thiamine chronic illness

Thiamine for Fibromyalgia, CFS/ME, Chronic Lyme, and SIBO-C

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The Road to Thiamine

In August 2020, I was at my wits end. I had developed gastroparesis in March 2020, after 10 days of metronidazole (Flagyl), for a H. Pylori infection and SIBO-C symptoms. After seven days, I developed the symptoms usually associated with the intake of this drug – nausea, confusion, anxiety, paranoid thinking and mild gastroparesis symptoms. I no longer had bowel movements initiated by my body and had to use enemas twice a week. This state continued and worsened until the end of July 2020, when I also had a surgery for stage 4 endometriosis.

I managed to stay alive those months by eating an elemental diet (90%) and a few bits of solid food such as white rice, goat cheese, or lean meat. After the surgery, however, my gastroparesis got worse. I contacted my family doctor at the end of August and told her that I could no longer eat any solid food without severe nausea and that I need to be in a hospital to be fed intravenously or with a gastric tube. She agreed that my situation demanded immediate attention and she wrote me the referral for an inpatient hospital admission.

I was lucky though that at that exact time, I stumbled upon the low oxalate diet mentioned by a member of a Facebook group. I joined the Trying Low Oxalate (TLO) group on Facebook and read what researcher Susan Owens wrote about oxalates. I started implementing it and realized that small portions of low oxalate food every 2-3 hours were accepted by my body. In a few weeks my gastroparesis symptoms were reduced and my belly pain diminished.

From the Low-Oxalate Diet to Discovering Beriberi Disease

At some point in September 2020, while researching oxalates, I found Elliot Overton’s videos on oxalates and I listened to them. I also read his articles on this website where he talks about allithiamine, a thiamine supplement that contains something called TTFD, as being something radically different in terms of its unparalleled effects on the human body. I was skeptical, because I had spent about 20,000 euro on supplements in the previous four years, each of them being promoted as health-inducing by big names in the field of chronic Lyme disease, MTHFR, CFS/ME, SIBO and so on, while their effects on my health were only partial and temporary at best.

I decided that this would be the last supplement I’d buy. The worse would be losing 40 euros and I had already spent too much on worthless treatments. I took 150 mg allithiamine + magnesium + B2 + B3 for 3 weeks and I was less tired, could move more around the house, and overall was feeling much better, even my extreme light sensitivity was subsiding. Then I stopped taking it, not sure it was doing anything. That’s when I knew that it had worked and that I needed it badly. I took the same dosage for another 2 weeks. The next three weeks I had to wait to receive it from the USA, and I was again completely bed ridden.

However, I used this time to read most of Dr. Derrick Lonsdale’s book on thiamine deficiency. I became convinced that I had dry beriberi and that most of my neurological symptoms were caused by thiamine deficiency. I also noticed that the dosage is highly individual and some individuals needed very high doses of thiamine per day in order to function.

I now understood, why 2015 was the year I became bedridden for most than 90% of the time: I spent 6 months in a very hot Asian country, as part of my master degree studies. The energy requirement to deal with the hot weather and the demanding job depleted my already low thiamine levels. At that time, I was on my way to diabetes as well. I had fasting blood sugar levels of 120 mg/dl. I could no longer assimilate/use carbs in the quantities my body required (70% of the daily caloric intake) and I was always hungry and always thirsty. Looking back on my childhood and my ever-declining health from 2008 onwards, it was clear to me that I had problems with thiamine.

The Astonishing Effects of Thiamine

In December 2020, I increased my thiamine dosage to 300 mg per day and I was astonished at the changes I experienced – an 80% reduction across all my symptoms and some even completely disappear.

Mid-January, I decided to increase my allithiamine dosage to 450-600 mg because I felt like my improvements were stagnating. I also noticed that during the days I was more physically active (meaning: I cooked food for longer that 10-15 minutes, my energy levels were higher when I was taking more allithiamine and I didn’t experience the typical post-exertional malaise I was used to in the past). I also noticed that taking allithiamine alone in high doses doesn’t work so well and that the active B complex capsules and the B3 I was taking did have an important part to play in how I felt.

In the beginning of February, I was craving sugars so badly, that I gave in and bought a cake for my birthday. I ate two slices and discovered that my mental confusion, the brain fog and generally poor cognitive skills improved “overnight”. I was astonished, since I had been led to believe that “carbs are bad”, “sugar is bad” and “gluten is bad” and that the problem was with the food itself rather than with my body missing some vital nutrients. I didn’t experience any side effects from the gluten either, even though my food intolerance test shows a mild reaction to gluten containing cereals.

By February 20th, this high-dose allithiamine ‘protocol’ and the ability to eat carbs again, eliminated all of my symptoms of SIBO-C/IBS-D/slow transit constipation, endometriosis, CFS/ME, fibromyalgia, constant complicated migraine with aura, severe food intolerances, including a reversal of my poor cognitive skills. I was able to discuss highly philosophical concepts again, for one hour, without suffering from headaches and insomnia.

Early Metabolic and Mitochondrial Myopathies

On February 21st, I decided to go for a walk. I walked in total that day 500 meters AND walked up four flights of stairs, because I live on the 4th floor without an elevator. By the end of that day, my disease returned and I became bedridden again. I could not believe it. This was the only thing I did differently. I just walked slowly.

And so I searched the internet for “genetic muscle disease”, because my sister shares the same pattern of symptoms. A new world opened before my eyes. I found out that in the medical literature, exercise intolerance, post-exertional malaise and chronic fatigue are well known facts and are described in conditions known as “myopathies”. That there are several causes for myopathy and that they can be acquired (vitamin D or B1 deficiency, toxic substances impacting the mitochondria, vaccines and so on) or inherited. It was also interesting to find out that while doctors manifestly despise and disbelieve CFS/ME symptoms, they are not utterly unknown and unheard of or the product of “sick” minds.

When I read this paper, although old and maybe not completely accurate in the diagnostics, I understood everything about my health issues.

