TOUCHED BY LYME: A quick introduction to Lyme disease
The following links provide a good overview of different aspects of Lyme disease:
www.lymedisease.org LymeDisease.org gives info about ticks, Lyme disease, co-infections, prevention, risk maps, downloadable brochures, blogs, news and events. In addition to its website, LymeDisease.org also publishes a quarterly journal, The Lyme Times, free to members. (Click here to join.) We post Lyme-related news on Facebook and Twitter and maintain a network of state-based online support groups. Sign up for our free email newsletters.
MyLymeData is LymeDisease.org’s survey tool that tracks patient progress over time. It allows patients to quickly and privately pool diagnosis and treatment experiences. When large amounts of data are combined, we can see patterns that help us determine which treatments work best. Add your Lyme data to MyLymeData to help find a cure for Lyme disease.
Dr. Burrascano’s Lyme treatment guidelines. Print out this 37-page document and highlight the parts that pertain to you. Take a copy to your doctor.
ILADS–International Lyme and Associated Diseases Society. Professional organization for doctors who treat Lyme disease. Lyme info, educational videos, downloadable brochures.
LDA–Lyme Disease Association. Lyme information, doctor referral site, annual Lyme scientific conference.
Lyme Disease: The Basics–free PDF of book. Published by the Lyme Disease Association of Southeastern Pennsylvania.
Children and Lyme disease
Basic info about children with Lyme disease
Lymeparents online support group
Children’s Lyme Disease Network
LymeAid4Kids–Financial assistance for Lyme treatment for those under age 21.
Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.
When Your Child Has Lyme Disease: A Parent’s Survival Guide (book) by Sandra Berenbaum and Dorothy Kupcha Leland.
Healthy Mom Best Prescription for Healthy Baby (The Lyme Times)
PANS/PANDAS
More info:
How to protect yourself from ticks
What do you do if you get a tick bite?
Neurological manifestations of Lyme.
Lyme disease and cognitive impairments
Gastrointestinal manifestations of Lyme.
Psychiatric manifestations of Lyme.
Mold
Lyme and pets
Basic information about Lyme and pets
Dogsandticks.com Educational website by Idexx Labs. Includes a US map down to the county level, showing where dogs have tested positive for Lyme, anaplasmosis, erhlichiosis and other diseases. Also, information about protecting your pet from tick-borne diseases.
CAPC The Companion Animal Parasite Council has comprehensive information about how to protect your pets from ticks and other parasites.
Recommended books, publications, articles and films:
Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic disease, by Dr. Richard Horowitz.
The Beginner’s Guide to Lyme Disease, by Nicola McFadzean, ND.
The Lyme Disease Solution, by Dr. Kenneth Singleton
The Lyme Diet, by Dr. Nicola McFadzean. What to eat while healing from Lyme.
Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub.
When Your Child Has Lyme Disease: A Parent’s Survival Guide (book) by Sandra Berenbaum and Dorothy Kupcha Leland.
Poughkeepsie Journal’s investigative series about Lyme disease.
Watch “Real Housewife” Yolanda Foster‘s 11-minute speech about Lyme disease. A stirring tribute to the struggle of Lyme patients everywhere.
Under Our Skin, award-winning Lyme documentary film.
Public Health Alert, monthly newspaper on Lyme and other health-related issues. Read it free online.
Lyme articles on Huffington Post by Dana Parish
Lyme articles on Huffington Post by David Michael Conner
Financial assistance:
LymeTAP.com–Lyme Testing Access Program. Financial assistance for Lyme diagnostic testing. (US residents only.)
LymeSAVERS.com–Financial assistance for Canadians with Lyme disease.
Info about how to save money on medical lab tests.
Needymeds.com–Financial assistance for obtaining medication.
Free online book, Infusing for Lymies, lots of information about PICC lines and IV drugs.
Filing for disability benefits when you have Lyme.
Free pdf of book, Good and Cheap, a cookbook geared towards helping people eat tasty, nutritious food on a severely restricted budget.
Outside of the United States:
Canadian Lyme Disease Foundation
Lyme Disease Action (UK)
Lyme Disease Association of Australia
Karl McManus Foundation (Australia)
AussieLyme (online support group)
Association Luxembourgeoise Borréliose de Lyme (Luxembourg)
Onlyme-aktion.org (Germany)
.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
Has anyone ever been ‘cured ‘ of chronic Lyme?
It depends on how you define “cured.” Many people find that they improve substantially with Lyme treatment and are able to return to a normal level of functioning. That doesn’t necessarily mean that they don’t still have “reminders” of the fact they have Lyme. See Jennifer Crystal’s blog, “Recovery is a long slow balancing act.” https://www.lymedisease.org/jen-crystal-lyme-recovery-2/
dorothy,
OUTSTANDING list of really great links which i’ve seen/read over the years! ALL of us will benefit from your taking the time to organize this dorothy. KUDOS from us all.
bettyg, iowa activist
Hi Dorothy, A wonderful list of references. Yes, Perry Fields is essentially “cured.” You can look her up on a search engine. She is a wonderful source of information ans has written a book. Her book helped me find resources. I knew I had oral/dental/gum/jawbone problems and did not know what to do. She was my first source of information. Her book is easy to read and takes you through her journey of healing. it is an encouraging book for new Lymies.