Unexplained or Medically Induced Chronic Illness?
Unexplained. That’s what doctors call chronic illness. Conventional medicine says, ‘learn to live with it.’ Rather than offer a true treatment or cure for these debilitating conditions, they suppress the immune system and offer more drugs for depression and anxiety – none of which are effective. I’m here to tell you that common wisdom is wrong. I know, because my own lucky story proves we can heal from chronic illness. Pharmaceutical insults created my disabling illnesses – Chronic Fatigue, Fibromyalgia, estrogen dominance, adrenal fatigue, POTS, Graves’ Disease, Hashimoto’s, Bell’s Palsy, infertility and more. I share my journey to offer hope. The doctors were wrong. I have recovered and am once again, healthy.
Early Clues and Pharmaceutical Insults
My childhood had some clues – things I now know predict chronic illness. My lymph glands swelled when I was otherwise healthy. Mosquito bites turned into angry 3” welts. Childhood bunions and hyper-mobile joints suggested leaky gut. All these issues correlate with chronic illness and, seen in hindsight, hint at the difficulties that awaited me in adulthood.
My immune system may have been awry from the start, but pharmaceuticals tipped the scale toward chronic illness. As a teen, I took birth control pills for heavy periods and cramps. When vague symptoms appeared in my early twenties, I asked about pill side effects. The gynecologist laughed at the idea, but I trusted my gut and finally stopped the pill. I felt better in some ways but developed new symptoms. Sleep became difficult. I was hypersensitive to noise and light and struggled with unquenchable thirst. The doctor suggested my extreme thirst stemmed from hot weather and salty foods. This explanation didn’t add up to me, but I was young and so was the internet. I had no resources to connect the dots. Today, I recognize that 10 years of hormonal birth control created nutrient deficiencies (folic acid, vitamins B2, B6, B12, C, and E, along with magnesium, selenium and zinc) while also raising my risk for future autoimmune disease.
Recurrent UTIs, Fluoroquinolones, and New Onset Graves’ Disease
A few years later, recurrent urinary tract infections led to many doses of the fluoroquinolone antibiotic, Cipro. Cipro now carries a black box warning and is known to induce mitochondrial damage. My mid twenties also brought pre and post-menstrual spotting and bleeding for 10 days each month. Doctors did nothing for my hormonal imbalance but diagnosed Graves’ disease (hyperthyroidism). Everything about me sped up. Food went right through my system. I was moody. My mind was manic at times. I was unable to rest and yet physically exhausted from a constantly racing heart.
The doctor said Graves’ disease was easy – just destroy the thyroid and take hormone replacement pills for the rest of my life. I didn’t have a medical degree, but this treatment (RAI, radiation to kill the thyroid) just didn’t make sense. Graves’ disease is not thyroid disease. It is autoimmune dysfunction, where antibodies overstimulate a helpless thyroid.
As I studied my options, I learned that RAI could exacerbate autoimmune illness and many patients feel worse after treatment. It was surprising to find that the US was the only Western country to recommend RAI for women of childbearing age. Armed with this knowledge, I declined RAI and opted for medication. The endocrinologist mocked my decision. I was in my 20s and standing up to him was hard, but it marked a turning point and spurred me to take responsibility for my own health, rather than blindly trusting doctors. Recent reports suggest RAI treatment increases future cancer risks. My Graves’ disease eventually stabilized on medication, although I never felt really well. I pushed for answers for my continued illness, but doctors refused to test my sex or adrenal hormones.
IVF and More Damage to My Health
Things turned south again when I was unable to conceive. The supposed best fertility clinic in Washington, DC could not find a cause for my infertility. I’ll save that story for another day, but the short version involved a few years of torment and four failed IVF attempts. The fertility drugs and the stress worsened my overall health considerably.
Our last try at pregnancy was with a specialist who practiced functional medicine. Labs and charting uncovered a clear progesterone imbalance, and also explained my spotting. This simple diagnosis was completely missed by the conventional fertility clinic. A brief trial of progesterone cream resulted in two naturally conceived, healthy pregnancies. Isn’t it remarkable that several years and over $100,000 failed to produce a baby with IVF and $20 of progesterone cream on my wrist did the trick? This could be a cautionary tale about profit motive in modern medicine, but that, too, is a topic for another day.
Years of Conventional Medicine: Thyroid Damage, Autonomic Dysfunction, and Profound Fatigue
I weaned off thyroid medications and felt fairly well after my babies, but my system took a big hit when life brought an international relocation. The move was intensely stressful and my health sunk after we landed half a world away. I had no energy, gained weight, and lived in a fog. The tropical heat and humidity of Southeast Asia felt like a personalized form of torture.
