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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Any advice?

Discussion in 'General ME/CFS Discussion' started by burgeo10, Jun 1, 2014.

  1. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX
    @SOC

    Well i'm obviously not the only person that read it that way given the context. @Misfit Toy read it the same way that I did.

    "And having a nasty virus, or multiple nasty viruses, replicating uncontrolled in your body is not scary and seriously bad for your health?"

    "And living your life the way you are now doesn't scare the hell out if you? NOT taking necessary meds has scary consequences also.

    I'm not suggesting you should take Valcyte. If you don't have chronic hhv6 or CMV, then you probably don't need Valcyte and the risks clearly outweigh the benefits. Also, some people with MCS-type symptoms can't take much of anything."


    I don't possibly see how you can assume that after making statements directly addressing me and then going into anecdotes about you and your daughter that I would not think you were drawing parallels to me. Do you not see how I could have interpreted it that way? I'm not a selfish person so of course it's not always about me.

    Either way I don't want to get into an argument over something so frivolous. I'm sorry there was a miscommunication between us.
    Misfit Toy and PNR2008 like this.
  2. Allyson

    Allyson *****

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    Australia, Melbourne
  3. Allyson

    Allyson *****

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    Australia, Melbourne
  4. Allyson

    Allyson *****

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    Australia, Melbourne
    yes that is what I mean please - just been tested for it but not sure what it means

    thanks

    ALlly
  5. Allyson

    Allyson *****

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    Australia, Melbourne
    good luck - the GP may need some info on POTS tho - it is a very common ME symptoms but few are tested for it and even fewer docs seem to know anything about it

    here are some sites to ask for a POTS doctor near you

    good North American Doctors for ME etc

    https://www.facebook.com/groups/1438285386415297/

    good Australian Doctors

    https://www.facebook.com/groups/287952358017187/
  6. caledonia

    caledonia

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    Cincinnati, OH, USA
    I found this website that explains things well. https://www.alpha1.org/newly-diagnosed/what-is-alpha-1

    How many copies of the gene mutation do you have, and are you experiencing lung or other symptoms? Is your doctor being helpful?
  7. Allyson

    Allyson *****

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    Australia, Melbourne
    THanks for that Caledonia - I have just had the test go for results next week
    doc actually know a bit about it and said my parents - as they were smokers would have had serious issues e to the combo of smoking and Alpha I . will let you know when I have the result.


    Thanks again for the link - super!

    ALlly
  8. Allyson

    Allyson *****

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    Australia, Melbourne
    but - having read your helpful link - my dad di have liver cirrhosis I think so will be interested to get the results

    Ally
  9. burgeo10

    burgeo10

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    @Allyson interestingly the doctor thought i might have Ehlers-Danlos without me prompting him, but going to have more tests next week. I do have another question if anyone can answer it. I stopped taking l-carnitine mid-week because i thought it might be making me feel worse, and I did improve towards the end of the week (although who's to say that was because of a lack of carnitine). Furthermore i started taking D-ribose this morning (the CorvalenM), and immediately had to go to bed for 2 hours. I've now woken up and still feel very tired and a bit nauseous. Has anyone felt like this before? Thanks :)
    Allyson likes this.
  10. waiting

    waiting Senior Member

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  11. Allyson

    Allyson *****

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    Australia, Melbourne
    try and see how your feeling bad suddenly relates to
    1 how much time you haave sent right recently

    2 when you last ate

    both will mess you around due to lack of blood to the brain - IE POTS
    have you hd a TTT yet?
    ALly
  12. optimist

    optimist Senior Member

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    Norway

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