Lyme borreliosis and medical wandering: what do patients think about multidisciplinary management? A qualitative study in the context of scientific and social controversy.

INTRODUCTION: To answer to patients' medical wandering, often due to "unexplained symptoms" of "unexplained diseases" and to misinformation, multidisciplinary care centers for suspected Lyme borreliosis (LB), such as the 5 Tick-Borne Diseases (TBDs) Reference Centers (TBD-RC), were created a few years ago in France, the Netherlands and Denmark. Our study consisted of a comprehensive analysis of the satisfaction of the patients managed at a TBD-RC for suspected LB in the context of scientific and social controversy. METHODS: We included all adults who were admitted to one of the TBD-RC from 2017 to 2020. A telephone satisfaction survey was conducted 12 months after their first consultation. It consisted of 5 domains, including 2 free-text items: "What points did you enjoy?" and "What would you like us to change or to improve?". In the current study, the 2 free-items were analyzed with a qualitative method called reflexive thematic analysis within a semantic and latent approach. RESULTS: The answer rate was 61.3% (349/569) and 97 distinctive codes from the 2-free-text items were identified and classified into five themes: (1) multidisciplinarity makes it possible to set up quality time dedicated to patients; (2) multidisciplinarity enables seamless carepaths despite the public hospital crisis compounded by the COVID-19 pandemic; (3) multidisciplinarity is defined as trust in the team's competences; (4) an ambivalent opinion and uncertainty are barriers to acceptance of the diagnosis, reflecting the strong influence of the controversy around LB; and (5) a lack of adapted communication about TBDs, their management, and ongoing research is present. CONCLUSION: The multidisciplinary management for suspected LB seemed an answer to medical wandering for the majority of patients and helped avoid misinformation, enabling better patient-centered shared information and satisfaction, despite the context of controversy.

Tick-borne diseases in the North Sea region-A comprehensive overview and recommendations for diagnostics and treatment.

As part of the NorthTick project, co-funded by the European Union through the European Regional Development Fund and the North Sea Region Programme, specialists in the field of tick-borne diseases from seven North Sea countries co-operated with patient organisations and governmental health care institutions to provide this comprehensive overview of diagnostics and treatment recommendations in the region for Lyme borreliosis, Borrelia miyamotoi infection, tick-borne encephalitis, human granulocytic anaplasmosis, rickettsiosis, neoehrlichiosis and babesiosis. The main conclusion is that the recommendations in these northern countries are essentially the same, with very few differences. This overview presents the current diagnostics and provides useful clinical guidance.

Acceptance of diagnosis and management satisfaction of patients with "suspected Lyme borreliosis" after 12 months in a multidisciplinary reference center: a prospective cohort study.

INTRODUCTION: Because patients with a "suspicion of Lyme borreliosis (LB)" may experience medical wandering and difficult care paths, often due to misinformation, multidisciplinary care centers were started all over Europe a few years ago. The aim of our study was to prospectively identify the factors associated with the acceptance of diagnosis and management satisfaction of patients, and to assess the concordance of the medical health assessment between physicians and patients 12 months after their management at our multidisciplinary center. METHODS: We included all adults who were admitted to the Tick-Borne Diseases Reference Center of Paris and the Northern Region (TBD-RC) (2017-2020). A telephone satisfaction survey was conducted 12 months after their first consultation. It consisted of 5 domains and 13 items rated between 0 (lowest) and 10 (highest grade): (1)Reception; (2)Care and quality of management; (3)Information/explanations given to the patients; (4)Current medical condition and acceptance of the final diagnosis; (5)Overall appreciation. Factors associated with diagnosis acceptance and management satisfaction at 12 months were identified using logistic regression models. The concordance of the health status as assessed by doctors and patients was calculated using a Cohen's kappa test. RESULTS: Of the 569 patients who consulted, 349 (61.3%) answered the questionnaire. Overall appreciation had a median rating of 9 [8;10] and 280/349 (80.2%) accepted their diagnoses. Patients who were "very satisfied" with their care paths at TBD-RC (OR = 4.64;CI95%[1.52-14.16]) had higher odds of diagnosis acceptance. Well-delivered information was strongly associated with better satisfaction with the management (OR = 23.39;CI95%[3.52-155.54]). The concordance between patients and physicians to assess their health status 12 months after their management at TBD-RC was almost perfect in the groups of those with confirmed and possible LB (κ = 0.99), and moderate in the group with other diagnoses (κ = 0.43). CONCLUSION: Patients seemed to approve of this multidisciplinary care organization for suspected LB. It helped them to accept their final diagnoses and enabled a high level of satisfaction with the information given by the doctors, confirming the importance of shared medical decisions, which may help to reduce health misinformation. This type of structure may be useful for any disease with a complex and controversial diagnosis.

