Why Lyme Disease Treatment Gets Delayed: 15 Missed Cases
Delayed Lyme disease treatment can lead to years of unnecessary illness
These 15 cases illustrate common reasons diagnosis was missed
Earlier recognition may improve outcomes and reduce suffering
I have identified several factors that might have contributed to treatment delays in 15 Lyme disease patients. All 15 subjects failed their initial antibiotic treatment. In many cases, their illness could have been mitigated had diagnosis and treatment occurred in the early stages of the disease.
These 15 patients were part of a case series which included 100 Lyme disease patients who were treated at a single private medical practice. The study was described in the Journal Evaluation Clinical Practice.2 All patients in the series met the CDC’s two-tier criteria with at least 5 out of 10 IgG positive Western blot bands.
Common causes of delayed Lyme disease treatment
Case 1
35-year-old man presented with an erythema migrans rash. One week later, he had a blood test, which was negative. He was never re-tested. The man was not treated for Lyme disease for 8 years.
Failure to treat an erythema migrans rash despite a negative test
Case 2
16-year-old girl was diagnosed with Epstein Barr and a streptococcal infection. Her tonsils were subsequently removed. She was not treated for Lyme disease for 8 years.
Failure to consider Lyme disease
Case 3
57-year-old woman had a tick bite followed by a swollen right knee. She was diagnosed with a meniscus tear. She was not treated for Lyme disease for 6 years.
Failure to consider Lyme disease
Case 4
16-year-old girl was diagnosed with Bell’s palsy. She subsequently did poorly in school. She was not treated for Lyme disease for 6 years.
Failure to consider Lyme disease; failure to associate Lyme disease as a cause of poor school performance
Case 5
31-year-old man had a 6” x 6” rash. He was not treated for Lyme disease for 4 years.
Failure to recognize an erythema migrans rash
Case 6
35-year-old man with typical symptoms. He was told he did not have Lyme disease by two doctors. He was not treated for Lyme disease for 3 years.
Failure to seek a second opinion from a doctor experienced in treating chronic manifestations of Lyme disease
Case 7
42-year-old woman with Bell’s palsy. She was told she did not have Lyme disease based upon results from a spinal tap. She was not treated for Lyme disease for 3 years.
Relied on negative spinal tap results to dismiss Lyme disease; failure to consider Lyme disease even with Bell’s palsy manifestation
Case 8
22-year-old man with sinusitis followed by two sinus operations. He was not treated for Lyme disease for 17 months.
Failure to consider sinusitis as a symptom of Lyme disease
[bctt tweet=”15 Lyme disease patients experience delays in diagnosis and treatment. Study reviews each case and possible causes behind the delays.” username=”DrDanielCameron”]
Case 9
75-year-old man with aches and pains and walking difficulties. He was told the symptoms were related to a previous heart attack and stroke. He was not treated for Lyme disease for 15 months.
Failure to consider Lyme disease
Case 10
50-year-old man with a rotator cuff and meniscus tear. He was not treated for Lyme disease for 8 months.
Failure to consider Lyme disease
Case 11
36-year-old woman with an ill-defined rash with a positive Lyme disease test. She was told it was not Lyme disease by her doctor. She was not treated for Lyme disease for 6 months.
Failure to recognize an erythema migrans rash; failure to seek a second opinion from a doctor experienced in treating chronic manifestations of Lyme disease
Case 12
75-year-old man with edema. He was treated initially with diuretics followed by steroids for “water on knee.” He was not treated for Lyme disease for 4 months.
Failure to associate “water on knee” as a symptom of Lyme disease
Case 13
18-year-old woman with a 4” x 4” rash followed by pericarditis. She was treated with steroids instead of antibiotics. She was not treated for Lyme disease for 3 months.
Failure to recognize an erythema migrans rash
Case 14
37-year-old man with disseminated Lyme disease rashes and asthmatic bronchitis. He was treated with steroids instead of antibiotics. He was not treated for Lyme disease for 2 months.
Failure to recognize an erythema migrans rash
Case 15
20-year-old woman was treated three times for cellulitis. She was not treated for Lyme disease for 2 months.
Failure to recognize an erythema migrans rash
Common patterns behind delayed Lyme disease treatment
Several themes emerged from these 15 cases including failure to recognize erythema migrans rashes, failure to consider Lyme disease in the differential diagnosis, overreliance on negative laboratory testing, and delays in obtaining an evaluation by an experienced physician.
Editor’s Note: These 15 patients did well with retreatment or treatment of a co-infection. It would have been easier to treat in a timely manner. Timely treatment would also avoid needless suffering.
There are multiple factors associated with treatment delays. These cases are reflective of only one practice and may not be generalizable to the broader population. Other factors may have contributed to these treatment delays.
Lyme disease patients should not have to suffer for months to years before being treated. More research on the causes behind treatment delays is needed.
Frequently Asked Questions
What causes delayed Lyme disease diagnosis?
Common causes include failure to recognize an erythema migrans rash, attributing symptoms to other conditions, reliance on negative test results, and failure to consider Lyme disease in the differential diagnosis.
Can Lyme disease be missed for years?
Yes. Several patients in this series experienced delays of three to eight years before receiving treatment for Lyme disease.
Can a Lyme disease test be negative early in the illness?
Yes. Early testing may be negative even in patients with an erythema migrans rash, which remains a clinical diagnosis.
What happens when Lyme disease treatment is delayed?
Delayed treatment may allow symptoms to persist or progress, potentially making recovery more difficult and prolonging unnecessary suffering.
Clinical Takeaway
These 15 cases illustrate how missed rashes, diagnostic uncertainty, competing diagnoses, and delayed recognition can postpone Lyme disease treatment for months or even years.
Recognizing Lyme disease early and considering it in the appropriate clinical setting may reduce treatment delays and improve patient outcomes.
Related Articles
6 reasons for delayed treatment of Lyme disease
What does a Lyme disease rash look like?
Study finds misdiagnosis and delayed diagnosis common for Lyme disease patients
References
- Hirsch AG, Poulsen MN, Nordberg C, et al. Risk Factors and Outcomes of Treatment Delays in Lyme Disease: A Population-Based Retrospective Cohort Study. Front Med (Lausanne). 2020;7:560018.
- Cameron DJ. Consequences of treatment delay in Lyme disease. J Eval Clin Pract. 2007;13(3):470-472.
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
This is very interesting and is certainly the case for my daughter who has been undiagnosed for years. What i really want to know now is if these poor people are all feeling better?
These 15 patients did well with retreatment or treatment of a co-infection. It would have been easier to treat in a timely manner. Timely treatment would also avoid needless suffering.
Misdiagnosis of an EM rash as ringworm has been reported several times in the UK.
It still happens in the US