endometriosis

Early Abuse, Poor Nutrition, Endometriosis, and Thiamine Deficiency

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child abuse, endometriosis, thiamine deficiency

I feel like I was born sick. I feel like despite working passionately and obsessively hard at reaching for good health, every single minute of every single day of my life has required Herculean effort. I am the product of an abusive childhood. There have been studies done that an abused child invariably grows into a sick adult. I believe this to be true. I think my adrenals were burnt out by the time I was 2 years old.

My earliest memory is at 14 months old.  I was wearing a new Easter dress and my mother wanted to take my picture. I remember looking beside me and seeing a flower and wanting to smell it. As I bent down to smell the flower, which is not what my mother wanted me to do, rather than taking a picture of her lovely soft toddler smelling a flower, she whacked the back of my head and smashed my face into the concrete.

The attacks were always this way; brutal and unpredictable. My face was held in a bowl of hot stew because I wasn’t chewing the way she wanted me to when I was 3 years old. I am tightly tongue-tied and tongue-tied children struggle with being able to manipulate the chewing-swallowing process. We were made to sleep naked and shivering in the bathtub when we had stomach flu so that she wouldn’t have to clean our sheets. I don’t remember a single day of my childhood that was not filled with the crazy butterfly feeling in my stomach of being in continuous flight/fight or freeze, although “fight” was never an option. I imagine I used up all my B vitamins in infancy and they were not replaced. I do assume that the abuse was experienced in very early infancy.

Low Nutrient Diet

Conditions I have had since early infancy include intractable insomnia, constipation, severe motion sickness and histamine intolerance. I don’t imagine that this mother, whose coping mechanisms allowed her to smash a baby’s head into concrete, would have allowed for a kind and gentle response to an infant who could not nurse properly (due to the tongue tie), or could not sleep, had tummy pain from constipation, and vomited every time she put me in the car.

I do have a brain that has a higher than usual requirement for nutrients. I was a self-taught reader. I was reading at a second grade level by the time I was 3 years old, and thankfully, was put into the school system early. This turned out to be the only hours in my day where I wasn’t anticipating abuse.

Although we were comfortably middle class, we were raised on a very low nutrient diet of my mother’s comfort foods. We had cereal for breakfast. Lunch and supper were almost invariably white rice cooked in milk and generously topped with sugar and cinnamon, or noodles with butter and sugar, or pancakes with jam or sugar, or bread with butter and sugar followed by cake or pie.

Headaches, Nausea, Infections and Joint Dislocations

As a child, I had daily headaches, frequent nausea, very low energy, frequent infections, muscle pain all over my body, and joints that subluxed/dislocated. I almost always have at least one joint dislocated, most commonly thumbs, wrists, ankles, ribs, cervical spine, TMJ. Additionally, I was diagnosed with scoliosis, asthma, and anemia. At 12, the family physician told me I would be in pain for the rest of my life because of the multiple fractures I’d sustained to the coccyx, torn ligaments in the SI joint, and a rotated pelvis. What a thing to tell a young child! His only solution was that I should take Tylenol every 3 hours for the rest of my life, which was no solution at all. I have continuous low back pain, an SI joint that dislocates daily, and hips that have torn labrums and dislocate or sublux. I was a competitive figure skater and took many falls. I competed with broken toes, a broken tailbone, and took many blows to my head.

I am in constant pain and cannot remember a time when I was not. Currently I can stand for only periods of 30 seconds or less before having to lie flat on the ground to relieve the pain. I had an insatiable appetite. I could eat easily 3 to 4 times the size of servings that my father would eat, and I’ve never had a “full button”. I have always been extremely underweight, despite eating huge amounts.

Endometriosis, Veganism, and Osteopenia

My menstrual cycle started horribly when I was only 10 years old, and I went through seven laparotomies in my lifetime with diathermy. They were all excruciating and left me emaciated, butchered, and in intractable agony. The surgeries were done by General OBGYNs who had absolutely no business doing stage 4 endometriosis surgeries. I also do not respond normally to medications. For example, morphine increases my pain response, and I essentially went through the first two major surgeries with no pain relief.

As a teenager, in order to try to cure myself, I started experimenting with diet. I regrettably turned to vegetarianism / veganism and continued with veganism for 24 years. As I got weaker and weaker and more and more sick, I figured I only had to be stricter with my diet and eventually ended up eating only raw fruit and vegetables. Despite all this, I headed off to University at the age of 16, and completed a double degree with a 4.0 GPA on a 4-point scale in 4 years.

Now came an endless circus of doctors and specialists who would laugh at me or throw away the list I brought in of my symptoms. They told me that if I could not even remember my symptoms and had to write them down obviously I was making them up.

I was diagnosed with osteopenia at age 24. I was given the bone density test as a precaution before being prescribed Lupron. Thankfully, the osteopenia diagnosis helped me narrowly avoid the disaster of Lupron. I have been given diagnoses such as IBS, fibromyalgia, depression, generalized anxiety disorder, lupus and arthritis (based on anti-DNA positive test), and celiac disease.

Idiopathic Fractures, Word Loss, and Prosopagnosia

After 24 years of being a vegan, I spent three weeks in critical care with toxic shock. On my first day home from the hospital, I began experiencing idiopathic bone fractures that would take 4-months or more to begin to fuse. I was losing my words and experiencing prosopagnosia (the inability to recognize faces of people, even those whom I saw every day such as my niece and nephew, and my best friends and their children).

I developed migraines, receding gums, difficulty swallowing, crazy painful gas, sleep apnea, hypnogogia. Hypnogogia is a sort of “waking nightmare”. It is a lapse in the sleep/wake bridge where you become suddenly awake. Your eyes are open, but you are paralyzed and your nightmare is playing out in your room. It is indescribably terrifying. I also developed voice box dysfunction, heart palpitations, and often, I could feel my heart stop/pause. Then I would fall to the ground and I would feel it rapidly start again to catch up the beats. This is in addition to many other symptoms, too many to list.

No More Veganism but Continued Ill-Health and Progressively Worsening Endometriosis

It was at this point I decided that being a vegan was indeed killing me and I switched to a whole foods only diet that included meat, eggs, cheese, nuts, and vegetables. I consumed no sugars in any form, no grains, and zero processed foods. I tried every single miracle supplement that I could lay my hands on, and nothing was making any difference.

I was just trying harder and harder and getting sicker and sicker and was so jealous of all the people that seem to breeze through life, eating crap, where I struggle to hold my arm up long enough to brush my teeth.

My endometriosis was destroying me. I would bleed through the menstrual cups that are meant to last 12 to 18 hours literally every 7 minutes,  just lying on the bathroom floor and getting up only to empty the cup. I gathered the blood from the cup during one cycle (too much information, I know) and it filled a peanut butter jar.

I wanted to do this to take it with me when I went to the ER because no one would ever believe me when I tried to describe how much blood I was losing. I had a final endometriosis surgery with complete hysterectomy at age 40. The surgery was done by a specialist whose only job is endometriosis surgeries, and she said mine was the worst case she’d ever seen. The surgery took 7 and 1/2 hours.

A Glimmer of Hope and a Setback

I was lucky enough before this surgery to have been referred to a psychiatrist (because I am crazy and create all these painful and debilitating symptoms to amuse myself) who ended up being a functional medicine enthusiast and Fellow.

