Generation Lyme

Generation Lyme 501(c)3 nonprofit community empowering patients and supporters facing tick-borne disease.

According to ABC News, ER visits from tick bites have climbed to the highest point in years.These stats aren’t just numb...
04/22/2026

According to ABC News, ER visits from tick bites have climbed to the highest point in years.

These stats aren’t just numbers — they reflect real people, real worry, and real experiences. If this resonates, you’re not alone.

Let’s keep talking about what Lyme disease really looks like.

Some days the fog feels light… and other days it’s the whole weather forecast.Go vote in our story poll to let us know w...
04/21/2026

Some days the fog feels light… and other days it’s the whole weather forecast.

Go vote in our story poll to let us know where you're at. Feel free to also re-share one of these slides to your story to let others know just how you're feeling today.

No pressure - just a gentle check-in with yourself and your community.

04/16/2026

What’s one thing you are doing for yourself today?

Share it with us in the comments and remember—we are all figuring this out together 🤝💙

“When I was diagnosed with Lyme disease, I had no idea just how much it would impact my life. The disease is more than j...
04/15/2026

“When I was diagnosed with Lyme disease, I had no idea just how much it would impact my life. The disease is more than just fatigue or aches—it’s neurological symptoms, co-infections that can leave you sicker than Lyme itself, and the very real fear that you could lose mobility. I faced almost being paralyzed, and while I can walk now, I haven’t fully regained my power walk.

Lyme disease is debilitating, confusing, and isolating—but I want people to know there is help out there. Part of my journey has been learning to be kind to myself, to go easy on myself, and to stop beating myself up for what happened. You can’t control the disease, but you can control how you advocate for yourself and how you move forward.

Since my diagnosis, I’ve become deeply committed to giving back. I am an ambassador for Global Lyme Alliance and an advocate for Center for Lyme Action. I participate in advocacy days, fighting to ensure that Lyme disease treatments and care are funded by insurance—so people aren’t left paying huge out-of-pocket costs while staying sick. My goal is simple: help people get the care they need, spread awareness, and remind others to treat themselves with compassion along the way.

Living with Lyme isn’t easy, but we can find strength in community, advocacy, and the small self-care practices that restore us. For anyone out there facing this journey: be kind to yourself, seek support, and never underestimate the power of giving back.” – Kristen, Lyme Warrior

Anyone can be in a crowd...But real community is built in the way we respond, the way we listen, and the way we hold spa...
04/11/2026

Anyone can be in a crowd...

But real community is built in the way we respond, the way we listen, and the way we hold space for each other — especially on the hard days.

Showing up is powerful.
Showing up with empathy is everything.

(2/2) The decade that followed was anything but simple. Healing from Lyme is rarely a straight line. There were seasons ...
04/09/2026

(2/2) The decade that followed was anything but simple. Healing from Lyme is rarely a straight line. There were seasons of progress and seasons of regression. I navigated new challenges — mold exposure, gut health imbalances, and the unpredictable nature of a disease that constantly evolves. I lived in three different states, learning to adapt, rebuild, and begin again more times than I can count. There were moments of deep frustration, grief for the life I once had, and anger at a body that seemed to betray me. But there were also quiet victories — the kind only someone who has fought chronic illness truly understands.

Then this past year, something changed again. The anger that had lived in my body for so long finally softened, replaced by a sense of clarity about the future I wanted to build. Instead of focusing on what Lyme had taken, I began focusing on what I could reclaim.

So I signed up for my first half marathon — not just as a race, but as a declaration that strength can be rebuilt. And I launched a business born from my own journey, dedicated to supporting other chronic illness warriors and their caregivers as they navigate the complex path of healing.

Because if Lyme has taught me anything, it’s this: healing isn’t about returning to who you were before. It’s about discovering the strength to become someone new.” – Kat, Healing Non-Linearly and Rebuilding Strength

If you missed Part 1 of Kat's story, make sure to check our feed for the previous post.

Today is World Health Day, and while the world celebrates progress, so many in the Lyme community are still fighting to ...
04/07/2026

Today is World Health Day, and while the world celebrates progress, so many in the Lyme community are still fighting to be seen and supported.

Help us raise awareness of Lyme disease by sharing this post. Together, we can keep pushing for recognition, research, and a future where no one has to keep waiting.