[Lyme borreliosis]. / Borréliose de Lyme.

LYME BORRELIOSIS. Lyme borreliosis (LB) is the most common vector-borne disease in the Northern Hemisphere, caused by the bacterium Borrelia burgdorferi sensu lato, transmitted to humans by a bite of ticks Ixodes. Prevention is based on simple measures to evict ticks, and on their rapid extractionin the event of a bite. The diagnosis of LB is based on 3 arguments: an exposure to tick bites; clinically compatible symptoms (cutaneous, neurological or rheumatological manifestations, +/- functional symptoms such as fatigue or polyarthromyalgia), evolving in 3 stages (early localized or erythema migrans, early or late disseminated LB); a positive two-tier serological test (ELISA +/- Western-Blot). Serology can be negative for the first 6 weeks, without excluding the diagnosis. Since serology can remain positive for life, evolution is only evaluated clinically. LB treatment is mainly based on doxycycline for 14 to 28 days, depending on the clinical stage and manifestations, without demonstrated interest in prolonging it, even if symptoms persist. Nonetheless their management is crucial as often responsible for medical wandering. Attentive listening to the patient is essential. The prognosis of LB in the medium-term is favorable, especially if they beneficiate of an early management.

BORRÉLIOSE DE LYME. La borréliose de Lyme (BL) est la maladie vectorielle la plus fréquente de l'hémisphère Nord. Elle est due à la bactérie Borrelia burgdorferi sensu lato, transmise à l'homme lors d'une piqûre de tique infectée du genre Ixodes. La prévention repose sur des mesures simples d'éviction des tiques, et sur leur extraction rapide en cas de piqûre. Le diagnostic de la BL est basé sur un trépied : une exposition aux piqûres de tiques ; une clinique compatible (manifestations cutanées, neurologiques ou articulaires, éventuellement accompagnées de symptômes fonctionnels comme une fatigue, des polyarthromyalgies…), évoluant en trois phases (localisée précoce ou érythème migrant, disséminée précoce et tardive) ; une sérologie positive en deux temps (ELISA +/- western-blot). La sérologie peut être négative les 6 premières semaines, sans exclure le diagnostic. La sérologie pouvant rester positive à vie, l'évolution est uniquement évaluée cliniquement. Le traitement de la BL repose principalement sur la doxycycline, pendant 14 à 28 jours selon le stade clinique et le type d'atteinte. Il n'y a pas d'intérêt démontré à prolonger l'antibiothérapie, même en cas de persistance de symptômes. Néanmoins la prise en charge de ceux-ci (réadaptation physique, thérapies brèves, etc.) est fondamentale car ils sont souvent à l'origine d'une errance médicale. Une écoute attentive du patient est essentielle. Le pronostic des BL à moyen terme est favorable, ce d'autant que leur prise en charge est précoce.

Skin Changes in Suspected Lyme Disease.