His treatments are based almost exclusively on bioidentical human hormones and nutrients (though he has never mentioned thiamine, and is unaware of Dr. Lonsdale’s work). The combination of finally finding a physician who not only listens to me (he spent over 3 hours with me and my first consultation), but also believes me, and getting rid of the constant pain and bleeding were a big blessing for me.

I discovered a magnesium supplement that I could tolerate, and for the first time in my life I was sleeping like a normal person, and having normal bowel movements. My energy was good and I felt well. UNTIL my beloved husband suffered a heart attack. He is well now, but the shock and the fear were the final straw on this camel’s back.

I came down with mononucleosis about 3 weeks after his heart attack. My spleen was grossly swollen and I was bed bound for over 4 months. I felt that any progress I had made had completely disappeared and I was back to being an intractable insomniac with every other symptom just blown out of proportion.

The Ray Peat Diet Mistake

It was at this time while researching “lifelong insomnia”, I came across the suggestion to try niacinamide. It helped so much, and I wanted to look further into the doctor who suggested this. It was the infamous Dr. Ray Peat.

Since I had gone so many years eating only whole foods and no sugars in any form whatsoever and I was still sick, the thought crossed my mind that maybe Dr. Peat was correct. So the second worst decision of my life (after the first worst decision of becoming a vegan) was to try the Ray Peat diet of as much natural sugar as I could get in my body… juices, skim milk, fruit (I would literally eat a whole watermelon in a day)

Stupid, Stupid, Stupid, I know. I was grasping at straws.

A few months into this, I experienced my first panic attack, if you can call it that. I was pulled out of sleep by this searing sick Heat at the center of my stomach that rushed all through my body.  I can’t describe it accurately, but it felt like I’d been poisoned and was going to die within minutes.

Little that I did I know that this condition would plague me for the next 3 years. When I spoke to my psychiatrist about it he said, “That’s not a panic attack. A panic attack lasts few minutes and resolves.”

Maybe Carnivore Would Help? Or Not.

My “panic attacks” were happening easily 20 times a day and resolving only to a slightly less severe form of anxiety. It would pull me out of sleep a dozen times each night. I composed a suicide note to my husband, because he was the only reason that I was staying on the planet. The same day I wrote the note, I came across Dr. Berg’s videos. Once again, I became convinced that another dietary regime would finally solve all my problems, and that very day I started a keto diet. I became even skinnier, and the anxiety receded so that I was only having one panic attack early each morning. This was a vast improvement, but I started to have reactions to most of the vegetables I was eating on keto and became aware of quite a severe sensitivity to oxalate, so I switched to carnivore and experienced no symptom improvement after six solid months. This was consuming 2kg of beef a day. I had no sense of satiation and was still way too skinny.

My body decided to reject all other foods and now I sensitive/allergic to sulphur, oxalate, phytates, histamines, am only able to eat five foods without an extreme response of fever, chills, total insomnia constipation etc. My face flushes severe when I eat any food at all and I feel flushed, and feverish with body chills and freezing cold feet.

I react strongly and poorly to even the tiniest amount of any supplement, which I realize now is just very likely because of paradox and my body is in desperate need of nutrients.

I suspected MCAS and EDS, and my functional psychiatrist/physician concurs with my analysis. I was initially elated to finally have even an informal diagnosis, and almost instantly deflated when I learned there is no treatment.

Was It Thiamine Deficiency All Along?

So it was then that I stumbled upon the video that Elliot Overton made with a woman who has EDS and has resolved her symptoms through carnivore and a thiamine protocol.

And then I found this website 🙂

I suspected I would have a strong Paradox.

I started with only a third of a capsule of a B complex.

This small dose put me into a suicidal depression unlike anything I’ve ever experienced before. I am thankful that for some serendipitous reason my husband was attached to the hip with me that week or I would have, without a second thought, walked to the train tracks and laid across them.

On the 6th day the suicidal urge lifted and I stayed with a third of a capsule of B complex and added 50 mg TTFD.

My sleep apnea stopped, but I am now in my 7th Day of vertigo.

I have experienced positional vertigo before where if I move from lying down to sitting or standing up the world spins for a few moments. This vertigo is completely different and it is washing over me almost continuously irrespective of being completely still.

I am thankful that I understand the paradox now and I am going to power through this with complete dedication in desperate hope that I have finally found an answer to a lifetime of pain, struggle, and bone crushing fatigue.

I am astounded and so grateful to Drs. Marrs and Lonsdale for all the time, knowledge, dedication, energy and yes, love, that they have poured into this site.

I imagine that I am not the only one for whom this work might be the final stop between life and death. Because of Drs. Marrs and Lonsdale and this website, I am experiencing HOPE, and that is no small thing.

We Need Your Help

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.

Yes, I would like to support Hormones Matter.

Image by Ulrike Mai from Pixabay.

This article was published originally on October 11, 2023.

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Endometriosis and Heavy Menstrual Bleeding: Two Sides of the Same Molecular Coin

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For as long as I have been studying endometriosis, I have suspected that endometriosis represented a protective cascade, one that has either gone awry or was incapable of fully eliminating or adapting to an internal stressor. To me, endometriosis behaves like cancer, not the cancer of aberrant oncogenes and tumor suppressors, though they are factors, but the cancer of metabolism, of Otto Warburg and others. I think aberrant metabolism is the key to understanding endometriosis and a myriad of other disease processes, including heavy menstrual bleeding. Until recently, however, I have not had much evidence to support this hypothesis. There is a troubling paucity of research on topics related to women’s health. Of the research that exists, much of it is focused on tried and mostly untrue conventional interpretations disease. Interpretations, I would argue, that do more to serve economic or political purposes than health, but I digress.

Over the last few years, however, mitochondrial metabolism has emerged as key determinant of health or disease. Central to this work is the role of cellular hypoxia. In order for cells to function, in order for our brains to think, our hearts to pump, muscles to contract, the mitochondria, organelles within the cells, must breathe. That is, they must consume oxygen and respire. Mitochondrial oxygen consumption results in the critically important production of ATP – cellular energy. Without oxygen, no ATP. Without ATP, nothing works. Cells die. Tissues die. Organs fail. Whether and how quickly injury or death ensues is determined by a number of factors, including the totality of the oxygen deprivation, but also, the metabolic flexibility to withstand insufficient oxygenation, even at low levels. Mitochondrial metabolism can be derailed quite easily by diet, pharmaceutical and environmental chemicals, and even a sedentary lifestyle. Metabolic alterations may transpire across generations when exposures are coincident with critical periods of fetal development and even result in de novo or first generation mutations in either nDNA or mtDNA. Mitochondrial metabolism is a key determinant of health and may in fact determine whether and how oxygenation is maintained at the cellular level.

