By: Michelle Place, CRNP-P
Give Me the Backstory
Back in 1975 an unusual cluster of arthritis cases in children occurred in a small coastal town called Lyme, Connecticut. In 1977, Yale researchers identified and named the clusters “Lyme arthritis.” In 1979, the name was changed to “Lyme disease,” when additional symptoms such as neurological problems and severe fatigue were linked to the disease. The cause of the disease was discovered by Dr. Willy Burgdorfer in 1982. He published a paper on the infectious agent of Lyme disease and earned the right to have his name placed on the Lyme disease bacterium now known as Borrelia burgdorferi.
How do you get it?
The Lyme disease bacterium, Borrelia burgdorferi, is spread through the bite of infected ticks. The blacklegged tick (or deer tick) is the only type of tick that spreads the disease in this area.
The good news is ticks cannot fly or jump. Instead, they lie in wait, holding on to the tips of grasses and shrubs with their lower legs while their upper pair of legs are outstretched. When a person or an animal brushes the spot where a tick is waiting, it quickly climbs aboard.
Ticks can attach to any part of the human body but are often found in hard-to-see areas such as the groin, armpits, and scalp.
Where do you get it?
Lyme disease is the most commonly reported illness that is spread from insects to humans in the United States, however it does not occur nationwide. Deer ticks that are infected with Lyme disease live in areas that have very low and very high seasonal temperatures as well as high humidity so it is concentrated heavily in the northeast and upper Midwest.
In 2015, 95% of confirmed Lyme disease cases were reported from only 14 states:
- New Hampshire
- New Jersey
- New York
- Rhode Island
If I find a tick on my child how worried should I be?
The chances that you might get Lyme disease from a single tick bite depend on the type of tick, where you acquired it, and how long it was attached to you.
Many types of ticks bite people in the U.S., but only blacklegged ticks, also known as deer ticks, transmit the bacteria that cause Lyme disease.
Furthermore, only blacklegged ticks found in the northeastern and north central U.S. are commonly infected.
Finally, blacklegged ticks need to be attached for at least 48 hours before they can transmit Lyme disease. As feeding ticks become engorged with blood, they release their saliva into the bite wound, however, studies suggest that the bacteria that cause Lyme disease are not found in the tick’s saliva until approximately 48 hours after it starts to feed. In most cases, if the tick is attached for 72 hours there is a much higher incidence of Lyme disease bacterium transmission. This is why it is so important to check your child’s body daily for ticks and to remove them promptly. (See previous blog What do I do if…? Summer Edition for instructions about the best way to remove a tick).
What should I look for after a tick bite? When should I worry?
A small bump or redness at the site of a tick bite that occurs immediately and looks like a mosquito bite, is common. This irritation generally goes away in 1-2 days and is not a sign of Lyme disease.
Early Signs and Symptoms (3 to 30 days after tick bite)
- Fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes
- Erythema migrans (EM) rash:
- Occurs in approximately 70 to 80 percent of infected persons
- Begins at the site of a tick bite after a delay of 3 to 30 days (average is about 7 days)
- Expands gradually over a period of days reaching up to 12 inches (30 cm) or more across (if the rash does not keep expanding or goes away after a few days it is not a Lyme rash)
- May feel warm to the touch but is rarely itchy or painful
- Sometimes clears as it enlarges, resulting in a target or “bull’s-eye” appearance
- May appear on any area of the body
** Fever and other general symptoms may occur in the absence of rash.
Later Signs and Symptoms (days to months after tick bite)
- Severe headaches and neck stiffness
- Additional EM rashes on other areas of the body
- Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
- Facial palsy (loss of muscle tone or droop on one or both sides of the face)
- Intermittent pain in tendons, muscles, joints, and bones
- Heart palpitations or an irregular heartbeat
- Episodes of dizziness or shortness of breath
- Inflammation of the brain and spinal cord
- Nerve pain
- Shooting pains, numbness, or tingling in the hands or feet
- Problems with short-term memory
Should I save the tick and bring it in for testing?
In general, testing of individual ticks is not useful because the results do not affect how the disease will be managed.
- Just because a tick tests positive for Lyme disease does not necessarily mean that you have been infected
- If you have been infected, you will probably develop symptoms before results of the tick test are available. You should not wait for tick testing results before beginning appropriate treatment.
After we find a tick should we immediately come in for a blood test for Lyme disease?
If a blood test is done right after a tick is found the results may be negative even if you are infected with Lyme disease.
It is possible for someone who is infected to test negative because:
- Antibodies against Lyme disease bacteria usually take a few weeks to develop, so tests performed too early may be negative even if you are infected. In this case, if you are retested a few weeks later, you should have a positive test if you have Lyme disease. It is not until 4 to 6 weeks have passed that the test is likely to be positive.
- Some people who receive antibiotics (e.g., doxycycline) early in the disease (within the first few weeks after tick bite) may not develop antibodies or may only develop them at levels too low to be detected by the test.
How effective are antibiotics in treating Lyme disease?
Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may suffer long-term damage to the nervous system or joints.
It is not uncommon, however, for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months. These symptoms cannot be cured by longer courses of antibiotics, but they generally improve on their own, over time.
After treatment should we repeat blood tests to make sure the Lyme disease was cured?
The tests for Lyme disease detect antibodies made by the immune system to fight off the bacteria, Borrelia burgdorferi. Once your immune system springs into action, it takes a while for it to calm back down. As a result, your immune system continues to make the antibodies against Lyme disease for months or even years after the infection is gone. This means that once your blood tests positive, it will continue to test positive for months to years even though the bacteria are no longer present. It is like a crime scene, if someone robs your house and leaves behind some DNA, it does not mean the robber is still in your house.
In short,no “test of cure” exists for Lyme disease.
What is the deal with “chronic Lyme disease”?
Although there has been a great deal of publicity about “chronic Lyme disease” in both children and adults, there is no evidence that such a thing exists. It is confusing for parents because of the enormous amount of misinformation you can find about Lyme disease on the internet. The fact is no medical definition even exists for “chronic Lyme disease.” Numerous studies from different academic medical centers have found that the great majority of patients labeled as having “chronic Lyme disease” have no evidence of Lyme disease based on either their history or the results of blood tests.
The problem with labeling non-specific symptoms as Lyme disease is that these patients often end up taking long-term antibiotics in the hope that this will alleviate their symptoms.There is substantial evidence that long-term treatment with antibiotics for “chronic Lyme disease” not only has no benefit, but is actually associated with potential negative effects including death, substantial financial expense, and an increase in antibacterial-resistant bacteria. In addition, patients labeled as “chronic Lyme disease” often fail to receive treatment for their true underlying illness or receive relief from their symptoms.