Lyme Disease Misdiagnosis and Delayed Diagnosis Are Common
Many Lyme disease patients face years of misdiagnosis before receiving the correct diagnosis.
A study by Johnson and colleagues analyzed data from 3,903 participants in the MyLymeData registry, highlighting significant delays in diagnosis and frequent misdiagnosis.
Long Delays Before Diagnosis
More than half of patients reported prolonged delays:
- 51% took more than 3 years to be diagnosed
- 54% saw five or more clinicians before diagnosis
Notably, 45% reported early symptoms within days to weeks of tick exposure—yet diagnosis was still delayed.
Why Lyme Disease Is Missed
Several factors contributed to delayed diagnosis:
- False-negative laboratory tests (37%)
- Positive tests dismissed as false positives (13%)
- Failure to recognize early symptoms
For more, see Lyme disease test accuracy.
High Rates of Misdiagnosis
Nearly three-quarters (72%) of patients were misdiagnosed prior to receiving a Lyme diagnosis.
Common misdiagnoses included:
- Psychiatric disorders (52%)
- Fibromyalgia (43%)
- Chronic fatigue syndrome (42%)
Despite frequent psychiatric misdiagnoses, only 18% of patients reported psychiatric symptoms among their most severe complaints.
Symptom Burden and Impact
The most commonly reported symptoms were:
- Neurologic symptoms (84%)
- Fatigue (62%)
- Musculoskeletal symptoms (57%)
Patients frequently required ongoing symptom management, including sleep medications, thyroid therapy, and pain treatment.
Learn more about the impact of Lyme disease.
Clinical Perspective
Misdiagnosis and delayed diagnosis remain major barriers to timely Lyme disease care.
These findings highlight the need for improved clinical recognition, better testing strategies, and greater awareness of Lyme disease presentations.
Clinical Takeaway
Lyme disease is frequently misdiagnosed and delayed, often for years, despite early symptoms.
References:
- Johnson L et al. Big data analysis of Lyme disease outcomes. Healthcare (Basel). 2018.
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
A year ago February I finally got a western medicine blood test that shows lyme bartonella, EBV, SIRS severe mold toxicity and candida. After 25 years I still cannot be treated. I live in michigan and the closest llmd is over 200 miles. I guess I just lay here alone and isolated, and die alone
Hi madam, I am a parent of 5 year old boy who is in spectrum. he is suspected case of lyme/tics/bartonella. could you pls share name of the test which helped you to identify its lyme/bartonella? pls share this test details to my email ha************@***il.com? warm regards, harsha
igenex lab, calif. is good on lyme testings.
western blot is one i used for my positive LYME testings which was CDC positive.
bartonella….galaxy lab in NC is best for that.
igenex immublot testing for kids …. https://tinyurl.com/mt2krky9
hope this helps you a little more! hugs/prayers to you, your son, and family.