fibromyalgia Archives - Hormones Matter

Thiamine, Fibromyalgia, and Chronic Pain

Published on January 16, 2024

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Fibromyalgia (FMS) is a complex chronic condition characterized by allodynia, pain, stiffness, paresthesias, and tenderness of the muscles, skin, and soft tissues. It also may feature HPA-axis dysregulation, circadian abnormalities, fatigue and muscle weakness, depression, and insomnia. Biochemical abnormalities include elevated markers of system oxidative stress, inflammation, and mitochondrial dysfunction. Many in the FMS community have achieved great successes using high doses of thiamine.

Covering all the underlying drivers of this condition is way beyond the scope of this article, because there are many. Instead, I will focus on the key neurological and metabolic abnormalities to explain the potential mechanisms by which thiamine can be useful.

To understand how thiamine supplementation might help to resolve chronic pain, we must first cover the basics of pain signaling and examine which processes become dysfunctional in FMS. On the one hand, there are researchers who hypothesize that FMS originates in the central nervous system and is produced by changes in the way that the brain processes sensory information. Alternatively, other research highlights peripheral changes in the structure and metabolic function of tissues which likely also contribute to the sensation of chronic pain. In short, it appears that the causes of this condition are multifactorial and systemic.

Central Pain Processing

The medical term for sensing pain is nociception, and this can be divided into two opposing “branches” or pathways which either exert a facilitatory or inhibitory effect on pain sensing – pro-nociception and anti-nociception.

Without going into significant detail, pain sensing begins with sensory information detected by neurons in the peripheral tissues, which is then carried to the dorsal horn of the spinal cord. At the neuronal synapse, excitatory neurotransmitters such as glutamate are released and activate NMDA receptors to propagate a signal through the spinothalamic tract to a brain region called the thalamus. The stimulatory effects of these excitatory neurotransmitters can be amplified by another neurochemical named “substance P”, which in turn is also increased by Nerve Growth Factor. From the thalamus, the information is processed in other locations of the brain including the somatosensory cortex. Together, these processes constitute pro-nociception or “pro-pain” signaling.

On the other hand, signals from other brain areas descending through the brainstem reach the dorsal horn and act to oppose, inhibit, or modulate the magnitude of the pronociceptive signal. Hence, this is referred to as anti-nociception and serves an essential counterbalance function to prevent excessive or unopposed pain. The inhibitory action of anti-nociception is mediated through the biogenic amines norepinephrine (noradrenaline), serotonin and dopamine, along with other neurochemicals including the endogenous opioids.

An easy way to conceptualize this system is as though there were an “on” and “off” switch for pain. A well-working system is balanced between pro- and anti-nociception so that pain is perceived in the way that is appropriate to the context – neither too excessive nor too weak. If the pathways involved in pro-nociception were to overwhelm the counterbalancing effects of anti-nociception, or alternative if the neurochemical mediators involved in anti-nociception were too weak, the result would be chronic allodynia (the sensation of pain which is disproportionate to the stimulus). In other words, someone would feel chronic and excessive bodily pain for no apparent reason.

Pain and sleep in fibromyalgia — Choy, E. The role of sleep in pain and fibromyalgia. Nat Rev Rheumatol11, 513–520 (2015). https://doi.org/10.1038/nrrheum.2015.56.

‍Unsurprisingly, research indicates that patients with FMS exhibit both of the above defects in central pain processing. Chemical mediators involved in pro-nociception have been shown to be abnormal in FMS. In the cerebrospinal fluid, pain enhancing chemicals substance P and nerve growth factor were both elevated. Brain insula levels of the excitatory neurotransmitter glutamate were also higher during pain. More recent data has identified elevated concentrations of glutamate in several areas of the brain, which is positively correlated with pain scores. Furthermore, increased glutamate levels in the posterior gyrus positively correlated with depression, pain, and global function in another study. Increased sensitivity of spinal neurons occurs in FMS, rendering them more susceptible to excessive stimulation of NMDA receptors by increased levels of glutamate. The resulting neuroexcitoxicity may be responsible for chronic hyperalgesia.

On the other hand, metabolites of other neurochemicals (the biogenic amines) involved in the inhibitory pathways were found to be lower in cerebrospinal fluid of patients with FMS. Furthermore, fMRI studies have demonstrated abnormal functional connectivity of the periaqueductal grey, a region of the brain involved in pain processing. Together, these findings support the notion that the portion of the central system involved in modulating pain may become dysfunctional – where pro-nociception (the “on-switch”) could be enhanced and anti-nociception (the “off-switch”) may be inhibited.

Mechanisms in the Hyper-excitable Brain

More recently, microglial activation was demonstrated in multiple brain regions involved in pain processing including the dorsolateral prefrontal cortex, dorsomedial PFC, primary somatosensory and motor cortices, precuneus, and posterior cingulate cortex. These findings are also suggestive of immune system activation and chronic neuroinflammation.

Another region of the central nervous system involved in pain processing is the dorsal root ganglia. This tissue is comprised of nodules positioned along the spinal column which key roles in pain signaling from the peripheral to the central nervous system. The ganglia are essentially made up of bundles of sensory nerve fibers which are tasked with conveying information to the higher centers in the brain.

Ordinarily dorsal root ganglia have minimal sympathetic innervation, although under the circumstances of acute trauma or infection (or under the influence of elevate nerve growth factor), sympathetic neurons in this region undergo a form of neuroplasticity called “sprouting”.

Sprouting increases the network of interconnections between sympathetic neurons and features a “hyper-excitability” of the sodium channels, where catecholamines and other sympathetic mediators induce sensory neuron firing. These mechanisms make up the basis for the concept of “sympathetic-driven-pain”, where activation of the sympathetic nervous system increases the sensation of systemic pain.

What this means is that the ordinary neurochemicals needed within the sympathetic nervous system can go on to stimulate hyper-excitable sensory cells in the DRG, and this produces the sensation of pain. It also means that inhibiting the hyper-excitability of these neurons is likely capable of reducing the perception of pain. DRG hyperexcitability is considered by some researchers to be one of the primary drivers behind the pain and dysautonomia in FMS. A genetic polymorphism (SCN9A) in the gene which encodes dorsal root ganglia sodium channels which is thought to contribute to hyperexcitability has been associated with severe FMS. Alterations in sodium channels and hyperexcitability of sensory neurons in the DRG likely plays a key role in the pathogenesis of a condition small fiber neuropathy.

This condition leads to degeneration of unmyelinated C and A-delta sensory neuron fibers and produces symptoms which are remarkably similar to those of FMS. It constitutes one of the main forms of diabetic neuropathy but can also be caused many other factors including autoimmunity and infection.

In fact, several lines of research have identified evidence of small-fiber neuropathy in FMS. Up to 30% of patients were shown to have abnormal epidermal nerve fiber density in the calf and skin. Two studies showed evidence of neuropathy using corneal assessment (here and here), and SF-neuropathy was also confirmed in 6 of 20 patients by another group of researchers. Patients with FMS were also found to have hyper-excitability of nociceptors on sensory neurons which closely resembles small fiber neuropathy. These findings have led some authors to hypothesize that idiopathic FMS may actually be undiagnosed small fiber neuropathy in a significant percentage of cases.

Aside from the factors discussed above, numerous research studies have identified a variety of other structural and functional abnormalities in the peripheral muscles and tissues of patients with FMS.

Mitochondria and Metabolism in Fibromyalgia

Research into FMS has demonstrated mitochondrial dysfunction in muscle tissue, skin and white blood cells. Muscle biopsies have identified mitochondrial changes such as irregular cristae, defects of cytochrome-c-oxidase, and deletions of mitochondrial DNA. There is also a decrease in enzymes involved in energy metabolism including citrate synthase, 3-hydroxyCoA dehydrogenase, and cytochrome oxidase. Evidence of this has also been found in skin biopsies.

