recovering from long covid with thiamine

Recovering from Long Covid with Thiamine

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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.

Acute Covid

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.

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39 Comments

  1. The Niacin based therapy referenced in the article, is by someone who is not a PhD, and was removed out of his program by the sponsor. He is a MPH. This may not discount his theory and research, but it’s probably best taken with some caution.

  2. Hi Barb!

    I am long covid seven months now with fatigue, insomnia and anxiety. I do have a functional medical physician but like most others he really doesn’t understand the long haul symptoms and how to treat them. So we work together on trying to heal my symptoms in hopes to get me back to more energy, back to work and the gym!!!

    I have some questions that I hope you can give me your advice or personal experience on.

    How do you find out if you are a over-methylator or under-methylator? And what does all that mean?

    Is there any bloodwork that you know of that reveals thiamine deficiency or other important labs to help guide my treatment plan to recovery?

    How do you know which thiamine to start and how do you know if you need to increase dosage or not? There are several to choose from. Starting with Lipothiamine seems like the best idea since it crosses that blood brain barrier correct?

    Do you take the Butyrate after every meal or just once per day?

    Where can I find information on what other vitamins thiamine works with or needs for transport/support?

    Thank you,
    Catherine

    • Hi, Catherine.

      To answer your question from below, I am currently taking doses of 50 mg of riboflavin roughly an hour apart for as long as I’m awake. Some people in our Facebook groups (Understanding Mitochondrial Nutrients and Thiamine [Vitamin B1] Deficiency) maintain that we should be taking identical doses of B1 and B2; I can’t speak to that but increasing the B2 has been very helpful and may lead to a slight reduction in my B1 doses. We shall see.

      Dr Lonsdale wrote a piece on measurement of B1 here. https://www.hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ He repeatedly recommends starting the B1 and seeing if you see improvement. (There are a lot of gems in the comments sections of this site.)

      I did a search for information on under- and over-methylation. The personality characteristics described me almost to a T.

      Yes, Lipothiamine is generally recommended here. I was able to use B1 HCL since I am lucky enough to have the transporters that allow thiamine to enter the cells.

      I take butyrate once per day or every other day, but when my gut was acting up I used it twice per day.

      I’m no expert here, just someone learning to correct what COVID did to my body, but the general advice is to make sure potassium, magnesium, riboflavin, and calcium levels are solid. Methylated B complexes are also often recommended, as the Bs rely on each other to produce results. Again, the Facebook groups are very beneficial in providing one with individual users’ experiences. You may also wish to research Elliot Overton, another thiamine expert, re: cofactors he recommends.

      I am super-happy to hear you have a physician who’ll work with you on overcoming Long COVID. Just be careful about resuming activity (“the gym”) too quickly. Post-exertional malaise is real. I suspect that if we’d known more about PEM in 2020, I could have accelerated my healing. Rest is boring but vitally necessary as you recover.

      Best of luck!

      • Hi Barb,
        Thanks for sharing your story, I’m glad you are improving!

        How could one find out if s/he has the transporters that allow thiamine to enter the cells, so that they can effectively take B1 HCL?

        Thank you!

        • Hello, Sara, and thank you!

          Good question. Personally, I don’t know how one realizes this except through trial and error. Others may be able to offer input, but for me, I had discontinued lipothiamine and was awaiting the HCL to be delivered through the mail. In the meantime, I was using my B-Complex, which had 100 mg of HCL in it.

          Even at 1/2 a dose (so 50 mg of thiamine HCL), I still experienced symptoms of the re-feeding process, otherwise known as “paradox.” If I didn’t have the protein transporters, I reason, I wouldn’t have experienced anything.

          I hope that helps. 🙂

  3. Why thiamine? Covid-19 wrecks energy metabolism and thiamine is the “gatekeeper” in the body. Thiamine deficiency causes the disease known as beriberi. The Chinese word,”beri” translates as “I can’t” and it is repeated for emphasis. Severe fatigue is a salient symptom of thiamine deficiency. Because severe fatigue is an outstanding symptom in every disease, beriberi is the “great imitator”. The discovery of high dose thiamine to treat Parkinson’s disease successfully (Costatini et al) means that it is being used as a therapeutic drug, not as a vitamin. Its action is in stimulating energy production, deficiency of which is, in my view, the cause of all disease.

    • So good to see you, Dr Lonsdale!

      What a godsend it has been to happen along this site and learn from the best — you and Dr Marrs. Thank you!

