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Living with Lyme: My Highly Visible Life With an Invisible Disease

How Lyme Disease turned my entire world upside and why more people need to understand this debilitating disease.

I’ve waited 517 days to say these words.

I have Lyme Disease.

It’s been hell.

But the fog is beginning to clear.

This is what happens when an active man in his early 30s, in the absolute prime of his health, is struck down by an invisible illness that too few people know about. It could be anyone’s story. For the last 18 months it’s been mine—and I’m finally clear-headed enough to tell you about it.

Barely.

This is a scary ride, and it’s not easy for me to tell.

What Does Lyme Disease Feel Like?

Let me paint a picture for you. You know that feeling when you get off a really long-haul flight? Like to Australia or New Zealand, or wherever sits on the other side of your world. You’ve been in the air for 16 hours, you’ve had a few drinks, you’re a bit dizzy, you don’t know what time it is, you’re swollen from head to toe, and, since you’re in a brand new city, you keep walking in the wrong direction and getting lost. You’re achy all over and the jetlag is so bad you could fall asleep standing up at 1 o’clock in the afternoon.

Somehow, you’re awake, and you look fine—healthy, in fact!  Maybe a little tired, and like you could probably use a shower, but otherwise you’re still walking around, ordering coffee, talking to people, and riding public transit.

But you don’t feel right. You can’t think straight. You’ve got a headache. Everything just feels off. Strictly speaking, though, you’re still functional.

Now, let’s up the ante. Take about 40 elastic bands and wrap them around your forehead like a headband. Now put your thumbs on your eyeballs and apply 2 pounds of pressure. Don’t stop.

Drop a tab of acid while you’re at it. Stick a Swiss army knife right in between your hip bones, and drive a few sewing needles between your elbow joints and your knees.

Next, let’s take away your appetite and your libido. Let’s just get rid of them entirely. We’ll swap out a few other hormones, too, like the one that keeps you from having to pee every hour, and we’ll mix in a little bit of nausea…not quite enough so that you throw up, just enough so that you feel like you might.

Sunset in Paris

A pretty picture of Paris to distract you.

Since everybody loves the picky eater in the group, let’s toss in a few food sensitivities, too. Gluten, dairy, coffee, sugar, sugar substitutes, red meat, starches, most tree nuts, anything that grows underground and nightshades—they’re all off limits for various reasons, but mostly because they make your brain swell to a point that makes you feel like your head will burst and splatter your brains on all four walls of the room. Since you obviously don’t want that to happen, you’re left with a very exciting diet of chicken, chicken, fish, leafy greens, chicken and fish.

Any one of these symptoms could ruin your day on it’s own, but we’re not done yet.

Recall the feeling of leaving a nightclub at dawn. Your ears are ringing, and as you step outside the sunlight literally blinds you. Solace only lies in a dark room with no sound. In that dark, boring room, you try to read to pass the time but the words on the page aren’t making sense. You try watching movies, but your brain is only working half as fast as usual, and you can’t even remember why Matt Damon is trying to get to the MAV.

If you’re a professional travel writer, like me, you can’t work, because your brain doesn't work well enough to actually write anything and you’ve been stuck in a noiseless dark room for the past 517 days.

Now go to sleep and repeat. And keep repeating, day in, day out, as weeks turn into months and the seasons come and go. This is your new normal.

As you can tell, it’s been a really fun year.

Lyme Disease Might Be The Most Misunderstood and Underrepresented Medical Issue Currently in Existence

Don’t get mad. I’m about to use the C word.

When you tell someone you’ve been diagnosed with Cancer, the universal response is, “oh fuck, Cancer. Cancer. YOU HAVE FUCKING CANCER.”

When you tell someone you have Lyme Disease, the response is usually, “Oh no, I know somebody who had that. I heard it sucks. I hope you feel better soon.”

Look, I know—the C word is a sensitive subject. But it’s the only disease that I know of that elicits the visceral “oh fuck” reaction that I wish people had to Lyme Disease. When someone tells you they have Lyme, your response needs to be, “OH FUCK.”

