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@chrissy67

I have been ill for many, many years. My PC doctor believes I have two different kinds of autoimmune but can never get a specialist to concur. My symptoms have worsened over the years. Recently I started losing function of both my hands (worse in the right). I was scared and reached out to my PC doctor. He put me on a 1-week dose of prednisone which made me feel significantly better. Unfortunately, after the prednisone wore off the loss of function in my hands came back. I always feel better all over when on prednisone, but you cannot stay on it long term. My PC ran extensive blood work up and told me that my levels on the EBV were "very" high from a past infection. I was infected over 27 years ago, so I was very confused. He told me my body just needed time to heal. I would think after 27 years my body would be healed. I started doing a lot of research and Britian has made a lot of progress with EBV studies as has Hopkins in the US. Unfortunately, most doctors in the US still do not recognize or even attempt to manage EBV or acknowledge the links between autoimmune, certain cancers, chronic joint pain, etc. Even after everything I read and reading bundles of comments from people with levels as high as mine, I still don't understand what is going on. However, the studies done by Hopkins directly linked EBV to certain types of cancer, autoimmune diseases, severe chronic joint pain and thinning of the bones. It puts you at a lot higher risk. My doctor is currently doing some additional testing for myeloma cancer on me. He still has no idea what is wrong with my hands, and I sent him the article about the findings because I have chronic joint pain, and have a lot of symptoms of autoimmune disease, along with a lot of other symptoms that go hand-in-hand with autoimmune. My PC is not interested in looking at the studies from Hopkins on EBV. Sad. I pray we all get answers.

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Replies to "I have been ill for many, many years. My PC doctor believes I have two different..."

My doctor won’t acknowledge EBV is doing something to me. My titers are off the chart and indicate past and current infection. When I question this the answer I get is I just run high.

It’s been over 40 years since I had mono so I don’t understand how I can have a current infection. I’m not offered any treatment. I just live chronically fatigued and worry that this is going to be the rest of my life now. It’s an awful way to live. I’m trying to figure out how to cope with this. It’s scary and depressing. I feel like my life is over.