I remembered my mother telling me that my pediatrician said he suspected muscular dystrophy when I was one years old, because I could not gain weight. I weighed only 7 kg at the age of one year, but he wasn’t convinced and so no tests were done in communist Romania. In addition to being overly thin, throughout my childhood, I always had this “limit” that I couldn’t go past when walking uphill or if I ran up a few flights of stairs, no matter how fit and in shape I was. Otherwise, I would develop muscle weakness such that my muscles felt like jelly. I would become completely out of breath, which I now know is air hunger. I couldn’t climb slightly steeper slopes without stopping 2/3 of the way up. My heart would beat very hard and very fast. I would feel like I was out of air and collapse. I first experienced this at the age of 5-6 and these symptoms have been the main feature of my physical distress since.

Because of these symptoms, I have led a predominantly sedentary lifestyle with occasional physical activity, never daily, apart from sitting in a chair at school. I didn’t play with classmates for more than 5 minutes. I couldn’t participate in physical education classes. Any prolonged daily physical activity led to general weakness, muscle cramps, prolonged muscle “fever”, and so I avoided them.

Now, I know why. Since reading this article, I was able to present my entire medical history to a neurologist and my symptoms were instantly recognized as those of an inherited mitochondrial or metabolic myopathy. I am currently waiting for the results of the genetic tests ordered by the neurologist, which will make it possible to get the right types of treatments when in a medical setting.

Before Thiamine: A Long History of Unexplained Health Issues

In addition to the problems with gaining weight and inability to be active, I had enuresis until 9 years old, along with frequent dental infections, and otitis. I had pain in my throat every winter, all winter and low blood pressure all the time. At 14 years of age, I weighed about 43-45 kg. I remained at that weight until age 27. I had a skeletal appearance. I also had, and continue to have, very flexible joints. For example, my right thumb is stuck at 90 degrees, which I have to press in the middle to release. I can feel the bone repositioning and going into the joint. This happens at least once a week.

My diet was ovo-lacto-vegetarian diet, with 70% of the calories coming from carbohydrates from when I was able to eat until 2015. In 2015, I could no longer process carbohydrate due to severe thiamine deficiency.

Since the age of 18, I have had quasi-constant back pain in the thoracic area. I have stretch marks on thighs, but have had no sudden weight gain/loss. Among the various diagnoses I had received before the age of 18 years old:

  • Idiopathic scoliosis – age 18. No treatment.
  • Iron deficiency anemia – at 18. Treatment with iron-containing supplements. No result.
  • Frequent treatments for infections (antibiotics)
  • Fasting hypoglycemia (until 2015).

The Fibromyalgia Pit

In 2008, my “fibromyalgia” symptoms began, although looking back at my history, many of these symptoms were there all along. I made a big change in my physical activity levels and this began my 12 year decline in health. In 2008, I started my philosophy studies at the university and decided to get more “in shape” by walking daily to and from the university. A total of 6 km per day.

  • Constant fatigue, no energy.
  • Worsened back pain.
  • Weak leg muscles at the end of the day.
  • Frequent nightmares from which I could never wake up. I felt like I couldn’t find my way out of sleep. After waking up, I would sit down and after 10 minutes I found that my head had fallen on my chest and I had fallen asleep involuntarily, suddenly.
  • Sensations of waves of vibrations passing through me from head to toe, followed by the sensation of violent “coming out” of the body and out-of-body experiences.
  • Heightened menstrual symptoms.
  • Fairly frequent headaches.

Over the summer, I recovered completely as I resumed my predominantly sedentary lifestyle. Then, in the fall, I began walking to and from university again, and my symptoms just got worse. This cycle continued for the next few years. My symptom list expanded to include:

  • Migrating joint pains.
  • Frequent knee tendinitis.
  • Pain in the heels.
  • Generalized pain, muscles, joints, bones.
  • Frequent headaches.
  • Sleep disturbance with insomnia beginning at 2-3am every night.
  • Frequent thirst, increased water intake (3-4 l/day).
  • Frequent urination, especially at night (woken 2-3 times).
  • Bumping my hands on doors/door frames.
  • Unstable ankles.
  • Painful “dry” rubbing sensation in hip/femur joint.
  • Prolonged angry spells.
  • Memory problems (gaps).
  • Difficulty learning new languages.

I underwent a number of tests including, blood tests, X-ray + MRI of the spine, and a neurological consultation. All that came back was high cholesterol (180 LDL, 60 HDL), low calcium, iron deficiency anemia, scoliosis, and hypoglycemia. No treatment was offered.

From February 2010-August 2010 I had a scholarship in Portugal. Philology studies interrupted. I was using public transport to go to classes, which were about only 3 hours a day. I required bed rest outside classes with only the occasional walk. I had a complete remission of all symptoms in July 2010 when I returned home and resumed my sedentary lifestyle. This was the last complete remission.

From August 2010 – December 2010, I resumed day courses at both universities and resumed the walking.

All of my symptoms were aggravated enough that by December I was bedridden. I stopped attending classes due to back pain in sitting position. I wrote two dissertations lying in bed. Once again, I sought medical advice and had a number of tests and consultations with specialists. I was diagnosed with peripheral polyneuropathy and “stress intolerance”, fibromyalgia. The treatment offered included:

  • Medical gymnastics: aerobics, yoga and meditation presumably to get me in shape and calm me down.
  • Calcium and iron supplementation, gabapentin, and low-dose mirtazapine.

The physical activity worsened symptoms, as it always does. The mirtazapine improved my sleep. I took it for 2 weeks and then stopped because I was gaining weight extremely fast.

From 2011 – October 2012, I was almost completely bedridden. I had to take a year off because I couldn’t learn anything, my head hurt if I tried.  The physical symptoms improved after about a year, as did the deep and total fatigue. I tried to get my driver’s license in 2012, but failed. I couldn’t remember the maneuvers and the order in which to perform them. I couldn’t concentrate consistently on what was happening on the road. There was too much information to process very quickly.

From 2012-2015, I was getting my master’s in France. This aggravated all of my symptoms of exertion, both physical and intellectual. In 2013, I underwent general anesthesia for a laparoscopic surgery due to endometriosis, after which something changed in my body and I never fully recovered to previous levels of health. I took another year break between the two years of master’s studies. I couldn’t learn anymore. Symptoms relieved a bit by this break. After three months in Thailand for a mandatory internship, in one of the most polluted cities in the world, I got sick and developed persistent headache, with very severe cognitive difficulties. At this point, 90% of my time was spent in bed.

