Living With Lyme, Mold Illness, and Medical Misogyny: My Path Back to Plants

A Perfect Storm

It took me years to understand that I was living with Lyme disease and mold toxicity. In the damp, shaded forests of Appalachia. both threats were always present— so present, in fact, that they became almost normalized. Every home I lived in had mold. Negligent landlords never cared, and as a renter, fighting mold always felt like a predetermined losing battle. And the ticks—well, they were everywhere. With rising temperatures, longer warm seasons, and ongoing ecosystem imbalance, tick populations have exploded across the United States. The risk is real, yet still profoundly underestimated.

Like many people, I never had a bullseye rash. I didn’t know that fewer than half of Lyme cases present with this so-called “classic” sign. Many people never develop a rash at all. Many never see the tick. My infection remained invisible until my symptoms became neurological, cardiovascular, and psychological—by which point the illness had already taken deep root. And instead of being supported, I was repeatedly dismissed, misdiagnosed, and told it was “all in my head”.

The Collapse: When My Body Could No Longer Hold It All

For me, the first symptom was insomnia—debilitating, body-breaking insomnia. It was as if my entire system forgot how to sleep. At first it was frequent waking, then it became nights of no sleep, then three, four, sometimes five days without rest. No remedy or pill or meditation practice could touch it. Insomnia is a hell I wouldn’t wish on my worst enemy. It dismantled my ability to work, think, function, or survive. My mental and physical health unraveled. I genuinely thought it would kill me.

Soon, other symptoms followed:

• fainting episodes

• brain fog

• days of being unable to get out of bed

• joint pain and body-wide inflammation

• seizure like episodes and convulsions

• nighttime neurological firestorms that felt like fire ants crawling through my brain

• psychiatric symptoms: depression, OCD, anxiety, paranoia

Doctors suggested bipolar disorder, borderline personality disorder, amongst others. I was placed in a psychiatric facility. No one would order tests. ER after ER visit, practitioner after practitioner—I was treated like a hysterical woman. This is the part of the story that many women, trans folks, and disabled people recognize instantly: the deep medical misogyny, the disbelief, the immediate psychiatric labeling when the body presents with complex symptoms. I became lost in that world for years.

Eventually, out of pure desperation, I ordered my own panels. The results were clear: Lyme disease, mold toxicity, and, later, a genetic connective tissue disorder—Ehlers-Danlos Syndrome which impaired my body’s ability to detox. It was an implosion of pathogens, toxins, genetics, and systemic neglect.

The Reality of Late-Stage Lyme and Mold Illness and a Body That Can’t Detox Normally

I’m not healed and I may never be in the linear sense Western medicine prefers. Ehlers-Danlos will always be with me. Even if I clear the Lyme infection, the spirochetes—the corkscrew-shaped bacteria—may have already caused lasting damage. These bacteria are known to burrow into bone, nerves, joints, cartilage, and connective tissue. Many people develop persistent symptoms, yet late-stage or chronic Lyme remains widely unacknowledged in mainstream medicine.

Instead, the only support often available comes from functional or Lyme-literate practitioners who rarely take insurance. I was quoted $15,000–$40,000 for an initial round of treatment—an amount entirely out of reach for many people, especially chronically ill folks already pushed to the margins financially.

The diagnosis didn’t bring relief. It brought the full weight of medical injustice, financial devastation, and a complete physical, emotional, and spiritual collapse. There was no clear answer, no cure, no safety net.

There was only the slow path inward.

Mold illness and Lyme behave similarly inside the body and they inflame each other. In a desperate attempt to help myself, I began trying detox protocols, only to painfully learn that detox is nearly impossible when the body is already malnourished, inflamed, and genetically predisposed to impaired detox pathways.

This is the part of chronic illness most people don’t want to hear: Detox is impossible without nourishment. Repair is impossible without rest. And healing cannot happen in a state of constant fear.

I had been trying to force my way out of illness but fear was making me sicker. I was recreating medical trauma in my own healing practices, pushing my body instead of listening to it. So, I stopped trying to escape myself and I moved toward something gentler.

Herbalism as reclamation

A few weeks ago, I walked into a local apothecary and told the herbalist I had Lyme, mold toxicity, and Ehlers-Danlos Syndrome. Without a word, she walked to the shelves and pulled down the exact herbs I was there for without me even telling her. Of course she had seen it before. Herbalists are like the mycelium of a community ecosystem— weaving, sensing, gathering, and offering. They exist outside the system, outside censorship, outside astronomical paywalls. They’ve been here longer than the institutions that now claim authority over the body. Returning to the plants wasn’t a last resort. It was a remembering. It is a spiral path I have walked in my life over and over again.

I’m not healed but I am no longer in crisis. Some days my neurological or cardiovascular symptoms still flare so intensely that I can’t get out of bed, but I’m not living in constant terror anymore. I no longer internalize my illness as a moral failure. I no longer think I’m crazy. I see the larger ecological, medical, and systemic forces at play. I want to scream about the intersection of climate change, medical misogyny, disability, and chronic illness. Simply all I can do is offer my truth, my story, and the plants that have held me through the darkest seasons.

Stay tuned for a later follow up post about my current herbal protocols, as well as other support and resources I have found along the way.