Like long COVID, Lyme disease can become chronic — and patients are just as dismissed and desperate

Between 2012 and 2014, Tracy Jakich Davis’ 14-year-old son, Jaden, developed a host of mysterious symptoms that more than a half dozen doctors near Phoenix, Arizona could not piece together to form a diagnosis: a rash that looked like ringworm all over his head; swelling and pain in the knees that kept him from playing basketball; pain in the fingers so strong he couldn’t grip a golf club; a suppressed immune system that caused him to pick up viruses every four to six weeks; and, finally, severe migraines with blurred vision. Dr. Daniel Cameron, an internist and twice past president of the International Lyme and Associated Diseases Society, said he has seen many patients who have been sick for five or six years but have been passed around by so many different doctors that they become “lost in the system.” “There are quite a few, but I just don't think there's enough to meet demand,” Cameron told Salon in a phone interview. Today, the CDC discourages the use of the term "chronic Lyme disease" because it implies that prolonged symptoms are caused by an ongoing Lyme disease infection when the cause of the symptoms isn’t actually known yet, said Dr. Grace Marx, a medical epidemiologist with the Bacterial Disease Branch at CDC’s Division of Vector-Borne Diseases. “Otherwise, it's like the Wild West out there, even though I've been publishing as much as I can on the efficacy and safety of these protocols.” In a survey published last year of doctors who treated patients with persistent Lyme disease, one reported moving to another state because they said they, along with other physicians who treated complex cases like chronic Lyme, were “specifically targeted by health insurance companies for medical board complaints and other attacks, especially when they helped patients other doctors gave up on.” Davis says she has to pay a naturopath out of pocket because many doctors who treat Lyme have stopped doing so through insurance out of fear of retaliation. It is a huge burden.” In 2019, the American Medical Association acknowledged the issue by adopting a policy that stated, “The threat posed by vector-borne diseases is increasing, and we have a limited capacity to respond.” Marx said the agency is currently working to develop tools to better evaluate and treat patients with Lyme disease in collaboration with the CDC, starting by hosting focus groups with doctors from various specialties who treat chronic Lyme to produce resources for clinicians that should be available in 2024.