Lyme disease affects thousands of people each year. Unfortunately, like many illnesses, lyme disease misinformation is rampant. If you have been recently diagnosed with lyme disease or are seeking a diagnosis, it’s vital to cut through the noise and separate truth from myths.
The best resource for understanding a lyme disease diagnosis is your personal healthcare provider. However, there are several key facts that can help you navigate testing and treatment options. In this article, we’re debunking common myths about lyme disease so you can feel empowered about your health.
What Is Lyme Disease? Common Symptoms
First, let’s discuss the basics. What is lyme disease, anyway? It’s an illness caused by a bacterium called Borrelia burgdorferi. This bacterium is primarily transmitted through the bite of an infected, black-legged deer tick. Due to this transmission route, you’ll often hear lyme described as a “tick-borne illness” or “tick-borne disease.”
The formal name for lyme disease is Lyme borreliosis. Although Borrelia burgdorferi has been infecting humans and other animals for thousands of years, it wasn’t recognized in the medical literature until 1975, when experts in Lyme, Connecticut realized that the condition was distinct from juvenile arthritis.
Lyme disease is sometimes called “The Great Imitator.” That’s because the symptoms of this tick-borne disease frequently mimic other illnesses. If you were unaware that you were bitten by a tick, you may experience symptoms of lyme disease and mistake them for something else.
Common lyme disease symptoms include:
- Rash
- Fatigue
- Headaches
- Joint pain, inflammation, and muscle aches
- Fever and chills
- Neurological symptoms, such as facial palsy
- Cognitive impairment, i.e. “brain fog”
- Cardiovascular issues (lyme carditis)
Because so many other health conditions share these symptoms, it’s imperative to get tested for lyme disease. An accurate diagnosis enables you to pursue the right treatment options.
Lyme Disease Myths vs. Facts
If you suspect you may have lyme disease, it’s important to educate yourself on the facts about this tick-borne illness. Learning the truth behind lyme disease misinformation will empower you to make more informed decisions about your care. Here are six common misconceptions about lyme disease:
Myth: Only deer ticks cause Lyme disease
It’s true that black-legged deer ticks, a species known by its scientific name Ixodes scapularis, are the primary carriers of the bacteria that causes lyme in North America. However, other tick species may also carry and transmit the Borrelia burgdorferi bacteria and related co-infections. For example, in Europe, lyme disease is most often spread by a tick species called Ixodes ricinus.
As a general rule, you should watch for symptoms and consider pursuing a lyme disease diagnosis if you’ve been bitten by any species of tick. To the untrained eye, you may not be able to tell whether a tick is Ixodes scapularis or another species – and it’s better to be safe than sorry!
Other tick species may also transmit infections, such as babesiosis, which may exhibit similar symptoms as lyme disease. If possible, pursue a battery of tests that can screen for all tick-borne diseases, not just lyme.
Myth: A bullseye rash is always present
One of the most common indicators of lyme disease is a distinct, bullseye-shaped rash. Also known as erythema migrans or EM, the presence of this rash is one of the hallmark signs of infection. The EM rash generally appears at the onset of infection. It’s used by many doctors to visually diagnose patients, especially if those same patients report a recent tick bite.
However, studies indicate that the EM rash is only present in 70-80% of lyme disease cases. In some instances, the rash may resemble common redness rather than the distinct bullseye pattern, making it easy to overlook. In other cases, patients may not notice any rash at all.
In other words, the absence of an erythema migrans rash doesn’t necessarily rule out lyme disease. If you are experiencing other symptoms and suspect you may have been infected, talk to your doctor about testing.
Myth: Lyme disease is only a risk in specific regions
Many people believe that you can only become infected with lyme disease in the northeastern and upper midwest of the United States. However, this is false. Although black-legged deer ticks are more common in these regions, Lyme disease has been reported in all 50 states, Canada, and parts of Europe and Asia.
The regional risk of lyme disease is also changing as the climate shifts and alters wildlife migration patterns. Human travel may also influence its spread. Although a human cannot transmit lyme disease to another human, they can carry ticks on shoes, clothes, and luggage. If an infected tick hitches a ride on a traveler, the Borrelia burgdorferi bacteria could potentially end up anywhere.
Myth: You’ll know when a tick bites you
Speaking of ticks, don’t assume you’ll know when you’ve been bitten. Although many people assume they’ll feel a tick bite, the truth is that tick bites are often painless. That’s because tick saliva contains a natural numbing agent. Additionally, some ticks are too small to notice. In the immature “nymph” stage, a tick is no bigger than a poppy seed!
This is why it’s vital to perform “tick checks” if you have been outdoors in a grassy or wooded area. To perform a tick check:
- Remove clothes and visually inspect your entire body
- Use a handheld mirror to examine hard-to-see areas
- Shower within two hours of exposure
- Check your clothing, shoes, and gear
- To destroy any potential ticks clinging to your clothes, throw them in the dryer on high for a minimum of 10 minutes
If you are performing a tick check for a young child, be sure to inspect hidden areas such as the armpits, behind the knees, behind the ears, and the scalp.
What should you do if you get bitten by a tick? Remove it right away. Use tweezers or a specialized tick-removing tool to grasp the tick as close to the skin as possible. Then, pull the tick straight up and out – avoid twisting or jerking to keep the tick in one piece. If it breaks into smaller parts, remove them with the tweezers. Then, clean the affected area with rubbing alcohol or soap and water.
Myth: A negative test result means you don’t have lyme disease
Testing is a crucial step in receiving a lyme disease diagnosis. However, some tests have limitations. One of the standard lyme disease tests – the ELISA test – relies on Borrelia burgdorferi antibodies, which means it may not be able to detect the presence of lyme in the early stages of infection. This means false negatives may occur.
If you have symptoms of lyme disease but your test comes back negative, consider alternative testing options. Many independent labs offer PCR testing or tests that use recombinant protein technology, which are often more accurate at detecting lyme disease. These alternative tests may provide answers for patients with persistent symptoms but negative results on traditional labs.
Myth: Lyme disease is incurable
So what happens after you’re diagnosed with lyme disease? You have options! Despite common misinformation, lyme disease is treatable – especially when caught early. Many people diagnosed with lyme disease can be successfully treated with antibiotics and will recover without issues.
But in some cases, if undiagnosed and left untreated, lyme disease may progress to a “chronic” stage known as “post-treatment lyme disease syndrome” or PTLDS. Individuals with PTLDS may require additional therapies to manage their symptoms and potential complications. Seeking a consultation with a lyme-literate doctor can help these patients explore their options for supportive care.
Learn The Truth About Lyme
Like many health conditions, lyme disease is often misunderstood by the general public. That’s why awareness and education are critical to ensure a timely, accurate diagnosis. By debunking the common myths about lyme disease and other tick-borne illnesses, you can take control of your health and make the best decisions for you.
If you’re experiencing symptoms associated with lyme disease and suspect you may be infected, seek medical care and request accurate diagnostic testing. A reliable lyme disease test will help inform the next steps in your care.