What is LYME disease?
Lyme disease is an infection caused by a corkscrew-shaped bacterium known as a spirochete (Borrelia burgdorferi). The disease is transmitted primarily by a deer tick (Ixodes scapularis.) Through a painless bite, the tick can transmit the disease to humans and animals. Lyme disease was first identified as a form of arthritis in 1975 in Lyme, Connecticut. The disease can not only cause arthritic problems, but can also lead to cardiac and neurological complications. Lyme disease has been called a great imitator as it can mimic a variety of illnesses. The severity of the symptoms of Lyme disease can vary from person to person.
Where are ticks (I. pacificus, I. scapularis, I. ricinus) found?
Worldwide: Throughout North America, Europe and Asia.
In the United States: After initially being identified in Connecticut, Lyme disease soon began to be recognized throughout the Northeast. According to the Center for Disease Control, the disease has been reported in about 46 states. However, the majority of cases have been reported in the following states: Northeast Connecticut, New Jersey, New York, Midwest Minnesota, Wisconsin.
In New York State: Suffolk and Westchester counties are areas in New York State where the highest number of cases have been reported.
What types of areas would be considered tick-infested?
Ticks live in both suburban and rural regions seem to be risk areas. Places in or near woods and surrounding areas that provide a habitat for the white-footed mouse or other potential tick carriers can be infested. Tall grassy places, such as along the side of roads or surrounding some beaches also may be tick-infested. In endemic areas, people may encounter ticks in their own backyards. The nymphs and adult ticks wait on low vegetation in wooded areas or grasslands and can attach themselves to anything that brushes by them. They do not fly or jump.
Can I get bitten by a tick while I am sitting on the beach?
The probability would be extremely low. When walking to the beach, stay on the path and avoid walking through the tall grassy areas. Deer ticks are usually attached to the long grass. If the ticks are exposed to direct sunlight on the beach, they will dehydrate quickly, so it would be very unlikely that they would be in the sand. However, stay away from the tall grass on sand dunes.
Can I get bitten by a deer tick while I am walking on the side of a road or on a trail?
The probability would be low if the roadside has been recently mowed. However, even a short walk in a tick-infested meadow or off of a road or path would increase your risk of getting bitten. Staying in developed, well maintained areas may lessen your chance, because these areas may discourage animal hosts from living in such locations and therefore decrease the chance for the tick's survival.
When are you more at risk for Lyme disease?
This is primarily a warm weather disease. The ticks normally feed from April to October; the nymphs are most active between May and August. Also, more people are outdoors during the warm weather months. Adult ticks can remain active well into the winter if the winter is mild.
So, if you live in a part of the country where the winters are mild, you can contract Lyme disease at any time, making this a 12 month a year disease for those milder areas.
Why does Lyme disease seem to be expanding its range to other areas of the U.S.?
There has been an increase in reported cases, because Lyme disease reporting has become mandatory in New York State and in other states.
More cases are being diagnosed as Lyme disease because doctors are becoming more familiar with the disease.
It is possible that the infected tick is spreading as man and animals carry these ticks to previously non-infested areas.
What animals may carry the tick (I. scapularis)?
In highly infested areas, any animal or bird that nests in grassy or wooded areas may carry a tick. Typically, the following animals are most likely to carry ticks: deer, raccoons, opossums, skunks, weasels, foxes, shrews, moles, chipmunks, squirrels and horses.
In the Northeastern United States, the white-footed field mouse seems to be a major source from which the ticks pick up the bacteria that causes Lyme disease.
Domestic pets such a dog and cat can bring ticks into the home from the outdoors.
What does the tick look like?
The deer tick is much smaller than the dog tick or wood tick, although it may be difficult to distinguish between them. The flat, eight legged adults are less than one-tenth of an inch. The immature ticks (called nymphs) are about the size of a poppy seed. The male is black and the female is dark red and black. Engorged with blood they are somewhat larger (3 times their original size) and have a bluish cast to them.
What is the life cycle of a tick?
The I. scapularis tick has a two year life cycle. Ticks eat three times in their life span. If they pick up the bacteria (spirochete) in their first meal, then they can pass the disease on to their host during their second and third meal. The following graph illustrates the life cycle of the deer tick:
Ticks pick up the Lyme disease bacterium by feeding on an infected host. They can then pass it on at later feedings to new hosts. Larval ticks are unlikely to transmit Lyme disease, however, Lyme disease can be contracted from an infected tick in either the nymph or adult stage of the tick's life. In the adult stage, only the female is likely to transmit Lyme disease; the male adult may attach but does not feed and, therefore, is unlikely to transmit the bacterium. Adult females do feed and need blood to produce the 2,600 eggs they will lay, starting the life cycle anew.
