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?
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?