LymePath is in development. This is an early landing space with initial resources and context.
Clinically, Lyme is defined as a single infection of Borrelia burgdorferi, a necessary simplification that allows medicine to diagnose and treat. But when the illness is confined to a single organism, what doesn’t resolve neatly afterward is often displaced into separate categories, rather than understood as part of a continuing experience.
Lyme begins with a tick, not a lab result. A tick bite is a vector-borne event: complex, mixed, and not fully reducible to a single organism. When people speak from this frame, they’re responding to the exposure as it occurred, not just to what can be clinically separated from it.
From my experince, Lyme stops looking like a single event and starts looking like a path. Something that unfolds through infections, immune responses, treatments, and partial recoveries. What matters isn’t just whether one thing is present, but what never fully returned to baseline. This frame exists because none of the others can hold the whole story on their own.
Others mean Lyme as a medical diagnosis, defined by criteria, tests, and treatment guidelines. This works when cases follow expected patterns. But many of us don’t fit those patterns, and once you fall outside them, the diagnosis stops explaining what’s happening, even while the illness continues.
For many, Lyme is what didn’t end when treatment did. Symptoms change, move, and persist in ways that are hard to explain or prove. When this experience can be dismissed because it doesn’t fit a clean definition, that’s where frustration and distrust really take hold.
The Lyme debate isn't heated because people are careless or dishonest. It’s heated because we’re often using the same word to mean entirely different things. Until we’re clearer about the language we’re using: disease versus illness, organism versus experience, we’ll keep arguing past each other, even when we’re describing real, overlapping truths.
Some people find relief within institutional medicine. Some do not. Many live in between. Functional enough to be dismissed, suffering enough to keep searching.
When suffering persists, people explore.
Not to reject modern science, but because the care available to them isn’t resolving what they’re living with. Follow that honestly and the truth appears:
Illness is not orderly. People improvise. Try something that helps, then hurts. You stop. Start again. You carry hope and doubt at the same time. We listen to our bodies, try to. Ask questions, deep dive books, websites, podcasts. Decisions carry risk either way. Waiting is also a risk. We adjust because life doesn’t pause for permission.
This isn’t defiance. It’s adaptation under pressure.
It’s what happens when people are left to absorb the cost of a system’s limits: in their bodies, their relationships, their sense of self.
When institutional answers run out, people don’t stop living. They keep going. Messy, tired, creative, human. And then they’re told it doesn’t count.
We refuse that erasure.
LymePath is being built as a private, personal conversational tool where people speak honestly about what they’re trying and what they’re living through. It reflects experience back while it’s still happening, before it’s explained away, cleaned up, or forgotten.
At its core, LymePath is a tracking tool. You record treatments, protocols, decisions, symptom shifts, regressions, and breakthroughs in your own language, over time. That record belongs to you.
It also opens a contained, anonymous view into what others are actually doing. Not the internet, not social media, but a searchable field of real attempts: clinical treatments, research-informed approaches, herbal, dietary, physical, psychological, psychedelic. Everything people are already trying.
When lived experience is allowed to exist without filtering, isolation breaks.
Patterns surface.
Threads that repeat.
Paths that converge.
This is not “patient experience.” That language assumes compliance and containment. This is human experience, before permission, before approval, before someone decides whether it counts.
LymePath sits alongside medicine and research, but goes where they don’t: into what’s minimized, dismissed, or ignored. No questionnaires. No checklists. Just talk. held privately, and understood over time.
More precisely: LymePath aims to find correlations and patterns in the overlap of personal navigations as a real epistemic category.
Not anecdote.
Not testimony.
Not “patient-reported outcomes” filtered through predefined surveys and institutional frames.
LymePath treats lived experience as a primary domain of data, alongside clinical and research data, not in opposition to them.
We’re not here to encourage risk or reckless choices. Testing and treatment matter, and many people are doing careful, thoughtful work with clinicians they trust. At the same time, illness is lived continuously, not episodically, and much of what shapes outcomes happens between visits, outside results, and over time.
People are already navigating uncertainty. They are already trying to understand what’s helping, what isn’t, and what’s changing. That reality deserves to be seen clearly, spoken in one’s own words, and held responsibly.
The data belongs to the people who create it. Before it’s ever useful to anyone else, it serves one essential function: clarity for yourself so you’re not navigating this alone, in the dark, one isolated decision at a time.
The aim that we should all have is to suffer less.
A final note:
Lyme disease is biologically specific. But that precision is not how the term is commonly used. “Lyme,” “Lyme disease,” and “chronic Lyme” function as blanket terms people use to describe a broad and confusing range of ongoing illnesses they’re trying to make sense of. This isn’t a failure of language, it’s how humans communicate under uncertainty. Expecting experience to conform neatly to categories misunderstands how people live and speak. Listening to experience as it’s actually described yields clarity, continuity, and patterns that would otherwise likely be lost.
Clinically, Lyme is defined as a single infection of Borrelia burgdorferi, a necessary simplification that allows medicine to diagnose and treat. But when the illness is confined to a single organism, what doesn’t resolve neatly afterward is often displaced into separate categories, rather than understood as part of a continuing experience.
Lyme begins with a tick, not a lab result. A tick bite is a vector-borne event: complex, mixed, and not fully reducible to a single organism. When people speak from this frame, they’re responding to the exposure as it occurred, not just to what can be clinically separated from it.
Others mean Lyme as a medical diagnosis, defined by criteria, tests, and treatment guidelines. This works when cases follow expected patterns. But many of us don’t fit those patterns, and once you fall outside them, the diagnosis stops explaining what’s happening, even while the illness continues.
For many, Lyme is what didn’t end when treatment did. Symptoms change, move, and persist in ways that are hard to explain or prove. When this experience can be dismissed because it doesn’t fit a clean definition, that’s where frustration and distrust really take hold.
From my experince, Lyme stops looking like a single event and starts looking like a path. Something that unfolds through infections, immune responses, treatments, and partial recoveries. What matters isn’t just whether one thing is present, but what never fully returned to baseline. This frame exists because none of the others can hold the whole story on their own.
The Lyme debate isn't heated because people are careless or dishonest. It’s heated because we’re often using the same word to mean entirely different things. Until we’re clearer about the language we’re using: disease versus illness, organism versus experience, we’ll keep arguing past each other, even when we’re describing real, overlapping truths.
