Pediatric Lyme Disease and Missed Diagnosis
Children with Lyme disease may be told nothing is wrong
Early or incomplete testing can create false reassurance
Careful history and clinical judgment still matter
A mother brings her daughter to three different doctors over six months. The child has debilitating fatigue, recurring headaches, and joint pain. Each visit ends the same way: “The tests are normal. There’s nothing wrong.” But the mother knows something has changed.
Pediatric Lyme disease missed diagnosis can reflect testing limitations, atypical presentations, and symptoms that overlap with other childhood conditions. When the diagnosis remains uncertain, careful follow-up and attention to the child’s evolving clinical picture are important.
For a broader discussion of how Lyme disease can present in children, see Pediatric Lyme disease.
Why pediatric Lyme disease may be missed
Diagnosing Lyme disease in children can be challenging. Early symptoms may be nonspecific, a tick bite may not have been noticed, and an erythema migrans rash may be absent, overlooked, or mistaken for another skin condition.
Children may also have difficulty describing symptoms such as brain fog, migrating pain, dizziness, or changes in concentration. Fatigue may be attributed to school demands, joint discomfort to growing pains, and behavioral changes to anxiety or attention problems.
Different specialists may evaluate individual symptoms without recognizing a broader pattern. A neurologist may focus on headaches, a rheumatologist on joint pain, and a mental health professional on mood or behavior. Each assessment may be reasonable, but the possible connection among symptoms can be missed.
Diagnostic error can occur in both directions. In a study of 146 children referred for suspected Lyme disease, Feder and Hunt reported that 12 children were underdiagnosed, while others had been overdiagnosed or incorrectly treated. The findings illustrate why compatible symptoms, exposure history, examination findings, and properly interpreted testing must be considered together. [1]
Testing limitations can create false reassurance
Lyme disease testing generally looks for antibodies produced in response to Borrelia burgdorferi rather than detecting the organism directly. These antibodies can take time to develop.
The Centers for Disease Control and Prevention notes that serologic tests may be falsely negative during the first four to six weeks after infection. Patients treated very early in the illness may also be less likely to develop a detectable antibody response. [2]
A negative result obtained early therefore may not provide a complete answer when a child has a compatible illness and credible exposure history. At the same time, testing children whose symptoms are not clinically consistent with Lyme disease can increase the risk of false-positive or misleading results.
Parents may hear “nothing is wrong” even though the child’s symptoms and functional decline remain unexplained. A negative Lyme test does not establish another diagnosis or eliminate the need to investigate persistent symptoms.
These issues overlap with broader concerns about delayed Lyme disease diagnosis, particularly when early symptoms are vague or initial testing is performed before antibodies have developed.
ELISA vs. Western blot in pediatric Lyme disease
Lyme serologic testing usually follows a two-step process. If the first-tier test is negative, additional testing is generally not performed. If the first test is positive or equivocal, a second test is used to determine the overall result. [2]
Standard two-tier testing uses an enzyme immunoassay, commonly called an EIA or ELISA, followed by an IgM and/or IgG immunoblot. The immunoblot is also commonly called a Western blot.
Modified two-tier testing uses a second EIA instead of an immunoblot. Therefore, not every current two-tier testing method includes a Western blot.
The timing of testing matters. A child tested soon after infection may have a negative first-tier test because the antibody response is not yet detectable. When recent infection remains clinically possible, the physician may consider whether repeat testing on a new sample is appropriate.
Serologic results must also be interpreted in relation to the duration and type of illness. For example, an isolated positive IgM result becomes less reliable after more than 30 days of symptoms. Antibodies can also remain detectable for months or years and cannot determine whether an infection has been cured. [2]
What parents experience
Parents may describe being told that their concerns are exaggerated, that they are anxious, or that their child appears healthy. Meanwhile, they may watch a previously active child struggle to attend school, participate in sports, sleep normally, or complete ordinary daily activities.
Some children develop headaches, fatigue, pain, dizziness, joint swelling, facial weakness, cognitive difficulties, or behavioral changes. No single symptom proves Lyme disease, but a changing pattern involving several systems may justify a broader evaluation.
Some families have even encountered situations involving Lyme disease mistaken for child abuse when an unusual rash or unexplained physical finding was misunderstood.
Parents can begin to question their own observations when laboratory results and brief office examinations appear reassuring. However, documenting changes in function, symptom patterns, and physical findings can provide clinicians with information that may not be apparent during a short appointment.
The physician’s diagnostic dilemma
Pediatricians must distinguish Lyme disease from viral infections, juvenile idiopathic arthritis, septic arthritis, migraine, behavioral conditions, other tick-borne infections, and numerous additional illnesses. Both missing Lyme disease and incorrectly attributing unrelated symptoms to Lyme disease can have consequences.
Clinicians may also work within time constraints, institutional policies, insurance requirements, and commonly accepted diagnostic pathways. These factors can make it difficult to investigate a complicated history during a standard appointment.
A careful evaluation should consider the likelihood of tick exposure, geographic risk, the timing and progression of symptoms, physical findings, possible alternative diagnoses, and the strengths and limitations of laboratory testing. Reviews of pediatric Lyme disease emphasize using serologic testing in children with compatible clinical syndromes and plausible exposure. [3,4]
The goal is not to assume that every unexplained symptom is Lyme disease. It is to avoid prematurely excluding Lyme disease when the exposure history and evolving clinical picture warrant further consideration.
Communication strategies for parents
Effective physician-parent communication benefits from organization and documentation. Parents can bring a written timeline showing when symptoms began, how they changed, and how they affected school, sleep, mobility, sports, and ordinary activities.
