Early Signs, Missed Diagnoses, and an Alarming Lack of Follow-Up in Lyme Disease Care
Despite rising awareness and a growing number of cases, a new study finds that the U.S. healthcare system continues to fall short in diagnosing and managing Lyme disease—particularly in its earliest, most treatable stages.
Researchers from the Bay Area Lyme Foundation reported that only one in three people with ongoing early-stage Lyme symptoms returned for follow-up care after initial treatment. The findings, published today in Frontiers in Medicine, underscore troubling gaps in both testing and continuity of care.
Even more concerning: the CDC-recommended diagnostic test missed a significant number of cases. Among patients with clear early symptoms—including the hallmark bullseye rash—only 23% tested positive using the current two-tiered blood test protocol.
“Accurate, timely detection of Lyme disease is critical to preventing long-term complications,” said Dr. Liz Horn, lead author of the study and principal investigator at the Lyme Disease Biobank. “And medical follow-up could be just as vital as the initial treatment itself.”
A Disease That’s Easy to Miss—and Hard to Shake
Lyme disease, caused by the Borrelia burgdorferi bacteria and transmitted through black-legged tick bites, is the most common vector-borne illness in the U.S. Early symptoms include fatigue, fever, chills, muscle aches, swollen lymph nodes, and often—but not always—a circular red rash that expands from the bite site.
Despite the clinical importance of catching Lyme early, the study found that only 34% of patients with a rash larger than five centimeters—a textbook diagnostic marker—received a positive test result. The rest went undetected under CDC guidelines.
This diagnostic blind spot has consequences. About 21% of study participants continued to experience symptoms like joint pain, fatigue, and muscle aches three months after treatment—signs of what’s often called post-treatment Lyme disease syndrome or chronic Lyme.
Yet among those still struggling, just 35% followed up with a healthcare provider.
“These numbers suggest a serious breakdown in continuity of care,” said Dr. Horn. “We don’t know if patients are dropping off due to financial or logistical barriers, or if clinicians are failing to schedule and prioritize follow-ups.”
Barriers Beyond the Clinic
The reasons patients don’t return are complex and often invisible. Previous studies have pointed to a host of barriers: lack of insurance, out-of-pocket costs, difficulty accessing specialized care, and long travel distances in rural or underserved areas.
For some, it’s a question of trust. Persistent Lyme symptoms are sometimes dismissed or misunderstood by clinicians unfamiliar with the disease’s chronic manifestations, leaving patients to navigate symptoms alone.
The researchers stopped short of prescribing policy solutions but urged clinicians to shift their approach.
“Healthcare professionals treating patients with early Lyme disease are encouraged to follow up with their patients, assess them for ongoing symptoms, and consider antibiotic re-treatment as appropriate,” the authors wrote.
They added that early detection, paired with ongoing assessment and tailored care, could reduce the number of patients who develop long-term complications—and ultimately lighten the public health burden of Lyme disease.
The Call for Change
Experts and patient advocates have long warned that the official case count—approximately 476,000 U.S. cases annually by some estimates—is likely an undercount. But the deeper concern may be the number of patients who slip through the cracks after diagnosis.
This new research adds urgency to that concern: a diagnostic system that underperforms, follow-up care that’s sporadic at best, and a growing group of patients left without answers or adequate support.
Until that changes, Lyme disease will remain more than just a tick-borne infection—it will be a long, uncertain journey for too many.