Hypoxia and the HIF Survival Cascades

Adequate oxygenation in the cell involves a system of molecular adaptations that kick into gear during periods of hypoxia and remit when oxygenation returns. These survival cascades are initiated by oxygen sensors that trigger a set of proteins called hypoxia inducible factors (HIF1α and its counterparts HIF1β, HIF2α, HIF3α). HIFs are the master regulators of oxygen homeostasis, ensuring cell survival during periods of low oxygen. So far, researchers have identified at least 100 other proteins controlled by HIFs and tasked with bringing more oxygen and fuel into the cells. HIFs activate angiogenesis (formation of new blood vessels), erythropoiesis (production of new blood cells) and iron metabolism (oxygen carriers), glucose metabolism (substrate for ATP), growth factors, and other proteins. When all else fails, the HIF system signals apoptosis, cell death. In the short term, the hypoxia cascades are brilliant in their ability to forestall anoxia and death. In the long term, however, they wreak havoc.

If you have followed the endometriosis research, most, if not all of the proteins involved in maintaining and spreading endometriotic lesions, are controlled by HIF proteins. I suspect they were activated by disturbed mitochondrial metabolism, either causatively or consequently. Owing to the laws of reciprocity, once hypoxia sets in, it will disturb mitochondrial metabolism further, initiating a downward spiral that becomes difficult to unwind without full consideration of mitochondrial function. Of interest, these same cascades are active in preeclampsia and other diseases of modernity. In fact, I think many of the diseases we see in western cultures, are a result of long-term, low-level, cellular hypoxia mediated by mitochondrial dysfunction.

What precipitates the hypoxia and the mitochondrial dysfunction is not clear, but here again, I have some ideas. With endometriosis I suspect there are multiple factors that coalesce to generate cell level hypoxia.  Fetal and germ cell damage of our grandmothers and mothers mitigated by environmental (here, here, here) and/or pharmaceutical toxicants combined with our own exposures are key among them. For the heavy menstrual bleeding, however, I think the origins are almost entirely environmental, and by environmental, I mean the totality of the modern environment that includes diet, pharmaceuticals, and the ever-present industrial and environmental chemicals that pervade our existence.

With endometriosis, the hypoxia cascades are hyperactive. That is, HIF proteins are more prominent and seem not to be degraded effectively, suggesting a chronic or unremitting hypoxic threat. The ever-present HIF proteins then activate the compensatory cascades discussed above, promoting endometriotic lesion growth and the invasion into healthy cells. In contrast, with heavy menstrual bleeding researchers have found lower levels of HIF proteins. On the surface, this might suggest hypoxia is not involved, but I suspect it is. I just don’t know how exactly. There are hints to suggest I am correct. The question is why are the HIF proteins lower in women who bleed more heavily and higher in women with endometriosis? Is the bleeding another mechanism to deal with an unresolved localized hypoxia; one mediated perhaps by a different hormonal milieu?

Hypoxic Spirals and Mitochondrial Metabolism

In either case, aberrant HIF tells us that mitochondrial metabolism is altered. What it does not tell us is why or how. In many regards, however, the why and how may not matter. There are so many factors capable of affecting mitochondrial metabolism that determining THE factor is all but meaningless and perhaps a fool’s errand inasmuch as mitochondrial phenotypes even with the same genotypes are rarely consistent. More often than not, mitochondrial symptoms express with tremendous variability even among family members. This owes largely to the fact that mitochondria, as the cell danger sensors, are malleable by just about everything from nutritional status to genetics to environmental exposures and anything in between. In fact, something as simple as a nutrient deficiency, even a low-level one, can induce mitochondrial hypoxia. Carried out across time, the disease processes evoked appear identical to their genetic counterparts, and can induce de novo mutations generationally, effectively blurring the once hard and fast distinctions between genetic and environmental disease processes.

High calorie malnutrition, diets high in sugars and processed foods loaded in environmental chemicals but deficient in actual nutrients induce hypoxia. Many of agricultural, industrial and medical chemicals have been linked directly to endometriosis. Generationally, the effects are compounded. Consider DDT, Dioxins, PBCs, and DES. All are genotoxic, damage mitochondria and have been linked to endometriosis. Linkages to heavy menstrual bleeding are less well known, due to a complete lack of research. However, if we consider fibroids are one the most common causes of heavy menstrual bleeding, rodent research shows clear connections between long term, low level, food exposures to glyphosate, Bt toxin, and adjuvants, the chemical cocktail found in Roundup and used on genetically modified crops, to fibroid tumor growth. I suspect the accumulation of these and other toxins are keys to understanding the cell level hypoxia associated with heavy menstrual bleeding. The fibroid, like the endometriotic implant, may represent a mechanism to sequester toxicants, or in the case of heritable damage, remediate a flaw in bioenergetics with the resulting hypoxia a side-effect that then initiates its own survival cascades – the hypoxic spiral.

Hypoxic spirals are quite easy to initiate but somewhat difficult to stop, especially when resource availability is limited because of genetic or environmental liabilities. Consider the self-perpetuating cascades in iron deficiency or anemia, common in women. Anemia induces cell level hypoxia, which induces heavy bleeding. The heavy bleeding then induces or maintains the anemia. Similarly, Lupron, a medication used for both endometriosis and fibroids causes cell level hypoxia directly by damaging the mitochondria and reducing their metabolic flexibility. Hormonal contraceptives do as well. Indeed, one could argue that since all medications and vaccines damage the mitochondria by some mechanism or another, the ability to consume oxygen is necessarily impaired by modern therapeutics for all who use these chemicals. Reproductive ailments may simply be one set of manifestations among many. This begs the question, however, if cellular hypoxia can be induced so easily, in virtually anyone, why is it that some women develop endometriosis and/or heavy menstrual bleeding and others do not. In other words, why aren’t all women plagued with these disease processes? Increasingly, they are.

Damage to female reproductive function, colloquially referred to as ‘period problems’, has become almost commonplace in modern cultures affecting some 80% of the female population. Whether the issues present as endometriosis, adenomyosis, PCOS, fibroids, heavy bleeding or other menstrual or reproductive disease processes, may not matter. The nexus of each may be indicative of cell level hypoxia with the different phenotypes contingent on the individual’s cocktail of genetic, epigenetic, and environmental exposures and resources.

Treatment Possibilities

If hypoxia lay at the root of these disease processes, to the extent that the hypoxia can be resolved affords new treatment opportunities; ones that not only tackle root causes, rather than symptoms, but may also affect the totality of the individual’s health. Hypoxia, barring obstruction, is a metabolic disturbance. Whether the origins are genetic, epigenetic or environmental, metabolism resides in the mitochondria. If we support the mitochondria, provide the mitochondria with the resources, the fuel to perform the tasks they are proscribed to perform, rather than continually damaging or blocking innate signaling pathways needed for cell survival, we may just be able to, if not eliminate these disease processes, at least manage them and improve quality of life. I think this is worth looking into, don’t you?

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

Graphic credits: Tony Grist (Photographer’s own files) [CC0], via Wikimedia Commons

This article was originally published on May 9, 2017. 

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Lupron Induced Osteoporosis?

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Women who suffer with endometriosis do not have many options for treatment. As a result, many women try Lupron because they are desperate to be pain and symptom free. I was one of these women. In 2011 and 2013, I tried Lupron for a total of three doses and wish I knew then what I know now.

In 2010, I was diagnosed with endometriosis laparoscopically. After that, I tried everything from many different types of birth controls and pain medications to depression medications that can also be used to treat pain. Nothing worked. My doctor at the time suggested Lupron to me and I was desperate. I felt like I had already put my life on hold long enough because of this disease and just wanted to be out of pain. However, now I feel like I am suffering the consequences and it didn’t even get rid of my pain.