In a brilliant paper titled “Metabolic Connection of Inflammatory Pain: Pivotal Role of a Pyruvate Dehydrogenase Kinase-Pyruvate Dehydrogenase-Lactic Acid Axis”, the authors emphasize the central role of cell metabolism in preventing or promoting chronic inflammatory pain. One consequence of defective oxidative respiration in cells is a “metabolic shift” away from using oxygen and toward anaerobic metabolism.

The mitochondrial enzyme responsible for transforming pyruvate (pyruvate dehydrogenase) becomes inhibited, and pyruvate is instead shunted down an alternative pathway to yield lactate as a “back-up route” to maintain energy flow. This not only reduces cellular ATP by a great amount, but the resulting tissues acidity may contribute to pain hypersensitivity through sensitizing peripheral pain receptors. It has been proposed that mitochondrial dysfunction may actually be a prerequisite for the development of pain in FMS. This was reflected in one study which found much greater interstitial and plasma concentrations of lactate in patients with chronic widespread pain/FMS. Importantly, the concentration of lactate correlated with pain thresholds and pain intensity – demonstrating a link between disturbed oxidative energy metabolism and chronic pain. Dysfunctional mitochondria are known to spew out excessive reactive oxygen species as a consequence of inefficient or “dirty” oxidative respiration. These ROS can go on damage important cell components and yield free radical species which, if left unchecked, produce a state of oxidative stress. The endogenous antioxidant enzymes and other antioxidant nutrients are responsible for combating the burden, but are limited in this capacity when the burden is becomes too heavy.

Carrasco C, Naziroǧlu M, Rodríguez AB, Pariente JA. Neuropathic Pain: Delving into the Oxidative Origin and the Possible Implication of Transient Receptor Potential Channels. Front Physiol. 2018;9:95. Published 2018 Feb 14. doi:10.3389/fphys.2018.00095.

‍Excessive reactive oxygen species are likely involved in chronic pain via several mechanisms. Elevated spinal ROS was shown to induce central sensitization and pain without peripheral nerve injury. Superoxide is also capable of altering nociception to increase pain, and increased tissue levels of ROS have been demonstrated in animal models of chronic pain disorders. This is supported by research showing anti-nociceptive/analgesic effects of superoxide scavenging antioxidant formulations.

In line with this reasoning, the research indicates that oxidative stress is indeed a common finding in FMS. Antioxidant enzymes glutathione reductase, glutathione peroxidase, and catalase were shown to be significantly lower in FMS; along with higher markers of oxidative stress such as lipid peroxides and protein carbonyls. In that study, oxidative markers were correlated with symptom severity. Another group of researchers demonstrated similar results, also finding elevated markers of DNA damage when compared with controls. The skin of FMS patients was depleted in coenzyme Q10 and contained higher levels of malondialdehyde and expression of 8-oxoguanine glycolase, indicating oxidative DNA damage. A further study found increased protein peroxidation, a reduction in antioxidant thiol compounds, and depleted levels of nitric oxide.

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Jha MK, Song GJ, Lee MG, et al. Metabolic Connection of Inflammatory Pain: Pivotal Role of a Pyruvate Dehydrogenase Kinase-Pyruvate Dehydrogenase-Lactic Acid Axis. J Neurosci. 2015;35(42):14353-14369. doi:10.1523/JNEUROSCI.1910-15.2015.

Increased tissue concentrations of lactate stemming from localized mitochondrial dysfunction also promote a local inflammatory environment through triggering the release of cytokines IL-1B and TNF-a, along with increasing NF-KB-dependent inflammatory gene expression. Indeed, markers of systemic inflammation have been identified in FMS such as increased salivary and serum TNF-a, along with skin biopsies. Notably, TNF-a levels were positively correlated with pain scale scores, and negatively correlated with mitochondrial-DNA. Additionally, neurogenic inflammation (initiated by the nerve cells) is also associated with FMS. To summarize some of the key findings, FMS features:

Defective central pain processing characterized by enhanced pro-nociception and reduced antinociceptive mediators
Glutamate excitotoxicity in the central nervous system
Neuroinflammation initiated by microglial cells
A subset of patients display signs of small fiber neuropathy likely involving hyperexcitability of neurons in the dorsal root ganglia
Mitochondrial dysfunction in skin, muscle and white blood cells
Structural mitochondrial abnormalities
Elevated tissue concentrations of lactate and pyruvate
Elevated systemic inflammatory markers
Elevated markers of oxidative stress with depleted endogenous antioxidant systems

So now that we have rough idea of how the system malfunctions in FMS, we can begin digging deeper into the ways in which thiamine can help to address the abnormalities listed above.

Fibromyalgia and Thiamine Processing

There are several biochemical findings in FMS which are similar to those seen in thiamine deficiency, and a few lines of research indicate that there may be a problem with thiamine processing or utilization at the cellular level. Firstly, elevated whole blood pyruvate levels have been found in FMS, along with a greatly increased pyruvate/lactate ratio similar to that reported previously in thiamine deficiency. This same study also found reduced serum levels of the active form of thiamine – thiamine pyrophosphate (TPP). Secondly, Two thiamine-dependent enzymes (white cell pyruvate dehydrogenase and erythrocyte transketolase) had a much lower affinity for their coenzyme (TPP) in FMS patients. A lower affinity for the coenzyme means that higher levels of TPP are required to achieve normal enzyme activity. This is suggestive of a functional defect in thiamine utilization. Thirdly, another study showed a significantly elevated TPP-effect for transketolase activity, which is an indication of functional intracellular thiamine deficiency. The author also references two previous studies where they found much greater results using active TPP injections (20 out of 21 patients) when compared with thiamine alone (5 out of 13 patients). Unfortunately, those studies were published in French and I cannot locate them online. Finally, a more recent paper looked at various markers related to thiamine in FMS, alcoholism, and myofascial pain syndrome. Consistent with the findings laid out above, researchers found elevated pyruvate, an increased pyruvate/lactate ratio, and decreased affinity of transketolase for its coenzyme. Once again, the authors concluded that the changes seen in FMS demonstrate a functional problem with thiamine processing inside cells.

Can Thiamine Be Used To Treat Fibromyalgia?

As we have seen above, FMS is characterized by a wide variety of physiological changes both within the central nervous system and in the peripheral tissues. Abnormal central pain processing mechanisms have been identified, dorsal root ganglia neuronal hyperexcitability along with peripheral cell mitochondrial dysfunction, oxidative stress, inflammation, neuropathy and neurogenic inflammation. Biochemical findings indicate functional problems with thiamine metabolism, including lower levels of active thiamine, possible structural enzyme defects and reduced affinity for coenzymes, along with signs of functional deficiencies.

Many in the fibromyalgia community are likely familiar with the one study which used ultra-high doses of thiamine HCL to treat this condition. It was conducted by Dr. Constantini and coworkers at their lab based in Italy. Although this study only included a small sample size of three patients, it provided fascinating results which certainly merit further investigation.

The patients were administered daily doses of thiamine HCL ranged between 600mg-1800mg orally. After 20 days, they saw a 37%-71% reduction in fatigue and 50-80% reduction in pain. Two patients witnessed little to no benefit at lower doses, whereas they saw an abrupt improvement upon reaching the 1500-1800mg mark. This led the authors to theorize that the high doses might be necessary to bypass any potential intracellular transport defects or enzymatic abnormalities.

This study was the first of its kind that I know of to use mega-doses specifically for FMS. I have personally witnessed many people with this condition improve greatly with high dose thiamine. It is unfortunate that no other studies have been done to elucidate the mechanisms of action. These results certainly leave one wondering, how did thiamine provide such good results for these patients? Based on the established data of the pathophysiology of FMS and the mechanisms outlined above, the next section will attempt to explain why and how thiamine can improve the pain, fatigue, and other debilitating symptoms of this condition.