Dear Editor, Ticks carry many diseases, bacteria, and viruses and represent a very important healthcare issue both in Croatia and globally. Although most ticks are not infected with pathogens dangerous to humans, some ticks can transmit infectious diseases with significant morbidity and mortality. This is caused by the increasing incidence of many tick-borne diseases over a growing geographical area. Many factors influence which species of ticks are present in a given geographical area, as well as the density of their population and the risk of human exposure to infected ticks. The average morbidity from Lyme borreliosis in the Republic of Croatia is 6.51 infected per 100,000 inhabitants. There can be no Lyme borreliosis without ticks infected by Borrelia burgdorferi (1,2). In Europe, Lyme borreliosis (LB) is caused by the Borrelia burgdorferi sensu lato complex genotype. There are three skin manifestations of LB: erythema migrans (EM), borrelial lymphocytoma (BL), and acrodermatitis chronica atrophicans (ACA) (3,4). Herein we describe a female patient with a diagnosis of Lyme disease based on the non-specific clinical picture and laboratory diagnostics, in whom successful treatment led to complete regression of all skin manifestations. The patient was a 58-year-old woman with no previous history of severe illness. Notably, the patient history showed that, eight months prior to presenting for the dermatological exam, the patient had observed the appearance of edema and demarcated macular exanthema around both ankles and subsequently on the dorsum of the right hand, which spread to the left hand and with gradual spread to both lower legs and the lower extremities, with more pronounced changes on the left leg. The initial dermatological examination found pronounced skin changes on both legs, especially the left leg, with erythematous changes in the form of figurate erythema forming confluences up to the size of a smaller palm; the skin of the left leg was partially mottled with normal turgor and elasticity (Figure 1a and Figure 1b). Inguinal lymph nodes were enlarged and painless on palpation. Changes were minimal and discrete on the right leg and were absent on the torso, upper extremities, and skin. Subjectively, there was no itching, burning, or tingling sensation in the affected areas of the skin. The patient subjectively reported feeling well. Family history showed that the patient's father had died from prostate cancer and that the mother had died from melanoma. Laboratory findings were as follows: hematological, biochemical, and immunological parameters were normal. Venous and arterial ultrasound of both legs was normal, with the presence of reactively enlarged left inguinal lymph nodes. Lyme disease was suspected based on the clinical picture, with a differential diagnosis of possible livedo reticularis. A biopsy of the skin changes was also performed, with the results showing that the histological picture in the examined material could be compatible with the provisional clinical diagnosis of livedo reticularis. IgM and IgG specific for Borrelia burgdorferi was also performed: IgG was borderline, whereas IgM was positive at 218 U/mL. Over the next 3 weeks, Amoxil 500 mg thrice daily was introduced to the treatment. After completion of the treatment, there was a gradual regression of all skin changes without the appearance of new lesions (Figure 2a and Figure 2b) (Figure 3a and Figure 3b). Patient follow-up over the next year did not find any recurrence of similar skin changes. Herein we have described the case of a patient with atypical skin changes in which the presence of antibodies for Borrelia burgdorferi was demonstrated, in which regression of all skin manifestations was achieved after diagnosis and adequate antibiotic treatment. Lyme disease has a wide spectrum of clinical manifestations that can generally be observed in three stages: the early localized stage, the early disseminated stage, and the late stage of the disease. However, it is also possible for the different stages to overlap and even for the late stage to manifest without any signs and symptoms of the earlier stages. Early localized stage. Characterized by skin changes - erythema migrans (EM) - usually manifests within a month of the tick bite (usually 7-14 days after the bite) (Figure 4 and Figure 5). EM manifests in approximately 80% of patients, but only 25% of patients can recall the tick bite. The skin changes are usually localized in the axilla, the groin, the cubital area, or around the waist. The changes are generally not painful, but can itch or be warm to the touch. They gradually spread over days or weeks and can grow to a radius of up to 20 cm. Initially, the coloration can be uniform for several days, after which the redness disappears around a central zone (4-6). Multiple skin changes are a sign of spirochetemia and not the result of multiple tick bites. Due to timely antimicrobial treatment, multiple skin changes are much rarer today. In