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Mistaken Identity: Many Diagnoses are Frequently Misattributed to Lyme Disease, 2021, Kobayashi et al

Discussion in ''Conditions related to ME/CFS' news and research' started by ola_cohn, Dec 4, 2021.

  1. ola_cohn

    ola_cohn Established Member (Voting Rights)

    Messages:
    90
    Location:
    Australia
    Abstract
    Background:
    Prior studies have demonstrated that Lyme disease is frequently over-diagnosed. However, few studies describe which conditions are misdiagnosed as Lyme disease.

    Methods: This retrospective observational cohort study evaluated patients referred for Lyme disease to a Mid-Atlantic academic center between 2000-2013 who lacked evidence for Borrelia burgdorferi infection. The primary outcome is clinically described diagnoses contributing to symptoms. Secondary outcomes included symptom duration and determination whether diagnoses were new or attributed to existing medical conditions.

    Results: Of 1261 referred patients, 1061 (84%) had no findings of active Lyme disease, with 690 (65%) receiving other diagnoses resulting in 405 (59%) having newly diagnosed medical conditions, 134 (19%) attributed to pre-existing medical issues, and 151 (22%) had both new and pre-existing conditions. Among the 690 patients, the median symptom duration was 796 days, and a total of 139 discrete diagnoses were made. Infectious disease diagnoses comprised only 3.2%. Leading diagnoses were anxiety/depression 222 (21%), fibromyalgia 120 (11%), chronic fatigue syndrome 77 (7%), migraine disorder 74 (7%), osteoarthritis 62 (6%) and sleep disorder/apnea 48 (5%). Examples of less frequent but non-syndromic diseases newly diagnosed included multiple sclerosis (11), malignancy (8), Parkinson's disease (8), sarcoidosis (4) or amyotrophic lateral sclerosis (4).

    Conclusions: Most patients with long-term symptoms have either new or pre-existing disorders accounting for their symptoms other than Lyme disease, suggesting overdiagnosis in this population. Patients referred for consideration of Lyme disease for chronic symptoms deserve careful assessment for diagnoses other than Borrelia burgdorferi infection.

    Keywords: Lyme disease, chronic Lyme disease, misdiagnosis, pain, fatigue, long-term symptoms, post-treatment Lyme syndrome, tick-borne infections

    Open access article
    https://www.sciencedirect.com/science/article/pii/S0002934321007920
     
    Samuel, Perrier, Dolphin and 4 others like this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    Am I being foolish, but surely by looking just at referrals for Lyme’s assessment it is inevitable that you will find more false positives than missed diagnoses, as people where a Lyme’s diagnosis has never been considered as a possibility are much less likely to be referred for Lyme’s assessment?

    Their sample population choice will inevitably identify more false positives than false negatives.
     
    alktipping, sebaaa, Ash and 4 others like this.
  3. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,204
    Many who are mis/diagnosed with Lyme are left on their own to 'figure it out', they then become radicalized on Lyme groups. It's very difficult to get through to them that 'treatments' might be doing more harm.
     
  4. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    1,572
    Radicalized on Lyme groups? As in, forums and such? Does this not sound a bit uncomfortably familiar on any level?

    I suspect many of them know. ;)
     
    Ash, Samuel, alktipping and 3 others like this.
  5. Ash

    Ash Senior Member (Voting Rights)

    Messages:
    1,105
    Location:
    UK
    Introduction

    Oh my how tired am I?
    Let us see?

    Objective One -spread the word that all the patients have common “mental” illnesses instead of common infective illnesses, one of which might be Lyme.

    Objective Two-make a paper any paper in order to support the notion that these Researchers are researching something. When they clearly are not.

    Findings
    N/A

    Conclusions
    Tired. Very tired indeed.
     
    Last edited: Dec 4, 2021
    alktipping and Peter Trewhitt like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    The vast majority of people have no detectable traces of Coronavirus infection past a few weeks. This is the same problem as usual: ball went behind mommy's back, ball is gone, ball never existed.

    However they sometimes have detectable antibodies for other viruses, EBV comes up a lot. Actually Lyme comes up a lot, too. And yet somehow this is dismissed, the very thing that is used here to point: "see? nothing at all". These findings are always interpreted based on what conclusion is preferred. And limited by technology and lack of will.

    How reliable are tests for Lyme? SARS-CoV-2 has a window of a few days for PCR detection, outside of that it's too late. Antibodies wane and there even seems to be a correlation between that and LC. Those tests were done far outside a usual window for active infection, so it's expected.

    But anyway of course those are frequently misattributed the whole thing is a dysfunctional mess ruined by 19th century ideology. Can medicine sort out this mess instead of using their own mess as justification for having failed in the first place? This is very counterproductive.

    There's also no mention of dysautonomia/POTS, but I guess those fall under "anxiety", they almost always do.
     
    alktipping, Peter Trewhitt and Ash like this.
  7. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    1,572
    The authors in the paper write "Patients who had active/recent Lyme disease as a cause of their symptoms were determined based on established criteria."

    Whose established criteria?

    So, is this a retrospective appraisal that assumes a contested diagnostic (probably the STT, that is at the basis of the entire Lyme debate) is okay to use to determine whether these people had Lyme?

    Let's assume they are referencing the ELISA/Western Blot tandem. Even the architects of that at Dearborne back in '94 or whatever knew that the algorithm was not absolute, was not "He is either positive or negative, i.e., he either has Bb or does not, based on this 2T construct." It's NOT black or white, on or off. It never has been.

    Any assumption or insinuation otherwise strikes me as somewhat disengenguous.
     
    Ash, Samuel, alktipping and 1 other person like this.

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