Thiamine For Fibromyalgia: The Mechanisms

A wide body of evidence has demonstrated anti-nociceptive and analgesic properties of thiamine when used in ultra high doses. In short, thiamine can work on both central and peripheral systems to reduce neuronal excitoxicity and hyperexcitability, inhibit glial cell activation and reduce inflammation, kickstart oxidative phosphorylation and improve mitochondrial function, and stimulate endogenous antioxidant systems. It has long been known that a lack of thiamine can produce severe disruptions in neurological function and inflict damage to several areas of the central nervous system. Of note, many of the structural and functional changes witnessed in thiamine deficiency closely resemble those in FMS.

Reduction of glutamate excitoxicity. Glutamate excitotoxicity is one phenomenon found in both FMS and thiamine deficiency. Evidence shows that thiamine deficiency increases extracellular glutamate concentrations to induce neurotoxic lesions in the brain. A deficiency also reduces glutamate uptake in neurons, which ordinarily helps to reduce extracellular glutamate concentrations, and this occurs likely through downregulation of GLT-1 and GLAST glutamate transporters. Through enhancing the activity of alpha-ketoglutarate dehydrogenase, a thiamine-dependent enzyme partially responsible for clearing excess glutamate, high-dose thiamine in animals has been shown to reduce glutamate concentrations and reduce oxidative stress.

Analgesic effects. Extremely high doses (250mg/kg) were shown to produce remarkable analgesic effects in a dose-dependent fashion in mice. The authors attributed these results to “an increased afferent inhibitory control of the spinal cord along with decreased response of thalamic neurons to nociceptive stimulation.” Several studies using electrophysiological equipment have shown that administration of B vitamins (thiamine , B6 and B12) can inhibit nociceptive neurons in the spinal dorsal horn and thalamus.

Tames hyperexcitable neurons. Recall that hyperexcitability of neurons in the dorsal root ganglia is also thought to FMS be one of the driving mechanisms behind sympathetic-mediated chronic pain in FMS. In vitro, thiamine administration reduces nerve hyperexcitability DRG neurons. High doses suppressed thermal hyperalgesia in animals and reduced hyperexcitability of DRG neurons by preventing alterations in sodium currents. These results suggest that high-dose thiamine may be acting to stabilize DRG neurons to reduce chronic pain. Furthermore, a combination of thiamine, riboflavin, and nicotinamide in very high doses prevented toxicity-induced nociception through reducing inflammatory cytokine (TNF-a & CXCL-1) production in dorsal root ganglia neurons and the thalamus.

Dampens neuroinflammation. Thiamine also appears to dampen neuroinflammatory responses in brain cells, which may help to explain its calming and analgesic effects in people with ongoing inflammatory issues. Two in vitro studies in (here and here ) demonstrated the ability of benfotiamine (a lipid-soluble thiamine derivative) to decrease pro-inflammatory cytokines, boost antioxidant responses to protect cell viability, and inactivate microglial cells in a model of neuroinflammation. High-dose thiamine has been shown to exert anti-inflammatory effects in numerous studies (here and here). The above findings showing thiamine’s protective role in the brain highlight the importance of using a form/derivative of this nutrient which can penetrate the blood brain barrier and saturate the central nervous system. Unlike benfotiamine, thiamine tetrahydrofurfuryl disulfide (TTFD) has the capacity to enter brain and increase brain thiamine content. When administered in high doses, thiamine and related derivatives have demonstrated significant anti-nociceptive effects in animal models of neuropathic and inflammatory pain (here, here and here). Human studies have also shown impressive analgesic effects, including patients with diabetic neuropathic pain (here and here).

Reduces neuropathy. Another way that thiamine may potentially help in cases of FMS relates to the type of neuropathy which has been identified in a large portion of these patients. If the allodynia and hyperalgesia is of neuropathic origin, then it makes perfect sense why thiamine can provide relief. Small fiber neuropathy commonly coexists with diabetes and is one of the primary forms of diabetic neuropathy. Both the central and peripheral nerves require large amounts of thiamine to maintain functionality, and one of the first signs of deficiency can relate to peripheral nerve complaints. Thiamine has long been studied for its role in neurological function, and thiamine derivatives have been shown on numerous occasions to improve diabetic neuropathy through reducing oxidative stress, improving redox status and nerve cell regeneration (here, here and here).

Corrects glutathione and reduces oxidative stress. Low affinity of transketolase for its coenzyme in FMS might help to explain to deficit in reduced glutathione and overall picture of oxidative stress. Transketolase is an enzyme which requires thiamine and magnesium, and is involved in the regeneration of glutathione through the pentose phosphate pathway. Low transketolase activity can be caused by genuine or functional thiamine deficiency, and high-dose thiamine can restore transketolase function. Furthermore, thiamine supplementation has been shown to protect cells from oxidative onslaught and improve reduced glutathione levels likely through its role as a transketolase cofactor.

Supports energy synthesis. In central and peripheral cells, mitochondrial dysfunction can be improved through the addition of nutrients which are required as cofactors in energy metabolism. As a cofactor and allosteric regulator of several enzymes, active thiamine possesses a great capacity to support mitochondrial energy synthesis.

Normalizes lactate. The buildup of muscle tissue lactate found in FMS and the elevated pyruvate can be attributed to a “metabolic block” or inactivation of the pyruvate dehydrogenase enzyme complex. Because thiamine is a key cofactor, inhibition or downregulation of this enzyme is one of the common findings in thiamine deficiency. High-dose thiamine has been used successfully in multiple studies to “kickstart” or increase the activity of this enzyme by a significant amount to normalize lactate and pyruvate concentrations and restore the cell’s ability to use oxygen. Tissue pH returns back to normal and metabolism is shifted back towards oxidative phosphorylation and away from glycolysis. Outside of the context of deficiency, this phenomenon is presumed to occur through inhibition of another enzyme called pyruvate dehydrogenase kinase – which essentially removes the “block” from the PDH complex. For this reason, high-dose thiamine possesses remarkable anti-tumor/anti-cancer properties also.

With the above in mind, is it any wonder why thiamine has been able to provide such benefits for people with FMS? Looking at the literature published on chronic pain, it seems that the powerful analgesic properties of thiamine have been utilized for a variety of disorders involving pain.

Thiamine Reduces Pain

One group of researchers investigated the analgesic effect thiamine in an animal model of pain induced by second-degree burns. They showed that local administration of 2-4mg was found to attenuate the pain caused by this injury. In another animal model of CFA-induced arthritis, high doses attenuate thermal hyperalgesia (pain), reduced TNF-a and IL-1B, and reduced paw edema which was an indicator of the inflammatory response. In children with chronic acrodynia (pain in the hands) and high pyruvate (similar to FMS), thiamine supplementation was shown to swiftly resolve symptoms. In combination with vitamin B6 and B12, thiamine has been used in cases of neuritis, PMS and painful vertebral syndrome.

If we reference back to much older research, the results are quite astonishing. It appears that the pain-relieving effects of thiamine have long been known – yet seemingly forgotten in the field of medical research. A paper published in the 1930s describes the efficacy of thiamine for the treatment of pain in amputation stomps. A daily injection of 10mg thiamine provided considerable pain relief in 26 of 30 cases. In 1940, researchers administered thiamine to patients presenting with painful varicose ulcers in the lower extremities. Of the 35 patients, 30 experienced relief from pain. Pain, heaviness, stiffness and pressure were relieved within 4-8 days after treatment, and when treatment was discontinued the symptoms returned in a milder form. The author also references another small trial in which 9 out of 10 patients experienced significant pain relief, and 8 experienced a complete resolution in symptoms. In that trial, the onset of symptom relief varied from 3 to 11 days. Another paper from 1941 demonstrated pain relieving benefits of thiamine in the field of dentistry. Intramuscular injections at the time of dental extraction were shown to prevent dry sockets, and those who developed dry sockets experienced pain relief when compared with controls. One more case describes a case of persistent bilateral shoulder joint pains cured with thiamine treatment.

Intraspinal injections were investigated in the late 1930s for relief from intractable pain and inflammatory/degenerative nervous system diseases. A total of 28 patients with various nervous system/pain disorder received treatment of between 10-100mg thiamine. According to the author:

After intraspinal injection of vitamin B1, improvement in varying degrees was noted in all cases. All felt better and looked better; appetites were increased, pain was lessened or abolished completely, muscular control improved, speech and gait improved, joints became looser, libido was increased, diplopia corrected. Some of the patients felt rejuvenated.

Interestingly, the author described a reaction similar to the “paradoxical reaction”, where some patients experienced a temporary worsening of symptoms including a slight elevation of temperature, weakness, stiffness of muscles and fingers, loss of appetite, buzzing or blowing in ears, and conjunctivitis lasting from several hours to several days. This was often followed by signs of improvement.

Much to my surprise, thiamine was apparently used as an analgesic and labor-inducer during childbirth in the Soviet Union and also in the West. A review published in 1951 found that a dose between 40-300mg produced some relief from pain in 50% of 622 patients. In 237 of these patients, 90% experienced shorter duration of labor. The authors also described their own research, where 35% experienced pain relief.

Relatively speaking, the therapeutic potential of this nutrient is practically unknown. I have personally witnessed immense improvements in several clients with FMS using this nutrient in high doses in conjunction with the necessary nutrient cofactors. I hope that you can now appreciate the potential benefits of thiamine for improving the symptoms of fibromyalgia and have a better understanding of the potential mechanisms behind how this nutrient works.

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This article was published originally on Objective Nutrients on June 17, 2020 and republished here with permission on January 2021.

Image by Josh Clifford from Pixabay.

From Mother to Daughter: The Legacy of Undiagnosed Vitamin Deficiencies

by B. Figueroa

Published on July 10, 2023

14129 views

This is a story of a mother with undiagnosed vitamin B deficiencies who gave birth to a daughter who was also born with undiagnosed vitamin B deficiencies. In the eyes of conventional doctors and labs, there was not much wrong with us, but we knew that life was harder than it should be. We lived managing debilitating dizziness, daily migraines, fibromyalgia pain, chronic fatigue, allergies, hormonal changes, anxiety, and depression. Until we discovered that we were both hypermobile with histamine issues, hypoglycemic, and had many vitamin B deficiencies. The biggest challenge was for my daughter to start taking thiamine (vitamin B1). Her heart rate was all over the place and she had such a bad paradoxical reaction to thiamine that we believe she had been living with undiagnosed beriberi along with POTS.

Mom’s Health Marked by Asthma, Anxiety, Migraines, and a Difficult Pregnancy

All I remember as a child is being afraid to talk in school even if I knew the answer to a question. I had allergies and could not exercise due to asthma. During college, I had to read over and over the same thing because I could not concentrate. I worked extremely hard because the fear of failure was too much to bear. I started to have hormonal imbalances and missing periods. I successfully finished college and moved away to another state. That is when migraines started. Later, I became pregnant with my first child and started having blood clots. Anxiety and depression would come and go with hormonal changes.

When I was pregnant with my second child, my daughter, I was sick every morning with nausea. After 6 months of pregnancy, I had gained only 6 pounds. Ultrasounds showed that the baby was growing normally, but I was losing weight. At that point, I also could see blood clots on my leg. I was placed on bed rest. By the 8^th month, my water broke and my daughter was born. She was jaundiced and placed under UV light for a week. I also stayed in the hospital for a week dehydrated, with blood clots, and with the “baby blues”. We left the hospital after a week, and she had a “normal” development. However, you could see that she was a baby that would not go with anyone, not even the people close to us, indicating some anxiety.

Daughter’s Early Health Issues: Selective Mutism, Asthma, Concentration Issues

When my daughter turned four years old, we moved out of state and that is when she stopped talking outside the house. I later found out that it is called selective mutism, a form of severe social anxiety. She started seeing a school counselor to try to help with her anxiety and self-esteem issues. I brought a girl scout group to my house so that she could start having friends and talk to others in her area of comfort. She also developed asthma and needed nebulizer/albuterol treatments frequently and daily QVAR for prevention. She was given Singulair, but it made her very depressed. Her grades in all classes were all over, from A to D. She would spend the whole time after school trying to complete homework, but she couldn’t. Her teacher told me that she really did not have that much homework. I would ask her to watch the dog eating and to take her outside as soon as the dog finished but she would be wandering around the kitchen and could not pay attention to the dog. Her neurologist gave her Strattera and that helped a little. Her EGG also showed some abnormal activity. The doctor recommended anti-seizure medicine and said that she was probably having mal-petit seizures. I refused medication based on how she reacted to Singulair and because the doctors were using words like “probably” and “just in case”. I kept an eye on her and noticed when she ate ice cream and got asthma. I had her stop sugars and dairy. Soon after that, a teacher called me, excited to tell me that my daughter was talking at school. She also was able to stop all asthma medication except for 2 weeks every year when seasonal allergies would hit. At this point, it had been already four years since she stopped talking outside our house. She started excelling in all classes and we were able to stop Strattera. However, the continuous anxiety remained.

The Teenage Years: Continuous Migraine, More Medications, and No Answers

At 16 years old, she got a cold that turned into asthma with a continuous headache that just would not go away. She started waking up every day with a migraine, depressed with no energy. We had to wait three months to see a pediatric neurologist. Meanwhile, I would take her to my chiropractor early in the morning, give her an Excedrin, and she would go to school whenever she felt better. She began drinking at least 2 cups of coffee every day to help with the pain. Sometimes she would go to school at 11am, sometimes at 1pm. Even if there was just one class left, she would go to school. At this point, she felt that she wouldn’t have a future.

When we finally went to the neurologist, he recommended amitriptyline. I had been on amitriptyline and woke up one day not knowing which year or season was, but I was told that the issue was the high dose given to me (125mg), after decades of it increasing it every year. I agreed as long as it was a low dose. Amitriptyline lessened the continuous headache, but it was not really gone, and she still needed some Excedrin. She started daily aspirin as well. She was just getting by day to day trying to manage her pain and mood and trying to have a normal teenage life.

Increasing Weakness When Outdoors: Untangling Root Causes

She became very weak whenever we would go to the beach or to a park. We would have to drag her indoors and give her water. On some occasions, she would say that she could not see. Somehow, she successfully managed to graduate from high school. We started seeing functional doctors. We found that she had some variants related to mitochondria dysfunction, but we really didn’t know how to address this. We also found out that she had Hashimoto’s and antibodies against intrinsic factors, which was indicative of pernicious anemia. We knew right there, that she had issues that conventional doctors had missed.

We also did a Dutch test and found that all of her hormones were high. The functional doctors suggested sublingual B12, folinic acid, and a B complex. She said the vitamins made her feel awake for the first time. However, chronic fatigue was still a major struggle for her. Eventually, she had to stop folinic acid because it made her depressed and unmotivated. Meanwhile, she managed her anxiety with herbs, but it was a real struggle. She also continued to have asthma requiring albuterol every fall season. She chose a very challenging career in cell biology with biochemistry. She went through college with many cups of coffee just to control migraines, have energy, and be alert.

