Lyme Disease: What You May Not Know

Lyme disease is increasingly growing from a regional concern in the United States to a national crisis.

“We’re seeing it in the United States with more cases in the endemic areas than previously and now a spread into areas that were previously considered unaffected,” said Crystal Barnwell, MD, a board director with the International Lyme and Associated Diseases Society.

Lyme disease—and the ticks that transmit it—have been found in all 50 states and over 80 countries around the world. The Mid-Atlantic represents one of those endemic regions. In Pennsylvania, there was a dramatic increase in cases tracked by the Centers for Disease Control and Prevention (CDC) between 2005 and 2015, while New Jersey hovered near the high end of the spectrum.

“There is some very, very good evidence for global warming creating ongoing tick reproductive cycles, which would increase the prevalence of the organism in human spaces,” Dr. Barnwell said. “And with that, our own spread into previously undisturbed spaces, interrupting those ecosystems.”

How to tell if you’ve been bitten

You probably recognize the “bullseye” rash as an indication of Lyme disease, but did you know that there’s a full spectrum of rashes? Or that a rash doesn’t always appear? You could be experiencing flu-like symptoms, never suspecting you’ve been bitten by a tick.

Making matters even more confusing are the CDC-recommended blood tests for Lyme. A positive result isn’t necessarily a clear indication of the presence of Lyme. Likewise, a negative result isn’t always sufficient proof of its absence. Confused yet?

It’s not uncommon for several weeks to pass before the blood tests produce a positive result. So much, then, comes down to the thoroughness of the doctor’s physical exam and observations of the patient and their recent circumstances.

What to do if you’ve been infected

If you discover a rash, or even the tick itself, see a doctor immediately. (The groin, armpits, and behind the ears are popular hiding spots.) A tick needs 24 hours to transmit the bacteria that causes Lyme, so removing the tick as soon as you find it should dramatically reduce your chances of getting Lyme. But, even once a rash has developed, the path to a full recovery is pretty straightforward, so long as it’s caught early: two weeks of antibiotics (doxycycline or amoxicillin).

The challenge is in diagnosing Lyme disease without a rash or evidence of a tick. When the initial diagnosis is missed, or mislabeled as another ailment, an ambiguous disease becomes even more difficult to read with each day that passes. Lyme can quickly progress to a number of other serious conditions if it goes untreated. It’s what’s known as chronic Lyme disease, and it’s being studied intensely at the moment because so little is known about it.

If you start experiencing a fever, chills, and joint pain—Lyme is referred to as the “summer flu” by some doctors because it’s often confused for that—see a doctor. While not necessarily definitive indications of Lyme, they could be a significant piece of the puzzle. Be sure to let the doctor know if you’ve spent any time outdoors recently.

Should they decide to administer a blood test and it comes back negative, ask to be tested again in a few weeks.