xmrv test

Discussion in 'Fibromyalgia Main Forum' started by hensue, Dec 10, 2009.

  1. hensue

    hensue New Member

    told you i would let you know. Positive for both pcr-active and culture-latent.[This Message was Edited on 12/10/2009]
  2. quanked

    quanked Member

    Good to know that you may have identified the cause of your illness (or at least a contributing factor) after such a long time suffering.

    Bad because the more we learn about XMRV the worse it sounds.

    Sounds like you will be taking a different journey now.
  3. hensue

    hensue New Member

    just took the wind right out of me.
  4. spacee

    spacee Member

    I'm so sorry. I wish you very good treatments that will help you feel better and give you a long life.

    ((((HUGS)))))

    Spacee
  5. GoWest

    GoWest New Member

    Hi,
    I am waiting to get tested. Which tests did you get? I am planning to get the PCR and culture, but I don't know what you mean by "latent."

    Also, did you stop any supplements or treatments prior to getting tested?

    Thanks,
    Paula
  6. hensue

    hensue New Member

    Fibromyalgia now for almost 12 years and chronic fatigue.
  7. karynwolfe

    karynwolfe New Member

    Wow hensue, so it came back positive after they redid it?

    (((((hugs))))))

    Any virus at all isn't good but do your results mean its not active right now?
  8. hensue

    hensue New Member

    PCR - active positive- infectious
    culture-latent
  9. karynwolfe

    karynwolfe New Member

    oh no, i'm sorry... with glen, we are here for you, eespecially as more and more of us (probably) test positive
  10. ladybugmandy

    ladybugmandy Member

    CONGRATULATIONS!!!!!!!!!!!!! this is WONDERFUL news!!!!!!!!!!!!!!!!

    NOW you can FINALLY start treating the cause of this HORRID disease.....and STOP the damage being done to your body.

    o God I hope hope hope I am also positive.

    thanks so much for letting us know.

    Love you
    Sue
    xoxo
  11. denis321

    denis321 New Member

    I hope we come up with good treatments soon for XMRV and find out what else is going on if people don't have XMRV.
  12. mbofov

    mbofov Active Member

    Thanks for letting us know. I'm sorry your tests were positive, but I am sure you will have much more company in the days and weeks ahead. I plan to get tested when we know if Medicare will pay for it, hopefully soon.

    When I first heard about XMRV, I got very depressed at the thought of it. But now I look at it differently - it may be possible now to get some real treatment when we know what we're dealing with, to know what to do.

    Anyways, take care - remember, as Glen said, we are all here for you -

    Mary
  13. skeptik2

    skeptik2 Member

    Good news and bad new, huh? Hugs!

    Of course you are not alone...or, soon won't be. Many of us here
    will soon be in the same boat as you, so let's all get on our lifevests
    and hold on to each other if the boat gets overloaded and tips
    over, ok?

    Be sure to let your primary care dr. know so s/he can start learning
    all about XMRV and be ready when the treatments come along.
    Then you'll soon be on your way to getting better...won't you just
    love that? Think ahead, ok? cuz you've been suffeing a long time,
    and it may take a long time to get to feeling alive once again, but
    at least you'll be on the path to living once again. I don't care how
    old anyone is, once we begin to be well for extended periods of
    time, we can have the life we want...laid back, busy, frenetic, or
    whatever, at least it will be the life we choose, not something
    forced upon us by this dd.

    Poor darling, you must be in shock. Do take the time to breathe,
    relax, and then begin the next step of your journey. We'll be right
    here, in case you need us. Of course we'll be delighted with you
    when you begin some treatment that helps you, so don't get too
    happy and forget to let us know, you hear me?

    Love and hugs a thousand times,
    skeptik2

  14. hensue

    hensue New Member

    The shock is wearing off, I am not going to panic, I will retest when the fda approves the test.
    Then go from there. I really dont think that will be to long off.
    My biggest concern are my children and Grandchildren.
    I am not telling any family until all of this is out and fda approved.

    Not saying I might do some clinical trials. We will see...

