When Nicole Prince went to see a doctor about her neurological symptoms, she was expecting diagnosis of a rare autoimmune disorder. She’d been experiencing numbness and tingling in her face and other extremities, weakness in her legs, migrating joint pain, fatigue, insomnia, and tinnitus.
“Lyme disease was not on my radar,” Prince said. However, she was relieved that doctors now knew what was wrong and hopeful she would get well soon. She was especially surprised to be diagnosed with Lyme disease because she’d tested negative on the CDC-approved Western blot test eight years before. “I was not aware that the Western blot test yields a high false negative rate,” Prince explained.
Prince is currently recovering. “Treatment is difficult, and I have to take it day by day,” she said. She urged people to learn what they should do if bitten by a tick, which could be carrying Lyme disease, and recommended people diagnosed with Lyme disease find a Lyme-literate doctor and work to educate themselves about this common illness that can have significant side effects.
Lyme Disease 101
It may surprise you to learn that May is Lyme disease awareness month, because most of us don’t spend a lot of time thinking about this illness. However, awareness is vital—diagnoses of Lyme disease have doubled in the last decade. The Lymelight Foundation reports that “the infection incidence has become larger than HIV.” (In fact, diagnosis of Lyme disease exceeds rates of HIV diagnosis sixfold.) More alarming than the rate of infection is the likelihood of misdiagnosis. Lyme disease has been called “the great imitator” because it looks so similar to other illnesses, especially during the beginning stages of infection. Patients should arm themselves with information about this illness—left untreated, it can develop into fibromyalgia, rheumatoid arthritis, heart problems, memory loss, psychosis, and more, even including death.
People contract Lyme disease after coming into contact with a certain bacteria (Borrelia burgdorferi) that catches a ride on deer ticks. The ticks pass these bacteria along when they bite animals or humans. If the tick carries the Lyme disease infection, the bacteria make their way through the bloodstream and come to rest in the body’s tissues, where it begins to show symptoms.
The Lyme disease infection is a multisystem inflammatory disease that starts out affecting skin tissue, but it can spread over time to the joints, nervous system, and organs if left untreated. That’s why it’s so vital to be aware of what Lyme disease looks and feels like.
Lyme Disease Symptoms
The symptoms of Lyme disease evolve and change the longer the infection progresses. We’ve grouped the Lyme disease symptoms listed here based on when you should expect the symptoms to present.
3 to 30 days after infection
Rash. Seventy to 80 percent of people who have Lyme disease will develop a spreading erythema migrans (EM) rash at the site of their tick bite. The rash begins to appear as soon as three days after infection, or as long afterward as 30 days. (On average, most people begin to see the rash a week after being bitten.) The EM rash gradually expands and can reach a diameter of a foot across. With time, the spreading red rash may fade to produce the distinctive bullseye pattern commonly associated with Lyme disease. While the rash may put off some heat, it is usually not itchy or painful. Don’t confuse a small red bump at the location of a tick bite that lasts just a day or two with the larger EM rash associated with Lyme disease.
Flulike symptoms. If it weren’t for the rash, it would be easy to mistake Lyme disease for a cold or flu. (And remember, 20 percent to 30 percent of people infected with Lyme disease won’t experience the EM rash.) The first wave of Lyme disease symptoms may include fever, headache, joint or muscle aches, chills, fatigue, or swollen lymph nodes.
Days or months after infection
EM rashes in new locations. New EM rashes may present elsewhere on the body, other than the location of the original tick bite.
Head and neck symptoms. Stiffness in the neck or headaches can be a symptom of Lyme disease, as well as inflammation in the spinal cord or brain.
Lyme carditis. Heart palpitations or an irregular heartbeat can indicate Lyme carditis, the result of Lyme disease bacteria reaching the heart. People with Lyme carditis may also experience dizziness, fainting, shortness of breath, or chest pain.
Pain and swelling. Lyme disease can result in arthritis or joint pain and swelling, nerve pain, or pain in the tendons, muscles, joints, and bones that comes and goes. Patients may also experience numbness or shooting pains in their extremities.
Facial palsy. People with Lyme disease can develop a droopiness or loss of muscle tone in the face. This can appear either on both sides of the face or just on one.
Shortness of breath/dizziness. These symptoms may present in episodes instead of as a continuous problem.
Memory problems. Short-term memory loss is one symptom that can indicate Lyme disease.
Lyme Disease Treatment
If you think you may have Lyme disease, don’t wait to see your doctor—the quicker you receive treatment, the more effective it will be. Start with a general practitioner or family doctor, although they may find it best to refer you to a specialist. If it’s only been a few weeks since you were infected, lab tests can help confirm your diagnosis.
Your doctor may prescribe antibiotics, administered orally or via IV, to help you recover. Be aware that while some alternative medicine practitioners may recommend a bismacine treatment (also known as chromacine), the FDA does not approve this remedy because high levels of bismuth could lead to bismuth poisoning, which can cause heart or kidney failure.
You can prepare for your doctor’s appointment by using the symptom survey at lymedisease.org, which provides you with a printout you can bring along to share with your doctor.
Lyme Disease Prevention
The best way to handle Lyme disease is to do everything you can to avoid getting it in the first place. The easiest approach is to avoid areas where ticks hang out—woods and brush with high grass or a covering of leaves. Be particularly wary of these locales in the warm months between April and September, when you’re more likely to encounter ticks. If you’re using a walkway or nature trail, resist the urge to go off the beaten path.
If you know you’ll be traveling in places ticks flourish, take steps to protect yourself. Limit your exposed skin by wearing long sleeves and pants. In especially brushy areas, you can tuck your shirt in and even tuck pant legs into your socks. Spray an insect repellent with at least 20 percent strength on yourself and your clothes, following instructions on the label. You can even purchase clothes treated with permethrin insecticide or treat clothing with permethrin yourself.
After you’ve been outdoors, jump in the bath or shower first thing. Use a mirror to check your entire body for ticks, including your hair. Parents should check young children and look over any pets that have been outdoors. You’re less likely to get Lyme disease if a tick is attached to you for fewer than 36-48 hours. Check objects such as luggage or camping gear that could give a tick a ride into your home. Send laundry or bedding that’s potentially been exposed to ticks through the wash with hot water. For a quick fix, just 10 minutes in the dryer on high heat will also kill ticks.
Practice caution in areas where ticks make their homes, check for ticks thoroughly when you return indoors, and keep an eye out for the signs of Lyme disease in yourself and your loved ones. While Lyme disease can masquerade as other illnesses and be easy to misdiagnose, it’s crucial to familiarize yourself with the symptoms in case you encounter them. Remember, time is of the essence when it comes to Lyme disease treatment.