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http://www.drugtopi cs.com/drugtopic s/article/ articleDetail. jsp?id=414450& &pageID=2

Some Lyme patients need long-term drugs

Apr 2, 2007
By: Stacy R. Foltz, Pharm.D.
Drug Topics

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.

I was then referred to a neurologist, who performed tests to rule out several diseases, including multiple sclerosis, lupus, rheumatoid arthritis, and Lyme disease. I did not give much thought to these tests, especially Lyme disease. However, when the results came back, the ELISA result was elevated and the western blot was equivocal. The neurologist referred me to an infectious disease specialist, who ruled out Lyme disease. While other diseases were eliminated, my symptoms continued to worsen. By then, I had been to three specialists; none was able to arrive at a diagnosis. The infectious disease specialist even stated that, if the CBC and C-reactive protein levels were normal, I did not need a follow-up appointment.

At that point, I did not know where to go. After receiving the report of an elevated ELISA and equivocal western blot, I began doing my own research and discovered that the symptoms of chronic Lyme disease sounded just like mine. My primary care physician and neurologist agreed to refer me to a physician who specializes in treating patients with Lyme disease.

The day before my appointment, my insurance company notified me that, because the infectious disease physician had not recommended this visit, I was on my own—in other words, nothing related to this visit would be covered. My husband and I decided to forge ahead. We had to travel 13 hours to reach a Lyme disease specialist, who recommended starting antibiotics by mouth. It was not long before I began to feel better.

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.

An oath is taken by physicians to cause no harm and preserve life. I do not see this happening with this disease. Many are suffering because one small group is controlling treatment and the coverage guidelines of insurers. Physicians should make the patient aware of the risks of long-term antibiotics and let them decide for themselves. Dermatologists are permitted to prescribe long-term antibiotics for acne, but the same practice is too dangerous for Lyme disease? This is quite inconsistent.

If infectious disease physicians aren't going to help, then they shouldn't interfere with physicians who want to help and are willing to get into the minutiae of this illness.

THE AUTHOR practices in a 300-bed hospital in north Georgia. She received her Pharm.D. from Mercer University School of Pharmacy in Atlanta. She resides in Tennessee with her husband and children.
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