Lyme: The Imitator and Quiet Epidemic of the Northeast

Cover image of a tick reaching from a blade of grass, a big red caution icon is over the image due to warning about lyme disease

The summer months certainly increase our time in outdoor activities. However, it is important to keep in mind the risks of ticks. Lyme disease is a growing epidemic across the northeastern United States of America (U.S.).

On the rise

Lyme disease was first recognized in the U.S. in 1975, after a mysterious outbreak of arthritis near Lyme, Connecticut. It is known as an imitator of many other conditions. Many times this makes it difficult to diagnose initially.  

Over the past 40+ years Lyme disease has become very prevalent in certain areas of the country. It is one of the fastest-growing vector-borne infections in the U.S. As you can see on the map of the U.S. below, each dot represents a reported case. Pennsylvania is essentially covered in blue. So much so that you cannot tell from the key that the state has a “high incidence” label. You can also see from the map of 2018 and the latest map from 2023 how the incidences have grown.

Reported cases of Lyme disease, 2018

Reported cases of Lyme disease, 2023

The U.S. map above reflects data from 2023.

The Pennsylvania Department of Health has introduced a Tickborne Diseases Dashboard, offering detailed information on ticks, Lyme disease, and other tickborne illnesses. The dashboard includes county-level data across the commonwealth, along with an interactive map to help you explore prevalence and trends more easily. https://www.pa.gov/agencies/health/diseases-conditions/infectious-disease/vectorborne-diseases/tick-diseases.html

What causes Lyme disease?

Lyme disease is spread by the bite of a tick. Specifically, the blacklegged tick, also known as a deer tick is the culprit.  Larvae and nymphs can become infected with Lyme disease bacteria when they feed on infected small animals, particularly the white-footed mouse. The bacteria remain in the tick as it changes from larva to nymph or from nymph to adult. Once infected, Lyme disease bacteria can be transmitted to other small rodents, other animals, and humans, through a bite. Check out the life cycle of the blacklegged tick as shown in this image from the CDC website below. 

More about Ticks

The lifecycle of blacklegged ticks (lxodes scapularis and lxodes pacifus) generally lasts two years. During this time, they go through four life stages: egg, six-legged larva, eight-legged nymph, and adult. After the eggs hatch, the ticks must have a blood meal at every stage to survive. Blacklegged ticks can feed from mammals, birds, reptiles, and amphibians. The ticks need to have a new host at each stage of their life as shown below:

Transmission Lifecycle of BlackLegged Ticks
This diagram shows the lifecycle of blacklegged ticks that can transmit Lyme disease.

The majority of Lyme disease cases are spread from the bite of the nymph. These are the immature ticks. They are as small as a fleck of pepper or a poppy seed. This makes it difficult to see them. Adult ticks can also carry Lyme disease, but because of their size they are usually discovered much more quickly than the nymph. 

Ticks can remain active in temperatures as low as 39°F. While most Lyme disease cases are reported during the spring and summer, when the nymphs emerge, it’s still possible to contract the illness in the fall and winter, especially during a mild winter.

Ticks cannot fly or jump. They get around by waiting on grass to latch onto animals or humans. This is called “questing.” Holding on with their back legs they reach out and grab a passerby with their front legs, hitchhiking a ride and then they try to find a feeding site.

Image of a tick questing or reaching to latch onto a human or animal. A comic text bubble has been added with text "I'm on a quest for my next host"

They like to hide in areas such as the groin, armpits, behind the knee, and scalp.  It is important, especially after spending time outside, to do daily checks. Many times, the bite of a tick can go undetected because their saliva has numbing properties. The tick may also fall off before it is noticed. Generally, a blacklegged tick needs to be embedded for 36-48 hours to transmit the Lyme bacteria.

How do I remove a tick?!

If a tick is discovered here are some tips from the CDC on how best to remove it.

Not only is it essential to remove the tick as soon as possible but getting a quick diagnosis and swift treatment is also key if you suspect Lyme disease. It is important to be aware of the signs and symptoms that can be experienced. Left untreated, Lyme disease can affect the joints, the heart, the brain, and/or the central nervous system. It can become a severely debilitating disease.   

Below are some of the signs and symptoms that may accompany a Lyme infection. This is not a complete list and it can vary from person to person. Several of these symptoms could be misinterpreted as being many other conditions such as, meningitis, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, Parkinson’s, influenza, COVID-19 and hundreds more. Making it even more challenging to diagnose, 30% of people with Lyme will not develop the telltale bullseye rash. In some cases, the rash may present in a different pattern.  

Early Signs and Symptoms (3 to 30 Days After Tick Bite)

Fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes may occur in the absence of rash.

“Classic” Erythema Migrans Rash (EM)

  • Occurs in approximately 70% – 80% 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 several days reaching up to 12 inches or more (30 cm) across
  • 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
  • Does not always appear as a “classic” erythema migrans 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
  • Facial palsy (loss of muscle tone or droop on one or both sides of the face)
  • Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
  • Intermittent pain in tendons, muscles, joints, and bones
  • Heart palpitations or an irregular heartbeat (Lyme carditis)
  • 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

How does one get diagnosed?

Diagnosis is made by a physician or nurse upon examination and evaluating the signs and symptoms. In the early stage or acute Lyme disease, a blood test may show a negative result. Therefore, blood tests do not accurately diagnose Lyme disease in the first few weeks of infection. However, once the diagnosis of Lyme has been made, the standard for treatment is an antibiotic. The physician will determine the course, dependent on variables such as how long the tick was embedded and/or the symptoms that are reported.

How do I prevent?!

Prevention is essential. Some may think that ticks are only active in the summer. While true that they are more active, it is still possible to have a tick bite throughout the year. Here are some tips from the CDC on Prevention:

  • Use Environmental Protection Agency (EPA) registered insect repellents containing DEET, picaridin, IR3535, oil of lemon eucalyptus, para-menthane-diol, or 2-undecanone. Always follow product instructions.
  • Wear clothing treated with permethrin.
  • Shower as soon as possible after spending time outdoors.
  • Check for ticks daily. Ticks can hide under the armpits, behind the knees, in the hair, and in the groin.
  • Tumble clothes in a dryer on high heat for 10 minutes to kill ticks on dry clothing after you come indoors. If the clothes are damp, additional time may be needed.

Moving forward

Lyme disease is a complicated condition. Unfortunately there has not been a significant amount of funding made available for research. Hopefully with more awareness brought about to the rising number of cases, and the severity of the symptoms, more attention will be given towards finding better treatment, testing, and maybe one day a vaccine for Lyme.

If you would like to know more about Lyme, check out our Guest Series Recorded Webinar: Lyme Disease Tips & Tricks 2020 (w/Libby Ernharth PA-C). She shares some great information as well as visuals on different ways a rash can present itself with Lyme.

As always the CDC is also a good resource. There are a number of free publications, posters, and bookmarks with information about Lyme, available to order.

We all want to enjoy the outdoors and our summer. Just remember to stay safe and check yourself and those that you support for ticks when in areas that may put you at risk. Prevention is the key.

Jenifer Baker, RN

Jenifer is a Registered Nurse at Milestone HCQU West.

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