Welcome to the Northcoast Lyme Disease Support Group, a source of online information and assistance on the diagnosis, treatment, politics and coping strategies of Lyme disease. Though the information here is aimed specifically at residents of Humboldt, Mendocino and Del Norte Counties in California or persons who may have contracted the disease in those counties, we hope this information will be useful to everyone, and we offer feedback to everyone who requires it.
The Lyme disease situation is complicated by the complexity of the pathogen itself, the fact that several tick-born diseases may be transmitted at once, all treatments have potential side effects and, not least, by sociological factors such as the economics of research funding, conflicts of interest and the economic priorities of insurance companies. We therefore recommend that people just beginning to research Lyme disease start with the introduction below and with general articles before tackling the more specific information offered here.
An Introduction to Lyme Disease and the Conflicting Viewpoints
Since its formal recognition in the U.S. in the early 1970s, Lyme disease has become known to alert citizens across the country, for some of them, the hard way. It came to the attention of the medical world after two concerned mothers in the area of Old Lyme, Connecticut, contacted public health authorities about an unexplained rise in juvenile arthritis in their neighborhoods. Subsequent research established that the arthritis was one symptom of what is now called Lyme disease. It is now known to be caused by a species of bacteria, Borreliosis burgdorferi, and carried in the United States by particular species of ticks, though that is not the only means of transmission.
During the 30-plus years Lyme has been under scientific scrutiny, two conflicting viewpoints have developed as to its frequency, distribution, diagnosis and treatment. One is the mainstream view presented by the Centers for Disease Control and Prevention (CDC), the National Institutes of Health, Yale University and the better-known medical organizations. The other is presented by a large and growing group of Lyme doctors and patients and their organizations. The first minimizes the seriousness of the disease and problems in treatment that have been well-documented in the last decade, in studies mainstream journals will not publish. The second, accepting these studies and the years of on-the-ground observation done by family doctors, often Lyme victims themselves, sees it as a potentially crippling, even fatal, disease in need of much wider research, a more inclusive standard for diagnosis, better testing and much more aggressive treatment.
The personal experience of the author of most of the materials presented here indicates that doctors in northern California are following, most without question, the mainstream view. (see “from jentri”, the personal statement of Jentri Anders, PhD). This is in spite of the fact that northern California is accepted by even the CDC as an area endemic for Lyme disease. Northern California doctors are largely ignorant of the details of the controversy and the fact that it is rooted in the politics of insurance providers and research funders and in the corporate irresponsibility of pharmaceutical companies
The materials presented here are aimed at helping individuals weave their way through the conflict in order to realistically assess their own chances of having the disease and getting it appropriately treated so as to minimize permanent damage or fatality. Although both positions have been well researched and published, the purpose of this website is to provide assistance to potential Lyme patients by presenting the view of the second group, which does not receive the respect or publicity that the first group does. The mainstream view can be easily found on the standard medical websites, through the CDC or any public health agency.