Lyme Science Blog
Dec 05

Study identifies189 children with Lyme carditis

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Heart and Lyme disease complications extend far beyond the classic heart block presentation. A national study identified 189 children with Lyme carditis showing a broad spectrum of cardiac problems — from myocarditis to cardiac arrest — with median treatment costs exceeding $9,000 per child and rising incidence across the United States.

The Growing Burden of Cardiac Lyme Disease in Children

In their article addressing the heart and Lyme disease connection, “Increasing Burden of Lyme Carditis in United States Children’s Hospitals,” Beach et al. reveal the rise in Lyme carditis cases throughout the U.S. The largest increases, they write, were found in the Midwest, including the Ohio valley.

The study analyzed a national database to identify pediatric Lyme carditis cases and characterize the full spectrum of cardiac complications in children with Lyme disease.

Who Gets Cardiac Lyme Disease?

According to the authors, the children with Lyme carditis were older than children with Lyme disease who did not have Lyme carditis. On average, they were 13 years old and more likely to be male.

This demographic pattern mirrors what we see in adults: young males are disproportionately affected by cardiac complications of Lyme disease. The concentration in adolescent males likely reflects higher outdoor exposure during activities like sports, camping, and hiking.

The Financial Burden of Heart and Lyme Disease

“Encounters for Lyme carditis are dramatically costlier than those for Lyme disease without carditis,” the authors explain.

The economic impact is substantial:

  • Median cost with Lyme carditis: $9,104 (range: $3,741 to $19,003)
  • Median cost without carditis: $922 (range: $238 to $4,987)

Lyme carditis costs approximately 10 times more to treat than Lyme disease without cardiac involvement. These costs reflect hospitalization, cardiac monitoring, temporary pacing when needed, IV antibiotic therapy, and cardiology consultations.

But these figures capture only direct medical costs. “In addition to this financial burden, it is important to consider the additional costs of missed school and work, long-term morbidity, and emotional distress when considering the importance of preventing, diagnosing, and treating Lyme carditis,” writes Beach.

Outcomes in Children

None of the 189 children identified in the database died. However, the database did not include out-of-hospital outcomes for children with heart problems and Lyme disease.

This limitation is important. The study captured hospital encounters, but couldn’t track patients who died before reaching the hospital or after discharge. While pediatric Lyme carditis deaths are rare, they have been documented in the medical literature.

Broad Spectrum of Cardiac Codes

In the study, there was a broad range of cardiac codes identified among the 189 children. The authors could not be sure of the accuracy of the cardiac codes or whether there were pre-existing cardiac conditions in some cases.

The list of cardiac complications is much broader than heart block alone, as identified in the Centers for Disease Control and Prevention’s (CDC) surveillance case definition. This finding suggests that the connection between heart and Lyme disease involves more diverse cardiac manifestations than traditionally recognized.

Cardiac Complications in 189 Children

Out of the 189 children, cardiac codes identified in the database included:

  • First degree AV block – 28%
  • Acute myocarditis – 27%
  • Complete AV block – 17%
  • Second degree AV block – 15%
  • Heart disease NOS – 9%
  • Non-specific ECG abnormality – 4%
  • Cardiomyopathy – 4%
  • Premature beats – 3%
  • Right bundle branch block – 3%
  • Acute pericarditis – 2%
  • Atrial fibrillation/flutter – 2%
  • Suspected cardiovascular disease – 2%
  • Paroxysmal ventricular tachycardia – 2%
  • Cardiac arrest – 2%
  • Congestive heart failure NOS – 2%
  • Conduction disorder NOS – 1%
  • Left bundle branch block – 1%
  • Anomalous AV excitation – 1%
  • Paroxysmal supraventricular tachycardia – 1%
  • Paroxysmal tachycardia – 1%
  • Pericardial disease NOS – 1%
  • Other cardiac dysrhythmias – 38%

What This Data Reveals

Several important patterns emerge from this cardiac code distribution:

1. AV block isn’t the only presentation: While various degrees of AV block accounted for 60% of cases (first, second, and complete combined), 40% had other cardiac manifestations.

2. Myocarditis is common: At 27%, acute myocarditis (inflammation of the heart muscle) was nearly as common as first-degree AV block. This suggests Borrelia burgdorferi affects both the heart’s electrical system and the muscle tissue itself.

