Get Out— of the Woods

Lyme Disease is a Real-Life Horror Story

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The woods were once my cathedral. Appalachian Trail, May 2013. Photo by Lizbeth Finn-Arnold

May is Lyme Awareness Month. This means the media is actually paying attention to Lyme disease for a change and publishing articles and essays about the illness. You would think this would make me happy. Unfortunately, it does not.

One of the problems with Lyme Awareness Month is that many online journalists and publications rush to allay the public’s fears around Lyme, and are quick to rely on the CDC’s outdated stance on Lyme disease. Most of these articles downplay the seriousness of the disease. Mention Zika, and holy shit, people are TERRIFIED. The media seems to love that people are afraid of Zika, an extremely-rare virus, with better press-ready ‘optics’ than Lyme.

Meanwhile, over 320,000 people (a low estimate by some researcher’s accounts) acquire Lyme each year in the United States, and that number continues to rise. Still, Zika — the ‘scarier’ bug — grabs the headlines and the funding (even though it affects less than 300 people in the U.S.), while the CDC, press, and public treat Lyme disease like it’s ‘no big deal.’

Pardon my french, but Lyme disease is A BIG FUCKING DEAL.

At least to me, it is. It has turned my life into a real-life horror story.

One run-in with a bacteria-infested monster the size of a sesame seed intent on feasting on your blood, and BAM! You now become a person infected with Lyme and/or one of several other not-so-lovely co-infections (babesiosis, ehrlichiosis, Rocky Mountain Spotted Fever, anaplasmosis). If you’re lucky, you’ll develop a bulls-eye rash and get the antibiotics you need to quickly contain the infection.

If. You’re. Lucky…

If you’re not lucky?

You won’t remember being bitten by a tick or recall removing an engorged tick from your body. You won’t get a tell-tale bulls-eye rash (only 40% of patients get the rash).

Instead, you’ll get a terrible flu and feel like you just can’t shake it for months, and then years, afterward. You’ll go from doctor to doctor, complaining of headaches, joint pain, muscle spasms, chronic fatigue, muscle weakness, dizziness, brain fog, insomnia, mood swings, rages, anxiety, and depression. You’ll be poked and prodded, and given a clean bill of health from friendly but confused doctors who run blood panels that look great, and Lyme tests that come back negative.

If you’re not lucky, you’ll have your health, your vitality, and your life slip away from you. You won’t be able to work, because most days you can’t get out of bed or shower or hold a conversation. You’ll find new hobbies that revolve around reclining on a bed or couch in a dark room. You’ll hate going out to eat because you find you are sensitive to all foods and smells, and also the sound of other people’s voices drives you mad. You’ll become isolated inside your home and watch the world go by from your window. You will become a shadow of the person you used to be.

All because of a tiny tick.

Do you still think Lyme disease isn’t scary?

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I now stick to the wide path when I walk my dogs in the woods. Photo by Lizbeth Finn-Arnold

I used to be a nature girl. I loved to camp and walk in the woods. I moved into a house surrounded by trees. I’d walk barefoot in the grass. Sometimes I’d even sit on the ground (without a blanket) for hours. I loved being close to the earth. It was this love of nature and being active outdoors that exposed me to the spirochete that would rob me of my health and vitality, and ironically make it almost impossible for me to leave the house and be active at all.

Four years ago, I met my sister for a Girl’s Weekend and we hiked part of the Appalachian Trail in Northern New Jersey. There wasn’t much of an actual trail, and we spent much of our time walking through high grass and a heavily wooded area. I remember it was beautiful and relaxing (see photo at top of page); just what I needed. On my way home from our trip, I stopped for gas and the attendant asked me if I was on my way to church (it was Sunday morning). I told him I had already been to church. Back then, the woods were my cathedral. The woods were where I went to find God.

