Garberville Independent – August 25, 2001
by Jentri Anders, PhD
Thank you for your excellent and balanced coverage of the newly formed North Coast Lyme Disease Support Group (NLDSG) in the Aug. 14 issue of the Independent. As a journalist, I appreciate only too well the skill required in compressing extremely complex scientific matters into 25 inches of fair and understandable copy. My former occupation also taught me that few people can bear to be written about without feeling an urge later to tweak it a bit and that is one of the reasons why we have letters to the editor. I’m no exception.
I’m delighted that Daniel Mintz contacted the Humboldt County Department of Public Health and spoke with Jennifer Richmond, its communicable disease specialist. I do, however, wish to clarify one or two points she raised. She is correct that one of the things I feel about the stats on LD in the county is that cases are missed because the county has to use reporting criteria established by the Centers for Disease Control (CDC) and because doctors are too swamped with paperwork from all directions to report all or even most LD cases they treat.
My greatest concern is for all the people being missed in the stats and not being treated for lack of a diagnosis. I cannot believe that I am the only person in Humboldt County, especially in SoHum, with a chronic case of LD caused in part by misdiagnosis. All the doctors I have encountered in the county since LD was first described 25 years ago, are using the CDC’s surveillance criteria for diagnosis, even though the CDC and all the laboratories specifically warn doctors not to do this. The CDC requires positive results on two blood tests known to produce false negatives, especially in cases that were inadequately treated in the early stage.
Richmond is correct that the tests also produce false positives, but that is much less a problem from the victim’s point of view than a false negative. The first makes you (or –significantly–your insurance company) spend more money. The second can lull you into ignoring Lyme symptoms until long past the time when proper treatment could have cured the disease.
I am also worried about all the cases that got diagnosed but were inadequately treated. I know for a fact that many of my friends who were lucky enough to be diagnosed properly received treatment now considered entirely inadequate to eradicate the Lyme bacterium from their bodies. I strongly suspect that some of these people either died from or are now experiencing illnesses that have been linked by rigorous studies to a history of LD. I know for a fact that there are SoHum residents now suffering from illnesses frequently confused with LD. I question whether, in all of these cases, sufficient efforts were made to eliminate LD as a possibility before the patients got locked into their current diagnosis.
Sincerely, Jentri Anders, PhD