When the patient is making the (wrong?) diagnosis: a biographical approach to patients consulting for presumed Lyme disease 2022 Lutaud et al

Abstract

Background
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.

Objectives
To reach a deeper understanding of how patients themselves contribute to the diagnostic process. To describe the genesis of the LD hypothesis in care pathways.

Methods
In 2019, 30 patients from a prospective cohort consulting in the infectious diseases department at University Hospital in Marseille for presumed LD were recruited for semistructured interviews. The inclusion criteria were: suffering from subjective symptoms for 6 months, no clinical or paraclinical argument suggesting current LD. The patients’ medical trajectories were collected using a biographical approach.

Results
The diagnosis of LD was primarily triggered by identification with personal testimonies found on the Internet. Most of patients were leading their own diagnostic investigation. The majority of participants were convinced they had LD despite the lack of medical evidence and the scepticism of their referring GP.

Conclusion
GPs should first systematically explore patients’ aetiologic representations in order to improve adherence to the diagnosis especially in the management of medically unexplained symptoms. Long COVID-19 syndrome challenge offers an opportunity to promote active patient involvement in diagnosis.

Paywall, https://academic.oup.com/fampra/advance-article-abstract/doi/10.1093/fampra/cmac116/6765152

 

So what conclusions can we draw from this?

Not this.

Instead, how about realizing that Lyme diagnostics suck, many people who get sick know this (they are usually not as dumb as doctors consider them), and they don't trust the tests they're given by their GPs. So lets invest some serious research into developing Lyme diagnostics that everyone can trust.

And stop assuming patients are ill-informed rubes.

 

They cannot even do this definitively unless they culture the EM or ACA. Who are the misinformed here?

 

https://www.s4me.info/threads/labor...nd-future-perspectives-2018-lohr-et-al.30130/

 

Well said

The testing reliability is low. Tests in UK are based on the assumption that the patient produces antibodies which has been proven not the case multiple times. The cycle of medical overconfidence keeps trundling on. Kinda why patients push, 'cos they aren't idiots and they can read the same scientific papers their doctors can

Patient history is important for sure. But many people are unaware of tick bites, especially those from nymph ticks, which sadly carry the highest dose of infection(s).

This is mainstream medical thinking. Few patients have their infections treated. Chronic avoidable health conditions are a result. Sad. Mainstream is ignoring an unmet need for health. And sneering at those that push for understanding, science, treatment and medical care. What a scandal. If I'd not been a bit of a pest I'm sure I would have died in 2005 to 2010. No brainer.

Perhaps the only thing likely to move this horror story on is robust testing providing clear, objective evidence of ongoing infection. And such we need tests that work on as many varieties of borrelia as possible. Reliable testing for common tick borne co-infections would be a good thing too

Anytime soon? I doubt it

 

There are a lot of horses in this race, a lot of patent holders that are in positions of influence - which is imo a drag on progress.

 

This paper should be titled: two wrongs actually make a right, or something like that. Because the practice of diagnosing people with BS pseudoscience is even more wrong than people working a possible hypothesis when facing a dead-end.

I will call BS on this based on personal experience. A few years after I got ill, I ended up trying with a psychiatrist, with the intent of having a foot in the system to finally get a GP. Didn't work out but when I found a GP and got my record printed, it was filled with statements that I was certain I had ADHD, when all I ever said (besides the fact that I have difficulty explaining things and finding words) was to check whether it's a possible explanation. I didn't have much to work with at the time and, having a scientific mindset, my approach is to observe, hypothesize and test. What an idea, uh? This was second nature to me in my work as a programmer. It's odd that this is seen as bizarre in healthcare.

I don't know how it got from me asking whether there are tests and if it's worth doing, to my record being filled with several statements that I was absolutely convinced it was the case. Physicians only have their perspective and when they are trained to see something, they'll see it, whether it's there or not. With the biopsychosocial ideology, it's expected that physicians will falsely attribute intent in patients, so this is likely simply distorted data, modified at first input, pretty much the worst failure anyone can do dealing with information.

The first paragraph is puzzling. Tests not often coming up positive for infectious diseases is the norm. Any test panel where positive were high would signal a huge number of undetected positives. Using this as an argument that people are over-testing is all sorts of bizarre, tests aren't useless when negative. But of course the intent is to emphasize how much resources we waste, simply by existing. It's not as if those are tests with high accuracy anyway, this is literally expected.

And, yeah, sick people without an explanation will keeping seeking one. Not understanding that is one of the most absurd realities about modern healthcare, the endless pathologizing of normal behavior that arises out of an abnormal perspective.

 

This particularly strikes me as odd. Cohort participants have to have been sick for at least six months. If that is a requisite, then aside from swollen knees - which by no means happens as frequently as many assume - what symptoms would not be subjective? The EM will have usually resolved on its own (not sure about ACA), there'd be no fever by 6 months...What am I missing? Every Lyme symptom I can think of at the 6 month mark would be subjective.

And they invoke the Internet boogeyman. You know the argument is likely weak when Internet patient contamination is resorted to.

 

That's where you went wrong, I remember interviewing an academic in philosophy of science. Medicine isn't science. It's inference-based. That's why the calls about basing said inferences on 1950s males isn't 'feminism' but a bit of a red flag.

Too many docs confuse having to have ticked the box on chemistry at some point early on with parroting 'think horses not zebras'. And assume all/what they do is science. Even if their specific job actually generally isn't. No memory of Popper's Theory at all.

 

Good to hear there are potentials in the offing. Would be good if this was not impeded
Fingers crossed

 

Im sorry I wrote so ambiguously. There have been some good tests (imo) that at least seemed to have merit (one a PCR, one urine-based, one culture-based), but friction from within the system, including competing tests from different earlier patent holders, kept the current testing favorites secure. At least that's my read.

 

Thanks for clarifying. Appreciated. I was hoping that the rapid culture test being developed a few years ago would be useful. Trouble replicating I recall. No sure if it is dead in the water?

Patients and doctors need evidence of ongoing infection otherwise no treatment. Simple as really. And there is evidence of inability to produce antibodies so such tests looking for this will lead to the same old. i.e. no treatment and circular arguments that leave patients sick

I so wish it was different