In 2015, I was diagnosed with osteoporosis. Prior to this, I had never had a bone scan done, not even before being administered Lupron. In 2009, I was diagnosed with Vitamin D deficiency and have been taking a supplement ever since. Three months before being diagnosed with osteoporosis, I stress fractured my knee and was told at my age, it should not have happened. In 2014, I had a hysterectomy because of endometriosis; I couldn’t take the pain anymore and had disease on both ovaries.

Before this, I had never had bone problems or been told that I could. I blame Lupron and strongly believe using it as a treatment for endometriosis led to me having osteoporosis. At 27 years old, I am still trying to work with doctors to determine if there are any treatments I can do because people my age having osteoporosis is rare. Many medications women use for osteoporosis could negatively impact my bones even more because of my age. If I don’t use any treatment, I could suffer from even more fractures or bone breaks the older I get. Right now, my average T-score for my left hip is -3.6 and was -3.3 when I was first diagnosed. I have no idea when my bones became so brittle. In my case, I wish I would have never tried Lupron as now I know this is one of the many side effects of this terrible treatment for endometriosis and something I will have to deal with for the rest of my life.

There are not studies done on medications for osteoporosis in my age group because there are not enough people with the disease to study. The medications my current doctor wants me to try would be a daily injection I would give myself in the abdomen for two years. They are known to possibly cause osteosarcoma, a bone cancer. Based on my history, I don’t like my odds. At this time, I don’t know how I will try to treat osteoporosis. I am planning on looking into natural ways of treating the disease and see how that goes.

As a result from my knee injury two years ago, I had to have an arthroscopic surgery. My doctor repaired my torn meniscus and removed scar tissue. It is taking me longer to heal than I anticipated and I wonder if it is because I have osteoporosis.

If doctors use Lupron for patients, they should be required to give these patients bone scans before their first dose and do follow ups yearly. It is a known fact that Lupron should not be administered in more than 12 doses over a patient’s LIFETIME. I wonder why this is?

I hope my story helps someone make a decision that is best for their body and raise awareness about Lupron. I am not a doctor, nor do I claim to be, but I am a patient that continues to live with the outcomes of having endometriosis.

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

Share Your Story

If you have experience with Lupron or other GnRH altering drugs, please share your story.

Image credit: Laboratoires Servier, CC BY-SA 3.0, via Wikimedia Commons.

This article was published originally on December 13, 2017. 

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Shattering the Mirror: Becoming More Than the Reflection of a Disease

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While writing a letter about myself to an online website recently, I found myself shocked and very much amused by the telling way I accidentally introduced myself. “Hello,” I began my letter, “my name is endometriosis and I am 29 years old.”

“Endometriosis?!?” I giggled as I re-read what I mistakenly wrote, I had introduced myself as endometriosis?? Could there be a more obvious way of telling the world that endo defines me?  I suppose not. But who really needs a Freudian slip to guess that one?  Anyone with even a bit of insight could figure out the truth ten minutes after meeting me! And don’t you try to hide it – I’m sure it’s true for you too. Endometriosis consumes and defines the lives of all those who suffer from it.

But is that really true? Does endometriosis really have to infiltrate every part of our lives? Does it have to be the focal point of everything we do, or be the root of everything we feel about ourselves? My initial answer is an emphatic yes; there is no possible way to view our lives beyond the scope of endometriosis. But as I sit to muse about it longer, I begin to see another side.

You see, it’s not necessarily about seeing ourselves as something significant other than the endometriosis; it’s about viewing ourselves as significant despite the endometriosis.

I have been to many support groups for women with endometriosis. Each time I go I am amazed and inspired by the inner strength and beauty of these women. It is truly uplifting to sit and listen to what each of them has to say. To watch as one woman painfully and awkwardly attempts to sit down comfortably on a chair all the while saying something like, “But today is a great day, I only had to take two narcotic pills!!” Or to see another woman comfort a fellow endo-sister by genuinely telling her how strong and beautiful she is or how amazingly she handled a certain situation. I have firsthand experience of being comforted by another woman who was suffering with excruciating pain at the very moment that she held me in her arms to ease my pain. Time and time again I have seen the strength of women who could have legitimately decided to be selfish and angry but, instead, made the choice to be giving and kind.

So next time we look in the mirror and see a pathetic woman controlled by her endometriosis, let’s take a second look. We need to allow ourselves to see what we have become regardless of the fact that we have a terrible disease. Let’s look past the silhouette of a woman hunched over in agony and instead see the proud form of a strong, defiant woman whose illness will not define her; a woman who is powerful, kind, giving and beautiful whether or not she suffers. We are so much more than just a reflection of this disease.

About the author: RC is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. RC is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

Share Your Story

If you suffer from endometriosis, please share your story. Send us a note here for more details.

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

Image created using Canva AI.

This post was originally published in November of 2013. 

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Embracing Resilience: A Journey Through Endometriosis and Infertility

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endometriosis, infertility

Last year I had the pleasure of interviewing Alyssa Chavez about her journey through the challenges of endometriosis and infertility. In this interview, she cries as she recounts the pain of losing her pregnancy and the difficulties of trying to conceive. In fact, both of cry as she discusses miscarriage and her repeated attempts to conceive and carry a child.

In her compelling story, she opens up about her path to an endometriosis diagnosis, the emotional trials of infertility and IVF, the pivotal role of her loving husband, the decision to pursue excision surgery for endo, and her current hopes of conceiving naturally. Alyssa’s mission now revolves around supporting and empowering women facing similar challenges, a testament to the strength that can be harnessed when one woman navigates her own personal adversity and is willing to share it with the world.

What Is Endometriosis

Endometriosis is a condition characterized by the presence of endometrial-like tissue that grows outside the uterus. As one might imagine, this causes excruciating pain. It can take a years for a diagnosis, and once diagnosed, there are very treatments available and even fewer experts to guide these treatments. Among the more successful treatments, is something called excision surgery, where the aberrant tissue is surgically excised laparoscopically.

In addition to the pain and suffering women with endometriosis experience, fertility can be challenging. According to the Center for Endometriosis Care:

…stages I and II had a 60% chance of conceiving without surgical treatment; those with stage III had a 15-20% chance of conceiving without surgical treatment and those with stage IV did not conceive in that study.

Many women with endometriosis are simply unable to conceive or carry a child naturally. Some require assistance with things like IVF, while others may require surgical excision of the aberrant tissue before conception and pregnancy are possible. Again, according to the Center for Endometriosis Care:

Other studies have also found that conception rates increase following surgical treatment of endometriosis. For those with stage I-II, the chances of conceiving after excision is between 80-85%, almost the same rate as if you did not have endometriosis. Those with stage III will have a 70-75% chance of conceiving and those with stage IV is between 50-60%.

Alyssa, required both.

A Painful Reality: Living With Endometriosis

Alyssa’s journey began in her late teens when she was experiencing severe pain during her menstrual cycles. Despite these excruciating symptoms that caused her to lose days every month due to pain, she initially encountered disbelief and was often told that her pain was “normal.” This experience is all too familiar to many women living with endometriosis.