I was not thinking of danger when I went into those woods. I did not see signs warning me to stay on the path or avoid certain tick-infested areas. Still, at one point during our hike, I do remember seeing ticks on the back of my sister’s legs as she walked ahead of me. After we got back to the hotel we double-checked to make sure we had gotten all of the visible ticks off of us.

It’s only years later, after much research, that I learned that May is the time of year when the nymphs come out to feed, and most of them are tiny (about the size of a pin-head). It would have been easy to miss one.

Unfortunately, it only takes one to change a life.

Every time I see a parent post a photo on Facebook of their kids jumping in a pile of leaves or camping with the Boy Scouts or Girls Scouts, my gut instinct is to scream at the computer screen. “No! No! No! How can you be so careless?”

I was careless once. I thought I was indestructible. I thought I could venture into the woods and come out unscathed.

Why didn’t anybody warn me about going into those damn woods? Why didn’t they tell me to: GET OUT OF THE WOODS! AND STAY OUT UNTIL IT’S SAFE AGAIN.

I know I sound paranoid, and a little bit like the Girl Who Cried Wolf. But if you lived for years with constant pain and fatigue, you might not be so quick to dismiss Lyme disease as something that is ‘hard to get’ and ‘easy to cure.’ You might not shrug when people ask you if you are worried about getting Lyme disease. Perhaps, you might even think I’m not being paranoid enough.

I want people to educate themselves about the real risks of Lyme disease, but when I read online articles, I sometimes get so angry I can barely control myself. All these articles say the same thing — ‘take simple precautions’. But these articles aren’t telling you what you are risking when you go into the woods. It’s not about a rash and some mild joint pain. Chronic Lyme can last for years and destroy your life. Spirochetes can get into your brain and your heart. Lyme undermines your entire immune system, making you feel like you are trapped inside a ninety-year-old body. But it doesn’t just exhaust you physically.

It is a disease that tries to conquer you from within — mind, body, heart and soul.

SELF magazine ran an article recently with typical advice about Lyme. After running a headline that warned the reader that Lyme cases have tripled in the last twenty years, it then concluded with a doctor who states: “I don’t think anyone needs to stress about Lyme disease — just be aware.”

SERIOUSLY? Be aware? Don’t stress?

Maybe people DO NEED TO STRESS about Lyme. Maybe doctors who see patients coming in with unexplained autoimmune symptoms that defy diagnosis and treatment NEED TO STRESS!

Maybe the only way the CDC is going to take Lyme disease as seriously as it does Zika is if WE ALL STRESS about the tick-borne illnesses lurking in our woods. Maybe then, doctors, and the press, and the CDC will do more than just dole out lame guidelines during Lyme Awareness Month. Maybe they’ll actually dedicate time, money, and resources towards creating accurate diagnostic tests and effective treatment plans for the hundreds of thousands of people currently suffering from tick-borne illnesses.

I’m not going to offer easy assurances to you about Lyme disease or offer simple advice. I don’t want you to feel safe. I want you to know what you are going up against. I want you to understand that tucking in your pants isn’t going to help if a nymph drops into your hair and decides to feed there for a couple of hours or a couple of days.

My advice — GET OUT!

I feel like there are sharks swimming in the ocean and I’m Roy Schneider in JAWS screaming at the dopey kids to stop splashing and get the fuck out of the water. Meanwhile, clueless parents sit on the sand, slathering sunscreen with 45 SPF on their children, thinking this will offer total protection. I get it, I really do. We are all doing the best we can with the information we have. However, when it comes to Lyme, that information is severely lacking. Maybe we worry too much about some things, and not enough about others.

Today, I still love looking at the woods or walking on a wide footpath (preferably a paved or gravel path) in the woods. But you couldn’t pay me a million dollars to set up a tent and spend a night sleeping on the ground.

There are real-life monsters lurking in those woods. I’ve seen them up close and personal, and I’m not stupid enough to go back for more.

I write, create, instruct. My curiosity is expansive — health, happiness, relationships, spirituality, TV/film, psychedelics, feminism, neuroscience, life.

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