A general anesthetic in the autumn of 2015 for a nose tumor biopsy was the “coup de grâce”. Since then, I only partially recovered a few hours after a fluid infusion in the emergency ward and a magnesium infusion during a hospital stay in Charites Berlin in 2016. Other improvements: daily infusions of 1-2 hours with vitamins or ceftriaxone.

How I Feel Since Discovering Thiamine

In order to recover from the crash I experienced in February, I increased my B1 (TTFD) intake mid-March and made sure I was eating carbs every three hours, including during the night. I need about 70% of my total caloric intake to come from carbs.

I am currently taking 1200 mg B1 as TTFD, divided in 4 doses, 600-1200 mg magnesium, 500 mg B2/riboflavin, 3 capsules of an active, methylated B vitamin complex, 80-200 mg Nicotinamide 3X per day and 1-2 capsules of a multi-mineral and a multi-vitamin. I make sure I eat enough proteins, especially from pork meat, because it contains high amounts of BCAAs and helps me rebuild muscles.

I walked again the last week of April 2021, 500m in one day, because of a doctor’s appointment. I did not experience a crash that day or the following days. I did not have to spend weeks recovering from very light physical activity.

I can now use my eye muscles again, and read or talk with people online. I can cook one hour every day without worsening my condition.

After 5 years of constant insomnia, only slightly and temporarily alleviated by supplements, I can finally sleep 7.5 hours every night again. I no longer wake up 4-5 times a night.

My wounds are healing and my skin is no longer extremely dry and cracked.

My endometriosis, SIBO-C, gastroparesis, food intolerances, “fibromyalgia” pain, muscle pain due to hypermobility, are all gone.

And to think that all of this was possible because of vitamin B1 or thiamine, in the form of TTFD and that I almost didn’t buy it, because I no longer believed in that ONE supplement that would help me!

I will always be grateful for the work Dr. Derrick Lonsdale, MD, researcher Chandler Marrs, PhD and Elliot Overton, Dip CNM CFMP, have done so far in understanding, treating and educating others about chronic illnesses. More than anything, more than any physical improvement I experienced so far thanks to their work, what I gained was truth. Truth about a missing link, multiple diseases being present at one time and about why I have been sick my entire life.

Physical Symptoms and Diagnoses Prior to Taking Thiamine

  • Fibromyalgia and polyneuropathy diagnostic and mild, intermittent IBS-C since 2010;
  • Endometriosis symptoms aggravating every year, two surgeries, stage 4 endometriosis in 2020;
  • Surgeries under general anesthesia severely worsened my illness and set my energy levels even lower than they were before;
  • CFS/ME symptoms, hyperglycemia/pre-diabetes, constant 2-3 hours of insomnia per night and constant 24/7 headache since 2015, following an infection and during my stay in a very hot climate;
  • POTS, Dysautonomia, Post Exertional Malaise Symptoms from minor activities, starting with 2016;
  • Increased food intolerances (gluten, dairy, sugar/sweets, histamine, FODMAPs, oxalates, Sulphur-rich foods), to the point of eating only 6 foods since 2018;
  • Chronic Lyme disease diagnostic based on positive ELISA and WB test for IgM, three months in a row, in 2017;
  • Weight gain and inability to lose weight after heavy antibiotic treatment, skin dryness, cracking, wounds not healing even for 1.5 years, intolerance to B vitamins and hormonal preparations, since 2017;
  • Complicated migraine symptoms and aura, light intolerance, SIBO-C and IBS-D, slow intestinal transit, following a 4 month period of intermittent fasting that made me lose 14 kg, living in bed with a sleep mask on my eyes 24/7, severe muscle weakness, since 2018;
  • Two weeks recovery time after taking a 10 minute shower;
  • Gastroparesis, living on an elemental diet, in 2020;
  • All my symptoms worsened monthly, before and during my period.

Treatments Tried Prior to Thiamine

Gluten, dairy, sugar/sweets, FODMAPs, histamine, oxalate, Sulphur-rich foods/supplements free diets; AIP, SCD, Wahl’s protocol, candida diets; high dose I.V. vitamins and antibiotics, oral vitamins and antibiotics, liver supplements and herbs, natural antibiotics (S. Buhner’s protocol), MTHFR supplements, alkalizing diet, essential oils, MCAS/MCAD treatment, SIBO/dysbiosis diets and protocols, insomnia supplements, and any other combination of supplements touted as helpful for such symptoms.

And this is just what I remember top of my head. Their effect was, at best: preventing further deterioration of my body, but healing was not present.

Additional Literature

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Image by Gordon Johnson from Pixabay.

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

39 Comments

  1. Hi there thank you so much for sharing your health journey. I have been trying to heal from Lyme since my diagnosis 2.5 years ago. I share a lot of similar symptoms you expressed (debilitating neuropathy, fatigue, extreme pms, gastroparesis, chronic constipation, abdominal pain, food sensitivities, slow wound healing/bruising, etc) & my latest micronutrients test is showing low b1 cellularly & low isoleucine serum. If you’d be willing to talk with me I’d love to discuss more on how you recovered. I hope you are doing much better & I’m sorry you’ve had to struggle through this. ❤️‍?

    • Hi Anna,

      I’ve been spent years (better said – wasted) trying to fix the chronic Lyme and expecting some minimal results which never came. Anytime I felt better it was because the i.v. (with antibiotics or vitamins) temporarily fixed hypovolemia or because I was spending weeks/months lying down in bed, thus avoiding having my brain suffer from lower levels of blood (oxygen).

      I’m doing very well since I started taking dysautonomia and orthostatic intolerance (POTS) seriously and added 8-10 grams of salt per day. Also, taking iron daily in higher doses (along vitamin C and lactoferrin to improve absorption) seems to be the the one thing I never thought of doing because nobody talks about iron deficiency/anemia. Despite plenty of research indicating anemia as a triggering/contributing factor to orthostatic intolerance.

      Just yesterday I walked 5 km with a constant heart rate of about 126 BPM.

