< Back Response to Science Media Centre briefing on Lyme Disease LRC 16 Oct 2019 The views represented at the Science Media Centre briefing on 9th October 2019 and reported on in an article in the BMJ are one extreme of a diverse range of views on Lyme disease. However, there is an ever-increasing body of science showing that Lyme disease is not rare, that the tests are unreliable, that chronic illness is common, and that it involves more than 'residual symptoms' and can be life-threatening. This briefing attempted to downplay the incidence of tick-borne diseases in the UK when evidence, both scientific and anecdotal, shows it is on the increase. A recent BMJ article found that UK tick-borne Lyme disease cases may be 3 times higher than previous estimates (1), giving an estimated total of 8000 cases per annum. An editorial in the Lancet, while mentioning one critique of the study which concluded that the cases were over-estimated, stated that "the UK relies on laboratory-based surveillance, which does not lend itself to accurate incidence estimation because it can miss many patients" and "official estimates are accepted to be too low" (2). If it is accepted that the official estimates are too low, and if research has found them to be much higher, repeating official figures without mention of this study is misleading. It was stated that "fewer than one in 20 experience residual symptoms" and that there is misinformation, particularly around “chronic” or “post-treatment” Lyme disease. However, the science indicates higher levels. It is well documented in the literature that 10-20% of those treated experience treatment failure (3). They warn that patients should be "wary of seeking non-validated tests, many of which involve samples being sent abroad". However, they fail to mention that UK testing is acknowledged to be unreliable. Standard UK testing relies on detecting antibodies to the spirochaetes when it is known that antibody response is undulatory in nature (4) and wanes with and without treatment or may not exist at all (5). UK testing does not include tests for antibodies to persistent forms of borrelia (6). Research has concluded that "the detection and recognition of atypical forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form" (7). Much more is needed in the development of reliable tests within the UK and, until then, Lyme disease remains a clinical diagnosis. In addition, not all foreign tests are unvalidated. Any test which is part of ISO 15189 laboratory accreditation is independently validated before it can be accredited, and many foreign laboratories are ISO 15189 accredited, though not all their tests are included in that accreditation. Both the German accreditation body, DAkkS, and the UK accreditation body, UKAS, are signatories to the ILAC Mutual Recognition Agreement (8) and so DAkkS accredited German tests must be accepted in the UK. Conversely, not all UK tests are accredited. For example, there is no accredited IgM Lyme test available at Raigmore. This briefing also attempted to downplay the consequences of infection. Borrelia has been found in four different organs in human autopsy tissues from a well-documented patient who was antibody negative, CSF positive, and culture positive after standard treatment, who clinically improved with longer course antibiotics which was safe and efficacious, but who ultimately died when treatment was withdrawn (9). Suggesting that patients have 'residual symptoms' does not match the reality for many patients who are facing devastatingly life-changing and sometimes life-threatening illness if they have missed the early treatment window (Type II persistence) or if persistent forms were present from an early stage (Type I persistence) (10). In addition, Lyme is only one tick-borne disease in the UK. Other infections such as Babesia have been found to be present in abundance in UK animals (11, 12, 13) but there are no accredited tests at Porton Down or Raigmore. A French study has shown that polymicrobial infections are the rule rather than the exception (14). Co-infection with Babesia can reduce Borrelia antibody response because Babesia "causes splenic dysfunction that reduces B- and T-cell function and the production of antibodies required to control Borrelia burgdorferi infection" (15). Many of the sickest people are therefore being let down further by lack of available testing for other tick-borne diseases. Patients are travelling abroad and getting foreign tests because the NHS, and indeed the people who were a part of this briefing, are letting UK patients down. That the BMJ has published such one-sided opinion which is not backed up by science is unacceptable and propagates human rights violations to patients. What we need is: Admission that patients are being failed by lack of reliable testing for Borrelia and lack of comprehensive testing for co-infections. A study similar to the French one above to identify all pathogens in UK ticks. A concerted effort to develop comprehensive testing for all such human infections. An understanding that, although Borrelia is usually easy to treat in the first few weeks after infection, when treatment is delayed it is a serious and potentially fatal disease which is very difficult to treat. A drive to fully understand how to treat those who are chronically ill after a tick bite, while understanding that many patients are possibly suffering from polymicrobial infections. Stating that patients have 'chronic fatigue syndrome' is no answer for patients who are chronically ill after a tick bite. They may not all have Lyme disease but downplaying the extent of the issue while denying them proper testing, treatment, or compassionate support is unethical. The Lyme Resource Centre is currently compiling a freely-available database of peer-reviewed evidence-based scientific literature on tick-borne diseases to assist researchers and anyone else interested in accurate information on tick-borne diseases. It is available at : https://www.lymeresourcecentre.com/research Prof. John Lambert MD PhD Dr. Janey Cringean BSc(Hons) MSc PhD Mrs. Arlene Brailey BSc(Hons) MRPharmS FFRPS Lyme Resource Centre Registered Scottish Charity: SC049151 References: 1. https://www.bmj.com/company/newsroom/uk-tick-borne-lyme-disease-cases-may-be-3-times-higher-than-previous-estimates/ 2. https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(19)30436-0/fulltext 3. https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-6681-9 (including references 13, 14 and 15) 4. https://www.hindawi.com/journals/isrn/2012/719821/ 5. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0189071 6. https://www.nature.com/articles/s41598-018-34393-9 7. https://www.ncbi.nlm.nih.gov/pubmed/18817547 8. https://ilac.org/ilac-mra-and-signatories/ 9. https://www.mdpi.com/2079-6382/8/4/183 10. https://www.ncbi.nlm.nih.gov/pubmed/30946803 11. http://theses.gla.ac.uk/8750/ 12. https://www.ncbi.nlm.nih.gov/pubmed/28696186 13. https://www.ncbi.nlm.nih.gov/pubmed/200997 14. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4795628/ 15. https://www.mdpi.com/2076-0817/8/3/117/htm Previous Next

