Lyme Disease Risk Has Increased Because Of Climate Change
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Whether you believe climate change is caused by humans or not, climate change and its impacts are happening. Most obviously, extreme weather events are taking place with regularity. The impacts of droughts, hurricanes, record temperatures, floods, coastal erosion from storms, wildfires, and more, are active and measurable. The damage caused by these weather events is physical and impacts everyone to some degree, because there are problems such as property damage, disrupted economic activity, injuries, and even fatalities. The estimated cost of climate change impacts runs into the trillions of dollars.
Unfortunately, climate change impacts don’t stop with physical damage and economic disruptions. They can also result in increased cases of some diseases. One example is Lyme Disease. In the US, it was first identified in about 1975 or so in Connecticut with a small cluster of infected people. The estimated number of US yearly diagnosed and treated cases is now well over 400,000. This number is quite different from the reported cases, which number in the tens of thousands per year. The larger number includes cases based on ‘clinical suspicion’ which may or may not be actual Lyme Disease cases.
The CDC says climate change is increasing Lyme Disease risk. Longer, warmer summers and shorter, milder winters mean tick season is extended, so there is more tick activity and therefore more opportunities to bite humans and infect them. Fortunately, Lyme Disease can be cured with antibiotics if it is identified and diagnosed early on. If it is not caught and treated early, there can be serious health complications because the infection can spread to other parts of the body. Some of these complications are brain problems, heart problems, eye problems, brain and spinal cord inflammation, and nerve damage. In total, the economic burden of US Lyme Disease could be almost $1 billion per year.
United States Senator Richard Blumenthal, (D-Conn.) provided a statement to CleanTechnica.
“Lyme is a scourge — we know it in Connecticut where it has plagued countless people, in the northeast, and increasingly across the country. The number of ticks and the types of ticks are increasing, as are the number of people who suffer from these infectious diseases. I’m going to continue my commitment to seeking more funding for prevention, treatment, diagnosis, and surveillance. Reporting is not what it should be. Diagnosis is still haphazard, particularly for young people, treatment is still lagging, and surveillance, the actual reporting of the disease, is unreliable simply because states don’t collect the data as they should. It is a silent epidemic — invisible and in plain sight — that we need to address with the urgency and passion that is felt by parents and others who have seen it and experienced it firsthand.”
Photographer and filmmaker Lindsay Keys, who lives with Lyme Disease, answered some questions about her experiences with it and her advocacy work.
How did you get Lyme disease, and where did it happen?
Some people become ill following one tick bite. For others, it’s an accumulation of bites over the course of their lives and exposure to multiple tick-borne pathogens. I grew up in rural, upstate New York and rarely heard about Lyme until I developed a bullseye rash at age 15. A rash does not always appear, so this saved me. My pediatrician promptly treated me, even with a negative test, as he knew the tests were unreliable. I went to college in Connecticut, and at age 21, new symptoms appeared, and doctors couldn’t identify what was wrong. They prescribed antibiotics, painkillers, and steroids, which left me feeling better, but the root cause was unaddressed. At age 24, while working in Martha’s Vineyard, I developed flu-like symptoms, then arthritic and neurological symptoms. I struggled to get diagnosed and treated, even though the vineyard is infested with ticks. Ultimately, I was diagnosed with chronic Lyme and other tick-borne diseases at age 26. I didn’t take ticks seriously because I’d recovered from Lyme quickly in high school. Basic awareness and physician education would have changed the course of my life.
How long have you had it, and was it misdiagnosed initially?
Without accurate diagnostics, it is hard to pinpoint exactly when these tick-borne illnesses first began. I’ve likely been infected for decades, with periods of having it under control, then relapse and reinfection. In college, doctors thought maybe I had cancer but couldn’t diagnose it. At other points in my life, they mentioned various autoimmune diseases but weren’t convinced. I was treated with medications that alleviated my symptoms but did not address the root cause. In 2015, when I was 26 years old, my symptoms were consistent with dementia, schizophrenia, and multiple sclerosis, but doctors couldn’t diagnose me with any of those conditions. I suggested Lyme, and no one wanted to discuss it because the standard antibody tests were negative. Most people with Lyme are initially diagnosed with something else unless they find their way to the rare doctor who is properly educated.
What treatments are available if it is diagnosed later?
I was initially treated with the standard, short course of antibiotics, but my symptoms resurfaced and then worsened a year later. My mom insisted I see a “Lyme-literate” specialist who practices outside very narrow Lyme disease diagnosis and treatment guidelines. For people who have been untreated for months or years, the treatment can last just as long. I was surprised to learn Lyme disease specialists do not accept insurance because of the time they spend with patients and the complexity of the protocols they prescribe. Ultimately, I had no choice but to see a specialist, which saved my life and drained my bank account. For chronically ill patients, treatments vary from long-term, pulsing antibiotic regimens and herbal regimens to experimental treatments like biomagnetic therapy, bee venom therapy, hyperbaric oxygen therapy, and more. It’s all out-of-pocket. When you’re that sick, you’ll try anything.
Your health insurance didn’t cover your Lyme disease costs?
Health insurance didn’t cover my costs for a proper diagnosis and treatment of Lyme and tick-borne disease. Patient-centered research and clinical trials have been neglected by our health agencies — leaving the nature of these illnesses open for debate and treatments for chronic Lyme “unproven.” Insurers leverage this lack of research and understanding to deny coverage for long-term care. Philanthropic foundations are funding cutting-edge, peer-reviewed research that proves the Lyme bacteria can survive antibiotics, yet mainstream medicine refuses to recognize the realities of chronic Lyme, leaving millions without care. Families incur medical debt, declare bankruptcy, and, in some cases, lose their homes because of a tick bite. Organizations like LymeLight Foundation give treatment grants to children and young people with Lyme who otherwise would not receive care and face a lifetime of illness and disability.
As an advocate, what do you do to help?
Helping others became my lifeline. Co-directing The Quiet Epidemic allowed me to shine a light on the devastating realities of Lyme disease so that others wouldn’t feel as confused and alone as I did upon first getting diagnosed. Even better, I thought it could help people get diagnosed and treated sooner. Beyond filmmaking, I work to educate the public, validate other sufferers, and advocate for legislative action. Earlier this year, I joined actor Christopher Meloni and artist Ally Hilfiger on Capitol Hill to urge Congress to address the Lyme epidemic. These efforts culminated in an expert panel and congressional screening our team hosted with Senator Richard Blumenthal on Capitol Hill, which received bipartisan support and strong attendance.
What is your film about, and where can people see it?
The Quiet Epidemic reveals the hidden truths of Lyme disease. The documentary delves into the science, history, and controversy surrounding Lyme, which empowers others to share their stories and call for change. My co-director and I wanted to strike a balance between the real, human experience of having the illness with a more investigative angle, which reveals decades of decisions that led us to this point. The film shows an urgent need for new diagnostics, improved treatments, and healthcare policy reforms while highlighting the resilience of those living with Lyme. Since its release, the documentary has sparked conversations globally and built a movement to end this “quiet epidemic” that impacts millions. Viewers share stories of disability, loss, and, eventually, hope. The community is feeling empowered because the truth is finally getting out and emerging science is on our side — which means we may be able to finally solve this. It is available on streaming services and DVD.
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