You can help me more than my doctor!

Discussion in 'Fibromyalgia Main Forum' started by gerry50, Feb 23, 2010.

  1. gerry50

    gerry50 New Member

    I am a middle age man, with CFS since 2001. Before this catastrophe I was a very active man full of energy with an amazing passion for life! After 2001 my life has changed and I need to leave my job and became a human larva. I visited 40-50 doctors and felt humiliated hundreds of times. Finally two years later I find a doctor who diagnosed my CFIDS. I got disable and I was leaving hiding my self from the world.

    In the 2008 I decided to change the approach with this illness; basically I decided don’t push too much, be positive, serene and try to live my life and accept the limitations.

    Two years ago I met a fantastic person who helped me a lot. We follow in love and I am so happy that she will be the women of my life. When I was healthy I never find a angel like her and now I found my half. She helped me, with her love, to forget that I was chronically ill.

    Just a few days ago I visited my specialist doctor and he told me about this new retrovirus XMRV possibly linked to the CFS. I went home and I started to read more about this retroviurs and I felt so so bad thinking that I passed this disease to her. I got very sick again.... I cannot do this to her....! I cannot give to this innocent person this disease. She is the mother of two young children and she is, for my eye, the best mother in the planet.

    Now I ASK you, from deep of my heart, if you can you help me!
    I would like to collect information and your testimonies, as PCFS who has long relation with your spouse or partner, if you have heard or experienced that CFS can be passed to the partner with unsafe sex.

    I am sure that you can help me to understand what is going known here.

    I appreciate very much


    [This Message was Edited on 02/23/2010]
  2. karynwolfe

    karynwolfe New Member

    A very reputatable research organization did find XMRV in severely ill patients, therefore they advise people to treat it like a sexually transmitted disease until more is known (in other words, use protection). HOWEVER, no one really knows if XMRV really -causes- this disease (I personally think it could be a huge factor), and right now there is no test to say for SURE that you do have XMRV. (There are some tests, but they are NOT very reliable so I'd save your money until the real thing comes out, which will hopefully be soon.)

    According to the main study, 4% of the population may have XMRV -without- being sick. So even having XMRV doesn't automatically mean you get CFS or M.E.--it seems very likely because of the correlation, but we really don't KNOW yet.

    If it were me, I would start using protection just to be safe, I imagine it would give you both some peace of mind.

    According to one study:
    The chance of familial CFS occuring were the highest if your mother had it. You had a moderate chance of getting it, if you had a sibling with it. And chances were very low if only the father had it.

    I hope that helps a little, if you are worried about the children!

    I'm sure more people will comment, I've read time and time again on here, how people have been married for decades and their partner never got sick.

  3. nah.stacey

    nah.stacey Member

    This is such a catch 22.
    I have been married to the same man for 27 years and I've been sick most of my life but only DX since 2003.
    In the last couple of months my husband has been showing signs of my early years of suffering, ie. the exhaustion, the occasional odd flu but too often to be JUST flu, the out of the blue sore throat that goes away etc.
    I cannot prove that he has this yet or that I am even positive XMRV, I am positive something though, and am terrified of him truly getting this.
    I do know it's hereditary as my father has it, and my second son.

    I can only tell you to be very, very careful. Perhaps not having UPS when you are in a flare, or even, as my kids used to say "swapping spit"(heavy kissing).

    I am glad you found someone to share your time with and especially who accepts you illness and you as you are.

    Best of luck with your research and please for everyone here, KEEP POSTED.
  4. AllWXRider

    AllWXRider New Member

    they can easily go through a condom. Condom don't protect against HIV...another virus.

    I have CFS, but my wife doesn't. Her immune system is in great shape.

    Is CFS caused by XMRV, HERV-18 or another unknown virus? The best defense is a great offense...namely your immune system.

    "80% of the immune system is in the gut" so Probiotics, fiber, lots of veggies. Mushrooms like reshi, matake, shitake are used as food for white blood cells.

    Consider vegetable juicing. Fresh vegetable juice has helped many recover using powerful nutrition enzymes and many undiscovered vitamins. Cooking, canning and bottling use heat to pastuerized and destroys phyto-enzymes.
  5. gerry50

    gerry50 New Member

    I don't think I want to have children in the future; my partner already has two great treasures.
    My concern is about to transmit to her this debilitating disease.

    In the past, every time I visited my CFS national famous doctors they always said to me that there aren’t scientific results that prove that this syndrome can be transfer to your partner via unsafe sex.

    Now the controversial around this retrovirus XMRV is huge. Top CFS experts and virology in UK with two researches couldn’t find any trace of this retrovirus in more then 500 CFS patients. In this team there was Dr. Jonathan Keer who was a consultant for the US discover last October. The Science isn’t clear about this link from CFS and this retrovirus.

