Lyme Disease and Climate Change: A Growing Crisis
Why we need to be talking about ticks!
At a time when climate change is accelerating global health crises, Lyme disease stands at a critical intersection of public health and environmental urgency. The rise in tick-borne illnesses is not just a medical concern—it’s a symptom of a larger ecological imbalance that demands systemic change.
Lindsay Keys, co-director of the award-winning documentary The Quiet Epidemic, has been at the forefront of this fight. She uses storytelling and advocacy to elevate Lyme disease as both a public health crisis and a climate issue. Through her activism and lived experience as a Lyme patient, Lindsay is hoping to bring new awareness to this growing concern.
As climate change drives the expansion of tick habitats, Lyme disease cases have skyrocketed, with 476,000 new infections reported each year. This crisis disproportionately impacts children, who make up 25% of new cases.
But how does climate change factor into the spread of Lyme disease? And what can be done to drive real solutions? Below, we dive into the key questions and answers shaping the conversation. This is our interview with Lindsay Keys.
Why did you decide to make the film The Quiet Epidemic?
As a young artist and filmmaker, I never expected to spend a decade on the frontlines of a controversial epidemic. My journey began when my mom’s health deteriorated from what was later diagnosed as Lyme and tick-borne disease. I previously thought Lyme was easily treatable until I became sick myself and the standard course of antibiotics didn’t work. By age 26, I had been sick for years and developed symptoms like dementia, schizophrenia, and multiple sclerosis.
To save my life, I had to exit mainstream medicine and find a 'Lyme-literate' specialist, which is when I met my co-director, Winslow Crane-Murdoch. A nurse practitioner connected us. He’d followed a similar path and we wanted to understand why it was so challenging to get a diagnosis for a disease that impacts more people annually than HIV and breast cancer combined. We also wanted to understand why our doctor wasn’t allowed to participate in the insurance model. All expenses were out-of-pocket.
“We wanted to understand why it was so challenging to get a diagnosis for a disease that impacts more people annually than HIV and breast cancer combined.”
Ultimately, we wanted other people to understand what is at stake if they are bitten by a tick. For those who are suffering, we hoped the film might help their loved ones understand why this disease is controversial, and that they need support—especially because that support does not exist within the medical system.
Considering Lyme is something that could affect everyone, why aren't we talking about it more?
At this point, everyone knows someone who has experienced debilitating symptoms of Lyme disease. Even still, our public health agencies have failed to raise proper awareness, research has been grossly underfunded, and there is a serious lack of physician education and training. There is a long, well-documented history of conflicts of interest within the medical and scientific community surrounding Lyme disease—it is one of the most complex and heavily patented bacteria in the world, and there are huge profits at stake.
Another challenge is our lack of understanding of the true scope of the problem. The Centers for Disease Control estimates 476,000 people are diagnosed annually with Lyme disease, but this number does not account for other tick-borne diseases, and it does not account for the unreliability of the Lyme disease diagnostic test.
If we truly knew how many people were impacted by Lyme and tick-borne diseases, I think everyone would be talking about it. Our public health agencies would be forced to talk about it at that point.
What are some hidden long-term effects of Lyme that people may not be aware of? Why should we be concerned?
There is solid science coming out of top institutions—like Dr. Monica Embers’ work at Tulane University—that shows that Lyme disease bacteria can impact virtually every organ and system of the body. It can go into the heart, brain, joints, the central nervous system, and more. Lyme disease is caused by a spirochete, which is the same type of organism that causes syphilis. We know what syphilis can do—from causing severe mental illness to infecting babies via in utero transmission. Syphilis was once referred to as “the great imitator” and Lyme disease has been referred to as “the new great imitator.” Many people with Lyme disease are diagnosed with conditions such as multiple sclerosis, ALS, ME/CFS, Alzheimer’s, Parkinson’s, heart disease, and more.
We need an accurate test to know who truly has Lyme disease and who does not, so they can receive proper treatment. Without access to an accurate test or a cure for all stages of the illness, everyone should be concerned. A negative Lyme disease test does not mean you don’t have Lyme disease or other tick-borne pathogens, yet people are told this following routine bloodwork. Doctors are not equipped to navigate this epidemic of Lyme and tick-borne diseases.
