By Fred Diamond

Some tick-borne disease stories are almost too painful to tell. But many times, they bring hope. Which is why my book and podcast are titled “Love, Hope, Lyme” and not “Love, Loss, Lyme.”

Yet, as author Terri McCormick writes in Being Misdiagnosed, some stories are simply too important to remain untold.

That is why she chose to dedicate one of the book’s most powerful chapters to Dr. Rick Dulude, his wife Pam, their daughter Allison, and their son Alec. Their willingness to revisit the darkest chapter of their lives is rooted in a simple hope: that another family might recognize the warning signs sooner, another physician might ask one more question, and another young life might be saved.

After recently interviewing both Terri and Dr. Dulude on this week’s Love, Hope, Lyme podcast, I came away thinking less about tragedy and more about purpose. Alec’s story is heartbreaking, but what his family has done since his death offers that hope can be born from service.

Rick often says, “Alec’s spirit lives on through us.” That single sentence explains why Alec’s Place exists.

As an anesthesiologist with decades of medical experience, Rick never imagined that his own family would spend years searching for answers while his son slowly disappeared before their eyes.

A young man’s life inexplicably changes

Alec Dulude

Alec was an engineering student at Oregon State University, an accomplished athlete, an entrepreneur, an outdoor enthusiast, and someone who embraced life’s biggest challenges. Whether he was mountain biking, fly fishing, skiing, or working as a whitewater guide, Alec approached life with remarkable energy and determination.

When his health began to change, the symptoms did not initially point toward Lyme disease. Instead, the family watched as debilitating fatigue, insomnia, gastrointestinal problems, anxiety, obsessive thoughts, depression, and eventually psychosis transformed the young man they knew.

Like countless families facing unexplained neuropsychiatric illness, they sought help from specialist after specialist. Neurologists, psychiatrists, infectious disease physicians, and other experts all searched for answers, yet the underlying cause remained hidden.

Only much later did testing reveal Lyme disease and its common coinfection Bartonella.

For Rick, the realization was devastating because it came after years of suffering that might have unfolded differently had tick-borne disease been considered earlier. Appropriate treatment finally began, and there were encouraging signs that Alec was improving.

His personality began to return. He smiled again. He laughed with his family. He planned a ski trip with his mother, sister, and cousins. For a brief time, they caught a glimpse of the son they had feared was gone forever.

Tragically, Alec died by suicide in April 2023 before his recovery could continue.

For many parents, such a loss would understandably mark the end of the story. For Rick and Pam Dulude, it became the beginning of a new mission.

Sharing their story publicly

Rather than withdrawing from the world, they made the courageous decision to tell Alec’s story widely. They partnered with Terri McCormick in Being Misdiagnosed. They spoke with physicians, researchers, and patient advocates. They continue to educate families about the often-overlooked neurological and psychiatric manifestations of Lyme disease and Bartonella.

Most importantly, they have created Alec’s Place, a nonprofit dedicated to ensuring that Alec’s life continues to make a difference.

The organization reflects everything Alec represented: compassion, perseverance, curiosity, and service. Its mission is to empower doctors and patients to recognize the neuropsychiatric signs of tick-borne disease.

That mission reflects Rick’s own approach.

Rick is not interested in assigning blame. Instead, he wants to encourage curiosity and a willingness among healthcare providers to consider that infections may sometimes underlie severe psychiatric symptoms.

That perspective carries particular weight because it comes from someone who has spent his career inside the medical profession. Rick speaks respectfully of his colleagues and recognizes that physicians can only diagnose what they have been taught to recognize.

Yet he also believes medicine must continue learning. Too many clinicians receive little education about the neuropsychiatric effects of Lyme disease and associated infections, leaving patients and families searching for answers that remain just outside the traditional diagnostic framework.

Encouraging doctors to listen to their patients

Dr. Rick Dulude

Throughout our conversation, Rick returned repeatedly to one theme: listening.

“Listen to patients,” he told me. “They often have the answers.”

Those words apply not only to physicians but also to families. Parents know when something about their child has fundamentally changed. Patients know when the diagnosis they have been given does not fully explain what they are experiencing.

Rick encourages people to continue asking questions, seeking second opinions, and remaining open to possibilities that others may overlook.

His advocacy also extends to scientific research. Following Alec’s death, the family donated tissue to researchers studying tick-borne diseases in hopes of advancing our understanding of how infections such as Borrelia and Bartonella affect the brain. Even in death, Alec continues contributing to knowledge that may eventually improve diagnosis and treatment for others.

That willingness to think beyond personal grief is what makes Alec’s Place so remarkable. It is not simply a memorial to a beloved son. It is an active commitment to changing lives.

Your story may help others heal

As Terri writes in Being Misdiagnosed, the Dulude family continues telling this story because another family may recognize themselves in Alec’s journey.

Someone may realize that sudden psychiatric symptoms deserve a broader medical evaluation. A physician may remember Rick’s story when faced with a difficult patient. A researcher may find renewed motivation to pursue answers that have remained elusive for far too long.

Those possibilities are exactly why Rick continues speaking, even though each interview requires revisiting memories no parent should ever have to relive.

For those of us in the Lyme community, it is easy to become overwhelmed by stories of delayed diagnoses, chronic illness, and loss. Those realities are undeniably part of our shared experience. Yet stories like Rick’s remind us that advocacy can transform grief into something meaningful. Education can save lives. Research can create new possibilities. Compassion can give families the strength to keep moving forward.

Alec’s story will always be tragic. But because of Rick, Pam, Allison, Terri McCormick, and everyone involved with Alec’s Place, it is no longer only a story about loss.

It is a story about purpose, courage, and hope.

And if one family finds answers sooner because Rick chose to tell his son’s story instead of carrying it silently, then Alec’s legacy will continue touching lives for generations to come.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia. He doesn’t have Lyme but wrote his popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” to understand what Lyme survivors go through. The book is available on Amazon and the e-version (pdf) of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.