Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group
Abstract Objective: Chronic Lyme disease has been a poorly defined term and often dismissed as a fictitious entity. In this paper, the International Lyme and Associated Diseases Society (ILADS) provides its evidence-based definition of chronic Lyme disease. Definition: ILADS defines chronic Lyme disease (CLD) as a multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months. The illness is the result of an active and ongoing infection by any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl). The infection has variable latency periods and signs and symptoms may wax, wane and migrate. CLD has two subcategories, CLD, untreated (CLD-U) and CLD, previously treated (CLD-PT). The latter requires that CLD manifestations persist or recur following treatment and are present continuously or in a relapsing/remitting pattern for a duration of six months or more. Methods: Systematic review of over 250 peer reviewed papers in the international literature to characterize the clinical spectrum of CLD-U and CLD-PT. Conclusion: This evidence-based definition of chronic Lyme disease clarifies the term’s meaning and the literature review validates that chronic and ongoing Bbsl infections can result in chronic disease. Use of this CLD definition will promote a better understanding of the infection and facilitate future research of this infection. ...WORKSHOP on Lyme and Tick-borne diseases
HPRU-EZI/ RIPL/ NHS Lyme and tick-borne disease research in the UK: A workshop, addressing the scientific uncertainties On Friday, 22nd November, 2019, at a tick-borne disease workshop in Liverpool, we were invited along with other charities and patient groups to attend and contribute orally in a ten minute slot, our top 5 research suggestions. This meeting was held jointly by: Health Protection Research Unit in Emerging and Zoonotic Infections (HPRU-EZI) Public Health England (RIPL) The National Institute for Health and Care Excellence (NICE) Liverpool School of Tropical Medicine (LTSM) Health Protection Scotland (HPS) We were very pleased to be given the opportunity to present our top research priorities, plus other important points needing equal and urgent consideration and attention. We are pleased to be able to inform you that the report is now publicly available through the NIHR HPRU EZI website at the following link: http://www.hpruezi.nihr.ac.uk/about-us/news-and-events/lyme-and-tick-borne-disease-research-in-the-uk/ We would like it to be noted that had we been given the opportunity to present, as seems to be the norm for most other illnesses, the 10 top research priorities, then the subject of tick related ecology would have been included. However, as we were limited to just 5 top research priorities, we focused on what we felt were the most pertinent from the perspectives of useful inclusion for medical research. Our five research priorities presented were:- What is the seroprevalence of Borrelia infections and other tick-borne diseases in cohorts of the general population and at-risk occupations and lifestyles. What are the test methods that have the highest sensitivity and specificity for all stages of...EMERGING TICK-BORNE PARASITE DETECTED IN UK
Issued: Wed, 20 Nov 2019 00:01:00 GMT Scientists have detected an exotic tick-borne parasite within sheep in the North of Scotland, according to a new study. The research, by scientists at the University of Glasgow’s School of Veterinary Medicine and Institute of Biodiversity, Animal Health and Comparative Medicine, was published today in Emerging Infectious Diseases, the journal of the Centre for Disease Control (CDC). The study reports that this is the first time this organism, called Babesia venatorum (B. venatorum), has been identified in animals in the UK, and the first time it has been found in sheep anywhere in the world. Go to this link to read further https://www.gla.ac.uk/news/headline_698767_en.html Sheep as Host Species for Zoonotic Babesia venatorum, United Kingdom...Incidence of Lyme disease in the UK.
Published today is a new and highly important research paper by Victoria Cairns and colleagues, Christopher Wallenhorst, Stephan Rietbrock, Carlos Martinez. This paper gives a clear example of incidences from an anonymized GP database covering 8.4 million patients throughout the UK. It would have been an almighty task to analyze and identify Lyme disease patients and bring this research to the fore. The difficulties accessing this type of information needed for research studies is fraught with obstacles, and this point was made clear by researchers at our symposium in July, 2018. https://bmjopen.bmj.com/content/9/8/e025916 The numbers of patients not included in the paper will consist of those who were not properly identified as having had a tick bite, a rash, stiff neck, visual disturbances, balance problems, nor a multitude of other symptoms related to bites from infected ticks. It is important to mention that Lyme disease is only part of the problem, and many more infections make up the cocktail associated with infected ticks. Taking into account the vast numbers of patients not included on the database, it is more than safe to say that the true numbers of patients who have been let down by lack of suitable specialist knowledge, which includes accurate testing methods, will amount to multitudes of missed opportunities for treatment. We thank Dr Victoria Cairns and her colleagues for their determination and...Our responses to the Quality Standards NICE Lyme Disease Guidelines
Our responses to the Quality Standards NICE Lyme Disease Guidelines can be viewed below. As stakeholders, we take the stance of no confidence in the National Institute for Health and Care Excellence (NICE) and its inherent bias and ownership of Lyme Disease treatment and advice. Their fundamental lack of understanding and ability to successfully deal with the Lyme Disease situation is of utmost concern. We feel patients and their physicians will be placed at dangerous and unnecessary long term risks by these poor efforts of Guidelines and Quality Standards. For these reasons we are unwilling to endorse the Lyme Quality Standards. These draft quality standards fail all patients with long standing Lyme disease and accompanying co-infections. It is well known that there are no suitably qualified UK tick-borne illness Infectious Disease consultants in place to advise or treat patients with Lyme Disease. It is disingenuous to pretend or claim that there is UK...LYME DISEASE TOOLKIT – Royal College of General Practitioners
Lyme disease is a bacterial infection caused by the spirochaete Borrelia burgdorferi. It occurs worldwide, is increasing in incidence and is the most common vector-borne disease in the northern hemisphere. Whilst early recognition and treatment lead to resolution of the illness for many patients, late or missed diagnosis may result in persistent, debilitating symptoms. Although Lyme disease symptoms may often be non-specific and difficult to recognise, heightened awareness amongst primary care clinicians will increase the likelihood of patients receiving early and effective treatment. Clinicians should be aware of the genuine scientific uncertainties and on-going research in relation to both diagnosis and treatment of this disease. This toolkit is a user-friendly guide to Lyme disease for general practitioners and other health care professionals. Patients and the general public may also find it helpful. Key facts Introduction – Ticks and Lyme disease Diagnosing Lyme disease Testing for Lyme disease and other tick-borne infections Treating Lyme disease Persistent symptoms and misdiagnosis Lyme disease uncertainties and research Resources for education, training and quality improvement Support for patients, carers and the general public Information for NHS managers and commissioners The Lyme disease toolkit has been developed in partnership with the Clinical Innovation And Research Centre. Please send any comments or suggestions to circ@rcgp.org.uk. https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/lyme-disease-toolkit...LYME DISEASE AWARENESS
...CRYPTO-INFECTIONS CONFERENCE
...Neil Spector MD, Oncologist, his views and comments on Tick-borne illnesses from his personal experience-
“To me, Lyme is the infectious disease equivalent of cancer. We don’t talk about cancer as just one disease anymore, and we should stop talking about Lyme this way. There are so many strains and co-infections. When you are bitten by a tick, you can get five or ten different infections at the same time. I also find it ludicrous to call all tick-borne disease, Lyme Disease. In breast cancer, we don’t just say, ‘You have breast cancer’,”because that simply doesn’t mean anything anymore. The language is important because it has a bearing on treatment. With cancer, we know that administering one algorithmic form of treatment doesn’t work. You have to understand the wiring that drives those tumors, the nuances, the mutations–and target them specifically. I think we need to start thinking this way about tick-borne diseases”. -Neil L. Spector, MD. USA, Oncologist, and heart transplant recipient due to a tick...
