it well), I also realize that I had been slamming my adolescent body with drugs, vaccinations and the standard high sugar American diet for 14 years at that point.

My anxiety caused sleeping issues and I was placed on Ambien when I was 16. When I was withdrawn from that, the anxiety got worse (I know now it was Ambien withdrawal), and I was finally sent over to a psychiatrist. After listening to my description of panic attacks, she placed me on Klonopin, one of the most potent benzodiazepines on the market that should never be used for more than a few weeks. She told me to take up to four a day (an insane dose) and that like a diabetic, I needed GABA enhancement, and I would have to take these for the rest of my life.

At 17, I was buzzing on a benzodiazepine every day. I remember that it actually felt quite good and erased all worry. But then I began to experience one of the most terrifying side effects of long-term benzodiazepine dependence: I was getting dementia! I couldn’t remember things for tests or quizzes no matter how hard I studied. When I brought this up to the psychiatrist, she assured me that a little amnesia was a common benzodiazepine side effect, but that the benefits outweighed this. Essentially, giving a teenager dementia outweighed him having anxiety.

Benzodiazepine Withdrawal and Repeat Concussions

When I decided I needed to come off the benzodiazepine after taking it for a year, her instructions were to taper over one week and then jump. Now, this was 2010, and the internet was alive and well at that point. Upon doing just a little bit of research, I knew this woman was insane. All recommendations were that benzodiazepines needed to be tapered over the course of many weeks if not many months. I found a benzo support group online that became my lifeline for the next 4 months as I gradually weaned myself off the drug with the support of my parents and a new primary care doctor. Throughout this time, the one drug that I actually credit with saving me is marijuana. Without it, I’m not sure I would have done as well as I did getting off the drugs and then staying off of them.

I went right off to college that fall, which in retrospect was a miracle. I struggled a lot that first year. I was experiencing post acute withdrawal syndrome (PAWS) from the benzodiazepine and almost flunked out. I gradually improved but was still dependent on nightly marijuana to go to bed. In 2014, I finally stopped smoking weed and was 100% drug free.

That summer, I ended up getting my first concussion, though I suspect I had many others growing up as I played soccer and lacrosse. As if one wasn’t bad enough, I somehow ended up getting another the next summer in 2015 when I was at the beach and hit my head on a car door. I was later told by a neurologist that once you have a concussion, it becomes significantly easier to get a second, and then a third, and so on.

I had long suffered minor symptoms from benzodiazepine withdrawal that never went away, like tinnitus in my ears, an inability to take GABA drugs without reactivating withdrawal symptoms, and other neurologic symptoms that always made me feel “different.” The concussions added to this complex situation and I would have what I can only describe as seizures during times of stress or intense workout. It felt like my brain had electric current running through it.

Around this time, I also received the first injection for the Gardasil vaccine. I never followed up with the rest of them because of how off I felt that the first few days after getting it. Only recently have I learned about the severe damage that Gardasil can cause.

By 2016, I had been doing a paleo/plant-based diet and felt generally well, but the symptoms from both benzo withdrawal and my concussions persisted. In 2017, I started using CBD oil, and I found that it relieved a lot of the symptoms. It calmed my brain down significantly. I also began using Truvada (HIV medication) during this time as PreP. The one issue that never went away throughout all of this was my anxiety and panic. I was prone to situational panic attacks that felt like my fight/flight system was in total chaos.

A Complete Crash with Tinidazole

Despite feeling okay in 2018 and most of 2019, my whole world was turned upside down again in the fall of 2019. I contracted some sort of stomach bug that wasn’t going away, and my doctor placed me on a drug called Tinidazole, the sister drug of Metronidazole (Flagyl). I haven’t felt the same since that day.

The symptoms came on almost immediately. Dizziness, depression, increased anxiety, neuropathy in my hands and arms. I became convinced that I had ALS because my hands weren’t working right. It was also unlike me to ever assume something as terrible as a fatal diagnosis, but my brain was in total disarray.

Two weeks after taking the Tinidazole, I had to go back on antibiotics for wisdom teeth removal. Immediately after the surgery, I went into one of the most horrendous panic attacks of my life, in part because I had been injected with novocaine about 20 times. I had to be wheeled out of the doctor’s office because the panic had been so bad. Looking back now, there is a similar case study in Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.

