The Perfect Storm

In 2005, rheumatologists believed I had Lupus because my ANA was so high. The treatment severely compromised my immune system with three drugs, CellCept, Plaquenil and Prednisone. My condition did not improve. It grew worse.

A year and a half ago, I began to question Lyme disease. The symptoms matched. I dug through my bloodwork and of 40 tests, I had never had a positive Lupus test. The protein in my spinal fluid was elevated in three spinal taps with a small number of white blood cells in each. I had a red lacy rash on my skin. I was to later learn I had human parvovirus and Epstein-Barr virus in my system.

My ANA continued to climb. I developed a nasty respiratory infection, made worse by my compromised immune system. Two antibiotic treatments resulted in a normal ANA for the first time in years. I came across a study in the Journal of Rheumatology written by a pediatric rheumatologist who warned rheumatologists to beware of patients with human parvovirus and Lyme disease. Their bloodwork presents as systemic Lupus. A plausible explanation for my ANA.

Though my symptoms were atypical for Lupus, doctors were hesitant to look for other explanations. I had two negative Lyme tests, but later learned that it would have been virtually impossible, due to my compromised immune system, to have a positive Lyme test.

Fortunately, I met an infectious disease specialist who understood the disease. I have been responding well to treatment and no longer take any medications that compromise my immune system. My bloodwork from last week yielded a positive Lyme test!!!

There is a flaw in the treatment of Lupus and Lyme. If the assumption of Lupus is made before ruling out Lyme disease, the treatment of one compromises both the doctor's ability to diagnose, as well as the patient's ability to fight the disease. It is the making of a perfect storm.