A 17-year-old honor student died from Lyme carditis 12 days after negative test results. This fatal case demonstrates why clinical diagnosis cannot wait for laboratory confirmation when cardiac symptoms are present.

Welcome to an Inside Lyme case study. This case was discussed in the journal Cardiovascular Pathologist by Yoon and colleagues in 2015, with background published in the Poughkeepsie Journal.

A Preventable Death

He was a high school honor roll student who aspired to be an environmental engineer and loved the outdoors. He had just returned home from a two-week stay at a camp in Rhode Island – a state endemic for Lyme disease – when he fell ill.

For three weeks, he suffered what appeared to be a viral syndrome: sore throat, cough, and occasional fever. His doctor evaluated him for “nonspecific symptoms of upper respiratory tract infection, fever, malaise, and body aches,” according to Yoon.

His tests were negative for strep, Lyme disease, and anaplasmosis.

He subsequently developed diarrhea, lightheadedness, and photophobia – symptoms that should have raised concern for Lyme carditis given his recent exposure in an endemic area.

“However, 12 days after his visits, he was found lying unresponsive on his lawn,” Yoon wrote. Within hours, he passed away.

The Autopsy Revealed What Tests Missed

The autopsy showed an enlarged heart. The spirochetes that cause Lyme disease were found in the young man’s fresh liver and myocardial tissue. Evidence of these spirochetes appeared in heart, lung, and brain tissues using immunohistochemistry staining and polymerase chain reaction (PCR) tests.

The ELISA and Western blot IgM tests that had been negative while the young man was alive were now positive for Lyme disease. The cause of death: fatal Lyme carditis.

This pattern repeats itself across fatal Lyme carditis cases – negative serology during acute illness, positive results on autopsy. The delay between infection and detectable antibody response creates a deadly gap when physicians wait for test confirmation before treating.

[bctt tweet=”While Lyme carditis may be rare, this young man’s tragic death illustrates the potential dangers of relying on serology tests to diagnose and treat Lyme disease.” username=”DrDanielCameron”]

Why the Diagnosis Was Missed

The authors highlighted the dangers of over-reliance on laboratory tests: “While Lyme carditis may be rare, this young man’s tragic death illustrates the potential dangers of relying on serology tests to diagnose and treat Lyme disease. It also underscores the ongoing confusion among clinicians over the accuracy and reliability of such tests, specifically the ELISA and Western blot.”

Consider what was known at the time of evaluation:

• Typical Lyme symptoms: fatigue, headaches, body aches, GI disruptions, fevers, light sensitivity
• Recent visit to Lyme-endemic region (Rhode Island camp) with high probability for tick exposure
• Residence in Dutchess County, New York – an area endemic for Lyme disease with an estimated 50% of deer ticks infected with the Lyme organism
• Development of lightheadedness – a red flag symptom for cardiac involvement

The clinical picture warranted empiric treatment regardless of test results. Current guidelines explicitly recommend starting antibiotics when Lyme carditis is suspected, not waiting for serologic confirmation.

What We Can Learn

1. Lyme carditis can be fatal – particularly when diagnosis is delayed or treatment withheld
2. Lyme carditis can occur with negative tests – serology lags behind acute infection
3. Clinical diagnosis saves lives – waiting for test confirmation in high-suspicion cases can be fatal
4. Geographic and exposure history matter – endemic area exposure should lower the threshold for empiric treatment

The Critical Question

Would treatment have been effective if this young man was treated clinically rather than waiting for test confirmation?

The evidence says yes. Lyme carditis typically resolves rapidly with antibiotics when treatment begins promptly. Heart block that requires temporary pacing often normalizes within days. Patients recover completely when antibiotics are started before irreversible cardiac damage occurs.

But this young man never received that chance.

The Broader Problem

This case represents a pattern of medical dismissal seen across Lyme disease diagnosis – the elevation of imperfect laboratory tests over clinical judgment, the unwillingness to treat empirically when stakes are high, the assumption that negative serology rules out active infection.

We need more doctors with skills diagnosing and treating Lyme disease when tests are negative. We also need to give doctors the freedom to treat these difficult cases without undue interference by colleagues, insurance companies, medical societies, and medical boards.

Frequently Asked Questions

Can Lyme carditis kill you even with negative tests?

Yes. Lyme disease tests can be negative early in infection – precisely when carditis tends to occur. This young man had negative serology during his illness but positive results on autopsy. Waiting for test confirmation before treating suspected carditis can be fatal.

How quickly can Lyme carditis become fatal?

This patient died 12 days after his initial medical evaluation. Lyme carditis can progress from mild symptoms to complete heart block within hours to days.

Should doctors treat Lyme carditis before test results come back?

Yes. Current guidelines recommend starting antibiotics immediately when Lyme carditis is suspected, not waiting for serologic confirmation. The risk of treatment delay outweighs the risk of empiric antibiotics in high-suspicion cases.

What symptoms should trigger concern for Lyme carditis?

Lightheadedness, syncope, chest pain, palpitations, or shortness of breath – especially in patients with recent tick exposure or residence in endemic areas. Any cardiac symptoms in a Lyme patient warrant immediate evaluation.