Lyme Disease Misdiagnosis in Children: One Family’s Story

A young athlete went from starring on the soccer field to unable to climb stairs without his heart racing. His parents searched for answers for two years before anyone mentioned Lyme disease.

With no tick bite and no rash, they didn’t recognize the early warning signs. What followed was a diagnostic odyssey that too many families know all too well—and a case study in how Lyme disease misdiagnosis in children happens even when parents do everything right.

Who This Page Is For

This resource is for parents whose children have unexplained symptoms that don’t fit a clear diagnosis, families who have seen multiple specialists without answers, and anyone wondering if Lyme disease could explain their child’s sudden health changes. If you’ve been told “it’s anxiety” or “they’ll grow out of it” while your child continues to suffer, this page is for you.

The Diagnostic Odyssey

His family did what most families do: they sought help. They trusted the system. And each specialist had a different explanation.

The cardiologist reviewed his EKG, found it normal, and concluded it was probably anxiety. The GI specialist diagnosed functional dyspepsia and recommended antacids. Psychiatry suggested adjustment disorder and recommended therapy. The pediatrician reassured them he’d grow out of it.

Meanwhile, he kept getting worse.

His parents felt increasingly isolated. “We felt like we were going crazy,” his mother told me. “Every specialist had a different explanation.” Other parents at soccer games started avoiding them. They blamed themselves for not seeing it sooner.

This is how Lyme disease misdiagnosis in children unfolds—not through negligence, but through a medical system that struggles to connect the dots when symptoms don’t fit a textbook pattern.

When Lyme Doesn’t Look Like Lyme

Lyme disease in children doesn’t always appear with a rash or swollen joints. In fact, most children with Lyme disease never see a tick bite. Instead, the infection may show up as conditions that have other possible causes—making Lyme disease misdiagnosis in children frustratingly common.

POTS (postural orthostatic tachycardia syndrome) can cause dizziness, palpitations, and fainting. This child had all of these, but because his EKG was normal, no one connected his autonomic dysfunction to an underlying infection.

PANS (pediatric acute-onset neuropsychiatric syndrome) can cause sudden OCD, severe anxiety, or regression in school. Children who were thriving academically may suddenly struggle—and the change gets attributed to stress or mental health rather than infection.

Gastroparesis causes nausea, bloating, and delayed stomach emptying. Like his GI symptoms, it’s often treated with antacids or dietary changes without investigating the underlying cause.

These conditions may be overlooked signs of Lyme disease, especially when symptoms appear suddenly in a previously healthy child.

Red Flags Parents Should Watch For

Lyme disease misdiagnosis in children often occurs because parents and doctors aren’t looking for it. Knowing the red flags can change that.

Parents should take note if their child develops dizziness, fainting, or a racing heart—particularly if these symptoms are new. Abrupt onset of OCD, anxiety, or school regression deserves evaluation beyond psychiatry alone. Persistent nausea or stomach pain that doesn’t respond to standard treatment warrants a closer look. Migrating joint or muscle pain—especially if it moves from one area to another—is a classic Lyme pattern often mistaken for sports injuries. Unexplained fevers, sweats, or night chills should raise suspicion. And headaches, brain fog, or memory lapses in a child who was previously sharp deserve more than a shrug.

Any one symptom may have multiple causes. But a cluster of these signs deserves further evaluation—including consideration of tick-borne illness.

Other Signs I’ve Seen Overlooked

In my practice, I’ve seen many children with Lyme disease misdiagnosis in their history. The patterns repeat.

Joint pain gets mistaken for sports injuries or “growing pains.” Headaches are attributed to hormones, screens, or stress. Cognitive changes are dismissed as psychiatric. Anxiety or depression gets treated without anyone considering infection as a contributor. Vision changes such as blurred vision or light sensitivity go unexplored. Neuropathy with tingling or burning pain gets labeled as “functional.” Sleep disturbances—insomnia or unrefreshing sleep—are blamed on poor sleep hygiene. Palpitations or chest pain are called anxiety. Seizure-like episodes get diagnosed as psychogenic. And autoimmune-like lab findings appear without clear explanation.