Her relentless pursuit of a diagnosis and solution led her through countless doctor’s visits and interventions including cycle suppression via hormonal birth control. When she and her partner began pursuing pregnancy and she discontinued her hormonal birth control, her pain and digestive difficulties spiraled out of control. After years of negative pregnancy tests, IVF and  a miscarriage, it became clear that she would need to tackle to the endometriosis surgically and undergo intense personal work to heal herself through nutrition before pregnancy would be possible.

Listening to Intuition: The Decision for Surgery

One of the hardest moments in Alyssa’s journey was her decision to undergo excision surgery to address her endometriosis. This decision was not made lightly, as her initial fertility doctor and another specialist both recommended against it. Their primary focus was fertility rather than the endometriosis itself. But after a miscarriage, Alyssa knew in her gut that something had to be done. She went against the advice of her medical team, and even defied her own logic of finding a natural cure, all based on her gut feeling that surgery was the correct path for her.

The pain (emotional and physical) and intuition led her to consult with an excision specialist who also considered her fertility goals. Her surgery ended up being extensive, with endometriosis found throughout her abdomen and pelvis, as well as adhesions binding her pelvic organs together. The procedure was longer and more involved than anyone had expected but has given her the relief that she desperately needed.

The Crucial Role of a Supportive Partner

Throughout her challenging journey, Alyssa was fortunate to find unwavering support in her husband. He proved to be the anchor in her life, offering love and encouragement every step of the way. Their shared experience of fertility struggles and the challenges of endometriosis not only deepened their bond but demonstrated how adversity can bring a couple together rather than tear them apart, as is so often the case.

Alyssa acknowledged in this interview that many couples experiencing fertility issues encounter additional strain on their relationship, as she and her husband also did. However, in their case, these challenges brought them closer together. The couple’s strength and determination allowed them to navigate the complexities of IVF and endometriosis with resilience.

Hope for the Future: Natural Conception

With her endometriosis surgically addressed and now armed with nutritional knowledge to heal her body systemically, Alyssa now looks to the future with renewed hope. The surgery, which removed binding adhesions and relieved her debilitating monthly pain, gives her hope that she now has an environment conducive to natural conception.  IVF was physically and emotionally taxing as well as expensive, so she continues to heal herself with nutrition and supplements and now holds optimism for the future and a natural pregnancy.

Supporting Others on Their Journey

Alyssa’s journey transformed her into a passionate advocate for women facing similar challenges. She now offers one-on-one coaching to guide women through the complexities of healing endometriosis, hormones, and fertility from the inside out, with a focus on nutrition. Her holistic approach seeks to address the systemic causes, considers individualized needs, and aims to make wellness practices fit into everyday life.

By sharing her journey and empowering others to seek help, she hopes to break the silence and stigma surrounding women’s health issues. She has a thriving one-on-one coaching business as well as her podcast, The Endo Belly Girl Podcast.

Alyssa’s journey through endometriosis and fertility challenges stands as a bright light of hope and resilience for other women who are on the same path. The fact that her journey is not yet over makes her story so much more compelling and relatable!  Her willingness to share her experiences is an invaluable contribution to the broader conversation surrounding women’s health and I am so grateful that she took took the time to speak with me so transparently. I invite you to listen in on this interview to learn more, and to be assured that you are not alone in your struggles with endometriosis, fertility, and systemic healing.

Endo and Infertility with Nutritional Coach Alyssa Chavez

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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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Thoracic Endometriosis

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thoracic endometriosis

Endometriosis is a common disease, affecting up to 10% of women. It is characterized by the presence of tissue similar to the lining of the uterus (the endometrium) forming abnormal growths elsewhere in the body. Usually endometriosis growths/lesions are found in the pelvis, most commonly in the cul-de-sac (between the rectum and the back wall of the uterus), the ligaments of the pelvis, the bladder, the ovaries and tubes, and the sigmoid colon.

Endometriosis lesions can more rarely be found outside of the pelvis, and the most common type of extrapelvic endometriosis is thoracic endometriosis. Although thoracic endometriosis is relatively rare, there has been an increase in diagnosis in recent years, probably because of increased awareness among medical professionals that endometriosis can occur outside of the pelvis. Thoracic endometriosis is often found in conjunction with severe pelvic endometriosis.

The average onset of symptoms of thoracic endometriosis is 35 years old, much later than for pelvic endometriosis, where symptoms often begin in adolescence. It is not clear why this is the case. In addition, the majority of thoracic endometriosis is right-sided, with a smaller number of cases being left-sided or bilateral.

Symptoms and Clinical Presentation

The most common symptom of thoracic endometriosis is catamenial chest pain, which is chest pain occurring right before or during menstruation. In one study, 80% of women with thoracic endometriosis had catamenial chest pain. In another study, 90% of women had chest pain, 30% had shortness of breath, and 7% coughed up blood. These symptoms occurred more often during menstruation, but were not necessarily limited to menstruation. In 40% of women, chest pain was the only symptom of thoracic endometriosis.

The four main clinical entities associated with thoracic endometriosis are catamenial pneumothorax, catamenial hemothorax, catamenial hemoptysis, and lung nodules. Of these, catamenial pneumothorax has been the most researched. This is when the lung collapses during menstruation. It is considered to be catamenial when the collapse occurs during the window of 24 hours prior to the onset of menstruation to 72 hours after onset. The majority of catamenial pneumothorax is caused by thoracic endometriosis; however, not all pneumothorax associated with endometriosis is catamenial. In one study of 150 thoracic endometriosis patients, 37% of the pneumothoraces were catamenial, and 63% were non-catamenial. Pneumothorax typically causes chest pain and shortness of breath.

Catamenial hemothorax is bleeding between the chest wall and the lung that occurs during menstruation. This is a rare cause of pleural effusion (fluid around the lung), and like pneumothorax, usually causes chest pain and shortness of breath. Catamenial hemoptysis is coughing up blood during menstruation, and is usually associated with chest pain and shortness of breath. Catamenial hemothorax and catamenial hemoptysis occur in thoracic endometriosis less frequently than catamenial pneumothorax. Pulmonary nodules are one of the least frequent manifestations of thoracic endometriosis, and are masses in the lung that can be mistaken for malignancy. They can be asymptomatic, or sometimes cause coughing up blood.

In most if not all cases of thoracic endometriosis, lesions are also found on the diaphragm. In the majority of women, diaphragmatic endometriosis penetrates through the diaphragm. However, in a small number of women, the endometriosis lesions are found only on the visceral (abdominal/pelvic) side of the diaphragm, or only on the pleural (thoracic/lung) side. Not all women with diaphragmatic endometriosis will also have thoracic endometriosis. The symptoms of endometriosis on the diaphragm are similar to the symptoms of thoracic endometriosis, with chest pain during menstruation. This pain may radiate to the shoulder, neck or arm.

In rare cases, endometriosis on the pericardium has been reported (here, and here). The pericardium is the membrane that surrounds the heart. These women also had diaphragmatic endometriosis, and one of them had severe pelvic endometriosis, and the other had an endometrioma in her liver.

How Does Thoracic Endometriosis Develop?

A common theory about the development of endometriosis, known as Sampson’s theory, suggests that retrograde menstruation, menstrual blood flowing backwards (away from the uterus) through the Fallopian tubes towards the pelvic cavity, deposits fragments of endometrium into the pelvis, which can then implant and grow into lesions. This theory has many flaws, as discussed here. The existence of endometriosis outside of the pelvis is one of several facts about endometriosis that cannot be explained by Sampson’s theory.

