After 15+ months with Long COVID or Post-Acute COVID-19 Syndrome (PACS), I can honestly say that I’m grateful for the experience. Without it, I probably wouldn’t have ever realized an underlying condition that would have severely jeopardized my health. In short, Drs. Marrs and Lonsdale have saved me from a lifetime of suffering.
Like most people, I took last year’s COVID recommendations seriously. I began working from home and conducting meetings online. The only trips I took were to pick up groceries or water my plants at the office. Despite my precautions, I contracted the virus in May of 2020.
Four days after the exposure, I bent over to pick something off of the floor, and the room spun.
I’d dealt with vertigo off and on for years. I always considered dizziness to be my “early warning system.” If I was dehydrated or hungry or fatigued, dizziness let me know to care for my needs. I wasn’t surprised that a virus would intensify the experience.
Over the course of the disease, I dealt with fevers, gastrointestinal problems, loss of my senses of smell and taste, strange auditory and visual phenomena, persistent headaches that wrapped ear-to-ear across the front of my head, tingling in my arms and face, and a feeling of fatigue I had never experienced before.
On day 8, I found myself unable to rise from my chair, let alone climb the staircase. I had soiled the bed overnight and my heart rate was disturbingly high. I called a neighbor for help with the groceries I’d had delivered that morning, and she, a nursing home professional who’d recovered from the virus, listened to my symptoms and told me she thought I had COVID-19. She brought me her pulse oximeter.
Longer Term Symptoms
While the worst of the symptoms began to remit after a couple of weeks, the dizziness, the headaches, the fatigue, and the GI distress persisted for months. My vision was blurry and sounds were louder, even painfully so. I couldn’t stand for long without becoming faint, with a heart that beat out of my chest. My short-term memory was shot, and I needed alarms and lots of Post-It notes to keep me on track. I purchased and assembled a rollator, a walker on four wheels, to help me feel steadier while walking.
I began reading about Long COVID, and I found that physicians had no idea what to do for us. I learned we are much like patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), who have been mocked and ignored for decades, accused of somaticizing emotional distress — or worse yet, purely confabulating their symptoms.
Those with Long COVID would also be disregarded by the medical community, I learned from online support groups. These groups were mostly comprised of our UK brothers and sisters who’d been hit with COVID before the US was. I may never forget the harsh response one sufferer received from her physician: “What do you expect me to do about this?” Countless others were told they merely had anxiety and sent home with antidepressants and anxiolytics.
Was Nicotinic Acid the Answer?
Although I loathe watching videos (let me read the transcript, please!), I took to YouTube for help. Gez Medinger, a UK filmmaker and fellow Long Hauler, offered a series of videos on coping with the condition. I started a stack of supplements proposed by various researchers he interviewed. I went on a low-histamine diet, as we learned the virus causes over-activation of mast cells. Finally I had some hope, I thought, but “The Stack,” which featured the use of nicotinic acid (B3), offered no relief.
In January I began taking higher doses of nicotinic acid on the recommendation of a health scientist on Twitter. The research appeared sound, and it looked like deficiency of nicotinamide adenine dinucleotide (NAD+) might explain Long COVID.
Nicotinic acid gained me improved clarity of thought and concentration, as well as increased energy. (I would later learn that the heart rate and blood pressure issues I experienced after each dose were due to methylation issues, for which TMG/betaine would be immensely helpful.) I tried the ever-evolving B3 protocols, but the balance issues remained, and I continued to walk like a toddler.
Discovering Thiamine Deficiency, Beriberi and Dysautonomia
My study of Vitamin B1 started as a result of a random tweet mentioning TTFD for Long COVID. In researching it, I found this life-saving website and the collective wisdom here. I saw myself in most of the symptoms of beriberi, a disease I discovered no one remembers from the science lesson on rickets, pellagra, and scurvy. I was surprised that few people have heard of Long COVID, but the lack of awareness of beriberi was shocking. Among my friends, only a Vietnam War medic had ever heard of the disease.
I learned there was an explanation for my dizziness and balance issues: dysautonomia. This website also explained other problems I’d learned to accept over my pre-COVID years: irritable bowel syndrome, night blindness, reduced body temperature (sometimes as low as 93.7º), occasional heart palpitations, and an inability to perspire.
I also learned that the medical community largely has no answers for dysautonomia except physical therapy exercises that debilitated people like me are advised not to implement. Nonetheless, I donned compression stockings as prescribed.
Antibiotic Induced Thiamine Deficiency
How did I get beriberi? I wondered. I don’t conform to the eating patterns Drs. Lonsdale and Marrs describe. After I’d developed hypoglycemia decades ago, I changed my diet to low-carb/high-protein. I am distinctly not a foodie. I see food as a health tool, not a treat, and I believed in the concept of “food as medicine.”
