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Ever heard of Lyme disease? Want to know how to avoid getting infected? Read on and you will discover many interesting facts that you may already know and some that you don’t know, but hopefully this information will help keep you healthy and safe. Lyme disease is the most frequent tickborne disease in North America with around 200,000 cases reported since 2003 and 20,000 new cases reported each year. It is a bacterial infection caused by a bite from a deer tick infected with the bacterium Borrelia burgdorferi. The disease is named “Lyme” after the rural towns of Lyme and Old Lyme, Connecticut where the first symptoms emerged in 1975. The Lyme disease bacterium causes a variety of early symptoms that often first appear to be caused by other illnesses, resulting in a high rate of misdiagnosis among patients. Lyme disease is typically curable with early diagnosis and antibiotic treatment, but approximately 10-20% of patients will experience what is known as “Post-Treatment Lyme Disease Syndrome” (PTLDS), sometimes called “Chronic Lyme Disease,” a disabling, long-term condition.
What are the Symptoms of Lyme Disease?

  • Bull’s-Eye Rash: An expanding rash that radiates outward from the site of the tick bite and resembles a bull’s eye. Usually appears 1 to 2 weeks after infection in 80-90% of Lyme disease cases (which means that there is a 10-20% chance that a person could be infected and not experience the rash). This rash doesn’t always appear as a bull’s eye and can be solid red and round or oval-shaped.
  • Early-stage Lyme disease (1 to 4 months after infection):

o   Migrating tendon and joint pain
o   Headache
o   Stiff neck
o   Facial palsy (facial paralysis)
o   Tingling or numbness in arms and legs
o   Enlarged lymph glands
o   Abnormal pulse
o   Sore throat
o   Changes in vision
o   Fever
o   Severe fatigue

  • Late-stage Lyme disease (untreated after 4 months)

All of the above symptoms, plus:
o   Disabling neurological symptoms (disorientation, confusion, dizziness, memory loss, inability to concentrate or follow a conversation, mental fog)
o   Heart problems (rare)
o   Arthritis in two or more joints

Who is Most at Risk?

Any person of any age can become infected with Lyme disease, but those especially at risk are people who live in or around the forested regions of northeastern and north-central United States where the main sources of food for deer ticks (deer, large mammals, and wild rodents) usually live (Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Vermont, Virginia, and Wisconsin).

Engaging in outdoor activities such as camping, hiking, fishing, and gardening in these regions can increase the likelihood that a person will be exposed to deer ticks.Diagnosis

Lyme disease can be very challenging to diagnose for a variety of reasons. The initial symptoms of Lyme disease can mimic the symptoms of other illnesses such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis, lupus, and other illnesses. This means that a person’s symptoms might not be immediately recognized as resulting from Lyme disease, delaying accurate treatment.

Lyme disease can also be difficult to diagnose because blood tests for the disease test for antibodies in the blood. The human body builds up antibodies to fight bacteria when it detects an infection. It takes time for the body to do this, and this gap in time can mean that patients who have been very recently infected can test negative for the disease (a false negative). In addition, other bacterial infections can be mistakenly reported as Lyme disease, leading to the diagnosis of people who do not really have the disease (a false positive).

To add to this difficulty, the characteristic bull’s eye rash that is specific to Lyme disease does not appear in every infected person, so it cannot be used as a definite indicator that a person has or doesn’t have the disease.

If you suspect that you have been bitten by a tick and might have Lyme disease, your best course of action is to contact your doctor. Your doctor will likely make a diagnosis based on your reported symptoms, signs such as the bull’s eye rash, and blood tests to detect Lyme disease antibodies in your blood.

Treatment

Most patients who are diagnosed early and receive accurate antibiotic treatment recover from Lyme disease quickly and completely. Patients who are diagnosed later may take longer to recover or have additional complications.

The standard treatment for Lyme disease involves taking a course of oral antibiotics such as doxycycline, amoxicillin, or cefuroxime axetil for a period of approximately 2-4 weeks. There are some cases where patients mean need IV treatment. This treatment would be used with drugs like ceftriaxone or penicillin, in extreme cases.

Post-Treatment Lyme Disease Syndrome (PTLDS)

Some patients will continue to experience symptoms of Lyme disease such as aching joints, severe fatigue, headache, cognitive problems, vision problems, and facial paralysis after they have received the recommended treatment and should be symptom-free. This occurrence is known as “Post-Treatment Lyme Disease Syndrome” (PTLDS) and occurs in approximately 10-20% of cases. Post-treatment symptoms can last anywhere from 6 months to several years after the infection was treated. Doctors are unsure of the exact cause of PTLDS and theorize that it may be caused by tissue damage or damage to the immune system that occurred during infection. Because the origin of PTLDS is not known, no standard course of treatment exists and many patients are left with few options for the relief of their symptoms and experience long-term debilitation as a result. The severity of their symptoms negatively affects their livelihood and ability to work. Research into the causes of PTLDS continues.

Prevention

The best way to prevent Lyme disease is to avoid direct contact with ticks. This can be accomplished by staying away from wooded or bushy areas, using insect repellent that contains DEET, and wearing protective clothing when outdoors.

It is very important to promptly remove any ticks that do become attached to your body. Ticks are small, hard to see, and tend to favor areas such as the groin, armpits, and scalp. A tick must remain attached for 36-48 hours in order to effectively transmit the Borrelia burgdorferi bacterium, so quick removal is key to preventing infection.

How do you remove a tick? Use fine-tipped tweezers to grasp the tick as close to the surface of the skin as possible and pull upward with steady, even pressure. Do not twist or jerk the tweezers as this can cause parts of the tick to break off and remain embedded in your skin. After removal, clean the bite area with rubbing alcohol or soap and water. Dispose of the tick by submersing it in alcohol or flushing it down the toilet. Never crush a tick with your fingers.

Sources: Centers for Disease Control, American Lyme Disease Foundation, National Institute of Allergy and Infectious Diseases, WebMD, Mayo Clinic

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Written by Jessica Winney

 

Human Health Project (HHP) Programs

Human Health Project (HHP) ProgramsHHP is a comprehensive holistic health literacy charity. Explore our Shared Patient Information on health conditions like Migraine and Lupus, featuring Causes/Triggers, Treatments, outcomes, and side effects (more conditions being added). Dive into our Learning Academy's short patient education video courses covering topics like Your Rights as a Patient, How to Research Online as an ePatient, and Peer-led Patient Advocacy Workshops. Don't miss our upcoming and past Peer-to-Peer event videos.