Is this an unfair comparison? Maybe not. Many people aren’t aware that the clinics that treat patients for Cancer are the same clinics that treat Lyme Disease. The difference between the two is that, while Cancer can end your life, the effects of Lyme Disease will make you wish you were dead.

Perhaps the cruelest thing about Lyme is that it doesn’t actually kill you.

And it’s because Lyme Disease doesn’t kill you that it fails to receive the medical attention that it requires. There are also five- to six-times more cases of Cancer every year than Lyme Disease, so when you look at the numbers, Cancer is definitely getting the attention it deserves. And rightfully so—I don’t want to take away from that whatsoever. This is just a comparison.

Lyme is an advanced bacteria that eludes much of medical science as we know it today. The blood tests are unreliable, with just 50-60% accuracy rates, and there is no known cure. Everybody responds differently to Lyme Disease, which makes it both difficult to diagnose and difficult to treat.

Even worse, the CDC actually refutes the existence of chronic Lyme Disease. They outright claim it doesn’t exist. But here I am—and here are so many others—sick, many without a voice as loud as mine.

Landmannalaugar, Iceland

Traveling with my sister in Landmannalaugar, Iceland

So What Exactly is Lyme Disease, and How Does it Affect Your Body and Brain?

I want to be clear that I don’t fault anyone for not knowing about Lyme Disease. There simply aren’t enough people out there educating the world on how terrible this disease really is.

That’s part of what I’m doing here today.

I want to tell you what my life has looked like for the past 18 months, and what life looks like for millions of other people around the world. If it scares you, I’ve done my job. Everyone should be scared, and everyone should know the facts.

If you’ve read about Lyme before, you may have assumed it’s less of a disease and more of a nuisance, like a prolonged head-cold. A Google search for Lyme Disease results in a whole lot of information that doesn’t really sound all that bad on a surface level. It will tell you that Lyme Disease is acquired through a tick-bite and show you a list of relatively unremarkable and nonspecific symptoms:

  • headache
  • joint pain
  • muscle pain
  • fatigue
  • swollen lymph nodes
  • fever
  • nausea
  • dizziness
  • brain fog
  • and problems with short-term memory

It doesn’t sound great, but it also doesn’t really sound that bad. It mostly makes it seem like a person with Lyme will feel really tired and their bones and joints will ache a bit. You’ve dealt with worse, right?

But this is where the misinformation begins, and this is why you and the vast majority of people misunderstand Lyme.

Rainy in Ghent, Belgium

A rainy evening in Ghent, Belgium

The Science of Lyme Disease

Let me preface this part of the article by saying that no, I’m not a scientist, and I never did well in science class. I do love anatomy (*creepy wink*) but biology was never my strong suit. I’m going to try to make this as simple as possible for three reasons: 1) I have Lyme Disease and my brain doesn’t work right, 2) I’m not a doctor, and 3) this shit is really confusing.

Lyme Disease is a spiral shaped bacteria known as Borrelia burgdorferi. Honestly, I’ve had it for years, and I still don’t know how to pronounce it.

What I do know about the bacteria is this: due to their shape, the pathogens act like a corkscrew, and they dig and tunnel their way into bodily tissue. They have a propensity for soft, mushy cavities in your body, and they tend to make a home there.

Those mushy cavities are often between your joints and—here’s the really fun one—in your brain. So to further understand how Lyme affects the cognitive abilities of a person, we need to talk about the brain for a minute. Bear with me.

The human brain is composed of three parts, right? The brainstem, the cerebellum, and the cerebrum.

The brainstem is in charge of the most primitive functions of a person: pumping blood, breathing, digestion, sleeping, etc.

The cerebellum is what’s in charge of skilled, coordinated movement, like walking.

Lyme usually doesn't affect these parts of the brain, which is why, to most people, someone with Lyme looks perfectly healthy. They still pump blood, eat food, walk around, and know how to do most basic human functions that create the appearance of “normality.”

That’s why people tell me I look totally healthy—really great, in fact—and that I don't look sick at all. My heart still pumps and I still know how to raise a fork to my mouth.

