XMRV - Virus taking over the host

Discussion in 'Fibromyalgia Main Forum' started by fight4acure, Dec 20, 2009.

  1. fight4acure

    fight4acure Member

    I sure miss you all!

    Anyway, I went to the doctor's office early this month, and my doc, whom I had given several years of studies/research papers expressing FMS and CFS as real and how some people with CFS may have many viruses causing problems without our bodies,... well... told me that he has some good news for me. So I listened, and he told me that they think CFS may be caused by a virus. I gave him 5 years of info on this, and now he's finally believing what I was telling him and showing him in research studies, and then he seemed kind of surprised that I had no reaction, lol. I should've told him, congradulations, but I didn't find the humor in his surprise. I wish I would have, then he would've felt as small as I did at the time. Does he think I make this stuff up on my own, or did he just not believe scholars who are far more intelligent than he is, about the past viral connections? No comment.

    Well, miss you all and just wanted to say, "Hi, I'm back, and boy am I glad our doctors are finally getting it, but wait until they find out it is more than just one virus for some, if not most of us, that is, those who have suffered Lyme disease or other viral illnesses. & of course, this is not true for all, but some on here anyways.

    I'm extremely impressed with DR. OZ! At least one good doctor out there!

    Fight4acure!!! :)

    P.S. After years of being DX with this, my cousin, whom I moved in with for a year, tells me I made up the DX after seeing Dr. Oz show, when I wanted to show him the show I recorded, to explain to him my illness and why I've been unable to work anymore. Figures, lol! They shouldn't call this viral host XMRV, more like SOL!!!! LOL....... or NARD (need a real doc)... or UACWAP (UP a Creek Without a Paddle)......lol!


    [This Message was Edited on 12/21/2009]
  2. karinaxx

    karinaxx New Member

    So happy to see you here. Welcome back!
    Exiting times for us! I am really holding my breath for what is going to happen next........

    All the docs who have been, in one way or another, misstreating us will have to rethink how they treat illnesses and the patients in generall. There is so much wrong with our health care system.
    Makes me so angry, especially all the children who have been made worse through ignorance and all the parents unjustly accused of making their children ill !


  3. fight4acure

    fight4acure Member

    Hi! Thank you for replying and welcoming me back. I have not been here for a while and miss all of my friends.

    Tough times for me lately. I'm facing applying for disability, something I have tried not to do, but can no longer fight it. No more energy and too much pain, and I'm on too many medications that tire me out as well and take away my memory. But without them I would have little control over this pain.

    I should be excited about the news, but I guess it took too long and even with the news there is no cure in site. Maybe I'm coping right now and will start thinking positive eventually about this. How a doctor calls this good news is beyond me at times. I'd rather be told I have some bacterial infection that can be treated, or even something worse, as long as it can be treated. But to be told that this virus is in the same category as the AIDS/HIV virus is pretty darn scary, to say the least, and then having no treatment for us yet.

    I fought hard with others to have this illness recognized as real, but now I wish it wasn't. Does that make any sense?

    I just pray there aren't many people with CFS who aren't having other symptoms checked out of other illnesses they have comordid with this darn disease.

    We need lots of prayers. Prayers to the good doctors and good researchers to find us a cure or some treatment to help us out.

    Again, I wish I could be excited about this, as they've finally done something for us after all this time. Twelve years of feeling like I'm a Prisoner Of War in my own body just cannot be justified. At times I've gotten so mad at the doctors that I've wanted to share my pain with them, and then ask them if it was psychological. I guess that makes me somewhat insane...

    But, we still have to keep on fighting, no matter how upset we are or sad and angry we are. We have done a great job educating our doctors and I hope we keep up the good work! Keep writing to our representatives, telling them how important it is to continue funding for more research on CFS and FMS, especially during these hard times when people cannot work and have heat bills to pay and are broke as you know what. I pray that our disability filings are taken more serious now, and not be treated like we are malingering, making-up, our symptoms, our pain, our fatigue, and how truly ill we are.

    Fight4acure! :)
  4. FibroFay

    FibroFay New Member

    Welcome back!

    Thank you for all you have done to help our cause. I'm glad you are back. We should be taken more seriously now. Things are achangin.

  5. fight4acure

    fight4acure Member

    Thank you! You are welcome! Yes, our activism has paid off! Thanks to all who helped to push fighting for a cure, research, and treatment!

    Yes, indeed, a change has come! Just wish I could be excited about doctors finally telling me they know it is real. It's like a slap in the face. And instead of being excited, I'm scared as all get out. What I have known for 5 years has come full-circle around.

