Scientific community discounts Lyme disease patients

alone, depressed, sad

Every year, over 300,000 individuals in the USA alone are concerned that their acute Lyme disease symptoms will progress to chronic manifestations such as Lyme encephalopathy, chronic neurologic Lyme disease, neuropsychiatric Lyme disease, Lyme carditis, and Post-treatment Lyme disease syndrome. [1]

 

The authors of a new review soundly dismiss patients’ concerns regarding chronic manifestations of Lyme disease stating, “The infection annual incidence is modest (< 30,000 cases) and is not supposed to be fatal.” [2]

In dismissing the possible severity of Lyme disease, Peretti-Watel and colleagues failed to take an evidence-based medicine approach (EBM), which integrates clinical experience and patient values with the best available research information.

Instead, the authors took an eminence-based approach, [3] which relies on the omniscience of the organization rather than the evidence. “In the United States the controversy mainly opposes a learned society known as the Infectious Diseases Society of America (IDSA) to a physicians’ association known as the International Lyme and Associated Diseases Society (ILADS),” Peretti-Watel writes.

The authors dismiss “chronic Lyme disease” problems as a controversy rather than a legitimate concern for the general population. 

They express frustration over the general public’s progressive interference with experts’ opinion on Lyme disease.  Yet, it is the general public which suffers the consequences as they try to access needed medical care for the treatment of tick-borne infections.

The experts’ opinions on Lyme disease will continue to be questioned until the general population’s concerns and health issues are successfully addressed.

References:
  1. Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014:1-33.
  2. Peretti-Watel P, Ward J, Lutaud R, Seror V. Lyme disease: Insight from social sciences. Med Mal Infect. 2019.
  3. Pincus T, Tugwell P. Shouldn’t standard rheumatology clinical care be evidence-based rather than eminence-based, eloquence-based, or elegance-based? J Rheumatol. 2007;34(1):1-4.
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Janet Pompei
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Janet Pompei

I have been sick for over 3 years and cannot get a doctor to listen to me. HELP!!!

Peter Owen
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Peter Owen

I know in the USA doctors kind of follow and modern Hippocratic oath? In Australia we have this code of conduct I am sure something in here means doctors have to respect patients and listen and also stay up to date with current information. Are they not failing at that?
https://www.medicalboard.gov.au/Codes-Guidelines-Policies/Code-of-conduct.aspx

Daphne Worsham
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Daphne Worsham

It’s a common attitude in the “scientific community”, that…”I’m the expert, I should know”. As a Lyme patient my daughter is painfully aware of it. The belief that the “expert” is always right is all that keeps many scientists, teachers, professors, and physicians on their pedestals even though they may have little or no direct experience with a specific issue. Chronic Lyme is a complex issue, as anyone connected to it knows. All we can do is keep pushing for better care and spreading the word. I try to use research based information and references whenever possible. It’s too easy… Read more »