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What about climate change?
What role does climate change play in the increased risk of Lyme?
An award-winning investigative journalist named Mary Beth Pfeiffer, who is featured in The Quiet Epidemic, wrote an excellent book on this topic called Lyme: The First Epidemic of Climate Change. With warming temperatures and warmer winters, ticks are not dying as they once did and their populations are proliferating faster than ever before. A single tick can lay thousands of eggs. Also due to warming temperatures, ticks are moving further north into places where they previously could not thrive—where there is less awareness.
Canada, for example, is now experiencing high rates of Lyme and tick-borne diseases. Our changing climate is also impacting the migratory patterns of tick hosts—including birds—which means ticks are traveling to new parts of the United States and around the world. Simple awareness can save lives. Wear tick repellent and light-colored clothing while outdoors, perform regular tick checks, if you find an attached tick, send it in to be tested for pathogens, and take the time to check your animals, too—because they can bring ticks indoors.
The week that Trump took office, 30 various Lyme organizations sent an open letter to Trump urging the new administration to prioritize research and prevention. Do you feel optimistic about gaining that support and if so, why?
Our team at The Quiet Epidemic and leading Lyme disease foundations had meetings and hosted events on Capitol Hill last year with bipartisan support. As someone who spent years advocating for Lyme disease awareness and policy change, I want to emphasize that this issue transcends politics. A tick doesn’t care if you’re a Republican, a Democrat, an Independent, or anything else for that matter. One of the most vulnerable populations that are impacted by Lyme and tick-borne disease is children—making up an estimated 25% of new cases. This threat and our cause do not go away depending on the political party of the current administration, and that’s been the case for 50 years now since Lyme disease was first recognized in the U.S. in 1975.
President Trump’s first term made strides in addressing Lyme and tick-borne diseases, and the Lyme community—including Democrats, Republicans and Indepdendents—hopes there is potential to build on that progress. 2025 is a big year for Lyme disease, with critical upcoming legislation and initiatives. With the expected appointment of RFK Jr. as Secretary of Health and Human Services, we have a chance to push for increased recognition of Lyme disease as a critical public health issue. During RFK Jr.’s recent hearings, Senator Susan Collins’ named Lyme disease as one of her biggest concerns and asked for his support. He shared that he and his family have been deeply impacted by Lyme and tick-borne diseases, and vowed to prioritize solving this epidemic through the development of diagnostics, therapeutics, and vaccines.
What can people do to help?
For 50 years, the burden of solving this public health crisis has fallen on those who are suffering—whether they are sick themselves, or they are caregivers of someone who is sick. There are foundations you can support—like LymeLight Foundation—that give treatment grants to children with Lyme, so they can access the life-saving diagnostics and treatments they need, none of which are covered by even the best insurance plans.
There are also foundations raising funding to conduct much-needed scientific research—like Global Lyme Alliance, Bay Area Lyme Foundation, and Project Lyme. The Lyme disease community is growing by the day, and they are advocating for you—wanting no one to suffer in the ways they have. It’s much easier to advocate before you or someone you love gets sick, so if you’ve been looking for a cause, this is an important one.
You can watch The Quiet Epidemic at home on Amazon Prime and AppleTV/iTunes, and share the film within your communities. There’s a popular saying in the Lyme disease community: “You don’t get it, until you get it”—meaning, until you or someone you love gets sick with Lyme disease. By watching the film—which you can access via www.thequietepidemic.com—you will know what is at stake, and how to advocate for yourself and your loved ones.
Lastly, support those who are suffering from Lyme and tick-borne diseases. They have been largely abandoned by the medical community that should be helping them, and even by their own friends and family who don’t understand what they’re going through. Show up for them in the ways you would anyone in your life who was battling a life-threatening illness. As we push for change and healing from the top, we can start in our own communities.
I gave up getting Lyme tests, cos doctors assumed that every negative test confirmed that I hadnt caught Lyme infection from that tick bite.
i have Lyme and bedridden