Lyme Disease: A Diagnostic and Treatment Dilemma
Senate Committee on Labor and Human Resources
August 5, 1993
430 Dirksen, 10:00 AM to 12:00 PM
In the summer of 1989 I contracted Lyme disease. I did not realize it at the time, but this disease has had an unusual and profound impact on my life. After enduring a summer's worth of discomfort at the mercy of a bacterium I became interested in microbiology and immunology. This initial interest has culminated in my working on the immune response to Lyme disease for my doctoral thesis in the department of Immunology and Infectious Diseases at the Johns Hopkins School of Hygiene and Public Health.
During that summer, I was residing in Salisbury on the Eastern Shore of Maryland. I was on summer break from the University of Richmond and was living at home with my parents. To earn money for college, I was working two jobs; one as a waitress in a local crab restaurant and the other as a secretary in a doctor's office.
By the beginning of July I had begun to feel fatigued and suffered from recurrent bouts of malaise and headaches. I ascribed these ailments to a combination of allergies and to "burning the candle at both ends" with my jobs and busy summer social life. I also noticed around this time a large rash on the back of my right knee with a red center and a lighter ring on the outside. It wasn't until much later that I associated the flu-like illness and the tell-tale stigmata of Lyme disease, or erythema migrans, and assumed that the rash was most likely caused by a spider bite. I left work one evening in the end of July because of feeling chilled and because my joints were so painful it was becoming difficult to pick up a pitcher of beer much left serve a whole table. I took some aspirin and went to bed and remained there for a few days too fatigued and sore to even think about moving around. The best description I can think of for the misery of acute Lyme disease is a combination of debilitating mononucleosis and severe arthritis in the knees and elbows. At this time, I noticed more of the strange ring-like rash had appeared on my trunk and lower extremities and decided it was past time to visit the family physician.
Dr. Mary Fleury is our family physician and is an internist practicing; in Salisbury. My symptoms suggested an almost textbook case of Lyme disease although Dr. Fleury was aware of only one other case in the Eastern Shore at that time. I did not remember a tick bite preceding the initial rash but had spent some time earlier that summer on Assateague Island. (A recent study done on Assateague had suggested that the majority of large mammals and Ixodes ticks had contracted the bacteria that causes Lyme disease, Borrelia burgdorferi). During the initial visit, Dr. Fleury suggested that I get tested for Lyme disease and prescribed ten clays of tetracycline. I was tested a week after I had begun antibiotic treatment. Not surprisingly the blood test came back negative, testing procedures tended to be poorly standardized at the time and often gave false negative results especially if done after antibiotic treatment had begun. The diagnosis was then and is now primarily based upon clinical findings.
My condition began to improve with antibiotic treatment and I finished the initial course of antibiotics. However within a few weeks I began to experience malaise, fever, and migratory arthritis again and returned to the doctor s office. She determined that the initial treatment was of insufficient duration and prescribed high levels of tetracycline (one gram per day) for a month. Once again my symptoms began to recede within a few days of treatment and I finished the course with no further relapses.
Thankfully I have not had any further symptoms since the second treatment. However, antibiotic treatment does not always prevent further complications and so I may still be at risk. I am not pleased with the prospect of having to live with chronic Lyme disease and sincerely hope better preventive and curative measures are developed in the near future. As a result of this experience, I have chosen a career in medical science and am currently working on my doctoral thesis at Johns Hopkins studying the immune response to the Lyme disease agent. Such information is essential to the formulation of a vaccine. With continued funding, I hope that this work will move forward and that we will soon have a cure for this perplexing and debilitating disease.