xmrv starting to die out????

Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Mar 22, 2010.

  1. heapsreal

    heapsreal New Member

    there doesnt seem to be much coming out about xmrv, as a cause it seems like its going to slowly disappear due to other studies unable to find it. Seems to be going like hhv6 and valcyte, treating this has helped alot of people but also alot of non-reponders so cant be nailed down as a single cause of cfs.

    I really think in cfs somehow the immune system and some parts of the brain like the hypothalamus etc are broken by what ever infection people may have initially had, be it ebv, hhv6 or some bacterial infection, then we just tend to pick up opportunistic infections. I think thats why some of us have felt better after a course of antibiotics, antifungals etc.

    I have improved alot on antivirals, but still cant shake this insomnia which i think increases general aches and pains. I think something in my neurology(my sleep centre) has been permanently damaged by the viruses i had that caused my cfs. I think everyone with cfs seems to be affected slightly different, maybe due to different infections and severity.

    I just dont think they are going to nail it down to a single cause, chronic reactivated ebv seems to be the the most accurate finding, but so many others out there also where ebv hasnt troubled them. Who 'knows'?????????????
  2. quanked

    quanked Member

    any conclusions (I think). I just heard about XMRV in Nov. of last yr. I am willing to wait longer (like I have a choice, ha-ha).

    I have not heard of any study yet that has duplicated the Reno study--meaning doing the research just as the WPI did. I assume the Reno study did not have any glaring flaws--I think we would have heard by now.

    I understand your desire for some definitive answers. Me too.

    Somedays I feel so trapped by these dd's. Today is one those days. Never mind the pain, the poorly functioning brain and the endless tiredness--at times like these I just wish I could go into some unaware state of mind until this frustration passes. My life needs me to be the other person I use to be--high functioning, get it done, nothing I cannot do-person I know I once was (or was it a dream?).
  3. Svette_Palme

    Svette_Palme New Member

    XMRV excitement has sure died down. I could say "I told you so", but I won't. ha ha ha.

    There was never really any solid evidence. To me, it sure appeared to be more about an excuse to prescribe those "allready approved antivirals" more than solid science.

    The is also the issue of "missing the boat" - where the virus does the damage and then it doesn't really matter if the virus lives in us or not because the damage has allready been done. The antivirals won't do any good after the fact, only prevention of the original infection would help.

    But what about "re-infection" - no, because people infected by the virus will have developed some immunity, so anti retro viral drugs are not needed.

    In either case, anti virals are not usefull. Neither of these issues was considered by the XMRV researchers. It is not solid science, or even logic.
  4. heapsreal

    heapsreal New Member

    i had a lymphocyte subset done about 5 years after ebv/chickenpox infection and they were elevated which my doctor said was probably ebv reactivation, with the av's this has brought these lymphocytes down and improvement in symptoms and when i stop av's i feel crappy, so i think some of us have ongoing infections, but as far as complete recovery mmmmm, i think cfs leaves abit of damage behind. So i think treatment is going to be symptom management eg sleep meds, pain relief, antidepressant for pain and energy etc. Although dr tetlebaum( excuse spelling) seems to be abit of a saleman, i think his book , fatigue to fantastic probably hits the nail on the head, but needs to drop the fantastic for functioning in the name of his book, that would be more realistic, lol.

    I think we have to be realistic and understand that complete recovery probably isnt going to happen especially the longer you have it, but you can make good improvements though.[This Message was Edited on 03/22/2010]
  5. victoria

    victoria New Member

    Most recently in the last month, I think it was a Japanese study that used WPIs methods and came up with positive results. Other 'replication' research didn't use their methods, etc, other problems. It is way too soon. Most importantly, since that research came out of WPI, CDC replaced Reeves with a virologist I believe, or similarly accredited.

  6. aftermath

    aftermath New Member

    Time will indeed tell, but it's certainly not looking great right now.

    When everyone was rushing out to get tested, I urged caution, bringing up the HHV6/Montoya/Valcyte preliminary study.

    That one turned out to be a no-go when the larger, follow-up study was done by the same group.

    I really hope that the WPI folk are right on this one. Still, all of us need to prepare for the fact that we may have jumped the gun.
  7. ladybugmandy

    ladybugmandy Member

    vip and wpi are continuing to find the virus in people....they have found hundreds of positives. they are working with the CDC and the HHS....so dont count them out!
  8. heapsreal

    heapsreal New Member

    Sorry if it sounds negative, i just think maybe theres alot of causes of cfs or it seems that way. I hope they do find an actual cause and an accurate test to diagnose with. Im just speculating that maybe subsets of cfs is right, some have xmrv, some hhv6 and other ebv and some poor unlucky buggers as a few of them. It would be nice to get proper testing and them tell you that u have hhv6/cfs etc.

    I should be greatful i have improved quite abit, im just going through a bad patch of insomnia.

    Glass is half full, glass is half full, glass is half full, lol

    thanks caledonia
    [This Message was Edited on 03/22/2010]
  9. ladybugmandy

    ladybugmandy Member

    hi heap...wondering if you knew about the recent Japanese study that was able to detect XMRV using WPI's methods?
  10. daisies4me

    daisies4me New Member

    Whether XMRV is the 'cause' of most CFS remains to be seen. However, at some point an antibody test will become available and each of us will be able to find out if we have XMRV. As people become tested and dx'd with this, many will drop from the rolls of CFS and onto the rolls of XAND.

    Nothing anyone can say or do will change an XMRV/XAND dx. It is a retrovirus. The research community will continue to work on this, whether CFS is implicated or not. The psych people and their cronies won't be able to do a thing about this.
  11. hopeforcure

    hopeforcure New Member

    Hi, do you know what happened in the larger study Montoya did?
  12. ladybugmandy

    ladybugmandy Member

    yea..its weird. i dont think it was ever published. now that xmrv is found, i wonder if it ever will be.
  13. spacee

    spacee Member

    Wanted to comment that Dr. Cheney says that a herb that the Chinese have used fro 5000 years for malaria has been the best antiviral he has found....Artesunate.

    Prohealth sells a weaker version of it...but do not say it is an antiviral..Artesinins. (I think)

    I have put it in for my automated delivery so I will get it in about a month.

    Cheney said that a family he has a patients (Mother and now adult kids), have all taken
    Artesunate for quite a while. The children tested positive to XMRV but the mother did not.
    He thought that the long term taking of the Art. might have skewed the results for her.

    I at one time was going to be tested for XMRV but have decided to wait and not throw my $400 at it. I have been on Kutapressin and Transfer Factors so long...I could be skewed too.

  14. Waynesrhythm

    Waynesrhythm Member

    Article, by Cort Johnson, published March 26, 2010

    A Light in the Darkness: Good News Ahead for XMRV?

    http://www.forums.aboutmecfs.org/content.php?90-A-Light-in-the-Darkness-Good-News-Ahead-for-XMRV[This Message was Edited on 03/26/2010]
  15. bakeman

    bakeman New Member

    i tried artemisinin in supplement form twice. both times i only lasted 3 or 4 days, it beat the hell out of me both mentally and physicaly. pain insomnia anxiety ect... however, a week later each time i stopped it, i felt really good for a couple of days, actually better than i had felt in years which leads me to believe there may be something to this plant/drug/ sup.