During the spring of 2007, I turned to my dermatologist for intelligence and honesty. I was physically losing ground with no clear explanation of why. I had developed a very itchy bump at the base of my hairline and remembered it as the same place that had been itchy and refused to heal for months and months years earlier; a likely spot for a tick bite. It was feared I had both Lupus and Lyme because the ANA was so high. The advice: pack the family up and head east.
The appointment with infectious disease yielded little help. Symptoms were ignored while much emphasis was placed on a positive Lyme test. I tried to explain my concerns about the number of friends who were ill at a field station we attended. Class trips to the Michigan's Upper Peninsula, students and researchers coming from all over the country, all over the world, the chipmunk and mouse populations on campus. His question, “But are they white-footed mice?”
When an article came out just weeks later discussing the explosion of white-footed mice at the field station due to global warming, I sent a copy to their office along with a note, “Yes they are. : )”
I never heard back, not about test results or the note.
At my neurologist appointment, I expressed concerns about a misdiagnosis. To my shock and horror, he repeatedly screamed, “You do not have Lyme disease!"
I managed to walk out of the office in front of everyone who had overheard before dissolving into tears in my car. I vowed never to step foot into the office again.
My sister called. While fighting breast cancer, she had developed a few unexplained autoimmune issues, as well, and suggested I call her rheumatologist. Her general practitioner had been growingly concerned about my health and felt it was imperative I get another opinion. I called her rheumatologist’s office and after a lengthy discussion with the PA was told, “I could head east, but she truly felt my sister’s doctor could help me.”
I had not been working since 2006. Money was of concern. If I were to see this doctor, I could stay with my sister for appointments. I decided to give her a chance. My dermatologist made the referral and the rheumatologist expedited the appointment because my ANA was so high.
I told my story over from the beginning. For those of you who have been in this position, you know just how difficult that is, but this time to a doctor who listened compassionately. The one point my earlier doctors were missing was that I had a family I loved, young children who needed me, and a loving husband. I wanted to get better. I was very ill and she would do her best to help me. She ran a lot of new blood work, with one startling surprise.
My ANA was normal! How did an ANA (1:2560) return to normal in six weeks time, virtually impossible for lupus? I had taken two rounds of antibiotics for a severe respiratory infection and sinus infection, my only change in medications. If my blood work had been elevated because of the combination of Lyme bacteria and human parvovirus, antibiotics knocking down the Lyme would remove one of the two factors necessary and potentially result in a normal ANA. Her lab work indicated elevated human parvovirus, offering further support of the theory. Epstein-Barr levels were also high. Most importantly, I was under a new doctor's care for the next phase of our journey.