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EBV results and interpretation

Discussion in 'General ME/CFS Discussion' started by Anana, Feb 15, 2017.

  1. Anana

    Anana

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    I have received my EBV results, as follows:

    VCA IgM: Negative
    VCA IgG: Positive
    EA-D IgG: Negative
    EBNA IgG: Negative

    I have had EBV in 2010. I was getting tested because I have the exact symptoms I have had back then.

    Questions:

    -Shouldn't the EBNA IgG also be positive?
    -If I am having a reactivation, are these tests enough? If not, which one should be done to test for reactivation?

    Thanks guys! I'm panicking a bit because I was relying on this "crash" being EBV and now I'm scared it can be something worse.
     
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  2. edawg81

    edawg81 Senior Member

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    Upstate, NY
    You may very well have EBV reactivation but, it may be subclinical. Edit: I ment to say this is unlikely unless IGM or EA is positive, but still possible.

    Have you considered looking at HH6 and CMV titers? These might produce the same symptoms as an EBV infection.

    Several thoughts. The magnitude of your values are not shown and the units, just the interpretation.
    You could consider doing a PCR test that looks for the virus but for people with ME CFS this is usually negative from my minor amount of experience. I know Dr. Lerner has published a lot of material about EBV titers in ME patients.

    In a normal individual EBNA IGG is usually positive for a past infection but in some cases others do not produce this antibody for unknown reasons, also peoples results change with time. I had a test come back negative for EA and then positive two weeks later.

    As far as your crash its sometimes hard to know. Do testing but take care of yourself and have your doctor help treat your symptoms as best as possible.
     
    Last edited: Feb 15, 2017
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  3. Oberon

    Oberon Senior Member

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    Hi Anana,

    According to this website your results do not indicated an activate infection; rather they indicate a past infection. https://labtestsonline.org/understanding/analytes/ebv/tab/test/

    I understand the panic reaction; and while it could be something worse it could also be something better for you at this stage that's easily treatable. Having similar symptoms may or may not be a coincidence.

    Have you received any other test results back?
     
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  4. Knockknock

    Knockknock

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    Hi Ana,
    Im not as expiriance as many Senior members here in PR, im new to the illness and new to the site, but base in my owned test i can tell you what i was told by my doctor.
    The test that you are showing its the conventiinal test for EBV, its aveilable in USA in most of the comercial labs like Lab corp, Quest etc, but there is certein infectious disease Labs and more especialized Labs tha do EBNA IgG but also IgM, why this test? Becouse what later studies or i guess what some researchers and doctors that have treat ME for many years believe is that even when the virus is not showing active on this test still in a way shading replicating in the núcleo or something like that. I sincerily dont remember how exactly she explained but the for sure she said that the virus waa still replicating.
    I had thesame results in the comercial test that you have, showing past infection, but she was right when the EBNA results come back i had positive Igm, showing the virus was slowly replicating.
    Im sure some will challenge my answere and will ask for a paper publication validated that show that, the answere is no i dont have it, this is what my doctor told me and i can show my results from this especial infectious disease Lab.
     
  5. Knockknock

    Knockknock

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    I was told thesame from my doctor.
    Great recomendation for the HHV6 and CMV, also check mycoplasmas and coxackie.
     
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  6. Anana

    Anana

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    @edawg81 Thank you so much for the reply. I didn't see my lab results. The nurse just told me over the phone which ones were positives or negatives. Would a regular EBV screen have numbers as well? (I often see people refer to the titers/antibodies with numbers.)

    Would a subclinical reactivation feel just as bad as the time I had the primary infection? That's definitely how it feels. Could the PCR test show more than the EBV screen regarding reactivation?

    I will ask to be tested for CMV and HHV6 at my next visit. Thank you so much for the recommendation.
     
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  7. Anana

    Anana

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    @Knockknock Thank you for recommending these! I will definitely get tested on my next visit!
     
  8. Anana

    Anana

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    @lakesarecool That's very true. Stressing will never change the outcome. Thanks!

    Everything came back within normal limit. The doctor didn't order a thyroid panel as my TSH was fine but I'll push for it. Any other recommendations would be appreciated! (I'll get my hands on my lab results soon and post them if anyone feels like checking them out.)

    Thank you again - you're amazing!
     
  9. edawg81

    edawg81 Senior Member

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    Upstate, NY
    Its always good to get a copy of all your labs, its useful in getting second opinions from other practitioners. Each practitioner usually can add some value in interpretation, which was the case for me. All those tests you listed, should have data to go with positive or negative results. As for subclinical reactivation, I'm basing this on my personal experience only, I had intermittent symptoms for years with very high IGG titers, but only recently had active EA showing the more traditional reactivation along with my CFS / ME diagnosis. That said I personally wished I tried antiviral treatment earlier, but I didn't know I had CFS/ME I just had bizarre symptoms for many years. From my understanding PCR is usually negative for CFS/ME patients (for reasons I don't fully understand), as in my case. When CEBV or acute EBV is found in a person without CFS / ME PCR is more often positive. PCR being positive is just stronger proof for treatment, but should not exclude treatment. Dr. Lerner has written extensively and published about all these aspects.