Do all tick bites lead to Lyme disease?
No. A tick must first be infected to transmit the disease. This depends on whether the tick is located in a highly endemic area. Even if the tick is infected, it may not have transferred the bacteria to you. The longer it is attached to your skin, the greater the risk of transmission. Researchers estimate that the probability of infection is low during the first twelve of hours of attachment. If an infected tick latches on you for its full feeding (1 to 3 days for a nymph, up to a week for an adult tick) you have a greater chance of contracting the disease.
If a tick has been attached for less than 24 hours,we do not generally prescribe an antibiotic but would recommend a blood test in 2-3 weeks. But remember, if a rash or flu like illness should develop, consult your physician promptly.
Do you always know if you were bitten by a tick?
Many people do not recall being bitten by a tick. The tick can transmit the disease in the nymph and adult stages of its life cycle. The nymph poses the greatest risk to humans, because it is only the size of a freckle and is not apt to call itself to your attention. Furthermore, its barbed mouth parts are so small that the bite is not usually painful and can go unnoticed.
What should I do if I am bitten?
If you discover a tick attached to you, remove it immediately. The longer the tick feeds, the greater the chance that it will have transferred the bacteria into you.
Use a pair of fine tweezers. Grasp the tick as close to your skin as possible, close to the tick's mouth, and gently pull it off. Try to make sure that the mouth parts do not remain in the skin. If they do, they should fall out by themselves in a few days. If the whole head remains in, call your doctor.
Thoroughly wash your hands and the bite area by applying rubbing alcohol.
Put the tick into a jar. Save the tick, your doctor may want to see it.
Don't try to use gasoline, petroleum jelly, kerosene, or a hot match to remove the tick. These have not been shown to be effective and may damage your skin or hair. This may cause the tick to release the bacteria into your skin.
Don't use your bare fingers, the bacteria from a crushed tick may be able to penetrate through the skin.
If you have been bitten by a tick, should you go to your doctor?
Note 1: It should be emphasized that it is the combination of many signs and symptoms that permit a doctor to make the clinical diagnosis of Lyme Disease. A single symptom, especially if it is common, general, and nonspecific (such as fatigue, or fever, or irritability), is not usually enough evidence to allow a physician to make a definitive diagnosis.
Note 2: All of the symptoms of Lyme disease may have other causes even if there is a positive Lyme blood test. Because these symptoms can be part of other diseases, it is strongly recommended that all symptoms be evaluated by a physician.
How long does it take for Lyme disease to begin after the tick bite?
Early symptoms of Lyme disease vary from person to person and usually occur within several days to a few weeks following the tick bite. The most recognized symptom is the rash which may occur in as many as three quarters of the people bitten by an infected tick.
What should I do if I am unsure about a particular bite or rash on my skin?
Consult your Physician about the rash. It is recommended that you take a picture of the rash, just in case it disappears before you have the chance to see your physician. When in doubt contact your doctor.
What does the Lyme rash look like?
The rash is called Erythema Migrans. It usually begins at the site of the tick bite; however, it can also occur a distance from the bite. It may begin as a little red pimple, and may often expand over several days. The rash grows wider often reaching three or more inches in diameter. It can eventually look like a "bulls-eye" shaped ring. The rash may vary and can appear uniformly red or black and blue. Multiple rashes can sometimes occur and may indicate dissemination of the Lyme bacteria. As a result, it is recommended that a physician examine any rash that develops following a tick bite.
The rash may disappear even if no antibiotic treatment is used. Unfortunately, the disappearance of the rash does not guarantee that the disease is cured.
Can flu-like symptoms be an early sign of Lyme disease?
Yes. During the time a person has the rash, or on occasion, without any other preceding clue, Lyme disease may start with one or more of the following symptoms:
pain in joints
loss of appetite
These symptoms may disappear within 7-10 days, although in some people the fatigue may last weeks or months.
What happens when the rash and flu-like symptoms disappear?
Patients who are not diagnosed or treated promptly can develop: arthritic complications (joint pain and swelling), neurological disorders, heart abnormalities. The majority of people who are treated promptly do not go on to develop these complications.
These complications can strike anyone with Lyme disease and may occur early in the course of the disease, or they may arise months or even years later.
What happens if you develop other complications (arthritic, neurologic, or cardiac problems) without any signs of early symptoms?