Things only got worse. By the end of the penicillin, my body was in a total spiral. I began having daily panic attacks that I can’t even describe. My body temperature was low, my fight/flight system was in disarray, I was depressed, I couldn’t think clearly. There were nights when I wouldn’t sleep at all and be in total fight or flight mode. I now know that I was going through Tinidazole toxicity that had gradually gotten worse over a few weeks. Combined with the penicillin, it was a recipe for disaster.

The strangest symptom that has come out of this experience is hypoglycemia. My blood sugar is tanking to dangerously low levels during the day unless I am extremely diligent about eating. There have been a few times that I have almost blacked out. This isn’t a common symptom of Metronidazole/Tinidazole toxicity, but I don’t know where else it could have come from.

Where I Am Now

I’ve improved a bit, but I’m still having symptoms like dizziness, hypoglycemia, altered mental state, neuropathy and a total dysfunction of my fight/flight system.

Looking back at my long and complicated history, I’ve discovered a few things in my research:

  • Early and frequent antibiotic use is linked to anxiety and depression
  • I ate A LOT of sugar throughout my life and my thiamine stores were probably always being hit hard and my mitochondria have probably been fighting this battle my life
  • The benzodiazepine and Ambien have caused deep alterations to my nervous system/GABA receptors that became less noticeable with time but will never fully heal
  • Concussions cause a cascade of effects that damage mitochondria function and lead to other semi-permanent neurological issues
  • Truvada (PreP) also harms mitochondria
  • Tinidazole plummets your thiamine

Thiamine Deficiency and Problems With Paradox

I’d like to start Dr. Lonsdale’s protocol for high-dose thiamine, but I encounter painfully difficult paradox symptoms. I have tried to start with a low dose (less than 10 mg) twice now, and always end up having to stop because it gets so bad. The “heart attack” and “seizure” symptoms are simply too frightening and I’m not sure what’s actually going on in both my brain and heart. I’d like to find a functional doctor that could possibly work with me to measure what’s going on when I take thiamine.

I’m also in the process of working with doctors to run tests on my hypoglycemia issues.

The only other thing I’ve considered is a fecal transplant. Since I’ve been on so many antibiotics, I’m convinced that some of my issues may stem from altered gut microbiota.

Lots of people see improvement from Metronidazole/Tinidazole toxicity over the course of 6-12 months. But unless I can take action, I suspect my thiamine issue will remain.

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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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A 55-Year-Old Quadriplegic Man’s Quest for GI Health

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Lifelong GI Issues

Ever since I was a child, I suffered from a variety of gastrointestinal issues (GI), many, I now know were diet related. These symptoms included: gas, bloating, indigestion, food sensitivities, chronic fatigue symptoms, undigested food particles in the stool, pinworms, candida overgrowth and other pathogens. This is in addition to being chronically underweight and suffering from poor sleep because of GI symptoms. I also had thin skin and slow healing, weak bones, joints, and tendons. My GI issues were a glaring problem through my 20s and 30s but became worse at the age of 38 after I got my mercury fillings removed.

When I was 42 years old, all these issues came to a head and were magnified exponentially when I crashed my mountain bike and broke my neck in multiple places. The injury, the surgeries, the feeding tube, and the endless list of medications pushed my body to its limits. While I survived, I am paralyzed from the chest down with minimal use of my arms. Over the years, I have tried multiple protocols, but have only recently begun to unwind these symptoms with the help of dietary changes (carnivore diet and oxalate clearing) and the use thiamine. This is my story.

Raised on Processed Foods

I was born on May 7, 1964, the third of three children. As was common at the time, my mother smoked during pregnancy, had multiple mercury fillings put in just before she started having babies and ate and fed us a diet that consisted mostly of highly sweetened and processed foods. Things like Captain Crunch, powdered milk, margarine and Wonder Bread were staples at our house. Even with all of these processed foods in my diet, I was underweight my entire life. I had a difficult time gaining weight and putting on muscle or developing strength. I was given antibiotics here and there throughout childhood, and remarkably, when I was three years old there was one month where I had bronchitis three times, each with its own course of antibiotics. I also used to get pinworms for a certain phase of my childhood.

