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 being unable to climb stairs without his heart racing. His parents searched for answers for two years before anyone mentioned Lyme disease.
With no recalled tick bite and no recognized rash, they did not 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 may be missed in children even when parents do everything right.
Lyme disease can be misdiagnosed in children because symptoms may resemble 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 do not 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 have 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 may be missed in children—not necessarily through negligence, but because symptoms do not always fit neatly within one specialty.
When Lyme Disease Doesn’t Look Like Lyme
Lyme disease in children does not always appear with a rash or swollen joints. A recalled tick bite may also be absent.
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 a rapid heart rate. This child had many of these symptoms, but because his EKG was normal, no one initially considered whether his autonomic dysfunction might be associated with a broader illness.
PANS (pediatric acute-onset neuropsychiatric syndrome) may involve sudden OCD, severe eating restriction, anxiety, emotional changes, or school regression. PANS is a clinical syndrome with multiple possible triggers, and its relationship to Lyme disease remains an area of clinical discussion.
Gastroparesis may cause nausea, bloating, abdominal pain, or delayed stomach emptying.
POTS, PANS, and gastroparesis are not specific to Lyme disease and may have many causes. However, when symptoms appear unexpectedly in a previously healthy child—particularly after possible tick exposure or in an endemic region—Lyme disease may reasonably be included in 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 a 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 of unexplained symptoms deserves closer evaluation but does not, by itself, establish a Lyme disease diagnosis.
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 may be considered psychiatric. Anxiety and depression may be treated without considering a broader medical evaluation. Vision changes can go unexplored. Tingling or burning sensations may be labeled functional. Sleep problems may be 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 is recognized, Lyme disease may drop off the list.
Children between ages 5 and 14 remain among the age groups with higher reported 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. Antibody tests may be negative early in the illness before detectable antibodies have developed, potentially creating 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. His history, clinical presentation, and testing were evaluated together.
Treatment was not quick or simple. Managing Lyme in children may require addressing the child’s broader clinical needs—not just the 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?
Lyme disease can be misdiagnosed in children because many do not recall a tick bite or have a recognized rash, and symptoms may overlap with other conditions. Studies of children referred to specialty clinics have documented errors involving both overdiagnosis and underdiagnosis.
What are early signs of Lyme disease in children?
Early signs may include fatigue, headaches, fever, muscle or joint pain, and an expanding erythema migrans rash. Some children may also experience dizziness, stomach symptoms, mood changes, school difficulties, or neurologic symptoms. A recalled tick bite or recognized rash may be absent.
What conditions can Lyme disease mimic in children?
Lyme disease symptoms may overlap with POTS, anxiety disorders, chronic fatigue, autoimmune illnesses, neurologic disorders, gastrointestinal conditions, and other infections. PANS and gastroparesis also have multiple possible causes and are not specific to Lyme disease.
Should I ask my child’s doctor to test for Lyme disease?
If symptoms are unexplained and occur in clusters, discussing a Lyme disease evaluation may be reasonable, particularly when there has been possible tick exposure or the child lives in or has visited an endemic area. Testing should be interpreted alongside the child’s history and clinical findings.
Can children recover from Lyme disease?
Most children with appropriately recognized and treated Lyme disease have a favorable prognosis. Recovery experiences vary, and improvement may still occur after a delayed diagnosis.
Clinical Takeaway
Lyme disease may be missed in children because symptoms can appear outside the classic textbook picture.
When previously healthy children develop clusters of unexplained symptoms—particularly with possible tick exposure or in an endemic region—Lyme disease deserves appropriate consideration.
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