Lyme Resources
A growing collection of resources, books, websites, and tools that may help you learn more, ask better questions, and feel less alone while navigating Lyme.
Under Our Skin documentary from 2008 that was the A-ha! moment for our family and pivitol in our recovery
LymeDisease.org
Patient-centered Lyme education, advocacy, MyLymeData, articles, patient stories, and resources for navigating the Lyme world.
ILADS — International Lyme and Associated Diseases Society
Provider education, conferences, professional training, and a provider search for people looking for Lyme-literate clinicians. ILADS describes its mission as educating healthcare professionals about diagnosis and treatment of tick-borne diseases.
Global Lyme Alliance
Patient education, peer-to-peer mentor support, symptom tracking tools, financial support resource lists, and research updates.
Project Lyme
Clear, easy-to-navigate resources on diagnosis, co-infections, treatment considerations, self-care, and mental health support.
Bay Area Lyme Foundation
Research-focused nonprofit supporting diagnostics, prevention, and Lyme/tick-borne disease research.
Generation Lyme
Community, support groups, podcast, education, and young-adult friendly resources.
NatCapLyme
Education, support, advocacy, and community resources through the National Capital Lyme Disease Association.
CanLyme — Canadian Lyme Disease Foundation
Canadian Lyme education, advocacy, research updates, and patient resources.
Center for Lyme Action
Policy and federal advocacy focused on growing funding and attention for Lyme, alpha-gal, and other tick-borne diseases.
Kids, families, and support
LivLyme Foundation
Especially relevant for families. LivLyme provides financial help for children with Lyme and also funds research for better testing, treatment, and cures.
LymeLight Foundation
Treatment grants for eligible children and young adults with Lyme disease and tick-borne illness. LymeLight says it supports children and young adults through age 25.
Children’s Lyme Disease Network
Child-focused Lyme resources, education, and support links.
Lyme grants and financial assistance
I’d put this in its own section because eligibility, funding, and application windows change.
LymeLight Foundation
Provides treatment grants for eligible children and young adults through age 25 with Lyme disease or other tick-borne illnesses.
LivLyme Foundation Grants
Provides financial help for children with Lyme, including support toward medication and doctor visits. Their site also notes research grants for better testing, treatment, and a cure.
LymeAid 4 Kids / LA4K
Financial assistance for children and young adults age 21 and younger who need Lyme disease testing and treatment. The program is now stewarded by the Colorado Tick-Borne Disease Awareness Association.
Lyme Treatment Foundation
Provides medical treatment grants for people of all ages in the U.S., Canada, and parts of Europe, including the UK and Germany, to help fund diagnostic testing and treatment for Lyme and associated tick-borne illnesses.
Lyme Test Access Program / LymeTAP
Financial assistance for initial Lyme-related lab testing for patients with demonstrated financial need.
Ticked Off Foundation
Financial assistance and treatment support for adults age 26 and older with Lyme and other tick-borne illnesses. Their site says they support people who have run out of financial means and resources needed for treatment.
NELAD Resource Foundation
Supports families dealing with Lyme and associated diseases through education, advocacy, and opportunities for financial support. Florida Lyme Disease Association’s financial assistance list describes NELAD grants of up to $3,000, with preference for Northeast/New England applicants.
Lyme Association of Greater Kansas City
Offers smaller financial assistance grants for people diagnosed with Lyme or other tick-borne illnesses and experiencing hardship. LymeDisease.org lists grants up to $500.
Sam’s Spoons Foundation
Financial assistance for people in Pennsylvania who need help paying for treatment and medical expenses. Generation Lyme includes it in its financial assistance list.
Tick ID, prevention, and testing
TickEncounter Resource Center
Good for tick identification, prevention, risk awareness, and learning what different ticks look like.
TickReport
Tick testing by mail. Their site says they identify the tick, assess feeding condition, and test for multiple pathogens, including Borrelia, Anaplasma, Babesia, and others depending on the package.
International resources
Lyme Disease UK
UK-based Lyme patient support, webinars, education, and awareness resources.
Lyme Disease Action
UK charity with public information, education, and resources on Lyme and tick-borne illness.
Lyme Resource Centre
UK-based charity focused on public and healthcare professional education about ticks and Lyme disease.
10 Things That Helped Me Navigate Lyme
1. Start cleaning up your diet
Focus on adding more anti-inflammatory foods and paying attention to how different foods make you feel. You do not have to change everything overnight. Start with small, steady steps.
2. Reduce toxic products in your home
Look at the cleaning products, personal care items, and fragrances you use every day. Swapping out harsh chemicals for gentler options can be one way to support a healthier home environment.
3. Build your wellness practitioner crew
Lyme can be complicated, and it helps to have a team. This may include medical providers, specialists, bodyworkers, counselors, nutrition support, or other trusted practitioners who understand chronic illness and help you feel supported.
4. Get moving in ways your body can handle
Movement can help support circulation, lymph flow, mood, and strength — but it needs to match where your body is right now. Gentle walks, stretching, yoga, rebounding, or light strength work may be good places to start.