Problems with My Bones, Joints, and Tendons

Despite all of this, I was active in sports from junior high onward. I played basketball from junior high on and ran cross country the last two years of high school. Early on though, I had problems with my joints, bones, and tendons. My junior year, I developed shin splints running cross country and in my senior year of high school, I began having knee problems, which a gym teacher diagnosed as chondromalacia. My knobby tibial tuberosities suggested a probable Osgood-Schlatter’s syndrome, although I did not experience the knee pain that most have with this condition. My back went out on me for the first time at the age of 23, and for a long time, it went out every winter. After college, I tried getting back into running and experienced Morton’s neuroma and I had to give it up.

Changing My Diet, But Maybe Not For the Better

In my early 20s, I started experimenting with diet in hopes of feeling better. For some reason I got it in my head that pursuing a vegetarian diet was a noble thing to do. I joined a food co-op and started making a lot of whole grains and beans and whole-grain bread and nut butters and lots of vegetables that I had never eaten before. I was not fully vegetarian and I ate meat occasionally. It seems like it was during this time things continued to get worse. I was weak, easily fatigued, had joint problems and brain fog and lost a significant amount of weight. I should note, that since high school, I had very stinky flatulence. Within a year or two of this diet, I figured out that eating dairy was giving me back acne and so I eliminated dairy from my diet as well. This new dairy free diet improved that aspect of my health, even if the rest of my health continued to decline. I was becoming so unhealthy, there were a few times that ejaculation caused my back to go out. By the time, I was 26, I had almost no desire to masturbate. Given my GI distress, I underwent a stool test via the Great Smokies Lab (now called Genova Diagnostics). It showed that my microbiome was a mess. I had two amoebas, two pathogenic bacteria, high levels of candida, and very low levels of good bacteria.

At 29, I lived for five months at Kripalu, a wellness center in Western Massachusetts. They served a vegetarian diet and I really got into the live food thing. I consumed lots of sprouts and fermented drinks. I’m 5’10 inches tall and I probably got down to about 120 pounds. I convinced myself it was my body going through a cleansing process 🙂 For the next two years, I remained fully vegetarian, mostly vegan.

At 31, a health practitioner convinced me to start eating meat again and I put on 10 pounds in one month. From that point on, I was eating meat and keeping my simple sugars really low but still eating rice and other grains like quinoa and buckwheat.

At 35, I picked up a bug in Mexico and had diarrhea, which I managed for about eight months. After three rounds of antibiotics, I finally had more normal stools, but always with a certain amount of undigested food and usually loose.

In the autumn of 2001, I had my five mercury fillings removed by a dentist who I thought was doing it safely. However, I cannot honestly remember if I had an alternate air source over my nose. In the early winter of 2002, my back went out on me, the worst it ever had. Normally, it would take a week or two to be back to normal but this time it went on for months and months. In the autumn of 2002, I developed chronic diarrhea again. Things started really falling apart the following winter of 2003 and I seriously thought I might be checking out of this life. At some point during that winter I found out about the specific carbohydrate diet and give that a try. I met a woman who was also following the specific carbohydrate diet and told me about Andy Cutler‘s work with mercury chelation. I immediately started working directly with Andy in May 2003. It was really tough going at first because I could only tolerate 100 mg of powdered magnesium without having more bowel dysfunction.

Sometime during the summer of 2003, I decided to see what would happen if I only ate meat and winter squash. Within a day or two, I had an almost normal stool. I realized that I didn’t have some kind of untreatable pathogen but that my already bad food sensitivities had gotten profoundly worse. Andy got me to do a plasma cysteine test with great Smokies laboratories. He explained to me that with many of his clients he was seeing that the Mercury messed up the enzyme that breaks down cysteine. He told me that my plasma cysteine level was the highest he had ever seen. Another confirmation that I probably was dealing with chronic mercury poisoning. Meat and winter squash, avocado, olive oil, coconut butter, zucchini and salt were my diet for many years after that. Even though, somethings improved, others did not and I was always limping along but not thriving. I spent three years following Andy Cutler‘s protocol for mercury chelation. It seemed to help stabilize things but it wasn’t a big turnaround I was praying for.

Over the course of decades, I saw dozens of practitioners and spent a lot of money on supplements and various protocols and healing modalities in an attempt to heal my gut and correct, what seems like lifelong GI dysfunction, much to no avail.

A Broken Neck

In August 2012, I crashed on my mountain bike and broke my neck. I fractured C3 through C7, vertebral bodies of C4 and C5 were crushed and the spinal cord was severed at C5. I had five level cervical fusion with plates in the front end rods in the back. It was a huge medical intervention with lots of medications and I almost died several times. For the first two months, I had a feeding tube and was fed some kind of horrible, powdered, grain-based crap. After two months, I passed the swallowing test and was allowed to start eating my previous diet. After four months in the hospital, I came home with lots of medications, a completely stressed out body and mind and not very sure if I wanted to continue living. Since then I’ve had many sleepless nights and so much discomfort.