Discovering Her POTS Symptoms

The summer of 2019, before her senior year of college, the nurse checked her vitals as part of her new summer internship. The nurse thought the pulse monitor was broken because her heart rate was 120 sitting down. After a few minutes, it went down to 99, so the nurse dismissed it. When she told me that, I started paying attention to her heart rate. We went to her physician and neurologist and in both instances, her heart rate was 100, just sitting down waiting for the doctor. I asked if it was normal, and they said that it was in the upper range but not a concern. I was still concerned and made an appointment with a cardiologist but also bought her an iwatch. She noticed right away how her standing heart rate would be over 100, and by only taking a few steps, her heart rate would go even higher and she would become fatigued and even dizzy. From the heart rate monitor on her iwatch, we could see how quickly her heart rate would climb upon standing and then slow a bit when sitting.

That is when I remember that I have read about POTS and hypermobile people. I remember that when she was a child, the neurologist had said that she was hypermobile, but never said that it could be a problem for her. It just seemed like a fun thing to have. I started asking in health groups and someone mentioned that her medications could also cause high heart rate. I searched and amitriptyline did have that side effect. That is when my daughter showed me that her resting heart rate was in the 90s and it would fluctuate from 29 to 205 without exercising. When we went to the cardiologist and explained all of this, he said that he did not even know how to diagnose POTS because it is rare. He did testing and said that the heart was fine but there was some inefficiency due to some valve leaking but that it usually does not cause symptoms. I asked about amitriptyline and he confirmed that it could raise heart rate. At that point, she stopped amitriptyline and her maximum heart rate was 180 instead of 205.

She went back to her last year of college when Covid hit. She came back home and we could see the lack of energy and how much doing any little thing or stress would crash her for days. Since I needed glutathione for chemical sensitivities, I decided to see if it would help her. Glutathione with co-factors helped her recover, instead of crashing for days, she would recover the next day. That is when she told me that every time she walked to school, she felt that she would pass out. When she gets up in the morning, she ends up lying on the floor because of dizziness. Despite her dizziness, daily muscle pain, daily migraines, and chronic fatigue, she had big dreams. She just kept pushing through day by day, with coffee, herbs, and whatever it took, but she knew that something had to change. She successfully graduated in May, Magna Cum Laude, and she had a couple of months to deal with her health before she would leave to start her graduate studies and research job. That is when I found people that knew about Dr. Marrs’ work and thiamine, and her life finally changed.

Introducing Thiamine and Other Micronutrients: Navigating the Paradox

A functional doctor recommended magnesium and niacin for her migraines and they significantly helped. This gave the functional doctor the idea to try tocotrienols. High doses of tocotrienols worked better for reducing her migraine pain than amitriptyline and aspirin combined. Then she started taking high doses of B6. This helped her muscle pain and improved her mobility. Despite being hypermobile, easy stretches gave her intense muscle cramps prior to starting B6. Guided by very knowledgeable researchers belonging to Dr. Marrs’ Facebook group, Understanding Mitochondrial Nutrients, we started Allithiamine. The first thing she said was “wait, the sun does not hurt?”. I asked her what she meant. She explained that all her life, being in the sun gave her pain in her eyes and forehead and that she couldn’t understand why people wanted to be outside. No wonder she never wanted to go outside. She also said her migraines were gone. We have waited 4 years to hear that!

After just a couple of days, she started having a lot of nausea and lower-intensity migraines returned. The researchers knew right away that she needed more potassium. She started to eat apricots, coconut water, or orange juice every time she had nausea and it helped. However, it was happening every hour so we decided to try a different Thiamine. We tried half Lipothiamine and Benfotiamine but she didn’t feel as much benefit and still gave her issues. We went back to 1/10 of Allithiamine. Chatting with the researchers, one asked if she also experienced blinding episodes. Yes! Finally, someone that knew about that! They recommended B2 and we started it. That’s when we discovered that her pain in the sun and dizziness were caused by a B2 deficiency. She continued waking up with crashes needing potassium every hour. She did not sleep that week. The researchers suggested taking cofactors including the rest of the B vitamins, phosphate salts, phospholipids, and beef organs. Beef organs and phospholipids helped with energy and bloating, phosphate salts helped with nausea and irritability.

Then researchers suggested that she needed to stabilize sugars and have more meat. That is when we realized that she had some type of hypoglycemia. We had noticed that she would get very tired and got shaky hands if she didn’t eat. Functional doctors had mentioned that she may have reactive hypoglycemia since she had a fasting glucose of 70. She started having more meat to stabilize her sugars and removed all packaged foods, sugars, grains, and starches. She started having just fresh meat, veggies, rice, beans, nuts, and berries. She felt that she was so much better with beef that she started using it for potassium between meals and bedtime.

She was able to increase allithiamine little by little. She would mix a little bit with orange juice since it tasted so awful. Little by little, she started having fewer crashes and feeling better. It took a month for her to be able to tolerate one capsule of Allithiamine. She was sleeping more but not the whole night. That is when our functional doctor suggested supporting adrenals. That really helped but then she began having stomach pain and nausea after eating beef and developed frequent diarrhea. Chicken always increased her hunger and reduced her energy compared to beef and but now she was afraid of having beef. She stopped all sources of beef and phospholipids.

We consulted a very good functional doctor. She did Nutraeval and confirmed that all her B vitamins were low or deficient and recommended TUDCA and Calcium D Glucarate along with trying lamb and bison first. Both helped in reducing bloating/nausea and she was able to start eating lamb and bison along with reintroducing a minimal amount of carbs. Soon after, she was eating beef again with no pain. After starting TUDCA, her bilirubin levels were normal for the first time in her life. We continued to work with the functional doctor to fix other deficiencies.

Recovery from Multiple Nutrient Deficiencies and the Prospect of a Normal Life

After Allithiamine and vitamin B2, we worked with our functional doctor to balance the remaining B vitamins. She is now able to go out in the sun without bothering her eyes and without passing out. She gained weight after starting the B vitamins and began looking healthier, compared to how skinny and underdeveloped she looked before. She also learned how to manage electrolytes. She sometimes needs more sodium, but other times needs more potassium. She feels sick when electrolytes get out of balance. Although she still had some continuous pressure in her head, she no longer needs any amitriptyline, aspirin, or Excedrin for pain. One thing that remained problematic was folate deficiency. She still became depressed with folinic acid, so she tried methylfolate instead. She felt so unmotivated that preferred not to have it, but she realized that it was key to something that she struggled with all her life: anxiety. She figured that she could have methylfolate every other day, so that she could have less anxiety.

Now, for the first time, she began to have a normal life. She can now exercise daily without dizziness and her heart rate skyrocketing. Her heart rate in general is more normal, doesn’t go down to 29 or up to 205. She had not had any asthma requiring albuterol. She started driving without having to deal with anxiety and panic attacks. She was able to walk to her office without fainting. She now can now live alone dealing with the stress of having a full-time job, graduate classes, cooking her food, and exercise every day! She is not cured completely but for a person that once thought she couldn’t have a future, she is doing pretty darned good!

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, and like it, please help support it. Contribute now.

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This article was published originally on July 22, 2021.

Dysautonomia and Chronic Illness Post Brain Surgery

by Silvi Si

Published on April 19, 2023

7618 views

I wanted to share my experience going through thiamine paradox and my journey to heal. I am 27 year old girl from Italy and have been suffering from various health problems since I was 14 including a brain tumor that necessitated surgery, followed by Epstein Barr Virus, Hashimoto’s thyroiditis, multiple parasitic infections, antibiotic reactions, extreme and chronic fatigue, fibromyalgia, dysautonomia, SIBO, and gastroparesis. I have begun thiamine therapy six months ago and while some of my symptoms have improved, others have remained or worsened. I am not sure what to do next and am writing this in the hope that someone will have some answers.