Paris from the Printemps Rooftop.

Paris from the Printemps Rooftop.

The third part of the brain, the cerebrum, the part that Lyme affects, is divided into four further sections: 1) the frontal lobe, 2) the parietal lobe, 3) the temporal lobe, and 4) the occipital lobe.

(To the doctors, scientists and med students reading this, yes, I know there is some further complexity with the left brain and right brain and a few other things, but I’m trying to keep this simple.)

The Mayfield Clinic, a neurological research center in Ohio, has laid this out quite simply:

The frontal lobe controls:

  • Personality, behavior, emotions
  • Judgment, planning, problem-solving
  • Speech: speaking and writing
  • Body movement
  • Intelligence, concentration, self-awareness

The parietal lobe controls:

  • Interpretation of language, words
  • Sense of touch, pain, temperature
  • Interpretation of signals from vision, hearing, motor, sensory and memory
  • Spatial and visual perception

The occipital lobe:

  • Interprets vision (color, light, movement)

The temporal lobe controls:

  • Understanding of language
  • Memory
  • Hearing
  • Sequencing and organization

The surface area of the cerebrum, which is to say the surface area of all four of these lobes, is called the cerebral cortex. And Lyme Disease loves to hang out in the cerebral cortex.

Now when the body’s immune system recognizes a foreign entity, it responds by releasing cytokines, which regulate cell populations—basically, it’s what the immune system releases to try to ward off invaders.

In the case of Lyme, the cytokines that are released trigger an inflammatory response in the body, and prolonged inflammation is the enemy of health. It’s actually the inflammation of the brain that causes all the neurological symptoms of Lyme Disease, and inflammation in the joints that make them hurt.

TL;DR: In case you didn't read/absorb all that, basically, Lyme Disease causes debilitating amounts of inflammation in your body and brain, and especially affects the cerebral cortex which “plays a key role in memory, attention, perception, awareness, thought, language, and consciousness.” (Wikipedia)

So take a minute, if you will, to think about the actual implications of this on a person. When a foreign pathogen moves in and makes a home in the cerebral cortex, and starts inflaming all those little lobes, every single one of those functions is compromised—your memory, your attention, your perception, your awareness, your thought, your language, and yes, your consciousness.

The complications of having Lyme within the brain go further, but I’m going to stop here. My point is to explain (on a surface level, believe it or not) how severe an impact a tiny little bug can have on the overall functioning of a human being.

A church in the small town of Selfoss, Iceland

A church in the small town of Selfoss, Iceland

How “Lyme Brain” Affects a Person

For more than a year, I’ve felt disconnected from reality. Most days I feel disconnected from my own body, as though a glass pane has formed between my own consciousness and the outside world. Everything on the other side is just…muffled.

The manifestations of Lyme Disease are different for each individual, but there is one unifying factor that is exceptionally difficult to articulate: the brain fog.

My memory is shot, my attention span is worse than it’s ever been, and sometimes I fail to understand even the most basic sentences. My brain’s ability to link thoughts and function normally has been robbed.

Quite literally, an infection has gotten into my brain and begun toying with the structural components. And when you start messing with receptors in the brain, everything changes. In every way that counts, Lyme changes who you are.

In some ways, the effects on the brain are quite similar to those caused by LSD. When I tell people what it feels like to have Lyme, I tell them it feels like I’m tripping on acid, all day, every single day of my life. For 18 months straight.

Unfortunately, this isn’t a fun acid trip with pretty hallucinations and vibrant colors. This is a very scary one, filled with disorder, crippling anxiety and overwhelming depression. The neurological effects of Lyme Disease are the most frightening thing I’ve ever experienced in my life. They are truly, viscerally, emotionally and mentally terrifying.

Copenhagen by night

Copenhagen by night.

Though I’m starting to getting better, I still deal with the brain fog on a near-daily basis. At the end of last year, when I was at my worst, I was traveling in Bangkok; it was so bad I would get lost in my own neighborhood. I would become disoriented, confused and unaware. Coming home from Asia, I would get lost in the airport, senile, walking circles around my gate.

