Who has had postive chronic/recurrent Epstein Barr panel?

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Aug 28, 2006.

  1. TerryS

    TerryS Member

    My ENT suggested CFS due to this...I have other abnormal lab work, as well.

    Just wondering who else may have this show up in labs.

    Terry
  2. findmind

    findmind New Member

    Yes, Terry, I've had CFS for 18 years, and my EBV panels do show up positive when I feel especially ill.

    It's just one of many reactivated viruses and/or bacterial infections that are rampant in people with CFS (PWCs).

    I'm sorry you have this, but if you are new to cfs, you may want to look at either Storymyskye's or Mikie's posts: enter their names in the search option by Username (one at a time).

    Attacking this illness early is the key to beating it back, so I hope you find a treatment plan that gets you well!

    Also, you may want to search the FFC (fibro and fatigue clinics) here and by google also. They are treating people with a serious protocol and many are getting well.

    Good luck to you...
    findmind
  3. TerryS

    TerryS Member

    Are you telling me that my EBV has actually been reactivated??? And that, in the future, the values will go back to normal and only show old infection???

    Terry
  4. Marta608

    Marta608 Member

    Terry, I'm not Findmind but yes, EBV can be reactivated. I began CFS with EBV, it went into remission, then two years ago I was down for almost two months with another hard bout. Having it show up as a past infection doesn't mean you'll have a full-blown infection again but you could.

    Nuts, right?

    Marta
    [This Message was Edited on 08/28/2006]
  5. TerryS

    TerryS Member

    My PCP looked at the lab work (which my ENT read as positive - at 3500 - positive being over 120) and said "well, that's negative". Although, the interpretation chart was right there, and the lab company even put "chronic/recurrent infection". I think my PCP thinks that it is just showing my old infection.

    Regardless, I just wanted to understand if the cytomegalovirus could come back on me...because that's about how I feel...not as bad as in the acute stage, but more like I'm in early recovery from it.

    TERRY
  6. Kimba4318

    Kimba4318 New Member

    is there treatment for the EBV or the CMV? Wondering if there is hope that someday I may feel better... I sure hope so :-(
  7. SPR30

    SPR30 New Member

    Me too..when I was dx with CFS/FMS in 2002 my tests showed that I had EBV in my blood. I get recurrances of it and my dr took blood once when I was feeling like it was EBV, sure enought my white count was up, so yes, some of us have recurrances of EBV, we just never get over it.
    This is all sounding surreal isn't it? My dr listens to all I have going on, I am very happy to know I am very ill, RA and other stuff too and these sick spells are really EBV flareups too...not just swollen glands and fevers that accompany CFS but really active illness.


  8. bunnyfluff

    bunnyfluff Member

    of EBV. My titers were off the charts. I felt horrible, and couldn't figure out why, and had an enlarged spleen to boot.

    The Dr did a blood test to Dx, and I had an active case, but it showed as a reactivation of an old infection. This is a hallmark of CFS, and earned me my diagnosis to add to my FMS.

    So far this year it has not come back, but I have been feeling sort of badly lately, and wonder if that could be why. Might be time for a re-check.
  9. ldbgcoleman

    ldbgcoleman New Member

    mine was treated with Doxyclyclene and I am much better. You should also be checked for hypercoagulation. Good Luck figuring out the root causes is a good first step! Lynn
  10. findmind

    findmind New Member

    To answer your question to me:

    The way I understand it, you have mono, with elevated EBV titers, it is self-limiting and you recover.

    Something in your immune system fails to keep it in check, and you get reactivated EBV, which can then become a "chronic" condition. That can be one of the symptoms for a diagnosis of CFS, even though I don't think it is listed on the CDC website as one that a dr. can use all alone to make a diagnosis.

    If this is your condition, you might ask your dr. for Valcyte or valgangciclovir, for if attacked eary, you may get back to your old self.

    Hoping you find some answer for yourself,

    There's always hope,
    findmind
  11. TerryS

    TerryS Member

    I never quite recovered fully from the CMV. Lots of sleeping, low energy, pain in the extremities. But this last 15 months or so have been especially rough.

    We took a two-week cruise last year (WONDERFUL) to Scandinavia, Russia, Eastern Europe. I did go out at every port, but pretty much stayed in my room and rested when we got back on the ship. My husband and daughter enjoyed and ship activities...and every time I turned around, there was another darn "show" going on that they wanted to go to!!! The ship was full of elderly people and darn if they didn't seem to have a lot more energy than I did!

    Went to Florida for three days this summer and spent the whole time lying on the bed or sitting on the balcony watching the ocean. I enjoyed not having to work and getting some rest...but I'm afraid I wasn't much fun.

    WHAT IS VALCYTE???

    Terry
  12. mrdad

    mrdad New Member


    Valcyte is an anti-viral in a family of anti-virals that
    is being increasing used for (in many cases) "relieving
    symptoms of certain viruses and I believe Mono is one of
    them. There is a DR. Montoya at Stanford who has used it
    on a Middle Aged member of my support group who has had
    CFS for well over 20 years. He experienced 70% inprove-
    ment in a short period of time.

    Montoya is or is preparing a more conprehensive study
    of the Med and protocol for it. Hopeful sign for many of
    us I hope!! My Doc is looking into it for me.

    "Talk Later"
    MRDAD
  13. findmind

    findmind New Member

    Put it in search engine here....

    Thanks, MrDad for filling in for my loss of brain cells, LOL!

    findmind
  14. Kimba4318

    Kimba4318 New Member

    just told i had CMV & EBV.. and some others on top of the FM...

    Are you all in alot of pain in your muscles and joints? Do you take an pain meds?

    Am I crazy for feeling this much pain??? Have random stabbing, fire like pain and the all over muscle pain and spasms....
    Just wondering if I can show this to my pain doc to feel a little less crazy !! Last time I asked if all of this could be caused by FM (before I had these results) and he said "NO, not like this" but treated me anyway... I just wanted to know if this would help him understand what I am going thru a little better - feel NUTS sometimes (well, all the time).

    Hugs :)
    Kim
  15. mrdad

    mrdad New Member


    I don't think I have FM but I do have CF. Have muscle
    aches and joints with different degrees of intensity at
    variable times. Morning seems the worst for me. I take
    Ibuprofen as needed as I have a liver disorder and can't
    take asprin. Almost constant "brain fog" but it also
    can change in degree.

    We're here to help if we can! OK? (Isn't that scarey)!!
    MRDAD
  16. spacee

    spacee Member

    There are always more than one way to look at CFS. I have had eleveated (and I mean high) EBV titers for 20 years. And, so far, NOTHING has brought them down. Not:

    Kutapressin for 16 year which is antiviral specific to EBV

    Acyclovir nor famvir or that other V....one that I can't think of right now. Not the one already mentioned.

    Immune Transfer C which is specific to EBV.

    When I was first diagnosed CFS was called Chronic EBV and I was given a brochure to read about it. Then the medical field discovered that OTHER illness caused chronic elevation of EBV, so they quite printing that brochure and scratched their heads.

    So, some of us have titers that go up and down and some don't. Or least I don't.

    It's a mystery to me.My doctors too. And one is a big time Infectious Disease doc.

    Spacee
    [This Message was Edited on 08/29/2006]
    [This Message was Edited on 08/29/2006]
  17. iggyangel

    iggyangel New Member

    I have a positive EBV.
    and mycoplasma P.
    iggy