What Is Lyme Disease? Why It's So Much More Than Chronic Fatigue

Yolanda Hadid's story of discovering she had Lyme disease is heartbreaking. For years, doctors told her she "looked" healthy, and was even diagnosed with chronic fatigue before finally landing on her Lyme disease diagnosis in 2012. Though the diagnoses provided some relief, it also left her with a whole new set of questions. For starters, what is Lyme disease, and what could be done to get relief from her symptoms? 

It's helpful to know the signs of Lyme disease, and when to bring them up to your doctor if your concerns over fatigue seem to be taking over your life. Although the disease is curable with antibiotics, the challenge revolves around the diagnosis itself. The first case of Lyme disease was only diagnosed in the mid-1970s. Today, it is estimated that approximately 30,000 people in the United States get Lyme disease every year, according to the Center of Disease Control and Prevention (CDC), but that number may actually be closer to 300,000 when it includes cases that were not directly reported to the CDC. Learn more about the signs and what should be done immediately, if you or someone in your family believes you may have the disease.

Causes & Discovery

Lyme disease is a tickborne illness, meaning it is spread when bit by an infected tick. Specifically, Lyme disease is spread by the blacklegged tick, also called the deer tick. It is one of several different kinds of tickborne illnesses, including babesiosis, ehrlichiosis, Rocky Mountain Spotted Fever, anaplasmosis, and more. While the initial rash associated with Lyme disease is often characteristic, its later symptoms can be nonspecific, sometimes making it difficult to diagnose. Lyme disease is caused by the bacterium Borrelia burgdorferi. It is not caused by a virus.

What are the symptoms?

Early symptoms of Lyme disease include fevers, chills, fatigue, body aches, headache, and swollen lymph nodes. These are often, but not always, associated with the characteristic Lyme disease rash. Similar to being bitten by a mosquito, when you are bitten by a tick you may develop a small red bump. This is normal and does not mean you have Lyme disease.

However, over the next three to 30 days, this red spot may grow and spread — getting up to 12 inches wide. The expanding redness may start to clear in the center, giving the appearance of a bullseye. This rash is called “erythema migrans” and is generally not itchy or painful. The appearance of this rash after being bitten by a tick is one of the hallmarks of Lyme disease.

If untreated, additional Lyme disease symptoms may develop over days to months. These symptoms include severe headaches, arthritis, drooping of the face, muscle pain, dizziness, inflammation of the nervous system, weakness, and impaired movement. Rarely, you can also develop heart problems, eye inflammation, and liver inflammation.

How does Lyme disease affect the nervous system?

Lyme disease can cause inflammation in the nervous system, leading to many different symptoms. These include meningitis (inflammation of the membranes surrounding the brain), temporary paralysis on one side of the face (a condition called Bell’s palsy), numbness/weakness in the extremities, and impaired muscle movement.

Who is at risk?

You are at risk of getting Lyme disease if you have been bitten by an infected tick. In most cases, the tick needs to be attached to you for at least 36-48 hours for Lyme disease to be transmitted: So if you notice the tick and remove it sooner, you are less likely to become sick.

You are at higher risk of catching Lyme disease if you live in an area where Lyme disease is endemic and you engage in activities where it is likely you will be exposed to ticks, such as hiking and camping. The best way to prevent yourself from getting Lyme disease is to wear long socks, use insect repellant, wear light-colored clothing (so it is easier to see if there is a tick on you), and check yourself for ticks regularly.

What areas should you avoid?

In the United States, the vast majority of Lyme disease cases occur in the Northeast and in Minnesota and Wisconsin. Although more unlikely, it is possible to get Lyme disease in other areas of the country as well.

Is it disease contagious?

Lyme disease is not contagious and cannot be transmitted from person-to-person.

How is Lyme disease diagnosed?

Lyme disease can be diagnosed based on your symptoms, your history of exposure to infected blacklegged ticks, and a blood test. The Lyme disease blood test is not recommended if you do not also have symptoms of the disease and is not right for everybody.

Is the disease treatable?

Although there used to be a vaccine for Lyme disease, it is no longer available because there wasn’t enough demand. Its efficacy also wears off over time, so even if you were previously vaccinated, you may no longer be immune.

Lyme disease is curable with antibiotics. It can be treated with 10-21 days of oral antibiotics taken two to three times daily, and people typically recover quickly and completely. In people who have neurological involvement, Lyme disease treatment may involve IV antibiotics for 14-28 days.

What is chronic Lyme disease?

Although it has many proponents, chronic Lyme disease is not a medically recognized condition or phenomenon. There is currently no evidence that the bacteria causing Lyme disease live on in the body after treatment and there is no medical consensus about the definition of chronic Lyme disease.

Some patients may experience what is called “post-treatment Lyme disease syndrome” or “post-Lyme disease syndrome.” For this small percentage of people, fatigue, joint pain, and muscle pain may persist after treatment but typically improves over the course of a few months. The cause of this is not well understood. The evidence, however, shows that there is no benefit to treating these people with long-term antibiotics. In fact, long-term antibiotic treatment may actually cause harm.

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