 Have Pre-cursor Leukemia EBV related Help! My Story
Since 2013 I have been feeling tired and not myself. Primary care could not figure out why, I noticed my WBC always low. I was told that some people just run low. I had sleep studies given aderall and tried everything to get energy. I happened to have some old medical files I looked at and my wbc on those where normal. I did have anemia also and factor V but the heterozygous type one bad. So I asked primary care if we could look into the wbc thing deeper. He sent me to oncology/hematology where I did the whole blood work up. Only thing not tested was the EBV virus. Well everything came back ok as far as anything bad aside from my wbc was so out of whack I needed a bone marrow biopsy. So did that and had some T-cell/B-cell issues some LGL blasts however gene rearrangement was negative. I was told that this is a watch and wait and get my blood work done every 6 month to a year. Well I got tired of the oncology's statment that it is a reactive process but could not tell me what the "reactive" part was. I went for s second op to another oncologist. He tested me for the EBV and it showed that I had been exposed at some point and it was reacting. That this is the ONLY thing not checked so be believes this is whats causing my cells to react this way. He said again it is a watch and worry now at some point these cells can turn into cancer. He said unfortunately no cure just treat symptoms with lots of vitamins keep my immune system up ect. Well when my oncologist got the second opinion he said we did not check this because most everyone has been exposed and he seems to think this is not whats causing my t-cell issue. And "can not comment" on what the other doctor said. So now I am super confused and just tired all the time. My nodes in my neck swell I do not get fever or anything just chronic fatigue. Just wondering if anyone else has been told they have the EBV that causes cancer and what they have done about it. I need something besides aderall to wake me up and I take b12 shots, get iv iron and otc vitamins. They said no anti viral is needed for me. What can I take other than vit C multi vit and B 12 to help he get thru these terrible days where I cant even get off the couch. I have a family and they need me I feel like a lazy bum because they do not understand how tired you get. IF indeed this is whats causing it. The SO doc said I do have antigens but my cells are non stop fighting this off, the other does not agree this is the cause. So confused!
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