Brooklyn teenager Julia Bruzzese never imagined she’d be going to high school in a wheelchair. New Jersey cop Margie Raimondi still can’t believe she’s not on patrol. Manhattan singer-songwriter Dana Parish feels lucky to be alive.
From different walks of life, all three say they are victims of Lyme disease, an often debilitating bacterial infection spread through the bite of infected ticks. The News 4 I-Team found they’ve also been caught, to varying degrees, in the middle of wars raging in the medical community and government over what’s become a public health crisis.
While approximately 30,000 cases of Lyme disease are reported annually by state health departments, the Centers for Disease Control (CDC) estimates “the number of people diagnosed with Lyme disease each year in the United States is around 300,000” – with most cases in the northeastern U.S.
Lyme is the fastest growing vector-borne infectious disease in the country. See how many cases are in your county using the interactive map below.
Despite the surging number of cases, there’s bitter disagreement in the medical community over who actually has Lyme disease – and how to treat it.
“People called us crazy. People called me crazy,” 14-year-old Bruzzese says of her odyssey through the medical world, when doctors were unable to find a reason for the numbness in her legs, and her fevers, joint pain and fatigue. “They would try to convince me I was making it up.”
Not all ticks can transmit Lyme; some can transmit other potentially dangerous infections as well. Use our interactive tick identifier to see which insects -- and which symptoms -- may be cause for concern.
Doctors also ruled out Lyme disease because her blood tests did not detect Borrelia burgdorferi, the bacteria that causes it.
“The science is there that the testing is unreliable,” says Dr. Richard Horowitz, who eventually became Julia’s doctor and determined through clinical diagnosis that she was suffering from what’s commonly called chronic Lyme. “Lyme is known as the great imitator. It can look like lupus. It can look like rheumatoid arthritis. It can look like multiple sclerosis. It can cause psychiatric symptoms.”
It’s a view shared by the 650 doctors who belong to the International Lyme and Associated Diseases Society (ILADS). The group believes Lyme disease is hard to diagnose and treat, can hide in the body and often requires treatment with long-term antibiotics.
But much of the medical community scoffs at that.
The Infectious Diseases Society of America (IDSA), which has 11,000 doctors in its ranks, says Lyme disease can be diagnosed with tests approved by the Food and Drug Administration (FDA) and most patients can be cured in 10 to 28 days with antibiotics. Long-term antibiotic treatment, IDSA says, can be damaging to patients.
IDSA’s guidelines, which are followed by the CDC, say patients like Bruzzese who do not test positive with approved tests are suffering from a “different or new illness” –- not Lyme disease.
“In terms of the patients I see referred to me for chronic Lyme, a lot of the patients don’t have any evidence of ever having had Lyme,” says Dr. Gary Wormser, chief of infectious diseases at New York Medical College and founder of its Lyme Disease Diagnostic Center. He was also a lead author of the IDSA guidelines.
“If you’ve been sick for months and months the [FDA-approved] lab tests should be positive,” he says, noting that patients who test positive and receive antibiotic treatment can have long-term problems, known as Post-Treatment Lyme Disease Syndrome.
One thing doctors agree on is the need for more research and funding for Lyme disease. Elected leaders do, too.
“The biggest frustration for me is the lack of adequate diagnosis,” says U.S. Sen. Richard Blumenthal, the Democrat from Connecticut. “It really needs and deserves the kind of financial investment from government that will develop better diagnoses and more effective treatment because it will make a world of difference to lives that are impacted."
Also critical, adds Horowitz, is a truce in the Lyme wars.
“We definitely need to work together and stop fighting because we’re in the middle of an epidemic where young children like Julia’s lives are being lost and it’s going to take years to get her back,” he says.