Some Lyme patients need long-term drugs

April 2, 2007

This is the story of my bout with Lyme disease and what a harrowing experience it's been. I hope that by telling my story, I can help you learn from my experience and apply it to your practice.

I've been a pharmacist for almost 20 years and have been very healthy all my life. About three years ago, I became ill quite suddenly. I developed accelerated hypertension, severe headaches, facial numbness, arm weakness, brain fog, and a persistent flu-like feeling I could not overcome. As time passed, the symptoms worsened and fatigue set in. My primary care physician ran several tests, which all had inconclusive results.

Today, after three years of antibiotic therapy, I am approximately 80% better. My husband and I cannot even begin to imagine what my health would be like if we had not sought help outside our state.

I held our healthcare system in the highest regard until this experience. When a diagnosis is straightforward, treatment is easy to obtain. But if the diagnosis does not fit in the box of the accepted guidelines, you are on your own to get help. Before this illness, I would have totally agreed that the use of long-term antibiotics is ill advised. But taking antibiotics gave me my life back.

I disagree with the Infectious Diseases Society of America (IDSA) guidelines, which advise against prolonged use of antibiotics for Lyme disease. In fact, the Lyme Disease Association and the International Lyme and Associated Diseases Society have asked for a retraction of the guidelines. And the Connecticut attorney general is investigating IDSA's guideline development process.

I realize there are charlatans who take advantage of people and their health situations, but there are also very intelligent, caring physicians who are willing to think outside the accepted guidelines. To refer to them merely as "Lyme docs" sounds quite disparaging. It seems very unfair that one group of experts can control the health care of so many with their guidelines and that insurers would base their decisions solely on their recommendations. Aren't we supposed to treat the patient and not the lab values? The practice of medicine is an art and not an exact science where everything falls within certain guidelines.