And once I got home, even though I had just returned, I would sit on my couch trying to recall where in the world I had just been traveling. I couldn’t even remember.

So when someone with Lyme Disease tells you they have “brain fog,” they’re simplifying the very complicated nature of the above.

How Lyme Disease Turned My Entire World Upside Down

As you can imagine, this past year of my life has been very different from years prior.

Those of you following my blog may have noticed some changes. Those of you who are my friends may have started to hear from me a whole lot less. And if you’ve read the 2,500 words that it took to get to this point in the article, I have a feeling you’ve probably figured out why.

The Fall

I stopped traveling this year. Kind of. Despite actually being almost totally housebound, I’ve traveled to Denmark, Iceland, Belgium and Paris. I tried really, really hard to travel a bit this year, but by and large, most of that travel has turned out to be a mistake. I simply wasn’t healthy enough to travel and I’d been unwilling to come to terms with the fact that my wings have been clipped.

As my loyal readers will know, I’m incredibly stubborn, and even after months and months of fighting, I refused to accept reality. In large part, that’s why I haven’t written anything about my Lyme diagnosis in seven months.

But here I am, coming to terms with the fact that this shitstorm has stolen more than a year of my life. And realistically, we’re not just talking about a year.

Though the details are more intricate, we’ve determined that this was either a new infection in about 2013 or a relapse around that time from an infection ten years prior.

The truth is that Lyme Disease is never really cured—it goes into remission.

From 2013-2015, I was living out my life, none the wiser. The symptoms were never severe enough to notice at the time, and so I never actually knew that anything was wrong.

Plus, how can you quantify the alteration of your consciousness? To most people, consciousness is just the state of being awake. But when you’ve had your consciousness broken down into multiple pieces, you realize that it’s more than that—there are components. There is your brain function, your vision, your emotions, your hormones. They all play a central role in the simple concept of “how you feel.”

Christmas in Brussels, Belgium

Christmas in Brussels, Belgium

So for at least two years before figuring out that something was wrong, I was already being affected by Lyme, and looking back on those years, I can now pinpoint exactly why weird things were starting to happen.

  1. I started to get much more irritable, and even my mother noticed that about me before we knew I had Lyme.
  2. On my first travels through Southeast Asia in 2013, after I had completed my stint in China, I noticed that I just wasn’t having as much fun as everyone else. I started traveling like more of a loner, and though I love to socialize, sometimes, it was just a little bit harder than it had been before.
  3. When I moved to New York, I fell out with some friends. Things got weird. Things got emotional.
  4. When I moved into my apartment in the city, I started feeling stoned all the time. I blamed it on my roommate, who was smoking a lot of weed.
  5. My departure from New York caused a literal emotional breakdown, in which I found myself in a hysterical fit for three whole days. It was totally inexplicable.
  6. The mental, emotional, and hormonal effects of Lyme played a strong role in the destruction of a relationship over the following summer.
  7. And as I traveled through Europe in the summer of 2015, the only thing I felt was burned out. I was tired, achy, and life was looking a lot less lustrous that it once used to.

By the time August rolled around, everything had come to a head, and that’s when things started to get really bad. That’s when I found myself in a state of disorientation, confusion, and fatigue.

Since figuring out that this was all related to Lyme, I’ve struggled to accept the realities of what this means for my life. It has left a wake of destruction behind me and it has been a devastating blow to my life.

The Return

It’s not really as simple as bouncing back. It’s a long and drawn out process, one that I’m dead in the middle of right now. It has its ups and downs—it’s a very rocky recovery process, filled with ebbs and flows, good days and bad days, good weeks and bad weeks.

The good weeks are when you hear from me. The bad weeks are when I completely disappear.

In just the past month or two, I’ve finally started to make some progress. Yes, it’s taken almost a year and a half to even be able to say the word “progress,” but I still deal with brain fog almost every day.