Perhaps the stress of our move left me vulnerable to the reappearance of autoimmune and adrenal dysfunction, as my next diagnosis was Hashimoto’s Disease and adrenal fatigue. Doctors ordered functional medicine tests (hair, organic acids, stool, saliva cortisol and hormones) that identified nutrient imbalances, but their treatment ideas fell short. Despite replacement hormones and supplements by the handful, I remained very sick, with profound exhaustion, brain fog, sleep disruption, pain, and terribly imbalanced sex hormones.
Taking Matters Into My Own Hands
If setbacks have a bright side, it is in the drive to get better. I started studying when my doctors ran out of ideas to treat my illness. Fibromyalgia was the best description of my pain, but I knew conventional medicine offered no help for this condition. I dug into the topic and found the work of Dr. John C. Lowe, who used T3 thyroid hormone for fibromyalgia, and Paul Robinson, creator of CT3M, the circadian method for using T3. CT3M and high daily dose of progesterone cream improved my quality of life in the short term. Near daily bleeding eventually regulated back into a normal cycle and my adrenal function improved greatly.
Postural Orthostatic Tachycardia Syndrome (POTS) was the next bump, bringing a very high heart rate, very low blood pressure, heat intolerance, and extreme sweating on the lightest activity. By this time, I didn’t even ask the doctor for help. My research pointed to salt and potassium, and so I drank the adrenal cocktail and salt water daily. POTS symptoms vanished quickly with this easy strategy, as did the nocturnal polyuria that plagued me for many years.
I steadied after this time. I was not well but functional, despite some major life stressors, including another international move and a child’s health crisis. Even though I managed the daily basics, things like house guests, travel, or anything physically taxing required several days to a week of recuperation.
The Next Step: Addressing Nutrient Deficiencies
The next step in my recovery came thanks to a B12 protocol that includes co-factor nutrients, developed by Dr. Gregory Russell-Jones. Addressing the deficiencies connected to B12 helped and things progressed well until I had a disastrous reaction after eating mussels, which I hoped would raise iron levels. I vomited for hours and stayed in bed for days. I kept up the B12 protocol, but just couldn’t recover. Largely bedridden, and napping 4 hours at a stretch, I got up in the evening only to drive to a restaurant dinner, too exhausted to prepare food or deal with dishes.
Debilitating exhaustion lasted for a month, and then two, with no relief. It was an awful time, but hitting rock bottom proved a blessing in disguise, as desperation turned me back to research. Slowly, I pushed through brain fog and started to review studies on chronic fatigue and fibromyalgia. This led me to a promising Italian study using thiamine for these conditions.
Studying thiamine, it seemed plausible that the allergic reaction to mussels drained my B1 reserves, making it impossible to recover. Inspired by the research, I started on plain B1 at very high doses. To my surprise, I felt better right away. The first dose boosted my energy and mental clarity.
I continued to learn about B1’s benefits, thanks to this website and the text by Drs. Marrs and Lonsdale. Two weeks went by and thiamine HCL seemed less effective, so I switched to lipothiamine and allithiamine, the forms recommended in Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. WOW. What a difference! Virtually overnight, my gears began to turn, and I felt better with each new day. In a single month, I went from bedridden to functioning well 2 out of every 3 days. I had ideas, I had energy, and I could DO things. The setback days were mild and disappeared entirely after 2 months on thiamine.
At the 2 month mark, I had to travel for a family emergency. My pre-thiamine self would have needed at least a week of rest following this kind of trip, and I expected pain and fatigue as I stepped off the plane. But to my great surprise, I felt well! I remember walking through the airport late that evening and thinking it felt amazing to stretch my legs. Maybe that sounds like an ordinary feeling, but years of chronic fatigue and fibromyalgia conditioned my body to stop, to sit, whenever possible. It was entirely novel to FEEL GOOD while moving! The next day came and I did not collapse, I did not require days to recover and was able to carry on like a normal person. It was a remarkable change in an unbelievably short time.
Recovery From Conventional Medicine’s Ills Came Down to Thiamine
Getting better feels miraculous, but it’s not. The real credit for my recovery goes to experts like Dr. Marrs and Dr. Lonsdale who spread the word about thiamine. Despite years of illness and dead ends, I believed I could heal and I kept trying. Tenacity eventually paid off when posts on this site helped connect the dots between my symptoms and thiamine deficiency. More than anything, my recovery is a story of tremendous luck, as I finally landed upon the single nutrient my body needed most.
The difference between my “before thiamine” and “after thiamine” self is beyond what I can describe. Birth control, Cipro, and Lupron created nutrient imbalances and damaged my mitochondria, leading to multiple forms of chronic illness in the years between my 20s and 40s. Replacing thiamine made recovery possible by providing the fuel my damaged cells so badly needed. At this writing, I am 7 months into high dose thiamine and continue to improve. I have not experienced any form of setback, regardless the stressors. My energy feels close to normal, the pain is resolving, and brain fog is a thing of the past. My sense of humor, creativity and mental functioning are all on the upswing. I owe thanks to the real scientists who dare to challenge wrong-headed ideas of conventional medicine, and who provide hope for these so-called hopeless conditions. My wish is that this story will do the same for someone else.
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This article was published originally on February 6, 2020.
Thank you for sharing. I developed fibromyalgia in 2013 after a BAD reaction to a prescription. (extreme depression/anxiety) I’ve tried so many things over the years and now am trying thiamine. I wish I understood better how to approach this. I keep having anxiety attacks. (Benfo. 300 then 600 but anxiety when I go higher. Bought TTFD and had worse anxiety. B complex causes anxiety. I’ve taken 250-450 mg magnesium for many years and try to use Smartypants gummy vitamins regularly.) How can I limit the anxiety? (SAM-e?, long period of lower doses?) I really want this to work.
Can I contact you about how you helped your child with Pandas? My daughter I’m sure has a B1 deficiency, but has Pandas and can’t seem to recover.
Amy, I see a hotmail address for you, shall I write you there?
Hello, I am so very thankful to have found this article. I have read previously about the wonders of vitamin C in supposedly very high doses (up to bowel tolerance) and I have also read about vitamin B3 (niacin) being used for depression and sometimes effective for arthritis, but thiamine is new to me. I, like the author of this article, suspect now that my health was not right even as a child; in my case i think there were underlying joint problems probably stemming from a nutritional deficiency of my mother raising me by herself when we were very poor. When i grew up and went on to get married, everything was outwardly ‘ok’ until I had a few hiccups with psoriasis and then experienced a massive autoimmune flair after the birth of my first child when i was in my mid 20s. The drs only offered their drugs, the potential side effects of which horrified my husband, and as we were both planning on another baby (if possible!) so we did not accept those drugs. I had a second child naturally and fine, in fact any weird auto-immune condition I was going through appeared to go into remission when I was pregnant. This i find a complete and utter mystery and i am always on the lookout for information that may suggest why i felt better being pregnant than i did afterwards, post-partum, because it was so odd. Anyway, by the time baby 2 came, i was eating ‘clean’, trying supplements, herbalists, nutritionalists (i was not breast feeding very long due to exhaustion), but all were limited in what they could tell me. Also, it cost so much money or the advice required such a strict diet at times, that it was not realistic OR sustainable! My diet was/is very good compared to the average UK standards, but i was still extremely low in energy, could not shift the baby weight, physically weak, low, puffy and in pain with a new mystery stiffness condition that the nhs just called “chronic inflammation”, along with an unexplainable enlarged spleen. I totally gave up on seeking average, allopathic methods of help.. This article has been encouraging to me because my gut feeling was always that there IS a cure, that whatever i have is not incurable, our bodies want to heal us, but even if that cure is growing in the back garden, if we don’t know about it (or if we don’t know the correct dose!) then it may as well not be there! I am in my 30s now, and like the author i feel like i have pretty much lost a decade of my life to unexplained swellings, fatigue and inability to just move around/ think like i could pre-pregnancy. I have not even been able to push either or my children in a pram, because while i have slowly improved somewhat, when they were very young I could barely walk! Most people just look at me pitifully if i express my desire to be well and say something like ‘you cannot expect to be as you were 10 years ago’ as if i am stupid or trying to reverse time, but as i don’t have multicoloured polka dots all over my skin they seem to think I outwardly look OK and therefore most of it is all in my head! Thankfully, having a supportive husband helps, and I have learnt how to eat well and avoid junk for my children’s sake in the process, but I would love to hear more of other people’s experiences with orthomolecular medicine, vitamins etc. I will definitely be trying higher dosage of thiamine now. I currently take 200mg per day, in divided doses, but maybe this is not enough to have any real effect? I also take the recommendation for D3 AND K2, especially after hearing how vital k2 is for joints and the proper use of calcium. If anyone has any recommendations or good things to try, please share! I will not give up. Best wishes to all!