Dysautonomia and Illnesses Post Brain Surgery

In 2008, I underwent neurosurgery to remove a benign tumor in my temporal lobe. It was very large, near the hypothalamus and on the optic tract. After that surgery, I was in sympathetic mode for about a year and a half. It was intense. I was always alarmed and anxious with school performance anxiety. I was exhausted, but at the same time, I had the energy to do more than I could afford. Furthermore, I gained 20kg in 6 months despite eating well. This was traumatic for me. Even though I did everything I could to not gain weight, the weight still went up. I felt powerless and I was pissed off. I did a thousand diets and I still fight to lose weight. I have been on a diet ever since.

In 2010, I got an Epstein-Barr viral (EBV) infection. Next, I developed Hashimoto thyroiditis and lost a lot of hair. My beautiful hair that was soft and silky, became sparse, few and very thin. I also had pain in my neck for two years. After that EBV infection, I started to feel tired all the time, but still managed to go out and go to school

In 2011, after a month and a half of pain in the lower back and abdomen, I had a fecal analysis done and found that I had parasitic infection called blastocystis hominis. The doctor gave me metronidazole (Flagyl) in a very high dosage. When the pain in my right leg appeared, the suspicion that it was appendicitis became certain and they operated on me. The surgeon told me my appendix was was 12 centimeters, inflamed and had two abscesses.

In 2012, I had some months of extreme fatigue and abdominal pain. The seizures I had before my brain surgery returned, as did my inability to study due to lack of concentration. I then discovered that I had another parasitic infection, this time giardia. I was treated with Flagyl again. After Flagyl, I was infection-free for 6-7 months.

In March of 2013, I developed an acute onset case of what the doctor’s called a severe case of chronic fatigue, fibromyalgia, and dysautonomia. I had brain fog and was unable to focus. I had tingling in my neck arms. I started gaining again. I have episodes of dysautonomia with vagal crises that include palpitations and tachycardia so strong that even moving around in bed accelerates my heartbeat. Add to all of this a plethora of other minor symptoms. In particular, I have become unbearably cold. Previously, I was the the person who was always in half sleeves. I have also mood swings that sometimes make me feel crazy (such as unexplained nervousness attacks). I felt I had no energy in my muscles and that I could not do anything. Even though and above all I was a girl full of energy and always very cheerful.

Failed Attempts at Healing

Since then, I have done many different types of therapies (homeopathy, mineral and vitamin integrations, neural therapy, micotherapy, osteopathy) with small and short improvements. In 2017, I did probably one of the stupidest things I’ve ever done before, I fasted for 16 days. I was convinced of the idea that it could cure my thyroiditis. After that, I started not digesting well, so much so that if I ate a little more than I should, I was throwing up, and the cold in my body became even more unbearable.
A few years later in 2019, after years of GI problems, that included gastroparesis/delayed stomach emptying, bloating and pain, I was diagnosed with SIBO (sulfur). I was given Rifaximin. I also tried a herbal therapy for SIBO, and for candida, which I also had, and NAC. Nothing worked.

Where I Am Now

I still have most of these conditions. Some symptoms have passed but new ones have emerged. Overall, I am better than in 2013 when CFS started and I just couldn’t get out of bed.

A few months ago, I discovered Dr. Lonsdale’s work on thiamine deficiency and I bought his and Dr. Marrs’ book: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. I believe many of health issues involve thiamine deficiency.

I began with 15mg thiamine HCL injections daily for about two weeks and then increased it to 30mg per day. I also take B complex, magnesium, seleniomethionine, molybdenum, vitamin C, vitamin D, omega 3, zinc and copper because they were low in my blood exam. The first month I also took SAMe with many benefits, but now it seems to make things worse.

I eat only organic food. I don’t eat sugar, processed food, junk food, gluten, milk or dairy products, or alcohol. I have only one or two espressos per day and I eat a lot of apples because they are low in oxalates.

Thiamine Reaction or Something Else?

When I woke up on day 2 of thiamine, I saw that my eyes were swollen like balloons, there were some itchy blisters on my eyelids and around the eyes. In the morning other blisters appeared on my elbow and behind my neck under my hair. The morning of day 4, I woke up with a skin rash near the hip.

At the beginning, I had thought these reactions were relative to the thiamine, but I later realized that the hives and swelling were linked to the inositol hexanicotinate, a niacin substitute in the B complex. I have no problems with niacin though, just the inositol hexanicotinate form. From that episode forward, I began taking all the B vitamins separately.

After 2 months of thiamine HCL, I added allithiamine. I began with 1 pill, 50mgs, and I added another 50 mg pill every week, until I reached 300mg. Initially, all the symptoms I had at the beginning of the disease reappeared: severe myalgic attacks in the leg or abdomen, abdominal pain, other pains and unbearable cold in the whole body, especially in the hands. The chills are so severe that I am often shaking. It is so severe that it paralyzes me. This shaking disappeared in a few weeks, but sensation of being cold still persists. And I am still very tired.

After Six Months of Thiamine Therapy

There are some improvements from since I started with allithiamine. For example, my fatigue has improved. Although I always have chronic fatigue, there are times when I feel better for a few hours. Before starting the thiamine, I had frequent attacks of voracious hunger during which I never felt full. I’ve always tried to ignore them, because if I’m not on a strict diet, I am gaining weight. Since taking thiamine, this happens much more rarely and my sense of fullness has improved. Finally, I have fewer nervous attacks. My digestive system seems to be little better. What I am currently taking:

Allithiamine – 300mg
Riboflavin – 320mg
Niacin – 100mg
Pantothenic acid – 200mg
Pyridoxine – 20mg
Myo inositol – 2gr
Biotin – 5000mcg,
B12 – until a few months ago. It was low and now it is high.
Zinc – 30mg
Copper – 2mg
Omega 3
Inulin – 2gr
Keppra – 250mg x2 a day
Molybdenum – 200mcg
Seleniomethionine – 200mcg
NAC – 1200mg
Magnesium malate – 1800mg
Magnesium citrate – 1500mg
Vit C – 2gr x5 a day
Lysin 1gr
Vit D – 10000 UI
M2MK7 – 100mcg
DHEA – 50mg
Maca powder – 5gr
CoQ10 – 100mg
LDN therapy – since March 2020

I still have the symptoms of the paradox effect. It has been almost 6 months since I started thiamine, how is it possible? The worst symptoms now are fatigue, frozen hands, shivering. Is the thiamine not working or is something else going on? Could it be that the thiamine revealed some other deficiency that is causing me this reaction? I’d like to know whether I should continue to take it.

A warm hug from Italy.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on May 17, 2021.

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

by AMZ

Published on June 7, 2022

28278 views

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 21^st, 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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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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

Recovering From Medically Induced Chronic Illness

by KJ N

Published on February 6, 2020

8798 views

Unexplained or Medically Induced Chronic Illness?

“Unexplained.” That’s what doctors say about 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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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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

by Eva TM

Published on July 16, 2018

9270 views

thiamine deficiency - light at end of tunnel

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 Fluorquinolone 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:

The urinary frequency since I was born could have something to do with thiamine deficiency? Would this suggest some kind of genetic problem?
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?
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?
I have read about 50mg Allithiamine, with large doses of magnesium and a multivitamin, but how high should Allithiamine go – 200mg, 300mg?
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.
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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Thiamine, Fibromyalgia and Chronic Fatigue

by Chandler Marrs, PhD

Published on January 16, 2017

11028 views

thiamine deficiency in fibromyalgia and chronic pain

Fibromyalgia affects roughly six million Americans, mostly women. Its symptoms include all-over muscle and tendon pain, increased pain sensitivity, chronic fatigue, sleep disturbances and brain fog. Fibromyalgia is often reported as feeling like a flu that never leaves. Similarly, symptoms of Chronic Fatigue Syndrome (CFS) overlap with many of those of fibromyalgia and the two conditions are often co-morbid. With chronic fatigue, however, the predominant symptom is a fatigue that never lets up versus all-over muscle and tendon pain.

