Discussion in 'Fibromyalgia Main Forum' started by Angie812, Nov 21, 2005.

  1. Angie812

    Angie812 New Member

    I'm just curious how many of you have tested positive for EBV. I tested positive for it several years ago when I first started having extreme fatigue, but my doctor doesn't really think much of it. A couple of months ago I was diagnosed with CFIDS. I am curious as to whether or not the both are related somehow.

    LISALOO New Member

    They tend to be together. I however, have always tested negative with CFS.
  3. ldbgcoleman

    ldbgcoleman New Member

    I have active EBV I tested 16 times higher thann normal. My Dr beleieves it is part of the cause of my FM I also tested positive for mycoplasma. I have been taking Famvir for the EBV and Doxy for the Myco and I am much much better! Find Dr who will listen to you and worl with you! Lynn
  4. karatelady52

    karatelady52 New Member

    I too have active EBV. I was told this years ago by a doctor yet nothing was done for it.

    Now that I go to the Fibro and Fatigue Center, I found out my EBV was probably active because I tested positive for lyme disease. I also have 2 other viruses.

    Lyme mimics a lot of illnesses including FM/CFS (which I thought was what I had for years and years), Lupus, MS, ALS and others.

    Like Lynn said, find a doctor who will help you get to the root of your CFS so you can begin to get well.

  5. MaryCecelia

    MaryCecelia New Member

    Yes, I test positive for EBV. I also have fibro, Lyme, & HHV-6.
  6. SolSerenade

    SolSerenade New Member

    I test positive for EBV ... was referred to as "Chronic Reactivated EBV" - however, that's about all I know, other than what I FEEL (pain/fatigue) ........... but, seeing the Dr. tomorrow - maybe this time I'll remember to say "What do I HAVE ?!"
  7. piebear

    piebear New Member

    I test a very high postive for it as well and I have Fibro. Both my Rheumy and regular doctor looked carefully at my blood work though and said it was nothing to be concerned about. I hope thats true.
  8. stinker56

    stinker56 New Member

    Well color me dumb but what is EBV?
  9. tonakay

    tonakay New Member

    Epstein Barr Virus
  10. greatgran

    greatgran Member

    I tested positive and have cfids..My doc just said it was positive and she wasn't surprised, didn't seemed concerned..

    That seems to be the story with my cfids.
    Guess they just don't know what to do..

    You would think if you have a positive virus that they would discuss it further or do something..

  11. Juloo

    Juloo Member

    If you went to a doctor w/active mono, you'd be treated so fast your head would swim -- AND told to go home and rest for several weeks.

    Here those of us w/CFS get the positive for EBV exposure (like 95% of the adult population) and doctors don't do the additional testing to figure out if the EBV is chronically reactivated. Go figure.

    I was very fortunate that I had expanded EBV testing last year and the doctor knew what to do when it came up chronic.
  12. Sandyz

    Sandyz New Member

    I have Cfs and Fm and I tested very high on the epstein bar test. I was never tested for it before until I went to the FFC. They treated me with anti-virals. I haven`t been retested yet to see if it is gone.

    It annoys me too that regular doctors don`t check for this and other latent infections like herpes and mycroplasma infections.

    My regular doctor still thinks FM is just stress and depression and it really annoys me. I am making copies of all my rest results and telling him this is what they find with our illnesses. I might be wasting my time but I hope I can educate him a little bit to take these illnesses more seriously.

  13. ldbgcoleman

    ldbgcoleman New Member

    If you tested a very high positive you need to find a Dr and get help! You are walking around with mono. This can be treated! Your immune system is weakened for some reason and can't fight the EBV. Chances are you have something else going on as well. Please find a Dr who takes this seriously and will help you! Lynn
  14. NIELK

    NIELK Member

    when you all say "tested positive for ebv" do you mean for current infection IGG? or for recent or past infections ?
  15. Juloo

    Juloo Member

    I posted this in another thread a couple of weeks ago, so I copied it here:

    Test: EBV Acute Infection Antibodies/EBV Ab VCA, IgM = 6
    Negative <20
    Positive >19

    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)
    Negative <20
    Positive >19

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


    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 +


    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.

  16. intrigue

    intrigue New Member

    I'll be starting doxy and famvir as well as anti-viral IV's with the FFC.

    My PCP actually diagnosed the EBV two years ago. She just didn't know how to treat it. Finding the right doctor to treat you is key.

    Good luck!

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