Rheumatologists and ID Docs - May 2009

I make it home by the skin of my teeth.  The day after I arrive I wake up and my face is swollen, rashy, hot and itchy.  My Mom starts organizing doctor’s visits for me.   The first doc we go to see in Philly (fourth doc so far) is Dr. D, an internal medicine specialist and infectious disease doc.  He comes highly recommended.   He looks at my test results from LA and recommends I see a colleague of his, Dr. B., who I actually already have an appt with.  Dr. D. runs tests including another lyme test.  He is obviously brilliant, but is a bit dismissive.  When I tell him my symptoms seem to “cycle,” he says in all his years of practice he has never heard of that with lyme disease.   And when I mention the possibility of a hormonal connection, he completely shuts down.  

 I see his colleague a few days later, Dr. B, another rheumatologist (now doc number five).  His receptionist is condescending and cranky with me, which sets the tone for all of my interactions with this doc.  She is lucky I am so sick and all of the sass has gone out of me.  Dr. B. tells me he knows there is something wrong with me and that he believes me (!), but he doesn’t know what it is.  My Mom just looks at me when he says this and raises her eyebrow.  He orders more blood tests, and an MRI. 

I call Dr. D’s office (the infectious disease doc) and am told the Lyme tests are negative.  I am still feeling sick…I am extremely uncomfortable in my body, my shoulders and back hurt, I am not sleeping still (despite the (Lunesta), I have abdominal pain, I am crying and irritable.  My libido is completely gone.  I can’t even think about someone touching me.  It takes everything I have to just sit on the couch and watch TV.  The fatigue lives in my very cells and muscles.  When I wake up in the morning I dread getting out of bed becaue I know how much it is going to hurt.  I fantasize about stepping outside of my body and getting relief from it even for a second.  I try to go for a walk, because everything I have read about fibromyalgia says that I should try to do so.  I get about 5 minutes in and want to lie down in the middle of the street.  Maybe someone will run over me.  I want to nap for the next 3 months.  It is dawning on me that as a 40-year-old woman with lupus and/or fibromyalgia, children could be out of the question.  It was always something I thought I could do in the future after I became a successful actress.