Josh Cutler used to work as a network engineer. Now, he said, symptoms from chronic Lyme disease have put him on disability — and threaten his life.
“It’s affected my joints, my heart,” he said. “My last appointment with my cardiologist we discussed having to put in a pacemaker.”
This weekend, Cutler and other Lyme disease advocates will protest outside of the Infectious Disease Society of America conference in Philadelphia to draw attention to the thousands suffering from chronic Lyme. The protest is a part of ongoing controversy around treatment, symptoms and unregulated lab testing.
“Because they’re not accepting chronic Lyme, there are hundreds of thousands of patients that are chronically sick after a month of antibiotics,” said Cutler, who is the executive director of the Mayday Project, the Lyme advocacy group that organized the protest. “They’re basically telling us it’s in our heads.”
There is only one official type of chronic Lyme — called post-treatment Lyme disease syndrome — but not all chronic Lyme patients meet the criteria for that disease. And that is leaving out a lot of people, said Cutler.
Reporter Beth Daley, who has researched Lyme testing for the New England Center for Investigative Reporting, said there’s a lot doctors don’t know, and they may have alienated desperate patients by not having answers.
“[Patients] know they’re sick, but they haven’t been told by the medical establishment what they have, so they look for answers elsewhere,” said Daley. “And sometimes they get better.”
Medical providers offering unverified tests and treatments for Lyme have added to the controversy, she said.
The Mayday Project-led protests this weekend focus on recognizing chronic Lyme and calling for more money to research and treat it.
More than 30,000 cases of Lyme disease are reported to Centers for Disease Control and Prevention each year, triple the number of cases in 1995. The CDC estimates that the actual number of yearly infections could be as high as 10 times the current number reported.
Of all cases reported to the CDC in 2013, 95 percent came from 14 states, including Pennsylvania, New Jersey and Delaware.
In June, Pennsylvania passed a bill to create a Lyme disease task force to focus on surveillance, education, prevention and treatment.