When Doctors Miss Lyme Disease: The Hidden Epidemic of Misdiagnosis
She was told it was depression. Then fibromyalgia. Then anxiety. It took three years and five doctors before anyone tested her for Lyme disease. By then, what could have been treated in weeks had become a years-long battle.
This pattern repeats itself in my practice every week. After 37 years of treating Lyme disease, I’ve learned that misdiagnosis isn’t the exception—it’s often the rule. Patients are labeled with MS, Alzheimer’s, chronic fatigue syndrome, bipolar disorder, or a dozen other conditions before Lyme disease is even considered.
The consequences are devastating: delayed treatment, progression to chronic illness, loss of trust in medicine, and years of unnecessary suffering.
This page organizes decades of published case studies and clinical patterns showing how—and why—Lyme disease is so frequently misdiagnosed. Understanding these patterns can help patients advocate for proper testing and help clinicians recognize when to look deeper.
Why Lyme Disease Is So Often Misdiagnosed
Lyme disease mimics other conditions because the Borrelia burgdorferi spirochete can affect virtually any organ system in the body. It doesn’t stay localized—it disseminates through blood, reaches the nervous system, triggers immune dysregulation, and produces symptoms that look neurologic, psychiatric, rheumatologic, or cardiac.
Several factors contribute to missed diagnoses:
Many patients never see a tick or a rash. Up to 30% of Lyme patients don’t recall a tick bite, and only 20% develop the classic “bull’s-eye” rash. Without these obvious clues, clinicians often don’t consider Lyme disease as a possibility.
Lyme tests have significant limitations. Standard two-tier testing misses early infections and can remain negative in patients with neurologic or late-stage disease. When tests come back negative, doctors often stop investigating—even when symptoms clearly suggest infection.
Symptoms overlap with common conditions. Fatigue, brain fog, joint pain, mood changes, and dizziness occur in fibromyalgia, chronic fatigue syndrome, MS, and depression. When these conditions are diagnosed first, Lyme disease may never be reconsidered—even when treatment fails.
Medical dismissal is common. When patients present with multisystem complaints that don’t fit one diagnosis, they’re often told their symptoms are stress, anxiety, or psychosomatic. This pattern of dismissal delays diagnosis and erodes patient trust. For more on this, see Medical Dismissal in Lyme Disease.
Clinicians aren’t trained to recognize Lyme disease. Despite affecting over 300,000 people annually in the U.S., Lyme disease receives minimal attention in medical school curricula. Many doctors have never diagnosed a case and don’t know what to look for beyond the textbook presentation.
Frequently Asked Questions
Why is Lyme disease so frequently misdiagnosed?
Lyme disease is frequently misdiagnosed because many patients never see a tick or develop a rash, standard tests have significant limitations and often return false negatives, symptoms overlap with common conditions like fibromyalgia and MS, and most clinicians receive minimal training in recognizing Lyme disease beyond textbook presentations.
What conditions is Lyme disease most commonly misdiagnosed as?
Lyme disease is most commonly misdiagnosed as multiple sclerosis, fibromyalgia, chronic fatigue syndrome, depression, anxiety disorders, Alzheimer’s disease or dementia, rheumatoid arthritis, lupus, ADHD in children, and more recently, Long COVID. The infection can affect virtually any organ system, producing symptoms that mimic dozens of other conditions.
Can psychiatric symptoms be caused by Lyme disease?
Yes. Lyme disease and its co-infections can produce severe psychiatric symptoms including depression, anxiety, panic attacks, rage episodes, obsessive-compulsive behaviors, and even psychosis. These symptoms result from neuroinflammation affecting the central nervous system. When infection is the underlying cause, psychiatric medications alone often provide limited relief, but symptoms may improve with appropriate antibiotic treatment.
How can I tell if I’ve been misdiagnosed with another condition when I actually have Lyme disease?
Consider Lyme disease if you have a diagnosis that isn’t responding to standard treatment, symptoms that fluctuate unpredictably, multisystem complaints that don’t fit one diagnosis, a history of outdoor activities or living in endemic areas, or symptoms that began after a period of illness. Lyme disease should be reconsidered particularly when fatigue, brain fog, joint pain, or neurologic symptoms persist despite appropriate treatment for other diagnosed conditions.
Can Lyme-related neurologic symptoms be reversed?
