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
http://www.columbia-lyme.org/
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 http://www.columbia-lyme.org/flatp/controv.html.
Lyme Disease Misdiagnosed As...
http://www.geocities.com/lymeart3/lyme-misdiagnosed-as.html
http://www.geocities.com/lymeart3/misdiag-links.html
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 http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html )
Lots Of Links On Lyme Disease
http://www.geocities.com/HotSprings/Oasis/6455/
Over 12,000 categorized
links on Lyme disease.
Lyme Disease Association of Southeastern Pennsylvania
http://www.lymepa.org/
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
http://LymeDiseaseAssociation.org/
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
http://www.canlyme.com
A well-designed site in both English and French.
Worth a visit regardless of your location.
Lyme Disease Info
http://www.lymeinfo.net/
http://www.lymeinfo.net/lymefiles.html
http://www.lymeinfo.net/hearingtranscript.html
(March 2007: Bad link; use http://www.lymeinfo.net/hearings.html)
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
http://lymenet.org/
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
http://www.lyme.org/
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
http://www.lymesite.com/
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
http://www.actionlyme.com/
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)
http://www.wildernetwork.org/
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
http://www.lymealliance.org/
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 http://web.archive.org/web/20020803104509/www.lymealliance.org/index.php)
Animated Map Of Reported Lyme
http://www.lymelinks.org/
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
http://www.ilads.org/
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 http://www.ilads.org/burrascano_1102.htm.
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
http://www.stopticks.org/
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
410-467-3727
mroswell@gmail.com
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