None of these symptoms alone proves Lyme disease. But when they cluster in a child with possible tick exposure, Lyme deserves a place on the differential—not as a last resort, but early in the workup.

Why the Signs Are Missed

Lyme disease misdiagnosis in children happens for understandable reasons.

Parents often expect a visible tick bite or bull’s-eye rash. When neither appears, Lyme drops off the radar. But according to the CDC, children ages 5–14 are among the highest-risk groups—and most never see the tick that bites them.

Specialists focus narrowly on their field. The cardiologist sees the heart. The GI doctor sees the gut. The psychiatrist sees behavior. No one steps back to ask: what could connect all of these?

POTS, PANS, and gastroparesis can have many different causes—which makes it easy to stop at the diagnosis without asking what triggered it. Testing limitations compound the problem: a negative Lyme test early in illness can close the door on further investigation.

That’s why careful professional evaluation—one that considers the full clinical picture—is so important.

Recognition and Recovery

In this child’s case, Lyme disease was eventually considered after two years of searching. Testing, combined with his history and clinical presentation, revealed what had been missed. He had Lyme disease—and likely had it the entire time.

Treatment was not quick or simple. Managing Lyme in children requires more than antibiotics—it requires addressing the whole child. But treatment gave him a chance to heal.

Today, he’s back in school full-time. He still has occasional days of fatigue, but he’s playing sports again. His parents understand now how subtle the clues can be—and how different the outcome might have been with earlier recognition.

His recovery reminds me why I do this work. It also reminds me that Lyme disease misdiagnosis in children is preventable—if we’re willing to look.

Frequently Asked Questions

How common is Lyme disease misdiagnosis in children?

Very common. Studies suggest most children with Lyme disease never recall a tick bite, and many don’t develop the classic rash. When symptoms are nonspecific—fatigue, headaches, mood changes—Lyme often isn’t considered until much later.

What conditions can Lyme disease mimic in children?

Lyme can present as POTS, PANS, gastroparesis, chronic fatigue, anxiety, depression, autoimmune conditions, and various neurological syndromes. This is why it’s sometimes called “the great imitator.”

Should I ask my child’s doctor to test for Lyme?

If your child has unexplained symptoms—especially clusters of fatigue, cognitive issues, pain, and autonomic symptoms—it’s reasonable to ask. Be aware that standard testing has limitations and a negative result doesn’t always rule out Lyme.

What should I do if my child’s doctor dismisses Lyme disease?

Seek a second opinion from a clinician experienced in tick-borne illness. Trust your instincts. You know your child better than anyone.

Can children fully recover from Lyme disease?

Yes. Many children recover fully with appropriate treatment. The earlier the diagnosis, the better the outcome. But even children diagnosed late can improve significantly with comprehensive care.

The Bottom Line

Lyme disease misdiagnosis in children is common—not because parents aren’t paying attention, but because the symptoms don’t always look like Lyme. When children develop sudden unexplained symptoms consistent with POTS, PANS, gastroparesis, or clusters of strange complaints, Lyme disease should be on the list of possibilities.

This family’s story could have ended differently. Two years of suffering might have been prevented with earlier recognition. If your child is struggling and no one can explain why, don’t stop asking questions.

“His parents overlooked subtle clues because they didn’t look like Lyme. That’s exactly why Lyme disease misdiagnosis in children is so common—and so preventable.”

Related Reading

• • • Children and Lyme Disease: Why Most Never See a Tick Bite
    • Managing Lyme in Children: 12 Interventions I Use
    • Medical Dismissal and Lyme Disease
    • Autonomic Dysfunction and Lyme Disease
    • Brain Fog and Cognitive Symptoms
    • Lyme Test Accuracy: Why Results Can Mislead
    • Lyme Disease Treatment Options
    • Lyme Disease Recovery and PTLDS