The advice that I try to provide in these posts is based on hard-won experience seeing patients. I gradually came to the conclusion that the present medical model is completely wrong and needs renewing. The present method of treating disease is by the use of a foreign chemical that either stimulates the cell or suppresses its function. The fundamental need that enables us to thrive in a hostile environment is the proper production of energy and its consumption and that can only be accomplished through nutrients. Our food consists of calorie bearing foods and a whole series of micronutrients that enable calories to be turned into ATP, the energy currency of the body. I found that a diagnosis, as employed in orthodox medicine, was not really necessary. All I had to do was to give intravenous nutrients that always included thiamine. There are, of course, genetically determined diseases but it has also been found that genes can be altered by nutrition and lifestyle, a science known as epigenetics. The large doses of thiamine that are constantly being advised in these posts means that we are using thiamine as a drug. It assumes that the mechanism has been disused for a long enough that the machinery has deteriorated as a direct result of the absence of thiamine. By using it as a drug, we believe that we are restoring function in the enzymatic machinery.
The despair voiced in this group of posts is typical of the illnesses that are so common in America and I want to indicate the commonest cause. I draw your attention to a book written in 1973 by John Yudkin, a professor in a major English University. The ominous title is “Sweet and Dangerous”. His detailed research had shown that sugar (yes, sugar) was the cause of many diseases. What he did not discuss is that Sir Rudolph Peters, a famous Cambridge scientist, had discovered that there was no difference in the function of thiamine deficient brain cells compared with thiamine sufficient cells UNTIL GLUCOSE (brain fuel) WAS ADDED TO THE EXPERIMENT. The thiamine sufficient cells immediately began to burn the glucose,(shown by production of carbon dioxide) whereas the thiamine deficient cells did nothing ! Peters called this difference “the Catatorulin effect” and it was the beginning of the detailed research that has clearly demonstrated the essential need of thiamine in the production of energy. Without energy, nothing happens in the brain/body dialogue that enables us to function. That means that a relatively mild to moderate thiamine deficiency can produce the exact similarity of ANY disease. Therefore, beriberi is the great imitator of any disease in its early stages. Beriberi patients are often diagnosed in America as psychosomatic because the medical profession completely denies that ANY vitamin deficiency disease ever occurs.
Thank you for sharing your story. You are brave and offer hope to others who feel similarly.
Will you please activate your links? I would LOVE to read the Italian study and the article you referenced! I think it may help my parents a lot, and maybe help me too.
The links have been restored.
Is there any documentation on common sides from thiamine?
Heart palpitations or gastric?
I want to make a comment. Modern medicine uses drugs which can only stimulate or suppress normal cellular function. Thiamine is a catalyst that is essential to the synthesis of energy from food. That is its sole responsibility and you have to think quite differently. The energy is stored in a chemical substance known as adenosine triphosphate (ATP). The nearest analogy is a battery. But the energy has to be used for body/brain function and this is done by a series of chemical reactions. So, energy production can be compared with an engine in a car but it’s consumption can be compared with transmission in a car. Therefore, energy deficiency or excessive energy consumption are the Yin and Yang about a mean. So you have to think differently about what you are doing and finding success.
Thank you for your input, Dr. Lonsdale. It seems to me that thiamine allowed my mitochondria to resume proper function, and once the thiamine was on board, my other systems responded in kind – improvement in every other area. Is that the right way to think of it? What is your guess for why someone like me improves after only a high daily dose? In the future, is it realistic to reduce thiamine dose? Any way to understand why I should need so much – related to damage, genetics, or… ?