      I’ll reply to your e-mail that you used to post this comment and will give you my telegram contact.

  2. Hello. If you see this – how are you doing these days? Your story was very inspiring. How long were you on B1 before you noticed improvements and how did you know when to increase the dose? Thank you very much.

    • Hi Anna,

      My symptoms were improved in the first few weeks of both TTFD and dicalcium phosphate (contained in the capsules from Ecological Formulas).
      I assume now that the calcium was needed to bind to the oxalates in blood and thus reducing anemia. Oxalates bind to both calcium and iron, but have a stronger binding affinity to calcium, leaving the iron to be there and do its job.
      I increased or decreased my dosage in order to see the effects.

      I’m planning to write what I’ve been doing this year and what are the other things I observed/got me to be much better.

  3. Paul,
    There is credence to question, research and speak out on these matters. Much of what you say is well documented. And, those with discernment; though perhaps lacking the knowledge or formal study, are well aware of a history of nefarious activity that continues to present day. Keep sharing. The simplified summaries, links and specific titles are especially helpful. I’ll add that if a voice is censored, seek it out and listen.

  4. Thank you so much for sharing your story. Your symptoms are identical to mine. I would love to try B1 but am nervous about the sulphur content. It causes huge migraines and sickness in consuming anything sulphur related. I see you mentioned having issues with allergies. Did you have any problems at all?

    • I did not experience issues with it, even though I had intolerance to sulphur containing foods and supplements.

      But everyone is different.

    • You need molybdenum to process sulfur. And keep in mind, that most foods that you ‘may’ already be eating contain sulfur-based amino acids (methionine and cysteine), so it may be just this form of thiamine that you react to. I did as well — couldn’t tolerate the allithiamine AT ALL, but can tolerate regular or benfotiamine.

  5. If your health shows ANY deviation, think of energy production, particularly in brain. Energy deficiency appears to be THE cause of health failure. I think that is why Overton is so successful with thiamine and why TTFD appears to be beneficial in any health deviation. Perhaps we are collectively wrong in determining that each disease has its specific cause and specific treatment, whereas ENERGY DEFICIENCY is the underlying true cause. Perhaps the variable symptoms are merely expressions of the distribution and severity of the deficiency. As long ago as 1952, a publication in a top-notch medical journal claimed that 250 diseases had been partially or completely successfully treated with thiamine. It literally screams for research! It strongly suggests that ANY form of stress (infection, trauma, prolonged mental action) demands a response from the body that consumes energy to fight it and restore homeostasis. The symptoms are evidence that a defensive action has been started and we call that “illness”. Selye proved the General Adaptation Syndrome in animal studies 80 years ago and said that human diseases were “diseases of adaptation”. We have failed to realize that nutrition is the ONLY source of energy production. Thiamine is an essential ingredient of organic diet and is fundamental to production of the mysterious stuff called ENERGY. We know that even a genetically determined phenomenon may require a “stress factor” (requiring energy) for it to express disease and that epigenetic treatment is possible, using nutrients.

    • Hi Tamas,

      I was tested for Bartonella by my Lyme disease doctors in 2017. The tests came back negative but they said nonetheless my symptoms fit the bartonella clinical picture and diagnosed me with it. Then I received the typical chronic Lyme treatments and supplements for about 2 years.

      Unfortunately, in the chronic Lyme there’s little to no knowledge about other diseases that manifest as multi-system disease, such as chronic B1 deficiency, mitochondrial diseases and so on. It’s a pity. Those doctors could help a lot of people for whom treatment does nothing much.

      M

  6. Hi! I am so happy for you. I am from Romania, diagnosed with Lyme disease with very similar symptoms. How can I contact you? Thanks.

    • Hi,
      I was diagnosed with Lyme disease too, based on IgM ELISA and WB that were positive 3 months in a row in 2017. But the treatment didn’t work and all the side effects that I was told were Herxheimer reactions were just side effects from the antibiotics – I know better now.

      The only thing that helped were the fluids that I got when I was receiving i.v. Ceftriaxone. Every time I received i.v. fluids (with magnesium, Ceftriaxone or just plain fluids) I felt better for a few hours every day.

      I will write to you via e-mail since I only have e-mail and TG.

    • Hi Annmarie, yes we can talk more if you want. I’ll write to you.
      I no longer have social media, just an email address and Telegram.

  7. Late to this post…

    AMAZING results. Very glad to have pointed you in the right direction so that you could learn about the work here and make such great progress.

    Some people criticize me for my hyper-focus on TTFD and thiamine, say that I am simply trying to sell yet another product.

    But like Dr Lonsdale mentioned above… your story is not at all uncommon. I see this ALL THE TIME. TTFD is really very special and unique in its ability to restore energy metabolism. It never fails to amaze me.

    Thanks so much for sharing and wishing you the best in your health journey!

    • Hi Elliot,

      I’m also happy that you exist, that you have a deeply logical approach to diseases and that you decided to put on YT the results of your research.

      It’s a pity that there are so few practitioners that focus on TTFD and thiamine.

      I hope you will create a course at some point, to share your knowledge with others who practice integrative medicine and thus more people could have access to a practitioner that understands thiamine and TTFD.

      Keep up the good work.

    • Elliot, do you know why some people can’t tolerate the TTFD form? I can tolerate other forms, but TTFD made me feel just awful…

  8. Hi M,
    i read your post and story, sounds quite familiar. You mentioned the use of antibiotics.
    Could you remember if you had a short symptom relief period after or while the antibiotics worked?
    Did your skin tone / complexion change or did you notice a change before your CFS symptoms where full on and then faded as you got into Thiamine?
    Did IV Thiamine did anything more rapidly for you? (could you feel a surge of energy whilst you were getting the iv?)

    I ask because your story sounds intimidatingly similar to how i couldn’t even find the words for about what was going on the last few years in my life as well.

    I had one treatment with doxycycline for three weeks and amidst the third week i felt like my old self again. My mind was back, razor sharp, quick witted, no weakness, stamina etc… just normal healthy again. Also my face/skin complexion did change back to healthy bronze tan, not this jaundice-anemic like color tone.