the initial days or weeks after infection, patients with early, localized, or disseminated Lyme disease often present with non-specific signs and symptoms resembling a viral infection: fatigue, headache, loss of appetite, joint pain, and regional lymphadenopathy. Fever can be present in approximately 20% of patients. Laboratory findings in this phase are non-specific. Erythrocyte sedimentation can be slightly increased, leukocyte counts are mostly normal, and anemia and thrombocytopenia are present only rarely (7,8). Early disseminated stage. This stage is marked by numerous EM lesions (that generally appear days or weeks after the infection) and/or neurological and/or cardiac manifestations (occurring weeks or months after infection). Some of these patients have no data on the presence of early localized Lyme disease. The most common triad of neurological manifestations are meningitis, neuropathy (usually of the facial nerve) and motor or sensory radiculopathy (Bannwarth syndrome). All these manifestations can appear individually. Cranial nerve neuropathies can often be bilateral. Late-stage Lyme disease. Characterized by intermittent or permanent arthritis in one joint or several large joints, most commonly the knees, and/or more rarely by neurological symptoms such as discrete encephalopathy or polyneuropathy. Late-stage Lyme disease can develop several years after primary infection, and arthritis can be the first manifestation of the disease, with the early localized and early disseminated stages not manifesting at all. In Europe, patients with late-stage Lyme disease can present with chronic skin changes (acrodermatitis chronica atrophicans), which is not observed in the USA. It is caused by B. afzelii and is typically localized to the extensor surfaces of the hands and feet. It is most common in women >40 years of age but can also present in younger populations. However, due to early antimicrobial treatment of the earlier stages of the disease, late-stage manifestations are rare (9). The discovery of the etiology of this disease showed that some well-known clinical entities were also a manifestation of Borrelia infection. The etiology of other dermatologic diseases was thus determined, such as lymphocytoma (or lymphadenosis cutis benigna), which was recognized as an entity as early as 1884, as well as acrodermatitis chronica atrophicans, described in 1888, erythema chronicum migrans (Afzelius-Lipschütz), and the neurological disease called Bannwarth syndrome, the symptoms of which were described as early as 1922 (10,11). LB and all its dermatological manifestations occur in almost all European countries, predominantly in the central part of the continent. The annual incidence is between 9.4 cases per 100,000 inhabitants in France to 120 cases per 100,000 inhabitants in northeastern Poland, 130 cases per 100,000 inhabitants in Austria, and 155 cases per 100,000 inhabitants in Slovenia (12). The total prevalence of ACA in all European patients with LB is 1-10%, depending on the region. For example, BL and ACA comprise 0.3% of LB cases in Bulgaria. In Norway, ACA comprises 5% of all clinical LB cases, and in northern Italy that number is 2.5%. Establishing a diagnosis of ACA is much more difficult than diagnosing EM or benign lymphocytoma (BL) because the clinical manifestations of ACA can vary. Acrodermatitis chronica atrophicans is probably the most common late and chronic manifestation of LB that can be observed in European patients. The skin changes in our patient were fairly non-specific, based on descriptions from the literature, but positivity for IgM antibodies was important for establishing the diagnosis, along with the very good response to antibiotics regarding regression of skin changes as well as the histological analysis that, according to the pathohistological diagnosis, indicated livedo reticularis, which is in turn also described in the literature as a possible form of ACA depending on the stage of the disease. Skin changes on the lower extremities are often incorrectly interpreted as vascular insufficiency, e.g. chronic venous insufficiency, superficial thrombophlebitis, hypostatic eczema, obliterative arterial disease, acrocyanosis, livedo reticularis, or lymphoedema, but they can also be the result of ACA, as in our case (13-15). In cases such as the one we have described, clinical manifestations of Lyme disease can very often vary and differ greatly from the typical clinical picture. This is demonstrated by our case, which also shows that LB and its idiosyncratic manifestations can lead physicians astray in a condition where failing to establish a timely diagnosis can be fatal for the patient. This case report also serves as a reminder that Lyme disease should be considered whenever atypical skin changes are encountered. Given that ACA is a disease in the late stage of Lyme disease and that the changes in our patient were noticed atthe very beginning, the disease did not develop to the later stage.

Lyme borreliosis in Belgium: a cost-of-illness analysis.

BACKGROUND: Lyme borreliosis (LB) is the most common tick-borne disease in Europe and North America, yet its economic burden remains largely unknown. This study aimed to estimate the economic cost associated with the different clinical manifestations of LB in Belgium. METHODS: An incidence approach and societal perspective were used to estimate the total cost-of-illness for LB in Belgium. Costs were calculated for patients with erythema migrans (EM) or disseminated/late LB, including patients who developed post-treatment Lyme disease syndrome (PTLDS). Direct medical, direct non-medical (transportation & paid help) and indirect non-medical costs (productivity losses) were included in the analysis. Ambulatory cost data were collected through a prospective cohort study from June 2016 to March 2020, in which patients with LB were followed up 6 to 12 months after diagnosis. Hospitalization costs were retrieved from the Minimal Clinical Data registry, a mandatory registry for all Belgian hospitals, linked to the Minimal Financial Data registry. Costs were expressed in 2019 euros. RESULTS: The total annual cost associated with clinical manifestations of LB in Belgium was estimated at €5.59 million (95% UI 3.82-7.98). Of these, €3.44 million (95% UI 2.05-5.48) or 62% was related to disseminated/late LB diagnoses and €2.15 million (95% UI 1.30-3.26) to EM. In general, direct medical costs and productivity losses accounted for 49.8% and 46.4% of the total costs, respectively, while direct non-medical costs accounted for only 3.8%. The estimated mean costs were €193 per EM patient and €5,148 per disseminated/late LB patient. While patients with PTLDS seemed to have somewhat higher costs compared to patients without PTLDS, the number of patients was too small to have representative estimates. CONCLUSIONS: We estimate the total annual direct medical costs, direct non-medical and indirect non-medical costs associated with LB to exceed €5.5 million per year, almost evenly distributed between EM (40%) and disseminated/late LB (60%). EM costs 26 times less per patient but occurs also 16 times more frequently than disseminated/late LB. The cost burden remains limited by comparison to other infectious diseases due to the relative lower incidence.

Sciatic-Vagal Nerve Stimulation by Electroacupuncture Alleviates Inflammatory Arthritis in Lyme Disease-Susceptible C3H Mice.

Lyme disease is caused by Borrelia burgdorferi, and the pathogenesis of the disease is complex with both bacterial and host factors contributing to inflammatory responses. Lyme disease affects different organs including joints and results in arthritis. Immune responses stimulated by B. burgdorferi through toll-like receptors cause infiltration of leukocytes, which produce inflammatory cytokines and facilitate spirochete clearance. However, arthritic manifestations and chronic fatigue syndrome-like symptoms persist long after completion of antibiotic treatment regimens in a significant number of patients. To counter the effects of inflammation, treatment by non-steroidal anti-inflammatory drugs, hydroxychloroquine, or synovectomy to eradicate inflammatory arthritis in the involved joint could be employed; however, they often have long-term consequences. Acupuncture has been used for a long time in Asian medicine to diminish pain during various ailments, but the effects and its mechanism are just beginning to be explored. Control of inflammation by neuronal stimulation has been exploited as a systemic therapeutic intervention to arrest inflammatory processes. Our objective was to determine whether activation of the sciatic-vagal network by electroacupuncture on ST36 acupoint, which is used to control systemic inflammation in experimental models of infectious disorders such as endotoxemia, can also alleviate Lyme arthritis symptoms in mice. This aim was further strengthened by the reports that sciatic-vagal neuronal network stimulation can lead to dopamine production in the adrenal medulla and moderate the production of inflammatory factors. We first assessed whether electroacupuncture affects spirochete colonization to attenuate Lyme arthritis. Interestingly, bioluminescent B. burgdorferi burden detected by live imaging and qPCR were similar in electroacupuncture- and mock-treated mice, while electroacupuncture induced a lasting anti-inflammatory effect on mice. Despite the discontinuation of treatment at 2 weeks, the simultaneous decrease in neutrophils in the joints and inflammatory cytokine levels throughout the body at 4 weeks suggests a systemic and persistent effect of electroacupuncture that attenuates Lyme arthritis. Our results suggest that electroacupuncture-mediated anti-inflammatory responses could offer promising healthcare benefits in patients suffering from long-term Lyme disease manifestations.

An intervention in general practice to improve the management of Lyme borreliosis in Denmark.

BACKGROUND: Our objectives were to improve the following outcomes in patients with Lyme borreliosis (LB) through an educational intervention in general practice: (i) increase the number of hospital referrals on suspicion of LB, (ii) increase the number of cerebrospinal fluid (CSF) tests examined for Borrelia burgdorferi antibody index, (iii) decrease the number of serum-B. burgdorferi antibody tests ordered, (iv) shorten delay from symptom onset to hospital in Lyme neuroborreliosis (LNB) patients, (v) increase LB knowledge among general practitioners. METHODS: A prospective non-blinded non-randomized intervention trial on the island of Funen, Denmark. The intervention included oral and written education about LB and was carried out in areas with an LNB incidence ≥4.7/100.000 between 22 January 2019 and 7 May 2019. Results were compared between the intervention group (49 general practices) and the remaining general practices in Funen (71 practices) 2 years before and after the intervention. RESULTS: In the study period, 196 patients were referred on suspicion of LB, a 28.9% increase in the intervention group post-intervention, 59.5% increase in the control group (P = 0.47). The number of CSF-Borrelia-antibody index tests increased 20.8% in the intervention group, 18.0% in the control group (P = 0.68), while ordered serum-B. burgdorferi antibody tests declined 43.1% in the intervention group, 34.5% in the control group (P = 0.30). 25.1% had the presence of serum-B. burgdorferi antibodies. We found no difference in LNB pre-hospital delay before and after intervention or between groups (P = 0.21). The intervention group performed significantly better on a follow-up questionnaire (P = 0.02). CONCLUSION: We found an overall improvement in LB awareness and referrals among general practitioners but could not show any effect of the intervention on clinical outcomes of LNB.

A Review of Post-treatment Lyme Disease Syndrome and Chronic Lyme Disease for the Practicing Immunologist.

Lyme disease is an infection caused by Borrelia burgdorferi sensu lato, which is transmitted to humans through the bite of an infected Ixodes tick. The majority of patients recover without complications with antibiotic therapy. However, for a minority of patients, accompanying non-specific symptoms can persist for months following completion of therapy. The constellation of symptoms such as fatigue, cognitive dysfunction, and musculoskeletal pain that persist beyond 6 months and are associated with disability have been termed post-treatment Lyme disease syndrome (PTLDS), a subset of a broader term "chronic Lyme disease." Chronic Lyme disease is a broad, vaguely defined term that is used to describe patients with non-specific symptoms that are attributed to a presumed persistent Borrelia burgdorferi infection in patients who may or may not have evidence of either previous or current Lyme disease. The diagnoses of chronic Lyme disease and of PTLDS have become increasingly relevant to the practice of immunologists due to referrals for consultation or for intravenous immunoglobulin (IVIG) treatment. This review aims to explore the relationship between chronic Lyme disease, post-treatment Lyme disease syndrome, and the immune system. Here, we review the current literature on (1) issues in conventional and alternative diagnostic testing for Lyme disease, (2) the hypothesis that B. burgdorferi infection can persist despite appropriate use of recommended antibiotics, (3) current theories regarding B. burgdorferi's role in causing both immune dysregulation and protracted symptoms, and (4) the use of IVIG for the treatment of Lyme disease.

The Impact of Operative Intervention in Pediatric Lyme Arthritis.

BACKGROUND: Lyme arthritis often presents as acute monoarticular arthritis challenging to distinguish from septic arthritis. Typical management for Lyme arthritis entails antibiotic therapy, while septic arthritis usually warrants operative debridement. During the period when Western Pennsylvania transitioned to a Lyme-endemic region, many children underwent operative intervention who were ultimately diagnosed with Lyme arthritis due to diagnostic ambiguity. We examined the impact of the operative intervention on pediatric Lyme arthritis outcomes. METHODS: We conducted a retrospective cohort study of patients admitted to a tertiary care children's hospital who were diagnosed with Lyme arthritis from 2008 to 2018 using chart review. Inclusion criteria were positive Lyme serology by Centers for Disease Control and Prevention (CDC) definition, clinical arthritis, and negative bacterial cultures. We recorded clinical presentation, laboratory data, details of hospitalization, costs, and outcomes after therapy to compare the impact of antibiotics alone (nonoperative group) versus antibiotics plus operative debridement (operative group). RESULTS: A total of 149 patients met the inclusion criteria. Overall, 47 (32%) patients underwent orthopaedic intervention. Operative management was associated with increased length (3.17 vs. 1.40 d) and cost ($27,850 vs. $10,716) of admission. The clinical resolution was documented in 57/58 patients (98%) in the nonoperative group and 41/42 patients (98%) in the operative group. The median duration to resolution was 21 days for both groups. CONCLUSIONS: Operative management of pediatric patients with Lyme arthritis is associated with increased resource utilization and costs while being similarly efficacious to nonoperative management. As the US Lyme epidemic expands, improved diagnosis and management of acute undifferentiated arthritis may prevent unneeded operative intervention. LEVEL OF EVIDENCE: Level III-retrospective cohort study.

Primary care clinical provider knowledge and experiences in the diagnosis and treatment of tick-borne illness: a qualitative assessment from a Lyme disease endemic community.