In many ways, treating Lyme Disease is like peeling back layers of an onion. We are continuing to peel, but it’s taking a very long time. Most recently we discovered, through a brain scan, that I’m facing recovery from more than just Lyme and two coinfections called Babesia and Bartonella, but also toxic mold exposure.

Otherworldly landscapes near the Hekla Volcano in Iceland

Otherworldly landscapes near the Hekla Volcano in Iceland

You know how people used to go crazy from Syphilis? Lyme is closely related. Babesia is a cousin of Malaria. Bartonella is like trench fever, which soldiers from WWI were infected with due to their deplorable living conditions. And toxic mold is exactly what it sounds like. MOLD.

Now put them all together into one.

I spend most of my days inside, which means, on my good days, when I do get outside, I appreciate the smaller things a whole lot more. Sometimes, just the smell of a patch of flowers will fill me with immense joy.

But the days I spend inside are days spent working. And despite the fact that my work takes me three times longer to complete now (my brain is mush, now, remember?), I’ve been able to do a whole lot more of it.

So I’m working a lot. I’m trying to build a business. I’m trying to build this business. And I’m seeing a lot of growth. In fact, these days, I have more work than I know what to do with.

As a freelancer/entrepreneur, that’s a really good problem to have.

But, as you can imagine, the medical bills for my treatment are outrageous. Due to the “invisibility” of Lyme, and the fact that the CDC claims it doesn’t exist (I know, it sounds not real, but it's true), insurance doesn’t pay for most of the treatments. Plus there’s an array of very expensive specialty supplements which, of course, I pay for out of pocket.

What this means is that a lot of what I’m working for is to pay off my medical bills. Thankfully, I’ve managed to stay mostly on top of them, but as you can imagine, it’s not a very inspiring reason to work.

Blue hour in Washington, DC

Blue hour in Washington, DC, where I currently rest my head.

This means that I’ve had to take on more sponsored content than I would like, which is not the direction I ultimately wanted to take this website. I want this blog to be a place where I can share some of my most prized memories. I want it to be a source of motivation for those who want to do something extraordinary with their lives.

And while I have a bountiful backlog of travel blog posts like these, it means that, for now, they will be a little fewer and further between.

I am working tirelessly to adjust my monetization model of this site and to keep it financially feasible for me without bombarding you with sponsored articles, but during that transition, your support on those pieces means the world to me. I’m not kidding when I say that those articles are actually paying my medical bills.

And the more medical bills I pay, the closer I get to being healthy once again. So in this case, mo’ money, less problems.

Thanks, and All That Other Mushy Stuff

This has been a trying year for me, and to most of my friends, I’ve pretty much dropped off the face of the planet. Though I can’t reach out to everyone individually, I thank you all, friends and readers alike, for understanding. I hope you’ll be waiting for me on the other side.

Though it’s hard to stay positive during these times (and to see through the brain fog) I try to keep an eye on the good things that will come from this trial. I know that I’m going to be a very different person when I emerge on the other side, having dealt with the pain and trauma that’s associated with a long-term illness like this one. In some respects, I’m afraid of who that person is going to be because I’m not sure it’s going to be a person that I’m happy with.

But alas, our journey to self-acceptance is never complete.

I am, however, cognizant of and grateful for the fact that this is a good time for me to continue to build and grow my professional portfolio. I spend a lot of time right now learning (trying, anyway) and growing and building my business. My goal is to create something now that will allow me to live out a full and passionate life when this is all over.

To be honest, I don’t quite know what “over” looks like…but I’m chasing it.

I want to be in control of this thing. I want the clarity of mind and the strength of purpose I need to live the life I want, and do the job I love.

And Lyme is not going to take that away from me.

In the meantime, I’ve still got a ways to go, but I’m making progress, and I have some really good doctors on my side.

Despite being grounded for now, my head and my heart are forever on the road, and one day, my body will be there again too. I know that if I will it strongly enough, it has to come true.

I’m not giving myself any other option. I refuse to settle. I’m here to fight.


READ NEXT: 50 Lessons I’ve Learned After 5 Years of Traveling

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