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Anyone with persistent EBV IGM titers that dont leave? CAEBV worries

Discussion in 'General ME/CFS Discussion' started by Pyr2, Sep 14, 2015.

  1. Pyr2

    Pyr2

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    Hi, well the title says it all. I started having weird flares 16 yrs ago. At the time they did a test which showed a "polyclonal gammopathy IGM" (usually chronic infection or inflammation) and did a bone marrow biopsy which came out fine but the genetic test showed "lymphoproliferative disease." I was told to "put it out of my mind" b/c my symptoms were resolving. And every few yrs the symptoms would flare and subside.

    Well, since August 2013, I've been flaring - continuously. And wouldn't you know it - still have the IgM.

    The long and short of it is all the research is FREAKING SCARY on CAEBV. Very rare, but basically, most often fatal. And one of the criteria is persistent IgM infection for over 6 months, and other things (lab titers, organ infiltration, etc). On the face I dont meet the lab titers but the bone marrow is concerning. I also had a mitral valve repaired a few years ago - degenerated b/c of ebv??? Now my mind is getting the best of me.

    So I asked my dr today and I was a bit shocked that she was not too familiar with it (she is mainly a Lyme dr.). She did say that she has a lot of patients like me that can't kick a reactivation for months or years. I guess that shows you how rare it is that she had no idea about it. But since its so rare, how does that explain that she has "many" patients with titers persistently. She theorized that it was chronic immune stimulation rather than chronic infection. Anyone?

    She was going to call the guru on this at NIH to see what he says. I can't believe she was clueless about it and Im terrified, honestly. The only cure is a stem cell transplant. My husband says its my own fault for researching too much when the dr didn't even know anything about it, and now I've gotten myself in a dither.

    Anyone else with persistent titlers have the CAEBV convo with their doctor?
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I googled it and there are a lot more symptoms, age and geographic location That determines the dx. I know I'm a hypochondriac so it's easy to go there but there is way more to this than what you have said I think.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776035/
     
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  3. halcyon

    halcyon Senior Member

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    Unlikely, as far as I understand EBV doesn't infect much more than B lymphocytes and pharyngeal epithelial cells.

    Have you had a lymphocyte subset panel done at all? Are your IgG levels abnormal?
     
    minkeygirl likes this.
  4. wastwater

    wastwater Senior Member

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  5. Pyr2

    Pyr2

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    Well good news, she emailed me last night in bold, that after learning all about it she "PROMISED," I did not have it. PHEW.

    No, I have not had any of those tests done. She only does standard EBV levels usually. I see you all posting on Nk cells, CD numbers etc and MHTRH (?) testing and she does not do any of those subsets. I am on Valcyte. She is a LLMD and I initially went to her b/c I do have evidence of lyme exposure so was on antibiotics for a while. But now its looking like its more EBV causing my problems (interesting that you say about the pharangyl cells b/c my biggest problem has been nerve pain the throat area). I may need a dr who specializes more in this. She has more knowledge than the avg dr in this area, but not much. If anyone has a good dr in the NJ/PA area, let me know. I already have one recommendation from the board.
     
  6. Violeta

    Violeta Senior Member

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    Would you mind private messaging me the name of the dr in the NJ/PA that you already have?
     
  7. Billt

    Billt Senior Member

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    My son has similar high EBV virals and I was concerned about the same thing. They tell me the same thing, so trying to put that out of our minds. Pretty scary stuff. That is what happens when we read so much trying to find some type of information that can help. In his case it seems his immune system can't overcome the EBV. Glad your doctor eased your mind. Be Well .... Bill
     
  8. msf

    msf Senior Member

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    The fact that you have had the flares for 16 years suggests you don´t have CAEBV. As far as I know, no one with CAEBV has survived more than a few years with it. I think IgM positivity for EBV and other herpes virusese has been noted before in ME patients, so I think it´s much more likely that you have ME.
     
    Billt likes this.
  9. jess100

    jess100 Senior Member

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    I'm very glad to hear that!
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A bit different to what dr lerner finds as he treats many with chronic reactivating ebv who have been undiagnosed for years.

    I would think with positive igm for a long time that one would be a good candidate for antivirals. If ebv is the only infection than there is a good chance of recovery. This is what dr lerner has found clinically in many of his patients and what he has published in medical journals.
     
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  11. minkeygirl

    minkeygirl But I Look So Good.

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    What are you taking Valcyte for? That's mostly for cmv.

    Usually valtrex or famvir is for ebv.