In many cases, yes. Unlike progressive neurodegenerative diseases, Lyme-related cognitive decline, neuropathy, and even some motor symptoms can improve or resolve with appropriate antibiotic treatment—particularly when diagnosed and treated before permanent damage occurs. This is why early recognition is critical. Published case reports document dramatic improvement in patients misdiagnosed with dementia, Parkinson’s-like symptoms, and MS when the underlying Lyme infection was properly treated.
Clinical Takeaway
Misdiagnosis of Lyme disease is not an isolated problem—it’s a systemic failure that affects hundreds of thousands of patients annually. The consequences extend far beyond delayed treatment: patients lose years to progressive illness, trust in medicine erodes, and treatable infections become chronic conditions.
As clinicians, we must recognize that Lyme disease should be in the differential diagnosis for any patient presenting with unexplained neurologic, psychiatric, rheumatologic, or multisystem symptoms—particularly when standard treatments fail and symptoms fluctuate unpredictably.
For patients navigating this diagnostic maze, understanding these misdiagnosis patterns can help you advocate for appropriate testing, seek second opinions, and persist when initial evaluations are incomplete. Your symptoms are real. Misdiagnosis is common. And proper diagnosis—when it finally comes—can be life-changing.
Psychiatric Misdiagnoses: When Infection Looks Like Mental Illness
Lyme disease and its co-infections can produce profound psychiatric symptoms—depression, anxiety, rage, panic attacks, obsessive-compulsive behaviors, and even psychosis. When these symptoms appear without obvious physical complaints, patients are often diagnosed with primary psychiatric illness and never tested for infection.
In children, behavioral changes may be attributed to ADHD, oppositional defiant disorder, or autism spectrum disorder when the underlying cause is neuroinflammation from tick-borne illness. These patterns are especially concerning because psychiatric medications provide limited relief when infection is driving symptoms.
Depression and Mood Disorders:
- “Just Depression,” They Said — But It Was Lyme Disease
- Lyme Brain Fog and Anxiety: When Psychiatric Symptoms Have a Medical Cause
- Can You Have Lyme Disease and Not Know It? (includes bipolar misdiagnosis cases)
Obsessive-Compulsive and Anxiety Disorders:
Conversion Disorder and Functional Neurologic Symptoms:
Pediatric Behavioral and Developmental Diagnoses:
- 7-Year-Old Girl with Lyme Disease Presenting as Attention Deficit Disorder
- Autism (ASD) Symptoms Improve Following Treatment for Lyme Disease
- Oppositional Behavior in Children with Lyme Disease
- Adolescents and Lyme Disease (ADHD, ODD, OCD patterns)
- 7-Year-Old Girl with PANDAS and Lyme Disease
Comprehensive Psychiatric Overviews:
- Neuropsychiatric Lyme Disease
- Neuropsychiatric Lyme Disease: Symptoms, Patterns, Misdiagnosis
- Neuropsychiatric Presentations in Children and Adolescents
Neurologic Misdiagnoses: When Lyme Mimics Progressive Disease
Lyme neuroborreliosis can produce symptoms nearly identical to multiple sclerosis, ALS, Parkinson’s disease, and dementia. MRI findings may show white matter lesions indistinguishable from MS. Cognitive decline may progress rapidly, mimicking Alzheimer’s disease. Motor symptoms may suggest ALS or Parkinson’s.
The critical difference: many Lyme-related neurologic symptoms are reversible with appropriate treatment. But when infection is missed and patients are diagnosed with progressive neurodegenerative disease, treatment opportunities are lost.
Multiple Sclerosis (MS) and Demyelinating Disease:
- Lyme Misdiagnosed as MS, Lupus, Fibromyalgia: Why It Happens
- Why Does Lyme Disease Mimic MS or Fibromyalgia?
Motor Neuron Disease and Movement Disorders:
Dementia and Cognitive Decline:
- Lyme Disease or Dementia?
- Can Lyme Disease Cause Dementia?
- Lyme and Dementia: When Brain Fog Isn’t Alzheimer’s
- Can Lyme Disease Cause Cognitive Dysfunction or Dementia?
- Reversible Causes of Dementia and Normal Pressure Hydrocephalus (Kris Kristofferson case)
- She Was Told It Was Aging — It Was Lyme All Along
Peripheral Neuropathy and Sensory Symptoms:
- Numbness and Tingling in Lyme Disease: A Full-Body Case Study
- One-Sided Symptoms in Lyme Disease
- Lyme Disease Balance Problems and Joint Instability
Vision and Cranial Nerve Involvement:
CNS Infections:
- Case Report: Meningitis Secondary to Lyme Disease
- Case Report: Lyme Neuroborreliosis More Common in Children
Rheumatologic Misdiagnoses: When Joint Pain Isn’t Arthritis
Lyme arthritis can mimic rheumatoid arthritis, lupus, fibromyalgia, and other rheumatologic conditions. Patients may be diagnosed with autoimmune disease and treated with immunosuppressive medications when the underlying cause is infection.