    Thanks for sharing your story. You give hope for people out there who have almost given up. Honest personal storys from people with no agenda guide you to the right direction.
    Stay strong stay wrong
    R

    • Hi R,

      I used to have 2-3 days improvement with antibiotics, only to have my symptoms slowly worsen afterwards during the prolonged antibiotic treatment. (I assume it’s because they affected my heart somehow, I always experienced dyspnea, chest pressure, etc when taking doxy or minocycline).

      If you feel better after 3 weeks of doxy, you might really deal with Lyme disease + co-infections as the primary cause or other chronic infections. Were you bit by a tick or lived in an endemic area? Did you go to a lyme specialist?

      I’ve always been pale-dark yellow in skin tone, so it’s hard to say. My skin dryness improved by 80% with allithiamine, so there’s that.

      I didn’t feel any changes in my health from iv thiamine. I felt better only from the iv itself – fluids always helped. I assume because iv fluids increase blood volume and decrease the amount of work my heart has to put in to oxygenate all tissues. Mitochondrial disease causes cardiomyopathy and heart failure – I experience(d) these symptoms since 2016, because a normal heart depends on mitochondrial burning fats in order to work properly.
      Using carbs for producing energy in the heart muscle is the first sign of heart disease as pointed out here:
      “In experimental models of pressure overload, failing human hearts have shifted from oxidizing fatty acids (the preferred substrate in the healthy heart) to oxidizing glucose for energy production.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3783139/)

      Which means, that while high dose b1 does help with burning carbs for energy, it doesn’t cure me of all of my symptoms. I am really much better, but I still have to pay attention to how much physical activity I do.

      M

  9. I have found that when I increase Thiamine, I also need to increase B12 (& ensure I get a good B-complex for the rest), because I’ve noticed that my low B12 symptoms can increase – namely pins & needles in my hands & arms, extra fatigue & breathing/air hunger issues if very low – I have to ‘consciously’ breathe, like my ANS has ‘forgotten’ how to breathe automatically. A good squirt of ‘active’ B12 drops held under my tongue for a minute & within 10 minutes or so all is back to normal.

    Because B vitamins are synergistic and all support each other in various ways, I believe that taking high doses of one isolate could potentially deplete others.

    Chronic fatigue, low motivation & the feeling of ‘wading through mud’ has been my companion for 50 years. Inability to lose weight unless I starve (but a supreme ability to store calories….?). Very weak & fragile digestion, intolerance to or inability to digest wheat/gluten, dairy, animal protein, beans, starches – well, food, basically. Very slow stomach emptying, often 8 or 9 hours or more after eating. Long-term ‘silent’ reflux, ‘cadaver’ breath, diabetes, hair loss, systemic parasites, extreme & painful gas & bloating, long-term insomnia from the nightly digestive issues & parasite activity (didn’t sleep at all last night….). I’m so tired. Tired of being tired, but also tired of this constant, relentless battle with food. And the constant ‘malnutrition induced malnutrition’ that I never seem to be able to overcome.

    I have tried taking Thiamine (HCL & Benfo) in quite high doses in the past but have not noticed any real benefit. I’m probably going to have to save up & buy some TTFD & see if that makes any difference. Or eat bucketloads of garlic…..?

    • Hi Ali,

      You’re right – taking high doses of one B vitamin could and will lead to depletion of other B vitamins. Which is why I’m taking high doses of B2 and B3 along high dose TTFD. Also relatively higher doses of methylated B vitamins.

      For the extra issues with breathing/dyspnea, I highly recommend magnesium taurate. Taurine in the magnesium taurate made a very big difference for my own dyspnea/chest tightness. I would also “forget” to breathe, especially at night.

      TTFD could help you so you just give it a try. Garlic does not have the same effect. I tried.

      M

      • AMZ, be aware that with B12, whilst some cannot absorb it very well, others can absorb it, but cannot convert it to its active forms, Methylcobalamin & Adenosylcobalamin for use at cellular level. Adenosylcobalamin is apparently the mitochondrial form. If it cannot get into the cells, how much is in the blood is irrelevant.

        As I mentioned, I have found that the more I increase the Thiamine, the more I have to increase the dual active B12 drops, or I get symptoms of low B12. The two obviously interact. So many are very B12 deficient these days, especially if they’ve taken antibiotics, Metformin & other drugs, have had digestive issues or gastric surgery, used antacids/PPI’s, eat a totally or mostly vegan/vegetarian diet or are getting older.

  10. The story told by AMZ is not at all uncommon. It is perceptive and demanded a “stick to” attitude that is the hallmark of intelligence. So readers may wonder, if it is the truth and not an attention seeking mechanism, how does a single vitamin treat so many health problems? The answer is as follows.
    All living creatures, like man-made machines, obviously require energy. Cars need gasoline: we need food. Food, just like gasoline is “ignited” but although the principles are the same, the details are widely different. Gas is ignited by a spark and glucose is “ignited” by thiamine, thus creating energy. We use energy to function. No energy, no function. The compromised energy gives rise to symptoms and taking thiamine restores energy.

    • Hi Dr Lonsdale,

      Somehow, psychosomatic believers will find a different way to fit reality into their own perceptions, regardless of how much reality works in terms of energy + function, as you describe it.

      Someone I know had (most likely) an episode of Wernicke encephalopathy due to thiamine deficiency, in his 20s-30s. He had been under a lot of stress and had experienced a lot of mental fear towards missing on life’s purposes prior to that episode. He also had had a period where he ate only potatoes for months, as a mind-body experiment.

      He believes he recovered over the years due to a “mystical” experience of absolute consciousness (or something like that). It translates basically to eliminating fear.

      He refuses to acknowledge that he did ALL the right things that tick into the thiamine deficiency correction:
      1) changed his diet to almost completely carnivore/very high protein diet (70% of all calories);
      2) spent some months in the country side (natural environment requires very little energy expenditure);
      3) from what I read from your book and articles, the center of fear (fight and flight) in the brain is THE most sensitive part of the body to thiamine, so eliminating fear meant the greatest need for thiamine disappeared.
      4) he took small doses of B vitamins, including B1, for years, besides the other things he’s done to get better.

