thiamine deficiency - light at end of tunnel

A Light at the End of the Tunnel: Uncovering Thiamine Deficiency

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Early Health Issues: Enuresis, Long Term Antibiotics, and Gardasil

My name is Eva, I am 24 years old, I am from Spain and I would like to share my story. Since I was born I have been a very healthy and active girl. The only thing to note is that I have always had frequent urination and nocturnal enuresis until I was 12 years old. At age 13, I began having frequent bouts of tonsillitis and with each episode, I was given a course of antibiotics. Eventually, I was taking antibiotics every three months along with ibuprofen continuously. At 15 years old, they gave me the human papilloma vaccine (HPV) – Gardasil.

After the vaccine, I began having fructose and sorbitol malabsorption problems and because of the frequency of antibiotics, I developed abdominal pains. I had a very pale color on my face and I was a little more tired than usual. I kept getting sore throats and at age16 they removed the nasopharyngeal tonsil /adenoids. In spite of all of this, I was living a normal life and continued to excel in school, receiving honors degree in high school.

At 18 years old, I had another course of antibiotics. This time for three months because the pus plates of my throat did not go away. I was exhausted. In the end, it was determined that I had a staphylococcus aureus resistant infection that was resistant to penicillin. I had an antibiogram, and of all the chances of antibiotics to which I was sensitive, the doctor chose levofloxacin. I was given levofloxacin for treatment of 14 days.

A few days after the treatment, in September 2012, I moved to another city to start my university studies (2 careers at a time). After a month, I got another sore throat that continued for three months. They put me on intravenous antibiotic. The doctor proposed to me to have an operation on my tonsils and I accepted. Just before the operation, I became sick again, and since they could not operate on me with an infection, he prescribed a round of amoxicillin with clavulanic acid plus levofloxacin. It had been five months since I had taken the first course of levofloxacin. This was in February 2013. After the operation, a month later, my knee and jaw began to hurt on the left side of my body. The traumatologist told me he had nothing. The dentist took my wisdom tooth, did a root canal and made dental fillings on that side, but my pain continued. I finished the course and that summer was very stressful for different reasons.

At the end of the summer, I went back to take an antibiotic for a tooth infection. A week before the beginning of the course, in September 2013, I started to feel very tired, and one night, in the middle of the street, I got dizzy and lost my sight and I had to go to the floor for a while before recovering. That’s where the nightmare began. I began to have multiple symptoms: tachycardia, nervousness, dizziness, stomach pains, intolerances, etc. At the end. I had an analysis and they gave me a diagnosis: Hashimoto’s thyroiditis. They started to treat it and at 4 months, when I was “stable” (in lab numbers), my left ankle started to hurt as if they were squeezing me with a chain. It was horrible and it started to go up to the knee, to the hip and shoulder and the pain in my mouth was worse. All on the symptoms were on my left side. The doctor said I had tendinitis, without more importance.

Over the next four months, I began to weaken. I had no strength, my legs were weak, and my mental exhaustion was increasing. I went through all kinds of doctors: rheumatologists, neurologists, internal medicine, traumatologists, and at the end, they concluded that I had fibromyalgia and chronic fatigue syndrome. That’s it. That is the best they could do and they offered no help.

Taking Matters Into My Own Hands: The Fluoroquinolone Connection

I began to read to realize that they are catch-all diagnoses, where they put people with multiple symptoms. Eventually, I found a doctor who began to treat the intestinal microbiota, to change my diet, reduce stress, etc. This was from 2014 to 2016. While it is true that I learned to manage crises so as not to live with pain 24 hours a day, I was stuck. I was still exhausted and had neuralgia on the left side of my body. So over these last two years I have tried other doctors, I have gone to neurologists specialized in amino acid biochemistry, but nobody knows why my health has declined so much. I have tried acupuncture, antioxidant therapy, etc. At the same time, I have not stopped reading, until I came to this wonderful blog two months ago, and suddenly EUREKA! Everything makes sense. Nobody had told me until now the dangers of fluoroquinolones. It is true that there are people who notice the problems of the antibiotic while taking it and have to leave it, it started a month later, but everything fits. My symptoms include:

  • Chronic fatigue which is very debilitating. I have been at home for 5 years, barely able to go out. I cannot study, work, or anything.
  • I have neuralgia / neuropathy ONLY on the LEFT SIDE of the body (no one gives meaning to this), from the head to the left toe.
  • Muscle weakness and rigidity
  • Tendinitis
  • Intolerance to histamine
  • Polyuria, urinary frequency
  • Sleep problems, sleep is not refreshing. I have epic dreaming disorder that does not let me rest. This problem of dreaming and getting up very tired has been a problem since since I was 16.
  • Problems with noise and light; I have to sleep with plugs and mask.
  • Alterations of the nervous system; I startle easily. I have a lot of intolerance to stress.
  • Problems with basic regulation of the body
  • Dizziness every time I get up when I’m sitting or lying down.
  • Recurrent pharyngitis / sinusitis / chest pain.
  • Hashimoto’s thyroiditis
  • Mental exhaustion
  • Weight loss.
  • Intestinal problems, intolerances, dysbiosis, infection by chronic GERD.
  • Swallowing problems. (The left side of my throat is more inflamed on the inside and it is hard for me to pass the food. It gets stuck).