Both fibromyalgia and chronic fatigue are co-diagnosed frequently in women with endometriosis, especially those who have had Lupron treatments. Similarly, we are finding a high incidence of chronic fatigue and fibromyalgia post Gardasil/Cervarix and post fluoroquinolone. All over muscle and tendon pain, coupled with never-ending tiredness seem to be common symptoms post medication or vaccine reaction. Could they be linked to a broader problem, specifically, thiamine deficiency?

What is Thiamine?

Thiamine or vitamin B1 is necessary for cellular energy. It is a required co-factor in several enzymatic processes, including glucose metabolism and interestingly enough, myelin production. We can get thiamine only from diet. When diet suffers, as in the case of chronic alcoholism where most of the research on this topic is focused, when nutritional uptake is impaired (leaky gut and other GI disturbances), or when other factors inhibit the enzymes necessary to carry out intracellular reactions, thiamine deficiency ensues. And thiamine deficiency can elicit a whole host of problems that are consistent with the current definitions of chronic fatigue and fibromyalgia.

Thiamine and Fibromyalgia – A Few Hints

A recent case study suggests that what is currently diagnosed as fibromyalgia and/or chronic fatigue may be attributable to thiamine deficiency. A very small case study (n =3) from Italian physicians found a significant reduction in fibromyalgia symptoms in patients given high dose thiamine. Researchers found:

Patient 1: 71.3% reduction in fatigue; 80% reduction in pain.
Patient 2: 37% reduction in fatigue; 50% reduction in pain.
Patient 3: 60.7% reduction in fatigue; 60% reduction in pain.

Thiamine and Chronic Fatigue

In a little bit larger study – 17 patients with Chronic Fatigue, researchers found a functional reduction of the enzymes involved in vitamin B metabolism (aspartate aminotransferase -pyridoxine, glutathione reductase and transketolase) compared to healthy controls, suggesting thiamine deficiency.

What This Means

It’s way too early to tell if thiamine deficiency is at root of fibromyalgia and/or chronic fatigue symptoms, or if adverse reactions to medications and vaccines can elicit the symptoms of fibromyalgia and chronic fatigue, but there are hints pointing in that direction. Much more research should be done. In the meantime, if you suffer from fibromylagia or chronic fatigue or undiagnosed neuromuscular pain, why not consider testing for thiamine. And while you’re at it, since many of these symptoms overlap with those of hypothyroidism, particularly of the autoimmune Hashimoto’s sort, why not get tested for that too. If you test positive for either of these, tell us about it, it will help other patients find solutions. To learn more about thiamine deficiency and other topics, search our growing library of research and patient stories here on Hormones Matter.

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This article was first published on Hormones Matter in October, 2013.

A Life Journey to Wellness – With Chronic Pain and Fatigue

by Robyn Myers, PhD

Published on April 2, 2015

3891 views

Today much is made of being healthy, of the importance of health and wellness. I have always been “healthy” – I still am technically, even with my chronic pain and fatigue conditions. But through the years I have come to think of health as my Doctor does, as things like a healthy lifestyle with good food and regular exercise, a healthy weight, good blood pressure, normal lab work. I have those things. When I think of “wellness” I think more of my “well being” instead of whether or not I am feeling good at the moment – because for the past 15 years I have had pain and fatigue and other symptoms every single day. In fact, I haven’t had a day without joint pain since my second Lupron shot back in 2001 – but more on that below.

But I have had a few pain free hours, and with “skills and pills” (as my Chronic Pain psychologist used to say) I can get my pain and discomfort to fade into the background for a while most days. I have learned that I can feel good about feeling bad – well, or to at least be “okay” with it. I have also applied all my skills as a research scientist (in Ecosystem Ecology) to my own medical condition. This has given me a sense of power and control over the uncontrollable nature of the symptoms caused by my chronic conditions (I have several) – but all were eventually eclipsed by the diagnosis as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS – also known as ME/CFS/SEID etc…). Whether they are caused by hormonal, mitochondrial, nervous or immune system related problems (probably all of the above), does not really matter in my day-to-day management of my symptoms, since there currently are no treatments. I manage my symptoms by eating healthy, walking and doing yoga for exercise, making sure I get good sleep, and pacing my activity and rest. I am able to be active at a slower, relaxed pace. I am working hard to be as “healthy” as I can be, treat my symptoms individually, and I try to focus on my wellness and well being. Our bodies are amazing things, and though I have felt for years than mine let me down, I have discovered that in reality it is a complex and amazing thing. Even with genetic predispositions and chemical assaults, I am trying to support my body so that it has the best chance to heal itself, and I am getting better.

For those who want the details of my predisposing conditions and my healthy journey with endometriosis, Lupron and CFIDS, here is a more or less chronological account:

Pre-disposing Conditions

As a baby I often had allergies with earaches and fevers. This was considered normal. When it is actually a sign the immune system is kicking into action for things in the environment that “should be” normal. For me they were an allergen.

In elementary school my knees and ankles hurt, and all my joints were “funny” – in that they bent back farther than everyone else’s, which was entertaining on the playground. The Pediatrician said this was nothing to worry about and these were “just growing pains.” He suggested my parents have me take ice skating lessons to strengthen my ankles. In fact, 35 years later I was diagnosed with benign hypermobile joint syndrome, a condition which causes joint pain, inflammation and other symptoms.

We are Born with Endometriosis

At age 12, with my first menstrual cycle I had horrible cramping pain. I was told “this is normal for some girls” and given a hot water bottle and told to take Midol®. I knew this was not “normal” but no one could tell me why I felt this way when my girlfriends did not. My mom understood and taught me coping skills so that the pain would not stop me from enjoying life. Each month the pain worsened. I can recall my major life events in my teens and twenties by whether (or not) I was on my period and in terrible pain. By my mid-twenties I had to miss a day of school or work a month to manage the pain. I was prescribed Motrin® and birth control pills to manage my cycles. Over time pre-menstrual symptoms began, so I had pain and discomfort before and during my periods. It felt like I was just recovering from one cycle, and could enjoy one pain-free week, and then PMS would begin the cycle all over again. My doctors were sympathetic but really could not do much for me. They offered birth control to help control my cycles. I started with low-dose pills, which would help for a while, but as pain and heavy bleeding would return they would move to a stronger pill. In my late 20s a diagnostic laparoscopy confirmed I had endometriosis and fibroid tumors. It explained all I had been experiencing since age 12. I felt vindicated that I had been going through was NOT normal. But all they could do was recommend I go off birth control, so that my husband and I could try to have a baby as quickly as possible. I stopped taking birth control, knowing my abdominal pain would get worse, but we hoped to let nature take its course on the timing of a baby.

Odd Mono-like Viruses

During the 1980s, in my 20s, in college as an undergrad and after periods of high stress (such as finals), I had several multi-week episodes of fatigue, sore throat, swollen glands, flu-like symptoms. I was always tested for Mono (which always came back negative) and was always told I “had a virus.” I always bounced back from these, and went back to my worsening month-to-month endometriosis symptoms.

Hypothyroid Hormone Crash

I was in Graduate School in the 1990s, in my 30s, and having the time of my life doing research I loved and advancing my career. However, after the high stress of prepping for and passing my PhD oral exams in 1994 I crashed, as “everyone does,” but this time I didn’t bounce back. I was beyond tired with a new the bone crushing fatigue (I attributed the many other vague symptoms to my endometriosis). I guessed I might be anemic from my heavy bleeding during my periods, but my blood work showed a high TSH level, indicating, that at age 35, I was hypothyroid.

