((XTIAN1)) - about your DX of PRIONS / mad cow ---

Discussion in 'Fibromyalgia Main Forum' started by victoria, Dec 2, 2005.

  1. victoria

    victoria New Member

    That really blew me away reading that that is what you have been dx'd with!!!!

    If you don't mind my asking, where do you live? What made your doctor(s) decide to do that biopsy in the first place? What is the proposed treatment, if any? Can they tell how long you've had it, possibly?

    I am so sorry to hear that is what you have!!!

    From everything that I've read about it, that is going to be extremely rough to deal with.

    all my sympathy,
    [This Message was Edited on 12/02/2005]
  2. kch64

    kch64 New Member

    Who tested you? Wow. That's terrible. I'm very sorry.

  3. victoria

    victoria New Member

    again... hoping you see this...
  4. victoria

    victoria New Member

    up again...

  5. xtian1

    xtian1 New Member

    Thanks for everyone's support. I was diagnosed by a bone marrow biopsy that was done a few years back when no one knew what was going on and they suspected cancer.

    A pathologist re-examined the biopsy 6 mos ago and I was diagnosed with a prion disease. According to most Dr's it is fatal, but the Dr. I am working with has successfully treated it. Apparently it is more widespread than most are aware of.

    I am sorry I can't say much more as I don't want to become a news story.

    I wish you all well.
  6. rockyjs

    rockyjs Member

    There are several prion diseases that people can get, either acquired on inherited - it's a shame that we have only heard about mad cow.

    I'm so glad your doctor was able to treat it. There are some theories that anything that can displace copper in the brain will contribute toward the prions causing brain disease (like manganese). This is important for people to know, especially those who live in areas where there are high levels of manganese in their water.

    Thanks for sharing.

  7. lisagra

    lisagra New Member


    are you the one who also had lots of dental work done on top of the lyme dx.

    i am very curious about your dx and tx, since i am in a similar place right now.

    contemplating jaw surgery and on massive abx for lyme right now.

    please share as much as you can.

    thanks so much, lisa
  8. tansy

    tansy New Member

    A doctor I saw in the 80s recommended manganese to help with my spinal issues and pain; but it made some symptoms worse so I stopped taking it. Some LLMDs say manganese should be avoided.

    The mineral imbalances and various deficiencies often found in these DDs are often referred to as the consequence of them, not the cause. When we look at vit D and Mg it's clear modern diets, farming methods etc don't help.


    I am pleased to learn the prions were identified and you were treated. We should all understand why you don't want to elaborate further.

    As Jan pointed out prions are not just implicated in Mad Cow Disease. I live in the UK so am well aware of what this dreadful condition can do. There are many in the UK Dx with ME/CFS who have had marked or severe neurological symptoms, have been ill for decades, but they have not developed MCD.

    love, Tansy[This Message was Edited on 12/04/2005]
  9. Bambi

    Bambi New Member

    who was diagnosed as having mad cow disease was in terrible condition. Mentally she was just unaware of her surroundings. I am not saying it to make anyone afraid or feel worse, but I am hoping you had a misdiagnoses or something. I do not know ANYthing about the disease in humans except that news report, and will definitely look into it more. I know they did say it could take 20 years or more for the symtoms to show up, so by saying not long and drawn out I meant once it begins to manifest symptoms.

    I wouldn't advise anyone to do anything as far as eating beef but we haven't eaten if for several years now. That wouldn't matter though if we'd had a bad piece of meat before we stopped. I just think we may not be as well informed about discoveries of it in the cattle as we should be. I've seen tv news reports on "downed" cattle going into animal food and they always look dizzy, unable to stand,and many of the same things that they showed in Mad Cow cattle.

    Who knows WHY they are "downed"! I HOPE they are tested for whatever is wrong with them before being used for ANY food and don't think they should EVER be used for food of ANY kind!

    I do hope the diagnoses is wrong or that you NEVER develop the symptoms!
    I missed your post on it so don't know what you said about it. Good luck!! And best wishes!! Bambi
  10. rockyjs

    rockyjs Member

    Where we live in Colorado the elk and deer herds are very overcrowded and we have a high percentage of chronic wasting disease (another prion disease).

    Some researchers have theorized that when there is less food available they tend to eat pine needles which are very high in manganese and displace copper. They even found that putting out mineral licks containing copper greatly reduced the incidence of wasting disease.

    I think it's interesting that sheep get scrapies (their equivalent of mad cow) and sheep are very intolerant of copper.


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