I have posted here before. I would love to know your take on those of us with actual polyclonal globulin increase and what it means for treatment.
I have had long term, persistent EBV titers, over 30 yrs. All was well until a "flare" of nerve/pain related symptoms in 1999 which resolved on their own. The investigation from that revealed polyclonal IgM (usually in the 300 range) and a bone marrow cytogenetic result for del4(q21-35) that showed lymphoproliferative disease. The bone marrow itself and flow cytometry were normal and a bone marrow cytogenetic result for del4(q21-35) that showed lymphoproliferative disease. The bone marrow itself and flow cytometry were normal.
I went without any physical symptoms for the next 12 years. However, through the years I developed a positive histone, ANA low (homogeneous), raynauds and anticardiolipin antibodies. But still in very good health and feeling well.
Then, in 2013, the symptoms returned with a vengeance and never left. Lyme dr. says I have reactivated EBV and Lyme.
I dont feel better after a year of treatment. Symptoms worsening.
Rheumatologist says lots of autoimmune markers but you don't have autoimmune disease. You have chronic activation of your immune system. She is referring me to neurologist and immunologist. I already have an ID apptmt next week.
Is this just a fancy way of saying I have CFS/ME? I have polyclonal IgM with normal levels of Kappa lambda but a high ratio (kappa 19.4) (lambda 9). (Ratio = 2.06 high).
Would this qualify me for rituximab or some other treatment b/c I show actual evidence of a problem? Am I part of the Lerner subset? I did start Valcyte 7 weeks ago and feel like hell.
I dont even know who to go to anymore. And the drs say that the lympoproliferative bone marrow cytogenetic was probably artifact but isn't ebv a b cell polyclonal?
Im so confused! I feel like the possible bone marrow invovlement is very significant. Any ideas, thoughts, etc? They say no bone marrow involvement b/c I not tired, all cbc numbers are good, not anemic.
Any wisdom you can shed, I would be SO grateful.
L
I have had long term, persistent EBV titers, over 30 yrs. All was well until a "flare" of nerve/pain related symptoms in 1999 which resolved on their own. The investigation from that revealed polyclonal IgM (usually in the 300 range) and a bone marrow cytogenetic result for del4(q21-35) that showed lymphoproliferative disease. The bone marrow itself and flow cytometry were normal and a bone marrow cytogenetic result for del4(q21-35) that showed lymphoproliferative disease. The bone marrow itself and flow cytometry were normal.
I went without any physical symptoms for the next 12 years. However, through the years I developed a positive histone, ANA low (homogeneous), raynauds and anticardiolipin antibodies. But still in very good health and feeling well.
Then, in 2013, the symptoms returned with a vengeance and never left. Lyme dr. says I have reactivated EBV and Lyme.
I dont feel better after a year of treatment. Symptoms worsening.
Rheumatologist says lots of autoimmune markers but you don't have autoimmune disease. You have chronic activation of your immune system. She is referring me to neurologist and immunologist. I already have an ID apptmt next week.
Is this just a fancy way of saying I have CFS/ME? I have polyclonal IgM with normal levels of Kappa lambda but a high ratio (kappa 19.4) (lambda 9). (Ratio = 2.06 high).
Would this qualify me for rituximab or some other treatment b/c I show actual evidence of a problem? Am I part of the Lerner subset? I did start Valcyte 7 weeks ago and feel like hell.
I dont even know who to go to anymore. And the drs say that the lympoproliferative bone marrow cytogenetic was probably artifact but isn't ebv a b cell polyclonal?
Im so confused! I feel like the possible bone marrow invovlement is very significant. Any ideas, thoughts, etc? They say no bone marrow involvement b/c I not tired, all cbc numbers are good, not anemic.
Any wisdom you can shed, I would be SO grateful.
L