Surely there are more symptoms, but I forget.

At the Root of My Symptoms: Severe Thiamine Deficiency

After reading the work of Dr. Lonsdale, I measured my transketolase and the result suggests quite a deficiency of thiamine: activation TPPE 25%. So I’ll see if trying this I can improve, until now I was lost and I saw the light at the end of the tunnel.

Questions for Dr. Lonsdale: Hello doctor, first of all thank you immensely for your dedication and work, thank you for your research and your book, you are helping a lot of people. I was lost until I found Hormones Matter and read it.  The activation of TPPE is at 24.98%. As I have read, this suggests quite a deficiency of thiamine. I’m going to look for a doctor who wants to help me treat my deficiency. I’ve read that you have to be careful with paradoxical reactions. But I have several questions that I would like you to answer if it is possible:

  1. The urinary frequency since I was born could have something to do with thiamine deficiency? Would this suggest some kind of genetic problem?
  2. Is supplementation with thiamine forever or only until the transketolase of 0? What is the time of supplementation with thiamine? When would I have to repeat the analysis of transketolase to see how it evolves?
  3. Could it be that levofloxacin has done me irreparable damage and I always had thiamine problems? Or can it be something genetic? – What is the suggested treatment?
  4. I have read about 50mg Allithiamine, with large doses of magnesium and a multivitamin, but how high should Allithiamine go – 200mg, 300mg?
  5. What do I do in the face of a paradoxical reaction? Do I stop the supplementation a few days and continue again, or to endure the reaction and continue? I want to give this information to the doctor who will treat me, in addition to his book.
  6. Does it make sense to have only neuralgia on the left side of the body? It is as if I had two bodies, the joints on the right side do not hurt, nor the nerves, only on the left side. I do not have anyone in the family with a similar background. My maternal grandfather was an alcoholic but he managed to quit. My maternal grandmother, 2 aunts and my mother have hypertension. And on my father’s side, my grandmother has always been tired from a young age, with pains and thyroid problems.

Thank you very much, Eva.

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  1. Hi Eva, sorry to hear about your experience with antibiotics, I have also taken levofloxacin and had horrible side effects such as the first night I felt like I was lifting when falling asleep, tendonitis in the elbow, right hip, and left thigh, I snapped tree tendons one in right and left wrist and middle finger.
    first two years U could walk far, I heart chest pain and breathlessness, then I developed gastrointestinal beriberi I also had nerve itch on upper arms, the bottom of my butt, and tingling sensation in the brain.

    I then got SIBO, I have had anorexia most of my life and suffered from malabsorption, recently I asked my GP for a script of thiamine 100mg injections, it took 8 months to convince him I have malabsorption as we do not have transketolase testing in Australia. He then went ahead and I got the script, I took this script to 5 different chemists and they said we don’t have any and they said they have never had a script for thiamine injections. finally and lastly I rang chemist warehouse and they rang the suppliers from Melbourne, they sent me a pack of 10 thiamine 100mg injections. I had one injection once a week for 4 weeks, I am no longer constipated and feel hungry, which is amazing, I now need to order either benfotiamine or alithiamine, but very difficult as we don’t have them here in Sydney, I asked the vitamin shop to order, still waiting. If you are not tolerating vitamins orally ask for injection or IV? Have you been tested for SIBO?

  2. I am so overjoyed to be able to finally make sense of how important thiamine is for my and my family’s health. It explains more than anything else, after so many years of searching.

    I would love some advice on how to supplement with magnesium. I respond extremely well to it, but my husband has always had adverse reactions to every form we’ve tried, even Epsom Salt baths cause him pronounced muscle tension and soreness. I know he has issues with glutamate, and we’ve seen a tremendous reduction in his problems across the board by adopting a low glutamate diet, but it’s so impractical, so it has long since been abandoned. Things that cleared up were: snoring/sleep apnea, atrial fib, depression, and anger/irritability issues. I am very much inclined to think that thiamine deficiency is at the root, here, and that it explains why he reacts paradoxically to magnesium.

    We have been very leery of him taking magnesium because of all this, so any insight and recommendations on proceeding would be very much appreciated! Thank you, Dr Lonsdale for your work and continued dedication to this topic!!