    Let's hope and pray they find us some well-deserved treatment and/or cure. We've suffered too long to stop pressuring them to finally get us something that helps us for more than a few months, if that.

    Fight4acure, Fight2Educate :)
  6. karinaxx

    karinaxx New Member

    I understand you are frustrated about all the years suffering (me to) and yes , for soo many, help has come to late.
    I am excited because i know my son, who is now 13, will have a future. The fact that AIDS has had so much funding and AIDS medication has become better and better, will also help us too. I do have now hope now for a life for my son and that is more than i what i got just a few month ago.
    It will take time, and for us who have already lost so many years, every month spend with this horrible illness,every month is to much.
    I also have relapsed this last months. It is horrible when you have been better and than your back to days where you can hardly move, legs again paralized, breathing difficulty, muscles spasms, cramps and pain,..... the list goes on and every thing comes to a stop.
    (I was stupid enough to have stopped my meds, which helped me for the past two years to function at least part time normal.
    But this is another topic.)

    Lots of hugs
  7. fight4acure

    fight4acure Member

    It is people like you who keep me thinking positive during the times I find it hard to have hope. Thank you for sharing your story with me. Yes, the children will now be treated like they have a real illness. But I guess I'm still bitter that they do not have a good treatment for all of us, yet. I guess I should count my blessings though. I'm glad for your story and I'm glad that you see a bright future for your son! :)

    I guess I can say I'm jealous that you got a breather. I haven't had one since Jan. 1st, 2001. That's a long time for some relief. Instead of month to month, it's minute to minute for me. One moment I feel less pain but know that at that moment I'm going to face really severe pain soon, so that makes me sad, so I can kind of relate to how you're feeling.

    The hardest thing is giving up my goal to be a social worker. I went to college for it, got my license, everything. Then my body got progressively worse. Now its so hard to even climb up the stairs to go to my bedroom at night, and even harder to go down the stairs to get to the bathroom in the morning. I have lots of friends, but I don't keep in touch with most of them because I'm embarassed about this illness and what it has done to me, and I have nothing positive to share with them. So, yes, this is long over-due, and in some ways I hate my doctor for acting like this was good news, not only because I've been sending him similiar info for years, but because hearing what I believed was true is so hard to swallow, and my family are all in denial that I would have such a virus. They do not believe I'm ill, because I've been the strongest one in the family, holding the family together, but they'd never tell me that.

    Okay, I'm rambling now.

    By the way, don't ever feel stupid for going off the stupid meds we have to take. I've been known to do that often. You know what that means? It means that you are happy when the symptoms let up, and that's great! I feel the same way when I've had a few hours of relief in a day, when I'm lucky, and I too go off the meds. I get happy, but then I get sad because I know it is only going to last a few hours, if I am fortunate enough. Then I get one of my worthless boyfriends to massage me, if I'm lucky.

    Fight2Educate :)
  8. fight4acure

    fight4acure Member

    Thanks, I'm so glad to be back. I've missed myself! I feel far better emotionally now that I'm back, but not so good physically. At least I get one out of two!

    Yes, the *now is a nasty 4 letter word. I appreciate you saying it in a sensitive way, lol.

    If only I was in Hawaii right now.

    So sad to hear that you have been having mini-strokes, or small strokes. (((((((((((((((Hugs))))))))))))))) When did that start happening, and when did they find out?
    I'm glad you lost some weight! I've gained the pounds that you've lost while on my meds.

    Massages help with pain so much. Too bad I can't have a few gentle ones a day.

    Sorry to hear about lost investments. But I wonder if any penguins were involved in that stock market mess.

    Well, time for me to eat some pudding and watch TV and take meds for my monthly cramps, as I have my you know what pretty bad right now, heavy and painful, as usual, but at least it is down to two days a week instead of 5. Early menopause? Not sure, but don't care either.

    Oh, oh, cat fight! Got to go!
  9. fight4acure

    fight4acure Member


    That's scary Hon. (((((((((((((((((((Hugs))))))))))))))))))
    I get so angry when doctors don't notify us of stuff, as I've had that happen a few times to me and a few times to my ex-bf. His was life threatening! His potassium levels were to the ground and no one called him back. Now he goes to a different clinic than I do, one that notifies people better.

    I haven't filed yet, but I'm filing before the year is over. I may not have to get a lawyer, but we shall see. I'm on so many meds and can do very little anymore, but I guess I can do more than bedbound people. Got to get on welfare as well. Not fun. Wish I could work so badly.

    What crash? I forget what we were talking about.


    Fight! :)

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