So how does endometriosis outside of the pelvis develop? There are three main theories, and it may be through one or a combination of these that endometriosis develops in the thorax. The fact that thoracic endometriosis develops later than pelvic endometriosis may suggest that there is something fundamentally different about the way it develops. The migration theory suggests that endometriosis moves through the peritoneum (the lining of the pelvis) to the diaphragm, and from there, can move into the thorax through small holes in the diaphragm. The embolization theory suggests that endometriosis can be transplanted to the thorax from the pelvis through the lymph circulation, or the blood. Lastly, the metaplasia theory suggests that certain cell types can be transformed or changed into endometriosis. Clearly, more research is needed to delineate how thoracic endometriosis develops, and even how pelvic endometriosis develops, as this is not fully understood either.

Diagnosis

The definitive diagnosis of thoracic endometriosis, like all endometriosis, is through biopsy of endometriosis lesions/growths that have been removed surgically. Video-assisted thoracoscopic surgery can be used to visualize and remove endometriosis growths in the thorax. This type of surgery is similar to pelvic laparoscopy, where a small video camera scope allows the visualization of the surgical area, and instruments are inserted through small separate incisions. However, without surgery, a tentative diagnosis can be made through the clinical history and sometimes imaging results. In a woman with pelvic endometriosis, thoracic endometriosis may be suspected if catamenial chest pain is present, or any of the other clinical entities described above. Chest x-rays can show pneumothorax, pleural effusions, or lung nodules. CT scans may show certain findings characteristic of thoracic endometriosis, but sometimes CT scans are normal when a woman is not menstruating. MRI can also be helpful.

Treatment

Hormone therapy such as birth control pills, depo-provera, and Lupron are associated with greater than 50% recurrence of symptoms within six months after treatment was stopped. Video-assisted thoracoscopic surgery has been shown to be a safe option for treatment of thoracic endometriosis, and it can be combined with pelvic laparoscopy in the same surgery if pelvic endometriosis also needs to be treated. As with all surgery to excise endometriosis, the goal is to locate all of the lesions and remove them completely, in order to minimize recurrence. Most studies of surgical treatment of thoracic endometriosis have a fairly short followup, typically median followup of 18 months, and the number of patients in the studies is usually a small number, so it is difficult to draw robust conclusions about the long-term effectiveness of surgery. In one study, all patients had improvements in symptoms after surgery, but two out of 25 had recurrence at nine and twelve months respectively. Overall, though, surgical excision of thoracic endometriosis appears to be effective in the majority of cases.

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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 July 16, 2016. 

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Healing From Lupron and Endometriosis With Thiamine

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Lupron, endometriosis, thiamine

I was diagnosed with stage 4 endometriosis in 1996. In 2017, I was ready for a hysterectomy. I had two children and was finished with childbirth. I was having a lot of pain on my left side where my ovary was located. My Veterans Administration GYN refused to do a hysterectomy without first giving me Lupron shots assuming that my pain was due to the endometriosis. I was trying to hold down a very demanding government job and missing a lot of work from the pain. I had two laparoscopic surgeries in 1996 and 2001, respectively. Both were to excise the endometriosis. At the time, I was required to take Lupron in order to have a hysterectomy, I was 46 years old. I was denied a hysterectomy after my son was born in 2000 because I was considered too young at 30 years old to have a hysterectomy.

Endometriosis in the Colon and Lupron

After the injections of Lupron, a colonoscopy confirmed a diverticula pocket in that spot that was painful and others on my large intestine. The laparoscopy and excision in 1996 confirmed that my endometriosis extended to my large intestine. The colonoscopy found that I have so many pockets of diverticulosis, a resection surgery was not possible. Basically, if I were to become septic due to an endometriosis/diverticulosis flare, they would need to remove all of my large intestine. My options were very limited. My GYN wouldn’t perform a hysterectomy and laparoscopy under the assumption that the pain I was having was due to endometriosis. He convinced me to start the shots to see if they would help the pain because he assumed the pain was due to endo. I didn’t research the Lupron injections much prior to receiving them. I fully trusted my GYN. He mentioned hot flashes and suppression of symptoms with estradiol.

Immediately I noticed a difference. I don’t take prescription drugs of any kind unless I am really sick. I had nothing for any preexisting conditions. I could not tolerate the injections and function at work. I had severe hot flashes every few seconds 24/7 for three months even with add back estradiol. Worse, the estradiol made my migraines flare and so I was a hot mess. After stopping estradiol, my migraines continued to flare and still do without supplementation. I was also having diverticulosis flares every month sometimes twice a month. I had terrible gas and severe IBS symptoms. My work leave, FMLA and advanced sick leave were dwindling from all the visits to the various doctors. Within three months of my last Lupron injection, I was forced to retire or be fired for not being able to work. I never fully recovered from the Lupron.

Finally, a Hysterectomy

My GYN finally agreed to the hysterectomy in 2018 where they found my left ovary and left fallopian tube in one mass of adhesion scarring with my large intestine. The GYN removed the left polycystic ovary, left and right fallopian tubes along with my uterus, which had fibroids, and cervix leaving me with just my right ovary. Prior to the hysterectomy, I began noticing some numbness and cramping or burning in my feet at work that was much worse at night. I had the same kind of cramping and burning in my lower back too. I would later learn that these are symptoms of thiamine deficiency. Trying to keep it together at work with all of this was a nightmare.

Around this time, I also began having severe nausea and pain in my stomach. The GI doctors did an upper GI scope to confirm duodenal ulcers. The digestive issues, especially the diverticulosis should disqualify anyone from having Lupron as Lupron causes major digestive upset according to the FDA fact sheet. My digestive tract was inflamed from mouth to anus post Lupron. I had an inflamed esophagus and ulcers, diverticulosis flares, IBS with constipation and diarrhea and hemorrhoids that I couldn’t heal with meds. The low FODMAP diet helped though.

No More Pharmaceuticals

In 2019, I finally stopped taking all pharmaceuticals. No pharmaceutical made me feel better. Every medication I took for GI issues and neuropathy made me worse. I only took one for one or two weeks at a time to log all my side effects from each so I could have them added to my growing list of allergic reactions. I did have some sensitivity issues with prescription drugs prior to Lupron, just not as bad. I have the MC1R redhead gene. Redheads are more sensitive to pharmaceuticals and have more adverse reactions. I struggle with topical solutions as well. I couldn’t use estradiol patches because I’m allergic to the adhesive. Thankfully, my primary care physician also has endometriosis and suggested herbal supplements and remedies. All of this ,surprisingly, is from the veteran’s hospital. I was ordered by her to stop working. This was a final attempt to heal my ulcers, as they would eventually kill me if I could not find relief.

How I Healed Myself With Thiamine and Diet

I decided to try high dose thiamine after researching it via Drs. Lonsdale and Marrs and Elliot Overton. I started with 100mg daily for 6 months. Then 500mg for 3 months and currently 1000mg (500mg 2x daily). The thiamine works as well as the acupuncture with EMS. I also take Alpha Lipoic Acid and Dandelion root daily. The increases in thiamine are proving to be a significant factor in recovery. If I miss one day of supplements I’m sick for several days so I’m convinced that it is working.

