More research, better diagnostic testing and more uniform treatments are needed in the battle against Lyme disease, two congressmen said Monday.
The tick that carries Lyme disease and other infectious diseases has moved into upstate New York in recent years from Lyme, Conn., where the illness was first identified in 1975.
U.S. Reps. Chris Gibson, R-Kinderhook, and Paul Tonko, D-Amsterdam, said more needs to be done immediately to understand and treat the disease.
The two congressmen representing large parts of the Capital Region spoke during a break in Monday’s forum on “Tick-borne Diseases — What’s Next?” held in Skidmore College’s Frankel Music Center in Saratoga Springs.
More than 500 people registered for the daylong event, which featured national experts on Lyme disease. Gibson was the forum’s honorary chairman.
It is believed that Lyme disease has reached epidemic levels in sections of the country, including the entire Northeast, according to infectious disease experts.
Lyme disease has a variety of symptoms and can sometimes be difficult to diagnose. It is transmitted by the bite of an infected tick but symptoms may not occur until months after the bite.
Tonko and Gibson said during a news conference outside the Frankel Music Center that $8.7 million was included in the fiscal year 2012 federal budget for the Centers for Disease Control and Prevention to study various aspects of Lyme disease, including better diagnostic testing, reporting, and long-term treatment issues.
“My studies of the subject have revealed not only the unpleasant realities of the disease and their impact on victims, but also the confusion and divergence of opinions surrounding the identification, understanding and treatments of the diseases that are appearing with ever-increasing frequency in all of our communities,” Gibson said in an introduction to the forum.
Gibson and Tonko are seeking congressional approval of a Tick Borne Advisory Council that would coordinate identification of Lyme disease and other tick-borne diseases and determine the best treatment routes for the medical community to follow.
“It’s a major issue that warrants the type of attention [given during the forum],” Tonko said.
Tonko said he’s a “big believer” in research that could lead to a preventive vaccine against Lyme disease.
Dr. Daniel Cameron, who has a private practice in Mount Kisco, was introduced as a pioneer in Lyme disease research. Some of his patients were among the about 200 people attending his talk Monday afternoon at Skidmore.
He outlined some of the confusion and debate about chronic Lyme disease. A portion of the medical community believes that an appropriate dosage of antibiotics will kill the Lyme bacteria in a person’s system.
Another portion of the medical community believes that if the antibiotic treatment is insufficient, the bacteria “learns” to resist the antibiotic and morphs into a chronic form of the disease.
Angela Tolan of Saratoga Springs, the mother of four young children, said she went to a local urgent care center in July 2011 and was told that a bull’s-eye rash on her skin was not a tick bite but an ingrown hair.
She started developing Lyme disease symptoms, including loss of memory.
“I thought I had a brain tumor,” she said.
Finally, after more tests, she was diagnosed with Lyme disease and is being successfully treated after going through months of trying, humiliating misdiagnoses.