    • I’ve been suffering with severe fatigue since my COVID-19 infection a year ago. The fatigue is like nothing I’ve experienced before and that seems to be the only way that I can explain it to people who then usually respond with something about how they get tired too. I also lost my sense of smell and taste which have not returned. I took two rounds of antibiotics for a sinus infection a couple of months ago and the fatigue spells are now accompanied by neuropathy and joint pain which is mostly on my right side. I’ve always been healthy and active and I eat well with zero fast food or junk food. I am 64 and take no medications but I do take vitamins and supplements. For the last several weeks I “nap” on my couch beginning at about 2:00 in the afternoon then I may watch about an hour or two of TV and then I go to bed! Oh…and I never watch TV! This is all so NOT me! I’m glad that I found this website and your information because so many of these symptoms I’m having are the same. It’s been frightening and I do have an appointment with my doctor in 10 days. I am going to read these other articles. I’m excited and hopeful. Thank you.

      • I’m so hopeful for you, Elizabeth, and I’m glad this information has been helpful. You may wish to share this site with your physician.

        I think most people mean well, but comparing COVID-19 fatigue to normal “tiredness’ is like comparing a tension headache to chronic migraines.

        Best of luck to you, and if you’d like to share your progress here, please feel free!

    • Dr. Lonsdale,
      I am 1 year post COVID and continue with breathing issues and for about 11 months now also have a tightening feeling in my throat when the breathing issue hits and it does so daily, sometimes once to three times a day. At times i also feel i have an irregular heartbeat but not daily. I have RA as well that i was diagnosed with last summer. I also have Type 2 diabetes and take 1 500mg of metformin with my evening meal. I’m a 55 year old female and in menopause for 4 1/2 years. Can you recommend something for me for my long hauler Covid symptoms? Thank you

  4. Around day 7 or 8 of my COVID I went to the hospital when my oxygen levels hit the 80’s. I was there for 3 days on oxygen and released to home where I spent another week before returning to work. My legs felt a little weak after the 3 week ordeal and I assumed it was because I had lost 20 pounds in the 21 days. My legs kept feeling weaker every day and tingling until about a month after getting out of the hospital I fell a couple of times and then could not get up out of my chair and called the ambulance. After blood tests at the hospital they found my Thiamine levels to be critically low and gave me 2 IV bags and a bag of fluids. 3 days at the hospital. I returned about 3 weeks later after falling a couple of times and hitting my head. Again low Thiamine levels even though I had been taking Thiamine. I still have weakness in my legs and issues with walking. I have not fallen in a couple of months and I use a cane or if longer distances a walker. The Doctor’s here in my area just think it is muscle atrophy from being lazy and overweight.

    • It is probably a combination of both insufficient thiamine, perhaps other vitamins that thiamine works with, and some muscle atrophy. You are lucky they tested thiamine at all, most do not. While the acute phase of thiamine deficiency can be resolved with a few IVs, the more chronic phase takes much long and often a much higher dose than is currently prescribed. I suspect your story is not unique, except you were lucky that they tested and attempted to treat the thiamine deficiency. Would you be willing to write up your case story, your health pre-covid, the covid experience, the symptoms that developed post-covid, the treatments and where you are now and allow us to publish as a post so that others might see it and glean insight?

  5. Hi Barb! How are you feeling now? I was also wondering how high of a dose of B1 you ended up taking? I am at 300mg Thiamine HCl right now and still adding a little as time goes by. What other supplements did you find most helpful? 🙂

    • Hello, Ellie. I’m feeling pretty good now that I increased my trimethyglycine, which I’d lowered in proportion to B3 (nicotinic acid) reductions I’d undertaken. It turns out I’m an under-methylator and need more TMG than I’d realized. You may wish research under- and over-methylation and see where you land.

      I also use selenium, zinc, all the Bs separately, including methyl B12 and methyl folate, l-lysine, taurine, magnesium taurate and glycinate, D3 with K2, artemisinin, quercetin with bromelain, butyric acid. Lots of long-haulers have great difficulty getting a full night’s rest, but by using l-theanine, l-serine and glycine at night, alongside magnesium, I sleep well and can dream.

      The research seems to indicate that B1 needs the support of the other B vitamins, most notably B2 (riboflavin). I take 2500 mg. of thiamine HCl in divided doses, adding another 50-100 mg if energy demands are greater on a particular day.

      Good luck on your thiamine adventure! I hope it works for you as well as it has for me!

      • How much riboflavin do you take with the 2500mg of thiamine? Do you take the Riboflavin in divided doses as well? Thank you.

