Causes of Treatment Delays for Lyme Disease Patients
I identified several factors that contributed to Lyme disease treatment delays in 15 patients. All 15 individuals failed their initial antibiotic treatment. In many cases, their illness might have been mitigated if diagnosis and treatment had occurred during the early stages of the disease.
These 15 patients were part of a case series of 100 Lyme disease patients treated at a single private medical practice. The study was published in the Journal of Evaluation in Clinical Practice.2 All patients met the CDC two-tier testing criteria with at least 5 of 10 IgG Western blot bands.
Treatment Delays for Lyme Disease
Case 1
A 35-year-old man presented with an erythema migrans rash. One week later he had a blood test that was negative and he was never re-tested. He was not treated for Lyme disease for 8 years.
Failure to treat an erythema migrans rash despite a negative test.
Case 2
A 16-year-old girl was diagnosed with Epstein-Barr virus and streptococcal infection. Her tonsils were removed. She was not treated for Lyme disease for 8 years.
Failure to consider Lyme disease.
Case 3
A 57-year-old woman had a tick bite followed by a swollen knee. She was diagnosed with a meniscus tear and was not treated for Lyme disease for 6 years.
Failure to consider Lyme disease.
Case 4
A 16-year-old girl developed Bell’s palsy and later struggled academically. She was not treated for Lyme disease for 6 years.
Failure to recognize Lyme disease and its impact on school performance.
Case 5
A 31-year-old man developed a 6 × 6 inch rash but was not treated for Lyme disease for 4 years.
Failure to recognize an erythema migrans rash.
Case 6
A 35-year-old man with typical Lyme symptoms was told by two physicians that he did not have Lyme disease. Treatment was delayed for 3 years.
Failure to seek a second opinion from a physician experienced with chronic manifestations of Lyme disease.
Case 7
A 42-year-old woman developed Bell’s palsy. Lyme disease was dismissed after a negative spinal tap. She was not treated for 3 years.
Overreliance on negative spinal tap results.
Case 8
A 22-year-old man developed sinusitis and underwent two sinus surgeries. Lyme disease treatment was delayed for 17 months.
Failure to consider sinusitis as a possible Lyme manifestation.
Case 9
A 75-year-old man developed aches, pains, and walking difficulty. Symptoms were attributed to prior heart attack and stroke. Treatment was delayed for 15 months.
Failure to consider Lyme disease.
Case 10
A 50-year-old man was treated for rotator cuff and meniscus injuries. Lyme disease treatment was delayed for 8 months.
Failure to consider Lyme disease.
Case 11
A 36-year-old woman had a rash and a positive Lyme disease test but was told she did not have Lyme disease. Treatment was delayed for 6 months.
Failure to recognize erythema migrans and seek specialist care.
Case 12
A 75-year-old man presented with knee swelling (“water on the knee”) and was treated with diuretics and steroids. Lyme disease treatment was delayed for 4 months.
Failure to recognize Lyme arthritis.
Case 13
An 18-year-old woman developed a 4 × 4 inch rash followed by pericarditis. She received steroids instead of antibiotics. Treatment was delayed for 3 months.
Failure to recognize erythema migrans.
Case 14
A 37-year-old man with disseminated Lyme rashes and asthmatic bronchitis was treated with steroids rather than antibiotics. Treatment was delayed for 2 months.
Failure to recognize disseminated Lyme rash.
Case 15
A 20-year-old woman was treated three times for cellulitis before Lyme disease was recognized. Treatment was delayed for 2 months.
Failure to recognize erythema migrans.
Editor’s Perspective
These 15 patients ultimately improved after retreatment or treatment of co-infections. However, earlier diagnosis would likely have reduced suffering and improved outcomes.
These cases highlight several factors that contribute to Lyme disease treatment delays. Because the cases came from a single practice, they may not represent all patients. Nevertheless, they illustrate common diagnostic challenges.
Lyme disease patients should not have to suffer for months or years before receiving treatment. Additional research is needed to better understand the causes of diagnostic and treatment delays.
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