When Children Are Told They Don’t Have Lyme Disease: Medically Unexplained Symptoms

When children are told they don’t have Lyme disease, their symptoms are often labeled as medically unexplained. This can leave families without clear answers while symptoms persist.

From the Archives (2019)

This article reflects clinical observations from a period when families of children with persistent symptoms were frequently told no underlying illness could be identified. At the time, Lyme disease was often excluded early in the diagnostic process, leaving many pediatric cases labeled as medically unexplained.

In a 2014 interview, Dr. Eugene Shapiro questioned whether chronic symptoms reported by patients were related to Lyme disease and recommended that the medical community “figure out ways to reduce healthcare-seeking behaviors” among patients who were ill and told they did not have Lyme disease. This perspective reflects ongoing misconceptions about Lyme disease that can leave patients without answers.

Shapiro described reviewing referrals to a pediatric infectious disease clinic, noting that more than 50% were for suspected Lyme disease. Of these, he reported that 80–90% did not have active Lyme disease and were instead categorized as having medically unexplained symptoms.

But what happened to these patients after receiving that diagnosis?

• Approximately 50% of parents were not satisfied with the consultation;
• Nearly 50% sought additional treatment elsewhere;
• More than 50% consulted providers outside their primary care team.

As Shapiro acknowledged, “simply telling parents that Lyme disease is not the cause of these non-specific symptoms… is not sufficient.”

What Are Medically Unexplained Symptoms?

The term medically unexplained symptoms (MUS) refers to persistent symptoms without an identifiable physical cause.¹ These may include fatigue, pain syndromes, gastrointestinal complaints, neurologic symptoms, and sleep disturbances.

MUS has often been approached as a psychiatric or functional diagnosis, with treatment focused on behavioral therapies.² However, this framework may not fully capture the complexity of patients with overlapping or evolving conditions.

Challenges in Diagnosing Lyme Disease

Lyme disease may be overlooked in some patients due to limitations in testing, particularly early in illness.

In one study, 41% of patients with an erythema migrans rash tested negative both before and after treatment.³ These findings highlight the difficulty of relying solely on serologic testing when evaluating patients with persistent symptoms.

For clinicians, distinguishing between medically unexplained symptoms and undiagnosed or evolving illness remains a significant challenge.

Clinical Perspective

In my clinical experience, families of children with persistent symptoms are often seeking acknowledgment that their child’s symptoms are real—and a thoughtful evaluation of possible causes.

When symptoms persist, it is important to remain open to re-evaluation, evolving diagnoses, and second opinions.

Supporting Children with Persistent Symptoms

When children continue to experience symptoms, families should feel supported in seeking additional evaluation and care.

Learn more about pediatric Lyme disease and how symptoms may present differently in children.

Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.

Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention