Abandoned

I turned to the Internet and found a physician, Linda K. Bockenstedt, MD, at Yale who was doing research with Lupus and Lyme. It seemed a perfect match. I approached my university rheumatologist who was open to the idea because she knew the doctor. When the referral came to my home, it was highly biased. According to the referral, I had all of the classic symptoms of Lupus including a prominent malar rash though she had earlier discredited my rash as malar. She also said I was suffering from Lupus-induced anxiety. Money was tight. With such a biased referral, we feared the trip would be a waste of time, money and energy.

At the same time my case was painted as classic Lupus, which just a few weeks earlier had been considered atypical Lupus and perhaps not Lupus at all, my Prednisone was running low. I had been taking it for years and my body no longer was able to make cortisol on it’s own. It was life-threatening if I didn’t take it. Neither my phone calls or the pharmacy’s were answered in repeated attempts to seek a renewal. My local rheumatologist said I was a patient of the physician he had referred me to. On my third call to that office, a nurse answered the phone and the office had no choice, but to fill the prescription. Did this mean they were beginning to question my earlier diagnosis, too, especially since, if I did have Lyme, prednisone was one of the last drugs I should be on?

Our family left for spring break in Phoenix to visit my husband's family. The plane ride was excruciating for me. I was hit by a crippling migraine as soon as we ascended. It would not respond to medication and I was in agony until we landed when it almost instantaneously disappeared. While in Phoenix, I realized I had miscounted my Plaquenil, a prescription I normally received from Medco, a mail order pharmacy. I tried repeatedly, along with the Walgreens pharmacist in Buckeye, AZ, to have the rheumatologist’s office call in a prescription to carry me over. They never did. I knew at that point I was on my own. I suspected it was because they feared a misdiagnosis had compromised my health. Wagons were circled, and backs turned. Fearing a lawsuit, they chose to protect their own rather than care for their patient. Somehow, I needed to find a new doctor, one I could trust, to to provide a critical unbiased diagnosis, but where could I safely turn? I debated this question as I wrestled another excruciating migraine flying home.