If treated promptly, the vast majority of patients may never develop other symptoms; however, Lyme disease has a wide range of symptoms and the severity of these symptoms varies from person to person. A person should consult with their physician about their symptoms. One should keep a written history of symptoms and the dates of occurrence. Keeping a yearly list of activities and vacation spots is a good idea, especially having it on hand when consulting your doctor. Many times the diagnosis of the disease is easier if the doctor is aware of the time sequence of symptoms and events.
What causes these later complications?
The exact cause is not known at this time. However, these complications appear to be caused either by the direct action of the spirochete, or by the body's immune system trying to kill the spirochete.
Can these later complications occur as the first manifestation?
Yes, sometimes the tick bite goes unnoticed and the person may not become ill with the rash or flu-like symptoms. They may develop arthritic, neurologic, or cardiac symptoms as the first symptoms.
Describe some arthritic problems caused by Lyme disease.
Joint pain and generalized achiness are common especially during the early phases.
Lyme arthritis may manifest as inflammation (swelling, warmth, or pain) in one or more joints. The knee is the most commonly involved joint, although other joints, especially wrist, shoulder, and hip may become involved.
List some of the neurological problems caused by Lyme disease:
tingling of extremities
trouble with concentration *
memory loss *
extreme fatigue *
How can Lyme disease be diagnosed?
The easiest way for Lyme disease to be correctly diagnosed, is for a physician to see the rash. In the absence of the rash, early diagnosis may be difficult. Keeping a history of the clinical symptoms and getting a blood test 4-6 weeks after the onset of infection may be of help to the physician in his or her diagnosis of Lyme disease. Through the blood test, a physician is able to detect significant levels of antibodies against the spirochete. The two most common tests that are used to determine if antibodies are present in the blood are the immunofluorescent assay (IFA) and the enzyme-linked immunosorbent assay (ELISA). Although neither test is very reliable, it is believed that the ELISA for Lyme disease is more accurate than the IFA. Both tests tend to overpredict the disease.
In patients with central nervous system (CNS) symptoms, a sample of spinal fluid may be obtained by spinal tap. A measurement of antibody levels in the spinal fluid may suggest that the patient has CNS infection.
Are there other blood tests that are used to help diagnose Lyme disease?
In several research centers, special blood tests have been developed to study the antibodies more thoroughly. The 'Western blot" helps determine the pattern and types of antibodies made by a patient during an infection. This time-consuming test may show that antibodies are present to organisms other than to the Borrelia burgdorferi spirochete of Lyme disease. Or the pattern may reveal antibody response to various B. burgdorferi proteins, suggesting that organism was the culprit.
As with all research tests, there are many problems that need to be worked out before they become widely available. Newer, more accurate, and quicker tests are being studied, but are not developed as yet.
Where can I go to get the blood test?
Your private physician can draw the blood and send it to a lab, or he can refer you directly to a laboratory in your area.
Are the blood tests reliable?
Not always. The tests may fail to diagnose Lyme disease. The ELISA test is more accurate after the first four weeks of infection. This is the time that is needed for the body's immune system to produce antibodies against infection. False positive tests may occur more frequently than false negative tests. Because of these problems with lab tests the clinical evaluation of symptoms and the examination by a physician are the most important methods of arriving at the diagnosis and treatment of Lyme disease.
What is meant by a false positive test?
The tests may read false positive (suggesting a person has Lyme disease when actually he does not). Since the tests measure antibodies, it is possible that the patient has antibodies directed against a different organism which previously infected him. If these antibodies are similar to the Lyme antibody, they may give a positive reaction in the lab test, even though they are not Lyme antibodies.
Another situation leading to false positive antibody tests can occur when a patient's illness stimulates his immune system so much that his lymphocytes produce antibodies to infectious agents that had been present years before. For example, if as a child, a person came in contact with the Lyme spirochete, his lymphocytes retain the memory for this infection. Should he develop another disease such as rheumatoid arthritis, the over-stimulated lymphocytes could produce anti-Lyme antibodies. Because the patient lives where other people have gotten Lyme disease, his doctor may test for the presence of Lyme antibodies. Even though the patient has fatigue and joint symptoms, their positive Lyme test does not mean that they have active Lyme disease. They had Lyme in the past, but their current symptoms are caused by a new illness such as rheumatiod arthritis. This situation where false positive tests occur, calls for the careful evaluation by specialists.
What is meant by a false negative test?
A test which measures antibody levels (titers) is read as negative when no antibodies are detected. If the patient really does have Lyme disease, this negative test result is called false negative. The use of antibiotics early in the illness (in the first few week following infection) can retard the development of antibodies. Antibiotics given later in the course of infection do not cause false negative results.
