Eén kleine beet kan leiden tot een chronische ziekte. Maar hoeveel weet men eigenlijk van de ziekte van Lyme in Schotland? Komt het te weten in de BBC One Scotland documentaire ‘Disclosure – Under the Skin‘ (28’35”).
“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
- 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. 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 email@example.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
“A new study in mice sheds more light on the question of Lyme disease symptoms that persist after a “standard” course of antibiotic treatment.
These findings from Johns Hopkins University (JHU) may lead to more effective treatment for human patients with persistent Lyme disease symptoms
The study, published March 28 in Discovery Medicine, is the first to look at triple-drug combination antimicrobials in a mouse model. This is a crucial requirement before human clinical trials can begin.
First, some context
In 2017, there were an estimated 427,430 cases of Lyme disease in the United States. Studies have shown that when diagnosed and treated during the early phase of Lyme, 10-20% of patients will fail to improve after a two-to-four week course of standard antibiotics.
These persistent symptoms, which may include brain fog, pain, headache, and fatigue, have been labeled “Post-Treatment Lyme Disease Syndrome” (PTLDS) by the CDC. (Here’s why LymeDisease.org opposes the use of PTLDS as a diagnostic term.)
Patients who are diagnosed after the infection has disseminated (after four weeks or more), have an even greater chance of having persistent or recurring symptoms following standard treatment.
This new study has two major findings that I will break down in detail. But first, let’s address how Lyme persists, and the hotly debated reasons why so many patients are left with chronic symptoms following treatment for Lyme disease.
How Lyme disease persists
Borrelia burgdorferi (Bb) is the pathogen that causes Lyme disease. In its basic, or growing form, Bb lives as a cork-screw shaped spirochete.
However, when Bb encounters stress—from such factors as the environment, contents of the tick gut, the human (or mammal) immune system, or antibiotics—it will change form. Depending on the type of stress, Bb may turn into round body forms (cysts) or biofilm-like microcolonies. This is known as “pleomorphism.”
Most antibiotics are designed to target bacteria in the growing phase. However, when threatened by antibiotics, Borrelia can simply change to a slow-growing or dormant form.
This also makes it difficult to diagnose Lyme disease via standard blood cultures. Furthermore, the lack of adequate blood tests makes it harder to determine whether the infection has cleared or not.
Many animal studies have shown that Lyme can persist or resurge up to a year after standard antibiotic treatment. It has also been demonstrated in the laboratory that standard antibiotics (doxycycline, Amoxicillin) are effective against the spirochetal (growing) form of Borrelia, but ineffective against the biofilm/persister (pleomorphic) forms.
The authors of the new JHU study have shown that these pleomorphic forms are also “persister cells.” They can cause inflammation and contribute to continuing symptoms in Lyme patients. [I wrote more about “Why persister cells matter with Lyme disease” here.]
Persistent Lyme Disease
There are many reasons why symptoms might persist following standard treatment for Lyme, including:
- Individual genetics,
- Co-infections (other bacteria, fungi, parasites, viruses)
- Damage caused by the pathogen (especially with late or delayed diagnosis),
- Improper or inadequate treatment, and
- Autoimmune reaction caused by a failure of the immune system to clear the infection and/or the dead remnants of the infection.
- Persistent infection.
The new study by the JHU research team supports the idea of persistent infection and adds two more possible explanations for persistent Lyme disease (PLD).
- Biofilm/persister forms of Borrelia may cause more severe forms of the disease at the onset of illness
- Biofilm/persister forms may be able to evade standard antibiotics (e.g. Amoxicillin, doxycycline, ceftriaxone), resulting in treatment failure.
The authors propose dividing patients with PLD into two categories:
- Type I. Early development of PLD, due to biofilm/persister forms of the bacteria transmitted from the tick at the beginning of infection. (In mice, the onset of severe disease was seen as early as 9 to 21 days after infection.)
- Type II. Late development of PLD, due to initial infection not being diagnosed or treated early. Thus, the infection develops into late persistent disease, with the presence of treatment-resistant biofilm/persister bacteria.
The pleomorphic nature of Borrelia has not gained the attention it deserves in terms of severity of disease and susceptibility to antibiotics. To my knowledge, this is the first mammalian study that separately tests different antibiotics against different forms of Bb. These forms include active spirochetes, (noted as “log phase” in the chart below) and the biofilm/persister form (noted as “MC”).
In this study, researchers grew natural strains of Bb (297 and N40) in the laboratory. Then they separated the bacteria according to pleomorphic form. (See Log phase Bb and MC Bb in table below.) Finally, they injected each of the Bb forms into two separate groups of laboratory mice.
