Surviving Powassan

a survivor’s account of a terrible illness

Originally written for, and published in Mushroom: The Journal of Wild Mushroom Hunting

We shouldn't be afraid of the outdoors. Of course, we say this as a general statement, but there are stipulations implied. Foraging has its inherent risks – mosquito and tick-borne diseases top many people's list of concerns. Lyme disease is the dominant tick-borne disease here in the northeast; most of us know someone who has had it. To be honest it has surprised me that I haven't contracted it, given how much I'm outdoors. Yeah... but I shouldn't say that, it's bad luck.

Among other diseases like Lyme and Babesiosis, the northeast also has a much rarer tick-borne virus, known only from Northeastern North America, Michigan and Wisconsin, and far eastern Russia. It was named “Powassan” in 1958 after the region in Ontario where it was originally detected. The first recorded patient, a young boy, did not survive.

It was first recorded in the US in 1970. Powassan is a flavivirus, a member of the “yellow fever” family which includes dengue, zika, west nile, and other encephalitis-causing viruses carried by mosquitoes and ticks. The Powassan virus attacks the cerebellum specifically. Outcomes are varied; some people barely register symptoms, others contract full-on meningioencephalitis and don't survive. There is no vaccine, no choice antiviral, no treatment other than supportive care. Humans are a dead-end host for this particular illness.

I was one of a handful of unlucky people to contract Powassan in November 2019, and develop serious nervous system symptoms. It came from a single tick attachment, the only one I had that season. I had found & removed the bloodsucker sometime in mid-October, it had likely been hitchhiking for less than a day. Two weeks later, I suddenly became ill.

The following is a brief recounting of what having Powassan feels like, to the best of my recollection.

At first it was just a wave of exhaustion, I was suddenly tired and settled in for a nap on the couch.

Upon sitting down, a wash of nausea came on suddenly, I felt a flush of warmth, dizziness, and queasiness. What began as a mild headache quickly progressed into a restless night of dull but searing pain.

Still, I thought it was going to be okay, mostly because of what people told me:

“It's probably nothing huge.”

“Tough it out.”

Our culture says this in various ways and you go with it. Even when you're sleeping 16 hour days on a quasar of fatigue and molten pain. “Is it really that bad?” or “It's probably just the flu” and everyone gets the flu from time to time. You err on the side of it being something familiar.

After five days I began to develop double-vision, prompting the first ER visit. "It's just a passing sinus thing" the first doctor said. I wanted to believe him, despite the searing ache on the inside the bones of my face. No stranger to sinus infections, I wasn't convinced. I recall leaving the ER for the first time wondering why a spinal tap wasn't done... how was this massive pain deemed merely a sinus issue? I didn't believe it, but I listened to the doctor nonetheless – something which is generally, but not always, a good idea.

Back in my own bed, I woke up at 2AM on a Friday inside of a burning headache, unable to keep my balance – swaying, stumbling, crashing into walls. I'd lost all sense of equilibrium. While the comparison seems natural it's not at all like being drunk. It's more frustrating, as you are very much aware, but you can't stop it from happening – you just lose all sense of where “up” is. This loss of balance prompted the second ER visit, and admission to the hospital for monitoring. My voice had begun to fade too, a result of the virus attacking my cerebellum and increasing pressure on my brain.

At the time, waking up from such pain felt like I had been sleeping eons on end – sleep was the most welcome state whenever I took the headache medicine. All you want to do is sleep, because it means the pain has subsided enough ot permit it. There was something seriously wrong, I was teetering on the edge of consciousness, and on my own two feet, but I didn't want to believe my mind was being so altered by pain and pressure. Still, as I faded in and out, I found myself a stone's throw from not caring about what came next. It's the sort of pain you just want to stop, no matter the consequences.

The fever spiked and waned, subdued by an changing array of medicines. At maximum it was 103F.

The next few days are come and go in memory.

[blip] [blip] [blip]

I spent these days mostly on a seesaw between restlessness, tortuous sleep and passing out.

The illness peaked sometime during these 3 days.

Then a couple days later the erratic fever broke.

Over the course of several weeks I began regaining my balance, vision, voice… and months later, some of my former energy levels.

The diagnosis was unclear the whole time. By process of elimination doctors were eventually able to narrow it down to “viral meningitis.” 2 months passed and the long-range CDC tests come back, and we learned the context and facts: "Powassan." It was the first I'd ever heard of it. The rare tickborne disease behaves like Lyme disease on steroids. It can take as little as 15 minutes to infect once the tick has attached. ~1-3 out of 10 who develops nervous system symptoms dies eventually, and ~5/10 have residual long-term effects, including severe disability. I appear to have dodged most of the bullets.

I'm not entirely sure what the lesson is, aside from:

• Ticks do not mess around

• USE DEET (FOR THE LOVE OF ALL THINGS HOLY)

• Check for ticks EVERY TIME you go outside

• Did I mention tick checks?

These seem intuitive, but I know many people overlook simple steps to prevent stuff like this. We get jaded and think it's not a big deal. We may even think nature a mostly innocuous entity.

Since (mostly) recovering, I have been part of a tickborne disease study at Rockefeller University in NY. My own blood is being used to identify & perhaps synthesize antibodies to combat this horrible virus. One of the interesting things we know now is how Powassan tricks the immune system into making inferior antibodies – the useful, potent ones seem to be far less common. This is part of its insidiousness, and why so many people are fatally inflicted. Whatever my body did was useful, so I keep my blood available to whoever is studying and needs it. Hopefully there will be antibody treatments or a vaccine sometime in the near future. I can only hope.

It's a virus I would not wish on my worst enemy. Don't be afraid of the outdoors. Just – take the precautions. Treat nature with the ancient respect she deserves; she is mostly indifferent to your presence.