3. Life-threatening arrhythmias occur: The presence of cardiac arrest (2%), ventricular tachycardia (2%), and congestive heart failure (2%) demonstrates that pediatric Lyme carditis can be immediately life-threatening, not just a temporary inconvenience.

4. Diagnostic complexity: The 38% categorized as “other cardiac dysrhythmias” suggests many children present with cardiac abnormalities that don’t fit neat diagnostic categories.

Geographic Expansion

The study found the largest increases in Lyme carditis cases in the Midwest, including the Ohio valley. This geographic expansion reflects the broader spread of Borrelia burgdorferi and its tick vectors beyond traditional Northeast endemic areas.

Clinicians in regions not historically considered Lyme-endemic must now maintain awareness of cardiac Lyme disease. A child in Ohio with unexplained myocarditis or heart block deserves the same diagnostic consideration for Lyme carditis as a child in Connecticut.

Clinical Perspective

The breadth of cardiac manifestations in this study challenges the narrow CDC surveillance definition that focuses primarily on AV block. In clinical practice, we see the full spectrum documented here: myocarditis, pericarditis, various arrhythmias, and conduction abnormalities beyond simple AV block.

The 27% presenting with myocarditis is particularly significant. These children may not have classic heart block, yet they have serious cardiac inflammation requiring hospitalization and treatment. If clinicians only consider Lyme disease when they see AV block, they’ll miss more than a quarter of pediatric cardiac Lyme cases.

The $9,104 median cost per Lyme carditis case is sobering, but it doesn’t capture the full burden. A 13-year-old hospitalized for a week with Lyme carditis misses school, parents miss work, there’s anxiety about permanent cardiac damage, and questions about long-term prognosis. These indirect costs compound the direct medical expenses.

The study’s conclusion bears repeating: “The increasing number of serious cardiac events and costs associated with Lyme disease emphasize the need for prevention and early detection of disease and control of its spread.”

Prevention means tick avoidance and prompt tick removal. Early detection means maintaining clinical suspicion for Lyme disease in children with cardiac symptoms, especially in expanding endemic areas. Both require clinician awareness and parent education.

Frequently Asked Questions

Can children get heart problems from Lyme disease?

Yes. This study identified 189 children with cardiac complications from Lyme disease, including heart block, myocarditis, pericarditis, and various arrhythmias. While less common than in adults, Lyme carditis can affect children and adolescents, particularly males around age 13.

What are the most common heart problems in children with Lyme disease?

First-degree AV block (28%) and acute myocarditis (27%) were most common, followed by complete AV block (17%) and second-degree AV block (15%). However, the study documented a broad spectrum of cardiac complications beyond these common presentations.

How much does it cost to treat a child with Lyme carditis?

The median cost was $9,104 per case (range: $3,741-$19,003), approximately 10 times higher than treating Lyme disease without cardiac involvement ($922 median). These costs reflect hospitalization, cardiac monitoring, IV antibiotics, and cardiology consultations.

Can children die from Lyme carditis?

Yes, though it’s rare. While none of the 189 children in this database died, the study couldn’t track out-of-hospital deaths. The database documented cardiac arrest in 2% of cases. Pediatric Lyme carditis deaths have been reported in the medical literature when diagnosis is delayed.

What age children are most at risk for heart problems from Lyme disease?

The average age was 13 years, with male children more commonly affected. This mirrors the pattern in young adults, where adolescent and young adult males have highest risk, likely due to greater outdoor exposure to ticks.

Is Lyme carditis only a problem in the Northeast?

No. While historically concentrated in the Northeast, this study found the largest increases in the Midwest, including the Ohio valley. Lyme carditis is expanding geographically and should be considered in any endemic or emerging endemic area.

What heart tests do children with Lyme carditis need?

At minimum, an EKG to assess for conduction abnormalities. Depending on symptoms, additional testing may include cardiac monitoring, echocardiogram, troponin levels, and continuous telemetry. Children with high-grade heart block require immediate hospitalization with cardiac monitoring.

References:
  1. Beach CM, Hart SA, Nowalk A, Feingold B, Kurland K, Arora G. Increasing Burden of Lyme Carditis in United States Children’s Hospitals. Pediatr Cardiol. 2019 Nov 14.

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