Lyme disease is described as a “quiet plague.” It is the fastest growing infectious disease in the United States. There are an estimated 400,000 new cases of Lyme disease and related illnesses every year in this country. That’s more infections that HIV/AIDS, Hepatitis C, colon cancer or breast cancer. Lyme disease (LD) has the potential to affect everyone who goes outdoors.

If you don’t know much about LD, you’re not alone. Even the medical community admits low awareness about the disease, how to test for it, its symptoms and best treatment.

LD is seriously under-reported in Arkansas and across the nation. The Centers for Disease Control and Prevention (CDC) say that nationwide about 30,000 cases were reported to the CDC in 2010. However, a recent analysis of insurance claims data from all 50 states reported 329,000 cases in 2010. The number of new cases has skyrocketed in the last 20 years. Even 400,000 new cases this year may be a very low estimate.

How do you get it?

Lyme disease is a bacterial infection you can get if an infected tick bites you. Not all ticks are infected and not all tick bites will make you sick. Ticks get LD from deer, mice, birds and squirrels that carry it. LD is the most common disease carried by animals in the Northern Hemisphere.

Ticks can carry many bacteria, viruses, fungi and transmit them all in a single bite. Researchers have identified more than 12 types of LD and related conditions and they are increasing in number. About half of LD-infected patients have at least one co-infection. The most common are Babesia, Bartonella, Ehrlichia, Mycoplasma, Rocky Mountain Spotted Fever, Anaplasma and Tularemia. Co-infections cause more severe illness, more symptoms and a longer recovery.

Experts believe climate change and human expansion into formerly wooded or wild areas have combined to cause the huge increase in LD cases over the past 20 years. As climate change creates warmer weather, the tick season gets longer and the mouse population grows. Researchers think mice are the main source of tick infection.

What are the symptoms?

Symptoms vary widely among infected persons and are somewhat different for adults and children. Symptoms can show up within two to 30 days. They can also reoccur years after the initial infection and trigger what is called chronic LD.

If treated early, LD is curable and most patients make a full recovery. However, if diagnosis and treatment is delayed, or if symptoms are diagnosed as another illness, the bacteria can continue to cause damage, long-term disability and even death. LD progresses to chronic LD in at least 10 percent of patients, according to the National Institutes of Health.

Chronic LD, an autoimmune disorder, can affect the brain and cause cognitive problems and mental illness, including anxiety, dementia, depression, manic episodes (rapid and wide mood swings), psychosis and schizophrenia. It can ravage the heart, central nervous system and brain. Patients are unable to work or lead a normal life; many also have chronic pain. Further treatment does not seem to help. Other tick-borne diseases can cause chronic LD or make the symptoms worse and lengthen recovery.

About 20 percent of babies born to LD-infected mothers will contract LD at birth. This can cause life-threatening defects in the infant. Mothers with LD also have a higher risk of stillbirths.

Many doctors have difficulty pinpointing LD because its symptoms overlap with symptoms for ALS, Alzheimer’s disease, chronic fatigue, depression, fibromyalgia, multiple sclerosis, Parkinson’s disease and rheumatoid arthritis, according to lymedisease.org

A large percentage of LD-infected persons do not seek treatment because they don’t know they’re having LD symptoms. For example, the symptom most people associate with LD – a bull’s-eye rash – happens to less than 10 percent of LD patients. Some people have a generic, diffused rash but no bull’s eye.

The most common symptoms of early LD and the percentage of people who have it are:

  • Fatigue – over 75 percent
  • Headache – 70 percent, especially common in children
  • Rash – less than 70 percent (starts a few days to several weeks after the bite and may look like a bruise)
  • Fever – 60 percent
  • Sweats and chills – 60 percent
  • Muscle pain – 54 percent
  • Joint pain – 48 percent (not common in children)
  • Neck pain or stiffness – 46 percent
  • Sleep issues – 41 percent
  • Bull’s-eye rash – less than 10 percent
  • Other, less-common symptoms include a flu-like illness, nausea or vomiting, lightheadedness, fainting, shortness of breath, heart palpitations, chest pain, facial drooping and shooting pains that interfere with sleep. Children more frequently have mood disturbances.

Chronic LD symptoms can include the early symptoms listed above, plus these:

  • Cognitive issues – 66 percent
  • Depression – 62 percent
  • Neuropathy (nerve pain, numbness, tingling, hot/cold sensations) – 61 percent
  • Heart problems – 31 percent
  • Other chronic LD symptoms include digestive problems, stomach pain, muscle pain and antibiotic-resistant pneumonia.

How is it diagnosed and treated?

Diagnosis is made using two tests. If the blood test is positive, another test is given to confirm the diagnosis. The first test must be given within a few weeks of infection to be accurate.

The standard treatment is several weeks of oral antibiotics. But, because LD is frequently misdiagnosed, less than half of initially infected people get this treatment. That can set them up for chronic LD in the future.

