Health record burning ceremony is a brewing!!!!

I just passed my 11 year anniversary of the date of this muscle disease. Weird date to recall. It was the last time I drove more than one mile. I drove to my father’s birthday which is 45 minutes away. On the way home I realized I could barely push the brake. When I got home I could not move. I was seen shortly after at the Mayo clinic. I had already had 5 years of symptoms and 5 years of being bumped from doctor to doctor not knowing what was wrong. When I finally got to the Mayo clinic we knew 2 things. I was only 34 and had severe osteoporosis and I had hyperparathyroidism and had no idea why. After a muscle biopsy I was diagnosed with Central Core Myopathy, a muscle disease. This muscle disease has cored out mitochondria and is accompanied by the RyR1 genetic mutation. They also discovered my copper level was to high and my ferritin level (Iron storage) was too low.

Fast forward 11 years. I have been in over 3 different genetic studies from the NIH to Canada to England and I do not have the RyR1 mutation that causes Central Core Myopathy.

I have continued to have elevated parathyroid which robs the body of calcium literally destroying my bones.

I have continued to have elevated copper with no answers as to why.

I was treated with an iron infusion for the low ferritin but uh oh they poisoned me accidentally and now I have too high ferritin which causes bone pain and a slew of other symptoms. So I did some blood letting only to become anemic but still have too high ferritin.

So copper and ferritin (heavy metals) too high.

Along the way I was diagnosed with Lyme disease and Multiple chemical sensitivities. My t-fighter cells are shot and so my immune system sucks letting all kinds of viruses to take hold.

4 years of treatment for lyme disease and I am no better than I was 4 years ago.

So I have spent the night looking through 11 years of medical records and come to a conclusion… We have spent over $100,000 in testing. Parathyroid scans, nuclear medicine scans, bone scans, MRI’s, lab after lab, Ct scans. Alternative medicine to every extreme you can imagine. 11 years of medical records I am looking through. A foot tall of paper.

Do you know what Im going to do??

Guess!!!!!

I’m going to burn it all!!!!!!!

No one has a fix. No one has an answer. It is not for lack of my Doctor trying. It is not for lack of me getting into medical studies all over the world.

These papers just show what I’ve been told for 16 years now. “ You are just a mystery.”

That mystery is going up in smoke tomorrow.

If I’m to be saved it will need to be without a drawer being taken up with medical records any longer.

I mean really. Look at this. Don’t YOU want to burn it!!!!!!!!!!

18 thoughts on “Health record burning ceremony is a brewing!!!!

  1. Sorry you are going through all of this.
    You say ‘I have tried everything alternative’. And please excuse me if you think this is inappropriate but did you try a classic homeopathic doctor? When I look up ‘Cuprum metallicum’ (which would be a homeopathic solution one would give in case of a Copper excess or lack) online I come to certain points which I found typical. The second hit already mentioned “Often there is outrage at having been exposed to injustice, cruelty or severe abuse. …. repressed suffering… emotional outbursts or through cramps, spasms and even convulsions.” “Cuprum espouses especially the ephemeral and elusive beauties” (Butterflies 🙂 )

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    • Oh yes. I had a homeopathic doctor. I also saw a holistic doctor. And osteopath. A chiropractor. A few different chinese medicine doctors. Reiki. Hands on prayer.
      It is not inappropriate at all for you to ask but yes I have tried cuprum metallicum BUT I have not in a number of years. I could revisit it.
      I will look it up and and give it a try.
      Thanks for the thought

      Liked by 1 person

      • I often get suggestions of massage or chiropractic which I did out of pocket for years. The last alternative med doc was a holistic doc who tried many modalities. My first apt was over $$500. I thin I saw him a handful of times doing other testing with hair samples and he tried some homeopathic too plus many other ways of healing from ionizing foot bat. Methyl b12 injections and the list goes on and on and on

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  2. And I pressed the wrong button combination so the above reply got sent without saying ‘please let me know if you are interested in this, I am not a doctor but I might be able to point you in a direction which might be helpful. I hope.
    Please do not burn your papers. Would it be an idea to put them in a box and give them to a friend to keep. Give them to you GP? As long as you did not try homeopathy or Ayurveda there is stil hope. (in my not so humble opinion). Could you possibly ritually burn something?
    Sending hugs.
    xx, Feeling

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  3. Υou could certainly see your expertise in tһe ɑrticle you write.
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  4. I hope you have some luck with your diagnosis and treatment. I understand your frustration, I am one of a handful of people diagnosed with a YARS2 mutation. When a disease is so rare there is rarely any resources put towards research or medicine. I have spent my entire life battling the medical system hoping there will be some breakthrough so that maybe I can live a comfortable life. So I understand how tough it can be. Stay strong, I hope you get some answers soon. Remember stay strong, the body depends on the mind. I will keep you in my prays. Take care X

    Liked by 1 person

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