The mice were further separated into sub-groups of five. Researchers then treated each sub-group with a different antibiotic or combination of antibiotics for 30 days as follows: Saline, doxycycline (Dox), ceftriaxone (CefT), Dox+Ceft, vancomycin (Van), Van+CefT or Doxy+CefT+Daptomycin (Dap). The mice were then monitored for an additional 60 days for any relapse and persistent infection.
The conclusions of the study are really quite astonishing!
First, the researchers found that without treatment (saline group), the different pleomorphic forms of Bb caused varying degrees of severity of the disease.
Specifically, all the mice infected with the persister forms “MC Bb infection” developed more severe Lyme arthritis and Lyme carditis than those infected with the “Log phase.”
The second major finding is that not all forms of Bb were killed by the single antibiotics that are currently recommended by the CDC (doxycycline, ceftriaxone). Specifically, the researchers found that only the triple-drug combination of doxycycline+ceftriaxone+daptomycin (Dox+CefT+Dap) eradicated the infection from all the mice—even those infected with the persister forms of Bb (see table below).
The authors state, “The inclusion of persister drug daptomycin in combination with doxycycline and ceftriaxone is critical to eradicating the persistent infection.”
Dr. Ying Zhang, the lead author of the study, is encouraged by the results of the triple-drug combination. He states, “Our study provides a possible explanation of PTLDS due to persister inocula and shows persister drug combination approach is more effective at curing persistent Lyme disease. Future clinical trials are needed to evaluate if persister drug combinations could more effectively cure patients with PTLDS.”
This means that patients who are infected with persister forms of Bb at the onset, and those with late stage (or delayed diagnosis) Lyme may be predisposed to more severe infection and should be treated accordingly
The researchers propose that treating with the proper triple-combination of drugs may provide a cure for persistent symptoms of Lyme disease and are planning the design of a clinical trials to test this theory.
And that is probably the best news patients who continue to suffer with symptoms of Lyme disease have heard in a very, very long time!
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @ Email her at: firstname.lastname@example.org .”
Feng, J, Li T, Yee R, Yuan Y, Bai C, Cai M, Shi W, Embers M, Brayton C, Saeki H, Gabrielson K, Zhang Y. Stationary Phase Persister/Biofilm Microcolony of Borrelia burgdorferi Causes More Severe Disease in a Mouse Model of Lyme Arthritis: Implications for Understanding Persistence, Post-Treatment Lyme Disease Syndrome (PTLDS), and Treatment Failure. Discov Med 27(148):125-138, March 2019. http://www.discoverymedicine.com/Jie-Feng/2019/03/persister-biofilm-microcolony-borrelia-burgdorferi-causes-severe-lyme-arthritis-in-mouse-model/
De nieuwe documentaire ‘SOS LYME, een onzichtbare epidemie’ van regisseur Pim Giel is een ‘must see’. De film, een initiatief van en samenwerking tussen chronische Lyme patiënten en Stichting Happy Motion, schetst een beeld van de huidige situatie en vraagt aandacht voor de problematiek rondom de ziekte van Lyme.
Waar blijft die erkenning?
In België en Nederland krijgt de ziekte nog lang niet de erkenning die ze nodig heeft. Internationale deskundigen boeken inmiddels succes met een nieuwe internationale richtlijn (ILADS) voor de behandeling van chronische Lyme. Maar deze wordt in onze contreien nog nauwelijks erkend door de politiek, wetenschap en zorgverzekeraars. Patiënten worden aan hun lot overgelaten en moeten zelf op zoek naar mogelijke behandelingen, zorg en andere voorzieningen. Dit kost enorm veel geld, geld dat ze vaak niet (meer) hebben.
Totstandkoming dankzij crowdfunding
Bekijk vandaag nog de documentaire online voor slechts €2,75. Een bedrag dat rechtstreeks gebruikt wordt om dit project verder te financieren. Een documentaire die via crowdfuncing tot stand kwam om correcte informatie de wereld in te sturen over Lyme en co-infecties.
Meer informatie over deze documentaire? Klik hier.
Ben je heel de dag buiten geweest in de natuur? Vergeet dan zeker geen tekencheck te doen!
Let op! De nimfen zijn het voorjaar de gevaarlijkste teken, ze zijn voor het blote oog nauwelijks zichtbaar. Juist deze teekjes zijn, dankzij hun formaatje maanzaad, verantwoordelijk voor zo’n 75% van de nieuwe ziektegevallen! Je zou dus kunnen zeggen: pas op voor klein venijn!