Getting an accurate diagnosis can be difficult because LD is hard to pinpoint for these reasons:

  • There are at least 12 known strains of LD and hundreds of other tick-borne diseases. Current lab tests can only identify a few of these. That means about 70 percent of infected people are not identified and don’t get early treatment. For most people, early treatment provides a very good chance of a cure.
  • Early treatment depends on having a doctor who is familiar with LD and related diseases. There are no specialists for LD in Arkansas, according to a recent LD proclamation from Gov. Hutchinson’s office.
  • You must be tested during a two-week window, four to six weeks after being bitten. The test detects antibodies that your body produces in response to the bacteria causing the infection. False negatives are very common in testing if it’s done too early or too late. It can take up to four weeks for your body to start producing antibodies. Since most people do not know when they were bitten, testing misses the majority of LD infections. The patient fails to get the crucial antibiotics and follow-up.
  • Your test results must be sent to a lab that’s familiar with these tests.
  • Someone who is experienced in LD identification must interpret your lab results. Interpreting them is difficult because most clinicians have a low awareness of the symptoms and diagnosis methods, according to the CDC.
  • An official diagnosis from the CDC requires objective findings such as positive blood tests, symptoms like Bell’s palsy (partially drooping face muscles) or joint swelling. However, these symptoms are not common, contributing to a severe undercounting of cases. About 66 percent of cases are missed using CDC test standards.

The CDC does not recommend testing for LD if a tick has bitten you but you do not have LD symptoms. Don’t worry about identifying the type of tick that bit you; all ticks can transmit disease and 23 species of ticks can carry LD.

Prevention tips

The most effective method to prevent LD and related diseases is never let a tick touch you and certainly not bite you. You cannot feel a tick bite because tick saliva contains a substance that numbs skin. Tick saliva also fights the body’s defenses so the germs have a better chance of infecting you. Less than half of LD-infected persons remember seeing a tick on them; only 20 percent remember having a tick bite.

To avoid tick bites and prevent this potentially devastating disease, the International Lyme Association recommends these precautions:

  1. Prevent all contact with ticks by spraying shoes, clothing and exposed skin with repellent during tick season – from early spring through fall. June, July and August are the peak months for LD infections. Those who sprayed their footwear had 74 percent fewer tick bites.
  2. Wear repellent when gardening, doing yard work or any activities in the woods or long grass. Repellents containing DEET, permethrin, picaridin or lemon eucalyptus oil are most effective. Natural insect repellents using essential oils are also available.
  3. Wear light-colored clothes and shoes to see ticks better.
  4. Wear socks and shoes that cover the feet (no sandals).
  5. Wear long pants, tucked into your socks, and a long-sleeved shirt, tucked in.
  6. Wear a hat or scarf if you pass under trees; tie back long hair.
  7. Check yourself frequently for ticks while outside. LD transmission can happen in less than an hour.
  8. Avoid playing in leaves, gathering firewood and leaning against tree trunks because ticks stay near the ground. Stay on cleared trails instead of walking across grassy fields.
  9. Undress in a shower stall or dry bathtub, so you can see the ticks that drop off.
  10. Immediately put all clothing into a dryer at high heat (185 degrees) for at least six minutes. Washing clothing first will not kill many ticks and you will have to dry the clothes in a hot dryer for at least 50 minutes. Dry at maximum heat six minutes; wash in hot (130 degrees) water, then dry normally.
  11. Do a full-body tick check before bathing. Ticks can survive a bath or shower. Pay special attention to underarms, groin, belly button, neck, hair, in and behind ears, behind knees, and wherever clothing fits snuggly, such as a waistband. Feel for ticks or use a mirror if you don’t have anyone to check your back. Parents should check their children for ticks.
  12. Check your outdoor pets for ticks frequently. Your veterinarian can advise you about the most effective tick-prevention methods.
  13. Landscaping practices can help: Keep your grass mowed, remove brush and leaves, and create a barrier along tree lines with wood chips or mulch. Ticks like grassy, wooded and leaf-covered areas and dark wet places. They can also fall from trees.
  14. Get rid of mice as soon as you see them or their droppings. Mice are the primary way that ticks get LD.
  15. Promptly remove a tick that bites you. A biting tick can give you LD or other tick-borne diseases within three to 24 hours. However, other researchers say it only takes 15 minutes to transmit LD.

Correct tick removal

Using the correct method to remove a tick that’s bitten you can prevent infection:

  • Grasp the tick’s body firmly, as close to your skin as possible, using a fine-pointed tweezers.
  • Pull the tick’s head straight out, using steady even pressure, without twisting.
  • Disinfect the bite site and wash your hands after removing a tick.
  • Dispose of the tick by flushing down the toilet.
  • Use a credit card to slide under the tick in an emergency. Press upward at the mouth until the tick pulls itself out.
  • Never use a hot match, Vaseline, liquid soap, nail polish, nail polish remover, lighter fluid or other chemicals to remove the tick. These methods can make the tick vomit germs into you. The spirochetes that cause LD and related infections are in the tick’s gut, not its mouth.

If you go outside you are vulnerable to Lyme disease and many other tick-borne diseases. While early treatment can cure it; delayed diagnosis and treatment can mean a lifetime of serious illness, disability, even death.

Get serious with prevention. Don’t let ticks even touch you or your pets. It’s the most effective way to avoid Lyme disease.

To learn more

Visit these websites:

Lymedisease.org is an advocacy, education and research organization

Ilads.org is the International Lyme and Associated Diseases Society

Arklf.com is the Arkansas Lyme Foundation