(1/2) “At 15 years old, my life changed almost overnight. I went from a high-functioning student and multiple-sport athl...
04/06/2026

(1/2) “At 15 years old, my life changed almost overnight. I went from a high-functioning student and multiple-sport athlete to someone who could barely get through a day. School became impossible. The sports that once defined me disappeared from my life. Even simple social situations felt overwhelming as my world slowly became smaller and smaller. And it all started with a simple tremor in my hand.

For two years, my family and I searched for answers — moving from specialist to specialist, enduring test after test, hoping someone could explain what was happening to my body.

At 17, I was finally diagnosed with Lyme disease and Bartonella. The next two years were filled with aggressive treatments — multiple antibiotics at once — and while they were meant to help, they came with their own consequences, including severe candidiasis and a body pushed far beyond its limits.

Still, I fought to reclaim pieces of my life. Slowly, patiently, I rebuilt my strength. That determination led me back to the field — earning a spot on my college’s women’s soccer team and becoming a starting player my freshman year. For a moment, it felt like I had found my way back.

But at 19, everything came crashing down again when years of antibiotic treatment led to severe toxicity. I found myself sitting in the office of the doctor who thankfully still cares for me today, desperate for answers once more. At my second appointment, after beginning a more holistic path forward, he paused, looked at me, and said simply, “It’s nice to meet you.”

In that moment, something shifted. For the first time in years, I felt like myself again — like the real version of me had finally come back to the surface.” – Kat, Healing Non-Linearly and Rebuilding Strength

Stay tuned for part two of Kat's story.

April’s topic of the month is: DignityDignity can be holding it together when a doctor dismisses your symptoms again.It ...
04/03/2026

April’s topic of the month is: Dignity

Dignity can be holding it together when a doctor dismisses your symptoms again.

It can be admitting you can’t make it to something you were really looking forward to.

It can be asking for help when you hate that you need it.

It can be choosing not to explain yourself for the hundredth time to someone who just doesn’t get it.

Whatever dignity means to you this month, our community is here to hold space for it — and for you.

RSVP for our next Meet-Up at genlyme.org/meetups

“I grew up thinking it was normal to hurt. GI issues. Migraines. Joint pain. Anxiety. Depression. The symptoms stacked u...
03/31/2026

“I grew up thinking it was normal to hurt. GI issues. Migraines. Joint pain. Anxiety. Depression. The symptoms stacked up—but labs were always “normal.” I started questioning my own body and even my mind.

In 2024, a skydiving accident broke my femur—and whatever was holding me together. The fracture wouldn’t heal. Surgeries piled up, and my health spiraled. During one severe panic attack, I felt overwhelmed and frightened by how dark my thoughts became. That was a turning point.

I kept pushing for answers. In summer 2025, after sharing my history of tick bites, testing was finally ordered. It came back positive for Lyme.

Relief and grief collided. Lyme didn’t suddenly make me sick—it explained years of being dismissed.

I’m still actively treating with Western and functional medicine, antibiotics and herbals, therapy, nutrition changes, and modified movement. Healing hasn’t been linear, and I’m still navigating orthopedic damage alongside Lyme treatment.

Lyme is teaching me resilience, patience, and how to advocate fiercely for my body. Community matters—but no one will fight for your health harder than you.

I’m still healing. Still learning. Still here.” – Samantha,

Living with Lyme asks so much of a person, and Ryan Sutter’s latest interview puts words to some of the hardest parts — ...
03/29/2026

Living with Lyme asks so much of a person, and Ryan Sutter’s latest interview puts words to some of the hardest parts — the exhaustion, the mental toll, and the quiet fears so many in our community know too well.

His honesty is a reminder that these experiences aren’t “in your head,” and you’re never the only one feeling this way. We see you. We get it. And you’re part of a community that understands the weight behind every “I’m fine.”

Want to read the full interview? Head to our stories — the link is waiting there for you.

We are wrapping up our World Poetry Week with a poem by Anonymous. Make sure you swipe over to read the full poem!We had...
03/28/2026

We are wrapping up our World Poetry Week with a poem by Anonymous. Make sure you swipe over to read the full poem!

We had so much fun sharing poems from our community. A huge thank you to our brave poets and everyone who shared the poems in their stories.

As before, make sure to leave a comment on this one and let our poet know if you resonated with their words.

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