New here and excited but guarded about XMRV

Discussion in 'Fibromyalgia Main Forum' started by onset1990, Oct 8, 2009.

  1. onset1990

    onset1990 Member

    Hi, I'm new to this board. The news about XMRV has brought me here. I am excited and hopeful that someone out there still cares enough to find out what is causing this. I had acute sudden onset after the worst "flu" of my life in Jan 1990. There seems to have been a bit of an epidemic just previous to and after my onset. I have always believed this to be viral and that I have permanent brain injury. What I haven't been able to figure out is the respite, relapse nature of the illness. I am always ill, but not always out of commission.

    I had given up on CFS boards and even med. reviews. This has given me hope but it has also revealed to me the deep sense of disappointment and discouragement I have been feeling (and not acknowledging) about how little support I receive for CFS from my friends and family and even my physician. Even he takes it for granted and just "treats the symptoms."

    When you are sick for a very long time, it becomes routine for those around you. It never becomes routine for me. I am always, always surprised and dismayed that I am ill yet again, for whatever reason. And I am so tired of trying to track the reasons for relapse.

    I think once they have a test, a marker, and a better name we will begin to be taken as seriously as some of the more "popular" causes are. We can stop hearing "Yeah, I've been tired this week too," or "Try this new SSRI or SNRI."

    Anyway, this board seems like a good fit so I joined. I am not consistent about posting in groups. I can disappear when very tired or brain dead. Just wanted to say hi.
  2. AuntTammie

    AuntTammie New Member

    I'm glad to have you here and can relate to what you wrote, about illness in general and about the discovery of XMRV......I think that it is potentially really great news, but there are so many questions that arise as a result of this discovery...... and the possible treatments that are already being considered are pretty scary, toxic types of drugs (and would seem to be lifelong regimens, since retroviruses never go away)
  3. onset1990

    onset1990 Member

    I have been given so many drugs that I reacted to over the years I am phobic about them all.
    I guess I just want the illness legitimized in the public. I am tired of being ignored as if I am lazy. I think I am more excited about legitimization and health insurance and disability than I am about the potential for treatment! I know that sounds bad but I am 56 and have been sick for almost 20 years. I tolerate the illness now, where before I was incapacitated.

    I would be very careful about what kind of side effects of treatment would be a problem for me in contrast to the level of functioning I currently have, which is "acceptable". I may not participate if my life weren't at stake if the meds caused a lot of misery.
  4. Nanie46

    Nanie46 Moderator

    Hi and welcome,

    I also thought for 21 years that the cause of my illness was viral...also had a bad flu like illness in 1989.

    I found out through my own research through that the cause of my illness is a chronic borrelia burgdorferi infection and associated tick borne coinfections.

    Many other people with CFS or FMS have discovered the same thing.

    I urge you to read this paper in it's entirety.....

    I hope you get some answers and recover.
  5. jasminetee

    jasminetee Member

    My onset was 1985. I know exactly how you feel. I think it's the Whittemore-Peterson Institute that is really making the difference this time with the right research getting to the right newspapers.

    I don't know whether this is the answer to CFIDS or not, it seems like a strange link with Prostrate Cancer. We'll just have to see.

    I can't handle most Rx drugs either.[This Message was Edited on 10/08/2009]
  6. onset1990

    onset1990 Member

    I have been evaluated for Lyme disease and I also don't fit the profile or have the symptoms. I realize how important it is though for that to be investigated early when someone presents with symptoms that could be confused with CFS.
  7. onset1990

    onset1990 Member

    I only heard about them for the first time today! Imagine my surprise at finding an institute for Neuro Immune Disease! That is so cool.
  8. AuntTammie

    AuntTammie New Member

    I can't take most meds either.....I react very very badly to almost everything I have tried (and that is an extensive list) latest exp of that is with LDN (considered very safe and easily tolerated, originally given to addicts at doses of 50 mg, found to possibly be helpful for fibro and CFS at much smaller amts - up to 4.5 mg......I can barely tolerate 1/4 of the 4.5 mg cap, so that is 1/50 of the amt that is routinely given to addicts)

    ....if that small of a dose of a supposedly extremely mild drug makes me react so badly, I cannot even imagine how I would respond to the heavy duty drugs that they give people for HIV and cancer....they would kill me

    I do agree, though, that the legitimization, etc will be wonderful
  9. simonedb

    simonedb Member

    I couldnt tolerate it well either, I really hung in there with it because could see the potential but I was taking practically a homeopathic amount and then when had pain flare it couldnt take care of it.

    I am curious what sort of treatment they will recommend for people who have had this a long time and have no tolerance to meds, I couldnt tolerate valtrex when tried experimentally this year.
  10. Shirl

    Shirl New Member

    Onset, am not any help, but wanted to make you feel welcome. We do have some very informed people here to help you along, and to encourage you.

    I have had Fibro for over 20 years, the CFS I get now and then, and you are right no one really believes you are ill! the problem is, we usually don't look ill, so people simply think we are 'imagining' it, or just plain lazy.

    I cannot take the drugs, am allergic to most all of them. None cure us anyway. I think they use us for lab rabbits most of the time with the drugs.

    I gave up on them, I only take a low dose of Xanax to sleep, no other prescribed meds. I try vitamines and herbs. Seems to help somewhat.

    Again, welcome and I do hope you fiind some help soon!

    Shalom, Shirl

  11. onset1990

    onset1990 Member

    for the welcome...
  12. LindaJones

    LindaJones New Member

    It is important to educate the medical community about CFS.
    I think it would help a lot.
  13. loto

    loto Member

    for the news for all of you that have CFS. I hope this is a new lead to a treatment for it. I was never diagnosed with CFS, only FMS.
    Can anyone tell me how exactly they were diagnosed with CFS?

  14. jasminetee

    jasminetee Member

    In my case, I was diagnosed with Chronic Epstein Barr Virus in 1985 which later had its name changed to CFS by our wonderfully compassionate CDC. lol

    I had to go to many specialists and have many tests done and it took many doctors before I had a correct diagnosis. I think it took about 5 months or so. Basically, all my tests were normal and my symptoms were persistently bad and what happened was I went home from college after I had gone through all that and our family doctor in Walnut Creek, CA was aware of the work Cheney and Peterson were doing with CEBV up in Tahoe at that time.

    I was asked if I wanted to go up there and be tested on and I turned it down.

    The WPI says "
    A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia."

    I believe they are currently seeking fibro-only patients to do further testing on.

    Here is their Website:
    [This Message was Edited on 10/10/2009]