Lyme disease is a bacterial infection caused by Borrelia burgdorferi. It is spread by certain species of ticks. Not all ticks are carriers, and not all areas have ticks carrying the bacteria.

If you are a parent or caregiver, your child’s risk is greater than yours. That’s because children are closer to the ground, more likely to spend time outdoors, more likely to play in leaves and roll in grass, and often closer to pets that carry ticks.

How Common Is Lyme Disease?

It’s estimated that 476,000 people contract Lyme disease in the United States every year, but only a fraction are reported to the Centers for Disease Control and Prevention.

Symptoms

There are said to be three phases of Lyme disease. Most people with Lyme disease do not remember being bitten by a tick, so it’s hard to tell when the first phase begins. Regardless, symptoms can appear a few days to many months after the bite.

First signs of Lyme disease can include:

  • A rash that looks like a bullseye (red circle with a clear center) near the tick bite
  • Fever
  • Tiredness
  • Headache
  • Neck pain
  • Muscle aches
  • Joint pain

A few days to a few weeks later, untreated Lyme can progress with symptoms like:

  • Neck stiffness and severe headaches
  • Slow or irregular heartbeat or heart palpitations
  • Dizziness and shortness of breath
  • Shooting pain, numbness, or tingling in the hands and feet
  • Mood changes and memory problems
  • Facial palsy (drooping nerve on one or both sides of the face)
  • Nerve pain
  • Intermittent pain in joints, muscles, bones, tendons

Children with untreated Lyme disease do not feel well, and their illness interferes with their ability to perform daily activities. Some cases of Lyme disease may even contribute to learning disabilities and behavioral problems.

Diagnosis

Contact your pediatrician to discuss your child’s symptoms. They will perform the following to confirm or rule out Lyme disease in your child:

  • Physical exam to check for rashes
  • Neurological exam
  • Blood test or lumbar puncture, also called a spinal tap, to detect antibodies, which are immune cells produced by the body to fight an infection

Antibodies can take several weeks to develop, so patients may test negative if they have been infected only recently. Also, infection with other diseases can sometimes result in false-positive test results.

Exposure

There are two species of ticks that transmit the Lyme disease bacteria in North America:

Positive results don’t always mean a Lyme disease diagnosis. In some cases, you can have a positive result but not an infection. Positive results may also mean you have an autoimmune disease, such as lupus or rheumatoid arthritis.

  • Eastern blacklegged (deer) tick: Found in northeastern, mid-Atlantic, and north central statesWestern blacklegged tick: Found in Pacific Coast states

The two ticks look very similar. The Eastern tick is smaller (about the size of a sesame seed) and is red with a black mark on its upper back, while the Western tick has a more oval body.

Exposure to ticks can happen all year long, but is most likely to occur between the warmer months of June and October.

The best way to tell if your child has been exposed is to check for the distinct rash that occurs in Lyme disease. The bullseye rash occurs in 70% to 80% of cases. It is caused by the bacteria moving through your skin from the bite site three to 30 days after exposure and expanding over several days.

The rash will:

  • Feel warm to touch, but not typically itchy or painfulSometimes clear while enlargingAppear anywhere on the bodyReach up to 12 inches (30 cm) or more across

Testing

Lyme disease tests are performed using a blood or cerebrospinal fluid sample. If you have symptoms like neck stiffness and numbness in your hands or feet, your doctor will recommend testing your cerebrospinal fluid (CSF). CSF is a clear liquid found in your brain and spinal cord. 

The Centers for Disease Control and Prevention (CDC) recommends a two-test process:

Lyme Disease Doctor Discussion Guide

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  • If your first test result is negative for Lyme disease, you don’t need any more testing.If your first result is positive for Lyme disease, your blood will get a second test.If both results are positive for Lyme disease and you also have symptoms of the infection, you probably have Lyme disease.

If your lumbar puncture results are positive, it may mean you have Lyme disease, but you might need more tests to confirm a diagnosis.

Treatment

A short course of oral antibiotic treatment in the early stages of Lyme disease is highly effective. Most people recover rapidly and completely within a few weeks of completing their full course of treatment. Complicated cases of Lyme may require three to four weeks of antibiotics.

Antibiotics used are targeted at treating the rash, and the dosage will be adjusted based upon age, medical history, health status, and allergies.

Prognosis

Most people recover completely without long-term complications, but some researchers estimated that 10%–20% of patients continue to suffer from persisting symptoms after treatment.

Some will struggle with symptoms of extreme tiredness and fatigue. It’s unclear why symptoms remain in some and not others, but additional antibiotics do not help. This is called post-treatment Lyme disease syndrome.

Other possible complications include:

  • Lyme arthritis: Your child may experience swelling in their joints, particularly in large joints and especially the knee. This is much more likely to happen if Lyme disease is not treated in its earlier stages. It’s estimated by some that 60% of infected people who didn’t receive treatment ended up with Lyme arthritis.
  • Lyme carditis: Lyme can also enter the heart and cause heartbeat dysfunction (carditis). This happens in one out of every 100 cases, but patients typically recover within one to six weeks after treatment ends.
  • Neurological Lyme: Bacteria can enter the nervous system, and your child’s nerves may stop working properly. Out of every 100 cases reported to the CDC, none have facial palsy and three have meningitis, inflammation of the membrane surrounding the brain and spinal cord.

