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From the Townsend Letter
November 2003


Web Page Potpourri: Lyme Disease
by Marjorie Roswell

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A column devoted to informative integrative health resources on the Internet

I'll admit to a special interest for the subject of Lyme Disease, having been diagnosed with it five years ago. I combed the web, I went to Lyme medical conferences, I got to know Lyme patients. And back when I thought my head-to-ankle rash was either hives or aliens infecting me from outer space, I even wrote Lyme poetry. I'm mostly a health success story, I might add, who's happy to share some of the best of the web on tick-borne disease.

Columbia Presbyterian Lyme Disease Research Program
Most people think of Lyme as a disease of flu-like symptoms and joint pain. Unfortunately, for many people, Lyme can have serious neuropsychiatric manifestations. The Columbia-Lyme group has an upcoming study focusing on brain imaging techniques to distinguish Lyme from depression and other disorders, and they are currently studying chronic Lyme under an NIH grant. Although most of the site is devoted to medical issues, there's also a brief discussion of some of the controversies surrounding Lyme diagnosis and treatment, at

Lyme Disease Misdiagnosed As...
Sad but true, Lyme has been misdiagnosed as Multiple Sclerosis, Parkinson's, arthritis, lupus, ALS, and ADD. This site is a rich collection of medical and scientific abstracts, along with related news articles. This is a credible, content-rich page. Also, check out the companion site, below.
(March 2007: The above links no longer work,
Try )

Lots Of Links On Lyme Disease
Over 12,000 categorized links on Lyme disease.

Lyme Disease Association of Southeastern Pennsylvania
This group offers an excellent primer, Lyme Disease and Associated Diseases: The Basics. I recommend downloading it, or requesting a bound copy.

Lyme Disease Association
The Lyme Disease Association offers grants for research on tick-borne disease. The all-volunteer organization can help with doctor referrals, and also does a particularly good job at state-level advocacy. Make sure not to miss Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination, and Treatment Guidelines.

Canadian Lyme Disease Foundation
A well-designed site in both English and French. Worth a visit regardless of your location.

Lyme Disease Info
(March 2007: Bad link; use
This is an extraordinarily rich site. It features files that summarize peer-reviewed scientific literature on Lyme and co-infections. It also tells the unfortunate story of the New York Office of Professional Medical Conduct, which has targeted for investigation two-thirds of the New York physicians who treat chronic Lyme disease. The full transcript of related hearings from the NY General Assembly is an invaluable resource, including testimony from experts with important stories to tell. A listserv connected to the site tracks Lyme in the news.

Lyme Disease Network
This widely-used site features a web-based bulletin board and a listing of Lyme support groups in Australia, Canada, Europe, and the United States.

Lyme Disease Foundation
The Lyme Disease Foundation has particularly good photographs of ticks and Lyme rashes. (The rashes don't always look like a bull's-eye. In fact, in half of Lyme cases, people don't remember seeing a rash.)

Lyme Disease Information and Support
Site author Kay notes, "When you say to the doctor, 'Doc, I think my kid has Lyme,' you know what you'll hear/see, the eye roll, the sigh, the 'not another one with Lyme hysteria' look." She captures the essence of what Lyme patients and their doctors need to know, gleaned from 25 years of experience as a patient, and the parent of a child with severe symptoms.

Action Lyme
Navigating this page is like going on a treasure hunt. Though it may make you yearn for a professional web developer's touch, it's worth exploring. It has good information on congenital Lyme transmitted via an infected mom, along with other detailed scientific content. How many times have you heard the falsehood that "a tick must be attached for 48 hours before you can get Lyme?" Research proves otherwise.
March 2007: Site no longer the one referred to above.)

World International Lyme Disease Emergency Rescue Network (WILDER)
This quirky site is "dedicated to truth at this critical time in the world of infectious diseases." Don't miss their extensive links, their helpful "50 Questions and Answers," and the letters to editors.
March 2007: McAfee twice blocked an attempt to download a Trojan virus when the above link was clicked.)

The Lyme Alliance
The personal patient stories on this site can make you cry, but they can also be an invaluable resource to other patients.
March 2007: Above link does not appear to be active, but the site's been archived at

Animated Map Of Reported Lyme
I created this animated map of 48 states, displaying 8 years' worth of reported Lyme data. Red counties indicate a Lyme incidence rate that's ten times the Healthy People 2010 goal.
March 2007: Bad link.)

International Lyme and Associated Diseases Society
If you are a health professional, I recommend joining ILADS. This group understands co-infections--the many tick-borne infections (species of bacteria, viruses, and protozoa), that most doctors neglect. The ILADS diagnostic and treatment guidelines can be found at Their web site reveals that the ELISA test, the standard Lyme screening tool, actually misses 35% of culture-proven Lyme. ILADS also offers position papers on various peer-reviewed articles. Beyond the web page, members can mine other members' clinical experience both via a listserv and conferences.

Stop Ticks on People
This is the best web resource on tick control.

I'll close with a bit of my early Lyme poetry (a "Lymerick"):

The black-hatted, warty-nosed wizard

Made a brew of the blood of the lizard.

And in wood, bush and stick,

She fed every tick

Removing Bb from each gizzard!

For background, note that Berkeley scientists found that ticks who dine on the blood of the Western Fence Lizard are actually purged of their own Lyme infection. This special lizard blood probably accounts for the relatively low rates of Lyme in the Western United States. (Bb stands for Borrelia burgdorferi, a common Lyme species.) Maybe the warty-nosed wizard knew what she was doing, after all.


Marjorie Roswell
3443 Guilford Terrace
Baltimore, MD 21218 USA

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