Lyme Disease: The Mysterious U.S. Endemic
Apr 01, 2019
Each year, more than 30,000 cases of Lyme disease are reported to the Centers for Disease Control and Prevention (CDC) by state health departments and the District of Columbia. However, studies suggest the actual number of individuals diagnosed with the disease is closer to 300,000.
Even with these high numbers, a national survey reported nearly 20 percent of individuals surveyed in areas where the disease is common were unaware of the risk. Although Lyme disease can occur nearly anywhere in the United States, CDC historical data maps show it is most prevalent in the Northeast, the Upper Midwest, and along the Pacific Coast.
According to the American Lyme Disease Foundation, Inc. (ALDF), Lyme disease is an infection caused by Borrelia burgdorferi, a type of bacterium called a spirochete that is carried by deer ticks. An infected tick can transfer the bacterium to both the humans and animals it bites. If left untreated, the bacterium travels through the bloodstream, establishes itself in various body tissues, and can cause several symptoms, some of which are severe.
Symptoms of early Lyme disease may present as a flu-like illness with fever, chills, sweats, muscle aches, fatigue, nausea, and joint pain, according to LymeDisease.org. Some patients experience a rash or Bell’s palsy (facial drooping). Although a rash formed into a bull’s-eye shape is considered a characteristic of Lyme disease, LymeDisease.org reports many individuals develop a different kind of Lyme rash – or no rash at all.
Additionally, ALDF reports that as the spirochete continues to spread throughout the body, other symptoms can occur, including severe fatigue, a stiff/aching neck, and peripheral nervous system (PNS) involvement such as tingling or numbness in the extremities can occur.
Although ticks and Lyme disease have been around for thousands of years, the disease was first recognized in the United States only few decades ago. In 1975, a group of children and adults in Lyme, Conn. (and surrounding areas) suffered puzzling and debilitating health issues. Their symptoms included swollen knees, paralysis, skin rashes, headaches, and severe chronic fatigue. Health officials assumed an insect bite caused the disease due to the high frequency of infections that appeared in the warmer months, coupled with the fact the area is near heavily wooded and sparsely settled areas. Despite these assumptions, this initial group of Lyme disease sufferers went years without definite answers.
Scientist Willy Burgdorfer finally established the connection between the disease and the deer tick in 1981, according to the Bay Area Lyme Foundation. The bacterium which causes the disease was named in his honor. In 2012, the CDC first placed Lyme disease in their Top 10 list of notifiable diseases. A notifiable disease is one for which regular, frequent, and timely information regarding individual cases is considered necessary for the prevention and control of the disease.
Today, the illness is one of America’s fastest growing vector-borne infections. Even so, some aspects of Lyme disease remain mysterious to medical communities and the public. Until recently, it hasn’t been widely discussed. Awareness has grown with help from several organizations and the countless celebrities who have gone public with their diagnoses.
Many of these celebrities find themselves in the chronic Lyme category, a stage of the disease with severe symptoms. Potentially debilitating indicators of later-stage Lyme disease may occur weeks, months, or in a few cases, years after a tick bite. The ALDF reports these symptoms include severe headaches, painful arthritis and swelling of joints, cardiac abnormalities, and central nervous system (CNS) involvement leading to cognitive (mental) disorders.
Acute Lyme and Post-Treatment Lyme Disease Syndrome (PTLDS), more commonly known as chronic Lyme, are different stages of the disease, and the symptoms vary greatly. “Acute Lyme refers to the disease that occurs right after initial exposure. That’s when people show up with a fever, muscle pain, rash, flu-like symptoms,” says Mark Soloski, Co-Director for Basic Research, Johns Hopkins Lyme Disease Clinical Research Center. PTLDS is defined as a set of persistent symptoms that happen 6-12 months after acute disease. “These are folks who have not only symptoms, but loss of functioning,” he said. “In simple terms, you can’t get out of bed in the morning.”
Lyme disease is hard to detect since the bacterium which causes the disease is nearly impossible to detect in the bloodstream. Like many other illnesses, the prognosis is best when Lyme disease is diagnosed and treated early. According to Johns Hopkins, most patients with early Lyme disease infection recover with antibiotics and return to their normal state of health. However, they report that a subgroup of patients suffers from ongoing symptoms even after standard antibiotic therapy, leading to PTLDS. PTLDS has been difficult for physicians to diagnose, and even proving its existence has been controversial.
The best defense against tick-borne illness is to avoid contact with ticks. WebMD provides these tips to reduce risks:
- Avoid tick-infested areas, particularly in May, June, and July. Ticks tend to be near the ground, in leaf litter, grasses, bushes, and fallen logs.
- Wear shoes, long pants tucked into socks or pant legs, and long sleeves when outside in areas where there are deer ticks.
- Use insect repellent with 20 percent to 30 percent DEET around your ankles, other areas of bare skin, and clothes.
- Check for ticks especially around the armpits, groin, scalp, belt line, neck and head after being in areas where there may be ticks.
- Remove deer ticks on your skin as soon as you see them.
It’s important to quickly find and remove any ticks that may have latched onto the skin or clothing. If a tick bites the skin, it is crucial to remove it properly and call a health care provider. LymeDisease.org shares how to properly remove a tick:
- Don’t squeeze, twist, or squash it. Don’t burn it with a match or cover it with Vaseline.
- Use fine-point tweezers or a special tick-removing tool. Grasp the tick as close to the skin as possible. If you don’t have tweezers, protect your fingers with a tissue.
- Pull the tick straight out with steady, even pressure.
- Disinfect the bite area and wash your hands.
- Save the tick for testing (alive if possible) in a small bottle or plastic bag with a green leaf or damp piece of tissue.
- Label it with your name, date, site of bite and how long tick was attached.
To learn more about Lyme disease, check out these resources:
- American Lyme Disease Foundation, Inc. (www.aldf.com)
- Centers for Disease Control and Prevention (www.cdc.gov/lyme)
- LymeDisease.org (www.lymedisease.org)
- Mayo Clinic (www.mayoclinic.org/diseases-conditions/lyme-disease)