Diagnostic pathways of patients consulting at the infectious diseases ward for presumed Lyme disease (preprint), 2020, Lutaud et al

[Dolphin]

Open access:
https://hal-amu.archives-ouvertes.fr/hal-02915010/document

Diagnostic pathways of patients consulting at the infectious diseases ward for presumed Lyme disease : a qualitative descriptive study.

Romain Lutaud1,2,3, MD, MA; Pierre Verger2 , MD, PhD; Patrick Peretti-Watel2,3 , PhD; Carole Eldin3,4, MD, PhD.

Authors Affiliations:
1. Aix Marseille Univ, Département de médecine générale, Marseille, France. 2. ORS PACA, Observatoire régional de la santé Provence-Alpes-Côte d’Azur, Marseille, France. 3. Aix Marseille Univ, IRD, AP-HM, SSA, VITROME, Marseille, France. 4. IHU-Méditerranée Infection, Marseille, France.

Corresponding author: Romain Lutaud, MD, MA, Aix Marseille Univ, Département de médecine générale, 27 Boulevard Jean Moulin 13385 Marseille Cedex 5, France. Email: romain.lutaud@univ-amu.fr / Phone+33 634 632 631

Abstract

Objectives: Media coverage of Lyme disease (LD) has led to an increase in consultations for presumed LD in Europe. However, LD is confirmed in only 10-20% of patients, with a significant number remaining in a diagnostic dead-end. The objective of our study was to understand the genesis of the LD hypothesis in care pathways.

Methods: In spring 2019, we recruited for semi-structured interview the first 30 consecutive patients from a prospective cohort consulting in the infectious diseases department at University Hospital in Marseille for presumed LD. The inclusion criteria were: age ≥18 years, subjective symptoms for ≥ six months, no clinical or paraclinical argument suggesting current LD. The patients’ medical trajectories were collected using a biographical approach by combining sequences from the interviewee’s life and developing themes related to the medical history.

Results: The average duration of symptoms was 8.5 years. A majority of participants were convinced they had LD despite the lack of medical evidence and the scepticism of their referring GP. The diagnosis of Lyme disease was primarily triggered by identification with clinical stories circulating in the media. Most of participants had conducted the diagnostic investigation themselves.

Conclusions: Patient empowerment in the diagnostic process suggest a failure of modern medicine to propose solutions for medically unexplained symptoms. Clinicians should systematically explore patients’ etiologic representations in a patient-centred care approach in order to create the conditions for a therapeutic alliance.

Key Words: Lyme borreliosis, post-Lyme disease syndrome, medically unexplained symptoms, social sciences, medical uncertainty.
Abbreviations:
LD: Lyme Disease
GP: General Practitioner
COREQ : COnsolidated Criteria for REporting Qualitative research

 

[rvallee]

Patient empowerment in the diagnostic process suggest a failure of modern medicine to propose solutions for medically unexplained symptoms

It's almost certain that not all those cases will be Lyme disease but the diagnosis of Lyme disease is very unreliable. This happens to be a very topical issue right now, that tests are not always reliable. Even about the most important diagnosis in the world, the whole of medicine focused on it and, still, very unreliable. This flaw is currently talked about on a daily basis, is central to the difficulties we face with the pandemic. This is even widely known about Lyme disease.

Yet these people can't possibly imagine that. Now that's a failure of the diagnostic process if I've ever seen one. I'm not exactly clear what aspect of this falls under "patient empowerment". As powers go, this is as powerless as it gets.

And their suggestion is to do the thing that has failed for decades, has no chance of success because gaslighting is exclusive with a so-called "therapeutic alliance" and has basically no room left to grow, since it's fundamentally contrarian and gets no benefit from technological progress, other than in eventually fully invalidating.

So in a nutshell this is the failure blaming the failed. Brilliant. Smart. These people went to school for ten years and this is what they do with it. Catholic priests used to do that for free. Demons. Conversion disorder. Same difference.

 

[duncan]

The inclusion criteria are silly, and are predictive of the findings. What does France know about Borrelia other than what the US tells it? If they used the 2T CDC testing to argue no clinical evidence for Lyme, there's more than a fair chance some of these poor souls in fact had/have Lyme. Who's doing the presuming here?

 

[rvallee]

The inclusion criteria are silly, and are predictive of the findings. What does France know about Borrelia other than what the US tells it? If they used the 2T CDC testing to argue no clinical evidence for Lyme, there's more than a fair chance some of these poor souls in fact had/have Lyme. Who's doing the presuming here?

Contrarian opinions never have to make sense. Some people really, really like being wrong. It's seriously weird. They would bash their own face with a shovel before admitting to have ever been wrong.

 

[duncan]

It's seriously weird.

Yep.

They build a mouse trap that, it would appear, in their eyes at least, virtually ensures they catch no person with Lyme, then appear to scratch their heads at delusional patients' beliefs they have Lyme.

Is it possible the patients know something these researchers do not? Hard to tell from the abstract. Where did these guys pull the "LD is confirmed in only 10% - 20% of patients", I wonder? What patients? Confirmed how? Do these participants have other Lyme data that does not conform to IDSA-type requisites?

That Lyme and other TBD's occupy a landscape riddled with diagnostic liabilities seems of little concern to these researchers, so long as they can introduce MUS.