What to do about sharing the news of XMRV in fear of.............

Discussion in 'Fibromyalgia Main Forum' started by GigglePoet, Dec 11, 2009.

  1. GigglePoet

    GigglePoet New Member

    Well with news of the XMRV I am excited and wanting to share with my son who is a new Chrioprator and who has seen me suffer for 23 years however He and wife have just had their first baby almost 6 months ago I am concerned that although he might not say so he would be very frightened when it comes to my being with the grandbaby. In doing unto others I would not want the information held from me..I just thought I would get your ideas on this as well as see what you all are doing. I was diagnosed way back and have been on survival mode ever since I am sure this is my issue as everything else lines up including my fathers dying from Non Hodgekins Hystiocytic Lymphoma his father had lukemia and his fathers sister had lukemia..I also have Chronic EBV and have really been aware that the lymphoma could be what catches up to me as you are really set up for it with the EBV. Do I have to worry about kissing my grandbaby..will my son alway's feel me a danger when around? these are the things sadly running through my head and yet some of these things could have already been passed geneticly. I need to make a decision on this very soon. Have been waiting a month and a half since hearing the news break but due to my own personal health as well as his busy life moving and starting up a new practice the oppertunity has not presented itself. Let me know what you think ok!
    Thanks! Dee
  2. AuntTammie

    AuntTammie New Member

    from everything that has been reported so far about XMRV, as well as from all the stuff we knew before this discovery, I do not think that you have to worry about casual contact.....just body fluids, transfer from mom to baby in the womb, etc

    I know that there have obviously been out breaks among people who work together, go to school together, etc.......from what I have read, though, it still does not seem that XMRV is spread thru the air.....what I think might have happened in those cases (and others have reported this - their theories make sense) is that XMRV "piggy backed" on another virus

    .....if that is the case, then if you have somethign like the flu or mono or even a bad cold, it would be time to stay away from others bc of the possibility that XMRV might hitch a ride on one of those....however, common sense would say to stay away if you had one of those things anyway, bc i am sure that you wouldn't want to spread those either

    ETA: even in most cases, spouses and other sexual partners have not seemed to transmit CFS to one another - so if it is rarely being transmitted thru sexual contact, then I would think that casual contact is safe
    [This Message was Edited on 12/11/2009]
  3. FibroFay

    FibroFay New Member

    I've not said a word to my family yet. I don't know why I don't just tell them that research may well have found the reason for my illness. But, the timing has just not been right. I want to wait until after the holidays for one thing. And I hate to tell them I have something that they may have too. Oh, how I hate that.

    I haven't even been tested yet. I've had fibromyalgia for 14 yrs. It was never called CFS, but I believe it's CFS. My father died of leukemia at age 53. I've been very sick. I think I have xmrv.

    I need to tell my kids soon or they will be hearing about xmrv on their own and then figure it out for themselves. They have a right to know, and I must tell them right after the holidays.

    I guess my biggest fear is that my daughters and grandkids might have it too. I just wish the test would come out quickly so I can get tested and know for sure. It is frightening, to have it and to probably have passed it on to my loved ones.

    I, too, would like to know what others are going to do.

    Thanks for beginning this thread.

  4. ladybugmandy

    ladybugmandy Member

    i agree. just make a point not to kiss the baby on the mouth or share food and utensils. i doubt you are contagious now. when you are ill, i would be more careful.

    this whole thing is so weird..
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I would base your decision on what you believe about XMRV. At this time, some are saying it is not likely passed through casual contact or through the air. I am not convinced.

    So I say make your decision based on the knowledge you have at the time. If you find out you were wrong, then at least you didn't go against your knowledge or conscience at the time. You can only act on what you know. And given this situation, you can't be responsible for what you didn't know.

    Think about ten years from now, how would you look on your decision now. What decision now would leave you with no regrets ten years later?

    Another way is, what would Jesus do?

    And another way, what would you advise your child to do?

  6. gb66

    gb66 Well-Known Member

    I haven't told anyone about it yet except my husband. I am waiting until there is more information and until I test positive for XMRV, if that's the case. I hope our situation does not get worse in relation to other people, before it gets better. I would hate to think that we'll be avoided as if we're still contagious.

    No one in my family has this except me. I have been ill with CFS and FM for 31 years and it was a sudden, viral-like onset. Much like mono only worse. I am waiting it out. GB66
  7. GigglePoet

    GigglePoet New Member

    well...here is my update. It has been my goal for the last 2 months to write and share with all my doctors and family what was recently discovered but due to a string of infections one after the other and pulled tooth this was impossible. Opperating on a 1/4th slice of a brain cell I made my way to computer to take one last go at making that reality and my husband stepped in and kindly helped me editing my letter and helping me print up my news media copies. I addressed them and sent to all the doctors I have had in the last 13 years..( have been sick for 20) as well as some or any of my close friends and family explaining that this has given me hope and that this is a huge momumental happening for someone like me. I titled my letter..
    "Huston.. We have had a long bewildering Problem but now they may have found what has been causing it but more importanly someone is working around the clock to help us find our way back home."
    I sent to a handful of GPs, Dentist, Dermotologist, Chiroprator, children, best friend, family friend, phyciatrist,Natropathic dr.s. I wrote on the back of the envelope that this was my Christmas Wish. Inside I asked that they share this information with others that may be suffering with this illness so that they to may have a spark of hope. I feel like I have accomplished something huge and am very proud of myself for accomplishing this! I said..what better time than Christmas to share this wonderful gift and to thank God for the great thing he has done.