Internet-based self-diagnosis of Lyme disease caused death in a young woman with systemic lupus erythematosus

Střížová, Zuzana; Pátek, Ondřej; Vı́tová, Lenka; Horáčková, M; Bartůňková, Jiřina

doi:10.1016/j.jbspin.2018.12.011

Cited by 13 publications

(11 citation statements)

References 8 publications

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“…Patients anchored in misconception based on either their personal interpretation of information acquired from a reliable source, or planted false data, may head toward self-harm. 1 In this setting, doctors are still responsible and reliable for patient care. They must work harder to clarify the real information and convince the patients about what is true and what is not.…”

Section: Could Sns Be Harmful For Doctors?mentioning

confidence: 99%

“…One of the biggest traps the internet can pose to lupus patients is the inappropriate or inaccurate information they may have access to 10 or sometimes even their own misinterpretation of data. 1 Thus, adequate supervision of support groups, forums, or posts is especially important. A trained expert overseeing these kinds of activities could provide competent insight related to perception of facts or advice, as well as guidance for patients' requirements and requests.…”

Section: Misinformationmentioning

confidence: 99%

“…This partly happened because of her belief to have Lyme disease, based on internet sources. She strongly rejected her real diagnosis of systemic lupus erythematosus (SLE) and refused treatment even after developing multiple organ failure, leading to her demise.” 1…”

Section: Introductionmentioning

confidence: 99%

“…She strongly rejected her real diagnosis of systemic lupus erythematosus (SLE) and refused treatment even after developing multiple organ failure, leading to her demise." 1 In the digital era, the internet and online social networking sites (SNS) considerably surpassed their initial status as alternative sources of interpersonal relations and information and rapidly became a common daily habit for multiple purposes, including medical data, knowledge, and advice. This is true for both doctors and patients, using personal or professional SNS to improve healthcare and awareness involving many areas in medicine.…”

Section: Introductionmentioning

confidence: 99%

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Systemic lupus erythematosus on social networking sites: Friends or foes?

Dima

Abida

Sadovici-Bobeica

et al. 2021

Lupus

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Systemic lupus erythematosus (SLE) is one of the most studied autoimmune diseases. The interest shown for this pathology is translated into international scientific journals, congresses, meetings and, recently, in large data available online. Social networking sites (SNS) have gradually advanced from ways to facilitate interpersonal relations to important sources of information, including medical data regarding SLE, with sites largely accessed by both doctors and patients. Albeit the use of SNS can be valuable in providing education and promoting development of public health, it can be misleading if unprofessional sources of information are used; therefore, both “friends and foes” of the data accessed on large scale should always be considered. This viewpoint is a discussion of the potential benefits and harms related to the SNS use for SLE patients as well as for their physicians.

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Section: Could Sns Be Harmful For Doctors?mentioning

confidence: 99%

Section: Misinformationmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Systemic lupus erythematosus on social networking sites: Friends or foes?

Dima

Abida

Sadovici-Bobeica

et al. 2021

Lupus

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“…Most patients recover from persisting symptoms with time 164,166,167 . Instead, self-diagnosed LB, misdiagnosed LB by physicians, or treatment of suspected LB not meeting the criteria for LB Introduction -Clinical manifestations and disease epidemiology -27 -can lead to serious, sometimes deadly complications as other severe disease may be ignored [167][168][169] . However, approval for use is not expected in the near future 146,175 .…”

Section: Post-treatment Lyme Disease Syndrome or Post-lyme Disease Symentioning

confidence: 99%

Molecular and serological tools for clinical diagnostics of Lyme borreliosis - can the laboratory analysis be improved?

