What Is Lyme Disease? Symptoms, Causes, Diagnosis, Treatment, and Prevention

Early signs and symptoms of Lyme disease can be very mild and potentially missed. The disease may resemble the flu at its onset. Its most distinctive symptom is a bull’s-eye-shaped rash. But in at least one-quarter of Lyme disease patients, the telltale rash does not develop. (1)

Signs and Symptoms of Lyme Disease

The progression of Lyme disease is typically divided into three stages: (2)

• Stage 1 Localized Lyme disease, in which the infection is focused in one area of the body
• Stage 2 Early disseminated Lyme disease, in which the bacteria has begun to spread
• Stage 3 Late disseminated Lyme disease, in which the bacteria has spread throughout the body

Early Symptoms of Lyme Disease

The most common feature of localized Lyme disease is a slowly expanding skin lesion or rash known as erythema migrans (EM). This rash usually develops 3 to 30 days (7 to 14 days on average) after the disease-transmitting tick bite.

Erythema migrans is the earliest sign of the disease in about 70 percent of Lyme disease cases reported to the Centers for Disease Control and Prevention (CDC). (3)

There are certain characteristics that can help identify erythema migrans:

• It begins as a flat or slightly raised red spot at the site of the tick bite and can expand to become a round rash up to 73 centimeters (28.7 inches) across.
• It can appear on any area of the body (at the bite site) but most frequently shows up on the lower limbs, buttocks, and groin in adults, and on the head and neck in children.
• A clear ring may appear around the center of the rash, giving it a bull’s-eye-like appearance (a central circle with a clear ring around it, surrounded by a larger rash).
• It may be warm to the touch, though rarely painful or itchy.

While the classic Lyme disease rash has a bull’s-eye shape, not all cases of erythema migrans look the same. The patient may develop a red, expanding lesion with a crusting of the skin at the center; multiple red lesions; red, oval-shaped plaques; or a bluish rash. (4)

In addition to erythema migrans, people with localized Lyme disease may experience flu-like symptoms, including fever and chills, headache, fatigue, muscle and joint pains, a general ill feeling (malaise), and swollen lymph glands.

“Lyme disease can cause a sharp increase in pain and a lot of swelling in the joints,” says Joseph Ciotola, MD, an orthopedic surgeon at Mercy Medical Center in Baltimore. “It can also make you feel extra tired.”

About 20 percent of people with Lyme disease don’t experience any symptoms other than erythema migrans.

Later Symptoms of Lyme Disease

In early disseminated (stage 2) Lyme disease, which occurs weeks to months after the tick bite, other symptoms may develop, including:

• Additional erythema migrans lesions
• Nerve pain
• Facial or Bell’s palsy, a paralysis or weakness in the muscles on one side of the face
• Lyme carditis, in which Lyme disease bacteria enter the tissues of the heart and interfere with the normal process that coordinates the beating of the heart; symptoms include palpitations, chest pain, or shortness of breath

Late disseminated (stage 3) Lyme disease, which develops months to years after the infection begins, may cause:

• Arthritis with severe joint pain and swelling, especially in large joints such as the knees
• Pain in the tendons, muscles, joints, and bones
• Abnormal muscle movement
• Numbness and tingling in the hands or feet
• Cognitive problems, including issues with speech and short-term memory
• Severe headaches and neck stiffness from meningitis (inflammation of the membranes covering the spinal cord and brain)

Learn More About Signs and Symptoms of Lyme Disease

Causes and Risk Factors of Lyme Disease

Lyme disease is caused by the bacterium Borrelia burgdorferi and, rarely, Borrelia mayonii. Humans can get Lyme disease if they are bitten by an infected blacklegged tick. (5)

Usually, the deer tick must be attached for 36 to 48 hours to transmit Lyme disease. (6)

Not all ticks carry Lyme disease, and some ticks carry other diseases.

A person’s chances of getting bitten by a tick and getting Lyme disease can depend on where they live or travel or what they do for a living. Common risk factors for contracting Lyme disease include the following: (6)

• Spending a lot of time in wooded or grassy areas, especially in the Northeast and Midwest United States
• Exposed skin, which can make it easier for ticks to attach or bite you
• Removing ticks incorrectly or removing them 36 hours or more after they’ve attached to your skin, which allows the bacteria from the bite to enter your skin

How Is Lyme Disease Diagnosed?