BACKGROUND: Primary care and frontline healthcare providers are often the first point of contact for patients experiencing tick-borne disease (TBD) but face challenges when recognizing and diagnosing these diseases. The specific aim of this study was to gain a qualitative understanding of frontline and primary care providers' knowledge and practices for identifying TBDs in patients. METHODS: From fall 2018 to spring 2019, three focus groups were conducted with primary care providers practicing in a small-town community endemic to Lyme disease (LD) and with emerging incidence of additional TBDs. A follow up online survey was distributed to urgent and emergency care providers in the small-town community and an academic medical center within the referral network of the local clinical community in spring and summer 2019. Qualitative analysis of focus group data was performed following a grounded theory approach and survey responses were analyzed through the calculation of descriptive statistics. RESULTS: Fourteen clinicians from three primary care practices participated in focus groups, and 24 urgent and emergency care clinicians completed the survey questionnaire. Four overarching themes emerged from focus group data which were corroborated by survey data. Themes highlighted a moderate level of awareness on diagnosis and treatment of LD among participants and limited knowledge of diagnosis and treatment for two other regionally relevant TBDs, anaplasmosis and babesiosis. Providers described challenges and frustrations in counseling patients with strong preconceptions of LD diagnosis and treatment in the context of chronic infection. Providers desired additional point-of-care resources to facilitate patient education and correct misinformation on the diagnosis and treatment of TBDs. CONCLUSIONS: Through this small study, it appears that clinicians in the small-town and academic medical center settings are experiencing uncertainties related to TBD recognition, diagnosis, and patient communication. These findings can inform the development of point-of-care resources to aid in patient-provider communication regarding TBDs and inform the development of continuing medical education programs for frontline and primary care providers.

Posttreatment Lyme Disease Syndrome-What It Might Be and What It Is Not.

Lyme disease is a multisystem disease caused by Borrelia burgdorferi infection and accounts for well-defined manifestations, appearing either at an early or late stage. Appropriate antibiotic therapy generally leads to a favorable outcome. Still, unspecific persisting symptoms such as fatigue, myalgia, arthralgia or cognitive dysfunction are reported by several patients months to years after adequate treatment. Their underlying pathophysiologic mechanism is unclear. However, there is no evidence for microbiological persistence in these cases and attempts to resolve the symptoms by repeated or prolonged antibiotic treatment have not been convincingly successful, but they may rather be harmful. To narrow down the controversially handled entity of posttreatment Lyme disease syndrome (PTLDS) and to avoid overdiagnosis and overtreatment, case definitions have been proposed, acknowledging PTLDS as a complex of nonspecific, subjective symptoms, which are neither caused by ongoing infection nor by any other identifiable disease. PTLDS is mainly a diagnosis of exclusion and requires careful evaluation of differential diagnosis followed by counseling about optimal management in light of missing specific therapeutic options.

The value-ladenness of transparency in science: Lessons from Lyme disease.

Both philosophers and scientists have recently promoted transparency as an important element of responsible scientific practice. Philosophers have placed particular emphasis on the ways that transparency can assist with efforts to manage value judgments in science responsibly. This paper examines a potential challenge to this approach, namely, that efforts to promote transparency can themselves be value-laden. This is particularly problematic when transparency incorporates second-order value judgments that are underwritten by the same values at stake in the desire for transparency about the first-order value judgments involved in scientific research. The paper uses a case study involving research on Lyme disease to illustrate this worry, but it responds by elucidating a range of scenarios in which transparency can still play an effective role in managing value judgments responsibly.

Physical Therapist Recognition and Referral of Individuals With Suspected Lyme Disease.

The most commonly reported vector-borne and tick-borne disease in the United States is Lyme disease. Individuals with Lyme disease may present with a wide array of symptoms with resultant musculoskeletal, neurological, and cardiac manifestations that may cause them to seek physical therapist services. The symptoms may develop insidiously and with a variable presentation among individuals. Many persons with Lyme disease do not recall a tick bite or present with an erythema migrans rash, which is considered pathognomonic for the disease. Even if they do, they may fail to associate either with their symptoms, making the diagnosis elusive. It is important to diagnose individuals early in the disease process when antibiotic treatment is most likely to be successful. Physical therapists are in a unique position to recognize the possibility that individuals may have Lyme disease and refer them to another practitioner when appropriate. The purpose of this article is to (1) present an overview of the etiology, incidence, and clinical manifestations of Lyme disease, (2) review evaluation findings that should raise the index of suspicion for Lyme disease, (3) discuss the use of an empirically validated tool for differentiating those with Lyme disease from healthy individuals, (4) discuss the current state of diagnostic testing, and (5) review options for diagnosis and treatment available to individuals for whom referral is recommended.