5. Unwind and lower stress where you can
Stress can make symptoms feel heavier. Build in small daily ways to calm your nervous system, whether that is breathing, prayer, time outside, music, rest, journaling, or quiet time away from screens.
6. Detox your schedule, not just your body
Sometimes healing means stepping back from too many obligations, draining relationships, overcommitment, and constant pressure. Protecting your energy is not selfish. It is part of getting through this.
7. Build resiliency
Lyme can wear you down physically, mentally, and emotionally. Look for tools that help you stay steady: mindset work, faith, counseling, support groups, routines, gratitude, humor, and honest connection with people who get it. If you’re traveling with Lyme check out this article.
8. Choose supplements carefully
Not all supplements are created equal, and more is not always better. Use high-quality products, pay attention to how your body responds, and work with a knowledgeable practitioner when possible.
9. Track patterns
Keep notes on symptoms, food, sleep, stress, movement, weather, treatments, and flares. Over time, patterns can help you understand what supports your body and what may be triggering setbacks.
10. Find your people
Chronic illness can be isolating. Whether it is one trusted friend, an online community, a local support group, or another Lyme family, connection matters. You do not have to walk through this alone.
Books You’ve Gotta Read
These books include a mix of Lyme-specific resources, children-and-family support, integrative medicine, biological medicine, herbal perspectives, and historical/investigative books. Not every book is strictly about Lyme disease, but each one helped shape how I think about chronic illness, healing, and asking better questions.
When Your Child Has Lyme Disease: A Parent’s Survival Guide
Sandra K. Berenbaum, LCSW, and Dorothy Kupcha Leland
Best for parents trying to understand the emotional, school, family, and day-to-day reality of supporting a child with Lyme.Cure Unknown: Inside the Lyme Epidemic
Pamela Weintraub
A strong big-picture book on Lyme history, patient experience, and the medical controversy around diagnosis and treatment.Conquering Lyme Disease: Science Bridges the Great Divide
Brian Fallon, MD, and Jennifer Sotsky, MD
A more clinical/science-oriented book that tries to explain why Lyme and persistent symptoms have become such a divided medical issue.Recovery from Lyme Disease
Daniel A. Kinderlehrer, MD
A detailed integrative medicine book for people trying to understand Lyme, co-infections, immune issues, and long-term recovery.Why Can’t I Get Better?
Richard Horowitz, MD
A dense but helpful book for understanding chronic Lyme, overlapping infections, inflammation, and why recovery can feel complicated.Healing Lyme
Stephen Harrod Buhner
A well-known herbal and natural-support book in the Lyme world. I would list this under “herbal and whole-body support,” not as a replacement for medical care.The Swiss Secret to Optimal Health: Dr. Rau’s Diet for Whole Body Healing
Thomas Rau, MD, with Susan Wyler
This is the Dr. Rau book you were thinking of. It is not only a Lyme book, but it fits well in a Lyme resource list because it focuses on diet, detoxification, biological medicine, and whole-body healing.Bioregulatory Medicine: An Innovative Holistic Approach to Self-Healing
Dickson Thom, DDS, ND; James Odell, OMD, ND; Jeoffrey Drobot, NMD; Frank Pleus, MD; Jess Higgins Kelley, MNT
This would be the strongest Dr. Dickson Thom-related addition. It is not just Lyme-specific, but the publisher description specifically places Lyme disease among the chronic conditions the book’s bioregulatory approach may be relevant to.Bitten: The Secret History of Lyme Disease and Biological Weapons
Kris Newby
This is the investigative Lyme/bioweapons book. I would include it with a note that it raises controversial historical questions and should be read as investigative journalism, not medical guidance.Operation Paperclip: The Secret Intelligence Program That Brought Nazi Scientists to America
Annie Jacobsen
This is not a Lyme book, but it belongs in the “history and context” category if you want to understand the broader post-WWII government science and military research history that people often connect to the Lyme controversy.
For Dr. Thom additional reading and please watch his video on what you can do to kick start healing today:
Begin Again: Trauma, Disease, and Healing with the Brain Protocol and Biological Medicine
Dickson Thom, DDS, ND
This looks like his newer book focused on chronic disease, trauma, the brain protocol, and biological medicine. I’d put it in a bonus section rather than the main Lyme list unless you want the page to lean more strongly toward biological medicine.
rEADY FOR CHANGE?
Are you needing support, backup, someone who can be there with you in Lyme Land? Let's brainstorm ideas for wellness, diet modifications, emotional health, and basics like "How do I remember to take 30 different supplements?" I can also provide support when it comes to advocating for yourself at the doctors, and with your health insurance company! We can Skype, FaceTime, or meet in person if you live near the farm. (Some Lymies just aren't able to leave their bedroom and I can come visit bearing lemon water with Pinella.) This coaching is all about YOU and what works for YOU. It is fully customizable to best meet your needs.