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Ok this is a stupid question

Discussion in 'XMRV Testing, Treatment and Transmission' started by hensue, Dec 18, 2009.

  1. hensue

    hensue Senior Member

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    Who else besides me have tested positive for pcr and latent? Does anyone know? Or am I being to intrusive?
    I know I feel horrible and I am ready to get the show on the road for something to make us all feel better.

    Feeling somewhat vulnerable and alone right now. You know how you feel when you have a bad flare.
     
  2. Jody

    Jody Senior Member

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    hensue,

    I can't answer your question, I'm afraid.

    Your thread did catch my eye because of it's title, and because ... I love stupid questions. They raise the most interesting issues. :)

    I don't even know what those words you asked about, mean. (Talk about stupid, eh?:p your stupid question was too tough for me. :eek: )

    So I wasn't going to post anything at first. But feeling vulnerable and alone, that I know something about. And that is something I can try to do something about.

    hensue. It is better to know something about what is going on with your health. I know you know that. And whatever it is, you have these forums and these people as your support network. I don't know what your situation is in terms of family or doctors or any of that. I can only say, you may be vulnerable.:) But you're not alone.

    Hang in there, sounds like you may be getting somewhere. And ... a belated welcome to the forums. :)
     
  3. margib

    margib Senior Member

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    Oh, don't we all (know what it's like to have a Super-Flare). I hate how our emotional life usually gets so tied up in the crashes we have, too. Please remember you are not alone. We are all wishing you feel better soon.
     
  4. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > and latent

    PCR- culture+ doesnt indicate latency.
     
  5. Kati

    Kati Patient in training

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    Hensue, I you may be one of the few that have been tested and is positive, but remember that there are lots of positives out there that haven't been tested or else that don't even know they have a retrovirus in their bodies lurking.

    After some reflexion, I willl wait before being tested- because at the moment a negative result would kill my soul. But there must be something in my body that is so terribly wrong that I can't do all the things I enjoyed to do, and make me feel miserable- I am not sure if I am in a bad crash or what, but the headaches are wicked these days- bedridden in a quiet room, just abour 23 hours a day. It's not getting better.

    I am grateful for this forum to discuss the issues surrounding our illness. I certainly feel less alone and less insecure facing doctors and disability police.
    (Thank Cort)

    Hang in there everyone- group hug!;)
     
  6. gracenote

    gracenote All shall be well . . .

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    there are others out there

    Hensue,

    I know there are not many on this forum with a positive XMRV test, but I wonder if there is a way for you to connect with those who were in the Science study? There are over a hundred positives somewhere in the world, including that patient that was on Dr. Oz.

    I definitely know how it feels to have a bad flare, but I don't know (yet) what it feels like to have a bad flare while knowing I am positive for XMRV. I do know how it feels to have a bad flare while waiting for my XMRV results which I was told would be here a month ago, but I realize that's not the same at all.

    Take care of yourself. And thank you very much for sharing your results and keeping all of us posted.

    Gracenote
     
  7. Mark

    Mark Acting CEO

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    What Jody said. You're not alone, hensue. Sharing our ups and downs is incredibly powerful and liberating. In normal life, we don't get to do that, it's not considered polite to talk about the negative things in our lives, about our pain and suffering. But here, when you do that, not only are you helping yourself, you're helping other people as well, and the detail is all vital for us all because other people will spot similarities and that always seems to lead somewhere interesting and useful. So nobody should ever be afraid to describe the dark times here. A remarkable place!

    It's hard to imagine the stress of the test results process, I'm sure it must be a real rollercoaster, and that's going to trigger relapses, that's happening to lots of people recently I'm afraid. Meditation and heeding all the spiritual advice is all I can suggest; I imagine at times like this, you have to somehow try to put it out of your mind and get on with your life, reminding yourself that for the moment, we don't even know what the test results mean, so some patience and perspective is appropriate - not that I do very well at heeding that sort of advice myself, which is probably why I get told all this stuff so often. :)
     
  8. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > headaches are wicked these days

    Considered bruxism?
     
  9. Martlet

    Martlet Senior Member

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    Hensue, you are not alone. We are here, so never feel as if you have nowhere to turn.

    This flare will pass, your emotions will return to a more even keel and in the meantime, just keep posting. And remember, there is no such thing as a stupid question.
     
  10. Kati

    Kati Patient in training

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    Eric, I have grinded my teeth all my life- without a headache. I have been wearing a nightguard for years now. The headaches have come and gone during the last year, (illness onset Nov 2008) but worse as my health declined.

    I got a crash a month ago folllowing a functional assessment for disability- with disabling joint pain- and now headache- I think this is disease related. My functionality keeps decreasing, worse since the FCE-
    I would call that generalized inflammation?

    ETA: the headaches are worse when I talk- curiously enough-

    Looking forward to my consultation with rheumy in January 5th- been waiting a long time for this.
     
  11. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Well, you could always have grind (or clenched) for years, and then have started doing it harder. Its something where you sort of have to shift for yourself sometimes, because bruxism gets rather little attention from MDs or PhDs.

    I'm a bit of a bruxism evangelist.
     
  12. Kati

    Kati Patient in training

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    LOL @evangelist Eric... Personally I think this is plain CFS headaches- it usually started in the afternoon- and if I'm not lucky will carry on till the evening and if it's plain evil I will get up with it, like it's happened in the last couple days.

    As for bruxism, I'd usually have TMJ associated with too much grinding the night before, usually in my case associated with stress.

    Now off you go pray for all the grinders in the world:p
     

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