Alec Baldwin is the latest celebrity to speak publicly about Lyme disease, sharing his personal story over the weekend at a benefit for the Bay Area Lyme Foundation. The actor and frequent Saturday Night Live guest told a crowd in Portola Valley, California that he suffered from Lyme disease symptoms every August for five years.
“The first time was the worst of all,” Baldwin said, describing “black lung, flu-like symptoms, sweating to death in my bed.” He remembered thinking at the time, “I’m not going to live,” and “I’m going to die of Lyme disease.”
It’s not surprising that Baldwin and other stars — including Avril Lavigne, Yolanda Foster, and Ally Hilfiger — have spoken out about Lyme disease, considering how common the tick-borne illness really is. Every year, about 30,000 Lyme disease cases are reported to the Centers for Disease Control and Prevention (CDC), although some CDC research has suggested that the number of people actually diagnosed each year may be closer to 300,000.
The true number of Lyme disease cases is likely somewhere in between, says Larry Zemel, MD, head of rheumatology at Connecticut Children’s Medical Center. (Zemel has not treated Baldwin, but has more than 35 years of experience diagnosing and providing care for Lyme disease patients.)
Luckily, many people are diagnosed and treated early, and they don’t experience debilitating or long-term symptoms. “For most people, antibiotics are extremely effective,” says Zemel. Still, there are a lot of misconceptions and confusion about the disease. Here’s what you should know.
What is Lyme disease?
Lyme disease is a bacterial infection transmitted by deer ticks. You can get Lyme disease if an infected tick bites you and is attached to your skin for more than a day, although symptoms don’t usually develop for a few days or weeks.
Many people with Lyme disease develop a “bullseye” red rash with a white circle in the middle, but not all do—or the rash could be hidden somewhere on the body, like the scalp. Other symptoms of early Lyme disease include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes.
Once symptoms develop, doctors can perform a blood test to see if Lyme disease antibodies are present in the body. (Testing too early can result in false negatives, if the antibodies haven’t had time to develop.) This indicates that an infection has occurred, and that medication is likely to help.
At this stage, people usually receive a two- to three-week course of oral antibiotics. “This is essentially curative for the vast majority of patients,” says Zemel. “It would be extremely rare for someone who’s treated early to continue to have symptoms several years later.”
What about “chronic” Lyme disease?
People who are not diagnosed right away can suffer from more severe Lyme disease symptoms, including arthritis, joint swelling, severe headaches, and memory problems. A longer course of intravenous antibiotics can often improve these symptoms, but some people do suffer permanent nerve, joint, or neurological damage.
A small number of people also continue to experience pain and other symptoms for six months or longer after being treated for Lyme disease, even when they’re diagnosed early. Although this is sometimes described as “chronic Lyme disease,” its proper name is Post-treatment Lyme Disease Syndrome, or PTLSD.
From the portion of Baldwin’s speech that’s been reported in the media, it’s not clear whether he continued to experience symptoms after being treated, or if his condition went undiagnosed for years. Zemel says symptoms that reoccur at the same time every year, as Baldwin described, are not typical, “unless he was getting bit by a new tick every August, which is highly unlikely.”
Zemel cautions that while some doctors will diagnose Lyme disease without a positive blood test, these methods are not supported by science or backed by the CDC or the National Institutes of Health. “A lot of people think they have Lyme disease when the evidence suggests that they don’t,” he says.
While he can’t speculate on Baldwin’s case, he says he’s glad the actor is speaking up and helping to raise money for more research on the disease.
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How to protect yourself
Lyme disease has been reported in every state, but the Northeast, mid-Atlantic, and upper Midwest pose the greatest risk. In these regions especially, “Lyme disease is a real threat, and we do recommend vigilance,” says Zemel.
When spending time in wooded or grassy areas, wearing insect repellant that contains 20% or more DEET, picaridin, or IR3535 can provide some protection against ticks. Clothing can also be treated with insect-repellant products containing the chemical permethrin, and some clothes can be purchased pre-treated.
One of the easiest preventive strategies, says Zemel, is regular tick checks. “When you come inside or at the end of the day, check all over your body and your children’s bodies for ticks,” he says. “If you can remove a tick within 24 hours of attachment, most of us feel that would be adequate in preventing Lyme disease from that particular tick.”
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If you discover a tick on yourself or your child that’s probably been attached for more than 24 hours—but less than 72 hours—tell your doctor. Depending on the type of tick and the severity of Lyme disease where you live, he or she may recommend a single dose of antibiotics to prevent any potential infection. (Zemel provides this option for adults and children 8 and older.)
Saving a tick after you remove it may be helpful, in case your doctor recommends having it tested for disease. (In addition to Lyme disease, ticks can also carry bacteria and toxins that cause Powassan virus, Rocky Mountain Spotted Fever, tick paralysis, and other illnesses.) And whether you know you’ve been bit or not, tell your doctor if you or your child develops a strange rash or any symptoms that could indicate a tick-borne disease.
“I love the outdoors, so I would never tell people to stay indoors for fear of Lyme disease,” says Zemel. “Go outside, but be careful. Do tick checks, and if you do pull a tick off of you, you may be able to take a preventive dose of antibiotics. And worse case scenario? If you come down with early Lyme disease within several weeks, antibiotics are often curative.”