I am having trouble reconciling all the competing information - how can there be such a difference of opinion about Lyme between really smart people!
Factionalism and ego. The science is on the side of Lyme being as difficult to treat as TB, this is how it happened:
From 1977-1980, a team at Yale University headed by Alan Steere “discovered” and then defined a new disease, which he initially called Lyme arthritis. Steere noted in his early publications that approximately 25% of the people in his study cohorts had a very unique clinical feature – a rash called an erythema migrans or EM which resembles a bulls-eye – that sometimes accompanied other non-specific but debilitating symptoms (joint/muscle pain, headaches, peripheral nerve pain and sensations, fatigue).
As a newly minted "Epidemiology Fellow" of the CDC, he had been trained to look for clinical signs associated with disease symptoms, which could be "objectively" observed by a physician without relying on "subjective" reports by patients about
what aches and pains they might be having. The unusual skin rash was just such a perfect, pathognomonic, feature.
Having noted and associated this unique rash with patients showing a similar cluster of subjective symptoms, his next studies set out to investigate the association of the rash with the disease. Steere’s subsequent studies were DESIGNED to CONFIRM what he wanted to be true – that the EM was a clinical sign of this new disease – as opposed to designing studies to impartially study the occurrence of the rash in people with the cluster of symptoms typical of people with Lyme disease. This is an example of a notable type of research bias, referred to as confirmation bias.
Steere also overemphasized the significance of joint swelling as a clinical sign of “Lyme arthritis,” because he was, after all, a rheumatologist, and therefore pain in a joint that was swollen could be taken as a “sign” of a disease process. Joint pain without obvious swelling was considered a nonspecific symptom that did not point to anything in particular.
The 1980s came along and New York decided that maybe they should look into this "new" disease since Long Island shares a body of water with Connecticut. SUNY Stony Brook on Long Island had a research team looking at ticks and diseases, so in 1982, the NYS Department of Health launched a study to find out just how many cases of this new disease there were in New York, to decide if the State should consider whether a public health response was needed.
The design of this study was for the Department of Health to alert
New York State health care providers, through newsletter publications and also by sending letters to 300 primary care physicians, about
the new disease and provide them with specific and detailed information and pictures about
what to look for FIRST -- a unique rash shaped like a perfect bulls-eye.
The letters directed health care providers to fill out a form for each patient seeking medical care for (in order of emphasis): a rash with a bulls-eye appearance; aseptic meningitis; facial paralysis (Bell’s Palsy); or large joint arthritis with swelling.
The inherent bias in the design of this research is obvious. The study directed a naïve population to be on the lookout for a new disease hallmarked by a specific type of rash shaped like a bulls-eye.
So what do you think got noticed by the physicians who participated in this study – the patients walking in the door with a bulls-eye rash, or the ones complaining about
fatigue or headaches or pain in their non-swollen joints?More...
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