The controversy

In the field of Lyme disease, two major schools of thought coexist internationally: the IDSA (Infectious Diseases Society of America) and the ILADS (International Lyme and Associated Diseases Society). Both groups offer guidelines based on scientific data, but their interpretation of the facts, their understanding of the disease, and their clinical recommendations differ considerably.

• IDSA: proposes a narrow, standardized definition of Lyme disease based on well-established clinical manifestations. It considers the disease to be acute, generally treatable with a short course of antibiotics.
• ILADS: has adopted a broader and more progressive approach, recognizing atypical, persistent, or complex forms, as well as persistent symptoms often encountered in clinical practice.

• IDSA: focuses on strict criteria, based mainly on conventional serological tests. It remains cautious about diagnoses made without laboratory confirmation.
• ILADS: acknowledges the current limitations of diagnostic tests (varying sensitivity and specificity depending on the stage of the disease), and values clinical experience, notably in cases where symptoms are suggestive but tests are negative.

• IDSA: recommends short, uniform treatments, often limited to 2 to 4 weeks. It focuses on the risks associated with over-treatment, such as side effects and antibiotic resistance.
• ILADS: proposes an individualized approach to treatment, considers patient response, symptom severity and quality of life. In some cases, it considers that prolonged or adapted treatments are necessary and justified.

While IDSA recommendations have long been considered the standard, they do not always reflect the diversity of clinical courses observed in patients, especially those with persistent symptoms despite initial treatment. Their guidelines were also removed from the US National Guidelines Clearinghouse as they no longer met the required methodological standards.

However, the ILADS guidelines are still recognized as meeting current rigorous scientific standards, while leaving room for personalized medicine. This approach allows clinicians to tailor their treatment to each patient, assessing the risks and benefits carefully and bearing in mind the genuine suffering of patients, who often find themselves in a medical limbo.

Given that knowledge is evolving but clear answers are still lacking, it seems ethical, prudent, and humane to adopt a flexible, patient-centred approach. We hope that Quebec will adopt an approach based on clinical judgment, active listening, and a comprehensive assessment of needs, an approach that we believe is currently the most effective way to address the challenges of persistent Lyme disease and its co-infections.

In Quebec, there is a severe shortage of LLMD physicians who are truly educated about the complexity of Lyme disease. This absence creates a major gap in the healthcare system.

As a result, many Quebecers with persistent symptoms of the disease find themselves without adequate care. Without local resources, many are forced to seek help outside the province, often in the United States, where experienced LLMDs practice. This means costly travel, treatment not covered by the public health system, and a heavy financial burden for patients who are already vulnerable due to their illness.

This reality highlights the urgent need to train more healthcare professionals in a broader, more nuanced, patient-centred approach to better meet the growing needs of this population.