The list of links sent with
the monthly emails has been redone/reorganized and
is being sent in a separate email. Please let
Frances Lunney know if you have problems with any of
the links.
Organizations and
Recommended Websites:
The first three websites have
links to help find medical providers:
Lyme Disease Association, Inc.
ILADS
Lyme Disease.Org
The International Lyme and Associated Diseases
Education Foundation
Sister organization to ILADS
with mission of training physicians and supporting
research
Arizona Lyme Disease Association
Global Lyme Alliance
The
International Society for Environmentally Acquired
Illness
Co-founded by Tucsonian Mary
Ackerley, MD, ISEAI is a nonprofit professional
medical society
Environmental Analytics
For mold and indoor air quality
testing
Lyme Disease Information:
How to Handle a Tick Bite
Lyme 101 from ILADS
The History of Lyme Disease42 minute video with
Joseph Burrascano, MD
Symptom List from ILADS
Paving the Way for Better Lyme Diagnostic Tests
Borrellia Spirochetes Are Masters at Evading the
Immune System
Chronic Lyme Do's and Dont's
Diagnostics/Testing:
Lyme Disease Testing- Lyme Disease.org
Lyme Disease Testing Global Lyme Alliance
Choosing a Lyme Disease Test- Daniel Cameron, MD
To Test or Not to Test
Better Lyme Diagnostic Tests
Tick Testing:
IGENEX
Clongen Laboratories
Test Ticks by NJ Labs
Bay Area Lyme Foundation (Currently Free Tick
Testing)In Partnership with Northern Arizona
University. Nationwide Free Tick Testing is
back—and it includes testing for Bartonella! Free
testing available June-October 2019
Note: These are examples of
tick testing labs. There are usually charges for
these services. LDA does not make recommendations
about whether people should have ticks tested,
reliability of tick testing, or whether people
should wait for the results before seeking/getting
treatment. Those are decisions that need to be made
after reviewing material on the topic and discussing
the benefits/risks with a professional.
Children and Lyme Disease:
Facebook Group: When Your Child Has Lyme
Lyme: Kids and Schools
Practical guidance on how to
prevent, screen, treat, and educate children about
Lyme Disease
Lyme Aid for Kids
Prevalence:
Lyme Disease Association statistics
Check out the numbers of Lyme
Disease cases in the US
CAPC: Incidence of Lyme Disease in Dogs
Go to this website and hover
over and click on various parts of any state. You
can see the incidence of Lyme in dogs for each
county. The actual incidence is a least 30 times
that of what's diagnosed and reported on the map,
since they are testing a limited number of dogs. If
you sign up, you will receive a similar email
monthly. It's helpful data to show to providers who
may insist that we don't have Lyme in Arizona.
Lyme Disease as
Epidemic/Pandemic:
Time to Designate Lyme Disease a PandemicArticle
by Daniel Cameron, MD.
Prevention:
Preventing Tick bites
Rynoskin clothing
Chemical Free Clothing for Tick
Bite Prevention. It is ultra light and worn
underneath regular clothing. It prevents ticks,
mosquitoes, chiggers, black flies, ants, no-see-ums,
and other biting insects from entering through
clothing to reach the skin to feed/bite.
Education, Training, CME:
Lyme Disease Basics for Providers
Lyme CME Free evidence based Continuing Education
for Physicians
Please encourage all your
physicians to take these free courses. Physicians
need to take a certain number of CME courses each
year to keep their licenses.
LDA Annual Scientific Conference
The 20th Annual Scientific
Conference will be held on Thursday, October 31 -
Sunday, November 3, 2019, at the Westin Copley Place
in Boston, MA
ILADS upcoming and Past Conferences
Treatment:
Controversies and Challenges in Treating Lyme/TBD -ILADS
Recent research on the importance of persister drug
regimens
Biofilms and stationary phase
persister forms of Bb are resistant to commonly used
antibiotics and can explain in part persistent
symptoms. Recent papers outline the important of
persister drug regimens. 200 patients with Chronic
Lyme/PTLDS where dapsone combination therapy was
shown to be effective for major Lyme symptoms.