      Taking all these things into consideration, he still is convinced that absolute consciousness *heals* absolutely and that I’m just having a “fixation” on vitamins and minerals and other nutirents. That this isn’t an universal truth, it’s just my experience – he ignores his own experience or other people’s experiences and says that my interpretation is a matter of perception (nevermind the fact that he also uses his experience alone to draw absolute conclusions).

      That whatever he experiences in bodily symptoms is not related to nutrients, because the body is an organism with uniform processes and as such, any modification is not a result of very physical processes, but the result of motivation/consciousness/not having access to the ultimate non-ego identity.

      Is there even such a thing as “uniform processes” in our bodies? What would that mean for every level of bodily function?
      Why do some people absolutely refuse on an ideological level to accept that the human body works according to very basic mechanisms which can NOT be dismissed?

      This is just to show the lengths to which some will go to defend the psychosomatic delusion.

  11. Woah, that study you found is very good! Thank you for linking to it.

    I have been wondering for a while that ‘we’ must be in the literature, and that combing through old case studies and hospital records, we must figure in there, before this became ME/CFS or hEDS or FMS etc.
    I’ve also been thinking of those with gastroparesis that are living with j-tubes. Were it not for this technology, they wouldn’t be around. Therefore, in the past… contrary to what the doctors say – this diseases can be fatal. There must be records of it.

    You may have the issue with B6 metabolism? The B6 vitamer Pyrodoxal 5′-Phosphate is the cofactor for the muscle glycogen phosphorylase, the faulty enzyme in McArdle, that they mention in the article.
    Some have PLP high in blood tests, but low intracellularly. Supplementing is tricky. It would seem that this would impact glycogen release from muscles, resulting in something that looks like a monogenetic myopathy – but it is not.
    Some also report that their B6 comes down when overall health improves.

    You may like to read Roda Barnes and Ray Peat – and thyroid. This may be the thing you need to complete your recovery.

    • Hi K,

      I have most likely a disease involving mitochondrial respiration cycle. It’s what causes me to develop lactic acidosis (5 mmol/l) after 5 minutes of wearing a N95 face mask or a surgical face mask.

      As my neurologist said, all these forms of inherited myopathies resemble each other a lot. When I read about McArdle, I’m inclined to believe I have this form of myopathy. When I read about fatty acid oxidation disorders and myopathy symptom, it’s like I have that too.

      The problem is that only mitochondrial disease will cause multi-system symptoms and illnesses, including neurocognitive ones.

      I did read the Ray Peat stuff and applied it. Vitamin B6 is useful for my ability to eat meat, but it doesn’t impact my muscle issues. Only thiamine does that.

      I believe that in the past, life was generally too harsh for people like us to be able to exist into adulthood. When life became easier in the last few centuries, more women (these “functional disorders” affect women predominantly) were able to live longer and transmit the disease further.
      A kid who had to work the land from a young age in order to live, would have died pretty quickly or at least wouldn’t have found a partner to reproduce – at least in lower classes.
      Over the last centuries, males started to prefer more slender women, who don’t get “fat”, which is also a trait of myopathies until B1 deficiency kicks in.
      So natural selection and sexual selection at work.
      (These are generalizations, of course there were exceptions and the entire process was much more complex overall)

  12. Well, M, there are various levels to this story about bacterial, viral, chemical, and other diseases and toxins against both humans and their crops.

    The books are numerous but not largely read:

    https://www.aljazeera.com/program/episode/2010/4/4/dirty-little-secrets/

    And as far as SARS-CoV2 and DARPA’s work on coronaviruses, and other BSL 3 & 4 labs, here you go:

    http://www.wrongkindofgreen.org/wp-content/uploads/2021/05/Covid_19_Militarism_and_Big_Money_Trampl.pdf

    Quoting: https://www.counterpunch.org/2018/11/21/criminal-behavior-us-may-be-developing-biological-weapons/

    The United States has great tolerance for wholesale killings. Think Hiroshima and Nagasaki. Think civilians killed in Korea, Vietnam, Afghanistan, Iraq – in U.S. wars. Think biological weapons.

    An article appearing October 4, 2018 in Science magazine deals with a U.S. Defense Department project named “Insect Allies” which began in 2017 and runs for four years. The Defense Advanced Research Projects Agency (DARPA)is providingfour U.S. Universities with $45 million in funding to enable researchers to alter the gene make-up of plants grown as crops on farms. DARPA claims to be “addressing national security challenges in agriculture domestically and abroad.” Genes are being “edited”, says DARPA, so that plants can resist diseases, drought, floods, excessive heat, or “natural or engineered harmful biological agents,”

    Yet the five authors of the report, evolutionary biologists and lawyers at German and French Universities, see the U.S. Defense Department as probably developing offensive biological-warfare capabilities. The United States, they explain, actually may be working on an innovative mechanism of genetic modification programmed to reduce productivity rather than to maintain or increase it.

    As a narrative, Baseless can be read as a modern version of Joseph Conrad’s famous novella, Heart of Darkness. But instead of the crimes of King Leopold II and the International African Association, Baker exposes the activities of a group of CIA and Pentagon proponents of biological warfare, in league with top U.S. and Canadian scientific experts, who conducted “devious, manipulative, violent operations that might affect – did affect – millions of families all over the planet.”

    Among other covert U.S. campaigns documented in the pages of this book are the deployment of biological weapons against enemy agriculture and livestock, including use of hog cholera in East Germany in 1953 and 1954; swine fever and tobacco mold in Cuba; coffee rust in Guatemala; wheat rust in Russia; and an unprecedented experimentation with biological warfare agents or their simulants on urban populations in Minneapolis, St. Louis, San Francisco, New York and other areas.

    In addition, Baker recalls and documents a long history of unethical scientific experimentation by the CIA, the Pentagon, and other U.S. agencies, from MKULTRA to the radiation experiments on countless civilians in the period after World War II. We learn about viruses that have been rendered more virulent at Army and CIA labs at Ft. Detrick and elsewhere – work that apparently still continues to this day. We learn about the plans to mass “gas blitz” Japan at the close of World War II with tens of thousands of phosgene, mustard and cyanide gas bombs, a plan that ultimately, in the shadow of Hiroshima and Nagasaki, was never implemented.

