child abuse, endometriosis, thiamine deficiency

Early Abuse, Poor Nutrition, Endometriosis, and Thiamine Deficiency

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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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13 Comments

  1. Hi Eva,

    Reading your childhood and health struggles brought a tear to my eye but I’m glad your health has been improving. May it continue. Your mention of sleep apnea caught my eye with ttfd caught my eye. Can you pls share what brand of ttfd that helped and how much you’re currently on now?

    • Hi 🙂
      The apnea actually resolved on plain cheap B1 HCL, and came back while on TTFD.
      I know Dr Lonsdale was a very strong proponent of the ttfd kind specifically, but he also started all his experiments on plain old B1 hcl. There are a lot of people who actually don’t do well on ttfd, because of sulfur intolerance, (or maybe also because of the fillers in the capsules). Unfortunately, it took me almost 2 years of persistently trying ttfd thinking all my symptoms were merely paradox. I definitely do not do well on ttfd, and b1hcl is proving to be much more helpful. The apnea actually went away as soon as i began on a very low dose of only 1/64th of a teaspoon of powder 3x per day, which is roughly equivalent to 25 mg. (3x)
      I’ve had no adverse symptoms with the b1hcl, but felt awful on the allithiamine (ttfd cardiovascular formulas)
      I buy the b1hcl powder from bulk supplements dot com. It’s really inexpensive.
      I’m working up slowly as I am hypersensitive to supplements. I’m now at 1/16 ts (100mg) 3x per day for total of 300mg. I plan to work up to 1800 mg a day as this is the point where most studies show people with eds, fibromyalgia, and other pain or autoimmune syndromes feel relief.

  2. Is it unusual that you haven’t mentioned parasites as the cause? I too have suffered terribly with painful periods and various other mental health issues from a young age. My debilitating periods started aged 14 and now I find myself entering menopause. However, I had a diagnoses of fibroids during my pregnancy which caused them to increase in size, one of which is causing me daily pain and weakness now.

    I stumbled across Berkeleys website after quite some trial and errors re parasitic cleanes. I was desperately looking for something as I had had a severe wiggling sensation since childhood and had always pushed it away as there was no itch. Turned out I had tapeworm prob contacted from swallowing a flea as I had dogs in childhood. The relief of getting rid of the tapeworm was immense. But by now ,I had also developed an itch during adulthood which I think is pinworm as there are some sypmtoms of this too. As I started researching parasites, the possibilities are endless. They can live in every cavity especially flukes that are easily contracted. I also have endometriosis, that they say is absolutely caused by parasites moving about and dragging cells with them.

    I am on the Berkeleys parasitic cleanse again, this time for three months but my fibroid symptoms are severe today again which brings to me to your site which I’m so grateful for.

    I am considering a hysterectomy too but I am sure it is parasites that are causing my symptoms that I have not fully eradicated.

    You might want to research this and let me know how unget on with your research. I also take myrrh but I feel I need something more. Berkelys has helped tremendously but I’m not there yet.

    I too was undernourished as a child due to not liking my diet of watery chicken and cabbage. I thunk being undernourished allows parasites to take hold from.a young age and that’s why they are so difficult to irradicate.

    I also think my father carries toxoplasmosis as him 6 of his sibling have developed dementia and they grew up with a lot of cats. This parasite can be passed from Father to child altering genes and causing ocd. Something I have also struggled with.

    Good luck in your journey.

    • Thank you for reaching out 🙂

      One of the things I really love about this website is how people from all over the world are reaching out to each other to share ideas and give inspiration and hope.

      I did do a parasite cleanse with Ivermectin but did not find that it made any difference.

      Are there specific researchers that you would suggest I look up to look further into this idea? I would definitely like to follow up and look into your suggestion.

  3. Hi Eva I share some of your experiences with life and health and I’m sorry it’s been a rough ride. I too found Elliot Overton and after feeling convinced that B1 was the answer I quickly learned that it was not but it did help. I’ve recently been diagnosed with CIRS – chronic inflammatory response syndrome. Elliot Overton has a video about CIRS which is how I originally found out about it. The pieces of the puzzle are finally coming together. I highly recommend you look into it. All the best! Amber

    • Thank you Amber, I will definitely do so.

       I love that you reached out. There are so many puzzle pieces and false starts , aren’t there, for those of us who’ve been battling all our lives. It is frustrating and exhausting and disheartening.

      I’m also finding really interesting info from Chris Masterjohn (look up “your mthrfr is a riboflavin deficiency),  and also on a site called Phoenix Rising (for people with chronic fatigue, fibromyalgia, mast cell activation, anxiety, depression etc.) I’m following the postings of a Dr. Rich and a “fredd” 

      All these also are very convinced of the vital role of the B vitamins in chronic Health issues, but they focus more on riboflavin and proper methylation to overcome genetic mutations that disallow the proper use of the methyls such as B12 and folate.

