What It’s Like to Get Lyme Disease. Twice.

August 1, 2016
Mislav Marohnić/Flickr Don’t ignore the warning signs of Lyme disease, even if you never found a tick or a tell-tale bullseye rash.

I had my first bout with Lyme disease about a decade ago. This summer I went another round with the unpleasant tick-borne illness. The two experiences highlight several important things everybody should understand about Lyme.

How you get Lyme disease

First a quick backgrounder. Lyme disease is caused by a bacterium (Borrelia burgdorferi) that is transmitted  by infected ticks, which must bite you—and stay attached—for a minimum of 24 hours to transmit the illness. There are many varieties of ticks, several of which can be vectors for the disease, though in the Northeast deer ticks are the primary culprit.

Like all ticks, deer ticks have a three-stage life cycle. Over the course of a year, ticks transform from nearly microscopic larvae to super-tiny nymphs to easily spotted adults.

Of these three life stages, the nymph phase is by far the most likely to transmit Lyme Disease because they are tiny—roughly the size of a poppy seed or the period at the end of this sentence. This makes it difficult to spot them, even once they’re attached to you. Which leads to the next point…

Most people who get Lyme disease never saw the tick that bit them

Both times I got Lyme disease, I did not find a tick on me in the days or weeks before I came down with symptoms, even though I perform regular body checks any time I venture into the Northeast woods. I also became ill in early summer, when tick nymph populations peak. This is almost certainly not a coincidence—the damn nymphs can be really, really hard to spot, especially if they sink in around difficult-to-inspect locations such as the dark crevices below the belt.

So, again, just because you never find a tick does not mean that one didn’t bite you. If you venture into areas where ticks are present (which in the Northeast, is just about anywhere there’s brush, woods, or tall grass), it’s always possible that one of the little bloodsuckers got you.

Lyme Disease symptoms are often non-specific and variable

One of the challenging things about diagnosing Lyme disease is that it can manifest itself in several different ways. Vague, flu-like symptoms are common and can include any combination of fever, aching joints, headaches, and fatigue.

The first time I got Lyme, I was struck down by fever and aching joints and laid up in bed for several days. I quite vividly remember shivering with fever chills beneath a heavy down comforter in the middle of a summer heatwave.

This summer I had neither of those symptoms and instead was struck down with severe, sometimes debilitating, fatigue, along with regular low-grade headaches and occasional nausea.

It felt like I had an endless hangover. I could barely get off the couch at times and my regular activities (bike commuting, playing with the kids) became difficult to impossible. I slept far more than usual, yet never felt rested. The fatigue was also strangely variable. Some days I felt close to normal, while the next day I would again sink down into near-dysfunction.

A rash may—or may not—occur around the bite site

In most cases (70 to 80 percent of infections), a spreading rash (known as an erythema migrans rash) will appear around the bite site in the days that follow infection. It can begin anywhere from three to 30 days after the bite, with an average appearance in about seven days. Sometimes the rash clears centrally from the middle as time goes on, creating the classic manifestation of a so-called “bullseye” rash.

If you find such a rash, it’s a major clue that an infected tick got you. But it’s not a guaranteed symptom and infections often occur without one appearing.

In my case, despite closely monitoring myself once symptoms developed, I never found a rash the times I got sick.

Lyme disease is hard to definitively identify but straightforward to treat

There is no reliable medical test to determine whether or not a patient is infected with Lyme Disease. And because the symptoms can be vague, non-specific, and variable, it is usually only possible to say that patients likely have Lyme based on the available evidence—and to treat accordingly. (A more accurate title for this post would be something like “What It’s Like to Have Probable Lyme Disease. Twice.”)

The good news is that treatment is simple, straightforward, and consists of a two- to three-week round of daily antibiotics. Even better, patients often feel better, fast, once they start taking antibiotics. In my case, I felt radically improved and much better within 48 hours of starting the antibiotics. By the end of the antibiotic cycle, I felt my old self once again.

If you are worried about potential Lyme Disease, DO NOT IGNORE IT.

This is perhaps the biggest risk of Lyme disease—and the one that can cause serious long-term effects.

Here’s the thing: If you are infected with Lyme and do nothing about it, the initial symptoms will eventually diminish. But the bacterium that causes it remains in your body and can cause all kinds of horrible symptoms years later, including chronic arthritis, facial palsy, shooting nerve pains, and heart palpitations. It also becomes much more difficult to treat as time goes on.

If you catch and treat Lyme disease early, however, these long-term risks can be effectively eliminated.

Of course, the best defense against Lyme is to not get bit in the first place. For more on tick repellents and bite prevention, see the links below.


Tick Off: The Most Effective Tick Repellents

Tick Repellents and Other Tick Defenses

Deer Ticks Suck: Three Critical Defenses

Kill Ticks Dead: Treat Your Clothing with Permethrin

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Matt Heid

Equipped blogger Matt Heid is AMC's gear guru: He loves gear and he loves using it in the field. While researching several guidebooks, including AMC's Best Backpacking in New England, he has hiked thousands of miles across New England, California, and Alaska, among other wilderness destinations. He also cycles, climbs, and surfs.