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.

Table of Contents

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.


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.

Mars-like terrain of Landmannalaugar

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. Biology was never my strong suit, but 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.

Taking a year off to explore the world before diving into school again is OK! Traveling is a different classroom.
Taking a year off to explore the world before diving into school again is OK! Traveling is a different classroom.

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.

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 blog posts, 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: Best Travel Tips I’ve Learned After 10 Years of Traveling

About the Author

Jeremy Scott Foster

Jeremy Scott Foster is an adventure-junkie, gear expert and travel photographer based in Southern California. Previously nomadic, he’s been to ~50 countries and loves spending time outdoors. You can usually find him on the trail, on the road, jumping from bridges or hustling on his laptop working to produce the best travel and outdoors content today.
  1. Dude, that sounds like it totally sucks. Stoked to hear you’re in a more positive space now though and ready to tackle the challenges ahead.
    Also big kudos for pressing “publish” and sharing this, hopefully it’ll bring some much needed attention to something many people (myself included!) have no idea about!

    …hopefully see you on the road sometime soon!

    1. It totally sucks, indeed. I’m definitely making progress and trying to remain positive, which is hard, but the only way. Hope to see you out there somewhere!

  2. Wow. What a struggle Jeremy. I’m so sorry to hear about you going through this! Chronic illness is such a struggle especially when it’s not something visible. I’ve had one chronic illness finally get better after over 10 years of dealing with it only for it to be followed by something new and equally uncomfortable/unknown and difficult to talk about it. It sucks and it’s hard to talk about how it makes our lifestyle a challenge without sounding like a complete whinger. I hope things start to turn a corner with you and you can get back to a new normal.

    1. Well the hard part, for me at least, is not letting it become a part of my identity. I don’t want to be “that guy who got sick,” nor do I want to identify as a sick person, because long-term illness can have that effect. I’m sorry you’ve had to go through the rigamarole of chronic illness, as well. It’s not fun, and it definitely isn’t easy.

  3. I’m sure I made the same comment the last time you wrote about the disease, but really. People need to hear more about this. Like you said, it’s an invisible disease. Keep on fighting the good fight!

  4. Bro, can’t say much more than this bloody sucks, but keep fighting and we’ll catch you on the road when you’re ready. Fuck Lyme Disease!

  5. Hello Jeremy. Your blog has been sent to me by a friend who also has Lyme. Until then I was fairly ignorant of how it affects people. You are truly an inspiration. I haven’t got words to express how I feel about you and my friend, but I’m thinking of you both a lot more now. I’m a traveller too, just as my friend is. Fight the good fight. A big hug from me.

    1. Thank you so much, Glen. If you can better understand what your friend is going through, then you will be able to better relate with them and show them the type of compassion they need. And if I helped in doing that, then I’ve accomplished my goal. Hug received!

  6. Jeremy, I’m so sorry to hear about what you’ve been going through; it sounds like a living hell and I hope so much you’re on your way out of it now. You’ve been a genuine inspiration to me over the last year, and I still really appreciate all the emails from you filled with advice about TEFL, China and life in general. Thank you also for being part of the collaborative article for Exploration when you were likely feeling extremely ill at the time. You’re a great writer, eternally honest (which is what took me to your site and inspired me to contact you in the first place) and I’m so pleased we’ve had the chance to work together in some capacity. If you need any help promoting the articles that will eventually pay your bills and help you to get better, you know where I am. Hope you feel better soon, Amy (:

    1. Amy! Hey! Thank you so much for the words of encouragement and support. At a time when I wasn’t able to fulfill my dreams, the least I could do was help someone else fulfill theirs. I hope I helped 🙂

  7. Jeremy,

    I’ve followed you for a few years now and you are one brave man. Thank you for educating us all on this terrible disease and I sincerely hope your health continues to improve and am sending positive energy your way! You may be in the valley of life now but you’ll be standing on that mountain again soon. Hang in there! I’ll keep following. P.S. I’m leaving Asia this summer after living here three years and moving back to Europe!! ~ All the best, Lisa ♡

    1. Hey Lisa! Thank you so much for all the support over the years, and especially now. The mountain isn’t my goal—it’s the sky—and I’ll get there soon. It will just take a little while 😉 Good luck with your move back to Europe—I hope the reverse culture shock doesn’t hit you too hard!

  8. Jeremy, thanks for sharing something so personal! I can only imagine how nearly impossible Lyme Disease makes both traveling and writing. Hope to hear that you keep making progress, and cheers to using your voice!

    1. Thanks for your help writing it, Alecia. Couldn’t have turned it into the piece that it is without you x

  9. Please take a look at a breathing exercise called Holographic Breathing. The chap who developed it found that it helped him enormously with his Lyme Disease.

  10. Hey Jeremy,
    I don’t actually know how to react to your post because I do know that no words can help you feel well again, but, believe it or not, I do know how you feel and won’t fall asleep without writing you this. Let me try to put a long story short and share a few words. I’m just a random guy from the Czech Republic who loves traveling and blogging. I’ve started to work on my website and blogs (the health condition is the reason why I still haven’t compelted theme) and my dream is to travel the world. And that’s how I actually ran into your web. I have to admit that I never really managed to read it before, but yesterday I was looking for some inspiration and went to your blog again. The heading of your latest post literally hit my eyes. Since September 2015, so acutally pretty much as many days as you, I’ve been going to something …well in fact something pretty much the same. I never got any clear answer on what’s has been going on with me and even though I’ve read lots of similar stories in the meantime and have been suspicious about lyme disease, I never really admitted to myself that this is the real cause of my permanent problems. When your story landed on my screen, I started to believe that this is just it…. I don’t have any magic words to say and know this is hard, but I do believe it is possible to have the life back! 🙂 If you feel like, I will be interested in and happy to share the experince, perhaps advice and support with you! I do wish you to get well very soon. See you around the world 🙂 All the best! Jirka

    1. Thanks so much, Jirka, and I’m so sorry to hear that you’ve had to deal with this as well. Have you managed to seek out treatment? There are a number of good Lyme doctors in Europe. Let me know if you need help finding them!

  11. I have a few q for you about the Lyme and the headaches as I’m doing a bit of research on the matter. Can you recall the day the headaches began? Over the 3 days before the headaches began do you recall any events? Tic bite, mosquito bite, air travel, train travel, exotic foods, etc.? I had a deer tic bite around the time my headaches began but I could swear I had the headaches the day before. My Lyme tests were negative. I know this is not definitive. My headaches sound a lot like yours. I don’t have joint pain except related to some chronic injuries. But if you can pinpoint the day the headaches began, I’d be interested to look at potential triggers, tic bite or otherwise.

    1. Hey Lawrence,

      Honestly, it’s hard to say. The symptoms all came on at various stages and I can’t really pinpoint what happened, when. Wish I could be more helpful!

      1. I previously asked about possible inciting factors around the time the Lyme symptoms began. In my case I developed headaches within 2 days of a tick bite. I can remember the exact day the headaches began. I was on a train. The day before that I was on a plane. The night before I slept on the floor in penn station NYC. My Lyme workup was negative but the tests don’t always show it. Coinfections were not tested for. So Lyme and confections are in the differential diagnosis. But I also wonder about the plane flight. I have heard of potential toxins that can get into the air system if the plane. Something found in one of the lubricants has been implicated. Flight crews have on occasion had such exposures causing a flight to divert. In my case, the headaches began the day after a flight. I have had the same headache 4 1/2 years. It never goes away. Aside from a short course of doxycycline I have not had other treatment for Lyme. Had a non contrast mri that was negative. So still no explanation for the headaches.

  12. Big Hugs! I love reading your work, and feel for you. I’ve had diagnosed chronic illness in the past, so I understand part of what you were going through. One of my friends has Lyme as well, so I’ve seen someone go down the same path that you have, and it’s not fun. If you’re taking requests for writing, I’d love to hear about how you’re being treated for Lyme. I know with my friend, it’s been a mish-mash of treatments, some that have worked, and some that haven’t. I’m looking forward to some fresh articles from you when you get back on your feet!

    1. Hey Bryan—thanks so much for the support. I definitely plan to write a little more about my actual treatment plan and what has worked for me. But what works for me won’t work for everybody, as the manifestations of the disease are so different depending on the person. I need to get a little better first, and then I’ll be writing all about it!

  13. Rest assured I will be screaming FARRRK! if I hear someone has Lyme. I know a friend who has it and it is no joke. I wish you a speedy recovery.

    1. Cheers, James. I really appreciate that 🙂 It’s no joke, indeed! Most people don’t know it, so I’m glad I’ve been able to raise some awareness about how bad it really is.

  14. So much love for you dude! Thank you so much for opening up to us all, in such a powerful and intimate way. Your article was both educational and emotional. And I am going to share this with the two other friends I have that are living with Lyme, I know they will be able to relate and maybe open up a bit themselves.

    And I am really looking forward to the next time we hang!

  15. Jeremy, I wish you well on your journey. I’ve been dealing with Lyme since 2014. I also had Babesia. I just got retested and am happy to say I tested negative for Babesia. I’ve been feeling great for months. Being free of babesia could explain why. Such a horrible Coinfection. Unfortunately, I still have Lyme. I plan to fight and beat it. The tricky thing with Lyme is you have to fight the coinfections first before you can rid the Lyme. I gave my body a rest for a couple months, now I’m back on potent herbs. Toward the end of four or five months on strong herbs I plan to take high dose of antibiotics for a month. Detoxing is so important. Cranial sacro massage and chiropractor was extremely helpful for headaches and mental fatigue. Wish you well on the long fight. You will get through it!

  16. Hope you get well soon Jeremy. Everything is going to be fine. Looking forward to more of your thoughts.

  17. Wow, did this ever hit the nail on the head, and drive a stake through my heart! Your story is identical to my boyfriend’s, and it’s the most heartbreaking and frustrating misunderstood illness. It’s really hard for me as well, but this has me in tears; reminding myself that I need to dig even deeper for more patience and more hope.
    Love & Light,

    1. Being in a relationship with someone who has Lyme is so hard. I was in a relationship for almost a year, and not for a lack of trying, it didn’t work. Patience and support are the two best things you can provide. Stay strong <3

  18. great post to help others understand that a chronic illness can’t be seen but wracks havoc. I finally found a functional doctor to help me with many of the same issues as you. Like you said Lyme is hard to confirm and treatment is a roadmap of bloodwork and supplements most not covered by insurance and puts a dent in the travel budget. The brain fog is starting to lift now with the supplements.
    My travels have altered a bit now with more spa/unplanned days to relax.
    The hardest part is when friends ask me to do something and I have to decline – they don’t understand – I’ll need to share this with them

    1. Hey Suzanne,

      Sounds like you know the struggle all too well. Good luck to you, and rest as much as you can—you need it!

  19. Wow! I really love reading your post, Excellent Jeremy and wonderful how you share this with your audience.

  20. Wow. I also taught English in China, and met my husband while he was doing the same thing. And now we both have chronic and active Lyme, Babesia, Bartonella and I have a whole massive load of parasites. Your article was poignant and so well-written. One of the best articles on the Lyme experience I’ve ever read. Thank you for sharing. I’ve started the LDI treatment protocol I wish I could say it was going well–but I am choosing to remain hopeful!

    1. Hey Karrie,

      I tried the LDI protocol for a number of months but saw very little progress. I think the best approach is to knock the little f*ckers out like a Mack truck—hit them hard. Keep me posted on how you’re doing!

      1. First LDI attempt about two months ago knocked me down so hard my doctor is now sending me to another doctor to have a number of sessions with a special machine to have my blood oxygenated and UV lit and something else before I go back to trying LDI. My immune system is really struggling and it seems to be the biggest problem right now. Thanks again for helping to spread awareness for this disease!

  21. Hello Jeremy! Have you ever considered that you have also Chronic fatigue syndrome, because Chronic Lyme Disease and Chronic Fatigue syndrome are very similar?

    1. Hey Matej—I have considered it. Lyme Disease is often misdiagnosed as Chronic Fatigue Syndrome, actually. I can assure you that, in my case, it’s Lyme Disease. I appreciate your concern!

  22. Hey Jeremy, I found this post through Adventurous Kate and I am so happy I did. I am a fellow Lyme/Bart sufferer (12 years and counting now…) and this is one of the best pieces I’ve read that truly portrays this awful disease. It’s hell to go through and affects every part of your life. Treatment is long and difficult and a lot of times hit or miss, and there is barely any research being done to find a cure. I’ve followed your travels for a while now and even though it breaks my heart you have to deal with this, I am so glad you’ve decided to speak out about Lyme and raise awareness. I wish you all the best and hopefully a speedy remission. Good luck! xx

  23. So recognisable… unfortunately. Brimming tears when you got to the part of not being able to travel so much anymore. Its the radiation for me. Feel it clipped my wings and for years I stubbornly carried on while it got worse and worse. Good on you for making money this way to pay your bills. People have no idea what the cost is, this is generalising, I know but Lyme is such a lonely road and takes so much away. You state that people don’t die of Lyme, but there is a lot of suicide amongst Lyme patients. The US support sites have info on that. On a positive note, curiosity and bloody mindedness are qualities that will get us there, where ever that is. Go well. And thank you!

  24. I live in Australia where Lyme disease is not recognised at all. I’ve been chronically ill almost my whole life after being bitten by a tick when I was only 6 years old, after years of not knowing the cause of my invisible illness I was diagnosed only 4 years ago with Lyme (or a possible Australian equivalent they haven’t studied enough on). I’ve spent my whole life dealing with scepticism from people regarding my health so I’ve not been brave enough to be open about Lyme through fear of not being believed and having to deal with the emotional disappointment from not being supported. I understand what you mean about the “C word” without taking away from anyone who’s experienced the hell of Cancer, it’s just tough not being recognised or acknowledged. Congratulations on being brave enough to be so public with your struggles Jeremy.

  25. Hi, thank you thought I was just completely nuts.

    Its,been a year in a half when the blood work came back positive for lyme. A second and a third also positive.

    Where can I get the help I truly know I need.

  26. wow. you have put everything i feel everyday into words. i recently have figured out i have been living with lyme disease for about 3 years now.. thank you so much for this..i am going to share with my friends so they can understand more about this illness. it feels so amazing to read that people feel the same as me- no one understands. i hope you are doing better and i wish the best for you

  27. Hey jeremy, my name is abraham bendayan. Im a big fan of your work I aspire to be a world traveler someday aswell.
    My mother had been suffering with lyme for over a year now, and I came across this article. This article along with my mothers struggle has inspired me to write a petition to the CDC. If I can have your help promoting this it would mean the world!

    Here is the link:

    And here is my email: [email protected]

    Good luck to you!

  28. Love your words mate.

    This has resonated on so many levels. As an early 30’s (ex-) global gallivanter that most probably picked this up in Norway, your Lyme decline is super similar to my own – the confusing social change, the cognitive decline, the fall from grace… the accompanying guilt of postponing another global rendezvous… the guilt dissipating as you realise you only have enough energy and focus for yourself as you knuckle down in a fight for existence. You have nailed it, nailed it all!

    A massive pat on the back for sustaining a writing practice and continuing to add value across the board to your subscribers.

    Hopefully the same research abilities and drive that helped you build your business has got you to a point where you can start to toy with the idea of a recovery.

    On the days where the mental RAM allows the novelty of introspection, I oft wonder just who and what I will be when this wave that has dumped us finally let’s me come up for a breath of fresh air… is going to be interesting – but my sneaking suspicion is that even though the body will still be mending and early morning yoga has replaced drunken late night swims in the Balkans – I’ll be the exact same fundamental individual, perhaps but with an extra layer of empathy and awareness, where ego once was.

    Either way..hopefully the is still room for a few more Scandinavian Summers!

    As I have shared your article with friends and family – Besides words of appreciation for the way you have so well articulated the practicalities of someone in this situation, I thought I’d mention, that a nice puzzle piece for me at the moment has been consulting with Bob Miller via Skype (at Tree of Life, PA) for some work on the nutrigenetic side of things (search Bob Miller Lyme and you’ll find a podcast or two) as an adjuct to other treatment.

    Cheers mate, Mat

  29. Beautiful description. My background is working as a nurse (but not since Bb, Bab, Bart, +++) and I am livid at the continued ignorance in the medical community which stems from the politics….Plum Island, Fort Dietrich, CDC, NIH, DOD, ISDA, other researchers (Yale, Hopkins), or anyone wanting to make a buck and going about it by forcing infections and limiting treatment onto world citizens. If anyone doubts the Illuminati is not part of this, maybe closer inspection of utube vids on is needed!

  30. Please check out this info, there’s also a book about this Lyme-protocol on Amazon and a yahoo-health-group:

  31. Ha- I googled ‘chronic Lyme scared to travel’ and your blog post was one of the top results. And easily the most accurate description of Lyme as I’ve come to know it… Thank you for telling your story. I still haven’t been able to tell my tale to people outside those who witnessed my decline into the abyss and now my fight back out. As you well know, people have no clue for looking at you. Anyway, thank you. I’m still scared to travel, however your blog reminded me that it’s completely understandable as to why!
    Thankfully, the simple pleasures that accompany being still are a magnificent journey as well.
    Hope you’re that much further along in health and heartiness from the time your post was written.

  32. Suck city. Chronic illness or disease is the worst. I don’t have lyme I have endometriosis but it’s truly hell some days. Very similar to what you describe that most people would find difficult to even live with. And yet what choice do we have. I’ll be thinking of you. And if there’s every work I can send your way to help, I will.

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