Please try to understand the use of high dose thiamine. The best diet in America is mildly deficient in micronutrients and you might go for years without ever knowing that your “allergies” (for example) reflect this. Well, along comes an infectious illness and your defense mechanisms go into action. These complex and entirely automatic actions require energy and you are “weighed in the balance and found wanting”, i.e energy deficiency. You have now precipitated an energy deficiency that produces symptoms and you go to your physician who tells you that you have “psychosomatic” disease. He does not recognize the symptoms as nutrient deficiency and his conventional lab tests are all normal. You go to another physician with the same result. You then start seeing a series of specialists with the same results. This goes on for years and the chemical machinery, particularly the enzymatic machinery that depends on thiamine and magnesium, begins to deteriorate and lose function. If now you are fortunate enough to find the answer, you start to take thiamine and magnesium in ever increasing doses (after paradox is complete). You are now using thiamine and magnesium as “drugs” that are being used in these big doses to stimulate the dying function of the thiamine/ magnesium dependent enzymes (that make energy) back to normal function. Bear in mind that this may not always work since permanent damage may have accrued. In my view, it is the medical delinquency and refusal to find the reality of disease that is responsible for widespread disease. We think that the well described vitamin deficiency diseases will not occur but as a physician, I have seen them all. Beriberi, the classic thiamine deficient disease, has a long morbidity and a low mortality so it can affect a person for years. I call them “the walking sick” because they continue to work and live their lives! I made a careful study of the history of solving the cause of a disease that had affected humanity for thousands of years. When thiamine deficiency turned out to be the cause it took months of high doses to restore health. My deductions and consequent advice was predicated on that careful study.
I am at the end of my rope, praying for death. Fatigue and pain so debilitating if I were an animal, you would humanely put me down. As a Christian, I can do nothing to get myself out of this hell, so I await a slow painful death. Endocrinologist no help. Internal medicine, UROGYNOCOLIGIST worse. Putting my hope into Integrative Dr, But so far supplements seem to be limitless. Will try B 1 . Where to buy best kind and is it expensive? Reserves depleted by quest for answers. Hypothyroid even on NP Thyroid, intermittent fasting just to fight morbid obesity. Diet restricted, no dairy, sugar, eggs, goitragens, gluten or processed meats. I hate life and my own body.
Sounds like my story. I am taking a B vitamin and B5. When you say high doses, what’s that mean? How high?
Hannah, most days about 600mg, 150 mg / 4 * daily. When I try to cut back, fatigue returns.
hey did you ever have trouble falling asleep at night before thiamine or during thiamine ? do you sleep well now ?
Johan, I do sometimes struggle with sleep. I don’t think thiamine has made a difference in that area.
When I take 5 HTP, I dream for one night like before Ciproxin. In the following nights I m sleepless again.
Probably other nutrients are depleted after one night of dreams.
I made some research about Melatonin.
Dr. Russell Reiter seems to be the leading researcher.
Best regards and thank you for sharing your story.
Nancy, you are not alone in your despair. I’ve been there, too. In fact, less than a year ago, I also felt like a candidate for humane euthanasia. We are all different so I cannot promise you will benefit so much from thiamine but please try! Testing is not reliable for this deficiency and sadly, a regular doctor will not connect your symptoms to nutrient deficiencies. But my story is proof that you can heal without a doctor! Read read read on this site and Dr. Marrs’ book. You will find other success stories, along with the science behind thiamine and the symptoms of deficiency. I’ve taken so many supplements over the years. Very few helped but now that thiamine has proved a cure, I am finally weaning off others. Don’t give up. You have my best wishes.
Nancy, you are not alone in your despair. I’ve been there, too. In fact, less than a year ago, I also felt like a candidate for humane euthanasia. We are all different so I cannot promise you will benefit so much from thiamine but please try! Testing is not reliable for this deficiency and sadly, a regular doctor will not connect your symptoms to nutrient deficiencies. But my story is proof that you can heal without a doctor! Read read read on this site and Dr. Marrs’ book. You will find other success stories, along with the science behind thiamine and the symptoms of deficiency. I’ve taken so many supplements over the years. Very few helped but now that thiamine has proved a cure, I am finally weaning off others. Don’t give up. You have my best wishes.
Nancy, I take Allithiamine, Ecological Formulas is the brand. Good luck.
Nancy- one small step you may want to try is switching your thyroid medicine. Over at Adrenal Fatigue and Thyroid Care Facebook Group there are literally hundreds of members reporting that NP thyroid no longer works for them. The company reformulated the supplement around May of 2019 (my pharmacy still had the old “good” stuff for a few months)- and after the reformulation, many found they were returning to a hypothyroid state. You may want to consider switching to a combination of synthetic T4 and T3 medications. One grain of NP thyroid is 60mcg. And of that 60mcg, 38 is T4 hormone and 9 is T3 hormone. I used to take 1 3/4 grains NP, which is about 70mcg T4 and 15 mcg T3. That was a bit too much T4 and not quite enough T3. Because of the reformulation scare , I switched to 62.5 mcg T4 and 20 mcg T3, both synthetic, and am doing pretty well. Praying for you tonight Nancy. Carpal tunnel and plantar fasciitis pain go away for me when I’m on a good thyroid hormone dose. And my chronically weak back seems to get hurt less often