What We Know and Don't Know About Lyme Disease.

We know the cause of Lyme disease. We know that the bacteria can be found in the initial rash, and occasionally in the blood in the subsequent 2-3 months, but after then, its subsequent location is unknown. Whereas diagnosis and treatment of early Lyme disease is generally straightforward, the etiology of relapsing or persisting symptoms is yet to be defined, and presents clinical challenges. There are no current tests to determine if the infection is still present or absent, thus complicating diagnosis and treatment. Presented here are approaches to the diagnosis and treatment of persisting Lyme disease, based on available published information, and the experience of the author.

What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease.

Lyme disease remains a contested illness in Canada, thereby making the diagnostic and treatment journeys difficult for some people. One outcome of this is that increasing numbers of people are turning to medical crowdfunding to support access to alternative therapies, non-local health care providers and assist with managing the costs of everyday life. In this analysis, we qualitatively explore the narratives shared in Canadians' crowdfunding campaigns to support Lyme disease treatment or diagnosis to identify whether or not any common elements shared in these narratives exist, and if so, what they are. We identified 238 campaigns for inclusion from three prominent crowdfunding platforms. Thematic analysis of the campaign narratives shows four consistent themes shared in these campaigns: what is lost (e.g. bodily ability), what is missing (e.g. local care options), what is sought (e.g. funds to cover treatment abroad) and what is hoped for (e.g. return to wellbeing). These themes demonstrate the highly personal and emotional nature of medical crowdfunding, particularly in the context of a contested illness that may lead some to question the legitimacy of one's financial need. This analysis contributes valuable new insights to the nascent scholarship on medical crowdfunding, and particularly to our understanding of how people communicate about their health and bodily needs on this public platform. It also identifies important directions for future research, including the potential for crowdfunding narratives to be used for advocacy.

Chagas' cardiomyopathy and Lyme carditis: Lessons learned from two infectious diseases affecting the heart.

Chagas' disease and Lyme disease are two endemic, vector-borne zoonotic infectious diseases that impact multiple organ systems, including the heart. Chagas' cardiomyopathy is a progressive process that can evolve into a dilated cardiomyopathy and heart failure several decades after the acute infection; in contrast, although early-disseminated Lyme carditis has been relatively well characterized, the sequelae of Lyme disease on the heart are less well-defined. A century of research on Chagas' cardiomyopathy has generated compelling data for pathophysiological models, evaluated the efficacy of therapy in large randomized controlled trials, and explored the social determinants of health impacting preventative measures. Recognizing the commonalities between Chagas' disease and Lyme disease, we speculate on whether some of the lessons learned from Chagas' cardiomyopathy may be applicable to Lyme carditis.

Clinical Practice Guidelines by the Infectious Diseases Society of America, American Academy of Neurology, and American College of Rheumatology: 2020 Guidelines for the Prevention, Diagnosis, and Treatment of Lyme Disease.

This evidence-based clinical practice guideline for the prevention, diagnosis, and treatment of Lyme disease was developed by a multidisciplinary panel representing the Infectious Diseases Society of America (IDSA), the American Academy of Neurology (AAN), and the American College of Rheumatology (ACR). The scope of this guideline includes prevention of Lyme disease, and the diagnosis and treatment of Lyme disease presenting as erythema migrans, Lyme disease complicated by neurologic, cardiac, and rheumatologic manifestations, Eurasian manifestations of Lyme disease, and Lyme disease complicated by coinfection with other tick-borne pathogens. This guideline does not include comprehensive recommendations for babesiosis and tick-borne rickettsial infections, which are published in separate guidelines. The target audience for this guideline includes primary care physicians and specialists caring for this condition such as infectious diseases specialists, emergency physicians, internists, pediatricians, family physicians, neurologists, rheumatologists, cardiologists and dermatologists in North America.