Fibromyalgia, in particular, shares striking symptom overlap with chronic Lyme disease: widespread pain, fatigue, sleep disturbance, and cognitive dysfunction. Some patients diagnosed with fibromyalgia improve significantly when treated for Lyme disease and co-infections.
- Lyme Disease and Fibromyalgia: Could It Be Misdiagnosed?
- Lyme Misdiagnosed as MS, Lupus, Fibromyalgia: Why It Happens
Post-Infectious Confusion: Lyme Disease and Long COVID
Since 2020, Long COVID has become a common diagnosis for patients with persistent fatigue, brain fog, and autonomic dysfunction following viral illness. But not all post-infectious syndromes are viral.
Some patients labeled with Long COVID never had COVID-19—or recovered fully from COVID before developing new symptoms months later. In these cases, undiagnosed Lyme disease may be the true cause. The symptom overlap is striking, but the treatments differ significantly.
- Lyme Disease Misdiagnosed as Long COVID
- Case Study: Lyme Disease in Patient with Long COVID
- Long COVID & Lyme Connection: Distinguishing Post-Infectious Syndromes
Dermatologic Misdiagnoses: When the Rash Isn’t What It Seems
Erythema migrans rashes are frequently misdiagnosed as shingles, cellulitis, spider bites, or allergic reactions. This is particularly dangerous because misdiagnosis leads to inappropriate treatment—antiviral medications for presumed shingles or antibiotics that don’t treat Lyme disease.
Even when patients present with a rash and a known tick bite, the diagnosis is missed if the rash doesn’t look like the classic “bull’s-eye” pattern that appears in only 20% of cases.
- Lyme Disease Misdiagnosed as Shingles in a 62-Year-Old Man
- Lyme Disease Skin Rash Puzzles Doctors, Leads to Misdiagnoses
- Lyme Disease Rash: What Does It Really Look Like?
Pediatric Misdiagnoses: When Children Are Dismissed
Children with Lyme disease face unique diagnostic challenges. They may not articulate symptoms clearly, behavioral changes may be attributed to normal development or family stress, and cognitive decline may be dismissed as learning disabilities.
Perhaps most troubling is the pattern of medical dismissal in pediatric cases, where children’s symptoms are labeled as “medically unexplained” rather than properly investigated for infection.
- Yale Doctor Says Children Don’t Have Lyme, But Medically Unexplained Symptoms
- Understanding Pediatric Lyme Disease
Other Medical Misdiagnoses: Cardiac, Coinfections, and Complex Cases
Lyme disease can affect the heart, causing pericarditis, myocarditis, and conduction abnormalities that may be attributed to other cardiac conditions. Co-infections with Babesia and Anaplasmosis complicate the clinical picture and are often overlooked even when Lyme disease is diagnosed.
- Case Reports: Lyme Disease Infection Causes Carditis
- Tick Bite with Lyme Disease, Babesia, and Anaplasmosis
Understanding Symptom Patterns and Persistent Illness
Recognizing misdiagnosis patterns requires understanding the full spectrum of Lyme disease symptoms—including those that persist after treatment or develop months to years after initial infection.
- 30 Hidden Lyme Disease Symptoms You Might Be Missing
- How Long Does Lyme Disease Last? Why Symptoms Can Persist
- Does Lyme Disease Stay With You Forever? Long-Term Outcomes
- Late Stage Lyme Disease: Symptoms, Complications, and What Helps
- Persistent Lyme Disease Symptoms: What You Need to Know
- How to Recover from Lyme Disease: PTLDS and Treatment Paths
- Recover From Lyme Disease: Is Full Recovery Possible?
Related Reading
- Lyme Testing & Diagnosis — Why tests miss cases and what to do when results are negative
- Medical Dismissal in Lyme Disease — When doctors don’t believe patients
- Ethics of Lyme Disease Treatment — Medical abandonment and patient autonomy
- Lyme Disease Symptoms — Comprehensive symptom guide
- Lyme Disease Recovery: What Patients Need to Know — Recovery resources and guidance
- Lyme Disease Misconceptions — Common myths that delay diagnosis
- Coinfections — Babesia, Bartonella, and other tick-borne infections
- Pediatric Lyme Disease — How Lyme presents in children