180 < Back to Research Top Published Date 13/01/2016 Approach to diagnosing Lyme disease misses a large proportion of cases Journal BMJ (Clinical Research Edition) Citation BMJ. 2016 Jan 13;352:i113 DOI 10.1136/bmj.i113 Authors Horowitz RI Abstract This is a 'Letter', and thus constitutes an opinion piece. Neither full abstract nor letter are in the public domain. Many physicians who care for patients with Lyme disease and who have followed the decades long debate on appropriate diagnosis and treatment agree that a new approach is needed. URL Previous https://www.bmj.com/content/352/bmj.i113.full No Review Needed? Next

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77 < Back to Research Top Published Date 01/02/2020 Mycotic Aneurysm of the Middle Cerebral Artery Leading to Subarachnoid Hemorrhage, as the Initial Presentation of Bartonella henselae Endocarditis Journal South Dakota Medicine Citation 73(2):68-70 DOI Authors Varga Z, Gowda SN, Stys A Abstract Bartonella species was first reported as a cause of endocarditis in 1993, currently it is thought to account for 3-4 percent of all diagnosed cases. Initial symptoms of Bartonella endocarditis are non-specific like weight loss, fever and fatigue. There are very few reported cases of Bartonella endocarditis causing mycotic aneurysm. We present a case of a 60-year-old male who presented with subarachnoid hemorrhage secondary to mycotic aneurysm. Due to high suspicion of endocarditis leading to mycotic aneurysm he underwent transesophageal echocardiography which showed mitral valve vegetations. His blood cultures were negative, he was eventually diagnosed with Bartonella henselae by elevated IgG titers greater than 1:800. Due to repeated mycotic aneurysms on antibiotics, he underwent surgical mitral valve replacement along with the full course of antibiotics and has been asymptomatic since. URL Previous https://pubmed.ncbi.nlm.nih.gov/32135054/ No Review Needed? Next

