Lyme disease is an underreported, under-researched, and often debilitating disease transmitted by spirochete bacteria. The spiral-shaped bacteria, Borrelia burgdorferi, are transmitted by blacklegged deer ticks. Lyme’s wide range of symptoms mimic those of many other ailments, making it difficult to diagnose (1, 2).
The blacklegged ticks can also transmit other disease-causing bacteria, viruses, and parasites. These are known as coinfections (1). These ticks that transmit Lyme are increasing their geographical spread. As of 2016, they were found in about half the counties in 43 of 50 states in the United States (3).
Lyme is the fifth most reported of notifiable diseases in the United States, with an estimated 329,000 new cases found annually (4). But in some states, estimates suggest that Lyme disease is profoundly underreported (4). Some studies estimate that there are as many as 1 million cases of Lyme in the United States every year (5).
Most people with Lyme who are treated right away with three weeks of antibiotics have a good prognosis.
But if you’re not treated for weeks, months, or even years after infection, Lyme becomes more difficult to treat. Within days of the bite, the bacteria can move to your central nervous system, muscles and joints, eyes, and heart (6, 7).
Lyme is sometimes divided into three categories: acute, early disseminated, and late disseminated. But the progression of the disease can vary by individual, and not all people go through each stage (8).
Every individual reacts to the Lyme bacteria differently. You may have some or all of these symptoms. Your symptoms may also vary in severity. Lyme is a multi-system disease.
Here is a list of 13 common signs and symptoms of Lyme disease.
The signature rash of a Lyme tick bite looks like a solid red oval or a bull’s-eye. It can appear anywhere on your body. The bull’s-eye has a central red spot, surrounded by a clear circle with a wide red circle on the outside.
The rash is flat and usually doesn’t itch. The rash is a sign that the infection is spreading within your skin tissues. The rash expands and then resolves over time, even if you’re not treated.
Thirty percent or more of people with Lyme disease don’t remember having the rash (9).
Even fewer people remember a tick attachment. Estimates range from 20 to 50 percent (10). The ticks in the nymph stage are the size of poppy seeds, and their bites are easy to miss.
The initial red rash usually appears at the site of the bite within 3 to 30 days (11). Similar but smaller rashes can appear three to five weeks later, as the bacteria spread through tissues (12). Sometimes the rash is just a red blotch (1, 13). The rash can also take other forms, including a raised rash or blisters (14).
If you do have a rash, it’s important to photograph it and see your doctor to get treated promptly.
Whether or not you see the tick bite or the classic Lyme rash, your early symptoms are likely to be flu-like. Symptoms are often cyclical, waxing and waning every few weeks (12).
Tiredness, exhaustion, and lack of energy are the most frequent symptoms. The Lyme fatigue can seem different from regular tiredness, where you can point to activity as a cause. This fatigue seems to take over your body and can be severe.
You may find yourself needing a nap during the day, or needing to sleep one or more hours longer than usual.
Sometimes Lyme-related fatigue is misdiagnosed as chronic fatigue syndrome, fibromyalgia, or depression (8).
In some Lyme cases, fatigue can be disabling (16).
Joint pain and stiffness, often intermittent, are early Lyme symptoms. Your joints may be inflamed, warm to the touch, painful, and swollen. You may have stiffness and limited range of motion in some joints (1).
Pain may move around. Sometimes your knees may hurt, whereas other times it’s your neck or your heels. You may also have bursitis (16). Bursae are the thin cushions between bone and surrounding tissue.
The pain may be severe, and it may be transitory. More than one joint may be affected. Most often the large joints are involved (12).
People often attribute joint problems to age, genetics, or sports. Lyme should be added to that list, as these statistics indicate:
- One study estimates that 80 percent of people with untreated Lyme have muscle and joint symptoms (17).
- Fifty percent of people with untreated Lyme have intermittent episodes of arthritis (17).
- Two-thirds of people have their first episode of joint pain within six months of the infection (18).
- Use of anti-inflammatory drugs may mask the actual number of people with joint swelling (19).