After the injury, I developed severely low blood pressure and I continue to take meds for vasoconstriction. My blood pressure tanks periodically, but especially when eating. At one of the hospitals, I had practitioners tell me that they had never seen anybody drop their blood pressure so much when eating. So now I pre-medicate before eating. I wouldn’t go anywhere without my blood pressure cuff for at least a year.

In addition to the GI issues and problems with blood pressure since the injury, over the last six years my muscles have gradually become increasingly fibrous. It feels like they are becoming a mix of fiber and plastic. It’s so horrible that at times I don’t know how I can even manage to stay sane inside my body.

Trying to Recover

About a year after I got out of the hospital, I did a three-day round of chelation with alpha lipoic acid and DMSA. The following two weeks, I had four or five times that an incredibly foul smelling bio-film came out of my bottom. All of a sudden, I started getting high blood pressure and I had to reduce my medications by 30%. I didn’t make the connection until a year later when I learned that chelation compounds can dismantle biofilms. I chelated again two months later and I had the same experience; lots of horrible smelling biofilm came out and then another need to decrease my low blood pressure medications.

Bladder infections are quite common in people with indwelling catheter‘s. After so many times of being diagnosed with bladder infections and taking antibiotics, I was desperate and tried doing three days of a lot of unsweetened cranberry juice. That threw my poor gut into absolute chaos, the likes of which I never experienced before. I tried managing it with grapefruit seed extract and some other things to no avail.

Still desperate to relieve the never-ending gastrointestinal distress, I found and tried a parasite protocol put together for autistic children. The protocol begins by building up a dosage of chlorine dioxide. I had an incredibly hard time building on my dosage, as the detox symptoms were horrific. About two months into taking chlorine dioxide, I woke up one morning about 4 AM thinking I was close to death. I had extreme anxiety, ADD and severe discomfort. When I did my bowel program that morning, I had chunk of biofilm come out, and within less than an hour, I felt really good in my body with a clear mind. Over the next four or five months, I continued the protocol and struggled greatly with the detox symptoms, which limited me from hitting things as hard as many people are able to. Eventually, I got depleted from doing enemas and had to stop that protocol. For the next 2 1/2 years or so, I continued to take chlorine dioxide on a daily basis. If I stopped I got massive brain fog, exhaustion and felt extremely cold all the time.

More Broken Bones

Two years ago, I developed three fractures in my right knee just from riding my functional electronic stimulation bicycle. That is how bad my osteoporosis had become. Luckily, I found a fantastic magnesium product called Remag, a liquid pico-ionic magnesium solution, which is so incredibly absorbable that even at 1200 mg per day I showed no signs of laxative effect, but I did show signs of powerful detoxification. I started sweating, profusely at times, for about six weeks before it stopped. Previously, any powdered magnesium above 100 mg would give me a loose stools. It took about 4 to 6 months of not riding my bike before I was able to start riding again.

One and a half years ago, I had a cone beam scan of my mouth and discovered I had five abscesses. Four were at the sites of my wisdom teeth extractions and the fifth was under my front six lower teeth. Six months later, I was in Utah seeing a biological dentist for a remediation of those infection sites. I was really hoping this work would really help improve my intestinal health. It seems like my mood has improved since then, but overall, I can’t really say I saw any improvements in my digestion and my pathogen load.

I picked up some kind of oral pathogen from my partner, which creates a black staining of my teeth. The chlorine dioxide kept this at bay, and now since I have stopped the chlorine dioxide this past year the black staining has progressed and is quite disgusting to see. The dentist in Utah took a blood sample from one of the extraction sites and performed live microscopy. It definitely was not a pretty sight. Large strands of pancaked and aggregated red blood cell, and in one of the samples, there were many black sea urchin looking creatures that the dentist said he had never seen before. He was suspecting is some kind of mold. Perhaps that is the black staining on my teeth?

Ongoing Dysbiosis

Last winter, I started working with somebody from the company Systemic Formulas which makes a large selection of uniquely formulated supplements. I implemented one of their parasite protocols and over time was able to get off the chlorine dioxide. I also implemented some of their detoxification protocols and only had marginal results. Since that time last spring, I’ve had to continue with at least one of their products and colloidal silver to keep the dysbiosis in my intestines in check.