    Here are some resources I have found useful:

    http://www.treatmentcenterforcfs.com (particularly Practitioners guide)
    https://sites.google.com/site/cfstestingandtreatmentroadmap/
    http://www.vitality101.com/health-a-z/when-to-use-antivirals-in-fibromyalgia-and-cfs
     
  10. Kati

    Kati Patient in training

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    Hi @Anana canadian labs do not give out titers unless you are a transplant patient or an HIV patient.

    The thing about viruses is everyone has them. HHV6 and CMV are often contracted in early childhood. all of the herpes viruses stay in the body until you die and in the healthy population, they will reactivate every now and then without the person knowing.
     
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  11. Knockknock

    Knockknock

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    Absolutely but in us seem to be diferent thant in healthy population, interestenly later research in Ms, show that this viruses are strongly associated with MS, when this viruses recombine they give potency to each other via envelope protein.
    This may explain the some times past infections false result while the nucleo of the virus still replicating.
     
    Last edited: Feb 21, 2017
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  12. Anana

    Anana

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    @Kati Thank you for the info! I guess I should say I have never been diagnosed with CFS yet but have had PEM, brain fogand moderate fatigue ever since I had EBV in 2010. I'm having alot of anxiety, which is not helping my case right now. I have been off work for about 6 weeks now and only seem to get weaker and more fatigued. I get out of bed to use the washroom and eat, that's about it. I have seen my doctor and been to ER with nothing but normal results. Being undiagnosed makes it so much harder. Also, I don't mean to complain but I am so nervous about all this. Thank you to anyone who will listen. xo
     
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  13. Mohawk1995

    Mohawk1995 Senior Member

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    @Anana After spending a good deal of time researching during our son's treatment (treated by Dr Lerner), I learned some interesting things about viruses and immunity. @Kati is correct in saying that almost all of us carry certain viruses in our bodies including HHV6, EBV, VZV and more. Most if not all the test I am familiar with look for antibodies (the bodies response to having a viral infection). Problem is the level of antibodies in the blood (titer) is not an indication of an infection or re-activation. That has to be supported by other clinical findings. The same logic can also be applied to Lyme disease.

    So in theory you can test positive and not have an infection/re-activation (false positive) and you can test negative and have an infection especially early on (false negative). This is why the importance of finding a physician who is very good at clinical exam and very good at clinical reasoning and applying the appropriate treatment. These are skills that are learned primarily by experience.

    We did see Dr Lerner for our son's treatment which was successful. He "tested positive" for HHV-6 and later for EBV. Dr Lerner's treatment regimen was primarily anti-virals. Being a Physical Therapist and watching my son go through this treatment, it seems to me that the anti-viral was doing more than just "killing virus cells". This is also the opinion of Dr. Davis's recent report which included some preliminary results of testing the effect of Valcyte on the metabolism of blood drawn from a ME sufferer.

    I think there is a Neuro-physiological affect of some anti-virals either directly or indirectly. For support of this theory, there is support for the use of Amantadine (an anti-viral) in Post-Concussive Syndrome (which looks a lot like ME). I am not saying that viruses do not play a role in ME as I am confident that my son's came on following a viral infection. I am saying that I would view antibody tests with a bit of skepticism as far as whether the results indicate a reactivation is creating a crash. Does not mean you should ignore the symptoms by any means though.

    Research is mounting that ME is a bio-molecular/metabolism dysfunction triggered by any number of insults to the body (Virus, Lyme Disease, Bacterial Infections, Allergic Reactions, Severe Stress/PTSD and others we may as of yet not know). It is accompanied by extreme levels of Neuro-inflamation in the brain and likely has a Neuro-immune/protective response gone "out of control" (maybe a false feedback loop?) at its core.

    Sorry for the lengthy post! Just learned a lot going through this with our son. The good news is it may not currently be related to Viral infections. The challenge is to figure out why the response is triggered and then sustained as well as what we can do to treat the bio-molecular fallout from it and eventually the triggering mechanism itself. You are in very good company here on PR!
     
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  14. Kati

    Kati Patient in training

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    Hi @Anana i understand, and I really feel for you. How to make sense of symptom after symptom that is unexplain by regular medicine, when blood work comes back normal, and when life as we know it is crumbling? It would be fair to say that all of us have been in this position and saying it's unsettling is an understatment.

    I understand the need for answers. After 8.5 years I am still searching myself and it is so disconcerting when my own local doctor is quite happy NOT to be searching (and not doing a whole lot either). It is just as disconcerting to see normal blood results after the other because they don't represent how horrible I feel.

    If you are eligible for CPP or LTD, do make sure that your physician is documenting your current situation, and it doesn't hurt to keep your own journal of symptoms/ what seem to make you feel a little better or worse. That is crucial thing to do.

    You may want to consider consulting with the real experts, the very few in North America who only (or primarily) see ME patients. It may come with a cost (if you can afford it) but validation is a very good thing.

    Know you are not alone. There are so many of us out there confined to their home with this.

    Sending hugs. Take it easy.
     
    Last edited: Feb 23, 2017
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  15. Knockknock

    Knockknock

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    Seems u have it, about pain???
     

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