The Call for Opposition: Challenging the P2P and IOM Processes
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Wondering what tests to get done.........

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Spinney Lainey, Feb 3, 2014.

  1. Spinney Lainey

    Spinney Lainey Senior Member

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    I've had CFS/ME for 8 years now and previously got much better after doing a course at The Optimum Health Clinic - it's main component was NLP. I also made some dietary changes, did yoga and started meditating. However, I had appendicitis almost two years and had have surgery to remove my appendix. That caused a major relapse from which I'm still struggling to get back to good health and have been a wheelchair on and off due to muscle weakness and fatigue. I still can't really walk very much and have a lot of fatigue. I also have a lot of brain fog and major sleep issues. One of my main issues I'm sure, is my immune system. I tend to have a constant stream of colds and seasonal viruses which hugely exacerbate my ME. In the past, I also worked with a lot of kids - teaching them the flute and so, in the run-up to getting ME - I was bombarded by germs!

    Based on this - I'd be interested to see what people feel should be my priorities in terms of getting tests done and whether anyone can suggest places where I can have these done. I live in London.

    Thanks
     
  2. camas

    camas Senior Member

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    Hi Spinney Lainey,

    If you are looking to rule out an MCAD (mast cell activation disorder) then you can find a list of the suggested tests on page 52 of the attached document. I'm not sure where you'd have these tests done in London.

    I'm sorry to hear about your severe muscle weakness. That has always been my most disabling symptom. It's still an issue for me, but has improved mostly since I've following a low histamine diet. The effect has been cumulative since I began last spring, and I can even do a little slow walk around my neighborhood every day now without PEM. That's a first in the 25 years I've been ill, so I guess there's always hope for improvement.

    I hope you find this document helpful.
     

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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  4. SOC

    SOC Senior Member

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    Just curious -- if NLP, diet, yoga, and meditation worked so well for you before, why haven't you gone that route again this time?
     
  5. Spinney Lainey

    Spinney Lainey Senior Member

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    Because I've been doing all of this and I'm still ill......
     
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  6. SOC

    SOC Senior Member

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    Oh, I see. I thought you said you were better and then had a relapse. Rotten when what worked before doesn't work anymore, isn't it? :bang-head:

    What is NLP?

    I second heaps' suggestion.
     
    Last edited: Feb 4, 2014
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  7. SickOfSickness

    SickOfSickness Senior Member

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    What tests have you already had?
     
  8. Spinney Lainey

    Spinney Lainey Senior Member

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    NLP is Neuro Linguistic Programming - a form of psychological therapy. Look on google.
     
  9. Spinney Lainey

    Spinney Lainey Senior Member

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    Only blood vitamin levels.
     
  10. Spinney Lainey

    Spinney Lainey Senior Member

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  11. Xhale19991

    Xhale19991

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    Wondering this also.

    How can i have my doc check for MCAD?

    Any diet I can do to see if it helps my symptoms at all?
     

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