Your doctor can make a preliminary diagnosis of Lyme disease based on your symptoms and history of exposure to blacklegged ticks.

It’s likely that you have Lyme disease if you:

• Live in an area where blacklegged ticks are common
• Have a bull’s-eye-shaped erythema migrans rash
• Have other common Lyme disease symptoms, in addition to a rash

Your doctor may confirm your diagnosis with laboratory blood tests or may conduct these tests if you don’t meet all the above criteria. If a patient’s symptoms and history suggest that Lyme disease is likely, the doctor will probably begin treatment without waiting for a blood test.

The CDC recommends a two-step process for testing blood for the antibodies against Lyme disease: the enzyme immunoassay (EIA) or indirect immunofluorescence assay (IFA), followed by an immunoblot test (Western blot) if the first test is positive.

A diagnosis of Lyme disease is made if both the EIA or IFA and the Western blot test are positive. (7) These tests measure antibodies made by the immune system in response to the Lyme infection. However, laboratory testing for Lyme disease can be inaccurate because it can take weeks for an infected patient’s body to create a detectable immune response. If the test is administered before the body develops these antibodies, the results will be negative even if the person has Lyme disease. (8) Plus, lab tests for Lyme disease can be falsely positive when you have other infectious diseases and autoimmune diseases. In general, Lyme tests can be difficult to interpret because of their limitations.

Prognosis of Lyme Disease

People treated with antibiotics in the early stages of Lyme disease usually make a full recovery. Without treatment there can be complications that involve the joints, heart, and nervous system, but these symptoms can still go away with treatment.

Although it is rare, some people develop what’s called post-Lyme disease syndrome. Those individuals still have symptoms of Lyme Disease that interfere with their life even after they’ve been treated. (2)

Duration of Lyme Disease

Lyme disease can last a month or two or as long as months or years, depending on whether it is promptly or effectively treated.

When treated with antibiotics, most people recover from Lyme disease within a few weeks. If it isn’t treated right away because symptoms weren’t present or it was misdiagnosed, the infection can affect different parts of the body and last several months.

Late persistent Lyme disease may develop without proper treatment. This phase can cause arthritis, fatigue, and numbness. Although it is rare, heart problems such as inflammation around the heart can occur months or years after the tick bite. (9)

Treatment and Medication Options for Lyme Disease

Lyme disease is treated with antibiotics. Typically, the sooner the treatment is started (and completed), the faster the recovery will be.

Medication Options

The standard treatment for adults and children for early-stage Lyme disease is oral antibiotics. (6)

• Doxycycline can be used for adults and children older than 8.
• Amoxicillin or cefuroxime is recommended for adults, younger children, and pregnant or breastfeeding women.

If Lyme disease progresses to a more advanced stage and involves the nervous system, intravenous antibiotics may be needed. These are usually prescribed for 14 to 28 days and will eliminate the infection. (6)

Alternative and Complementary Therapies

There are no proven treatments for Lyme disease other than antibiotics. There are alternative or complementary treatments that are marketed to people with Lyme disease, but there isn’t scientific evidence to prove they work or are even safe to use. (6)

Bismacine, also known as chromacine, is an alternative medicine that some people try for Lyme disease. The U.S. Food and Drug Administration (FDA) has cautioned against using this injectable product, which has reportedly caused hospitalization and at least one death. (10)

If you’re considering an alternative or complementary treatment for Lyme disease, it’s important to talk with your doctor first.

Learn More About Treatment for Lyme Disease: Medication, Alternative and Complementary Therapies, Surgery Options and More

Prevention of Lyme Disease

There isn’t a vaccine to protect against Lyme disease. The following precautions can help reduce your chances of getting a tick bite: (11)

• Avoid woody, brushy, and grassy areas, especially in May, June, and July.
• Wear light-colored clothes so that you can spot a tick if it gets on you.
• Wear long pants and long-sleeved shirts and shoes that cover your whole foot (no sandals).
• Tuck your pant legs into socks or shoes, and tuck your shirts into your pants.
• Wear a hat to protect your head.
• Spray insect repellent containing DEET on clothes and areas of uncovered skin.
• If you’re on a trail, walk in the center to avoid brush and grass.
• Take off your clothes right away when you come in from the outdoors, and wash and dry them at high temperatures.
• Carefully check your body and head for ticks after outdoor activities.

