28 apr

Definition of Lyme disease Dementia has improved

“The World Health Organization’s definition of Definition of Lyme disease Dementia has improved.

Dementia is a rapidly expanding and fatal neuro degenerative illness that may affect all persons. Usually it effects the elderly

Implications and challenges regarding the new definition follow.


Lyme is a bacterial infection

Both Lyme Borreliosis and relapsing fever borreliosis have stages of dissemination and multiple varieties of symptoms afflicting multiple bodily systems in relapsing remitting fashion —similar to syphilis, another spirochetal infection. Lyme is transmitted by the bite of infected ticks, by congenital transmission (from mother to children) and may be transmitted by other means.

If left untreated the infection can spread to joints, the heart, and the nervous system and all organs; this may cause life-threatening complications, including dementia. Early signs of infection include fever, headache, fatigue, and a characteristic skin rash called erythema migrans.

What is the international classification of diseases or ICD?

The ICD is ‘a common global language’ for health professionals. ICD10 was based on approximately 14,400 codes whereas ICD11 represents more than 55,000 codes for disease diagnoses and identifying injuries and causes of death. The ICD are also used to identify health trends, progress and threats and statistics worldwide.

ICD is used by national health systems and program managers, data specialists, policy makers and others who allocate health resources and track national and global health.

From ICD10 to ICD11

Jenna Luché-Thayer, the founder and director of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes, reported,

WHO has recognized Lyme borreliosis to be a ‘disease of consequence’ since the 1990s, but the Lyme codes have remained basically unchanged and many definitions of complications from Lyme disease have also been omitted. [Footnote 1], [Footnote 2]

Luché-Thayer reports the Ad Hoc Committee appears to have executed a comprehensive approach that successfully establish new codes for life-threatening complications from Lyme, and improved the definitions of life-threatening complications, including dementia.

This is a major achievement for the global Lyme community because it is the first time in over 25 years that these serious complications have been officially recognized by the WHO.

This is the second change of the ICD11 Lyme dementia definition. The first Lyme dementia definition implied the requirement a Lyme diagnosis required an autopsy. [Footnote 1] [Footnote 2] [Footnote 3]

The first definition implied the need for an autopsy for diagnosis whereas the second definition recognizes clinical diagnosis and encourages the use of sophisticated imaging and laboratory technologies.

“Dementia due to Lyme disease, a disease caused by an infection with the bacteria Borrelia burgdorferi, with supportive clinical, without another identifiable cause of cognitive dysfunction.”

Implementation of this new definition will however, face significant financial, political and cultural challenges.

It appears elder abuse of those living with Lyme and Lyme dementia is also an important public health problem.


1. cultural challenges

Cultural challenges include practices related to the status and respect for the elderly. These include practices of discrimination against the elderly — including the poor, uneducated, rural groups of elderly and particularly elder women.

Factors that may increase the risk of elder abuse include:

  • ageist stereotypes
  • erosion of the bonds between generations of a family
  • the distribution of power and material goods within families
  • abandonment of the elderly
  • lack of funds to pay for care.

2. elder abuse

Experts report:

  • Rates of elder abuse are high in the healthcare sector, including medical institutions
  • Elder abuse is predicted to increase as many countries are experiencing rapidly ageing populations
  • Elder abuse includes the denial of medical care

3. no medical consensus regarding the treatment of Lyme

There are two international treatment guidelines for Lyme borreliosis, one is the 2006 guidelines written by the Infectious Diseases Society of America (IDSA) and the second is the 2016 Guidelines written by International Lyme and Associated Disease Society (ILADS).

In the case of Lyme disease, the differential diagnosis of dementia remains largely unpracticed.

4. big business of dementia

  • spiraling medical costs from the ‘big business of dementia’ are showing show no signs of decreasing. It is reported that decades of research have resulted in treatment failure, enrichment for few and patient bankruptcy and death
  • strong evidence showing Lyme dementia can be effectively treated with relatively inexpensive and accessible treatments largely remains ignored

5. Increase in persons living with dementia

According to data from World Population Prospects: the 2017 Revision, the number of older persons — those aged 60 years or over — is expected to more than double by 2050 and to more than triple by 2100, rising from 962 million globally in 2017 to 2.1 billion in 2050 and 3.1 billion in 2100.

This data states

  • Globally, population aged 60 or over is growing faster than all younger age groups
  • In 2017, there are an estimated 962 million people aged 60 or over in the world, comprising 13 per cent of the global population
  • The number of older persons in the world is projected to be 1.4 billion in 2030 and 2.1 billion in 2050, and could rise to 3.1 billion in 2100
  • Globally, the number of persons aged 80 or over is projected to triple by 2050, from 137 million in 2017 to 425 million in 2050
  • In the coming decades many countries are likely to face fiscal and political pressures in relation to public systems of health care, pensions and social protections for a growing older population.”

In summary, it now appears possible that the ICD11’s improved definition for Lyme dementia will offer a solution that improves access to affordable medical care. This may result in the improvement of the longevity, quality of life, productivity and health status of billions of persons across the globe.


Jenna Luché-Thayer


Jenna Luché-Thayer. 30+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions. Email jennaluche@gmail.com


FOOTNOTE 1: Since June 2018 release, the content of the ICD was supposed to be stable.

FOOTNOTE 2: PRESS RELEASE: Ground Breaking Recognition of Lyme Borreliosis in 11th International Classification of Diseases Published on August 1, 2018, author Jenna Luché-Thayer

FOOTNOTE 3: The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes.”

Source: LinkedIn Jenna Luché-Thayer
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