By Fred Diamond

For many people living with Lyme and other tick-borne diseases, the greatest challenge may not be the infections. For some, the consequences of delayed diagnosis extend far beyond fatigue and joint pain. They can affect sleep, cognition, emotions, relationships, careers, and in some extreme cases, survival.

That reality was the focus of this week’s episode of the Love, Hope, Lyme Podcast, where I spoke with LymeDisease.org writer and advocate Terri McCormick and Alexandra Sevo, whose remarkable story appears in Terri’s book, Being Misdiagnosed.

Terri’s book documents Lyme and other chronic illness survivors who have experienced tragic repercussions from not being diagnosed properly.

Alexandra’s experience is both heartbreaking and hopeful. It’s also a reminder that Lyme disease can profoundly affect the brain and mental health.

A bright student whose world began to unravel

Alexandra was a high-achieving student at the University of Chicago when her health suddenly changed.

“What turned out to be a classic Lyme rash was repeatedly dismissed by multiple doctors,” she explains. “Over the next several years, I developed severe sleep dysfunction, psychiatric symptoms, debilitating fatigue, cognitive issues, and eventually neuropsychiatric symptoms that almost cost me my life.”

Perhaps the most painful part of her story wasn’t simply becoming ill. It was watching the medical system repeatedly dismiss what her body was trying to tell her.

“My story became not just about illness,” she says, “but more about learning to trust myself when the medical system repeatedly invalidated what was happening in my body.”

When sleep stops being sleep

Many people associate Lyme disease with fatigue and chronic pain. Alexandra’s experience was very different.

“I would be staying up for days at a time and then would sleep for like sixteen hours,” she recalls. “My roommates would literally come wake me up and ask me, ‘Are you awake?’. That was my first signal that I lost trust in my body.”

She later experienced prolonged sleep paralysis.

“I woke up and I was paralyzed. I could not move. It was a very scary experience.”

Terri wasn’t surprised.

“People with Lyme disease and tick-borne illness do have a lot of sleep issues,” she explains. “Until you can get those sleep issues under control, you cannot heal.”

When Lyme looks like mental illness

One of the most sobering aspects of Alexandra’s story is how Lyme disease affected her mental health.

She describes feeling as though she was disappearing.

“It feels like you have dementia. It feels like you’re drunk. It feels like you’re high all the time when you’re not,” she says. “To slowly watch yourself fade away and then having multiple people tell you nothing’s wrong with you is terrifying.”

She also experienced anhedonia, which is the inability to experience pleasure.

“I remember thinking, ‘I’m not capable of feeling joy. I’m not capable of feeling happiness or hope.'”

Those symptoms eventually culminated in a suicide attempt. Alexandra later learned she had severe infections, neuroinflammation, and medication interactions that contributed to what she described as a psychotic state.

“The night that I attempted to kill myself,” she recalls, “it was like I was watching myself do it.”

Looking beyond psychiatric symptoms

Terri believes Alexandra’s story illustrates an important lesson.

“These psychiatric medications are given as band-aids,” she says. “They do not solve the problem.”

Instead, she encourages clinicians to continue asking difficult questions.

“We need to be looking, ‘Is there an infectious reason?'”

That doesn’t mean every psychiatric illness is caused by Lyme disease. But mental illness deserves compassionate, evidence-based treatment. Alexandra’s experience reminds us that clinicians should also remain open to infectious, inflammatory, or immune-related contributors when patients present with complex neurological and psychiatric symptoms alongside physical illness.

Lyme is the “Great Imitator”

Terri has spent years advocating for families affected by tick-borne disease, and she says one of the biggest challenges is simply recognizing how many different ways Lyme disease can appear.

“Tick-borne illness shows up in so many different ways,” she says.

That variability explains why patients are often diagnosed with multiple conditions before Lyme disease is even considered. It also explains why so many patients spend years searching for answers.

“Lyme is different for everyone,” Alexandra says. “It is an imitator, and it is also a gift in learning how to trust yourself.”

Then she offered a question every Lyme patient should ask: “What lie has Lyme told me?”

It’s a remarkable perspective from someone who nearly lost everything.

Terri ended with a message that captures the mission of every Lyme advocate.

“My hope with this book is that people continue searching for answers, to never give up, and to find better health.”

Stories like Alexandra’s remind us why awareness matters. They remind clinicians to keep listening. They remind families to keep believing.

And they remind every patient still searching for answers that hope often begins when someone finally says, “I believe you.”

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.