  6. Hi could you help lve had covid March 20 l worked in care most of my working life .l was extremely ill diagnosed then with viral infection after all the symptoms were coming fever loose stools breathing extremely painful longs not coughing a great deal .l had 330 steroids 11 courses of antibiotics 6ltrs of oxygen frightening to stay in hospital diagnosed with lung cancer fast tracked was all clear except tissue damage to my lung through covid it will be 2 yrs now lm now under a rheumatoid arthritis as all joints and my right hand in so much oh and lve ANA factor showing up l can not walk far for breathless of which lm now diagnosed with asthma 20 months ago l was fast tracked for throat cancer breat cancer all OK although l take omaparole for years and gaviscon lm can still vomit lots of mucus lm also taking carbosisteine which helps with mucus lm now over weight lm on low carb high protein lm just interested in thiamine lve seen entries lm really at a loss hoarse still breathless upon some normal routine cleaning jobs have you any suggestions please thankyou

    • Oh I wish I could help, Colleen. You’ve been through the ringer and I’m sorry, but you would seem to require someone with a medical background. A lot of people in the Long COVID groups recommend a functional medicine or integrative medicine approach.

      The only aspects I can speak to are what I’ve read here and experienced: antibiotics can deplete thiamine, and thiamine may help with your breathlessness (see https://www.hormonesmatter.com/dyspnea-air-hunger-molecular-oxygen-consumption/). Dr Lonsdale says there is no downside to trying thiamine and seeing if you improve. I had to start with a very small amount. Good luck!

    • Hi, Nathan. One of many things I’ve learned from this site is to not mess with success. I don’t need another version, and those can be more expensive. Everyone is different.

      I know plenty of thiamine-deficient individuals do better on another product, so I’m not making any recommendations for others. I feel fortunate that I can use this one.

    • HCL is the most tolerable form of thiamine. That’s why it’s often preferred by those who have strong paradoxical reactions on thiamine.

  7. Hi Barb! Can you clarify what you mean when you say “the transporters are in place.” Thank you.

    I’m so glad you are doing well now. Are you back to normal, recovered life? Are you able to go on walks and have a full-time job?

    • Great questions, Ellie. By “I established that I have the transporters needed for this formulation,” I meant that I was genetically lucky enough to have the protein transporters that deliver thiamine HCL into the cells where it can perform its magic. Not everybody has those transporters, and that’s where the TTFD versions are necessary. I realized this by noting that my B Complex, which contained B1 HCL, caused me to experience the paradoxical (or re-feeding) reaction written about on this site. I’ll refer you to this piece by Dr Lonsdale on the different forms of thiamine. https://www.hormonesmatter.com/navigating-thiamine-supplements/

      I’d say I’m 75% on the journey toward full recovery. I still work from home, and my next goal involves building the stamina and muscle tone I lost after so many months of being bedridden. I don’t work full-time, but I didn’t before COVID-19 due to federal regulation of my industry.

      I have some tweaking to do with B2 —and potentially more increases in B1. I believe I’m turning a corner now, and I suspect the next month or two will be pivotal.

  8. Hey Barb,

    Thanks for this. As a 20 month Long Hauler it has given me some hope. I was wondering how you are getting on now?

    I have started on 25mg of TTFD a day and have seen some improvements in my fog and fatigue already but not sure if this is a placebo.

    All the best

    • Hi, Edward. IMO, there’s every reason to be hopeful.
      It’s interesting that, of all the new Long COVID supplement protocols, no one is mentioning thiamine, despite our current understanding of what a simple virus can do to thiamine levels. Sure, they mention “all the Bs are important,” but as a whole they don’t deal with dysautonomia as a significant subset of Long COVID suffering.
      And I’m more than ever of the mind that COVID can affect brainstem functioning directly by deleting B1. There are autopsy reports of brainstem damage in the COVID-deceased, but since I’m seeing significant improvements in my ability to stand, I suspect it’s not permanent.
      I’ve improved a great deal since September 1. I’ve increased my daily thiamine HCL to over 2.5 G, and I avoided most of the problems we’ve identified with insufficient B2 (riboflavin) that others have suffered, thanks to two Facebook groups, Understanding Mitochrondrial Nutrients (affiliated with this site) and Thiamine Deficiency. Even if one hates the FB platform, as I do, these private groups are invaluable. My daily dose of 100 mg B2 was not sufficient, I learned there.
      While my B1 dosage may seem high, I think it’s important to take in consideration that I’d been thiamine-depleted for over 18 years, and this damnable virus seems to attack its victims where they are weakest. Others’ mileage (dosage) may vary.
      I cannot stress how important it is to increase B1 — and B2 — gradually. I experienced more dizziness when I tried to increase B2 too quickly. I now take 25 and 50 mg doses of B2 sporadically throughout the day, as research suggests that the body cannot absorb anything above a 27 mg dose.
      Good luck, and please keep in touch!