Just over a year ago, I purchased an ozone generator for rectal insufflations. It seems to help reduce symptoms but even with very consistent use, it does not seem to have created long-term improvements. About a year ago, I also purchased a pulsed electromagnetic field, PEMF, device that similarly seems to help with symptoms but has not created long-term improvements.

I was really convinced Ozone could help so I found a doctor who has the equipment for major autohemotherapy in which blood is extracted, ozone is added and the IV is reinserted. I definitely had some die-off symptoms, but did not seem to have any long-term benefit.

Beginning to Heal With the Carnivore Diet

In mid-August 2019, I began eating a carnivore diet. After about two months, I started putting on some weight, the first time in many years. I haven’t had the big changes many people do after almost 6 months, but I have a lot of healing to do.

I have an obvious oxalate problem. This is demonstrated by oxalate crystals coming out of my eyelids, my skin and in my urine, which I can easily see because of clear tubing that goes to my urine drainage bag.

Finding Thiamine: Another Missing Piece

November 2019, I listened to some videos by Elliot Overton from the UK. He did an interview with Dr. Chandler Marrs and recommended her book that she co-wrote with Dr. Lonsdale. That interview and the book have inspired me to work with Elliot and begin raising my dosage of thiamine. Initially, I noticed some improvements in muscle function and reduction of this feeling of tiny pieces of sharp plastic embedded in my muscles. When I got myself up to about 300 mg of Allithiamine, I started having some paradox symptoms possibly. For several weeks my muscles became a lot tighter and spastic, I had quite a few nearly sleepless nights and I started sweating profusely similar to when I started taking the magnesium. I had some diarrhea but that could have been from eating grain flour on a steak at a restaurant without realizing it. It could also be from being on the carnivore diet and stopping milk thistle herb and vitamin C in an effort to reduce oxalates.

At the date of this writing on March 4, 2020 I am taking 800 mg per day Allithiamine. I am wondering if I am one of the people who are so thiamine deficient that I might need to increase my dose over 1 g before I see a difference. I have been taking 8 grams of vitamin C for about one year and when I found Sally K Norton‘s video on oxalates I dropped vitamin C, milk thistle, and collagen. It was sometime around then that I started getting looser stools and almost diarrhea at times. It wasn’t until I started talking with Elliot that we started thinking I’m might be one of the people who has trouble with diarrhea with Carnivore but the vitamin C and the milk thistle was keeping it in check. I have added 4 g of vitamin C back and the milk thistle for several weeks until my stools firmed up again. I also lowered the amount of magnesium I was taking.

Although the GI symptoms are the major driving force for experimenting with allithiamine, and reading the book Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition, I am very curious about neurological symptoms. I would say I am very strongly stuck in sympathetic mode with a tendency towards anxiety. Perhaps, it was thiamine deficiency all along. My dietary choices over the years would certainly support that possibility.

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Dementia and Thiamine Deficiency

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In this post I will try to indicate how you might detect cognitive changes in a loved one and how you might help defer the onset of severe neurological disease. Every person developing dementia goes through mild cognitive impairment first. A given symptom might be short-term memory loss, difficulty in finding a particular word or forgetting well-known procedures. We expect such changes in people in their nineties, but if they develop in the fifties, you can suspect that this is the beginning of dementia that is a disease, not normal aging.

What Do We Know About Dementia?

A study published in 2017 reviewed the observational studies examining associations between non-genetic factors and dementia. A total of 76 unique associations were examined, of which seven presented convincing evidence. They found an association with use of benzodiazepines (common drugs for mental disease), depression at any age, late-life depression and infrequency of social contacts for all types of dementia. Late-life depression and type  2 diabetes were associated with onset of Alzheimer’s disease (AD). Emotional stress causes brain function that consumes energy.

