How Many Here Tested Positive for Epstain Barr Virus?

Discussion in 'Fibromyalgia Main Forum' started by PVLady, Sep 3, 2006.

  1. PVLady

    PVLady New Member

    I would like to know how many have actually had lab tests show the EBV virus in their system. If so, is it active or inactive?

    I recently tested with a level over 3,500 - normal is less than 99. I was told my infection is old. I can believe it because I am not as sick as I used to be. I'm still fighting flares on occasion, but doctors are running all sorts of tests to eliminate any other problems.

    The latest test was a CT Scan of Abdomen with IV contrast. So glad that is over, and anxious for results.

    Dr. started me on Folgard which is B-12, B6 and Folic Acid. It could be my imagination, but I do feel better. My lab results showed signs of B-12 deficiency, including enlarged red blood cells.

    Thanks for the feedback..
  2. TerryS

    TerryS Member

    to see if the virus is old, chronic/reactive, or acute.

    I had cytomegalovirus back in 2002 (epstein barr is marker for that). My current tests show "chronic or reactivated". My EBV Ab VCA IgG level is also right at 3500, the EBV nuclear antigen Ab IgG is 1295, and the early antigen is at 224.

    From what I've read (and I may not be remembering it correctly), that 3500 number will probably be there forever. It's from the acute illness I had (and I was really, really ill for weeks at the time).

    I've felt really tired lately, but nothing like when I had the CMV.

    There's an awful lot of people of this board with positve epstein barr!!!

  3. AnjieCFSFM

    AnjieCFSFM New Member

    I,now,wonder if I could have had it when I was younger and didn't know it!? I didn't know enough about it or think it could be the beginning of my CFS problems. I wonder...could most of us with CFS and FM have links with EBV?...Hmmm...wish I were in a lab and had the know-how to work on it...~*Anjie*~
  4. alaska3355

    alaska3355 New Member

    has tested positive, but it is inactive in his system. So they say.....maybe we should have him tested again.
  5. Leaknits

    Leaknits New Member

    Well, I was told I tested "positive" for EBV.

    I don't know whether it was active, inactive, or if the positive result was because I had the antibodies for EBV.

    Also don't know whether my then-PCP knew or understood those differences between active and inactive.

    I guess I was supposed to be grateful I only had to GET LOUD with him once in my request that I be tested for EBV, and he actually agreed after initially refusing...yes, I actually followed him out of the cubicle in which I had been put to wait for him, and asked him in front of a room-ful of waiting patients why he didn't want to do his job.

    He paid me back for that, though. I had to wait four weeks to find out the results and then he had no interest in telling me anything I could do about it.

    What a guy.

  6. TerryS

    TerryS Member

    but my PCP looks at it and says "it's negative". The interpretation chart is right there on it...he's just not paying attention. my ENT was the one that showed me and said i probably have CFS.

    i don't think my PCP understands Epstein Barr at all.

  7. eva13

    eva13 New Member

    I think that having mono at age 17 is what triggered my fibromyalgia. I'm 33 now, and I've had problems ever since I was 17.
    A little more info about the Epstein Barr virus... once it's in your body, it's there forever.
    If a doctor runs the basic test for it, the test will usually come back as a positive/negative reading if it's dormant in your body. I think the doctor has to do a more complecated test to really tell if you get the virus again once you've had it.

    B vitamins are always good to take (for all women, but especially if you're sick).

    Good luck with all your tests. I'm waiting for results of tests too.
  8. iggyangel

    iggyangel New Member

    Ive tested positive for EBV
  9. PVLady

    PVLady New Member

    I have been referred to a doctor who is an infection disease specialist. His name is Dr. Chia in Torrance, CA.

    Dr. Chia tries to help people with CFS but I don't know exactly his protocol because I haven't seen him yet.

    I am also going to see the nurse practitioner in Dr. Holtorf's office in Torrance, CA. (I live close to Torrance).

    Anyway, I decided to get opinions from both doctors. I see the NP at Dr. Holtorf on Sept 13th.

    I am kind of bothered when I read the Epstein Barr virus is linked to the cancer "Lymphoma". One is Burkitts Lymphoma, and I forgot the other....

    I want to take the best care of myself so all I can do is try.

    Dr. Chia is hard to see but I will make a appt. anyway. Tomorrow I get results of my CT scan of abdomen.

    I started taking a vitamin called FoldX - which is vit B-12, B-6 and Folic Acid. For some reason, the vitamin makes me drowsy. It even says on the label it is a side effect.

    Weird... I thought vitamins always give you energy.

    Thanks everyone for the response.
  10. Theresa

    Theresa New Member

    Hi PVLady,
    I was wondering if you had completed your visit with Dr. Chia yet. I'm curious to hear your results.

    I've been contemplating going to Dr. Holtorf's office as well but I don't want to pay a fortune for lab tests. Are you going to see a doctor there as well?

    I did visit the allergist in the Riviera area a few days ago and she ran some allergy tests. I don't have results yet. She also ordered a CT scan of my sinuses which have been giving me problems lately.
    Take care, Theresa
  11. sues1

    sues1 New Member

    I was diagnosed with Fibro and later Cfids...I was still in denial of it and trying to find the "Cure". My Dr. retired.

    New Dr. wanted to run tests and did. When I saw him afterwards he said that there was no such thing as CFIDS, that it was a garbage can Syndrome.

    He then added that I'd had Mono, but no longer had it. I was healthy but I just did not want to work. He threw a book and yelled that Americans did not want to work.

    I left in tears and never found out more on the Mono.

    Later I read for the first time on EBV aka Mono, at that time it was thought to be part of CFIDS.

  12. Lolalee

    Lolalee New Member

    Hi Pvlady,

    When I was diagnosed with CFIDS about 8 years ago, I tested positive for Epstein Barr. I don't remember if it was active. I was so fortunate to see Dr. Patricia Salvato in Houston. I've had such awful luck with doctors that I don't know if I would have gotten a CFIDS diagnosis otherwise. She ran a whole panel of tests that showed abnormalities in my NK and T cells as well.

  13. chris350

    chris350 New Member

    I had the virus in my teens. When I was diagnosed with Fibro in 2003 I was active epstein as well. B12 injections is about the only medicine except rest.
  14. Hootie1

    Hootie1 New Member

    I tested positive for old and current
  15. Cromwell

    Cromwell New Member

    You may have missed my post back to you regarding actually listening to Professor Epstein himself say the following:

    He first identified the virus when looking at Burkitt's Lymphoma patients biopsies after asking Dr Burkett for these samples.

    Burkitt's Lymphoma is only found in African children from certain regions and is now 100% cureable and treatable with a simple injection. It is rarely, if ever, a problem in the USA.

    Professor Epstein himself has assured us that the virus he identified is present in practically ALL of the population and earlier studies suggesting it was unusual to have this present were innaccurate and misleading. However, when people are sick with OTHER immune disorders, some of which make us very sick (for eg mono is one) because the EBV virus is seen in greater titers then, people mistakenly were dxd with "EBV" rather than the disease itself. Cher is an example of someone who was thus dxd. She was sick for years but the very active EBV was just showing some other immune dysfuntion(maybe CFS?)

    When they measure titers they do so by dilution so what may seem an alarmingly high number is really this: They take a sample and look for the virus, then keep diluting that sample to see if they can still ee it. The last they see will be equal to that titer. Labs vary tremendously on their accuracy in doing this.

    Finally EBV is one of the herpes family. Hvaing a cold sore can push your titers up.

    I hope you find this information useful as it came straight from the discoverer himself.

    Love Anne

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