I take issue with the recent News story downplaying the significance of Lyme disease in Western New York due to the lack of finding enough Ixodes ticks and diagnosed cases in this area. It leads the public to believe that precautions are unnecessary until enough evidence is found to warrant it. This same attitude held back baiting for rabies in the state until it became epidemic.
Lyme disease may not be fatal, but it is a debilitating, systemic disease that warrants attention now since New York State leads the country with 39,000 cases.
I have suffered from Lyme disease for the past three years. I was diagnosed after a tick bite, and was assumed "cured" by my doctor. But after 30 days of treatment on a low-dose antibiotic, the fever, rash and dementia returned within two weeks. Another two weeks of antibiotics was prescribed. Then treatment stopped. The American Medical Association's recommended maximum dosage is four to six weeks.
Despite recent negative tests, my symptoms continued - light sensitivity, back and joint pain, foot arthritis, sleeplessness, irritated bladder, irregular menses, loss of hand function, exhaustion and low red and white cell counts.
Lyme disease is difficult to diagnose and treat. Research has found that in 20 percent of treated patients, resistant bacteria encyst in lymphocytes and tissues where antibiotics cannot attack. Proper testing by Lyme specialists in labs that know what to look for is essential. These specialists treat patients daily, many of whom were improperly diagnosed with multiple sclerosis.
On top of the stress of fighting the disease, we must also deal with the health insurance companies. Thousands of dollars are spent out of pocket without reimbursement because upstate doctors will not refer us to the proper centers for diagnosis.
Lack of knowledge and arrogance stand in the way of proper treatment. There are many others who may have Lyme disease and don't even know it due to inaccurate testing. This leads to false Health Department statistics.