A review assessed the effect of the drug metformin (used in the treatment of type 2 diabetes) on the risk, progression and severity of AD and other forms of dementia, as well as any measures of cognitive performance or impairment. A case of encephalopathy (brain disease) occurred in a patient receiving metformin who was in end-stage diabetic renal failure. The drug was withheld and signs and symptoms quickly resolved. The authors hypothesized that metformin induced thiamine deficiency (TD), based only on their use of brain imaging that has a characteristic pattern caused by TD. Although metformin has become a drug of choice for the treatment of type 2 diabetes, some patients may not receive it “owing to the risk of lactic acidosis (increased concentration of lactic acid in blood or urine)”, a significant finding in critically ill patients who often respond to thiamine administration . Diabetic patients taking metformin may be predisposed to thiamine deficiency that  is common in diabetes anyway . There is epidemiological evidence linking type 2 diabetes and its related conditions (obesity, insulin resistance, metabolic syndrome) to AD and it has recently been proposed that AD can be considered as “type 3 diabetes” because of disturbed glucose metabolism in that disease .

Mental Versus Physical Disease

It is probably absurd to separate the body from the brain. As has been said on this website many times, the body is composed of between 70 and 100 trillion cells, all of which have individual responsibility. I have used the analogy of a symphony orchestra where the brain is the conductor and the body organs are like banks of instruments that have to work together. The cells in each organ can be compared to the instrumentalists. They all know what to do but must work together “to play the symphony of health” under “the baton” of the “brain conductor”. Hence, for example, the immune system is an extremely complex union of mental and physical, requiring the brain, the nervous system and a variety of cells that carry out function. Assuming that the genetically determined genome”blueprint” is perfect (without mistakes in the DNA) all the cellular machinery requires is energy and that comes from an enormously complex list of nutrients.

Resulting from a great deal of personal experience and the genius of Hans Selye, I have concluded, like him, that energy metabolism is the focal point of health and disease. Selye developed the idea of what he called the “diseases of adaptation”. He coined the phrase the “General Adaptation Syndrome (GAS) in which he described the processes by which an animal adapts to physical and mental impositions of stressors. A stressor is any form of threat encountered  by us on a day-to-day basis. It may be mental (a divorce) or physical (infection, trauma). He concluded that energy was required to drive the GAS (the ability of the brain/body orchestra to face the stress and adapt to it). One of  Selye’s students was able to support this idea by producing the GAS in an experimentally induced thiamine deficient animal. The remarkable thing about this work was that in Selye’s time, little was known about energy metabolism. Today, the biochemistry is well outlined, if not complete, and thiamine stands out as a vitally important component. In continuing the analogy of the orchestra, I have nominated it as “the leader” (the chief violinist in an orchestra).

The Demands of an Active Brain

By far and away the best example of an energy defect in human disease is that of thiamine deficiency beriberi. Because energy deficiency is the underlying cause, it can imitate virtually any collection of symptoms that are regarded as those of a specific disease in the present medical model. Also, because it has many “psychological” symptoms, a long morbidity (continuation of symptoms) and a low mortality, it is dismissed as trivial. Since the brain and heart are the most energy consuming organs, it would be an obvious conclusion that a well endowed functional brain (genius) might be more at nutritional  risk than someone less well endowed. I turned to the medical histories of three historical characters, all of whom were acknowledged geniuses. Their health problems have been debated without any conclusions. It was their similarity that appeared to me to be so striking.

Charles Darwin

His medical history is discussed online. Apparently he suffered repeatedly throughout life, suggesting “genetic risk”. His symptoms included chest pain, heart palpitations, stomach upsets, headaches, malaise, vertigo, dizziness, muscle spasms, tremors, vomiting, cramps, bloating and fatigue, all described in beriberi. He was treated by a Dr. James Gully, whose therapy included “a strict diet” that was reported to give Darwin “improvement in his symptoms”. In September 1849 his symptoms increased, apparently “during the excitement of a British Association for the Advancement of Science”. Excitement is a brain perception whose function elevates the brain from a resting state and requires increased energy to adapt. Between the ages of 56 and 57 symptoms were reportedly continuous and the text described “copious and very pallid urine”. Cellular energy is dependent on an efficient consumption of oxygen (oxidation) and the yellow pigment that gives urine its characteristic color is known as urochrome, an oxidation product of hemoglobin. It suggests that the pallid urine may well have been an indicator of decreased oxidative function. Perhaps we can hypothesize that the exacerbation of symptoms related to virtually any form of stress may well have been from a combination of dietary deficiency and genetic risk.

