Getting a Grip on Lyme Disease


Even though deer ticks (Ixodes scapularis) (two far right) are much smaller than wood ticks (Dermacentor variabilis) (two far left and top right) , they have much stronger mouthparts to hold on to their victim's skin. Bernard Lynch/Getty Images

July marks the high season for Lyme disease. If you're in an area of the United States where Lyme is inclined to fester — the mid-Atlantic and northeastern regions of the country mainly, but it's in the north central part of the country, too, and spreading — this time of year might make you a little nervous about being around all those nasty, bitey little ticks that carry the disease.

And news coming from the Centers for Disease Control sounds awful grim. The number of confirmed cases of Lyme disease in the U.S. has more than doubled since 1997, (the most recent year for final figures is 2017) and cases increased 17 percent between 2016 and 2017 alone. While cases used to be mostly isolated to the Northeast, now the CDC considers half of the counties in the United States high-risk for Lyme disease. Did we say the news sounded grim?

The thing is ... take a breath. Calm down. Lyme disease, first identified in the U.S. in the 1970s, is not particularly mysterious or anywhere close to untreatable, despite the horror stories that you may have heard or those message boards — gasp! — that you've read on the internet.

"The problem is that there are a lot of people that think they have Lyme disease that actually haven't," Phillip Baker, the executive director of the American Lyme Disease Foundation, says. "That's a problem."

Lyme disease should not be taken lightly. If you think you may have it,you need to see a doctor. The sooner, as with any sickness, the better. By some estimates, somewhere around 300,000 possible cases of it are diagnosed every year.

But the vast majority of those cases — this is important to remember for the nervous among us — are handled with a simple round of oral antibiotics. If caught early, especially, people recover quickly and completely.

"I don't want to minimize it. Lyme disease is a serious disease. It's important that people that have it get diagnosed properly and treated," Baker says. "But it's not something that's impossible to handle. It's very manageable. It's not an infection that's difficult to treat. In fact, nine times out of 10, if it's diagnosed correctly and treated correctly, people don't have any problems."

What Is Lyme Disease?

Simply put, Lyme disease is an infection caused by the bacterium Borrelia burgdorferi, which is transmitted through those tiny, bitey blacklegged ticks. It's often characterized by symptoms like fatigue, headache, fever and, tellingly, an expanding skin rash, erythema migrans (EM), that normally looks circular with a "bulls-eye" in the middle. The rash usually pops up anywhere from three to 30 days after a tick bite; the average time is about a week.

The ticks latch on to you and feed on your blood during the late spring and summer months (July!). The little buggers usually nest in hard-to-see places, like in the hair of your scalp, in your armpits and (oof) in your down-there areas. Ticks normally have to be attached for 36 to 48 hours, or even longer, to transmit B. burgdorferi, which is why it's a good idea to check yourself immediately and thoroughly when you've been in areas where ticks hang out.

If Lyme disease goes untreated and gets into later stages — weeks to months or even more after the bite — it can cause things like a temporary facial paralysis or severe swelling and arthritis in a joint. Heart palpitations, which happens when the bacteria invades the heart, are rare, occurring in 1 percent of reported cases of Lyme disease. Other severe symptoms are possible.

Still, even then, treatment is generally very effective.

By the way, you can't transmit Lyme disease through sex or kissing or holding hands. Nor can you pass it through breast milk.

Lyme disease is often characterized by symptoms like fatigue, headache, fever and, an expanding skin rash, that normally looks circular with a "bullseye" in the middle.
Wikimedia Commons/CC BY-SA 3.0

Diagnosing Lyme

The problem with diagnosing Lyme disease is that it involves symptoms that are common to many other illnesses. Headache? Fever? Fatigue? Soreness? That could be anything, and that makes getting the correct diagnosis that much more critical.

The key to diagnosis may be the EM rash (which occurs in up to 90 percent of Lyme disease cases). If you see that — remember, it usually pops up, on average, about a week after you've been bitten — especially if you've been someplace where a tick might have nailed you, see a doctor and let him or her make the call on where to go from there. Even if you don't have the rash, there are times you might think about heading to a physician. From the American Lyme Disease Foundation:

If you live in an endemic area [where Lyme disease is prevalent], have symptoms consistent with early LD and suspect recent exposure to a tick, present your suspicion to your doctor so that he or she may make a more informed diagnosis.

A diagnosis is very difficult to make on symptoms alone, so blood tests may be helpful, though they also can be tricky (and, in some circles, controversial, too). It takes a while for humans to produce the antibodies that are measured by a blood test, so if you're tested too soon, you might get a negative result even if you're infected. And the first test sometimes can come up false-positive, too.

That's why experts, and the Centers for Disease Control and Protection (CDC), call for a two-tiered test to confirm diagnosis; if the first test is positive, doctors sometimes will call for a different type of test (a Western blot test), which identifies specific classes of the antibody that your body is producing.

It's important to note here that some patient advocate groups are not very trusting of the tests or the guidelines on how Lyme disease should be treated.

"There's so much misinformation about there. That's why I do what I do," says Baker, who spent more than 30 years as a research scientist at the National Institutes of Health, many of them involved with Lyme disease. "You can't go by symptoms alone to diagnose Lyme disease. There are at least 250 or 260 different medical conditions that have symptoms that are almost what people see with Lyme disease.

"What you need are reliable, objective laboratory tests to make the diagnosis. [The tests for Lyme disease] are very good ... very reliable tests."

Each dot represents one case of Lyme disease and is placed randomly in the patient’s county of residence.
CDC

Treating Lyme Disease

Once a positive diagnosis is made for Lyme disease, treatment is relatively simple and straightforward, usually involving an oral antibiotic (typically doxycycline) for 14 to 21 days. Relief from symptoms often comes within days of starting treatment. Late-stage Lyme disease — defined as weeks, months or years after the bite — may call for intravenous antibiotics. These treatments do the trick for most people, though if Lyme isn't caught until the late stages, it can do lasting damage.

Some affected patients report continuing symptoms even after treatment, what is sometimes called "chronic" Lyme disease. It's the most-debated topic in the Lyme disease community.

Most experts and studies don't recognize a "chronic" form of the disease; the antibiotics, they say, rid the body of the infection. Continuing symptoms — what's known as Post-Treatment Lyme Disease Syndrome (PTLDS) — are believed to be the result of something else. From the CDC:

Some experts believe that Borreliaburgdorferi can trigger an "auto-immune" response causing symptoms that last well after the infection itself is gone. Auto-immune responses are known to occur following other infections, including campylobacter (Guillain-Barré syndrome), chlamydia (Reiter's syndrome), and strep throat (rheumatic heart disease).

Despite varying views on diagnosis and treatment, despite the argument over whether Lyme disease can become chronically debilitating or if it just turns into some other sickness, it's important to remember this: Lyme disease, especially if caught early — and a large part of that is awareness by the person who may be infected — is eminently treatable.

That should make everyone breathe a little easier.

The Last Word: Prevention

The best way to deal with Lyme disease, of course, is to not get it in the first place:

  • Avoid ticks by staying away from especially woody or leafy spots in late spring or summer. If you live in a tick-heavy area or an area of the country known for Lyme disease, be especially aware.
  • When outdoors, use insect repellents like DEET, and treat your clothes and footwear with the insecticide permethrin. (Though, interestingly, deer ticks are arachnids, not insects.)
  • Once you come indoors, check your clothes and footwear so you're not carrying ticks into the house.
  • Shower as soon as you can after possible exposure to ticks, and check all over your body. Check the kids and pets, too. Remember, it generally takes at least 36 hours of blood sucking for a tick to transmit the bacterium to you. If you catch a tick before it gets too settled, you can nip Lyme disease in the bud.