WHAT IS LYME DISEASE?

Lyme disease is an inflammatory disorder begun by receiving a bite from a tick that is infected by a bacterium. The bacterium enters the body at the spot of the tick bite, and begins to multiply and travel to different parts of the body. If untreated, it can progress to produce an infection that can take a variety of forms, but usually involves chronic inflammation affecting joints, the nervous system, the heart and the skin.

This disease has only been recognized since November 1975 when 12 children of a small rural community, Old Lyme, Connecticut, were diagnosed with juvenile rheumatoid arthritis. Nearby several other people also reported a similar type of arthritis that came on suddenly. Research was done and 51 individuals were found to have developed the same disorder in a small geographical area and at the same time of the year. Most had brief attacks of pain and swelling involving a few large joints, and many reported having noticed a peculiar, expanding, red skin area several weeks beforehand. One recalled being bitten by a tick at the site of the skin lesion. The type of rash was recognized as one that had been known to occur in Europe, where it had been associated with the bite of a sheep tick.

HOW COMMON IS LYME DISEASE?

The incidence of Lyme disease seems to have increased over the years, but this may only be due to wider recognition of the symptoms and disease. The exact number of people affected by Lyme disease is not known.

Lyme disease occurs widely in Europe, the Soviet Union, China, Japan and Australia. In North America it is most common in the northeast and north central regions, and so far has been less common on the west coast. While cases have been reported from most states and provinces in North America, the majority of cases occur in just a few. In Canada, the greatest number of confirmed cases have been in Ontario, while there have been no confirmed cases in Newfoundland, Prince Edward Island, the Yukon and the Northwest Territories.

Because there are more and more people these days engaging in outdoor activities such as hiking, hunting and climbing this may have caused an increase in the incidence of Lyme disease. These people more frequently encounter deer or are in areas where deer have been. The tick that passes Lyme disease along is called a deer tick. It often lives on and is carried from one area to another by deer.

Cases of Lyme disease have occurred in people of all ages, but the peak incidence is in people between the ages of 11-14 or in young adulthood.

Most cases begin in the summer. In areas that have mild winters the pattern is less seasonally specific.

WHAT ARE THE WARNING SIGNS OF LYME DISEASE?

• There are three separate stages of Lyme disease. Each has different symptoms.
• In the first stage a skin rash may appear at the site of a tick bite. The area may feel hot to the touch, but is usually not painful. The rash grows in size over time. The rash may develop anywhere from a few days up to month after the tick bite.
• 30% of people who develop Lyme disease do not get this rash.
• Fatigue, headaches, fever, chills, aching joints and muscles, and skin sores or rashes often appear during the second stage
• In the third stage Lyme disease may spread to affect areas of the body like the heart and the nervous system.

Localized early disease stage

The onset of Lyme disease is called the localized early disease stage. If you have been infected with Lyme disease you may get a skin rash at the site of a tick bite. Common bite locations are the groin, the buttock, behind the knee or in the armpit. The rash may appear anywhere from a few days to a month after the tick has bitten. It may feel hot to the touch and is usually red around the outside with a clear centre. Beginning as a small area, it expands slowly in size over several days. It is usually not painful. Many people do not realize a tick has bitten them, and about one-third of people do not develop this rash.

Secondary stage

Within several days of the appearance of the skin lesion, many people develop symptoms and evidence of more widespread infection. This is called the secondary stage of the disease. In this stage, you could have a vague feeling of discomfort or uneasiness, feel sluggish or fatigued, get headaches, and have fever and chills. You might also have aching joints and muscles, and develop skin sores or rashes on various parts of your body.

Third stage

About 20% of people with Lyme disease have remission after the secondary stage has passed. Most people, however, will move into the third stage of the disease. In this stage you could develop other problems that involve the heart, nervous system and joints.

Inflammation of the heart, called carditis, develops in fewer than 10% of people with untreated Lyme disease. Initial symptoms can include rapid beating of the heart (palpitations) or unexplained fainting. This condition may pass on its own, but it sometimes requires medical intervention.

If your nervous system becomes inflamed you could early on in the disease experience headaches, irritability, sensitivity to bright light and lethargy. In about 15% of people, meningitis (characterized by headache and the classic neck stiffness) may occur a few weeks after the initial rash.

Other symptoms indicating involvement of the disease in the brain and the nerves may occur months to years after the disease onset. Nerves in the limbs or around the head may be affected, and you could experience muscle weakness, paralysis or loss of sensation. Bell's palsy, a condition that results in weakness or paralysis of the facial muscles, can occur. If the disease affects your brain, you may experience short-term memory loss, have difficulty concentrating, and suffer from chronic fatigue, headaches and sleep disturbance. In rare cases the disease can cause seizures and lesions on the spinal cord.

Pain in the muscles and joints is common early on in Lyme disease. Many people experience spontaneous improvement of the pain, or a diminishment of it over time. In about 20% of people with untreated Lyme disease, this inflammation - or arthritis - of the joints can become chronic. 

Most people with advanced Lyme disease experience attacks of arthritis involving one or only a few joints. Usually it is the large joints, such as the knees, that are affected. Involvement of many joints is uncommon. Attacks can last a few days to a few weeks. In children the arthritis is usually much milder. Despite the ongoing inflammation, it is unusual for it to result in damage to the cartilage and bone, as may occur more commonly in other forms of arthritis.

WHAT CAUSES LYME DISEASE?

