Madison Area Lyme Support Group

In a recent article entitled “Risk Factors and Outcomes of Treatment Delays in Lyme Disease: A Population-Based Retrospective Cohort Study,” Hirsch and colleagues described which Lyme disease patients were more likely to fail treatment.¹

Investigators reviewed questionnaires from 778 Lyme disease patients treated at the Geisinger Clinic, a health system in Pennsylvania. The authors determined the length of time a patient was ill before seeking medical attention, and the length of time between seeking care for Lyme disease and receiving lyme treatment.

They found that the amount of time between a patient’s initial symptom onset to treatment ranged from 0 days to 15 years.

• Nearly 3 out of 4 patients were treated within 1 month of symptom onset;
• More than 1 in 4 patients were treated more than 1 month after the onset of symptoms;
• 9% were not treated for at least 6 months after symptoms started.

Symptoms misdiagnosed

Some of the Lyme disease patients mistakenly attributed their symptoms to another condition including, the flu or virus, bug bite, allergy, skin problem, muscle or joint strain/injury, arthritis or bursitis, dehydration, overexertion, stress, and old age.

A self-reported diagnosis of chronic fatigue also increased the odds of delay. “Considering the similarity in some symptoms in the two conditions, health care providers may not have initially recognized the onset of Lyme disease symptoms as a new condition, resulting in delayed treatment,” the authors explain.

Some of the Lyme disease patients were diagnosed with other illnesses including, flu or other viral conditions, skin rashes, allergic reactions, shingles, muscle or joint injury, cellulitis or other skin conditions and insect bites.

Socioeconomic status affects treatment

Socioeconomic barriers impacted treatment. “Uninsured individuals in our study were more likely to delay contacting a medical professional for their symptoms than were individuals with private insurance.”

The delayed treatment was more likely to occur when patients were consulting with a primary care doctor versus visiting an urgent care center or emergency room.

Individuals with delayed treatment were more likely to suffer from Post-Treatment Lyme Disease Syndrome (PTLDS). PTLDS patients suffer from pain, impaired cognitive function, fatigue and poor function. The authors stressed the need to reduce the risk of treatment delays to prevent PTLDS.

Editor’s perspective:

Several of the factors associated with treatment failure are amenable to prevention. I remain opposed to the term “PTLDS” until we have a reliable test to exclude a persistent infection.

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For more:

• https://madisonarealymesupportgroup.com/2021/06/09/causes-of-treatment-delays-in-16-lyme-disease-patients/
• https://madisonarealymesupportgroup.com/2021/02/22/treatment-delays-increase-risk-of-persistent-illness-in-lyme-disease/

The longer time between onset of symptoms and treatment of Lyme disease has been associated with poor outcomes. [1] Unfortunately, delays in treatment are often reported. So, what are the causes for such delays?

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.

Treatment delays for Lyme disease

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

15 Lyme disease patients experience delays in diagnosis and treatment. Study reviews each case and possible causes behind the delays. CLICK TO TWEETCase 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

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 researcher on the causes behind treatment delays is required.