Lyme Disease Awareness

Lyme disease is an underreported, under-researched, and often debilitating disease transmitted by spirochete bacteria. The spiral-shaped bacteria, Borrelia burgdorferi, are transmitted by blacklegged deer ticks. Lyme’s wide range of symptoms mimic those of many other ailments, making it difficult to diagnose (1, 2Trusted Source). The blacklegged ticks can also transmit other disease-causing bacteria, viruses, and parasites. These are known as coinfections (1). These ticks that transmit Lyme are increasing their geographical spread. As of 2016, they were found in about half the counties in 43 of 50 states in the United States (3).
Lyme is the fifth most reported of notifiable diseases in the United States, with an estimated 329,000 new cases found annually (4Trusted Source). But in some states, estimates suggest that Lyme disease is profoundly underreported (4Trusted Source). Some studies estimate that there are as many as 1 million cases of Lyme in the United States every year (5). Most people with Lyme who are treated right away with three weeks of antibiotics have a good prognosis. But if you’re not treated for weeks, months, or even years after infection, Lyme becomes more difficult to treat. Within days of the bite, the bacteria can move to your central nervous system, muscles and joints, eyes, and heart (6, 7). Lyme is sometimes divided into three categories: acute, early disseminated, and late disseminated. But the progression of the disease can vary by individual, and not all people go through each stage (8Trusted Source). Every individual reacts to the Lyme bacteria differently. You may have some or all of these symptoms. Your symptoms may also vary in severity. Lyme is a multi-system disease.

Whether or not you see the tick bite or the classic Lyme rash, your early symptoms are likely to be flu-like. Symptoms are often cyclical, waxing and waning every few weeks (12Trusted Source). Tiredness, exhaustion, and lack of energy are the most frequent symptoms. The Lyme fatigue can seem different from regular tiredness, where you can point to activity as a cause. This fatigue seems to take over your body and can be severe. You may find yourself needing a nap during the day or needing to sleep one or more hours longer than usual. In one study, about 84 percent of children with Lyme reported fatigue (8Trusted Source). In a 2013 study of adults with Lyme, 76 percent reported fatigue (15Trusted Source). Sometimes Lyme-related fatigue is misdiagnosed as chronic fatigue syndrome, fibromyalgia, or depression (8Trusted Source). In some Lyme cases, fatigue can be disabling (16).

Other common flu-like symptoms are headaches, dizziness, fever, muscle pain, and malaise. About 50 percent of people with Lyme disease have flu-like symptoms within a week of their infection. Your symptoms may be low-level, and you may not think of Lyme as a cause. For example, when fever occurs, it’s usually low-grade. In fact, it can be difficult to distinguish Lyme flu symptoms from a common flu or viral infection. But, unlike a viral flu, for some people the Lyme flu-like symptoms come and go. Here are a few statistics from different studies of Lyme patients:

• Seventy-eight percent of children in one study reported headaches (8Trusted Source).
• Forty-eight percent of adults with Lyme in one study reported headaches (20).
• Fifty-one percent of children with Lyme reported dizziness (8Trusted Source).
• In a 2013 study of adults with Lyme, 30 percent experienced dizziness (15Trusted Source).
• Thirty-nine percent of children with Lyme reported fevers or sweats (8Trusted Source).
• Among adults with Lyme, 60 percent reported fever in a 2013 study (15Trusted Source).
• Forty-three percent of children with Lyme reported neck pain (8Trusted Source).
• A smaller number of children with Lyme reported sore throats (8Trusted Source).

There are many kinds and degrees of cognitive disturbances, and they can be scary. You may notice that you have difficulty concentrating in school or at work. Your memory may have lapses that weren’t there before. You may have to reach to remember a familiar name. You may feel as though you’re processing information more slowly. Sometimes when driving or taking public transportation to a familiar place, you may forget how to get there. Or you may be confused about where you are or why you’re there. You might get to a store to shop, but entirely forget what it was that you were supposed to look for. You might at first attribute this to stress or age, but the decline in capabilities may worry you.

Here are some statistics:

• Seventy-four percent of children with untreated Lyme reported cognitive problems (8Trusted Source).
• Twenty-four percent of adults with early Lyme reported difficulty concentrating (15Trusted Source).
• In later Lyme, 81 percent of adults reported memory loss (21).

Neurological symptoms can be subtle and sometimes specific. In general, you may feel unsure of your balance or less coordinated in your movements. Walking down a slight incline on your driveway might take an effort that it never did before. You might trip and fall more than once, although this never happened to you before. 