  9. Great article! I became iron deficient, b12deficient, and vitamin D deficient. Lost 30 pounds in two months and suffer from chronic fatigue. Prior to Covid I had been pretty healthy and active. The doctors did ct scans and colonoscopy/endoscopy. All came back clear. They think malabsorption may be an issue. I wonder if Covid could have cause this storm.

    • Thank you, Jen!

      It certainly appears possible. How miserable! From my reading in these Long COVID groups, it seems that COVID strikes in myriad ways.

      In particular, the Facebook group called Butterfly Method is addressing B12 and iron imbalances that can result from the virus. The piece on clusters of Long COVID I mentioned (https://nkalex.medium.com/long-covid-dysfunction-not-damage-theory-and-treatment-concepts-853ae4e22f1a) may be of interest to you. The author, Nikita Alexandrov, administers that group. He has not looked into thiamine yet, which, as I described, has been essential for me.

      There are lots of theories as to how COVID impacts us. The best lesson I’ve learned from exploring each of them is to listen to how MY body reacts. Best of luck to you in getting well!

  10. Thank you so much for this article. I had covid in early August (6 weeks ago) and still suffering from lack of taste and smell. It’s my only symptom. I supplemented with Thiamine quite a while ago (for something unrelated), so I do have on hand Allthiamine 50mg (Ecological Formulas)… just checked and it’s still good, not expired. And do I also need Magnesium with it? I have Magnesium lysinate glycerinate chelate 100mg. I vague remember reading on this site that Thiamine should be taken with Magnesium…and no tea, right?? Any thoughts on where to start/how much Thiamine and Magnesium to take?

  11. Thanks for such an elucidating article.

    I’ve had many of the sxs you describe for many years, along with many others. My POTS flared dramatically after getting the vaccine! I’m still glad I got it, but I wonder if thiamine might help. I am reduced to eating organic turkey jerky as I can’t possibly coordinate body movements, etc. to cook. Any thoughts?

    Going low and slow on thiamine seems to be the way to start out – at least I think – even if the ultimate goal is high dose.

    • “Slow and steady” has been my guide over these few months, to be sure. And the cooking problems? Your turkey jerky was my string cheese.

      Before and sometimes after the paradox/refeeding period of B1 treatment (see https://www.hormonesmatter.com/refeeding-syndrome/), I would use a bar stool to cook. If you have one with a back on it, you’ll feel safer. The suction cup “counter handles” I used are the same you sometimes see in shower stalls. When a wave of unsteadiness came upon me these were a lifeline.

      I learned to take my time, and break down cooking into manageable tasks, between which I rested. When possible I took the foods and sat at the dining room table to prepare meals. Over the past year I have made a habit of freezing leftovers for days when all one can manage is to stumble into the kitchen.

      If you’re like me, prepared foods are a no-no. Vegetables dipped in organic hummus would serve as a reasonable protein source, I found. If you can tolerate boiled eggs and/or nut butter with celery, these are almost ideal snacks IMO.

      Unfortunately, it’s not surprising that your POTS flared up after your jab. Dr Lonsdale notes that inoculation, among other stressors, may cause a case of thiamine insufficiency to manifest into dysautonomia, of which POTS is a subtype.

      The good news is that time and patience do pay off. I was recently able to paint over my head, yes, with two hands, and replace the belt on my dryer. I hope my story gives you some hope, as Lynne’s did for me. Good luck, Syd!

  12. Oh my god this is me!! I have had consant bladder and pelvic pain since covid in decemember. But been ill for 5 years with histamine, digestive issues after being given several rounds of antibiotics arround then, and was also dealing with chemical exposure. I no longer sweat, I have balance issues, digsetive issues, my eyes hurt, feel dead inside, constant bladder issues! Who is they’re clinician I have had no insight like this, just a psyche analysis to prove I’m not a hypercondriac! I have some b1 taken a few times, will get right on it, thankyou for this article

    • You’re quite welcome, Gillian! This is why people post articles here — we’re not likely to learn this material from our physicians. It’s not their fault, in my view. Medical schools just don’t teach doctors about nutrition and vitamins, nor about the deleterious effects of massive antibiotic therapy.

      Best of luck to you in beginning your own B1 adventure!

  13. I’ve read of two people fully recover from long covid with Thiamine HCL alone. But large does of 3×500 mg per day. Hopefully this lady can increase her dose gradually and will see further benefit.

    I’m also a long hauler and have seen my POTS symptoms and tinnitus improve recently after adding Thiamine.

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