Accuracy of Epstein Barr Virus testing?

Discussion in 'Testing and Diagnosis' started by TJ_in_UT, May 5, 2017.

  1. TJ_in_UT

    TJ_in_UT Well-Known Member

    Back in 2000 when I had my first big crash, my doctors did two different kinds of tests on me for mononucleosis/EBV, and I was negative on both. Is it likely that I'd have a chronic EBV with such a result? I've heard the talk that there are numerous varieties of EBV that behave differently.
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I'm not an expert but my guess is no. The problem though is that some people think that the standard tests aren't revealing of what's going on with EBV in ME/CFS. (Studies are underway but it's slow.) If you're referring to what's known to traditional doctors as chronic EBV activation - I imagine that you don't fit the picture. Something else is going on in ME/CFS though.
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  3. TJ_in_UT

    TJ_in_UT Well-Known Member

    Thank you for the feedback. It seems to me that our bodies would most likely produce the same sort of antibody, regardless of the strain of EBV. Guess I need to do some more research on what other things could be provoking the inflammatory reaction (especially in my brain).

    Also, thanks for starting this site. It's been a good source of information to me recently!
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  4. Remy

    Remy Administrator

    The Early Antigen part of the panel is how today differentiate a chronic from a past infection.

    But I agree with Cort that the antibody reaponse doesn't seem to be working properly in ME/CFS leading those standard antibody tests to be less than useful for our population.
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  5. Farmgirl

    Farmgirl Well-Known Member

    Hi, I had EBV/mono at age 23. Went for a test while ill, they said it was negative, but being an RN, I was very familiar with the symptoms of mono...back in the day they called it the "yuppy flu". I was surprised at the test result. When I became pregnant, they checked blood tests and the doctor said..."I see you have had mono". Hhhmmm. Poor little bug, it just needed a little time to hunker down and get deep into my cells..make itself a little more get that positive blood test. :p I have high levels of EBV in active form for which I am on antivirals. I have probably been on and off active all these years since and I am 55 now.

    Medicine is not an exact science.
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  6. TJ_in_UT

    TJ_in_UT Well-Known Member

    It certainly isn't. However, at this point, I'm fairly confident that chronic fungal infections are the main factor in my particular case.
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  7. Farmgirl

    Farmgirl Well-Known Member

    Sorry, those are not easy to deal with!
  8. Merida

    Merida Well-Known Member

    As I go along further on this crazy journey, I am coming to think that these antibody tests for specific organisms are useful only to know if we have been exposed to that particular organism. I do appreciate that many of these creatures can reactivate, however, as I saw this happen with my son. He had a well documented case of EBV with specific titers that rose then fell, as he was monitored for a year.
    The unusual symptom that he developed when first sick was severe, sudden onset of extreme urinary frequency. This symptom would gradually get better, but then reoccur if he caught A cold or flu. This happened many times over a period of 4 or 5 years. Can we assume this indicated that the EBV had reactivated when his frequency suddenly jumped up?

    I just had a bunch of these antibody studies and I have abnormally high IgG titers to Mycoplasma pneumoniae, EBV ( including Early antigen), Cyomegalovirus, Herpesvirus 6, and Chlamydophila pneumoniae. Plus the positive Lyme/ Borrelia IgG bands. Geez. Ridiculous.

    After thinking and reading and more thinking, I am inclined to think that my immune system is just nuts - cranking out all kinds of antibodies for everything. An immune system on overdrive. Why????????????

    Maybe Overdrive immune system is a compensation for a leaky blood-brain barrier, or a leaky gut???
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  9. Learner

    Learner Active Member

    From my experience, there's no substitute for having someone with expertise in CFS and immunity looking at your titers.

    My naturopathic doctor had run a bunch of infectious tests and identified 4 infections, HHV6, CMV, and mycoplasma and chlamydia pneumoniae, mostly with high IgG, which increased to high levels while we watched them. We tried a lot of non-pharmaceutical interventions, and while I seemed to respind, it didn't seem to be enough.

    Looking for more brains to help, I went to an infectious disease specialist, liver specialist, rheumatologist, neurologist, etc. who all dismissed my abnormal titers and other abnormal labs, and who all focused in on my low TSH... as I went downhill.

    Finally, I flew 700 miles to a CFS expert, who ran a bunch of labs, confirming the infections my ND had found. He said "I know what we were all taught in med school, but you have those infections." He also found HSV2, which is suspected, and then, surprisingly a hidden case of EBV!!

    Some of us, as research has shown, don't show the typical results for the common EBV labs. I'd been tested at least 4 times with titers of 0. These tests showed sky high VCA and positive PCR.

