Lyme disease sufferers hope to spur improved treatments

By PENNY RIORDAN, Special to The Bristol Press - 05/02/2005

FARMINGTON -- It took eight different doctors before the ninth one finally diagnosed Randy Sykes with Lyme disease.

In between his first visit and his last visit, he was diagnosed and treated for pneumonia, fiybromyalgia, chronic fatigue syndrome, the beginning stages of leukemia and multiple sclerosis.

Chris Montes had to see nine different doctors as well, and suffer through a few years of thinking he had Meuniere’s disease, restless leg syndrome and the possibility of brain mass.

"What we have in Connecticut and across the country is a pandemic problem whereby patients are being under-diagnosed, certainly under-treated, and moreover misdiagnosed and then sold a line that they are going to have to live with whatever they have," said Montes, the town’s director of youth services and a resident of Unionville.

Connecticut still ranks No. 1 in terms of per capita increases of lyme disease, however, but the process and requirement for reporting new diseases are still flawed, Montes said.

Based on the number of people who show up to the monthly support group meetings, 45, as well as the number of people connected with the group, more than 300, the problem is sizable. Every one of the people who come to the group were diagnosed with something else before they were diagnosed with Lyme disease, Sykes said.

The problem is that there is not an accurate blood test for the disease, Sykes said. Most doctors will treat patients who test positive for it with a few weeks of antibiotics. For many patients, Lyme disease symptoms can persists, as well as dozens of co-infections that a tick bite can leave.

"People can have this cocktail of diseases that get passed on by the tick and they don’t know what they have," Montes said.