Other common flu-like symptoms are headaches, dizziness, fever, muscle pain, and malaise.
About 50 percent of people with Lyme disease have flu-like symptoms within a week of their infection (18).
Your symptoms may be low-level, and you may not think of Lyme as a cause. For example, when fever occurs, it’s usually low-grade (18).
In fact, it can be difficult to distinguish Lyme flu symptoms from a common flu or viral infection. But, unlike a viral flu, for some people the Lyme flu-like symptoms come and go.
Here are a few statistics from different studies of Lyme patients:
- Seventy-eight percent of children in one study reported headaches (8).
- Forty-eight percent of adults with Lyme in one study reported headaches (20).
- Fifty-one percent of children with Lyme reported dizziness (8).
- In a 2013 study of adults with Lyme, 30 percent experienced dizziness (15).
- Thirty-nine percent of children with Lyme reported fevers or sweats (8).
- Among adults with Lyme, 60 percent reported fever in a 2013 study (15).
- Forty-three percent of children with Lyme reported neck pain (8).
- A smaller number of children with Lyme reported sore throats (8).
Sleep disturbances in Lyme are common.
Joint pain may wake you up at night. Your body temperature may fluctuate, and night sweats or chills can wake you.
Your face and head may feel flushed.
Here are some of the statistics from studies:
- In a 2013 study, 60 percent of adults with early Lyme reported sweats and chills (15).
- The same study reported that 41 percent experienced sleep disturbances (15).
- Twenty-five percent of children with Lyme reported disturbed sleep (8).
There are many kinds and degrees of cognitive disturbances, and they can be scary.
You may notice that you have difficulty concentrating in school or at work.
Your memory may have lapses that weren’t there before. You may have to reach to remember a familiar name.
You may feel as though you’re processing information more slowly.
Sometimes when driving or taking public transportation to a familiar place, you may forget how to get there. Or you may be confused about where you are or why you’re there.
You might get to a store to shop, but entirely forget what it was that you were supposed to look for.
You might at first attribute this to stress or age, but the decline in capabilities may worry you.
Here are some statistics:
- Seventy-four percent of children with untreated Lyme reported cognitive problems (8).
- Twenty-four percent of adults with early Lyme reported difficulty concentrating (15).
- In later Lyme, 81 percent of adults reported memory loss (21).
Bright indoor light may feel uncomfortable or even blinding.
Light sensitivity is bad enough for some people to need sunglasses indoors, in addition to wearing sunglasses outdoors in normal light.
Light sensitivity was found in 16 percent of adults with early Lyme (15).
In the same study, 13 percent reported blurry vision.
Neurological symptoms can be subtle and sometimes specific.
In general, you may feel unsure of your balance or less coordinated in your movements.
Walking down a slight incline on your driveway might take an effort that it never did before.
You might trip and fall more than once, although this never happened to you before.
Some Lyme effects are very specific.
For example, the Lyme bacteria may affect one or more of your cranial nerves. These are the 12 pairs of nerves that come from your brain to your head and neck area.
If the bacteria invade the facial nerve (the seventh cranial nerve), you can develop muscle weakness or paralysis on one or both sides of your face. This palsy is sometimes mistakenly called Bell’s palsy. Lyme disease is one of the few illnesses that cause palsies on both sides of the face. Or you may have numbness and tingling on your face.
Other affected cranial nerves can cause loss of taste and smell.
A Centers for Disease Control and Prevention (CDC) study of 248,074 reported Lyme disease cases nationwide from 1992 to 2006 found that 12 percent of Lyme patients had cranial nerve symptoms (9).
As the Lyme bacteria spread through the nervous system, they can inflame the tissues where the brain and spinal cord meet (the meninges).
These neurological symptoms occur in about 10 percent of adult individuals with untreated Lyme disease (18).
Skin symptoms appear early in Lyme (21).
You may have unexplained skin rashes or large bruises without usual cause.