Another way for a false negative test to occur is if the blood tests are done before the first 4 to 6 weeks after the tick bite. The person's immune system may not have produced a large enough amount of antibodies to be detected. The test will be read as negative even though the patient has Lyme disease. Because of this, the clinical evaluation of symptoms and the examination by a physician are the most important methods of arriving at the diagnosis and treatment of Lyme disease.
Is there a test to measure the actual spirochete in the blood?
Unfortunately, not yet. This particular spirochete is very difficult to grow in the laboratory, so routine cultures are not helpful. The clinical symptoms of the disease and the immunogenic responses are currently being used in diagnosing Lyme disease.
What should you do if you feel that you have been misdiagnosed or if you feel that you are not getting appropriate help?
Consult with your physician.
You may need to see a specialist who may be more familiar with Lyme disease such as a doctor specializing in rheumatology, infectious diseases, or dermatology. In addition, depending on the symptoms, some people may also need to be seen by a specialist in neurology or cardiology.
Note: Treatment is an ever changing skill based on clinical experiences, development of new antibiotics, alterations of dosage and length of treatment, and so forth Today's ideal treatment may be totally altered in light of tomorrow's discoveries
Is Lyme disease treatable?
Yes, it can be treated at anytime with antibiotics. The earlier the treatment begins, the more effective it is in preventing the progression of the disease into later complications. Even late stages of Lyme disease have an excellent prognosis. The best treatment is still debatable among various doctors. For early treatment, three weeks of oral antibiotics (amoxicillin or doxycycline) is often recommended. For late disease, the recommended treatment is high doses of intravenous antibiotic for 21 days. For pregnant and lactating women, and for children who are under the age of eight, amoxicillin, IV penicillin, or ceftriaxone is currently recommended. Tetracycline and doxycycline should be avoided in these patients.
When is treatment started?
Most physicians begin treatment as soon as the diagnosis of Lyme disease is made. Some physicians will wait until the condition is confirmed by appropriate laboratory tests. If you live in an endemic area and have been bitten by a deer tick, your physician might choose to put you on antibiotic treatment immediately, even if you have no symptoms. However, current scientific data does not support the use of antibiotics for asymptomatic tick bites. It is recommended at this time that a person wait and see if he or she develops a rash, flu-like illness or other symptoms in the weeks following the tick bite. Research studies have not determined the final answer on this issue.
After treatment. can a person still have a positive titer on their blood test?
Yes, even though a patient has been treated and cured, it takes a long time for the antibody blood level to decrease; a positive titer can persist for months or years. A positive titer following treatment does not indicate that the person is still infected, or that treatment has failed.
Could there be a recurrence of symptoms?
Some patients experience recurrence of symptoms weeks or months following treatment. The best treatment for this situation is not known. Prolonged antibiotic usage has not yet been proven to be effective or warranted. Symptomatic treatment of muscle aches and fatigue with muscle relaxants and with some antidepressant medications has been tried. It is not known if these symptoms reflect a new tick bite, a different illness, or a recurrence of the original infection. More research is needed.
Note: Be aware that recurrence of symptoms may reflect the development of a new illness, not Lyme disease. The patient is urged to see a physician for proper evaluation.
Some physicians are treating patients who experience recurrence of symptoms with long term oral or IV antibiotics. This controversial treatment approach has not yet been supported by research studies.
Is Lyme disease curable?
Yes. The vast majority of patients will be completely cured if treatment is started during the rash or "flu-like" stages. In some patients with arthritic or neurologic symptoms, complete cures have been documented following oral or intravenous antibiotic therapy. In other patients, recurrent or persistent symptoms may remain. It is unclear whether these symptoms are due to active infection and if additional antibiotics will help.
Once having Lyme disease, will the body build an immunity to it?
The body does not always build a significant protective immunity to the Lyme bacteria. Whether a patient can get a new case of Lyme disease after having Lyme remains a controversy. More research is needed to determine if the body builds an effective immunity to the organism. If bitten by an infected tick again, a person could become ill again.
How can I protect myself from Lyme disease?
If you are planning to hike in the woods, or to work or play in your yard (especially if you reside in an endemic area), follow these precautions to protect yourself from ticks:
Tuck your shirt into your pants and the pants into your socks, shoes, or boots.
Wear a hat or pull back long hair.
When walking in the woods or grassy fields, try to stay near the center of trails.
Apply tick repellents with DEET (N,N-diethylmetatoluamide) to your clothing, shoes and socks before starting out. Be careful about spraying the repellent on your bare skin and using sprays excessively.
Remember they are chemicals. Read labels and apply the repellents as directed. The New York State Department of Health recommends that you not use sprays that have more than a 30% concentration of DEET. A 10% - 30% concentration is deemed effective. Other states may have different recommendations or regulations concerning use of these chemicals.