Lager

2020

Linköping University Medical Dissertations

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Lyme borreliosis (LB) is caused by spirochetes within the Borrelia burgdorferi sensu lato complex and is the most common tick-transmitted disease in the northern hemisphere. The transmission of the spirochetes to humans in Europe is done by the Ixodes ricinus ticks, which can also transmit the relapsing fever species Borrelia miyamotoi. LB may cause clinical manifestations in the skin, in the central nervous system, in joints, and in the heart. Diagnosis of LB is mainly based on the patient´s medical history, self-described symptoms, and clinical signs in combination with the detection of Borrelia-specific antibodies (serological methods). In some cases/issues, detection of Borrelia-specific deoxyribonucleic acid (molecular methods) may be used as a complement to serology. All diagnosed LB infections are treated with antibiotics to prevent disease progression, and most patients fully recover without further sequelae. The overall aims of this thesis were to evaluate molecular and serological tools for laboratory diagnosis of LB, with a special focus on Lyme neuroborreliosis (LNB), and to identify potential improvements. The results presented in this thesis showed that the immunoglobulin (Ig) G assays, currently in use in northern Europe for detection of antibodies in serum, had high diagnostic sensitivity (88 %) together with comparable results both between and within assays. For the IgM assays, the diagnostic sensitivity was lower (59 %) with more heterogeneous results. Small variations in diagnostic performance for IgM and IgG were mainly presented for samples within the borderline zone. These results support the theory that separate testing of IgM antibodies in serum has low diagnostic value. However, simultaneous detection in serum and cerebrospinal fluid (CSF) for both IgM and IgG antibodies was essential for the diagnosis of LNB, at least for certain assays. So far (to our knowledge), no systematic evaluation and optimisation of the pre-analytical handling of CSF samples before molecular testing has been performed. By use of the precipitate concentrated by moderate centrifugation, extraction of total nucleic acid followed by reversetranscription to complementary deoxyribonucleic acid, in combination with the absence of Abstract polymerase chain reaction (PCR) inhibitors, detection of Borrelia garinii, Borrelia afzelii, Borrelia burgdorferi sensu stricto, and B. miyamotoi was possible. These four species are all known to be pathogenic to humans. The results revealed a high analytical sensitivity and specificity for the optimised pre-analytical conditions. The thesis also presents results showing that the real-time PCR protocols currently used in Scandinavia have high analytical sensitivity, specificity, and concordance. This indicates that the low diagnostic sensitivity for detection of Borrelia in CSF was not a result of poorly designed and evaluated PCR protocols, but was possibly due to the low number of spirochetes in the samples. However, to further evaluate the diagnostic performance for detection of Bo...

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Borrelia burgdorferi and autoimmune mechanisms: implications for mimicry, misdiagnosis, and mismanagement in Lyme disease and autoimmune disorders

Doskaliuk,

Zimba

2024

Rheumatol Int

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The genus Borrelia encompasses a diverse group of spirochetes transmitted primarily by ticks, with Borrelia burgdorferi causing Lyme disease, which is prevalent in North America and Europe. Borrelia’s structural adaptations and ability to persist in diverse host tissues underscore its pathogenic potential. Beyond traditional infectious responses, Borrelia engages in complex interactions with the host immune system, contributing to autoimmune mechanisms such as molecular mimicry and persistent infections. This intricate interplay manifests in symptoms resembling various autoimmune diseases, including systemic lupus erythematosus, dermatomyositis, local scleroderma, and systemic sclerosis. However, these associations lack a precise explanation, emphasizing the need for further investigation. The cases of misdiagnosis between Lyme borreliosis and autoimmune diseases highlight the critical importance of accurate diagnostics and adherence to guidelines. Understanding Borrelia’s impact on immune responses is pivotal for advancing diagnostics and targeted therapeutic interventions in Lyme borreliosis and its potential autoimmune implications.

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Internet-based self-diagnosis of Lyme disease caused death in a young woman with systemic lupus erythematosus

Cited by 13 publications

References 8 publications

Systemic lupus erythematosus on social networking sites: Friends or foes?

Systemic lupus erythematosus on social networking sites: Friends or foes?

Molecular and serological tools for clinical diagnostics of Lyme borreliosis - can the laboratory analysis be improved?

Borrelia burgdorferi and autoimmune mechanisms: implications for mimicry, misdiagnosis, and mismanagement in Lyme disease and autoimmune disorders

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