Frequently Asked Questions
-
Generation Lyme Meet-Ups are free virtual support groups for people impacted by Lyme disease and other tick-borne diseases.
Join a Meet-Up→ -
Generation Lyme Meet-Ups are open to everyone affected by Lyme disease and other tick-borne diseases, including patients, undiagnosed people, and supporters of all ages and backgrounds worldwide.
Join a Meet-Up→ -
You are welcome to join a Meet-Up if you haven’t been diagnosed with a tick-borne disease. Meet-Ups are helpful spaces to learn from other people’s experiences in a way that can inform and validate your own. They can also help you find resources as you seek answers about your health.
-
Yes. Supporters are welcome at Generation Lyme Meet-Ups. We also have Meet-Ups specifically for supporters, including our Supporters Meet-Up and Parents Meet-Up. We understand that caregivers and loved ones have unique experiences and need support, too.
View our Resources for Supporters→ -
You are welcome to come to a Meet-Up and just listen. There’s no pressure to talk or turn on your camera. There’s a space for you at Gen Lyme:
If you have Lyme disease or any co-infections
If you’re undiagnosed and still seeking answers
If you’re feeling shy or on the fence about joining a call and just want to listen
If you want to talk a lot
If you’re a supporter (friend, family member, partner, colleague, etc.)
If Lyme or tick-borne disease has impacted your life in any way
-
Monthly topics exist to help the community organize thoughts and shares in Meet-Ups and online throughout the month, but they aren’t meant to be limiting. You are always welcome to talk about whatever is on your mind. If you need to talk about something specific or want to use the monthly topic as a starting point, that’s okay. More than anything, we want you at Meet-Ups!
-
At Generation Lyme, a safe space means a community where people can connect and share their experiences without judgment, discrimination, harassment, or promotion. We work to make everyone feel welcome, respected, and supported.
We cannot predict or control how our community members will feel day to day, but we can promise to do our best to create a space where they can come to connect and share what’s going on in their lives without judgment.Generation Lyme’s Community Guidelines explain the expectations and policies that help keep our community welcoming, supportive, and safe.
-
Generation Lyme's Community Guidelines outline the expectations and policies that help keep our community welcoming, supportive, and safe.
-
Our Resources for Supporters include tips on how to help, how to navigate complex situations and relationships, details about Meet-Ups specifically tailored to you, helpful videos, blogs, and more.
View Our Resources for Supporters→ -
Generation Lyme fills a critical gap for people impacted by Lyme disease and other tick-borne diseases. We fully support efforts across the tick-borne disease field toward better diagnostics, treatments, access to care, and cures. But people are living with these conditions today, and they need community, connection, and support right now.
Generation Lyme focuses on what happens to the person while all of that is being figured out: friendships and relationships, isolation, being believed, identity, school and work, mental health and emotional wellbeing, hope, and having somewhere to show up without explaining the whole backstory.
Generation Lyme exists to make sure people have somewhere to connect with others who understand while long-term solutions continue to advance.
-
For the same reason that any other nonprofit and foundation wouldn’t brand themselves around the thing that harmed the community they’re fighting for.
-
It’s a community saying from when we got started. The Gen Lyme community is full of Cool Dudes™️ — now you’re in on it too!
FAQ About Generation Lyme & Meet-Ups
-
Finding a medical provider who is knowledgeable about Lyme disease and other tick-borne diseases can be challenging. Generation Lyme maintains a Find a Doctor resource with provider search tools from organizations specializing in tick-borne diseases.
-
Through years of patient-led community programs, Generation Lyme has consistently heard from people affected by tick-borne diseases about isolation, lost friendships, changing relationships, difficulty being understood, challenges with communication, and the emotional toll of real physical and financial burdens. Community members also share experiences with anxiety, depression, sleep difficulties, and neuropsychiatric symptoms—and the importance of connecting with people who have been through similar experiences.
Research also points to important connections between Lyme disease, chronic illness, mental health, and quality of life. These experiences are complex: mental and emotional wellbeing can be affected by the physical burden of illness, isolation, changes in daily life, and, in some cases, symptoms associated with illness itself. Research in this area continues to develop.
Mental health is only one part of wellbeing, and someone doesn’t need to be experiencing a mental health condition to benefit from connection and support. Having people who understand, opportunities to build relationships, and a sense of belonging can matter throughout the experience of illness.
Join a Meet-Up→
Sources: -
There are many organizations providing education about Lyme disease and other tick-borne diseases. Generation Lyme recommends using reputable sources that clearly identify the medical or scientific basis for their information and distinguish established evidence from areas where research and medical opinion continue to evolve.
-
If you're new to Lyme disease, start with an overview of how Lyme is transmitted, common signs and symptoms, diagnosis, treatment, and prevention. We've gathered educational resources to help you understand the basics and explore topics in more depth.
Learn about Lyme & Other Tick-Borne Diseases→ -
Knowledge and experience with Lyme disease and other tick-borne diseases vary widely among healthcare providers. Diagnosis and treatment can be complicated by limitations in testing, overlapping symptoms, differences in clinical experience, and ongoing scientific and medical debate around some aspects of tick-borne diseases.
If you feel your concerns aren't being adequately addressed, we have compiled resources from trusted organizations to help you look for a provider with more experience in tick-borne diseases. -
Lyme disease is an infectious disease caused by bacteria in the Borrelia genus and transmitted to humans through the bite of infected ticks. It can affect multiple systems of the body, and symptoms and presentation can vary from person to person.
-
Co-infections are infections that occur alongside another infection. In the context of Lyme disease, the term commonly refers to other infections that may be transmitted by ticks, such as babesiosis or anaplasmosis.
-
Infection-associated chronic conditions (IACCs) are considered long-term problems that begin after an infection.
-
Supporting someone with Lyme disease or another tick-borne disease starts with listening, believing their experience, learning about what they're going through, and asking what kind of support they need. Generation Lyme's Resources for Supporters offer practical guidance, Meet-Ups, videos, articles, and other tools for family members, partners, friends, and caregivers.
-
Generation Lyme maintains a list of nonprofit organizations that offer financial assistance programs for people affected by Lyme disease and other tick-borne diseases. Generation Lyme is not affiliated with these programs and does not participate in grant decisions or personal fundraising efforts.
-
Generation Lyme maintains a list of housing and social service resources for people affected by Lyme disease and other tick-borne diseases who are experiencing housing insecurity or need additional support. Generation Lyme does not provide housing assistance directly and is not affiliated with the programs listed.