[Heads up: Atomish will be on a hiatus for a bit as I have a new baby coming any day now, and I have another writing project I’m working on with other actual people that I’m pretty excited about. Hope to post again later this summer. If you want to make sure you get pinged when new posts come out you can scroll down past the end of this article and enter your email in the ‘Follow This Blog’ box.]
One summer day in 1998, while hiking in the woods with a couple friends, I noticed a strange looking bite on my arm. It was faint but appeared to have the form of a central dot surrounded by a small halo. Some might call it a bullseye. A quick google search (or ‘Lycos’ search in the parlance of 1998) of ‘symptoms:bullseye’ reveals the most common, or at least most potentially serious culprit: Lyme disease.
On any typical day, the appearance of a bullseye wouldn’t be too concerning to someone raised in the mid-atlantic states. I knew the drill. A quick trip to the doctor’s the next day, a course of antibiotics and within a week or so I’d be Lyme free, if I’d even had Lyme at all. But this was not a typical day – it was a Friday, and even more importantly, it was the day before I was scheduled to leave on a month long trip to Ecuador with a good friend.
By the time I’d come home later that day my father had already convinced my doctor to squeeze me in for an appointment early the next morning. From the beginning my father had been slightly nervous about my planned travels to a third world country. Just the week before he’d printed out what seemed (by heft anyways) to be a hundred pages of information about Ecuador from the State Department’s website, replete with travel warnings and facts for anyone concerned about kidnappings or the active military standoff along the Ecuadorian-Peruvian border. Now I had seen his concerns and raised him an infectious disease. If I was still determined to go to that God forsaken country, he was going to be damn sure I at least did so with a heavy dose of doxycycline running through my veins.
On Saturday morning I saw the doctor at 7:30am, picked up a prescription 30 minutes later and was on a plane to Ecuador an hour or so later. Thanks to the bottle of blue pills tucked away in my carry on bags I never felt a single symptom beyond the rash.
A look at wikipedia confirms that it is “Lyme disease” and not “Lyme’s Disease” as I’d always thought. Lyme wasn’t a person, but a place, or two places: the towns of Lyme and Old Lyme in Connecticut. Historical descriptions of Lyme-like symptoms go back hundreds of years, but it was the more recent outbreak of the disease in Lyme and Old Lyme in 1975 that finally gave the disease a name.
I can’t help but wonder: what it would be like to have your town be forever connected with some awful disease, and one associated with a tiny blood sucking bug at that? My hometown was Laurel, Maryland and I can only imagine the shame I’d feel if some mosquito born disease that caused blindness in children and puppies was called ‘Laurel Disease’.
Compare the etymology of ‘Lyme disease’ to the historical origin of the name ‘Ebola virus’. Ebola was first identified in the town of Yambuku in the Republic of the Congo by one Peter Piot. But being an apparently decent fellow, Piot decided to name the disease after the Ebola River, which was 60 miles from Yambuku, so as to avoid stigmatizing the town. Now next to Piot, the person who first coined the term ‘Lyme disease’ looks like a real asshole. What, no nearby rivers you could have used to deflect the shame even just a bit from those poor Lyme-ians?
I could fill an entire post on the fascinating history of Lyme Disease, going back to the earliest descriptions of its symptoms in Scotland in 1764. Instead, though, I’d like to move on to its “pathophysiology”, which I didn’t even know was a thing until looking up Lyme Disease on the internet.
Lyme is caused, at least in America, by the bacteria Borrelia burgdoferi sensu stricto, which I will hereafter refer to as B. burgdorferi (or, just B-burg, as the kids would call it, if any kids were ever interested in Snapchatting about pathophysiology). The bacteria is part of a larger class of bacteria called spirochetes. The Wiki article confusingly switches back and forth between referring to it as ‘the bacteria’ and ‘the spirochetes’. I’m 90% sure they are the same thing. Maybe 80%…
In any case, this bacteria is a nasty son-of-a-bitch. This is not one of those single-minded bacteria that causes a clear and localized problem. It can lead to all kinds of issues in all kinds of organs. B. Burgdorferi is the Talented Mr. Ripley of bacterial agents.
First there is the rash at the site where you are bitten. Turns out that tick that had the Chutzpah to deposit these little bacteria into you took it one step further by providing some sweet immunosuppressive proteins with its saliva. This basically gives the bacteria a head start before your immune system can do anything. At this point it starts dispersing outwardly from the bite along your skin, leaving that bruise colored Target logo in its wake.
Days to weeks after being bitten, the bacteria makes its way on a grand tour of the body: joints, heart, nervous system. In the brain the bacteria can cause something called ‘mild encephalitis’, which may include problems with attention, memory and emotions. I’d hate to see what ‘severe encephalitis’ entails. Lyme can also cause meningitis. And, if you happen to be spared these fun maladies, there is also the possibility of developing something called polyneuropathy that involves shooting pains, numbness and tingling in the hands or feet.
The absolute best/worst Lyme induced pathology listed in the Wiki article is called “frank psychosis”. I had a hard time finding a clear definition for “frank psychosis” online, though I suspect it’s not a good thing, especially since one reference I found says that this psychosis may be misdiagnosed as schizophrenia or bipolar. Is it just a cute way of saying someone has gone psychotic? Cut to the 70 year old psychiatrist in his arm chair explaining to his patient, “What is my diagnosis? If I’m being frank, psychosis.”
