Early Abuse, Poor Nutrition, Endometriosis, and 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.

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Image by Ulrike Mai from Pixabay.