Of the celebrities who have gone public with their Lyme diagnosis, most fall into the chronic Lyme category: persistent, debilitating symptoms that last for years and are extremely difficult to treat effectively, let alone cure. Still, the CDC has been hesitant to embrace the popular narrative about chronic Lyme. "There's been some antagonism between the Center for Disease Control and advocacy groups," says Levi, "particularly in regards to chronic Lyme and if it even exists."
According to a CDC spokesperson, "the term 'chronic Lyme disease' is confusing and misleading because it is used to describe patients with and without Lyme disease." Instead, the CDC makes a distinction between Lyme disease and Post-Treatment Lyme Disease Syndrome (PTLDS), which they describe as "a condition of persistent symptoms that exists in some patients with Lyme disease after treatment." In other words, if you were bitten by a tick, exhibited symptoms of Lyme disease (including the telltale bull's-eye rash), received treatment, and didn't get better, your condition would match the CDC’s description of PTLDS. If you went to the doctor reporting lingering symptoms consistent with Lyme (like fatigue and muscle aches) but hadn't been diagnosed with Lyme in the past, you could be diagnosed with "chronic Lyme," and that's what the CDC takes issue with. Says the spokesperson: "While the term [chronic Lyme] is sometimes used to describe patients with PTLDS, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with Lyme disease. People who have an illness with symptoms compatible with Lyme disease need to be diagnosed correctly and treated properly as quickly as possible. We want people to get the right diagnosis and the appropriate care."
Unfortunately, getting the right diagnosis can be extremely difficult. Borrelia burgdorferi is nearly impossible to detect in the bloodstream. Without evidence of a tick bite or rash in the days following initial infection, there is still not a reliable diagnostic test for Lyme. The CDC's definition of PTLDS hinges on a Lyme diagnosis – and for good reason – but without a direct way to test for infection, many patients suffering from lingering Lyme symptoms are left in the medical lurch.
The CDC counts "the need for improved diagnostic tests" among its goals for addressing the growing Lyme disease problem, but researchers on the ground say the government has been loath to support its promises with resources. "It's a difficult thing to study," says Levi. "It takes a lot of money and there's very little money for Lyme disease research, which means there's a lot of competition. You've got to keep money flowing for researchers to remain engaged. We need more field studies, more data, but who's going to fund a 10-year field project?"
