TOUCHED BY LYME: Resources to get you going in the right direction
LymeDisease.org is one of the foremost Lyme patient advocacy organizations in the United States. We provide a wealth of information on our website–about ticks, Lyme and other tick-borne diseases, prevention, diagnosis and treatment.
Special features include:
Symptom Checklist: After answering a series of pertinent questions, patients can print out the filled-in form and take it to their doctor—where the education process continues. The printout describes basic facts, explains the two standards of care for Lyme disease, and endorses the ILADS guidelines. It’s a way to help your doctor help you.
Physician Directory: Find a Lyme-literate practitioner near you.
Our blogs keep the Lyme community up to date on news, analysis and opinion.
Social media. We spread the word via Facebook, Twitter, Instagram and Pinterest.
Our free weekly email newsletters keep you informed on Lyme-related developments. Click here to sign up, or text LYMENEWS to 22828.
US National Lyme Online Support Group: A place to share information and emotional support for people dealing with Lyme and other tick-borne diseases. In addition to the national group, there are sub-groups for individual states and for parents of children with Lyme disease.
MyLymeData patient registry: This big data research project allows patients to privately pool information about their Lyme disease experiences. So far, more than 13,000 people have enrolled in the project, providing over 5 million data points, on Lyme disease demographics, tick bites, diagnosis, symptoms, lab tests, co-infections, treatment and quality of life. Add your Lyme data to MyLymeData to help find a cure for Lyme disease.
ILADS–International Lyme and Associated Diseases Society. Professional organization for doctors who treat Lyme disease. Lyme info, educational videos, downloadable brochures.
Children and Lyme disease
Basic info about children with Lyme disease
Gestational Lyme disease LymeHope, a Canadian Lyme advocacy organization, has taken a particular interest in the issue of mother-to-fetus Lyme transmission.
Online support group for parents of children with Lyme (This is a subgroup of the US National Lyme support group.)
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.
LivLyme Foundation–Financial grants for children with Lyme disease (under 21).
Book: When Your Child Has Lyme Disease: A Parent’s Survival Guide by Sandra Berenbaum and Dorothy Kupcha Leland.
Article: Healthy Mom Best Prescription for Healthy Baby (The Lyme Times) (PDF)
PANS/PANDAS
ASPIRE: The Alliance to Solve PANS and Immune Related Encephalopathies
New England PANS/PANDAS Association
Childhood Interrupted: The Complete Guide to PANDAS and PANS (The author of this book, Beth Alison Maloney, is the mother of a child who healed from PANDAS. She is an attorney/advocate for the recognition and treatment of PANS/PANDAS, and advises parents about legal issues related to PANS/PANDAS.)
Ticks
How to protect yourself from ticks
Find the repellent that’s right for you (EPA website)
Help! I’ve gotten a tick bite. Now what?
TickEncounter Resource Center—University of Rhode Island
Tick testing. There are various places to get ticks tested. Here are several: IGeneX, TickCheck, Ticknology, Tick Report
Mast cell activation syndrome and food-related issues
MCAS, when your immune system goes haywire
The agony of mast cell activation syndrome (MCAS)
Healing from mast cell activation syndrome
What to eat when you’re allergic to everything?
Alpha-gal syndrome
There is growing evidence that certain types of tick bites can trigger alpha-gal syndrome (AGS) a life-threatening allergy to red meat and meat-related products.
Alpha-gal syndrome–symptoms, diagnosis, treatment
Other Lyme-related symptoms & issues
Lyme disease and cognitive impairments
Gastrointestinal manifestations of Lyme
Psychiatric manifestations of Lyme
Medical marijuana and Lyme disease
The dreaded Jarisch-Herxheimer reaction
Morgellons
The Charles E. Holman Morgellons Disease Foundation
Morgellons: The legitimization of a disease (book review)
Skin Deep: The Battle Over Morgellons (documentary film)
Treating Lyme disease with disulfiram
What is disulfiram and why does it spark excitement in Lyme community?
Treating psychiatric Lyme symptoms with disulfiram
Coinfections
The Lyme Times Special Issue on Co-infections (PDF)
About Lyme disease co-infections
Mold
Dealing with Lyme disease and mold illness at the same time
How to donate blood and tissue for Lyme research
Lyme and pets
Basic information about Lyme and pets
Parasite prevalence maps Educational website 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.
Companion Animal Parasite Council website has comprehensive information about how to protect your pets from ticks and other parasites.
Books
Lyme: The First Epidemic of Climate Change, by Mary Beth Pfeiffer.
Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Dr. Richard Horowitz.
How can I get better? An Action Plan for Treating Resistant Lyme and Chronic Disease, by Dr. Richard Horowitz
TOXIC: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness, by Dr. Neil Nathan.
Conquering Lyme Disease: Science Bridges the Great Divide, by Brian A. Fallon, MD, and Jennifer Sotsky, MD
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 by Sandra Berenbaum and Dorothy Kupcha Leland.
Film and Video
Under Our Skin, award-winning Lyme documentary film.
Under Our Skin 2: Emergence (sequel)
Financial assistance:
LymeTAP.com–Lyme Testing Access Program. Financial assistance for Lyme diagnostic testing.
Needymeds.com–Clearing house for information about various kinds of financial assistance for obtaining medication.
Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.
Lyme Treatment Foundation–financial assistance for Lyme treatment. No age restrictions.
LivLyme Foundation–Financial grants for children with Lyme disease.
LymeAid4Kids—grants for young Lyme patients (up to age 21).
Ticked Off Foundation—financial grants for Lyme patients over age 26.
Ride-out Lyme–financial grants for Lyme patients over age 26.
Outside of the United States:
Canadian Lyme Disease Foundation
LymeHope (Canada)
LYRI (Mexico)
Lyme Disease Action (UK)
Lyme Disease Association of Australia
Karl McManus Foundation (Australia)
Association Luxembourgeoise Borréliose de Lyme (Luxembourg)
Onlyme-aktion.org (Germany)
Lymevereniging (Netherlands)
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .
