Episode 568: Lyme Disease Testing Is Failing Patients: Dr. Liz Horn Explains Why (And What Comes Next)

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πŸŽ™οΈ Episode Summary: Lyme Testing Is Failing Early Patients

In this critical episode with special guest co-host Ali Moresco, we sit down with Dr. Liz Horn, Principal Investigator of the Lyme Disease Biobank, to break down her latest research:

πŸ‘‰ Evaluation of standard and modified two-tiered testing algorithms using well-characterized early Lyme disease samples

This study takes a hard look at the current FDA-cleared Lyme testing system β€” and the findings are clear:

πŸ‘‰ Most early Lyme disease cases are being missed

Dr. Horn explains why this is happening, what it means for patients, and why clinical judgment β€” not just testing β€” must guide early diagnosis and treatment.


πŸ”¬ The Study at the Center of This Episode

πŸ“„ View Dr. Liz Horn’s Research Publications

πŸ“Š Study Focus:

  • Compared Standard Two-Tier Testing (STTT) vs Modified Two-Tier Testing (MTTT)
  • Used real-world patient samples from early Lyme cases
  • Evaluated four FDA-cleared diagnostic algorithms
  • Focused primarily on patients within the first ~3 weeks of symptoms

🚨 Key Finding: Early Lyme Testing Is Deeply Flawed

  • Only 22–36% of early Lyme cases tested positive
  • That means 64–78% of cases were missed
  • Most people with early Lyme disease will test negative

πŸ“Œ Easy-to-share summary for doctors and patients: New Bay Area Lyme Foundation Study Shows Common FDA-Cleared Lyme Tests Miss 64–78% of Early Cases


🧠 Why These Tests Fail

  • Current tests detect antibodies, not the bacteria itself
  • The immune system needs time to produce detectable antibodies
  • Early infections often test negative because the immune response has not developed yet
  • The two-tier system adds additional opportunities for false negatives

πŸ‘‰ Core issue: Testing measures the body’s response, not the infection


⏱️ The Critical Timing Problem

  • Within 1 week of symptoms, tests are almost always negative
  • Around 2 weeks, detection improves slightly
  • After 3–4 weeks, sensitivity increases but is still unreliable
  • Testing does not become fully accurate at any point

πŸ‘‰ Key insight: Testing remains inconsistent even after the early window


🎯 Even β€œClassic” Lyme Cases Are Missed

  • Patients with erythema migrans (EM rash) often tested negative
  • Very few patients present with a classic bullseye rash
  • A visible rash does not guarantee a positive test result

πŸ‘‰ Key takeaway: You can have Lyme and still test negative


⚠️ Major Issue: Test Inconsistency

  • The same patient can receive different results depending on the test used
  • One algorithm may detect Lyme while another misses it
  • Results depend on timing, immune response, and test design

πŸ‘‰ Result: Testing cannot reliably confirm or rule out Lyme disease


πŸ§β€β™‚οΈ Who Actually Tests Positive?

  • Patients with more symptoms were more likely to test positive
  • Longer duration of illness increased likelihood of detection
  • Stronger immune responses improved test sensitivity

πŸ‘‰ Translation: Testing tends to detect later-stage immune response, not early infection


πŸ’Š After Treatment: Testing Becomes Even Less Useful

  • This study focused on early Lyme within the first ~3 weeks, where testing already performed poorly
  • At approximately 3 months post-treatment, less than 5% of patients who still had an active infection tested positive
  • These patients were originally diagnosed with early Lyme and many continued to have symptoms consistent with active or ongoing infection

πŸ‘‰ Why this happens:

  • Antibiotics can suppress antibody production
  • The immune response may no longer be detectable
  • The bacteria may persist in tissues rather than circulating in blood

πŸ‘‰ Critical takeaway:

Patients may still have an active infection or ongoing disease process and test negative

πŸ‘‰ Bottom line:

  • Testing is unreliable early in infection
  • Testing remains unreliable after treatment
  • A negative test does not rule out Lyme disease at any stage

🧬 Another Challenge: Lyme Leaves the Blood

  • Borrelia bacteria can move into tissues
  • Blood-based tests may miss active infection
  • Direct detection becomes more difficult over time

πŸ‘‰ This is why antibody testing is used, despite its limitations


🧩 Bigger Insight From This Study

  • Current Lyme testing cannot reliably diagnose early infection
  • Diagnosis must include symptoms, exposure history, and clinical judgment
  • Over-reliance on testing leads to missed diagnoses and delayed care

πŸš€ What Comes Next (Hope from the Research)

  • Development of direct detection tests that identify the bacteria
  • Cell-free DNA testing approaches
  • AI and machine learning diagnostics
  • Multiplex testing targeting multiple markers
  • Urine-based diagnostic innovations

πŸ‘‰ These advances aim to replace outdated antibody-based testing


πŸ§‘β€βš•οΈ Education Gap (Major Takeaway)

  • Many clinicians are not trained on the limitations of Lyme testing
  • Negative tests are often incorrectly used to rule out disease
  • This contributes to delayed diagnosis and treatment

πŸ“š Resource for clinicians and patients: VectorWise CME – Lyme Disease Education


πŸ’‘ What This Means for You

  • A negative test does not rule out Lyme disease
  • Early symptoms are more important than lab results
  • Treatment decisions should not rely solely on testing
  • Follow-up care remains essential even after treatment

πŸ‘‰ Most important: Trust your symptoms and advocate for care


πŸ’š Final Message

This study confirms what many patients already experience:

  • The testing system is flawed
  • Early infections are frequently missed
  • Patients can remain sick while testing negative

But progress is happening.

πŸ‘‰ Better diagnostics are on the horizon

You are not alone. Your experience is real.Healing is possible.


🎧 Continue Learning

πŸ‘‰ Explore Tick Boot Camp Podcast Episodes

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