An infectious disease expert at Stanford Medicine, Dr. Jake Scott, has addressed common misconceptions about Lyme disease and its diagnosis. He notes that a large part of his practice involves working with patients who believe they have “chronic Lyme disease,” a term not recognized by mainstream medicine.
“My role combines patient care with education,” said Scott. “I try to ensure that people are diagnosed accurately rather than being misdiagnosed and overtreated.”
Lyme disease is caused by the bacterium Borellia burgdorferi, transmitted through tick bites. Early symptoms often include fatigue, fever, headache, muscle aches, and sometimes a bull’s-eye rash. If untreated, it can lead to joint pain and other complications.
The Centers for Disease Control and Prevention (CDC) refers to lingering symptoms after treatment as post-treatment Lyme disease syndrome. According to Scott: “The term ‘chronic Lyme disease’ isn’t supported by current medical evidence… But the science shows us these aren’t caused by persistent Lyme bacteria, so we need to look for other treatable causes.”
Scott discussed how geography affects risk. In California, ticks have much lower infection rates compared to the Northeast; less than 2% carry Lyme bacteria in California versus higher rates elsewhere. The state’s ecology—such as native lizards that clear infections from ticks—also reduces risk.
He noted an increase in patients seeking help for suspected Lyme due to greater awareness but also misinformation spread online and through alternative providers using unvalidated tests.
Nationally, tick-borne diseases rose about 25% from 2011 to 2019 due in part to warmer climates and expanding tick habitats (https://www.cdc.gov/ticks/data-summary.html). Cases of babesiosis have increased sharply in the northeastern United States during this period (https://www.cdc.gov/parasites/babesiosis/data-statistics.html).
“Even in high-endemic areas like the Northeast… only 5% to 10% of properly treated patients develop persistent symptoms,” Scott said regarding CDC data. Studies indicate these lingering effects are likely inflammatory responses rather than ongoing infection.
Misperceptions about chronic Lyme can result in unnecessary treatments: “Studies show that patients diagnosed with ‘chronic Lyme’ often receive months or years of antibiotics… far beyond any evidence-based recommendations.” A 2017 Stanford Medicine case series described serious complications—including death—from such prolonged treatments.
Conditions commonly mistaken for chronic Lyme include depression, diabetes, thyroid disorders, fibromyalgia, autoimmune diseases like lupus, vitamin deficiencies, sleep apnea, and multiple sclerosis.
Scott emphasized using only FDA-approved testing methods and following evidence-based guidelines: “We must resist pressure from patients to order unvalidated tests or prescribe prolonged antibiotic courses that can cause more harm than benefit.”
On prevention and new developments: Pfizer and Valneva’s vaccine candidate VLA15 is now in Phase 3 trials targeting different bacterial proteins than previous vaccines. There is also research into anti-tick vaccines designed to protect against multiple diseases by triggering immune reactions at bite sites.
The FDA recently cleared a new test aimed at streamlining diagnosis; artificial intelligence-based tests are under development as well.
For outdoor safety: Using DEET repellent and staying on trails helps reduce risk; checking for ticks within 24 hours usually prevents infection. Medical attention should be sought if symptoms develop after a tick bite or if someone has a compromised immune system.
“This story was originally published by Stanford Medicine.”
