• Posted July 10, 2025

Lyme Disease Patients Aren't Getting Proper Follow-Up Care

Most folks diagnosed with Lyme disease aren’t getting the follow-up care they need, a new study says.

Only one-third of people (35%) with ongoing early-stage Lyme disease symptoms checked back in with their doctor, researchers reported today in the journal Frontiers in Medicine.

Further, evidence shows the U.S. Centers for Disease Control and Prevention’s (CDC) recommended blood test for Lyme disease appears to miss many early cases, researchers added.

“Accurate, timely detection of Lyme disease is critical to preventing long-term complications,” said lead researcher Liz Horn, principal investigator of the Bay Area Lyme Foundation’s Lyme Disease Biobank program.

“Moreover, follow-up from medical professionals with all patients after they complete antibiotic treatment could improve outcomes and reduce the burden of Lyme disease,” Horn said in a news release.

Lyme disease is a bacterial infection spread through tick bites.

Symptoms include fever, chills, headache, fatigue, muscle and joint aches, swollen lymph nodes, and a distinctive bullseye rash at the site of the tick bite, according to the CDC.

For the new study, researchers tracked 253 people participating the Lyme Disease Biobank, an effort to collect and store human biological samples from Lyme patients. These cases occurred in Long Island, N.Y., and Central Wisconsin.

Only 23% of Lyme patients with early signs or symptoms tested positive under CDC guidelines, results show.

The blood test also only caught about 34% of patients who presented with a Lyme rash larger than five centimeters, which is “considered diagnostic for Lyme disease,” researchers said.

These figures jibe with previous research indicating that the blood test misses up to 70% of cases of early-stage Lyme disease, researchers said.

About 1 in 5 patients (21%) reported ongoing Lyme symptoms after three months, including joint pain, fatigue and muscle pain, researchers said.

Of those patients with ongoing symptoms, just 35% followed up with their doctor, however, researchers found.

The study didn't say why Lyme patients didn’t follow up with health professionals, but earlier studies have shown that barriers to care could be a cause, researchers said. 

These include lack of insurance coverage, cost, travel time and distance to obtain care and availability of care nearby.

“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,” researchers concluded in their report.

“Early diagnosis and treatment, with additional follow-up by healthcare providers, has the potential to improve patient outcomes, decrease the percentage of people who progress to persistent Lyme disease, and reduce the overall burden of Lyme disease,” they added.

More information

The U.S. Centers for Disease Control and Prevention has more on Lyme disease.

SOURCES: Bay Area Lyme Foundation, news release, July 10, 2025; Frontiers in Medicine, July 10, 2025