Chronic EPV/Mono

Discussion in 'Fibromyalgia Main Forum' started by OK4tune, Oct 10, 2006.

  1. OK4tune

    OK4tune New Member

    Finally I found a Dr that did not think it was all in my head. He diagnosed me with chronic Epstein Bar Virus/Chronic Mono/Fibromyalgia. I thought things would only be getting better first couple of visits I thought he really understood but by my third visit when I told the Dr that I still was so drained, sore, and tired he told me look you just have to face it you will be a high maintenance patient from now on and handed me another bottle of pills and walked out. I changed Drs.
  2. mrdad

    mrdad New Member


    You did the right thing in finding another Doc. Most
    of them who have beentrained in that tunnel vision of
    traditional medicine "ain't" got a clue on what to do
    about these illnesses. Myself as you are looking for
    alternatives to this traditional close minded approach
    to medicine. Take that different road(s) until you
    find a method that brings you some satisfaction!

    Welcome to the Board!
    MRDAS
  3. deliarose

    deliarose New Member

    you would probably be a good candidate for anti-viral or transfer factor therapy.

    I say if... cos as far as I understand there are no definitive tests to show chronic EBV.

    (altho if u check out a post by Lisa Petrison ..her alt doc came up with some interesting viral/immune panel tests).

    Myu doc suspects I have a stealth virus. I am doing much better on a TF.

    I have only been on it a month tho... and the doc said it wld take 6 months to see a real improvement.

    Check out my other posts if thsi interests you.

    You can also do a search under anti virals to hear about the experiences of others.

    Good luck
    Delia
  4. OK4tune

    OK4tune New Member

    I am not for sure if it is Chronic EBV or not so far I have been told EBV, CFS, Fibro, and unexplained audio immune disorder. Right now I still take several perscriptions and am looking for the right Dr. I have been checking out web sites like this for more info
  5. maedaze

    maedaze New Member

    I also have chronic Ebv. My bloods come back normal like i am not fihgting any virus, and yet when i get the glandular fever test done, it is highly active. Bloods always taken on same day)

    I don't know whether my body has given up fighting it, or it has never recognised it in the first place. I have been fighting (or not fighting) this for years.

    Would i be in a good position to try antivirals? My dr left and the one taken over wants me to find a new one as this is all over her head and she can't be bothered with it.

    So when i do find a doctor who will treat me.. been turned down by 3 so far!!! but when i do find a doc. i'd like to have some info on things to try. And antivirals make sence to me, but don't know if i would be a good candidate.

    Cheers for any thoughts.
  6. Juloo

    Juloo Member

    I've posted this a couple of times before, so I'll grab it and post it again here. These are my results of lab tests -- it is the combination of results of the four tests which indicate an acute or chronic or past infection. (The interpretation follows.) Note -- these results were quite some time ago. As recently as July, my VCA IgG was about 4000. *4000*! I'd have to get it to under 100 to be negative, and I haven't managed that, but I am now in the 2500 range.

    _________________________
    Test: EBV Acute Infection Antibodies/EBV Ab VCA, IgM = 6

    Negative <20
    Positive >19
    (So mine is negative.)
    ___________

    Test: EBV Early Antigen Ab, IgG = Positive Abnormal

    "Positive results suggest recent or chronic-active infection. Anti-EA becomes undetectable weeks to months after onset." In this case, negative = normal.
    __________

    Test: EBV Ab VCA, IgG = >170 (High) VERY Positive

    Negative <20
    Positive >19
    __________

    Test: EBV Nuclear Antigen Ab, IgG = 91 (High) VERY Positive
    Negative <20
    Positive >19
    __________

    Interpretation:

    SUSCEPTIBLE if all 4 tests are negative

    ACUTE INFECTION if VCA IgM+, EA IgG + or -, VCA IgG +, Na-ABS -

    CONVALESCENT PHASE if VCA IgM + or -, EA IgG + or -, VCA IgG +, NA-ABS +

    CHRONIC OR REACTIVATED INFECTION if VCA IgM -, EA IgG +, VCA IgG +, NA-ABS + or -

    OLD INFECTION if VCA IgM -, EA IgG -, VCA IgG + or -, NA-ABS +

    NOTE: + means positive or antibody present, - means negative or antibody absent.

    This information is from the test results from LabCorp.
  7. deliarose

    deliarose New Member

    Clearly, only a doc can tell u if u are a good candidate for this treatment.

    (I misspoke before.. I should have said .. that maybe that woman and her doc shld consider antiviral treatments.)

    All I can tell u, is that I don't test positive for any CURRENT infections, but my CFS was acute onset... following a horrible viral infection...

    And I was Rx'd first antivirals.. Valtrex... then Transfer Factor.. and I am doing soo much better.

    It's early days.. (1 month on Transfer Factor) but the brain fog is really lifting.. I feel so much more normal.

    BUT, it did make me feel more tired and sluggish for a while.

    If you're interested in this treatment, do a search under antivirals.. The FFCs have been using them.

    Check out dr Joseph Brewer at Plaza Medical Center in KC, Mo, for his research on antivirals and TFs.

    FYI< Rich Carson, CEO of Prohealth, is also a TF fan, as is Mikie on this board.

    Cheers
    Delia
  8. maedaze

    maedaze New Member

    Yes i had read somewhere acute onset makes a good candidate so to speak.. But for me it was a slow downslide progress. I didn't quite fit into the 'box' that i read about antivirals.

    I don't quite fit into the 'box' of antibiotic therapy either!!!

    I was just hoping that carrying an active virus might mean this is something for me to try. I just get sick of hearing from doctors there is nothing we can do for you.
    Go home and make the most of what you've got. ( which isn't alot)

    juloo

    How are you getting your ebv under control? Drs tell me i can do nothing about it??![This Message was Edited on 10/11/2006]
  9. Juloo

    Juloo Member

    Sorry I didn't answer sooner...

    As to how I'm keeping the EBV under control, if you can call it that, is that I was on Valtrex for a year, and now I'm 10 months into taking Famvir.

    My antibody counts have come down by about 20-25%, but I still have a long way to go.

    I have Lyme, besides, so I have been cycling through antibiotics as well.

    Don't know if I had this in my earlier reply to you, but my husband also has chronic EBV and Lyme as well. So he is paralleling these treatments as well, but he does not have CFS/FM.
  10. PVLady

    PVLady New Member

    I also have a EBV blood titer of 3,500 shown as "old infection"

    Does anyone have opinion on how I might tolerate surgery. I must have my gallbladder out, hopefully with laparacope.

    I am worried how I will tolerate the procedure, etc.
  11. PVLady

    PVLady New Member

  12. mrdad

    mrdad New Member


    We have your "clothing shops" all over SanFancisco! I
    had an Hernia Operation about 4 years ago and I'm sorry
    now that I didn't donate my own blood for the subsequent
    transfusion for storage prior to the procedure. Would
    not trust the "purity" of the blood supply as I believe
    there are lots of things out there that they don't even
    test for. My transfusion may have been a contributing
    factor for that reason to my CFS???

    As for the operation itself, went easily and was home
    within a few hours. Everyone can be different however.

    Best Wishes,
    JOE