    It’s a dark and awful journey, replete with too many villains to count, but also some heroes. The villains include Frank Wisner, the head of the CIA’s Office of Policy Coordination, the center of covert special operations in the darkest years of the Cold War; Vannevar Bush, the head of the Department of Defense’s Joint Research and Development Board and “the maître d’ of biological warfare”; and WWII flying ace Jimmy Doolittle, who concluded germ warfare was necessary in the conflict with Communism, assuring the faint of heart among us, “Hitherto acceptable norms of human conduct do not apply.”

    The heroes are few, but important. There’s Democratic Congressman James Moss, who championed for years the Freedom of Information Act, which finally became law in 1966. Baker also cites Canadian scholars Stephen Endicott and Edward Hagerman (both now deceased), who wrote a 1998 book summarizing their study of the archival record surrounding the Korean War biological warfare charges.

    Baker becomes friends with the Canadians. He sees Endicott in great pain, nearing the end of his life, and thinks, “He has not killed a single person. Contrast that with the germ-warfare people… they were all killers. Killers of people, killers of villages, killers of monkeys and dogs. They devoted themselves to finding improved ways and means of killing” (pp. 291-292), but Endicott and Hagerman devoted their work to exposing the killers.

    • i firmly believe Lyme and coinfections are the result of one of these projects. It all started at Plum Island, where they did research on tick vectors. I find it hard to believe it was released on accident. they know what they did. they destroyed countless lives, including my own.

      • Hi AMZ, Wondering how many mg’s you take daily. Did I remember 600mg?
        Is Allithiamine different from Benfotimine? And how, if you know?
        Just guessing, thinking that their must be a mutated gene causing such depleation of B1. My greatgrandmother had the same problems I have. Dr’s said it was in her mind….. cause they didn’t know any better. I have sisters and cousins with same issues. Lot’s of birthdefects too. I have much more to read…Thanks to you~!!!
        Blessings~!

        • Hey,

          I’m taking 900 mg allithiamine/TTFD per day, divided in 3 doses.

          Benfotiamine and allithiamine are both fat-soluble formulations of vitamin B1.
          This video explains it in more detail:
          https://www.youtube.com/watch?v=Fx6MQpOYu44
          This article also:
          https://www.hormonesmatter.com/navigating-thiamine-supplements/

          Elliot Overton’s YT channel, EONutrition, has many videos about thiamine, mega dosing thiamine and what other things we need while we do it (such as magnesium taurate, riboflavine, other B vitamins, glutathione etc.), paradoxical reactions etc.
          You can also search this website for more articles on thiamine and other people’s experiences.

          I was checked for the main genes associated with inherited thiamine uptake diseases and they turned out to be ok.

          This is what I found about COMT polymorphism on a German website:

          “Treatment is primarily aimed at mitigating the COMT defect. This is achieved primarily by the administration of relevant substances such as amino acids (especially L-tryptophan, tyrosine, phenylalanine or 5-http) or micronutrients (especially vitamins of the B group). In addition, regular sport can also be used as a therapeutic measure. A combination of supplementation and movement is often recommended.”

          Considering the recurring infections you mentioned, I still believe that there is some genetic component related to energy production/metabolism. My sister has had a sore throat and constantly recurring infections since she was little (2-3 years old). People with MSUD (another metabolic disease) also experience more frequent colds and infections. In mitochondrial disease this is the commonest thing.

          I always had recurring throat infections during autumn/winter months, every year. I was born with a lesser degree of impaired mitochondria than my sister, which explains the difference in symptomatology.

    • p.s.: for the rest of the vitamins and minerals, whatever I can find on Amazon works just fine.
      I make sure the B complex contains methylated versions of the B vitamins, including the folate as 5-MTHF Quatrefolic.

      • Thank You for all of the info you have shared with all of us. I have much to study now. My brain no longer retains like it should, so I have to read over and over. I had lost how to find this page for weeks, just found it again. …. Researching best TTFD? K King

        • My brain is also slower than it used to be and it takes time to understand complex information.

          Glad you found the page again!

          There aren’t that many TTFD products in Europe or the States.
          In Japan they have certain products but in my opinion they are way too expensive for the amount of TTFD they contain.

          So the options are Allithiamine form Ecological Formulas and Thiamax (capsules and pure powder) from ObjectiveNutrients.
          Thiamax doesn’t contain any fillers so it’s easy to take for those who are sensitive to fillers.

          I’ve used both, but now I use Thiamax powder because it’s the best value for money.

  13. Good information, for sure. And, another Pandora’s Box just with Lyme Disease mentioned, triggering me to think, and triggering me to go all over the place with this concept of chronic illnesses, more

    . . . . “The outbreak of unusual tick-borne disease around Long Island Sound actually started in 1968, and it involved three diseases: Lyme arthritis, Rocky Mountain spotted fever, and babesiosis. A U.S. bioweapons scientist, Willy Burgdorfer, credited in 1982 with discovering the cause of Lyme disease, may have put the diseases into ticks 30 years earlier. And his report on the cause of Lyme disease may have involved a significant omission that has made it harder to diagnose or cure. The public focus on only one of the three diseases has allowed a disaster that could have been contained to become widespread.

    Newby documents in detail Burgdorfer’s work for the U.S. government giving diseases to ticks in large quantities to be used as weapons, as they have been in Cuba in 1962, for example. “He was growing microbes inside ticks, having the ticks feed on animals, and then harvesting the microbes from the animals that exhibited the level of illness the military had requested.”

    Burgdorfer published a paper in 1952 about the intentional infecting of ticks. In 2013, filmmaker Tim Grey asked him, on camera, whether the pathogen he had identified in 1982 as the cause of Lyme disease was the same one or similar or a generational mutation of the one he’d written about in 1952. Burgdorfer replied in the affirmative.

    Interviewed by Newby, Burgdorfer described his efforts to create an illness that would be difficult to test for — knowledge of which he might have shared earlier with beneficial results for those suffering.

    Newby, who has herself suffered from Lyme disease, blames the profit interests of companies and the corruption of government for the poor handling of Lyme disease. But her writing suggests to me a possibility she doesn’t raise, namely that those who know where Lyme disease came from have avoided properly addressing it because of where it came from.