    All of you are soooo supportive and always have been. To keep me in check my son just called who is getting out of army in 12 days. Tired and exhausted so I had to give him pep talk.
    I will do whatever it takes like a Mama bear if all this pans out. To protect my children....
    Hopefully we will have a vaccine for little ones too.

    If you have fibromyalgia, which you do or you would not be on this board. Get tested when you
    can.
    Thanks I will always be on this board until everyone feels decent again.
    hensue
  15. gapsych

    gapsych New Member


    Thanks for the information. What is your functioning level? I am too tired/fibrofog to remember of do a search but if you could post or point me in the right direction, I would appreciate it.

    Thanks.

    gap
  16. ladybugmandy

    ladybugmandy Member

    i wanted to apologize for seeming so happy about your test results. i guess i am coming from a different place; i did not mean to seem insensitive.

    i had forgotten that you had kids and grandkids to think about as well. that cannot be easy.

    sue
  17. kat0465

    kat0465 New Member

    that it would b Positive hensue, i have a feeling most of us will be. Like you i worry about my children & don't exactly know what i'll tell them if i too am Positve.

    My daughter is so freaked out everytime i get really ill or theres something new going on, Also she shows signs of cfs also.

    How are your children? are they healthy??( not trying to be nosey) just wondering how many of us here have children that we suspect are sick also.

    im just hoping she has a milder form of this than i do, or if she will crash hard as she gets older. Maybe now they can stop it from devasating a new Generation:(
    Kat
  18. ladybugmandy

    ladybugmandy Member

    they are racing to find new meds. even the CDC. everyone is scared chitless now...its in the blood supply too.

    this is going to be HUGE. no more suffering silence.

    they will find better, less toxic drugs - they know so much now from HIV - and they will come up with a vaccine quickly.

  19. hensue

    hensue New Member

    It is just a matter of time and to be tested. It has to be in the blood supply to many people have it and do not know it.

    Lady dont worry about what you said I know what you mean.
    Ga what is my functioning level? pretty bad! No excersise what so ever not one quarter of a mile.
    One thing I have done since I got this many years ago. I went to an alt doc also. He said you have no immunity.
    So I started taking fibro care vitamins which I am sure pro health probably has them.
    fibro care magnesium and malic acid that seem to help the pain.

    I did take fish oil but I found out I felt worse when I took it. If I was not Wellbutrin I am sure I would be in bed all day. Some days I am.
    I do not clean or cook cannot wish I could. Use to work full time as Office manager took care of whole store. I was also in sales now I can barely get through the day to talk.
    Accounting I could not do that any more at all. I also won spelling bees every year. Now I cannot remember simple words.
    PAIN and FATIGUE are the biggest culprit.

    The weirdest thing is I was diagnosed with Fibromyalgia and new all the time I had Chronic fatigue.
    My doctor that finally convinced me was at Emory in Atlanta a neurologist. I had a feeling this had to be my nerves, brain???

    It was to weird bladder spasms, pain all over so bad you could literally commit suicide. I could hardly get the hair dryer up to my hair. Much less shower.

    I have learned to pace as everybody says because cannot do much to begin with. If I do I will be in the bed for days voice tired, body feeling like the flu.

    I will say I got a little better after a hysterectomy. My gyno told me I had no hormones.
    I had terrible reactions Pain to any kind of hormone treatment. My body just violently rejected it.

    I just turned 56, did I say that aloud? I plan on beating this thing even though my doc is clueless. He is going to give me the paper from VIP the blood results he is not even keeping a copy.

    Lady you hang in there, we are going to get better now.

  20. greatgran

    greatgran Member

    Now that you have tested positive what is the treatment ? How did you get tested and would you explain the results guess I haven't been reading enough on the XMRV test. Please keep us updated.

    When you said you were not going to let your children know does that mean when we test positive it is real bad or that you have an answer for why you feel so darn bad and waiting on more info before telling them.

    Sorry but I have been in a daze or something can't think straight enough to post.

    Good luck and God be with you,
    gg