Lyme disease on the rise, but some complain about lack of medical support

Jul 25, 2017

There is an increasingly vocal group in Western New York. Its members are suffering from Lyme disease or are family members of those with the tick-borne disease. They packed an Erie Community College South auditorium Monday night to complain they are not getting the help they need.

Two certainties came out of the meeting sponsored by New York State Senator Chris Jacobs and Lyme Western New York: Lyme disease is in Erie County, and there were probably a lot more than the Erie County Health Department's figure of 55 cases last year.

An auditorium at Erie Community College South was full for the public forum on Lyme disease.
Credit WBFO's Mike Desmond

"2017 was going to be a huge tick year and that relates to the ecology of Lyme disease, where two years ago there was a huge crop of acorns. Then, the next year there's a huge crop of rodents, small mammals and that's where the disease is harboring. So if you have a lot of acorns, you have a lot of mice, then you have a lot of food for those ticks and so your incidence of disease is going to increase," explained Matt Frye, an integrated pest management expert from Cornell University.

Jacobs said this year's state budget is putting up a small amount of money to start research and education with the thinly understood disease that has become an increasing problem in the Northeastern United States.

Speakers said they cannot get help from their insurance companies to cover potential years of medicine needed to treat the disease. They also have trouble finding doctors who want to deal with the disease and know what they are doing.

Drea Dole was originally diagnosed with multiple sclerosis. Dole said she went from busy all the time to unable to be busy anytime.

"After being taken out of work for over a year because I was unable to keep my oxygen above 85," she said. "I couldn't work. I couldn't exercise. My husband had to help me to the rest room, to bed. It was just a really bizarre thing where I was going to grad school, working full-time, doing internships and then one day I couldn't even dress myself."

Although re-infection is possible, one area where the disease can be cured is with animals like dogs and horses - sentinels that the disease is around. They can be treated with medicines not available for human treatment. However, sometimes veterinarians fail to properly diagnose the disease. Additionally, because animals cannot audibly complain, diagnosis may come very late when the physical debilitation has set in and treatment will not be effective.

"My vet says, 'Oh, he blew his patella, we're going to have to do surgery.' And I was like, 'We're going to get a second opinion on that,'" said Cassandra Guarino, an extension associate for serology/immunology for Cornell's Animal Health Diagnostic Center. "And so I actually went to a fourth-year vet student at Cornell. And those vet students, they learn a lot. They're all right up on the new and the fresh. And, sure enough, this student says, 'I think he's got Lyme Disease.' We tested him. He was positive. Got him started on his doxycycline and within three days, his lameness went away."

The number of confirmed and probable Lyme disease cases in the U.S. more than doubled from 2001 to 2015 (denoted by the blue). In 2015, 95 percent of confirmed cases were reported in the 14 states shown.
Credit Centers for Disease Control and Prevention / National Public Radio