Some Lyme effects are very specific. For example, the Lyme bacteria may affect one or more of your cranial nerves. These are the 12 pairs of nerves that come from your brain to your head and neck area. If the bacteria invade the facial nerve (the seventh cranial nerve), you can develop muscle weakness or paralysis on one or both sides of your face. This palsy is sometimes mistakenly called Bell’s palsy. Lyme disease is one of the few illnesses that cause palsies on both sides of the face. Or you may have numbness and tingling on your face. 

Other affected cranial nerves can cause loss of taste and smell. A Centers for Disease Control and Prevention (CDC) study of 248,074 reported Lyme disease cases nationwide from 1992 to 2006 found that 12 percent of Lyme patients had cranial nerve symptoms (9Trusted Source).

As the Lyme bacteria spread through the nervous system, they can inflame the tissues where the brain and spinal cord meet (the meninges).

Some of the common symptoms of Lyme meningitis are neck pain or stiffness, headache, and light sensitivity. Encephalopathy, which alters your mental state, is less common. These neurological symptoms occur in about 10 percent of adult individuals with untreated Lyme disease (18).

Lyme bacteria can invade your heart tissue, a condition called Lyme carditis. Carditis can range from mild to severe. The bacterial interference in your heart can cause chest pains, light-headedness, shortness of breath, or heart palpitations (23Trusted Source). The inflammation caused by the infection blocks the transmission of electrical signals from one chamber of the heart to the other, so the heart beats irregularly. This is known as heart block. Lyme can also affect the heart muscle itself. 

How common is Lyme carditis? Here are some statistics:

• The CDC reports that only 1 percent of reported Lyme cases involve carditis (23Trusted Source).
• Other studies report that 4 to 10 percent of Lyme patients (or more) have carditis (24Trusted Source, 25). However, these figures may include a broader definition of carditis.
• Children can also have Lyme carditis (24Trusted Source).

With treatment, most people will recover from an episode of Lyme carditis. However, it has caused occasional deaths. The CDC reported three sudden Lyme carditis deaths from 2012–2013 (26Trusted Source). Also, in some cases if the heart block cannot be corrected, a pacemaker may be needed.

Some people with Lyme may have sharp rib and chest pains that send them to the emergency room, suspecting a heart problem (27). When no problem is found, after the usual testing, the ER diagnosis is noted as an unidentified “musculoskeletal” cause. You can also have strange sensations like skin tingling or crawling, or numbness or itchiness (27). Other symptoms have to do with cranial nerves.

• Ear-ringing (tinnitus). Tinnitus can be a nuisance, especially at bedtime when it seems to get louder as you’re trying to fall asleep. About 10 percent of people with Lyme experience this (15Trusted Source).
• Hearing loss. One study reported that 15 percent of Lyme patients experienced loss of hearing (28).
• Jaw pain or toothaches that are not related to actual tooth decay or infection.

The best way to prevent Lyme disease is to avoid tick bites when you are outdoors. Most ticks attach themselves to your lower legs and feet as you walk or work in grassy, wooded areas or overgrown fields. After a tick attaches to your body, it often crawls upward to find a spot to burrow into your skin. If you're in or plan to be in an area where ticks are likely to live, follow these tips to protect yourself. Use tick repellents 

• Spray your outdoor clothing, shoes, tent and other camping gear with a repellent that has 0.5% permethrin. Some gear and clothing may be pre-treated with permethrin.
• Use an insect repellent registered with the Environmental Protection Agency on any exposed skin, except your face. These include repellents that contain DEET, picaridin, IR3535, oil of lemon eucalyptus (OLE), para-menthane-diol (PMD) or 2-undecanone.
• Do not use products with OLE or PMD on children under age 3.

 Dress for protection 

• Wear light-colored clothing that makes it easier for you or others to see ticks on your clothing.
• Avoid open-toed shoes or sandals.
• Wear long-sleeved shirts tucked into your pants.
• Wear long pants tucked into your socks.

 Check for ticks 

• Shower as soon as possible to wash off any loose ticks. Check for ticks that may have burrowed.
• Use a mirror to check your body well. Pay attention to your underarms, hair and hairline. Also check your ears, waist, and the area between your legs, behind your knees, and inside your bellybutton.
• Check your gear. Before you wash your outdoor clothes, put them in the dryer on hot for at least 10 minutes to kill ticks.
• Do a daily inspection for ticks on any pet that spends time outdoors.
• Stay on clear paths as much as possible in wooded and grassy areas.

Remember: If you have any of the above-mentioned symptoms, ask your doctor to include testing for Lyme as part of the assessment. This currently isn't common practice and oftentimes why the disease is mis-diagnosed or undiagnosed. Treating some symptoms doesn't treat the root cause.

Lyme disease - Symptoms and causes - Mayo Clinic