    So why for me the testimony of long time patients are more effective and real.

    Tell me about your experience if your spouse has been affected!

    THANK YOU ALL very much.

  6. hensue

    hensue New Member

    I am positive xmrv and I have been married 37 years. My husband is getting older 60.
    He has signs of slowing down but no sign of fibro or cfs Thank God.

    I do not feel she is in danger and I would not feel like I had to discuss the virus with her.

    Nothing is in stone yet. No validated or replicated study. I myself would not give blood or tissue by any means.

    If anything I think it is handed down in families.

    They just do not know enough yet for you to be that fearful. We do not know if it is the cause like many on board have said.

    I think if my husband were to swap blood, you know what I mean. He might get the virus or if he got it his body could tolerate it and be normal.

    Right now take it for what it is worth and enjoy life and quit worrying about xmrv until we have to.

    Gerry my husband has hep c and has had it since the 70s. My kids did not get it and I have not gotten it. It is more or less spread by blood. Our doctors said just do not brush your teeth in the same area if your gums are bleeding. Do not shave in the same area in case you bleed.
    My husband has always had a seperate bathroom. I have my own and the kids have there own.
    Or the kids and I share bathrooms.

    If she has children that is wonderful. Do not worry just be cautious about any blood contamints.

    Then again our blood supply people say we can give blood so we really do not know.
  7. AllWXRider

    AllWXRider New Member

    Friction does break some capillaries between both partners. This is how VD or STD infections are transferred.

    Again, my wife displays no CFS symptoms, her immune system is in great shape. She is a school teacher and supports me. Puts in a 10-11 hour day. We use no "protection" as you call it. Her tubes are tied, so that's how it is.

    I would bolster each other's immune system, and enjoy "relations" in your relationship.
  8. Bunchy

    Bunchy New Member

    As long as they are used properly and carefully. There are extra strong brands too for added protection. Obviously there is always a small risk even with condoms but it is minimal. Gerry, I believe there are spermicidal creams/gels that your partner could apply herself for additional protection.

    XMRV may not even be the cause of CFIDS - we don't know yet.

    Gerry - in the meantime, use condoms, be careful not to let any bodily fluids (especially blood and semen) come into contact with open sores or wounds on your partner and exercise caution as you would if you had HIV.

    It sounds like you have w wonderful partner - I hope she continues to give you happiness, love and hope.

    There is a lot of info on these boards about doctors and therapies (both conventional and supplemental) that you could read up on and research.

    Welcome to the board :)

    Love Bunchy x
    [This Message was Edited on 02/24/2010]
    [This Message was Edited on 02/24/2010]
  9. gerry50

    gerry50 New Member

    More testimony from patients!
  10. deadtired

    deadtired Member

    You are not going to like what you hear from me. My husband and I are both sick with CFIDS
    as well as all our children. We still have not figured out this mystery....but always assumed this disease included something other than genetics as obviously we are not related and why would we both have the exact same disease. Looking back, my husband had several bouts with mono, as early as 10 yrs. of age. Even as a child his parents wondered if there was something "wrong" with his blood. He would get sick when run down. We both realized there was something wearing us down early in our marriage.After 10 years, In 1988 it was clear we were ill with something that wasn't going away. In time, all our children have shown symptoms. Your questions are very important ones. I am worrying about the same issues with our children as they are all young adults, with our youngest being 14. Everytime I think of them starting a relationship I stress over these issues, also. Our oldest son has had a steady girlfriend for four years now. I don't believe she shows any signs of illness or our son would have shared that with me. I am sure they have protected sex. I have heard of other couples with the disease. You hear obviously of couples where just one has it. Maybe its possible that some people handle the virus easier than others where it doesn't cause illness, or through luck it doesn't get transmitted easily.
  11. rockgor

    rockgor Well-Known Member

    Welcome to the board. Sorry to hear your are ill. I think you are wise to
    change your attitude and do the best you can under the circumstances.
    Lucky to find a wonderful partner.

    Like everyone else here, I don't really know the answer to your question.
    My partner and I are in our 30th year together. He still seems healthy.

    Good luck

  12. momenti

    momenti New Member

    Your wards are more important that any research to me.
    People with this disease for 30 years, like you, can give a realistic opinion.
    Thank you!
  13. momenti

    momenti New Member

    I appreciate your evidence with is real and honest.
    At this point of my life I still can suffer and wait that one day that all will be healthier but I will be devastated if I will infected my companion who help me to find hope again.
    Love you all for your valuable testimony.
  14. momenti

    momenti New Member

    thank's you all!