To Treat Lyme Disease Focus on the Co-infections
Super responders are key to personalized Lyme
treatment
34%of patients are high
treatment responders (from mylymedata.org)
meaning that they reported that after taking
antibiotics their symptoms improved moderately to a
very great deal.
Wellness Center at Pike Family Health Center
Clinic in Lords Valley, PA that
accepts major insurances that provides diagnostic
testing and verification of tick borne diseases for
adults. Also, patients who have already been
diagnosed and are seeking advice or management of
current symptoms are also eligible for care at the
center.
Co-infections:
Co-infections General Information- Lyme Disease.org
Video on Co-infections by Daniel Cameron, MD
Podcast on Co-infections- Global Lyme Alliance
Lyme Basics- What is Babesia
Bartonella Podcast by Dr. Ed Breitschwerdt
Bartonella, a bacteria most
commonly associated with cat scratch disease which
until recently was thought to be a short-lived or
self-limiting infection. What is new is the
association of Bartonella with a wide variety of
ailments, many of them chronic and some of them
life-threatening.
Books:
Lyme Disease Supercharge: The Revolutionary Approach
to Getting Better when All Else Fails
New book by Bryan Rosner;
Published in March 2019
Beyond a Glass of Milk and a Hot Bath
by Connie Strasheim who battled
severe insomnia for years. She shares insights and
possible answers to this condition in her book,
which is now out in paperback format
Bitten: The Secret History of Lyme Disease and
Biological Weapons
By Kris Newby, May, 2019
While
on vacation on Martha’s Vineyard, Kris Newby was
bitten by an unseen tick. That one bite changed her
life forever, pulling her into the abyss of a
devastating illness that took ten doctors to
diagnose and years to recover.
Toxic
By Neil Nathan, MD, a resource
book for patients and practitioners. Dr. Nathan has
zeroed in on the reality of Toxicity and Chronic
Disease, while providing cutting edge insights into
the most effective therapies.
Lyme Disease Takes on Medicine by Daniel Cameron, MDDecember
2017
How Can I Get Better?
By Richard Horowitz, MD,
February 2017 This guidebook helps individuals
identify their symptoms, and figure out where to go
next. It is a follow-up to “Why Can't I Get Better?”
The Everything Guide to Lyme Disease
By Rafal Tokarz, PhD., an
associate research scientist at the Center for
Infection and Immunity at Columbia. Explains the
debate over "chronic Lyme disease."
Lyme: The First Epidemic of Climate Change By
Mary Beth Pfeiffer April, 2018
https://recipesforrepair.com/about/
A Program to Combat Chronic
Inflammation and Identify Food Sensitivities” by
Gail and Laura Piazza (2016)
Antigerm Action Plans for Lyme Disease
Renowned expert Marty Ross, MD
provides step-by-step practical guides for you.
Based on nearly 20 years of experience treating
thousands of Lyme disease patients. Includes the
full Ross Lyme Support Protocol. Book download is
free if joining his email list.
Research:
Leading Research-ILADS Published research
articles authored by ILADS members
Journal of Spirochetal and Tick-borne Diseases
ILADS provides free access to
back issues of the Journal of Spirochetal and
Tick-Borne Diseases dating from 1994-2002.
Data, Policy and Strategic
Planning:
LDA input to National Institutes of Health Strategic
Plan
My Lyme Data
MyLymeData is one of the
largest patient-driven registries in the nation,
with nearly 12,000 patients enrolled. It was created
by patients, is run by patients and will address the
issues that Lyme disease patients care about. If you
are enrolled in MyLymeData, we thank you for
providing the data that will accelerate the pace of
research in Lyme disease. If you are not enrolled,
please do so today.
Tick Borne Working Group/ Health and Human Services