Information from LymeDisease.org:

Lyme disease is a bacterial infection primarily transmitted by Ixodes ticks, also known as deer ticks, and on the West Coast, black-legged ticks. These tiny arachnids are typically found in wooded and grassy areas. Although people may think of Lyme as an East Coast disease, it is found throughout the United States, as well as in more than sixty other countries.

The Centers for Disease Control and Prevention estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher.

Lyme disease affects people of all ages. The CDC notes that it is most common in children, older adults, and others such as firefighters and park rangers who spend time in outdoor activities and have higher exposure to ticks.

LymeDisease.org has developed a Lyme disease symptom checklist to help you document your exposure to Lyme disease and common symptoms for your healthcare provider. You will receive a report that you can print out and take with you to your next doctor’s appointment.

Check Your Symptoms

What is Lyme disease?

Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.

Image of B. burgdorferi under atomic force microscope. Courtesy of Dr. Eva Sapi.

Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression. Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked.

How do people get Lyme disease?

Most people get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not even realize they have been bitten.

Once a tick has attached, if undisturbed it may feed for several days. The longer it stays attached, the more likely it will transmit the Lyme and other pathogens into your bloodstream. Refer to tick section.

If pregnant women are infected, they sometimes pass Lyme disease to their unborn children and, while not common, stillbirth has occurred. Some doctors believe other types of human-to-human transmission are possible but little is known for certain.

Where is Lyme disease found?

Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the East, Midwest, and West Coast. Rates have increased significantly over time. Some of this increase may be because of disease spread, but it is also likely that it reflects growing public awareness of the disease.

Not all ticks are infected. Within endemic areas, there is considerable variation in tick infection rates depending on the type of habitat, presence of wildlife and other factors. Tick infection rates can vary from 0% to more than 70% in the same area. This uncertainty about how many ticks are infected makes it hard to predict the risk of Lyme disease in a given region.

In the South, a Lyme-like disease called STARI (Southern Tick-Associated Rash Illness) transmitted by the Lone Star tick has been described. Scientists are still debating about what organism(s) in the Lone Star tick may cause the disease as well as the treatment of patients with a rash in the South. However, Lyme disease has been reported in certain areas of the South and Southeast and patients with STARI may be quite ill. Because of this, patients in the South with a rash should be treated. (Herman-Giddens 2014)

The risk of getting Lyme disease is often reflected in risk maps. Some maps show the number of human cases of Lyme disease reported for surveillance. These maps may not accurately reflect risk because only 10% of reportable Lyme cases are currently captured by CDC surveillance. Other risk maps show the number of infected ticks that researchers have collected in a certain area. These maps are often not accurate because many states and counties have done little or no testing of ticks in the area. The best maps of risk may be canine maps. This is because dogs are routinely screened for Lyme disease through a nationwide program as well as the close association of dogs with humans.

Symptoms of early Lyme disease may present as a flu-like illness (fever, chills, sweats, muscle aches, fatigue, nausea and joint pain). Some patients have a rash or Bell’s palsy (facial drooping). However, although a rash shaped like a bull’s-eye is considered characteristic of Lyme disease, many people develop a different kind of Lyme rash or none at all. Estimates of patients who develop a Lyme rash vary widely, ranging from about 30% to 80%.

For example, a CDC report on Lyme carditis, which can be fatal, found that only 42% of cases had a rash.

LymeDisease.org has developed a Lyme disease symptom checklist to help you document your exposure to Lyme disease and common symptoms for your healthcare provider. You will receive a report that you can print out and take with you to your next doctor’s appointment.

If Lyme disease is not diagnosed and treated early, it may become late-stage or chronic. This may also occur when early treatment is inadequate. While some symptoms of chronic or late stage Lyme disease are similar to those of early Lyme, as the graphic below shows, there are important differences. 

Lyme disease may spread to any part of the body and affect any body system. Typically, it affects more than one body system. In our survey, which drew over 5,000 responses, patients with chronic Lyme disease reported an average of three severe or very severe symptoms, with 74% reporting at least one symptom as severe or very severe.

An extensive list of symptoms of chronic Lyme disease was developed by Dr. Joseph Burrascano, a pioneer in treating chronic Lyme disease.

Many Lyme symptoms, such as fatigue, cognitive impairment, joint pain, poor sleep, mood problems, muscle pain, and neurological presentations also occur in other diseases. Hence, the symptoms of Lyme disease significantly overlap those of chronic fatigue, fibromyalgia, rheumatoid arthritis, multiple sclerosis, Parkinson’s disease, ALS, depression and Alzheimer’s disease. Many Lyme patients report being misdiagnosed with a different condition before being properly diagnosed with Lyme disease.

In order for the Centers for Disease Control (CDC) to recognize a Lyme case for surveillance purposes, there must be “objective” findings, such as positive blood tests, Bell’s palsy or joint swelling (even though Lyme blood tests are unreliable and the CDC’s accepted “objective” indicators are not common). The chart below reflects the CDC-reviewed surveillance case manifestations from 2001 to 2010.

This situation contributes to what many experts view as severe undercounting of Lyme disease by the CDC.

Early in the infection, Lyme disease may feel like the flu: fever, sore muscles, headache and fatigue. Some people may develop a highly distinctive rash, which may look like a bull’s-eye. However, many people with Lyme never knew they were bitten and never developed a rash.

The CDC reports that rashes occur in 60-80% of cases. However, the true incidence of rash is unknown because no definitive studies on humans have been done. (It wouldn’t be ethical to infect people with Lyme just to see if they develop a rash.) In LymeDisease.org’s survey of 3000 patients with chronic Lyme, 40% reported a rash. Most of the time the rash is an ordinary red area; however if it is a “bull’s-eye” shape with a darker edge, it is a definite sign of Lyme disease and needs immediate treatment.

Unfortunately this distinctive rash occurs in less than 10% of those who contract Lyme disease. (Smith, 2002) When present, the Lyme rash is more likely to be diffuse.

It starts a few days or even several weeks after the bite and then expands over a period of days or weeks to several inches across, perhaps with a central clearing. Untreated, it can last for weeks before fading, or it may fade and recur. The rash may have an irregular shape, blistering or a scabby appearance. Some rashes look like a bruise. Lyme rashes may resemble spider bites, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body.

If you develop a rash, take a photo of it and see a doctor as soon as possible. Other symptoms of early Lyme disease may include a fever, headache, fatigue, or muscle aches.

Unfortunately, diagnostic testing is unreliable in the early stages of infection, often giving false negatives. Treatment should not be delayed pending a positive test result if the suspicion of Lyme disease is high (exposure, tick bite, possible rash).

LymeDisease.org has developed a Lyme disease symptom checklist to help you document your and your children’s exposure to Lyme disease and common symptoms for your healthcare provider. You will receive a report that you can print out and take with you to your next doctor’s appointment.


 

Testing for lyme disease