    Newby assumes throughout the book that there has to have been a particular major incident near Long Island Sound, either an accident or an experiment on the public or an attack by a foreign nation. Burgdorfer reportedly claimed to another researcher that Russia stole U.S. bioweapons. Based on that and nothing else, Newby speculates that perhaps Russia attacked the United States with diseased ticks, coincidentally right in the location where the U.S. government experimented with diseased ticks.

    “What this book brings to light,” Newby writes, “is that the U.S. military has conducted thousands of experiments exploring the use of ticks and tick-borne diseases as biological weapons, and in some cases, these agents escaped into the environment. The government needs to declassify the details of these open-air bioweapons tests so that we can begin to repair the damage these pathogens are inflicting on human and animals in the ecosystem.”

    +–+

    This is the reality of many of the diseases people are facing today — governments and private corporations are working their “magic” with all sorts of pathogens, bacteria, viruses and just all those chemicals in food, clothing, air, soil, water.

    The magic is it would take a million lifetime hours to even begin to pry into this, and prove causality.

    +–+

    A 1982 book linking Plum Island and Lyme disease was The Belarus Secret: The Nazi Connection in America written by John Loftus, an attorney specializing in pursuing Nazis for the Office of Special Investigations of the U.S. Department of Justice. He tells of former “Nazi germ warfare scientists” brought to the U.S. after World War II who “experimented with poison ticks dropped from planes to spread rare diseases. I have received some information suggesting that the U.S. tested some of these poison ticks on the Plum Island artillery range during the early 1950s…Most of the germ warfare records have been shredded, but there is a top secret U.S. document confirming that ‘clandestine attacks on crops and animals’ took place at this time.”

    Loftus points to “the hypothesis that the poison ticks are the source of the Lyme disease spirochete.” And adds: “Sooner or later the whole truth will come out, but probably not in my lifetime.”

    +–+

    Michael Carroll in his best-selling book, Lab 257: The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory, definitely links Lyme disease to the federal government’s Plum Island Animal Disease Center. Plum Island is 10 miles from Old Lyme, Connecticut and a mile and a half off the North Fork of Long Island.

    There sure will be more reckonings around chronic illnesses that are covered in Hormones Matter. The autism spectrum debate? The rampant developmental disabilities in our society? The diabetes epidemic? So many other issues tied to science gone awry, for the profit motive, and nefarious ones tied to US military, and it’s DARPA — Defense Advanced Research Projects Agency .

    The reading is extensive:

    You can start here:

    https://www.counterpunch.org/2021/01/29/the-militarized-academy-knowledge-for-what/

    & continue, here: https://www.counterpunch.org/2015/10/02/the-politics-of-lyme-disease/

    +–+

    The story must continue into the current SARS-CoV2 discussion — the who, what, where, when, how, why of this very suspicious coronavirus outbreak.

    The fact is, Burgdorfer, who died in 2014, was a bioweapons researcher for the US military. He states he was tasked with breeding fleas, ticks, mosquitoes and other blood-sucking insects, and infecting them with pathogens that cause human diseases.

    I’ll start pushing Hormones Matter to open up the dialogue about the current state of affairs — lockdowns, jabs, and vaccine (sic) passports.

    https://www.globalresearch.ca/halt-covid-vaccine-prominent-scientist-tells-cdc/5744828

    In a public comment to the CDC, molecular biologist and toxicologist Dr. Janci Chunn Lindsay, Ph.D., called to immediately halt Covid vaccine production and distribution. Citing fertility, blood-clotting concerns (coagulopathy), and immune escape, Dr. Lindsay explained to the committee the scientific evidence showing that the coronavirus vaccines are not safe.

    On April 23, 2021, the CDC’s Advisory Committee on Immunization Practices held a meeting in Atlanta, Georgia. The focus of this ACIP meeting was blood clotting disorders following Covid vaccines. Dr. Janci Chunn Lindsay spoke to the CDC during the time set aside for public comment.

    The censorship on social media in particular and the internet in general is relentless. Here is a slightly edited, annotated censorship-proof transcript of Dr. Janci Chunn Lindsay’s 3-minute comment.

    You can listen to her testimony on YouTube below (for now, anyway. YouTube will likely censor it)

    https://youtu.be/6Vj3xGT6izE

    Quoting — (she had three minutes of time to state her case):

    Hi, my name is Dr. Janci Chunn Lindsay. I hold a doctorate in biochemistry and molecular biology from the University of Texas, and have over 30 years of scientific experience, primarily in toxicology and mechanistic biology.

    In the mid-1990s, I aided the development of a temporary human contraceptive vaccine which ended up causing unintended autoimmune ovarian destruction and sterility in animal test models. Despite efforts against this and sequence analyses that did not predict this.

    I strongly feel that all the gene therapy vaccines must be halted immediately due to safety concerns on several fronts.

    Covid vaccines could induce cross-reactive antibodies to syncytin, and impair fertility as well as pregnancy outcomes

    First, there is a credible reason to believe that the Covid vaccines will cross-react with the syncytin and reproductive proteins in sperm, ova, and placenta, leading to impaired fertility and impaired reproductive and gestational outcomes.

    Respected virologist Dr. Bill Gallaher, Ph.D., made excellent arguments as to why you would expect cross reaction. Due to beta sheet conformation similarities between spike proteins and syncytin-1 and syncytin-2.

    I have yet to see a single immunological study which disproves this. Despite the fact that it would literally take the manufacturers a single day to do these syncytin studies to ascertain this [once they had serum from vaccinated individuals]. It’s been over a year since the assertions were first made that this [the body attacking its own syncytin proteins due to similarity in spike protein structure] could occur.

    • Hi Paul,

      I don’t about the chronic Lyme as a “bio-weapon”. I didn’t read the book written by Newby, but I did spend some time reading through the blogs and articles claiming this (as you can find on may12.org). There’s no conclusive evidence for me that chronic Lyme is the result of a successful bio-weapon programme.

      For the rest of your comment, I admit I haven’t paid close attention to the Covid issue and I’m not capable of discussing the science.

      M

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