Complications of Lyme Disease

Neurological complications can begin to develop in early disseminated (stage 2) Lyme disease. These complications may include:

• Vision disturbances
• Reduced ability to concentrate
• Irritability
• Sleep and memory disorders
• Nerve damage in the legs and arms (neuropathy)

Other non-neurological complications can also develop, such as severe arthritis, persistent fatigue, mood disturbances, and life-threatening disorders of the heart, lungs, and nervous system.

Research and Statistics: Who Can Get Lyme Disease?

Anyone can get a tick bite. People who spend time outdoors such as campers, hikers, and people who work in gardens and other leafy outdoor venues are at the highest risk. (11)

Between 2004 and 2016, the number of disease cases from ticks doubled. (12) In 2018, there were 33,666 reported cases of Lyme disease, down from 42,743 cases in 2017. (13)

The states with the highest reported number of tick related diseases were Pennsylvania, New York, New Jersey, Massachusetts, Connecticut, Wisconsin, Minnesota, Maryland, Virginia, and New Hampshire. (12)

Black and Hispanic Communities and Lyme Disease

The reported number of Lyme disease cases are much higher in white Americans than in other races or ethnicities. However, there are disparities in diagnosis and treatment of the condition.

Black Americans and Lyme Disease

The hallmark EM “bull’s eye” or target shaped lesion or rash may be less visible on people of color, or it may be missed because doctors have less experience or education diagnosing EM on patients of color, which could delay diagnosis of Lyme disease. (14)

Further indication of late or missed diagnosis is the greater incidence of late-Lyme arthritis among Black Americans when compared with white Americans, which is associated with ongoing infection. (15)

Hispanic Americans and Lyme Disease

Outdoor workers in areas that have a greater incidence of tick-related diseases are at increased risk for getting Lyme disease. (11) In the United States, Hispanics comprise an estimated 44 percent of grounds maintenance workers and 48 percent of workers in the farming, fishing, and forest industries, potentially placing them at higher risk of Lyme disease. (16)

Research published in 2016 found that the overall incidence of Lyme disease in Hispanic Americans was lower than that found in white Americans, although the authors speculated that lower number may be related to inadequate healthcare access, language barriers, and lack of health insurance, rather than fewer cases of the disease. (17)

Investigators found that Hispanic Americans with Lyme disease were significantly more likely than white Americans with Lyme disease to have signs of disseminated infection and symptom onset during the fall months. (17)

Related Conditions and Causes of Lyme Disease

Although Lyme disease is by far the most common tick-borne disease in the United States, there are others.

Anaplasmosis and ehrlichiosis are caused by tick bites and can affect people of any age. Symptoms can include fever, muscle aches, weakness, and headache. Tetracycline (Sumycin) antibiotics usually cure the diseases quickly. (18)

Spotted fever rickettsioses are a group of diseases spread by infected ticks and mites. The illnesses these infections can cause can range from mild to life-threatening, and symptoms include fever, headache, and rash. The antibiotic doxycycline (Vibramycin) is usually used to treat spotted fever infections. (19)

Babesiosis is a rare disease caused by the bite of a tick infected with Babesia microti, a tiny parasite that infects red blood cells. Many people who get this infection don’t have any symptoms, while others have flu-like symptoms such as fever, chills, and body aches. A blood test can be done to confirm the infection. If babesiosis requires treatment (it doesn’t always), antibiotics are used. It’s possible to be infected with Lyme disease and babesiosis at the same time. (20)

Resources We Love

To find out more information about how Lyme disease is diagnosed and treated, as well as tips on prevention, check out the following resources:

American Lyme Disease Foundation (ALDF)

This organization is dedicated to preventing, diagnosing, and treating Lyme disease.

LymeDisease.org

The mission of this group is to empower people with Lyme disease by providing education and research tools and to advocate for legislative change.

MedlinePlus

The MedlinePlus encyclopedia offers medically reviewed information on the causes and treatment of Lyme disease.

Lyme Disease Support Network

This online community helps connect people with Lyme disease, as well as their caregivers. Message boards allow people to share information and experiences about living with the disease.

Additional reporting by Becky Upham.