As if all this information about Lyme wasn’t crazy enough there is also this: at least a few people have been infected with Lyme via a tick that has bitten them on the cheek. To be clear, one article that included a picture of someone with a tick embedded in their face did clearly say: This is rare. Still, what has to happen for someone to be bitten by a tick on their cheek AND NOT NOTICE FOR AT LEAST 24 HOURS! – since a tick needs to be embedded that long before it can start to infect you. Even if I grant that this person is blind or totally indifferent to how they look and goes days on end with ever seeing anyone else, it’s hard to believe you wouldn’t just stumble across it accidentally with your hands. Maybe it’s me, I must touch my face like 10,000 times a day – but I just can’t believe that actually happened to even one person. And yet I’ve seen it with my own eyes.
The saying goes that ‘once is chance, twice is a coincidence and three times is a pattern.’ And that is all well and good for run-of-the-mill sorts of events. Still there are some events for which even two times would be extremely out of the ordinary. Take for example, being abducted by an alien. Sure, the first time you are beamed up, probed and released back into the wild you might think to yourself, ‘well that is just some poor luck’. But should you find yourself back on that spaceship a second time while an alien slips on a six fingered latex glove you’d be forgiven for skipping right over the whole coincidence thing and concluding that these aliens have it in for you.
So when I found myself, several years after my trip to Ecuador, standing in an airport bathroom in Houston during a layover on my way to Guatemala and examining what had a day before looked like just a bruise, but had now taken on the form of a dark blotchy bullseye, I found myself thinking, as many a multi-time abductee is wont to think, no way is this a coincidence. Clearly there was some mysterious connection between Lyme disease and me traveling to Latin America.
Houston, of course, is still a part of my home country – and common sense would have me consider turning around and heading back to Maryland where getting and being treated for Lyme is like a rite of passage.
Instead, though, I continued on.
I was traveling to Guatemala not with a friend, but with a youth group, with the single-minded mission of helping to paint a children’s hospital in Guatemala City. Surely a hospital, even in such a backwards land as Guatemala, would have access to antibiotics?
The head doctor at the hospital, as it turned out, had been trained in the United States, at Johns Hopkins in Baltimore. Hopkins is just a brief jaunt away from where I grew up and where I’d presumably contracted whatever disease was by this point causing rashes, headaches and a fever. And not only that, but this same doctor had focussed at Hopkins on infections diseases. Lyme was an infectious disease. And so it was that he became my personal savior and I became for him the first recorded case of Lyme disease in Guatemala.
Doctors of course like to have healthy patients. But what they enjoy even more, what really excites them, is observing, for the first time, exotic maladies. With my permission then, this doctor led a train of medical professionals into my exam room as I sat in my boxer shorts, so that they could observe for themselves this strange rash. They pointed at it, compared it with pictures in textbooks, and thanked me for the opportunity to leer at my pasty American thighs.
Then they led me into another room where a nurse stood with a syringe that was comically large. Usually with shots you remember the needle – long or short, fat or thin. Hey doc, what gauge are you using there? What I remember was not the needle, but the contents it conveyed: a juice-box-like quantity of amber liquid. I’m not sure that anything done to me by a medical professional has ever hurt so much. It was the only time in my life where I felt like I was going to pass out from pain.
That afternoon the group left me behind in our sleeping quarters to go galavanting around the Central American countryside. For those few hours I sat shivering in my sleeping bag on a cot, my forehead burning as hot as I’d ever remembered, and half convinced I was on the precipice of dying. If I wasn’t the first case of Lyme found in Guatemala, I would certainly be its first casualty.
I didn’t die on that trip. I actually got better quite quickly. The rest of the trip was spent spackling and painting – for the kids.
As I said goodbye to the doctors and thanked them for treating me, the head doctor handed me a small styrofoam box. “It’s your blood,” he said. He wanted me to take it back to the states and have my own doctor test it for Lyme, since they didn’t actually have the test in Guatemala. I was a little concerned about what customs would think, but I did my duty for medical research and found a way to smuggle it home.
Back in America my doctor took one look at the vials and promptly tossed them out. “I can’t test that,” he said. “It hasn’t been properly preserved.”
And then my doctor went on to explain that he doubted I actually had Lyme. That Lyme didn’t usually cause the high fevers I described and that my symptoms could have been caused by many things. By the interactions of bacteria from two different bites, perhaps.
Perhaps. Or, maybe it wasn’t a bug at all. Maybe, and I’m just tossing out ideas here. Doc, is there anything in the literature about a link between Lyme-like symptoms and traveling to Latin America? Because have I got a case study for you.
Loved it Jesse, as usual! You will be missed on your sabbatical, but you have more important things to do. Good luck!–Uday
i had no idea your symptoms were so scary severe back then. I’m very glad you survived, as are your respective survivors, no doubt 🙂
It seems that medical diagnosis and treatment are fundamentally messy and stochastic – not the reassuring certitude of pristine linear logic .(as useful as logic is otherwise 🙂
Ok so i have 2 problems with this entry… first of all, why is Machu Picchu your main picture? Was there nothing pretty enough in Ecuador to make that cut? Also, it’s “Johns Hopkins” not “John’s Hopkins”… no big deal
Great story/article. I actually laughed out loud at the thought of you standing in your boxers in front of the Guatemalan medical team, as well as the juice box sized syringe they hit you with. And if you’re into diseases/viruses named after towns you should check out Coxsackie… an unfortunate name
Thanks man – always happy for people to point out typos! As for the picture, all the images on this site are from unsplash.com, because they are all “free to use however you damn wish” – so I was too lazy to dig around on the internet for an Ecuadorian specific pic that didn’t have license issues. But maybe I’ll take a quick peek now – you are right, Ecuador is too beautiful not to have its own feature pic.
Now THAT’S a beautiful picture!