Other skin ailments associated with Lyme are:
- morphea, or discolored patches of skin (21)
- lichen sclerosus, or white patches of thin skin (21)
- parapsoriasis, a precursor to skin lymphoma
In Europe, some of the skin diseases that result from Lyme transmitted by a different Borrelia species are:
- borrelial lymphocytoma, which is common in Europe as an early Lyme marker (22)
- acrodermatitis chronica atrophicans (21)
Lyme bacteria can invade your heart tissue, a condition called Lyme carditis.
Carditis can range from mild to severe.
The bacterial interference in your heart can cause chest pains, light-headedness, shortness of breath, or heart palpitations (23).
The inflammation caused by the infection blocks the transmission of electrical signals from one chamber of the heart to the other, so the heart beats irregularly. This is known as heart block.
Lyme can also affect the heart muscle itself.
How common is Lyme carditis? Here are some statistics:
- The CDC reports that only 1 percent of reported Lyme cases involve carditis (23).
- Other studies report that 4 to 10 percent of Lyme patients (or more) have carditis (24, 25). However, these figures may include a broader definition of carditis.
- Children can also have Lyme carditis (24).
With treatment, most people will recover from an episode of Lyme carditis. However, it has caused occasional deaths. The CDC reported three sudden Lyme carditis deaths from 2012–2013 (26).
Lyme can affect your moods.
You may be more irritable, anxious, or depressed.
When no problem is found, after the usual testing, the ER diagnosis is noted as an unidentified “musculoskeletal” cause.
Other symptoms have to do with cranial nerves.
- Ear-ringing (tinnitus). Tinnitus can be a nuisance, especially at bedtime when it seems to get louder as you’re trying to fall asleep. About 10 percent of people with Lyme experience this (15).
- Hearing loss. One study reported that 15 percent of Lyme patients experienced loss of hearing (28).
- Jaw pain or toothaches that are not related to actual tooth decay or infection.
Children are the largest population of Lyme patients.
The CDC study of reported Lyme cases from 1992–2006 found that the incidence of new cases was highest among 5- to 14-year-olds (9). About one quarter of reported Lyme cases in the United States involve children under 14 years old (29).
Children can have all the signs and symptoms of Lyme that adults have, but they may have trouble telling you exactly what they feel or where it hurts.
You may notice a decline in school performance, or your child’s mood swings may become problematic.
Your child’s social and speech skills or motor coordination may regress. Or your child may lose their appetite.
Children are more likely than adults to have arthritis as an initial symptom (25).
In a 2012 Nova Scotian study of children with Lyme, 65 percent developed Lyme arthritis (30). The knee was the most commonly affected joint.
If you have some of the signs and symptoms of Lyme, see a doctor — preferably one familiar with treating Lyme disease!
The International Lyme and Associated Diseases Society (ILADS) can provide a list of Lyme-aware doctors in your area (31).
What to do if you have a blacklegged tick bite
Remove the tick by pulling it directly out with fine-tipped tweezers. Lift upward with slow and even pressure. Don’t twist when removing it. Don’t crush it or put soap or other substances on it. Don’t apply heat to it.
Place the tick in a resealable container. See if you can identify what kind of a tick it is.
Immediately after removing the tick, wash your skin well with soap and water or with rubbing alcohol.
Not all ticks carry Lyme. The Lyme bacteria is transmitted only by blacklegged ticks in their nymph or adult stage.
Save the tick to show your doctor. The doctor will want to determine if it’s a blacklegged tick and if there’s evidence of feeding. Ticks enlarge as they feed. Your risk of getting Lyme from an infected tick increases with the length of time that the tick fed on your blood.
Even with three weeks of antibiotics, you may need one or more courses of antibiotics if your symptoms return.
Lyme is tricky and affects different people in different ways. The longer you’ve had symptoms, the more difficult it is to treat.
Lyme is a serious tick-borne disease with a wide range of symptoms.
If you get treated as soon as possible with an adequate course of antibiotics, you’ll have a better outcome.
Finding a Lyme-aware doctor is important.