Mozart

The medical history of this genius is less clear online than that of Darwin. He suffered poor health throughout life, again suggesting genetic risk. Between 1789 and 1790, the symptoms described were weakness, headaches, fainting and hyperactivity and he reportedly had many falls. A left temporal fracture was described in his skull, examined after his death, suggesting a fall injury. Also, it was reported that “drinking was a well-known weakness of Mozart”. The association of alcohol with thiamine deficiency is well documented. It produces functional changes  in the automatic brain controls of the autonomic  nervous system  that might not necessarily result in loss of intellectual function, at least in the early stages.

Beethoven

His medical history is also less clear but apart from his well known deafness, the text reported repeated diarrhea, abdominal pain, migraine, rheumatism, nosebleeds and he died in delirium at the age of 56.

Of course, I am well aware of the multiple theories to explain the medical problems of these three geniuses. My point is that the workload exercises the brain and its function requires energy. It seems reasonable to suggest that the brain of a genius requires more energy than one less well endowed. Furthermore the passion that goes into the work often makes diet a secondary issue that is frequently neglected by such individuals. In the case of Mozart, the depletion of thiamine by alcohol would also have a deleterious effect on energy metabolism.

Neurodegenerative Disease and Thiamine

We know that thiamine metabolism is involved in the pathology of Alzheimer’s and Parkinson’s diseases. This has been shown in many papers published in the medical literature. An Italian doctor by the name of Costantini has published a number of manuscripts using high-dose thiamine in no less than seven different disease conditions, most of which are described as neurodegenerative diseases. Obviously, this is extremely offensive to the present medical model that believes each disease has a separate cause demanding specific treatment for each. If we look at the biochemistry of the human body, think of its complexity, its extraordinary dependence on a combination of genetic integrity, nutrition and lifestyle, it becomes easier to understand how a single molecule (thiamine) can be so vital. It stands at the gateway of the biochemical machinery that synthesizes energy in the form of ATP.

What is Energy?

Let us take a very simple analogy, that of rolling a stone up a hill. The point is that energy is consumed by overcoming the force of gravity trying to keep the stone at the bottom of the hill. We are imbuing it with what Newton called “potential energy”. When it gets to the top of the hill a simple push can cause it to roll down the hill and this would be referred to as “kinetic” energy. Although the principles in the human body are exactly the same, the mechanism is widely different. An electric force rolls electrons up an electronic gradient that converts ADP to ATP (the top of the electronic hill). ATP is a chemical that stores energy and is sometimes called “the energy currency”. Natural food contains all the ingredients that provide us with fuel. But it also contains vitamins and essential minerals that enable our cells to turn the calorie bearing part of the food into chemical energy. The chemical energy has to be transduced to electrical energy, so the body can be defined as an electrochemical “machine”.

Dr. Marrs and I have long been concerned that concentration on many artificial foods, particularly those concerned with sugar in all its different forms, results in manifestations of disease that are being constantly overlooked and misdiagnosed. We have hypothesized that the symptoms experienced in the early stages of this kind of malnutrition are multitudinous and do not fit into our categories of so-called organic disease. Often attributed to psychosomatic causes, and the prevailing inability to recognize its true underlying mechanisms, has led to frequent doctor shopping by people that have genuine disability. They go from specialist to specialist, all of whom have resolutely decided that vitamin deficiency in America is a thing of the past.

What can you do?

First of all, recognize that dietary mayhem, particularly in children, is common. This results in loss of cellular energy that has its main relevance in the energy consuming brain. Chronic fatigue is perhaps the commonest symptom, but heart palpitations, headache, cold and heat intolerance and other functional symptoms may occur. The peculiarity of behavior observed in someone is because of distorted brain function that can vary enormously in the way it is expressed. I would suggest that if a loved one in his fifties begins to show the signs of aging discussed above, the first thing to do is remove sugar from the diet. Books have been written directing us toward a healthy diet but our pleasure loving brains have become addicted to sweet taste since the earliest beginnings of life. Therefore, because nobody objects to taking pills for their health, appropriate supplements can restore the balance between calories and vitamins. The most under appreciated vitamin (thiamine) may actually be the most important of all of them. However, if we look at the history of the treatment of beriberi, it took huge doses of vitamin B1 (thiamine) for months to restore health. A dose of 100 mg of thiamine hydrochloride, together with a similar dose of magnesium and a multivitamin might be better than all the pharmaceuticals in creation. There is abundant evidence to suggest that neglect of these functional symptoms may gradually lead to biochemical changes that are irreversible and we then call it a neurodegenerative disease.

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 credit: Gerd Altmann from Pixabay

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