I have been taking a long time to read “Conquering Lyme Disease” by Drs. Fallon and Sotsky of the Columbia University Medical Center. It is full of research references and discussions that are meant more for those in the research and medical fields. But I’m slogging through. The title seems to suggest, to some anyway, that all the issues have been resolved and Lyme Disease has been conquered. We are still far from that unfortunately. Perhaps the title should be “How We Can Conquer Lyme Disease”. However, it does give some hope that the “great divide” can be bridged – if only people will listen and learn.
I am constantly amazed that the information that is contained therein doesn’t seem to be getting out to a wider audience. “Science Bridges the Great Divide” is the tag line yet those that have control over things like Case Definitions; diagnostics; treatment protocols, and the like, don’t seem to be aware of this information.
For instance “The objective, verifiable clinical criteria used to confirm cases for CDC surveillance, while essential for monitoring the course of disease over time for public health surveillance, have limitations when applied rigidly in the clinical setting where clinicians encounter patients who do not necessarily recall or have these “objective” markers.”
“What is the CDC’s position on the use of their surveillance criteria for clinical care? The CDC recognizes that there are clinical manifestations of Lyme disease that fall outside of the narrow criteria used for the case definition. For over two decades, the CDC’s website for the surveillance criteria has stated:
This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.”
However, in Nova Scotia, and in most, if not all, of Canada, the Case Definition for Lyme Disease (https://novascotia.ca/dhw/populationhealth/surveillanceguidelines/lyme.pdf) appears to still be used for diagnosis by Doctors. Because of this, many cases are missed and not included in the numbers due to the fact that a patient has not presented with a bull’s eye rash or other “objective” markers. In many cases, the lack of these “objective” markers even prevents a patient from being tested, let alone treated. Nova Scotia’s Statement for Managing Lyme Disease (https://novascotia.ca/dhw/CDPC/documents/statement_for_managing_LD.pdf) clearly states that: “Patients with symptoms and signs of early disseminated and late Lyme disease should have serologic testing.” However, it later goes on to state: “Patients presenting with only a nonspecific febrile illness and exposure in an area of lower risk for Lyme disease should NOT be tested.” What are the Doctors to do?
At this point in time in Nova Scotia, we truly do not know what areas are of lower risk as surveillance has either stopped taking place or is not being properly undertaken. The presently utilized map showing lower and higher risk areas has not been updated since 2011 or 2012, other than to change its look. According to the brochure on Lyme disease put out by the Nova Scotia government “Blacklegged ticks have been found in all parts of Nova Scotia. No matter where you live, there is a chance that you have come into contact with a blacklegged tick.” If this is true, why would Doctors be advised NOT to test patients, especially if they have not been diagnosed with anything else. Should not all possibilities be investigated?
“Conquering Lyme Disease” does have a few things that I still believe are a bit out-of-date, based upon research I have read, but, overall, is well rewritten and well researched with many pages of references. It should be on a Must Read list for any and all medical practitioners and politicians so that we can finally move this issue forward, once and for all.
Excellent article. Keep up the good work. I am working my way through ‘Conquering Lyme Disease’
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Spot on…thank you for sharing. Your strength and focus are encouraging.
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