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.

Patients with Lyme Disease have been vilified by the medical establishment for years. There is an overwhelming body of evidence on the existence of acute, chronic, systemic and persistent Lyme disease, and yet patients are still denied health care, testing and treatment. This is a global epidemic spreading across all countries affected by Lyme disease (so far recorded 85 countries). It is time for change.

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.


In 2018 The World Health Organization (WHO) listened to patients and advocates and set ICD codes (International Statistical Classification of Diseases and Related Health Problems) for Lyme Disease. What does this mean for patients? Even if the country the patient resides in does not yet have the codes listed below in their medical system, this information can be given to the treating doctor to help them recognize that Lyme disease is real and can be affecting the person in front of them. The WHO is in place to protect everyone, and this recognition of Lyme disease means every Lyme patient legally has a right to treatment, testing and security as a patient. 

The codes listed below can be taken to doctors to help patients in their cause and educate doctors where their governing body may not be set up yet to do so.

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