Coping

Post-treatment Lyme disease syndrome (sometimes called chronic Lyme) can be difficult to deal with. The symptoms fluctuate, and are sometimes confusing and exhausting. There is also controversy over Lyme testing and treatment.

There are ways you can cope with Lyme disease starting now:

  • Choose a doctor you can trust.
  • Talk about financial concerns you have regarding antibiotic treatments, which can be quite expensive, especially for ongoing use.
  • Do your own research on Lyme disease so you’re comfortable talking to your doctor and asking questions, especially regarding health risks of long-term antibiotic use.
  • Look for research groups or services in medical school hospitals or clinics that may have open opportunities for participation.
  • Join one of many online organizations for patients, family members, or caregivers—such as lymedisease.org—for support and more coping strategies.

Prevention

You can’t always prevent ticks from popping up, especially if you live in a high-risk area. However, it’s important teach your children outdoor safety guidelines like checking themselves for ticks and sticking on trails.

Other tips on preventing a tick bite include:

  • Choose light clothing: This way you can spot a tick on your child’s clothes much easier.Cover your child when they’re outdoors: Tucking pants into socks, wearing long-sleeved shirts tucked into pants, wearing a hat and close-toed shoes can all help protect your child from ticks.Stay on clear paths: Choose to walk clear paths when out in the woods, grasses, and yards so you can spot ticks. Check your child’s body: No matter what, do a full body check for ticks before ending the outdoor activity. You should also check any pets for ticks.Clean your child: Ticks take a few hours to attach, so giving your child a shower after outdoor play can help to remove any ticks that have not attached.

Ticks Checks

Checking for ticks can help prevent your child from getting bitten. Check the following areas, using your fingers or a fine-toothed comb to see the skin in between hairs:

DEET is not 100% effective at keeping ticks away from your children, but it does repel ticks:

  • Behind the knees, between the fingers and toes, in the underarms, and in the groinIn the belly buttonIn and behind the ears, on the neck, in the hairline, and on top of the headWhere underwear elastic touches the skinWhere bands from pants or skirts touch the skinAnywhere else clothing presses on the skinAll other areas of the body

If you find a tick, don’t panic. Follow the protocol below:

  • Locate your nearest tweezers (make sure they’re clean).Use them to grasp right close to the skin’s surface around the tick.Steady your hand and apply even pressure as you pull directly upward.Try not to twist or clamp down suddenly on the tick’s body because you could break off its mouth and it could get stuck in the skin. If this happens, you can still try to get the rest out, but don’t do more damage to the skin area in the process. It’s best to leave it alone and let the skin heal.Wash your hands thoroughly with soap and water, then clean the skin around the bite, and wash up again.

Summary

Tick bites and Lyme disease are similarly tricky and frustrating in children. If your child has symptoms of Lyme disease, check with their pediatrician for an accurate diagnosis. Treatment, when started early, is highly effective, and most people make a full recovery with few complications.

How to Get Rid of a Live Tick

Do not try to kill the tick with your fingers. You can:

A Word From Verywell

As a parent, you are already doing something positive for your child by looking into the symptoms, diagnosis, treatment, and ways of coping with Lyme disease. While the testing process can be frustrating, treatment with antibiotics in the early stages of the disease is highly effective for full recovery.

If you think your child has been exposed to ticks carrying the bacteria or if your child is displaying symptoms, you should contact a doctor. It’s okay if you didn’t see a tick or the distinct rash. With treatment, most people make a full recovery without any lasting symptoms. 

  • Centers for Disease Control and Prevention. Post-treatment Lyme disease syndrome.
  • Boston Children’s Hospital. Lyme disease.
  • Nemours Kids Health. Lyme disease.
  • Centers for Disease Control and Prevention. Signs and symptoms of untreated Lyme disease.
  • Lymedisease.org. Children with Lyme disease.
  • Centers for Disease Control and Prevention. Lyme disease: diagnosis and testing.
  • MedlinePlus. Lyme disease tests.
  • Centers for Disease Control and Prevention. Lyme disease: transmission.
  • Boston Children’s Hospital. Lyme disease treatment & prevention.
  • Centers for Disease Control and Prevention. Treatment for erythema migrans.
  • Feng J, Leone J, Schweig S, Zhang Y. Evaluation of natural and botanical medicines for activity against growing and non-growing forms of b. Burgdorferi. Front Med (Lausanne). 2020 Feb 21;7:6. doi:10.3389/fmed.2020.00006
  • Harvard Health Publishing. Chronic Lyme arthritis: a mystery solved?
  • Centers for Disease Control and Prevention. Lyme carditis.
  • Centers for Disease Control and Prevention. Neurological Lyme disease.
  • Harvard Health. Lyme disease: resolving the “Lyme wars.”
  • Johns Hopkins Medicine. Lyme disease in children.
  • Centers for Disease Control and Prevention. Tick removal.

By Michelle Pugle

Michelle Pugle, BA, MA, is an expert health writer with nearly a decade of contributing accurate and accessible health news and information to authority websites and print magazines. Her work focuses on lifestyle management, chronic illness, and mental health. Michelle is the author of Ana, Mia & Me: A Memoir From an Anorexic Teen Mind.