TOUCHED BY LYME: Resources to help you hit the ground running

Dorothy Leland avatar

Dorothy Kupcha Leland

27 SEP 2018

When you are first learning about Lyme disease, it can be hard to know which way to turn. Here are some links to get you started.

General information

www.lymedisease.org  LymeDisease.org gives info about ticks, Lyme disease, co-infections, prevention, risk maps, downloadable brochures, blogs, news and events. If you are wondering if you might have Lyme disease, see our symptom checklist, for a printable PDF you can share with your healthcare provider.

Looking for a Lyme-literate doctor? See our physician directory here.

In addition to its website, LymeDisease.org also publishes a quarterly digital 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 groupsSign up for our free email newsletters.

MyLymeData is LymeDisease.org’s survey tool that tracks patient progress over time. It allows people to quickly and privately pool information about their Lyme disease 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.

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 

Gestational Lyme disease

Lymeparents online 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).

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

New England PANS/PANDAS Association

PANDAS Network

ACN Latitudes

Moleculera Labs

Ticks

How to protect yourself from ticks

What do you do if you get a tick bite?

TickEncounter Resource Center—University of Rhode Island

Tick testing—There are various places to get ticks tested. Here’s one.

Other Lyme-related symptoms & issues

Lyme carditis and heart block

Lyme disease and cognitive impairments

Gastrointestinal manifestations of Lyme.

Psychiatric manifestations of Lyme.

Lyme and multiple sclerosis 

Lyme and Morgellons

Lyme and allodynia 

Medical marijuana and Lyme disease 

Mold

Lyme and mold 

Survivingmold.com

Dealing with Lyme disease and mold illness at the same time

How to donate blood and tissue for Lyme research

Lyme Disease Biobank

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.

CAPC  The Companion Animal Parasite Council has comprehensive information about how to protect your pets from ticks and other parasites.

Books

Lyme: The First Epidemic of Climate Changeby 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.

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 (book) by Sandra Berenbaum and Dorothy Kupcha Leland.

Film and Video

Under Our Skin, award-winning Lyme documentary film.

Under Our Skin 2: Emergence (sequel)

An archive of Lyme-related news coverage from Fox5NY

Financial assistance:

LymeTAP.com–Lyme Testing Access Program. Financial assistance for Lyme diagnostic testing. (US residents only.)

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.

Outside of the United States:

Canadian Lyme Disease Foundation

LymeHope (Canada)

Lyme Disease Action (UK)

LymeDiseaseUK

Lyme Disease Association of Australia

Karl McManus Foundation (Australia)

France Lyme

Tick Talk Ireland

Lyme Poland

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 .

Related Posts:

  1. TOUCHED BY LYME: Financial assistance for your child with Lyme 
  2. TOUCHED BY LYME: New source of financial aid for Lyme patients 
  3. TOUCHED BY LYME: A quick introduction to Lyme disease 
  4. TOUCHED BY LYME: Need a crash course in Lyme disease? Start here. 

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