To help myself heal, I no longer work a 9 to 5 job. I follow a low FODMAP diet with modification for diverticulosis and supplement with elderberry or dandelion for inflammation and immunity, turmeric, prebiotic + probiotics, magnesium for bone loss, palpations, anxiety, alpha lipoic acid for neuropathy, high dose thiamine for neuropathy, fatigue anxiety and brain fog, b vitamins and D3+K2 for b1 uptake regulation and delta 8 CBD for fibromyalgia pain and fatigue. I have regular chiropractor adjustments of my neck and lower back. Acupuncture and light therapy on my feet helped with the burning and cramping.

Where I Am Now

Currently, I have no endometriosis pain, only some lingering PMDD. I have no ovarian cysts and the migraines are not as frequent. Now only a couple a month versus weekly. I still have some burning and cramping in my legs and feet, but it is tolerable. Before thiamine, I was bedridden. The back and neck pain I had previously has improved with thiamine along with physical therapy/yoga and regular chiropractic care. I no longer experience diverticulosis flares with the new diet and supplements for inflammation like dandelion root, turmeric, and elderberry. I switch out the dandelion and elderberry because they work about the same. Depends on what is on sale.

I am able to stand for longer periods of time. My anxiety is significantly reduced, my palpations are gone, I can remember things, and my ADHD flare ups are minimal. In 2022, I only had two mild diverticulosis flares. Prior to the diet changes and supplements, I was having them once a month. I went from being bedridden completely to cooking (I still need to sit some), cleaning with short breaks, gardening with a sit on garden cart, and walking about a half mile every few days. I still have numbness in both feet. I am hopeful that lowering my A1C will resolve this. It may be permanent. Only time will tell. I’m going to the VA this week for a checkup and requesting more PT to see if it will help. They did an EMP on both legs with normal results. That was pretty painful but I felt nothing in my 3 little toes on both feet. Overall, I am doing much better with the higher dose thiamine and have much more energy.

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

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Lessons Learned About Recovering From Thiamine Deficiency

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lessons learned with thiamine deficiency

It has been a year since I started taking high dose vitamin B1 (thiamine) for a variety of chronic symptoms including: Lyme disease, CFS/ME, endometriosis, histamine intolerance and other food intolerances, SIBO, chronic complicated migraine with aura, chronic insomnia, chronic severe light and exercise intolerance, to name a few. By traditional medicine, each of these conditions was considered unique and thus treated individually. I have learned that they are not separate conditions, but simply different manifestations of disturbed mitochondrial metabolism. In my case, all of this was related to deficiencies in thiamine and other vitamins and minerals. My recovery has been difficult and I have made many mistakes along the way, but hopefully, I learned from them. I am publishing my story here so that you may also learn from my experience. You can read my original story here.

Lesson 1: Magnesium Formulation Is Important

Magnesium is required to change thiamine from its free form to the active form called thiamine pyrophosphate (TPP). Without sufficient magnesium, supplemental or consumed thiamine remains inactive and basically useless. This means that magnesium deficiency can cause a functional thiamine deficiency. I understood this, but what I did not understand, was that there are many different formulations of magnesium supplement, each with pros and cons relative to the individual’s specific needs. I thought they were all interchangeable.

For me, and for individuals with heart related symptoms, magnesium taurate is preferred. One of my first mistakes I made was to ignore Dr. Lonsdale’s comments in which he talked about the importance of taking magnesium taurate. I understood it as meaning that magnesium was important and did not understand that it was a special form of magnesium with cardio protective effects due to the taurine content.

When I initially took magnesium taurate, I noticed an increase in my wellbeing, especially in the fatigue and headache that I would develop after walking around the house or being intellectually active, but I didn’t know that it was the taurine component that was responsible for that change. For a while, I stopped taking magnesium taurate and returned to using other forms of magnesium (magnesium citrate or malate). They did not help as much as the taurate. During this time, I also realized that I do not tolerate magnesium glycinate or bisglycinate. If I take that form, I have a terrible headache on the right side of my head. The glycine activates glutamate via NMDA receptors in the brain causing some excitatory activity. This may be why I could not tolerate it. Others do not have a problem with magnesium glycinate.

Over the last two weeks, I was that taking magnesium malate and taurine separately.  I wanted to avoid spending a lot of money on magnesium taurate, so I tried to buy a cheap form of magnesium – magnesium malate – and combine it with taurine which is inexpensive when purchased in bulk. This did not provide the same benefits as magnesium taurate. I experienced chest pressure and pain and my resting pulse went back to being higher than 65-70 BPM. Once I began taking magnesium taurate again, my heart rate and chest pain/pressure disappeared.

So the lesson here, is that different formulations of magnesium work for different people. It is important to research which form may work better for you and your set of symptoms and not to assume they are interchangeable.

Lessons 2-3: TTFD Degrades with Heat and Light and Interruptions to Thiamine Repletion Cause Setbacks

One other important thing I realized was that thiamine is destroyed by UV light. This meant that in August, when I put my TTFD powder (a form of synthetic thiamine that crosses cell barriers more easily) in a transparent container on the kitchen table, and left it there all day long while sunlight shone directly on it through the big windows in my kitchen, it was being destroyed every day. I experienced a big crash during that month, especially since I was taking all the other vitamins and minerals that were serving as co-factors. I could not explain it and was thinking that even this therapy was losing its effect, that my recovery was over, and that I could no longer hope for a better quality of life.

However, in September, I received my new order of TTFD powder. The very day I received it, I took my regular dosage from this new batch. The difference was incredible in terms of my symptoms. It was night and day. The effects were truly remarkable and unmistakable. I’m very careful now with my TTFD powder and make sure it stays in an opaque container.

Lesson 4: Treating My Carnitine Deficiency. Once Again Formulation Matters.

Another thing that I had not been able to fix was my carnitine deficiency. This was discovered by the neurologist who suspected that I was dealing with a FAOD (fatty acid oxidation disorder) or a mitochondrial disease back in February. Free carnitine levels in blood are supposed to be between 17 and 49, while mine was 6. I tried taking various forms of carnitine (L-carnitine, acetyl-L-carnitine, l-carnitine tartrate, Optimized Carnitine, propionyl-L-carnitine) but they all had a laxative effect which was aggravating my symptoms. I asked my neurologist if there were injections with carnitine that could replace the pills, but was left to figure it out for myself. And I did.

Through much research, I found a form that worked for me. It is called Propionyl-L-Carnitine. This form of carnitine is a known agent that protects against ischemia  – quote from the linked study:

Free CoA and propionyl-CoA cannot enter or leave mitochondria, but propionyl groups are transferred between separate CoA pools by prior conversion to propionyl-L-carnitine. This reaction requires carnitine and carnitine acetyl transferase, an enzyme abundant in heart tissue. Propionyl-L-carnitine traverses both mitochondrial and cell membranes. Within the cell, this mobility helps to maintain the mitochondrial acyl-CoA/CoA ratio. When this ratio is increased, as in carnitine deficiency states, deleterious consequences ensue, which include deficient metabolism of fatty acids and urea synthesis.