      I’ve been doing the TTFDfor nearly four months with no improvement, but I am thinking maybe the only issue I’m having with the Lonsdale protocol is the recommendation for regular B complex, as I think my body cannot process the folic acid and the cheaper B12 and B6 versions.

       I think anyone who has experienced lifelong chronic illness likely has at least one genetic mutation (40% of the general population have the mthfr mutation; likely much higher in the chronically ill) so it is making sense for me to explore this issue as though I do have those genetic mutations whereby folic acid, cyanocobalimin, and pyroxine are destructive.

       I have just ordered all my B vitamins separately from bulk supplements, including the metabolically active forms of B6 (P5P), methylfolate, and B12 (methylcobalamin)

       So I’m sticking with the TTFD, but will approach the B complex differently. 

      I’m excited to look into the information you have shared. Again thank you so much and I wish you well on your journey. Will you Let me know how you are progressing?

      • Hi Eva,

        Thanks so much for your reply.
        Yes, this search for health has been (and still is) quite the experience. It is very frustrating, exhausting and disheartening AND expensive!! I have been looking for answers for a little over 30 years now and I’m really hoping this CIRS diagnosis and treatment will get me to a good place. So far so good. I’m seeing improvements so I feel hopeful.
        Interestingly, CIRS is a genetic mutation and I agree with you that anyone with chronic issues is looking at issues with genes. With CIRS a gene gets turned on when exposed to certain things like mold, a tick bite and other things as well. Apparently approximately 23% of the population has this gene that can turn on.
        Also, people with CIRS have trouble detoxing so this is why some people get worse when they try a detox protocol. This is why I would see naturopaths and functional medicine doctors who would try to detox things out of me and I would just get sicker and sicker and then they didn’t know what to do with me so we would just part ways and I’d be on the search again!

        I will look into the sites/people you mentioned. I’m always looking to learn more so thank you for sharing that info.

        Good luck with your continued search and I would love to hear your updates on your progress and I’m more than happy to share mine. It’s great to connect with others who have been through this hard journey as well.

  4. Thank you, Torill 🙂
    Vitamin C, unfortunately, is among the supplements that I’m not tolerating right now. I realize that this is probably also paradox, but it makes my histamine symptoms so much worse! I have tried sodium ascorbate, calcium/magnesium ascorbate , plain ascorbic acid, and fat soluble vitamin C as well, and I can’t even tolerate low doses. I imagine I’ll have to move further into the thiamine journey and slowly reintroduce one new supplement at a time. I do hope that as I heal I’m able to tolerate vitamin C. It’s high on my list!

    • Might want to read Toxic Superfoods by Sally Norton. I too am struggling from overconsumption of Oxalates only to find out that high dose Vitamin C (over 500mg) only worsens and increases levels of Oxalates in the body. It’s barely needed unless you consume lots of carbs as they both compete for entry into the cell. Now that I’m pretty much carnivore, I don’t ever concern myself with vitamin C and just consume a little lemon juice to help break up the Oxalates.

      I appreciate you sharing your story. I too had a rough childhood and I’m still trying to get my physical and more desperately, my mental health figured out. I’m about ready to give up as I feel like I’ve tried everything, can’t trust anything, and I’m too exhausted to keep searching and not smart or driven enough to figure it out right now. I hope you get to great health. Sounds like you deserve it and have a lot to offer the world.

      • Thank you, Troy
        I truly appreciate you taking the time and energy to send a message to me. I understand how much it costs to use your energy in this way when it has been so low for so long. Do try to start on Dr lonsdale’s protocol. I really feel like out of all the things I have researched over the years that this makes the most sense on all levels, especially for those of us who have had lifelong trauma. Thank you for reminding me about the vitamin C and oxalate phenomenon. I had read about that at one time, and like you say while researching so very many different protocols, it gets confusing and also discouraging when you respond so poorly to everything you’ve tried. I am going to put the vitamin C and everything else aside for a while and just focus on Dr lonsdale’s protocol without messing around with other things. I do really hope that this will be the key, and I hope it can be a key for you too. Blessings, lights, and hope to you

  5. You may want to try megadose vitamin C for constipation and histamine intolerance! Take to your bowel tolerance— a healthy adult experiencing no illness can usually tolerate 4,000-12,000 mg vitamin C per day. Someone who is ill can tolerate MUCH more. You’ll know you’ve reached the right dose when you start to have loose bowels (take a little less the next day).

    I recommend sodium ascorbate vs. ascorbic acid. It is non-irritating to the stomach.

    Glad you are on the path to healing.

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