57 < Back to Research Top Published Date 06/06/2020 Bartonella species in medically important mosquitoes, Central Europe Journal Parasitology Research Citation 119(8):2713-2717 DOI 10.1007/s00436-020-06732-1 Authors Rudolf I, Mendel J, Strakova P, Sebesta O, Rettich F, Miterpakova M, BetaSova L, PeSko J, BarbuSinova E, McKee C, Osikowicz L, Sikutova S, Hubalek Z, Kosoy M, Cabanova V, Blazejova H Abstract Here, we provide the first mass molecular screening of medically important mosquitoes for Bartonella species using multiple genetic markers. We examined a total of 72,115 mosquito specimens, morphologically attributed to Aedes vexans (61,050 individuals), Culex pipiens (10,484 individuals) and species of the Anopheles maculipennis complex (581 individuals) for Bartonella spp. The initial screening yielded 63 Bartonella-positive A. vexans mosquitoes (mean prevalence 0.1%), 34 Bartonella-positive C. pipiens mosquitoes (mean prevalence 0.3%) and 158 Bartonella-positive A. maculipennis group mosquitoes (mean prevalence 27.2%). Several different Bartonella ITS sequences were recovered. This study highlights the need for molecular screening of mosquitoes, the most important vectors of arthropod-borne pathogens, for potential bacterial agents. Keywords: Aedes; Anopheles; Bartonella; Culex; Mosquito. URL Previous https://pubmed.ncbi.nlm.nih.gov/32506253/#affiliation-8 No Review Needed? Next

299 < Back to Research Top Published Date 01/01/2010 A clear and present danger: tick-borne diseases in Europe Journal Expert Review of Anti-infective Therapy Citation Expert Rev Anti Infect Ther. 2010 Jan;8(1):33-50 DOI 10.1586/eri.09.118 Authors Heyman P, Cochez C, Hofhuis A, van der Giessen J, Sprong H, Porter SR, Losson B, Saegerman C, Donoso-Mantke O, Niedrig M, Papa A Abstract Ticks can transmit a variety of viruses, bacteria or parasites that can cause serious infections or conditions in humans and animals. While tick-borne diseases are becoming an increasing and serious problem in Europe, tick-borne diseases are also responsible for major depressions in livestock production and mortality in sub-Saharan Africa, Latin America and Asia. This review will focus on the most important circulating tick-transmitted pathogens in Europe (Borrelia spp., Anaplasma phagocytophilum, Babesia spp., tick-borne encephalitis virus, Rickettsia spp. and Crimean-Congo hemorrhagic fever virus). URL Previous https://www.ncbi.nlm.nih.gov/pubmed/20014900 No Review Needed? Next

249 < Back to Research Top Published Date 08/08/2012 Beyond cat scratch disease: a case report of bartonella infection mimicking vasculitic disorder Journal Case Reports in Infectious Diseases Citation Case Rep Infect Dis. 2012;2012:35462 DOI 10.1155/2012/354625 Authors Spinella A, Lumetti F, Sandri G, Cestelli V, Mascia MT Abstract Cat scratch disease (CSD) is a bacterial disease caused by Bartonella henselae and it is mainly characterized by self-limiting lymphadenopathy in the draining site of a cat scratch or bite. We report a patient with history of fever, swelling lymph nodes, vasculitic-like skin lesions, and positivity of Bartonella serology initially considered as expression of a disimmune disease. URL Previous https://www.hindawi.com/journals/criid/2012/354625 No Review Needed? Next

< Back CHRONIC LYME/CO-INFECTIONS & LONG COVID - WHAT DO THEY HAVE IN COMMON? LRC 23 Aug 2022 CHRONIC LYME-CO-INFECTIONS & LONG COVID - WHAT DO THEY HAVE IN COMMON .pdf Download PDF • 5.81MB Previous Next