I don’t eat fast foods, I read labels and I don’t remember the last pizza I tasted. The most highly processed foods I’d eaten over the years were nitrate-free, organic craft chicken sausages. Lynne Campbell, a fellow beriberi sufferer who has been my rock of support and guidance throughout this thiamine adventure, had the answer. “You’ve been floxed.”
Yes, indeed, I had been. I was diagnosed with a pelvic infection many years ago, and my physicians treated me with months of antibiotics, including metronidazole, doxycycline, cephalexin, ciprofloxacin, levofloxacin, azithromycin, and nitrofurantoin. Readers of this site will recognize many of these for their thiamine-depleting potential.
I was also prescribed countless doses of fluconazole to combat fungal infections the antibiotics caused, as well as powerful medications to treat gastrointestinal upset and presumed bladder inflammation. We now know that antifungals like fluconazole, for example, can cause increases in oxidative stress, but who knows what damage was done by all of these medications?
I can’t overlook the impact of the emotional trauma as well. The horrific discovery of the original infection led me to make dramatic lifestyle changes, including physical relocation of my residence and months of legal proceedings. For a time, I used alcohol to help me fall asleep.
After a colonoscopy detected no explanations for the continued pelvic pain, an adhesiolysis was performed almost eleven months after the original infection was diagnosed. The persistent pelvic pain was not due to continued infection but to scar tissue that had developed as a result of infection.
I now believe that I developed a subclinical thiamine deficiency that grew gradually worse over the years. I was among those who Dr. Lonsdale calls “the walking sick,” and COVID, by intensifying these symptoms, made me pay attention.
The Thiamine Paradox and Recovery
I started Lipothiamine in late March of this year, and suffered through many weeks of the process known as “paradox.” The floor began to “move” on me; sometimes it felt like I was walking on water. I installed suction cup handles on my counters so I could perform activities with the other hand. Some days I was so disabled that all I could eat was mozzarella cheese sticks. There certainly was no way I could cook for myself.
Part of the misery was due to my inability to tolerate the alpha lipoic acid in the formulation, and some was caused by the above-mentioned methylation/B3 issues. But I persisted with the B1, as I knew dramatic reactions typically meant the individual is on the right track.
As my experimentation revealed I also had paradoxical reactions to the thiamine HCL in my B complex, I established that I had the transporters needed for this formulation, and I switched to 25 milligrams of HCL in late May, exactly a year since my COVID infection. Lynne and I giggled about it via Twitter direct messages. “I have the transporters! I have the transporters! Yea!”
I am now taking several 75mg doses of thiamine HCL throughout the day, increasing ever-so-slightly as I go. I learned that I can’t increase the dose except in small increments or my symptoms get worse.
I have recovered my ability to experience “goosebumps,” something I hadn’t even noticed I’d lost. And, unfortunately, I now perspire!
My breathing patterns are normal and effortless now. Prior to thiamine supplementation, I would catch myself holding my breath, and it was not unusual to wake up gasping for air.
My heart rate and body temperature are steady and I no longer have palpitations. My vision is much clearer, even in the dark. The floor almost never moves on me, except when I let my blood sugar drop or when terribly fatigued. I was recently able to use two hands to clean an overhead bedroom fan; this was something I was unable to comfortably do even before COVID.
Digestion is only rarely a problem. I suspect this is what it is like to be “normal.” I do believe supplementing with butyrate and probiotics has been helpful as well.
Lynne helped me realize the importance of tending to my potassium and calcium needs. I also added magnesium taurate to my magnesium glycinate. I continue to take “The Stack” from months ago, but in modified dosages. I take the other B vitamins separately.
Long Covid is Real and B Vitamins Are a Part of It
Long COVID is a very complicated condition with a large variety of symptoms. This is one reason why some people question the validity of the condition. However, recent research suggests there are three clusters of symptoms, with three treatment pathways. Those of us for whom the virus depleted thiamine may represent Cluster Two. Or it may be all that all Long Haulers are thiamine-depleted to some degree. We certainly know now that a viral infection can be all it takes for a B1 deficiency to manifest.
I’m still wondering about the recent speculation regarding brainstem damage in Long Haulers. Is it irreversible damage, as some say, or dysfunction caused by thiamine deficiency? There are a lot of questions for which we have no answers, but I can report that many of the people in our support groups are benefiting from thiamine, as I and others spread the word.
There is also evidence “the chronic disease [of COVID] is due to changes in the metabolism of tryptophan and the lack of niacin (NAD/NADH+).”
For me, the solution seems to be to address both B vitamins, along with the cofactors mentioned above.
I am a person of faith, which is why I emerged with my sanity from the nightmare that changed everything so many years ago. God’s mercy, I believe, also allowed me to find the breadcrumbs to eventually learn of beriberi, dysautonomia, and the thiamine remedy.
While I’m not cured yet, I couldn’t have accomplished what I have without the work of Dr. Derrick Lonsdale and Dr. Chandler Marrs, and of course the friendship and guidance of my Sister-In-Beriberi, Lynne. There are no words to express my gratitude.
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.