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symptoms question for people who are XMRV positive

Discussion in 'XMRV Testing, Treatment and Transmission' started by bigmama2, Jun 23, 2010.

  1. bigmama2


    FL, PA
    if you have been tested for xmrv and are positive- can you please describe your cfs severity, main symptoms, and daily life??? It would be really helpful for many of us who have not yet been tested to hear about your experience with CFS.

    if there is already a similar thread like this, can someone point it out to me?

    I am wondering if I might be xmrv positive. I've had cfs many years now. at my sickest, for several years- it was a big struggle to just do the basics of caring for myself (cook, clean, errands, etc). i would sleep 15-18 hrs a day. that was real fun-NOT! i am much better now. only sleeping/resting 10 hrs a day. but still have good days/bad days. still get crashes/PEM after too much exercise. last one lasted 3 weeks.

    I will most likely get tested for xmrv eventually.

    thanks and best wishes,
  2. ukxmrv

    ukxmrv Senior Member

    There is a questionnaire for XMRV+ created by some folks on this forum. Not sure when they will release the data.

    I am XMRV+, acute viral onset (completely well before), very bad post exertional problems, mainly viral and neurological symptoms (plus blood pressure/POTS).
  3. grant107

    grant107 Jean

    Ormond Beach, Fl
    I am very disabled and sick for almost 23 years and I am xmrv+. However, I have an aquiantance who is much more mildly affected. He plays a lot of golf in 90 degree heat but will go for several weeks no one sees him. He has tested xmrv+. So we cannot judge who is going to be positive by the severity of thier illness.
  4. Francelle

    Francelle Senior Member

    Victoria, Australia
    bigmama2 - an interesting thread potentially. Pity you haven't had more respondents! Personally I can't comment as I have not been tested yet.

    My guess is that there is wide variability in dominant symptoms but let's wait and see.
  5. SunnyGal

    SunnyGal Senior Member

    I have had mild symptoms off and on since I was about 9 or 10 years old, but nothing severe enough to really interfer with my life. After getting pregnant the first time over 10 years ago I got much more sick. Fatigue and PEM were my biggest issues, but I was able to keep working. After very severe work stress 4 years ago I got really sick. Very, very viral, lots of fatigue, PEM, totally messed up sleep, pretty bad neurological issues. I was able to keep my job during all of this (only thanks to a really good employer). With treatment from my LLMD I've gotten lots better, can think again, sleeping decently. Still big issues with fatigue, PEM, POTS and tachycardia, though.

    My guess is also that there will be a wide variety of symptoms in XMRV + folks. Hope more people chime in, though.

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