Parents Often Recognize Lyme Disease Symptoms Before Diagnosis
Parents may notice Lyme disease symptoms before a diagnosis is made.
Children can develop pain, fatigue, walking problems, or behavioral changes.
Caregivers often become strong advocates during delayed diagnosis.
Guest Blog
By Jennifer Bybel Lown, Nurse Practitioner
Dr. Daniel Cameron & Associates
Lyme disease remains a misunderstood illness often surrounded by conflicting information. In many cases, family members become more familiar with evolving symptoms than the medical professionals initially evaluating the patient.
We recently treated a 14-year-old girl who had been ill for more than a year. Other physicians had suggested that the pain and difficulty walking she was experiencing were related to anxiety. Her mother refused to accept that explanation and continued searching for answers.
After finding a physician experienced in treating Lyme disease, the teenager was diagnosed with Bartonella and Babesia. She is currently receiving treatment and is doing much better. She no longer has difficulty walking and has been able to return to school.
It can be extremely difficult to be the spouse, parent, or caregiver of someone suffering from Lyme disease. Over the years working with Dr. Cameron, I have met many patients and families who became tireless advocates for their loved ones while trying to understand symptoms that evolved over time.
Parents Often Notice Symptoms Before Diagnosis
Parents frequently observe subtle changes before Lyme disease is diagnosed. These changes may include fatigue, headaches, irritability, sleep disruption, pain, difficulty concentrating, or declining school performance.
For additional discussion, see Early Signs of Lyme Disease in Children.
Some children develop neurologic or musculoskeletal symptoms gradually, making diagnosis more challenging early in the illness.
When symptoms evolve slowly or fluctuate, families may continue searching for explanations long after initial medical evaluations.
Lyme Disease Symptoms May Be Mistaken for Anxiety
Children and adolescents with Lyme disease are sometimes initially evaluated for anxiety, behavioral conditions, stress-related symptoms, or other diagnoses before Lyme disease is considered.
Behavioral changes, chronic pain, fatigue, and walking difficulties can create diagnostic confusion, particularly when laboratory findings or physical examination results are not straightforward early in the illness.
These experiences can be frustrating for families who feel their concerns are not fully understood.
Evaluating Lyme Disease Information Online
There is a tremendous amount of Lyme disease information online, but not all of it is reliable or helpful. I often encourage patients and caregivers to consider the source carefully.
Understanding possible bias, commercial interests, and the difference between personal experience and evidence-based information can help families evaluate what they read online.
At the same time, many patients find comfort in hearing from others with similar experiences, while some feel overwhelmed or anxious after reading difficult stories online.
Shared Decision-Making Matters
We encourage open discussions regarding treatment options in our office. Medical decisions should involve patient and caregiver participation, with a clear understanding of available approaches and potential risks and benefits.
We encourage patients and families to become informed about Lyme disease and to bring questions and concerns to each appointment.
FAQ: Lyme Disease and Delayed Diagnosis
Can Lyme disease in children be mistaken for anxiety?
Yes. Some children with Lyme disease develop pain, fatigue, behavioral changes, or difficulty walking before the diagnosis becomes clear.
Related Article
To read the complete New York Times article, click below.
When the Diagnosis Is Rare, Parents May Know More Than Professionals
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
