Epstein Barr Question

Discussion in 'Fibromyalgia Main Forum' started by PVLady, Aug 31, 2006.

  1. PVLady

    PVLady New Member

    Today I received results of the test for EBV IgG for Epstein Barr Virus.
    The negative result is below 99.
    My result is 3,573!!
    My doctor faxed a consult. request to Dr Chia, an infectious disease specialist here in Torrance, CA
    You can only get an appt with him by your doctor sending all lab work first.
    The doctor said mine was "old infection".
    I knew I was sick for a long time and this just validates it.
    No one ever tested me before, and I have the impression my doctor has not had this with other patients.
    She hugged me and promised to study and learn all she could about it so she can help me.
    I will be seeing Dr Chia also.
    My health feels so fragile these days. Last week-end I tried to travel to Sacramento and had to come home I was so sick.
    Can anyone tell me how bad these test results are?
    There was a stage I am sure I went through when my glands were swollen. I used to have large swollen glands in the arm pit area for years. (I don't have it anymore)
    Thanks for any info...



  2. TerryS

    TerryS Member

    and Epstein Barr is the marker for that and mononucleosis.

    Sounds like you may have had mono in the past (because of the swollen glands).

    My IgG is around 3500 still today. There are several (up to 3) other Epstein Barr values that have to be looked at in order to interpret the results. It could be acute active, old infection, or chronic reactivated depending on all results looked at as a whole.

    Regardless, you definitely either had or have an infection. Mine is chronic/reactivated now. My ENT suggested that I have CFS...however, that's not necessarily true. I will be seeing a rheumatologist next month and he'll be able to diagnose me. If you feel horrible, you may want to see a rheumatologist, also.

    Hope that helps!
    Terry
  3. kimkane

    kimkane New Member

    I had EBV back in thr early 90's. It was horrible. I feel for you.

    I found a great web site that can help you with the numbers about your results...here it is.

    www.labtestsonline.org

    Hope this helps, Kim
  4. PVLady

    PVLady New Member

    My Dr. did run several EBV tests and gave me copies of results.
    She said my results indicated "old infection".

    I actually am better than I was several years ago. I was very sick for several years and did not know I had this.

    I wonder if "old infection" means I am in remission and can get really sick again?[This Message was Edited on 08/31/2006]
  5. PVLady

    PVLady New Member

    Thanks Kim
  6. PVLady

    PVLady New Member

  7. Cromwell

    Cromwell New Member

    As luck would have it, yesterday I listened to a BBC radio program all about EBV. Guess who was on it? Professor Epstein who discovered the virus!!!

    This is the gist. A doctor called Burkitt was working in Africa trying to discover why so many children in that part of Africa where developing disfiguring facial tumors (now named Burlitts Lymphoma) Dr Epstein, then a young researcher, by chance went to listen to a lecture of Burkitts, and got very excited and asked to have samples of the tumors to work with. At some stage, he discovered a virus inside the tumor that was a Herpes virus. This virus became Epstein Barr virus when it was named for him.

    Now, what they discovered at this stage was that every person practically has EBV virus in their system at varying levels of activity and they really do not know why, in the African children, it was producing lymphomas, when it doesn't in the rest of the world. However, they are now able to immediately cure the lymphomas by using anti viral meds injected at site.

    There is some speculation that EBV is a marker for all viral disease, so that although we all have it latent, that when any viral disease is present, the EBV titers will be higher, and, as the other poster said, this is true with mono and other viruses.

    My feeling is that although I had sky high titers when this dd really started to flare out of control,and I was told I had reemergent mono, I did not show any of the mono signs, so actually I think it was this dd showing.

    So many people here have had high spikes showing on the titers. Couple this with fight4cures recent wellbeing after taking an antiviral and I believe that what we may be looking at is the EBV being more than coincidental to detecting our DD.

    The problem often lies though with labs as depending on the lab one can get really "off" results and many redaings are just not accurate. This is because the way they measure this is by diluting the sample repeatedly and the dilution can change from tech to tech depending on not just the care they take, but the pippet they use and other variables.

    My feeling is that I would ask for a retest at another lab, but also not to worry too much about the titers. I will tell you that recently my rheumie told me(quite incorrectly) that the high titers were due to my thyroid disease, which is totally out of order according to the thyroid specialist, as thyroid issues do not affect these titers. So even "experts" make bad calls on the results.

    My other feeling is that if they tested us when we are in really bad flares or other sicknesses then our titers would be showing high then too. So you probably did have some really bad viral illness. Remember some doctors call our DD post viral fatigue still.

    Professor Epsteins talk can be listened to by googling BBC Radio, clicking on 4 and listening again to the show which I think is titled Burkitts.(all free).

    Love Anne
    [This Message was Edited on 09/01/2006]