    Dr Levine is in NY
     
    heapsreal likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If you read through some of the antiviral threads , some with multiple vviruses need more than valcyte. For some it helps hhv6 and cmv but they need to add valtrex or famvir to knock down ebv. For some valcyte alone is enough others find valtrex or famvir more specific for ebv for some reason.
     
    minkeygirl likes this.
  13. halcyon

    halcyon Senior Member

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    @Pyr2 did anyone mention the possibility of some type of hyper IgM disorder? Are your IgG levels normal or no?
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    I had mono from EBV in March & April 2012 and my titers are still off the charts high (IgM, EA, IgG- all of them) like if it's supposed to be under 8 or 9, mine are in the 300 to 500's. There was a point about a year ago that I scared myself to death re: CAEBV but then I somehow got over it and felt that it just did not pertain to me (and am now scaring myself with other things instead :D.)
     
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  15. msf

    msf Senior Member

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    Heapsreal, that is not what CAEBV is - as I said, CAEBV kills you in a very short period of time, ME doesn´t. Lerner´s idea that there is latent EBV replication in ME patients, rather than the active replication you get in CAEBV and Mono.
     
    Billt likes this.
  16. Pyr2

    Pyr2

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    Thanks everyone. No my IGG levels are not normal. And I have CMV too. And I just questioned the same this week - since I have CMV and EBV - why am I not on Valtrex too? I haven't heard back from her. This is why I need to get to a CFS specialist.
     
  17. Abdulrahman

    Abdulrahman

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    Hello,

    Welcome to the Club of Unfortunates....The EBV disease has several variants:

    1- EBV standard mononucleosis, the kissing disease. This is just called EBV meaning Epstein Barr Virus. Not dangerous, the average immune system recovers and it’s gone in about 3 to 6 months maximum as an active infection, very rarely, if ever, returns. You do not have this one.

    2- CAEBV: Dangerous infection causing severe infections and death in majority of patients, but only attacks those with severe immune defects; these are genetic diseases causing weak immune response in a small percentage of people. Many of the patients get cancer as a direct result of this viral attack. You do not have this one.

    3- CEBV: Chronic Epstein Barr virus is a third category, its different in that it is a chronic form of the normal EBV and the cause of its chronic attacks are that its composed of a hybrid or mutant viral strain version of EBV and there are several mutant versions. This powerful virus can attack those with healthy immune systems, but very rarely leads to cancer. It causes Chronic Fatigue syndrome, acting with a host of other Herpes viruses in most instances but can act alone also. You have CEBV. It is very difficult to cure this virus, please research it carefully on internet.

    Please see my contributions on this disease in the below discussion topic:

    http://forums.phoenixrising.me/index.php?threads/little-breakthrough-there-are-different-strains-of-ebv-and-some-cause-cancer.25782/

    Abdulrahman
     
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  18. Pyr2

    Pyr2

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    Abdurlrahman,
    Thanks for responding. I really really want to believe its not CAEBV. Despite reassurance from the dr, I am nervous because years ago (15) I had a bone marrow biopsy that showed Lymphoproliferative disorder (LPD) in the cytogenetics. The bone marrow itself was normal. No PCR was done on the marrow at the time. They all just said, well we really explain the cyto test, but you have a polyclonal gammmopathy IgM - basically an infection. And they sent me on my way. That polyclonal gammopathy is still with me today when I test. Haven't had another bone marrow biopsy, of course.

    Does anyone have any idea why the cytogenetics test would show lymphoproliferative disorder? I guess having CEBV is in itself a LPD. But I keep freaking out that its in my tissues, hence CAEBV. A doctor from NIH told my dr that it would be very unusual to go 16 years without severe disease. My symptoms today are mainly neuro. I have lots of cranial neuralgias going on which would be consistent with a longterm infection. Fatigue is not my main complaint.

    Its almost like having too much knowledge is scary. Wish they never did that cytogenetics test. I am going back to the hem/onc who did that test next week, if anything just for a second confirmation and piece of mind. Im not sleeping because of this.
     
  19. Violeta

    Violeta Senior Member

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    @Pyr2 , A friend's daughter has hand, foot and mouth disease, which is a virus. Doctors told her there is nothing they can do about it. She went back to the nurse who helped her treat her daughter when she had Lyme using Buhner protocol and got some advice, herbs, and probiotics for boosting her immune system.

    You might just need to find someone who views things differently.
     
  20. msf

    msf Senior Member

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    Pyr2. it isn´t CAEBV, you would have died a long time ago if it was.

    It might not be CEBV either, as this is not a recognized disease yet, and there are other things that can cause reactivations of herpes viruses.
     

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