Check yourself occasionally for ticks. On returning from a trip or each night, check yourself, children, and pets for ticks. Check hair, body folds, ears, underarms, back, behind knees, etc.
Shower and shampoo.
Check clothes and wash them immediately in order to remove ticks that may be hidden in creases.
Educate yourself and family about Lyme disease.
Watch out for early signs and symptoms.
Keep lawns mowed and brush trimmed as short as possible.
Is there a vaccine for preventing Lyme disease in humans?
Does Lyme disease have stages?
No. It was originally thought that this disease did follow clearcut stages, and the older writings reflect this. However, it is now recognized that there is no single symptom that occurs, nor is there a predictable time frame or sequence of symptoms.
Can Lyme disease affect the unborn?
Yes, but the risk appears very low. Doctors need more long term, controlled studies to determine ways that Lyme disease can effect the fetus or newborn. Pregnant mothers should contact their obstetrician for further information.
Can Lyme disease be transmitted by blood transfusion?
There have not been any documented cases of Lyme disease being contracted by receiving or giving blood .
Can I donate blood after having Lyme disease?
The answer is generally yes. Some blood banks may require a waiting period after active symptoms of Lyme disease or following antibiotic treatment. Check with your local Blood Bank for its specific criteria.
Can Lyme disease be transmitted sexually?
There have been no known cases of sexual transmission.
What is the goal of a Lyme disease support group?
The goal is to provide an educational, safe, and supportive environment for Lyme disease patients and for their families. In such an environment, it is easier for patients to share their feelings and experiences with each other. Also, a variety of educational materials and lectures are provided during the meetings. Finally, as there is "strength in numbers", support groups can have greater influence on legislation. Money needs to be allocated for research, disability claims need to be given acceptability, and community tick-eradication methods need to be discussed.
Why may I need a support group for Lyme disease?
Lyme disease is a newly recognized disease that can be physically emotionally, and mentally debilitating. Physicians and the public are trying to learn more about the disease, because it seems to be more complex, harder to cure, and more difficult to control than was first thought. Now, more attention is being paid to this illness. There are still "gray areas" of knowledge in diagnosing, treating and preventing this disease. This may cause frustration and a feeling of helplessness for the patients suffering with Lyme disease and their families. Support groups can provide a unique depth of exchange and support to help a patient alleviate some of his fear and helplessness. On the public level, a support group can provide mutual aid, education, and direct service information. On the personal level, comparisons can be made by drawing upon others' experiences with the disease and then use them as references on how to cope with and handle one's own illness. This type of helping relationship may be hard to find in a friendship or professional relationship, but is easily obtained in a support group made up of others with similar symptoms and understanding.
Are there other tick-borne diseases?
Rocky Mountain Spotted Fever (RMSF) is caused by a rickettsia (a life form which is an intermediate between a virus and a bacterium). It is spread by a wood tick or dog tick (much larger than a deer tick). Initial symptoms may be a severe headache, chills, muscular pain, spreading rash. Later symptoms may be more neurological (headaches, insomnia, delirium, coma). This disease mainly occurs in the Western States during May to September.
Babesiosis is an infectious disease caused by a malaria-like parasite. The parasite is called Babesia microti. It exists in mammal hosts, like rodents. Like Lyme disease, the infection is transmitted by deer ticks (Ixodes scapularis). Symptoms begin several weeks after the bite and are characterized by muscle aches, fatigue and fever. Although Babesiosis and Lyme disease are two completely different illnesses, the Ixodes dammini could transmit both Lyme disease and Babesiosis, depending on whether the tick carried the spirochete of Lyme or the parasite of Babesiosis.
Human granulocytic Erlichiosis (HGE) is caused by an intracellular, gram negative organism. It can be transmitted by either Ixodes scapularis or Amblyomma american. Patients usually develop headache, shaking, chills and fatigue.
Do other insects carry the spirochete which causes Lyme disease?
Recent studies show that other insects (i.e., other types of ticks, fleas, mosquitoes) may carry the spirochete that causes Lyme disease, BUT it is not documented whether these insects can transmit the disease to animals or humans. It is also not known if other insects are infected in large numbers. More studies are needed to determine these factors.
Is there a genetic factor involved in Lyme disease?
There is some research data which suggests that patients who carry the HLA DR4 gene and have Lyme arthritis may be cured of the infection by antibiotic treatment, although their arthritis may not completely respond to the treatment, and may become chronic. The optimal treatment of this type of arthritis is not yet established. More research is needed.
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