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Specific recommendations made to the WHO for the ICD 11 revision

  1. Revised ICD codes should include a more complete list of the various stages and manifestations of Lyme borreliosis and relapsing fever. 

  2. Codes for borreliosis associated with cases of sudden death due to unrecognized Lyme carditis, chronic congestive cardiomyopathies, and chronic and progressive encephalomyelitis including those with fatal outcomes, require specific delineation in ICD coding.

  3. Model borreliosis codes to reflect the scope and variability of infection, as is done with syphilis coding to include latent, serovariability and seronegative infections. Codes to specify these forms of syphilitic infection exist but are missing for Lyme disease.

  4. Congenital Lyme borreliosis requires clear articulation in the codes. 

  5. Tick-borne pathogens have been reported in a wide range domestic animals and wildlife reservoirs. There is the need to codify borreliosis - Lyme, Lyme-like and relapsing fever - as zoonoses to guide diagnosis, treatment and prophylaxis, including provisions for recreation and occupational exposures.

  1. Many patients with Lyme borreliosis and other tick-borne diseases develop varying degrees of disability, which is sometimes severe. The clinical and laboratory findings that support the recognition of disability from Lyme borreliosis and other tick-borne diseases require attention and articulation in ICD11.

  2. Codes should be revised to focus on borreliosis diseases rather than vector sources and revised to accurately reflect multiple vectors of transmission for Pathogens transmitted by body lice or soft-bodied ticks that are typically diagnosed as the cause of relapsing feverborreliosis.

  3. A single tick bite can result in transmission of a multitude of bacterial, viral or protozoal agents. For this reason, it is vital for the ICD codes to include a code for tick bites, as well as it does for spider bites and insect bites. In this way, should certain symptoms linked to tickborne illnesses manifest, medical records will link back to the tick bite incident and assist with arriving at the proper diagnosis.

  4. A number of uncoded conditions that may be caused by borreliosis should be properly noted under those conditions; as is found under the ICD10 code G01 “Meningitis in bacterial diseases classified elsewhere”.

  5. There are other tick-borne diseases, while not addressed within the scope of this paper, that deserve more articulation of their manifestations and be updated in the ICD11 by WHO. 

The following recommendations are related to the broader mandates of WHO
  • The lack of support for borreliosis research in sub Saharan Africa is reflected in under-reporting and skewed global prevalence rates. There should be effort made to improve surveillance and study of these diseases in this region.

  • There should be a concerted effort to make provisions for inclusion of Borrelia in differential diagnoses for malaria, dengue, lassa and other fevers of unknown etiology in sub Saharan Africa. This would ensure patients with clinical borreliosis are not excluded from treatment due to missed diagnoses.

  • Governmental travel guidance should integrate accurate health warnings for travelers in the countries and regions under the wide global range of borreliosis.

  • Questions on travel history should be integrated into the medical and clinical reviews of patients.

  • Studies beyond the acute presentation of borreliosis are required to investigate the biological basis for the clinical disease variability observed in humans. For example, there is a significant variation in disease presentation, which is likely due to a combination of various factors influencing pathogen-host interactions, including the virulence of the infecting Borrelia genospecies, the age, the genetic predisposition, and the immune status of the host.

  • There is an ongoing need to find promising treatments from antibiotic combinations and non- antibiotic treatments and to increase understanding regarding the transmission of borreliosis infection by other biting insects, blood transfusions, organ transplants and possible sexual transmission.