Human Rights Violations of Patients with Lyme Disease

“The many egregious practices related to the 2006 IDSA Lyme guidelines have perpetrated fourteen human rights violations.”

 –Jenna Luché- Thayer 


Listen to Dr. Risk's interview with Jenna Luché- Thayer.

Listen to Dr. Risk's Radio Show on Lyme Disease.

The World Health Organization (WHO) has recognized the existence of Lyme Disease and has set ICD codes for it, meaning that patients have the legal right to treatment, testing, and security as a patient. However, many doctors and medical professionals still deny the existence and severity of the disease, leading to human rights violations for patients and their advocates. This includes the right to the highest attainable standard of health, freedom from torture and cruel treatment, right to life, privacy, and confidentiality, and more. It is important for patients to educate themselves and speak up for their rights, and for the medical community to acknowledge the overwhelming evidence and take Lyme Disease seriously.

Human rights violations of patients and their human rights defenders:

  • Right to highest attainable standard of health
  • Right to freedom from torture and cruel, inhuman and degrading treatment.
  • Right to life.
  • Right to liberty and security of person.
  • Right to privacy and confidentiality.
  • Right to information.
  • Right to bodily integrity.
  • Right to participation in public policy.
  • Right to no discrimination and equality.
  • Right to decent working conditions.
  • Right to freedom of association.
  • Right to due process.
  • Right to a remedy.


It is important to note that the 2006 IDSA (Infectious Diseases Society of America) guidelines on Lyme Disease have been criticized by patient groups and some medical practitioners for being too narrow and leading to underdiagnosis and mistreatment of the disease. Jenna Luché-Thayer, a patient advocate, has claimed that these guidelines have led to 14 human rights violations, including the right to the highest attainable standard of health, freedom from torture and cruel treatment, and the right to life.

In 2018, the World Health Organization (WHO) recognized the existence of Lyme Disease and set ICD codes (International Statistical Classification of Diseases and Related Health Problems) for it. This means that patients have the right to treatment, testing, and security as a patient, regardless of whether their country's medical system recognizes the disease. The codes listed below can be provided to doctors to help them understand that Lyme Disease is real and can affect the person in front of them. It is important for patients to be informed about their rights and to advocate for themselves in seeking proper diagnosis and treatment for Lyme Disease.

ICD11 Codes:

1C1G Lyme borreliosis

1C1G.0 Early cutaneous Lyme borreliosis

1C1G.1 Disseminated Lyme borreliosis

1C1G.10 Lyme Neuroborreliosis

1C1G.11 Lyme carditis

1C1G.12 Ophthalmic Lyme borreliosis

1C1G.13 Lyme arthritis

1C1G.14 Late Cutaneous Lyme borreliosis

1C1G.1Y other specified disseminated Lyme borreliosis

1C1G.1Z Disseminated Lyme borreliosis, unspecified

1C1G.2 Congenital Lyme borreliosis

1C1GY Other Specified Lyme borreliosis

6D85.Y Dementia due to other specified diseases classified elsewhere; dementia due to Lyme disease

9C20.1 Infectious panuveitis; Infectious panuveitis in Lyme

9B66.1 Infectious intermediate Chorioditis; infectious intermediate uveitis in Lyme disease

8A45.0Y Other specified white matter disorders due to infections; Central Nervous System demyelination due to Lyme borreliosis