    My ND had already gotten my insurance to approve IV antibiotics as 2 months of oral antibiotics messed up my gut but had little impact on the infections. My CFS supported this, added Valcyte, and qualified me for IVIG every 3 weeks.

    Though I have a long way ahead of me, I'm improving, and my brain fog has lifted. But health is very important, and that's going to be a project for the foreseeable future.

    I suspect many others have infections their doctors just haven't found. And as any one of the 6 I have can create a lot of havoc, including cancer and auto immune disease, they're worth finding and treating. I'm thankful my ND put me on this path, and thankful I listened to my instinct and not the dismissive and arrogant doctors, and sought out deeper expertise.
  10. Merida

    Merida Well-Known Member

    Please keep us posted. I, too, showed the multiple viral and bacterial high IgG titers - through a naturopath! My infectious disease doc did PCR for my CDC western blot positive Lyme/ Borrelia, but it was negative. He actually was a researcher on the whole C. pneumoniae , and commented that "everyone has had that organism." By the age of 60 at least 80 percent of the population has had EBV.

    Even my paperwork from Quest Labs comments that high IgG titers for many of these organisms may indicate the patient has antibody to the particular organisms, but does not differereniate between past and current infection. Plus, there is much cross reactivity with other organisms - i.e - the IgG tests may not be specific enough to really determine exactly what organisms are currently alive and well and causing infection, and what organisms are under control by the immune system.

    I started doxycycline but stopped due to various problems. But, certainly, some people have gotten well on prolonged antibiotic therapy. Please keep me posted! I am very confused by this whole situation.
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  11. Learner

    Learner Active Member

    I was confused as well, not sure what to believe. And I'm generally not a fan of antibiotics and pharmaceutical interventions, wanting to try natural solutions.

    My expert CFS doc told me to believe them. Before I'd met him, they'd improved with oxygen therapies, artesunate and immunomodulators, but then got worse as my immunoglobulins went down and I was feeling sicker month by month.

    I can honestly say that after 3 months of Valcyte and pulsing IV antibiotics weekly, then adding IVIG, I'm feeling less sick and my head is clearer than its been in 18 months.

    And deep in the literature, my titers match those for chronic, recurrent infections.

    I think my CFS doc is right, that most docs don't know how to properly read them and that many of us have active infections causing symptoms and leading to autoimmunity.

    Time will tell...
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  12. Farmgirl

    Farmgirl Well-Known Member

    @Merida. Hi, I want to respond to you, but I am not feeling so good today. Will try to get back with you the meantime, hope YOU are doing as good as possible! Hang in there, girl, you have a lot going on! :-G HUGS.
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  13. Merida

    Merida Well-Known Member

    Hope you are doing better. I still don't know what to do about trying to treat all these organisms. I really hurt my neck 2 weeks ago and did anti- inflammatories ( prednisone and ibuprofen) for a week. I felt great !!!! And have so far not relapsed to a bad place. So, I keep wondering if it is "just" my immune system over responding to these chronic-type organisms??? Hmmm. B cells that just don't turn off?
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  14. Learner

    Learner Active Member

    Likely the anti inflamnatories helped with inflammation the bugs cause, but likely don't do much to fight the bugs themselves.

    On another note, just got my labs today 3 weeks after my first IVIG. For the first time in 3 years my WBC and neutrophils were high! My immune system is finally fighting!!
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  15. Merida

    Merida Well-Known Member

    This is interesting. How do you feel? I see that IVIG is used to treat various autoimmune, infectious, and idiopathic diseases.
  16. Farmgirl

    Farmgirl Well-Known Member

    @Merida Hi! :). I am not doing " better", but am glad to get on these boards and visit with everyone
    I think our problems are similar. Everytime you tell your story I can relate. I have huge neck issues as well. I am wondering if that has been caused by the viruses?? My whole cervical spine is degenerated and has bone spurs pointing into my spinal chord, so they don't want to operate, but I am loosing function in my arm. Those issues seem so trivial compared to the ME.
    I am hoping your doc will treat your viruses...are they levels high? Mine were positive for 4 viruses. EBV was really high. That is why I am on Valtrex. It is difficult. I know what you mean about steroids...they do help! I am glad you found relief, albeit temporary.
    So....had an echocardiogram for chest pain and a 24 hour Holter. Echo was fine, Holter showed frequent PVCs.SO, they want to do a Stress test, but I will probably refuse cuz my body cannot handle it right now. Dr. Lerner said the Antivirals should help cardiac function, but it may take a year. So, I am in it for long haul. Are you taking Antivirals? I don't mean to be nosy, but I am hoping the best for you! Sending hugs!
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  17. Farmgirl

    Farmgirl Well-Known Member

    What is IVIG?? My doctor I think is planning on putting me on it cuz my immune system is not normal.