Victims of Lyme disease converge on Albany today for an awareness rally meant to focus attention on the tick-borne disease, that can attack a person's skin, nervous system, heart or joints. Over 95,000 cases have been reported to the New York State Health Department since Lyme disease became reportable in 1986, including hundreds in central New York.
Andy Aiken's ordeal with Lyme disease started in May of 2011, with what looked like a case of the flu.
"About a week or so after he went turkey hunting, he developed a high fever and body aches," said his wife, Tammy.
As summer went on, Andy waved off other symptoms, things like fatigue and headaches. It was early fall when the family from Fabius realized something was seriously wrong.
"He passed out and had almost stroke-like symptoms. He had a loss of speech, and had memory loss," Tammy said.
That began a journey of blood work, scans and physicians as the family tried to find out what was wrong. Some doctors believed it was viral. At one point, a neurologist suggested the symptoms were all in his head.
The Aiken family ultimately had to leave central New York to find help. An initial Lyme disease test was negative, so the family pushed for a second one, and that solved the mystery.
"It was basically a test that checks the spirochete of the Lyme. And my husband had three of the five markers, and we found a physician in Pittsburgh that has been treating Lyme patients for 20 years. He's been on high dose antibiotics since. Marked improvement."
That's one thing you notice when you talk to people in central New York who have Lyme disease, their doctors aren't local. Kristen Schofield, who first tested positive 20 years ago for Lyme disease, and who also suffers from other tick-borne infections, goes to a doctor in New York City. Two years ago, she started up a support group for people dealing with the illness, and when they meet, that was one of their big concerns.
"There are no doctors in central New York who are really, really, clued into how to treat patients, and to look at not just Lyme, but the co-infections as well, and to see it's not a two week dose of antibiotics, it could be something much more than that."
Part of the reason for the lack of doctors, says Schofield, is the fact that it is a relatively new disease, plus there are issues centering on Center for Disease Control guidelines when it comes to diagnosing Lyme.
"It's hard when you're being told by the CDC that these are the things you're looking for and you need these tests, and these tests are coming back negative, it's hard to prove there's enough Lyme in the area to get other doctors to come in to teach," said Schofield.
One goal of today's rally is to call on Congress to support federal legislation to revise those CDC guidelines. Advocates will also call on the state to require insurance companies to cover treatment of advanced Lyme disease, and they'll push for more education for medical professionals about the disease. In the meantime, Schofield suggests central New Yorkers be proactive when it comes to tick bites. Check for ticks after being outdoors, and use insect repellents if necessary, and carefully remove any imbedded ticks.
And don't wait for that telltale bullseye rash before seeking a test for Lyme disease, says Tammy Aiken.
"If we would have seen a bullseye rash, we would have gone to the doctor. But 40 percent of the patients don't get bullseye rash," she says.
Early treatment of Lyme involves antibiotics and are almost always lead to a cure. Chances of that decrease if treatment is delayed.