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Immediate resources for diagnosis and treatment. Lyme Disease - What Health Professionals Need To Know Download the LRC Booklet Here Resources, Evidence and Research Sources Download the PDF Here NICE Overview | Lyme disease | Guidance | NICE Lyme disease | Health topics A to Z | CKS | NICE Overview | Lyme disease | Quality standards | NICE RCGP / BMJ Course: Lyme Disease Toolkit | RCGP Learning Summary of Lyme Disease | RCGP Learning e-learning module Lyme disease: Antibiotic choices - visual summary UKHSA Lyme disease: sample testing advice - GOV.UK UKHSA Lyme disease: resources & guidance UKHSA Tips and tricks to stay safe from ticks Evidence & Research • Resources for Health Professionals For Health Professionals | Lyme Resource Centre • Key Lyme Disease Research Evidence - Summary • Johns Hopkins Lyme Disease Research Center https://www.hopkinslyme.org/ • Columbia University - Lyme & Tick-Borne Diseases Research Center Columbia-Lyme.org • Bay Area Lyme Foundation • European Centre for Disease Prevention and Control (ECDC) UK Voluntary Organisations • Lyme Resource Centre • Lyme Disease UK • Lyme Disease Action Additional References • Seroprevalence of Borrelia burgdorferi sensu lato antibodies in English adult blood donors: A nationwide cross-sectional study, 2021–2022 - ScienceDirect • Seroprevalence of Lyme borreliosis in Scottish blood donors - Munro - 2015 - Transfusion Medicine - Wiley Online Library • Incidence and management of Lyme disease: a Scottish general practice retrospective study | BJGP Open 2024;8 Mavin S, Guntupalli S, Robb M. • Reappraisal of PTLDS Fallon BA, Petkova E, Keilp JG, Britton CB. A reappraisal of the US Clinical trials of post-treatment Lyme disease syndrome. Open Neurol J. 2012;6:79-87 • Borrelia persistence following antibiotics Embers ME, Barthold SW, Borda JT et al. • Fallon BA et al, Recent Progress in Lyme Disease and Remaining Challenges . Front Med (Lausanne). 2021 Aug • Commercial test kits for detection of Lyme borreliosis: a meta-analysis of test accuracy - PubMed • High frequency of paediatric facial nerve palsy due to Lyme disease in a geographically endemic region • Murray E, Cruikshank A, Husain Z et al, Lyme Disease Experience Survey 2024 - All Responses Summary Posters, Cambridge Open Engage, Sept 2024 DOI 10.33774/coe-2024-xtwgm Lyme Disease Experience Survey 2024 - All Responses Summary Posters | Life Sciences | Cambridge Open Engage

205 < Back to Research Top Published Date 16/09/2014 Evaluation of Borrelia Real Time PCR DNA Targeting OspA, FlaB and 5S-23S IGS and Borrelia 16S rRNA RT-qPCR Journal Journal of Microbiological Methods Citation J Microbiol Methods. 2014 Dec;107:41-6 DOI 10.1016/j.mimet.2014.09.001 Authors de Leeuw BHCGM, Maraha B, Hollemans L, Sprong H, Brandenburg AH, Westenend PJ, Kusters JG Abstract Borrelia burgdorferi non-sensu lato (s.l.) strains occurred in the Netherlands. A multiplex OspA, FlaB, IGS real time PCR was compared to 16S rRNA/rDNA RT-qPCR with lower average Cycle threshold (Ct) and LOD on strain dilutions. Multiplexing increased sensitivity on CSF samples (n=74), distinguishing B. burgdorferi s.l. from non-s.l. strains. URL Previous https://pubmed.ncbi.nlm.nih.gov/25218111/ No Review Needed? Next

223 < Back to Research Top Published Date 08/01/2014 Persisters, persistent infections and the Yin-Yang model Journal Emerging Microbes & Infections Citation Emerg Microbes Infect. 2014 Jan;3(1):e3 DOI 10.1038/emi.2014.3 Authors Zhang Y Abstract Persisters are a small fraction of quiescent bacterial cells that survive lethal antibiotics or stresses but can regrow under appropriate conditions. Persisters underlie persistent and latent infections and post-treatment relapse, posing significant challenges for the treatment of many bacterial infections. The current definition of persisters has drawbacks, and a Yin-Yang model is proposed to describe the heterogeneous nature of persistersthat have to be defined in highly specific conditions. Despite their discovery more than 70 years ago, the mechanisms of persisters are poorly understood. Recent studies have identified a number of genes and pathways that shed light on the mechanisms of persister formation or survival. These include toxin-antitoxin modules, stringent response, DNA repair or protection, phosphate metabolism, alternative energy production, efflux, anti-oxidative defense and macromolecule degradation. More sensitive single-cell techniques are required for a better understanding of persister mechanisms. Studies of bacterial persisters have parallels in other microbes (fungi, parasites, viruses) and cancer stem cells in terms of mechanisms and treatment approaches. New drugs and vaccines targeting persisters are critical for improved treatment of persistent infections and perhaps cancers. Novel treatment strategies for persisters and persistent infections are discussed. URL Previous https://www.tandfonline.com/doi/full/10.1038/emi.2014.3 No Review Needed? Next