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Positive EBV IGM. Reactivated? Or is it lyme?

Discussion in 'General ME/CFS Discussion' started by Sherezade, Jul 27, 2014.

  1. Sherezade

    Sherezade Guest

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    Hello all,

    Still looking for answers here so I went to a new doctor and after hearing all my symptoms she told me it could be a chronic infection. Really!? Never went through my mind jeje

    Anyway, she ordered serology for EBV and CMV which I did but i kind of knew the results already. I am negative for CMV and i have positive IGG for EBV because i had Mono in my teens. The surprise this time is that i got IGM positive for EBV! What!? Two years ago, when i did my first tests the EBV IGM was negative.

    So, this could mean that my inmunological system is down and the EBV reactivated? I have read that there's a connection between lyme disease and reactivated EBV, but i did the IGG IGM test for lyme and it was negative. I guess that should be enough to rule out lyme?

    If i have reactivated EBV should i take antivirals like valtrex? I have another appointment with the new doctor in two weeks, but i would like to read your opinions before. As you know i don't trust the doctors anymore, because i have been called hypochondriac too many times by them.

    Thank you!
     
  2. maryb

    maryb iherb code TAK122

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    @Sherezade
    to mix it all up for you:)
    I've had EBV re-activated (IgM positive) 3 times in the past 7yrs, also negative at other times. Recently tested positive for Lyme. I don't think the docs know what's going on either.
     
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  3. soxfan

    soxfan Senior Member

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    When I was tested for EBV my Lyme doctor did four tests. They were VCA (IgG) ,VCA (IgM), EA-D (Early Antigen) and EBNA. I was told by him that the EA is the important one since that one determines whether it is reactivation.

    I had extremely high titers to EBV but because the other tests were negative I was told it was a previous infection and not active.

    It has been a while so I am hoping my information is correct. You can look online about testing for EBV and I think it will give you information.

    The Lyme tests are very unreliable. I have been tested several times and had some antibodies positive but not enough for a "Positive" test. I was treated for 3 years and my Lyme symptoms did finally go away.

    Unfortunately I believe I am left with permanent nerve damage from the original infection...plus I have chronic fatigue and many other CFS symptoms....
     
  4. maryb

    maryb iherb code TAK122

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    @soxfan
    What treatment did you have for 3 years? was that for Lyme?
     
  5. soxfan

    soxfan Senior Member

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    @maryb- yes it was for Lyme and Bartonella
     
  6. Valentijn

    Valentijn Activity Level: 3

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    It sounds like the standard Lyme tests only look for one type of the bacterium which can cause it. But you might have been exposed to a different variety. I'm not sure where you are, but infectolab in Germany has an Elispot-LTT test for Lyme which seems to test positive in reaction to various types of Borrelia.
     
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  7. Sherezade

    Sherezade Guest

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    @maryb thank you for your input. So, maybe it is true what i read about the EBV reactivation and the connection with lyme. I am going to talk about it with the doctor, I just hope that she is open minded about it.

    @soxfan in the tests i did two years ago included the four that you mentioned. The only positives were IGG and very high EBNA which was a clear indication of an non active past infection. But now with the IGM positive i guess is a reactivation.

    @Valentijn thank you. Unfortunally i am in a south american country, and with limited resources in the medical area. So, this kind of special tests are totally unknown in this jungle. But i am willing to send my blood to get tested in infectolab, i am going to find out if there's that possibility.

    I missed an appointment with Dr De Merlier past january, now i regret for not going while i was in the UK. I didn't have the money for the tests he would order. But now i wish i had gone, i am not getting any better :(
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if i had my time again i would take antivirals alot earlier.
    Antivirals like valtrex are safe medications, but its up to you and your doc.
    I just think the earlier the better, i think if left for a year or 2 before going on them then it gets harder to treat. Some get better on their own but theres know way to know if you would be one??
     
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  9. Sherezade

    Sherezade Guest

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    @heapsreal thank you, could you give me some idea of the valtrex protocol? Because if the doctor refuse, i can buy it in the drugstore and take it by myself. Yes, i am that desperate...
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    dosages vary from 500mg twice a day to 1000mg 4 times a day. there is know hard and fast rule, aim for the middle 1000mg twice a day, good place to start. Consider famvir, a common dose is 500mg twice a day, i myself use 250mg twice a day.

    I would try to get some nk function testing done as back up for when docs say igg means nothing, u can say back to them, well my nk function sux so these viruses are bound to reactivate, so stick that in ya pipe and smoke it??

    I think if all you have is ebv and neg to cmv/hhv6 and no other bacterial infection, then y have a great chance of improving.
     
    SOC likes this.
  11. Sherezade

    Sherezade Guest

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    @heapsreal thank you, by the way, i haven't tested HHV6, do you happen to know what other name they use in the laboratory for that virus? I have been through the list of test they offer and i can't find it. Is it roseola or rubeola perhaps?
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    [quote a Sherezade, post: 487366, member: 6617"]@heapsreal thank you, by the way, i haven't tested HHV6, do you happen to know what other name they use in the laboratory for that virus? I have been through the list of test they offer and i can't find it. Is it roseola or rubeola perhaps?[/quote]


    No sorry @SOC may know more about this.
     
  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Sherezade Not sure if this will be helpful but I just got all my test results yesterday and was high positive for EBV on four different tests including IgM and early antigen but I do not have Lyme so the two are not necessarily connected.

    As far as HHV-6, I believe that is the name of what you get tested for and have never heard of it by another name?
     
  14. SOC

    SOC Senior Member

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    HHV-6 is also called roseola.
     
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  15. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Oops, I didn't realize it had another name!
     
  16. SOC

    SOC Senior Member

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    Few of us use it because roseola is actually the illness caused by the first infection by HHV6 in infancy. Reactivations don't (or at least not usually) cause roseola. So roseola is one of the illnesses caused by the HHV6 virus. It's just like the first infection with HHV3 (aka varicella, aka VZV) is called chicken pox, but reactivations of it cause a different illness -- shingles. Neither of those illnesses (chicken pox, shingles) is the virus itself. Both the illnesses and the virus have different names.
     
    Last edited: Jul 30, 2014
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