Overlooked and Under-diagnosed: Stories of Long-Haul Lyme Disease

By Brooke Stoddard, Jennifer Hoffmann, and Noah Johnston

This past summer, WNBA star Elena Delle Donne shared her twelve-year battle with Lyme disease. Elena’s story received national attention, mirroring the experiences of Lyme disease patients across the country. But the headline quickly vanished.

That’s why Project Lyme and Generation Lyme are taking it upon ourselves to spread the word about Lyme disease and express the urgency Lyme disease patients experience in their pursuit of help. Like Elena, Lyme patients often face numerous hurdles: debilitating symptoms, difficulty in receiving a diagnosis, and a complex set of treatment options.

Lyme disease is a tick-borne illness that infects roughly 476,000 Americans each year. In addition to the Lyme bacteria Borrelia burgdorferi, a tick can transmit other contagions called co-infections, many of which can cause long-term, life-altering symptoms. Lyme disease itself is challenging to diagnose, as it manifests differently over time in ways that vary from person to person. Delayed diagnosis increases the likelihood of developing a continuing illness in which the bacteria have disseminated throughout the body and caused widespread inflammation, lingering symptoms, and an infection that is difficult to eliminate.

Lyme disease in its lingering stage has accrued a confusing list of names, including Chronic Lyme, Persistent Lyme, and Post-Treatment Lyme Disease Syndrome. This assortment of titles has contributed to a widespread lack of public understanding and even outright dismissal. It has diverted attention from the real issue: People are sick, staying sick, and not getting the help they need.

Since “long-haul COVID” has entered our collective lexicon without similarly widespread backlash (though there is some), we’ll employ the term “long-haul Lyme disease” here since it accurately depicts how patients experience lingering Lyme symptoms. We hope that this terminology will help our readers better understand the illness. More broadly, we hope that the public will focus on this disease and its effect on people, rather than its name.

Just like long-haul COVID, long-haul Lyme is real, debilitating, and immensely costly. Elena, for example, divulged that she took 64 pills each day to manage her symptoms. She is not alone.

Project Lyme and Generation Lyme are committed to sharing first-hand stories of people who deal with Lyme disease daily. We share these testimonies in the hope of changing how Lyme disease is understood. Countless people across the US and abroad have gone unheard for too long. They have been called “crazy,” “attention-seeking,” and “just depressed.” Despite desperate searching, they have received no viable treatment options. A majority of long-haul Lyme patients have to pay out of pocket for nearly all of their treatment. We want this to change.

These are the everyday stories that deserve to make headlines:

Ashley from Virginia has a story of prolonged dismissal. In college, symptoms of extreme fatigue, muscle burning, and night sweats seemed to appear overnight. As Lyme disease attacked Ashley’s body, doctors echoed a refrain all-too-commonly heard by Lyme patients: “But you don’t look sick.” Instead of treating her, they diagnosed Ashley with depression. They accused her of fabricating her story for attention and interrogated her about her sexual health, suggesting that her symptoms came from a sexually transmitted disease. It took nine years for Ashley to receive a proper diagnosis.

After years of searching, Ashley finally found an infectious disease doctor who had studied Lyme disease. By then, her illness had progressed significantly and required aggressive intervention. Ashley underwent an expensive two-month protocol at a Lyme disease treatment center. It minimized but did not eliminate her symptoms. Today, Ashley is the mother of a 3-year-old daughter, Zoe, and runs a wellness consulting firm. She shared her story with Generation Lyme to help other African American women who have Lyme disease.

Alexa from New Jersey shared a harrowing experience that affected her entire family. She began to suffer incapacitating symptoms during college. Once an active cheerleader, numbness, brain fog, dizziness, nerve pain, muscle pain, and seizures left her debilitated. Doctors prescribed medications to mask her symptoms but failed to provide a real diagnosis or effective treatment.

They told Alexa’s mother, Maureen, that there was nothing wrong with her daughter. Maureen, a medical professional herself, became depressed under the strain of her daughter’s “unidentifiable” illness. Maureen began to suffer from depression as a result. Tragically, Maureen passed away from an overdose of prescription antidepressants. Eventually, Alexa found a doctor who diagnosed her with Lyme disease. She wished her mother could have been there to learn the answer to her years-long mystery. Today, Alexa is making progress, but healing remains a daily struggle. She has paid out of pocket for oral antibiotics, IVs, and supplements to restore her immune system. Alexa shared her story on Project Lyme’s Instagram in July and continues to advocate for Lyme disease patients.

Elena, Ashley, and Alexa were overlooked and under-diagnosed. They needed doctors to take them seriously, diagnose them correctly, and offer timely treatment. Despite her fame and success, the WNBA dismissed Elena’s concerns about safely resuming play as a Lyme disease patient during COVID. Ashley carried untreated pain for nearly a decade of her life. Alexa suffered an unspeakable tragedy.

Long-haul Lyme stories tend to reveal the same truths. Patients face two uphill battles: one for a correct diagnosis, the other for proper treatment. Lyme disease patients are resilient and have powerful stories to tell, but they cannot fight this battle alone. It is time to listen to them and ease their burden.

It’s time to pave a better path.

Fortunately, there is hope on the horizon. Long-haul symptoms are being taken more seriously in light of the devastating COVID-19 pandemic. Organizations and their donors are funding research to help understand and solve these problems more effectively. Long-haul patients of both COVID-19 and Lyme disease are finding each other, offering their support, and learning they’re not alone. We wish we didn’t have to say this, but there is strength and solidarity in those numbers. They amplify the call for help and the demand for change.

Our organizations are determined to be part of the solution. We invite you to join us.

To learn how to help, visit Project Lyme and Generation Lyme.

Brooke Stoddard is a Co-Founder and Board Member at both Generation Lyme and Project Lyme. Jennifer Hoffmann is a Board Member at Generation Lyme and a Program Associate at Project Lyme. Noah Johnston is the Administrative Director of Project Lyme. Project Lyme is a 501(c)3 organization based in New York City that makes mission-critical investments in Lyme disease research, advocacy, education, and awareness. Generation Lyme is a community for young people facing Lyme disease and a Project Lyme initiative. If you want to share your Lyme story, reach out to share@projectlyme.org or info@genlyme.org. If you are looking for community support on your healing journey, visit www.genlyme.org.