Announcements and Links
Lyme Disease Association of Southern Arizona's Fall/Winter meeting agenda:
Tucson/ LDASA Winter Meetings All are welcome! We continue to meet every other month. No membership. Open to people with Lyme and other Vector-Borne Diseases (or being evaluated for them), their family and friends, providers, and researchers.
January 2023 Wishing you a Happy and Healthier New Year! No Meeting.
February 19th Sunday Awareness and Fundraiser 3-5:30 pm
The Loft Theatre is showing the new Lyme documentary The Quiet Epidemic. Sponsored by LDASA.
This is a special community screening of the award-winning Lyme disease
documentary The Quiet Epidemic
Sunday, February 19
3:00 PM
Followed by Q&A
The Loft Cinema | Screen #3
3233 E Speedway Blvd
Tucson, AZ 85716
Tickets: $10
Benefitting LDASA
On sale: https://loftcinema.org
Learn more about the film and take action:
www.thequietepidemic.comAfter years of living with mysterious symptoms, a young girl from Brooklyn and a Duke University scientist are diagnosed with a disease said to not exist: Chronic Lyme disease. The Quiet Epidemic follows their search for answers, which lands them in the middle of a vicious medical debate. What begins as a patient story evolves into an investigation into the history of Lyme disease, dating back to its discovery in 1975. A paper trail of suppressed scientific research, and buried documents reveals why ticks -- and the diseases they carry -- have been allowed to quietly spread around the globe. 1h 42m. Followed by ½ hour post show discussion.
"The Quiet Epidemic does what any good investigative doc should do – it informs, infuriates, breaks your heart, and fills you with hope... it is an alarming call to action that should be required viewing for anyone involved in health, science, or politics." by Mark Johnson Awards Review
March 11th, Saturday Reserve your eBook or print copy from the Tucson Public Library now: Location: Woods Library on 1st Ave. Meeting room 2nd on right. 2-3 pm: Book discussion of Invisible Kingdom: Reimaging Chronic Illness by Meghan O’Rourke.
A New York Times bestseller. There are numerous copies available from the library.
“A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier”.
3-4 pm: Group Support April No Meeting
For questions or more information contact: Paula- Paulaazlyme@gmail.com Jane- 520-245-6103
Tax deductible donations are gratefully accepted. Please send a check to: LDASA PO Box 35637 Tucson AZ 85740
Announcements and links are here: https://ldasa.org/announcements-and-links
Facebook page: https://www.facebook.com/LymeSouthernAZ
DISCLAIMER:
All information posted on this site is provided for educational purposes only. It is not to be construed as medical advice regarding the treatment of any symptoms or disease. You should obtain medical advice of your personal physician before pursuing any treatment mentioned here.
Links List for Tick Borne Diseases
Organizations and Recommended Websites:
The first three websites have links to help find medical providers:
Lyme Disease Association, Inc.
The International Lyme and Associated Diseases Education Foundation
Sister organization to ILADS with mission of training physicians and supporting research
The International Society for Environmentally Acquired Illness
Co-founded by Tucsonian Mary Ackerley, MD, ISEAI is a nonprofit professional medical society
For mold and indoor air quality testing
Lyme Disease Information:
The History of Lyme Disease 42 minute video with Joseph Burrascano, MD
Paving the Way for Better Lyme Diagnostic Tests
Borrellia Spirochetes Are Masters at Evading the Immune System
Diagnostics/Testing:
Lyme Disease Testing- Lyme Disease.org
Lyme Disease Testing Global Lyme Alliance
Choosing a Lyme Disease Test- Daniel Cameron, MD
Tick Testing:
Note: These are examples of tick testing labs. There are usually charges for these services. We do 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
Practical guidance on how to prevent, screen, treat, and educate children about Lyme Disease
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 Pandemic Article by Daniel Cameron, MD.
Prevention:
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.
ILADS upcoming and Past Conferences 2020 ILADS conference will be virtual/online Septem per 10-13, 2020.
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
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.
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.
An Experts Guide to the Science of Lyme Disease by Daniel Cameron, MDDecember 2017
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
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.