The cause of Lyme disease is a spiral-shaped bacterium (spirochete) called Borrelia burgdorferi. A tick can carry this bacterium in its body, and transfer it to its host when biting through the skin. The type of tick that carries this bacterium most often bites and sucks the blood of deer, and so is called a deer tick, but it will also bite humans and any other mammals.

WHAT PRECAUTIONS CAN YOU TAKE TO AVOID LYME DISEASE?

• Wear protective clothing to limit the access of ticks to your skin. This clothing includes long-sleeved shirts that fit tightly around the wrist and long-legged pants tucked into socks or boots.
• Insect repellents containing DEET can effectively repel ticks and repellents can be applied to clothing as well as exposed skin. Follow the manufacturer's instructions. Directions may vary by age.
• Check for ticks on clothing or attached to your skin after working in tick-infested areas. A daily total-body inspection and prompt removal of attached ticks (i.e., within 18 to 24 hours) can reduce the risk of infection.
• Carefully remove attached ticks using tweezers. Grasp the tick's head and mouth parts as close to the skin as possible and pull slowly until the tick is removed. Do not twist or rotate the tick and try not to damage the tick (i.e., squash or crush it) during removal.
• After removing ticks, wash the site of attachment with soap and water or disinfect it with alcohol or household disinfectant.

WHAT CAN YOU DO ABOUT LYME DISEASE?

Most of the time Lyme disease can be cured if it is treated promptly and properly. However, without treatment the disease can continue to progress and affect more parts of the body. 

Establishing the correct diagnosis is important, so if your doctor thinks you have Lyme disease, he or she may ask questions about your symptoms, other medical conditions, recent travel, illnesses, and contact with people who may have had infections. He or she may perform a physical examination, and look for evidence of a rash. X-rays and other tests might be ordered to find out whether the infection and inflammation is being caused by a germ.

It is often difficult to diagnose Lyme disease because of the variation in symptoms and the course of the disease. There is also no routine definitive test to determine if Lyme disease is the cause of illness.

The main objective in the treatment of Lyme disease is to control the pain and inflammation and to eradicate the infection. Your active involvement in developing your treatment plan is essential.

Medicine

If you have Lyme disease your doctor will probably prescribe antibiotics. Depending on your symptoms the length of time you will have to take antibiotics may vary. Lyme disease is most responsive to antibiotic therapy early in the disease. However, in some people who are given antibiotics early on, the disease still progresses to later stages. Those who develop later stage Lyme disease that affects the heart or nervous system are often hospitalized and given larger amounts of antibiotics intravenously (in a liquid form, through a tube inserted directly into a blood vessel).

For mild to moderate pain associated with Lyme disease doctors often recommend acetaminophen (Tylenol®, Panadol®, Exdol® , etc.). Acetaminophen is a pain reliever, but has no anti-inflammatory properties. For this reason it can usually be safely taken along with most prescription medications. However, there are daily limits of acetaminophen that can be taken, so caution should be exercised, particularly if other medications that contain acetaminophen (for example, it's found in many cold remedies) are being used. A serious overdose of acetaminophen can cause liver damage.

NSAIDs reduce pain when taken at a low dose, and relieve inflammation when taken at a higher dose. NSAIDs such as ASA (Aspirin, Anacin, etc.) and ibuprofen (Motrin IB, Advil, etc.) can be purchased without a prescription. Examples of NSAIDs that require a prescription include Naprosyn, Relafen, Indocid, Voltaren, Feldene, and Clinoril. The various NSAIDs and Aspirin® , if taken in full doses, usually have the same levels of anti-inflammatory effect. However, different individuals may experience greater relief from one medication than another. Taking more than one NSAID at a time increases the possibility of side effects, particularly stomach problems such as heartburn, ulcers and bleeding. People taking these medications should consider taking something to protect the stomach, such as misoprostol (Cytotec).

You may find general information in Arthritis Medications: A Consumer's Guide [PDF] even if your disease is not specifically addressed.

Exercise

As the infection of Lyme disease subsides, your doctor may instruct you to do exercises that strengthen your muscles. Exercises to improve the range of motion of the joints will also assist with your ability to resume normal activities. Always consult a doctor before beginning an exercise program.

Heat and Cold

Heat or cold application can provide temporary relief of pain. Heat helps to reduce pain and stiffness by relaxing aching muscles and increasing circulation to the area. There is some concern that heat may worsen the symptoms in an already inflamed joint. Cold helps numb the area by constricting the blood vessels and blocking nerve impulses in the joint. Applying ice or cold packs appears to decrease inflammation and therefore is the method of choice when joints are inflamed.

Protect Your Joints

Protecting your joints means using them in ways that avoid excess stress. Benefits include less pain and greater ease in doing tasks. Three main techniques to protect your joints are:

Pacing, by alternating heavy or repeated tasks with easier tasks or breaks, reduces the stress on painful joints and allows weakened muscles to rest.

Positioning joints wisely helps you use them in ways that avoid extra stress. Use larger, stronger joints to carry loads. For example, use a shoulder bag instead of a hand-held one. Also, avoid keeping the same position for a long period of time.

Using helpful devices, such as canes, luggage carts, grocery carts and reaching aids, can help make daily tasks easier. Small appliances such as microwaves, food processors and bread makers can be useful in the kitchen. Using grab bars and shower seats in the bathroom can help you to conserve energy and avoid falls.

Relaxation

Developing good relaxation and coping skills can give you a greater feeling of control over your Lyme disease and a more positive outlook.