  3. To Eva and Lisa: yes indeed, you both have the same underlying cause. In fact there must be millions of people in America that are suffering in a similar fashion. Both of you need to obtain our book on thiamine deficiency disease, available on Amazon books. I will give an outline that hopefully will give you some understanding, before I answer Eva’s specific questions. What a number of commonly used drugs do is to damage mitochondria. Gardasil vaccination also has the same action, as do a number of vaccines. The lower part of the human brain, sometimes known as the hindbrain is peculiarly sensitive to thiamine deficiency and the mitochondria grind to a halt without it. The resultant disease is beriberi (translation, I can’t I can’t). This part of the brain controls the autonomic nervous system, an automatic messenger system that goes to all the internal organs of the body. For this reason, beriberi can produce virtually any symptom you like to name and we know from history that it has a long morbidity and a low mortality. This means that you can suffer for years without any recognition. The system is asymmetric and explains why symptoms can be confined to one side of the body.
    Eva’s questions
    1. Urinary frequency: yes this does suggest a genetic background. One of the common ones is an absence of a protein that acts as a transporter, enabling thiamine to enter cells. The family history of alcoholism also suggests a genetic background.
    2. Obviously the objective is to continue the vitamin until all symptoms have disappeared. Since you probably have a genetic background the supplement will have to be continued but since it is completely non-toxic and cheap, why not? You need thiamine, magnesium and a multivitamin to make sure that you cover the non-caloric nutrients
    3. We do not have all the answers. I have given the treatment in question 2.
    4. 200 to 300 mg of Allithiamine is fine after you have run through the paradox.
    5. Paradox is the best possible clue to your ultimate recovery. Just suffer it through. It can last as long as four or five weeks but is totally unpredictable.
    6. Because the brain has asymmetric functions, pain in the left side makes sense. But remember that it does not behave like that when energy metabolism is normal. The reason that there are so many symptoms from thiamine deficiency is that virtually any cell can be affected and this is particularly true of brain cells.Yes, hypertension can be from thiamine deficiency. This is brand-new in medical research.

    • Thank you very much indeed for answering me Dr. Lonsdale, for his dedication, is helping many people. I’m sure that in the future all your research will be in the place it deserves.

      I will report on my progress.


      • Whenever I make a comment and read it over, it always seems to be incomplete. For example, I mentioned above that a number of drugs damage mitochondria, so why do I suggest that thiamine is the key? Yes, it is indeed true that cellular metabolism in the human body is dependent on all of the vitamins and essential minerals, so why pick thiamine and magnesium deficiency as a major cause of mitochondrial dysfunction? It is taken from my studies of the history of the discovery that this deficiency had been the cause of a disease that had affected humans for thousands of years. Epidemics of beriberi had occurred in the summer months. Groups of factory workers had come down with the first symptoms of the disease at the same time when they were suddenly exposed to the rays of the sun while taking their lunch in the corridors between factory buildings. It was natural for the investigators to assume for years that beriberi was due to a mysterious infection. A dietary deficiency as the cause took many years to come into focus and in terms of history, that was only “yesterday”. We must remember the old proverb, “those that forget history are condemned to repeat it”. The simplicity of an explanation for so many symptoms (ascribed to many different diseases in the present medical model) obviously is not easy to accept. Suffice it to say that thiamine and magnesium stand astride the major mechanisms that produce cellular energy. Without energy, there is no life so it is hardly surprising that the brain will begin to react when that energy synthesis is endangered. It tries to notify the owner of the brain that there is a new danger to be recognized.Now we know that ultraviolet light (sunlight) is very stressful to the human body. It demands a large influx of energy to adapt to that stress. We can conclude that groups of humans developing symptoms of beriberi at the same time, when exposed to sunlight were marginally deficient in thiamine and were unable to muster the necessary adaptive energy. This applies to virtually any form of stress and we can begin to understand why a vaccination, a medication, an infection or any other form of attack can precipitate symptoms that are indirectly caused by a failure to muster the necessary energy for defense. The toxicity of medication, or the symptoms related to infection, are directly related to the success or failure of adaptive energy.

        • This makes sense to me. I live in a beach area, and I’ve been noticing for years that when I get a lot of sun on the beach, I get sick with the flu (weakness, tonsillitis, fever). In fact, many times I have returned from the beach with angina fever and I had to take an antibiotic. I always said “the sun lowers my defenses”, now I see that it was a whole vicious circle.

      • Hi Eva, this is the first time I’m on the website. Your story sounds VERY similar to my 27 year old son. How are you feeling now? We’re you able to fully recover? God bless you. Linda

        • I’m so sorry for your son. i’m Now 27 tío.I have not recovered. I could not tolerate the thiamine treatment either, my intestine hurt a lot (I have many intolerances). my diagnosis is from sfc / em

  4. Eva,
    I’m sorry for all that you are going through. Your story sounds similar to mine. I wrote about it here, too (Connecting the Dots). I have yet to find a doctor that understands it, but I’m working with one who seems willing to learn. Feel free to email me. You are not alone. Sadly, I think there are a great many of us out there. I hope you find some answers and relief.

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