This form of carnitine has made a huge difference in my health, especially with one particular symptom – the wet cough that had accompanied my walking around the house since April 2021.

More Energy and Exercise Tolerance with the Correct Supplements

In October, I began taking magnesium taurate and I also added higher doses of potassium to my regimen, just to see if I tolerated them. I had taken rather lower doses of potassium on and off since starting high dose TTFD. One of the things higher potassium solved, was the aftertaste (or after smell) that I used to get with 300 mg TTFD. I know most people dislike it, since it’s a sulphur smell, although I never disliked it.

After about two weeks on magnesium taurate and higher potassium intake with every dose of TTFD, I began propionyl-L-Carnitine HCL and Optimized Carnitine again. I noticed that they no longer had a laxative effect and I doubled my dose of propionyl-L-carnitine HCL so that I was taking about 600 mg three times a day, combined with one capsule of Optimized Carnitine.

After about a week, I noticed that I had more energy. I no longer needed to eat every three or four hours, I no longer had dyspnea or wet cough during the day when I was walking around the house. All those symptoms speak of cardiomyopathy and were resolving with the supplements. I still need to avoid sleeping on my left side and instead sleep on an incline on my back to be able to sleep through the night, but it my sleep is so much better now. My headache, something that has tortured me since I attempted intermittent fasting in 2018, is now gone. This makes me think that the right-sided headache is one of the symptoms of my heart not being able to do its job properly.

One of the things that helps the most with mitochondrial biogenesis is exercise and it is highly recommended for people with mitochondrial disease. However, in many studies it is noted that if cardiomyopathy is present, then this therapeutic cannot really be used. This is important because many people recovered and improved their exercise intolerance, but still develop symptoms after too much physical effort and wonder what they could further do to improve their symptoms.

After finding the right supplements to correct my deficiencies, I’m able to walk around the house without it aggravating or triggering my symptoms. Prior to this, I was largely bedridden and would have flares every time I attempted to do anything. I have a device that measures how many steps I take and it shows that I walk at least 1000 steps per day when I do nothing and spend 95% of the day in bed.
Now I’m able to go out and walk around my apartment building, which is about 150 meters and do not suffer any consequence. I tried walking more than that and if I do, my main symptoms come back (insomnia, heart symptoms and headache). It is progress, but I still have a long way to go.

I am also capable of learning a little bit of German every day. While my memory is still very poor, at least what I learn “stays” in my brain and the knowledge/understanding of the language accumulates slowly day by day. Intellectual activity no longer triggers the terrible, hours-long headache it once did.

Improved Sleep: Correcting the “Histamine Bucket”, Insomnia, and Heart Symptoms

Since becoming ill, I have had insomnia, likely due to my heart struggling to maintain a constant rate and rhythm. One of the very first things I heard that could explain my constant awakenings especially around 2-3am in the morning is the theory of the “histamine bucket”. This theory argues that around 2-3 am, there is some shift in our body’s physiology and histamine is released. Thus, if you already have a lot of histamines in your body, due to mast cell activation or low DAO, your histamine bucket is full and it will make you wake up. While this is plausible, I do not believe it is sufficient to cause these early morning awakenings. It is not a cause in and of itself, but one of the many things that get dysregulated downstream after nutritional deficiencies are ignored for a period of time.

My chronic early morning insomnia began in 2015, when my thiamine levels dropped and the aggravated mitochondrial disease began to unfold. I remember waking up and I would feel my heart beating more strongly (though not pounding), sometimes I would hear a pulsatile “whoosh” sound in my ear. I would also feel weird sensations in my chest, though not pressure. During those months, I would experience on and off dyspnea while walking to my office. I didn’t think anything of it because I approach my health in the exact opposite manner people with real hypochondria do. I just thought it was a subjective “feeling”, thus not worthy of an inquiry into a possible objective cause for it.

The experience I had in the last few weeks with the supplements mentioned above makes me doubt that mast cell activation or histamine “bucket” overflow are the main causes of waking up constantly at 2 or 3 a.m. I believe it’s most likely connected with the impact histamines have on the heart – they are a known factor in developing heart failure and using antihistamines does help in preventing/postponing the onset of heart failure. This also explains why of all medications, antihistamines were the only ones that helped with a lot of my symptoms in 2016/2017.

When I started taking magnesium taurate, potassium in high enough doses and propionyl-L-carnitine, my heart symptoms improved and my sleep improved. Recently, I woke up at 3 a.m. and I immediately took a low dose of magnesium taurate and a little bit of potassium citrate. I fell asleep again in 15 minutes and in the morning I felt ok. In the past, when I would take something like L-theanine. It would force my body to go back to sleep immediately after 2 a.m., but I would feel much worse in the morning, more than if I just had insomnia.

Restoring Normal Heart Rate

One of the most important things has been reducing my resting pulse from 75-80 BPM to my normal, prior to 2016 resting pulse which used to be 60-65 BPM. I remember I used to complain about it and doctors or nurses just brushed me off. They would say that if it is under 90 BPM, then it is not a medical symptom of anything. I knew they were wrong, but how could I argue? Somehow these people in white coats think that heart failure or other cardiac diseases start out of the blue, when in fact these diseases represent years and years of ignored symptoms before the onset of the full-blown disease with typical manifestations is recognized.

Lessons Learned

Everything that helps my heart function better and recover faster improves all of my symptoms, no matter how much they may seem unrelated. This is what I observed about my own body and I encourage everyone to listen to their body and understand that all symptoms are related.

If one version of one supplement does not work, try another form and combine it with different forms and dosages of other supplements. By supplement, I understand all substances that are naturally found in food or produced by the body.

When I saw that simple forms of L-carnitine don’t have an observable effect, I simply started searching for better forms of carnitine and found propionyl-L-carnitine, which is the physiologically active form of carnitine. Why I looked for other forms of carnitine? Because I learned from experience that high dose vitamin B1, as thiamine HCL didn’t help, but that high dose Allithiamine (a formulation with TTFD) helped and still helps my body working again as it should.

I found taurine (again) by searching for supplements that improve heart failure symptoms. When I first heard about it while reading one of Dr. Lonsdale’s comments, I didn’t understand why it was important.

No one should ever quit trying to figure out their own matrix of symptoms. Begin with the vitamins and minerals, while at the same time addressing infections, limiting damaging diets, limiting exposure to toxic substances and so on. I firmly believe that all diseases with chronic fatigue involve some degree of mitochondrial dysfunction – inherited or acquired. The prototype documented, unquestionable illness that causes hundreds of symptoms, i.e. a multi-systemic illness, is inherited mitochondrial disease.

I know personally of two other people who were completely bedridden, suffering from constant light intolerance, having to live in my bed for two years with a sleeping mask all day and all night, unresponsive to any treatment or approach promoted by the online integrative medicine doctors and communities. I did not think I would ever be able to become house bound, not able to tolerate light, to think or cook for myself. The ability to no longer be bedridden and forced to live in total isolation in darkness and to be house bound is nothing short of a miracle. I owe that to thiamine.

Usually people who end up in that state for so long never recover because all known alternative treatments are exhausted and high dose thiamine for chronic illness is virtually unheard of. I will make sure to do everything in my power to change this, no matter the costs, because there’s just too much unnecessary suffering out there.

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This article was published originally on December 9, 2021. 

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