Lyme Disease, Misdiagnosis, and the Journey Back to Self
“It’s difficult to answer when my symptoms first started because in hindsight, I was never an overly robust, vital child,” explained Emily (name changed for privacy). “My health has been pretty volatile most of my life, but there were certain things that were just weird but mostly manageable.” Emily had a few tests done, but there wasn’t anything particularly conclusive, so she just tried to move on with her life (who else can relate to that one?).
Fast-forward to her early 20s. Emily had moved from Central Wisconsin to Colorado, and started having very noticeable, very scary symptoms. A sinus infection seemed to pull the first thread, but the rest unraveled fast: her digestion shut down, her energy evaporated, and her personality seemed to fade along with it. Everything was going downhill quickly.
That moment marked the beginning of a long, complicated search for answers. Answers that wouldn’t come easily.
The Medical Maze
Emily did what most of us would do: she went to the doctor. Then another. And another. At first, they treated her for gastroparesis. Then they scanned her brain for a tumor. Hooked her up to heart monitors. Ran labs. Prescribed magnesium, Reglan, and later anxiety meds…because if there was no clear answer, it must be anxiety. Each appointment brought more data but no clarity. Each treatment plan felt more like a bandaid than something that was designed to heal in the long-term.
Her symptoms didn’t follow the rules. Her heart would race while she was sitting still. Her vision blurred. She’d wake up shaky. In certain moments, she couldn’t recognize where she was. She wasn’t even 30 years old but her body and mind were suddenly forgetting how to be in the world.
A doctor finally looked at her and said, “I can tell something’s off. I just don’t know what it is.” That honesty was a rare gift. Too often, the response was dismissive—like the ER physician who nearly laughed before offering her a prescription for anxiety.
Eventually, her blood sugar was found to be dangerously low, but even that didn’t explain everything. It seemed as though Western medicine had reached its limits, and Emily knew she needed to look elsewhere.
She tried functional medicine next. There were small wins—addressing SIBO, uncovering food sensitivities, regulating hormones—but nothing that made her feel like herself again. The puzzle was still missing too many pieces.
“I very much started to question myself and wondered if I had lost it?,” she admitted. “Am I making it up?” The unpredictability of her symptoms had started to give her anxiety, but that came after and wasn’t the root cause.
It’s a feeling many of us know all too well. When your tests are “normal,” your suffering starts to feel suspect. Even to yourself.
A therapist once asked her, “What if you never get better?” It wasn’t meant to be cruel, but in that moment, that wasn’t a rabbit hole she could go down. One of Emily’s strengths is that she can transmute frustration into action, so staying focused on finding the next piece to the puzzle was a huge factor in keeping going.
Not a Diagnosis, But a Direction
In 2019, Emily’s provider suggested Lyme disease. The test results were inconclusive, but the symptoms lined up. Neurological issues. Gut dysfunction. System-wide imbalance. A body that seemed to have lost its ability to regulate.
Her suspicion? That she’d been living with Lyme since childhood, maybe even born with it. Growing up in central Wisconsin—a known hotspot—she was tested for Lyme multiple times. Many people who contract Lyme disease have the telltale “bulls-eye”—a red circle that grows around the tick bite—but not everyone does, which makes it even more difficult to diagnose.
What we do know about Lyme disease is that it’s caused by borrelia bacteria. Most people get it from getting bitten by a tick that has the disease. Ticks anywhere can carry the bacteria, but the highest concentration of infected ticks are found in wooded, brushy areas in the upper Midwest (where Emily grew up) and Northeast U.S.
The dots only connected years later. We now know that Lyme can stay dormant in someone’s system for years, and then there is a trigger (like a sinus infection and unsustainable busy lifestyle) that tips the scales.
“Treatment isn’t just about killing bacteria,” she said. “It’s about rebalancing everything. Your immune system, your detox pathways, your nervous system… it all gets thrown off.” Having a diagnosis for something like Lyme disease doesn’t always narrow down treatments since it shows up so differently in each person.
Despite everything, Emily has been able to maintain her career. She's grateful for the flexibility of remote work, which has allowed her to manage symptoms without giving up her livelihood.
But even with relative “functionality,” the toll has been heavy because her condition isn’t always obvious, especially to strangers.
Emily doesn’t like to use terms like “chronic illness” or “disability.” For her, language matters. “I say I’m facing health challenges. That feels more honest and more hopeful without attaching to a label or a diagnosis.”
Her belief in full healing isn’t naive. It’s essential. And it’s shaped her entire approach to wellness.
Healing Isn’t Linear
Meditation. Yoga. Nervous system work. Genetics. Bioenergetics. Homeopathy. Ozone therapy. Emily has tried it all, but not in desperation, in devotion. She researches. She questions. She listens to her body. She works with her care team as a partner, not just a patient.
“I don’t blindly follow,” she said. “I know my body better than anyone. That’s been one of the biggest lessons: I have to lead this journey.”
Some tools, like PEMF or ionic foot baths, surprised her with their impact. Others, like hyperthermia, she’s chosen to hold off on for now. “You have to weigh time, money, and risk. And you have to be grounded in that decision.”
And then there’s also the emotional toll of constantly being on the search for answers. “I very much learned the hard way that an extremely regimented lifestyle in the name of wellness can also be depleting. I am definitely somebody who, when in a hard life scenario, swings toward anger instead of sadness because it’s motivating.” She had to sit with herself and weigh the mindset options: resign to it or accept what is while continuing to move forward.
“There is so much—and continues to be—so much mental resilience required, just talking to myself and saying ‘this is where I’m at right now, but that may be different tomorrow.’ I always say ‘ride the waves,’ whether it’s life or fatigue or something else.”
In her effort to keep moving forward, Emily has recently switched to a new provider. “That is also just a part of Lyme Disease,” she explains. “Most people have seen more than seven doctors before they even get a diagnosis, much less after for treatment. My last doctor got me to a certain point but I'm not quite finished yet and there's something missing. Sometimes after two years you just need a fresh set of eyes, so I recently started working with a WI-based nurse practitioner who had Lyme as a child and takes an integrative approach.” Emily has found that providers who have gone through it themselves or had a family member who has/had gone through something similar seem to be more understanding.
There’s no finish line yet. But Emily isn’t waiting to be “fixed” to feel whole.
She’s shifted how she moves through the world with less push, more permission. She’s learned to trust herself when doctors don’t. She’s exploring the emotional and spiritual layers that illness reveals. And she’s unlearning the idea that wellness must look like relentless energy and certain lab results.
Healing isn’t just physical. It’s emotional. It’s spiritual. And it’s ongoing.
To others navigating the fog of an invisible illness, she offers this: You don’t need proof to be taken seriously. Rest when you need to, but always keep moving forward. Keep listening. Keep advocating. Keep believing. Find people who see you and understand you.
Above all else, know that you’re not alone.
