Lyme Disease Misdiagnosis in Children: One Family’s Story
Children often miss classic Lyme signs
POTS, PANS, and GI symptoms may be overlooked clues
Earlier recognition may shorten the diagnostic journey
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.
Lyme disease misdiagnosis in children is common because symptoms often look like anxiety, stomach problems, sports injuries, POTS, or behavioral changes rather than a classic tick-borne illness.
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. 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 would 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 necessarily through negligence, but because symptoms rarely fit neatly into one specialty.
When Lyme Disease Doesn’t Look Like Lyme
Lyme disease in children doesn’t always appear with a rash or swollen joints. In fact, many children with Lyme disease never recall a tick bite.
Instead, Lyme disease may resemble conditions with many possible causes—making pediatric Lyme disease symptoms easier to miss.
POTS (postural orthostatic tachycardia syndrome) may cause dizziness, palpitations, fainting, exercise intolerance, or rapid heart rate. This child had many of these symptoms, but because his EKG was normal, no one connected his autonomic dysfunction to a possible underlying infection.
PANS (pediatric acute-onset neuropsychiatric syndrome) may lead to sudden OCD, anxiety, emotional changes, or school regression.
Gastroparesis may cause nausea, bloating, abdominal pain, or delayed stomach emptying.
These conditions may have many causes. But when symptoms appear suddenly in a previously healthy child, Lyme disease belongs on the differential diagnosis.
Red Flags Parents Should Watch For
Parents should pay attention when symptoms cluster together rather than appearing in isolation.
Red flags may include:
- Dizziness, fainting, or racing heart
- Abrupt OCD, anxiety, or school regression
- Persistent nausea or stomach pain
- Migrating joint or muscle pain
- Unexplained fevers, sweats, or chills
- Headaches, brain fog, or memory lapses
- Exercise intolerance in previously active children
- Sleep disruption or excessive fatigue
Any one symptom may have multiple causes. A cluster deserves closer evaluation.
Other Signs I’ve Seen Overlooked
In my practice, the patterns repeat.
Joint pain gets mistaken for sports injuries or growing pains. Headaches are attributed to hormones or stress. Cognitive symptoms are dismissed as psychiatric. Anxiety and depression are treated without considering infection. Vision changes go unexplored. Tingling or burning sensations are labeled functional. Sleep problems are blamed on poor sleep hygiene.
None of these symptoms proves Lyme disease. But clusters of unexplained symptoms deserve attention.
Why Pediatric Lyme Disease Gets Missed
Parents often expect a visible tick bite or bull’s-eye rash. When neither appears, Lyme disease may drop off the list.
Children between ages 5 and 14 remain among the age groups with higher Lyme disease incidence in endemic regions.
Specialists naturally focus on their own systems—the heart, the gut, or behavior—while broader patterns may be harder to recognize.
Testing limitations add another challenge. Negative tests early in illness may create false reassurance.
That is why careful clinical evaluation matters.
Recognition and Recovery
In this child’s case, Lyme disease was eventually considered after two years of searching. Testing, combined with history and clinical presentation, revealed what had been missed.
Treatment was not quick or simple. Managing Lyme in children often requires addressing the whole child—not just infection.
Today, he is back in school full-time. He still has occasional fatigue but is playing sports again.
His recovery reminds me why pediatric Lyme disease recognition matters.
Frequently Asked Questions
How common is Lyme disease misdiagnosis in children?
Misdiagnosis is common because many children never recall a tick bite or rash, and symptoms often overlap with other conditions.
What are early signs of Lyme disease in children?
Early signs may include fatigue, headaches, joint pain, dizziness, stomach symptoms, mood changes, school difficulties, or unexplained neurologic symptoms. Many children never recall a tick bite or rash.
What conditions can Lyme disease mimic in children?
Lyme disease may resemble POTS, PANS, gastroparesis, anxiety disorders, chronic fatigue, autoimmune illness, or neurologic disorders.
Should I ask my child’s doctor to test for Lyme disease?
If symptoms are unexplained and occur in clusters, discussing Lyme disease evaluation is reasonable, particularly in endemic areas.
Can children recover from Lyme disease?
Many children recover well, particularly with earlier recognition and treatment. Improvement may still occur even after delayed diagnosis.
Clinical Takeaway
Lyme disease misdiagnosis in children often happens because symptoms appear outside the classic textbook picture.
When previously healthy children suddenly develop clusters of unexplained symptoms, Lyme disease deserves consideration earlier—not later.
Related Articles
These related articles explore pediatric Lyme disease, testing limitations, autonomic symptoms, and recovery.
Children and Lyme Disease: Why Most Never See a Tick Bite
Managing Lyme in Children: 12 Interventions I Use
Medical Dismissal and Lyme Disease
Lyme Test Accuracy: Why Results Can Mislead
Lyme Disease Recovery and PTLDS
References
- Nigrovic LE, Thompson AD, Fine AM, Kimia AA. Clinical predictors of Lyme disease among children with a peripheral facial palsy at an emergency department in a Lyme disease-endemic area. Pediatrics. 2010;126(5):e1080-e1085.
- Centers for Disease Control and Prevention. Lyme Disease Data and Surveillance. Accessed May 2026.
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
Thank you for the thorough articles. Could a child with symptoms as described in you article and negative Lyme serology still have Lyme disease – possibly congenital Lyme disease (from an infected mother during pregnancy) ? To my understanding children born to a mother with Lyme disease may not necessarily produce an immune response leading to negative serology?
I don’t know enough about the topic to help you