Photographs of rashes or swelling may be helpful, particularly if the physical finding has resolved before the appointment. Parents should also document known tick bites, outdoor activities, pets, travel, and time spent in Lyme-endemic areas.
Questions parents may consider asking include:
- What conditions could explain this combination of symptoms?
- Could the timing of the Lyme test affect the result?
- Was standard or modified two-tier testing performed?
- Does the exposure history make Lyme disease clinically plausible?
- Would repeat testing be appropriate if the first test was performed early?
- Are there other tick-borne infections or noninfectious conditions that should be evaluated?
- What changes would warrant another examination or referral?
Rather than requesting testing indiscriminately, parents can ask whether testing is indicated based on the child’s symptoms, exposure risk, and stage of illness. If testing has already been performed, requesting a copy of the complete laboratory report may clarify which testing algorithm was used and how the result was interpreted.
When the initial evaluation does not provide an explanation, parents can frame a request for another opinion collaboratively: “I appreciate your evaluation. Because the symptoms and functional decline are continuing, I would like another opinion to make sure we have not missed an infectious, neurologic, rheumatologic, or other medical condition.”
When to seek a second opinion
A second opinion may be appropriate when:
- Symptoms persist or worsen despite reassurance
- The child’s ability to attend school or complete normal activities declines
- New objective findings, such as rash, facial weakness, or joint swelling, appear
- The timing or type of Lyme testing remains unclear
- Several symptoms may be connected but have been evaluated separately
- A proposed diagnosis does not explain the complete clinical picture
- Treatment for another suspected condition does not lead to improvement
Seeking another opinion does not mean the first physician acted improperly. It is an accepted part of medical care when symptoms remain unexplained or the diagnosis is uncertain.
Finding a pediatric Lyme disease specialist
Families searching for a pediatric Lyme disease specialist are often looking for a clinician who understands pediatric presentations, testing limitations, tick exposure, and illnesses that may resemble Lyme disease.
A clinician experienced with pediatric tick-borne illness should consider the child’s symptoms, examination findings, exposure history, test results, functional changes, and reasonable alternative diagnoses together rather than relying on one isolated finding.
The ILADS provider directory lists practitioners who have expressed an interest in treating tick-borne diseases. Parents should independently confirm whether a listed clinician evaluates children and whether the practice is appropriate for the child’s needs.
Questions to ask a potential physician include:
- Do you routinely evaluate children or adolescents?
- How do you interpret Lyme testing performed early in an illness?
- How do symptoms and exposure history affect your diagnostic decisions?
- How do you evaluate alternative diagnoses and possible coinfections?
- How will you coordinate care with the child’s pediatrician and other specialists?
Frequently Asked Questions
What should I do if my child’s doctor says nothing is wrong but symptoms continue?
Document the symptoms, their timing, and their effect on normal activities. Request copies of laboratory results and ask what other conditions could explain the child’s symptoms. If symptoms persist, worsen, or remain unexplained, consider seeking another medical opinion.
Why can pediatric Lyme disease be missed?
Pediatric Lyme disease may be missed when a tick bite is not noticed, a rash is absent or atypical, symptoms resemble other childhood conditions, or antibody testing is performed before a detectable immune response has developed.
Can Lyme disease tests be negative in children?
Yes. Serologic tests can be falsely negative during the early weeks of infection because antibodies may not yet be detectable. Test timing, the child’s clinical presentation, exposure history, and possible alternative diagnoses should be considered together.
Does every two-tier Lyme disease test include a Western blot?
No. Standard two-tier testing uses an immunoblot, commonly called a Western blot, as the second step. Modified two-tier testing uses a second enzyme immunoassay instead.
How can I advocate for my child without alienating the doctor?
Bring a concise symptom timeline, photographs of physical findings, exposure information, and copies of previous results. Ask focused questions and explain how the symptoms are affecting the child’s daily functioning. A collaborative request for additional evaluation or referral is often more productive than focusing on a single diagnosis.
When should I seek a pediatric Lyme disease specialist?
Another evaluation may be appropriate when symptoms or functional decline continue, the timing or interpretation of testing is uncertain, objective findings develop, or the current diagnosis does not explain the full clinical picture.
Clinical Takeaway
Pediatric Lyme disease can be difficult to recognize when the tick bite is unnoticed, symptoms are atypical, or testing is performed before antibodies are detectable. Negative early testing should be interpreted within the child’s exposure history, symptoms, physical findings, and stage of illness.
A balanced evaluation should consider Lyme disease without assuming that every unexplained symptom is caused by it. Persistent symptoms and functional decline still require an explanation, appropriate follow-up, and consideration of other infectious and noninfectious conditions.
When a child’s condition continues to change despite reassurance, careful documentation and a well-timed second opinion may help uncover what an isolated test or brief examination missed.
Related Articles
Persistent Lyme disease symptoms
Lyme disease misdiagnosis
Lyme disease child behavior
Neuropsychiatric Lyme disease
References
- Feder HM Jr, Hunt MS. Pitfalls in the diagnosis and treatment of Lyme disease in children. JAMA. 1995;274(1):66–68.
- Centers for Disease Control and Prevention. Clinical testing and diagnosis for Lyme disease. CDC. 2024.
- Lipsett SC, Nigrovic LE. Diagnosis of Lyme disease in the pediatric acute care setting. Curr Opin Pediatr. 2016;28(3):287–293.
- McCarthy CA, Helis JA, Daikh BE. Lyme disease in children. Infect Dis Clin North Am. 2022;36(3):593–603.
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