As most do, my doctor prescribed Synthroid® which restored about 80% energy, but my endometriosis was worsening with menstrual migraines and month long pain. One lesson I learned was not to assume that all my symptoms were related to my endometriosis, although the hypothyroidism had almost certainly made my endometriosis and infertility worse. By the end 1997, since I already had secured a good career position, so that when I filed my dissertation my inability to get pregnant and my endometriosis were my primary concerns.

Infertility Treatment Treats Endometriosis

When I was unable to conceive and wanted to get pregnant, I was referred to a Reproductive Endocrinologist. He did extensive testing, followed by extensive surgery to remove numerous marble sized fibroid tumors and patches of endometriosis (treatment that, at least in the 1990s, was not offered to me unless I wanted to have a baby). What followed was three years of infertility (IF) treatments, with repeated cycles that included my doctor balancing my hormones, then giving me stimulating hormones to grow eggs, followed by interuterine insemination. I knew the IF process would caused the endometriosis and fibroids to regrow, and two more laparoscopic surgeries were needed to remove them again, as well as scar tissue caused by the previous surgeries, to give me the best chance to conceive. We were not successful, but at least had no regrets for not having tried.

Lupron Treatment

However, I was left with worsening abdominal pain from endometriosis and fibroids stimulated by the fertility drugs, and very difficult choices to make regarding treatment. I considered hysterectomy but I really wanted to avoid it because of my scar tissue issues, and because I wanted to keep my ovaries. I researched Lupron and knew there were risks. What I didn’t know was that I had pre-disposing conditions that made it riskier for me and more likely I would have a bad reaction. We were more concerned about scar tissue causing lifelong abdominal pain if I had more surgery. Lupron seemed like the conservative choice to shut down the endometriosis and shrink the fibroids. I was told the treatment would be six monthly Lupron Depot injections. I insisted on, and my doctor agreed to, low dose hormone add-back therapy (estradiol and progesterone, prescribed separately) to minimize side effects.

With my first Lupron depot monthly injection (in Dec 2000), I had the expected mild menopausal side effects. The second injection the following month added severe joint pain in all paired joints to the hot flashes and other symptoms, but in addition, my abdominal pain went down! I was told that the joint pain should go away after about 6 weeks, but unfortunately, it did not. By the end of Lupron treatment my abdominal pain was reduced by half (and was considered a success) but my Doctor recommended we stop treatment after 5 injections due to the joint pain. I was assured the joint pain should stop with the treatments. In fact, it has never gone away. Eventually, I was referred to a rheumatologist. I reported my negative experience with Lupron to the adverse drug events sections of the FDA.

Post Lupron Joint Pain

My doctor recommended that I take the birth control Depo Provera to try to maintain the “Lupron gains.” This was mid 2001, and it worked for a while, before the abdominal pain and bleeding slowly returned, and then worsened. During this time, I still thought the endometriosis, hormones and abdominal pain caused the fatigue, nausea, and unwellness I was experiencing. Between my primary care doctor and my rheumatologist, they were treating my individual symptoms and watching me become more symptomatic. By 2002 my joint and abdominal pain was so bad I was on 8 vicodin a day and high dose ibuprofin.

Chronic Pain Clinic – “Skills and Pills”

I was referred to a chronic pain clinic (CPC) to receive better prescription pain management and cognitive behavioral therapy which helped me to learn coping skills like mindfulness meditation, self-hypnosis, and other skills in order to “feel better about feeling bad.” Thanks to the “Skills and Pills” of the two year Chronic Pain Clinic program, my pain was now under better control. I was still working fulltime, but more and more days from home a few days a week now as the fatigue, brain fog, headaches, flu-like symptoms all worsened along with the ab pain.

Minimally Invasive LAVH-BSO

At this point, I am still thinking all the fatigue and other symptoms are primarily from endometriosis pain, and that Lupron triggered the arthtitis due to HMJS. My rheumatologist blamed the Lupron for triggering it all (still does). My primary care doctor, rheumatologist and Pain Doctor all witnessed my decline. By the Fall of 2003, I was bleeding so badly I sought a referral for a minimally invasive GYN for an LAVH-BSO. To manage the endo, it was agreed the ovaries had to go. He did a great job. I have only very mild discomfort around my bikini scar – otherwise no further ab pain at all. I went on Vivelle Dot patch immediately. Minimal menopause symptoms at age 44.

Diagnosed with CFIDS

The Joint pain continued and the rest of the ME/CFS symptoms intensified through 2004-2005…I was struggling to keep working 3/4 time with “reasonable accommodations”, getting sicker and taking FMLA because I was out of sick leave. I was working so hard trying to keep working. Finally, an endocrinologist in 2005 said I met all the criteria for CFIDS (and told me it was ridiculous to blame the Lupron…she was wrong). My pain was managable but not the fatigue. I took the Bruce Campbell course in managing ME/CFS and added “Pacing” to my list of skills. By late 2006, I was facing medical retirement after 22 years and by June 2007 I was out on Federal Disability Retirement at age 48.

Thanks to my Kaiser Doctor’s observing my decline and my own ability to write, I was awarded SSDI on first appeal in 2008. Technically it is for chronic pain but really it was the fatigue, flu-like symptoms and brain fog that kept me from working. And still today keeps me from being as active as I once was.

Living Well with CFIDS

These days I have to sleep 8-10 hours per night. I used to take daily 2 hour naps but since starting Armour Dessicated Thyroid with T3 (in 2013), I get by with horizontal rests, not daytime sleep most days now. I have a 1:3 activity to rest ratio – for each hour of activity, I need about 3 hours of rest. I consciously “rest before and recover after” extra activities not part of my daily routine (from laundry to a doctors appointment to dinner out).

I keep regular hours, and most days I am able to make meals, take a 30-60 minute walk and can manage one “extra activity” per day. I do a bit of volunteer work. I leave the house 3-4 days a week for 1-3 hrs without a setback, depending on what I do. I can grocery shop (with effort) but no longer shop for pleasure. Despite this careful pacing ANY infection, social event, life stressor, or simply too long duration of mental, emotional or physical activity can tip me over into Post Exertinal Nueroendocrine Exhaustion PENE. I have a 36-48 hour PENE/PEM response (the time from the over-exertion to the crash) with increased flu-like and CNS symptoms and usually must rest 3 times as long as whatever caused the crash took to do. After a bout of flu or an abscessed tooth, I have had bad dysautonomia episodes that resolved over weeks or months to my “baseline” – my “new normal” since Lupron activated or switched on (or off) a gene or damaged my mitochondria and reset that baseline. For me, the Lupron was the turning point. It is a tough balancing act. But I have worked on pacing, keeping healthy and being as active as I can.

Ironically my husband of 30 years has Fibromyalgia and knows keeping active helps him. So we support and encourage each other. He helps me be active and I remind him to pace and rest and we have a happy life, all things considered. He was able to retire at 55 so we are able to manage our conditions and enjoy life. We have a truck-camper RV and a small cabin-cruiser boat from before I got sick, both of which have allowed me to travel and do things at my own pace, with my own bed, bath and kitchen. Whether we are visiting family or traveling the West, this kind of travel allows me to be as active as I can without causing crashes. We are both very grateful for all we have.

It seems there are many ways to end up with the same or similar body response and set of symptoms that is ME/CFS and/or Fibromyalgia. For me if it hadn’t been Lupron, it would probably been something else since I have so many co-morbid factors. Understanding this has helped with acceptance. And knowledge is power. I know there are no ways, yet, to reset the genes or fix the mitochondria, or other body systems that no longer work as they should, but I am hopeful researchers, who care and collaborate, will find the answer. In the meantime, I will work to be as healthy and well as I can be.

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