Lyme and other tick borne diseases
................................a tiny tick can cause a big health problem!
Lyme Disease and Tick bites
If you DO find a tick attached to your skin, there is no need to panic. Not all ticks are infected, and studies of infected deer ticks have shown that they begin transmitting Lyme disease an average of 36 to 48 hours after attachment. Therefore, your chances of contracting LD are greatly reduced if you remove a tick within the first 24 hours. Remember, too, that the majority of early Lyme disease cases are easily treated and cured.
To remove a tick, follow these steps:
Lyme disease is an infection caused by the bacterium Borrelia burgdorferi.
The bacterium, a type of spirochete, is spread by Ixodes ticks (black-legged or deer ticks in the eastern United States and western black-legged ticks in the west), which acquire the bacteria from mice and infect humans by biting and regurgitating the bacteria into their bloodstream. These ticks are smaller than dog ticks and harder to detect.
Immature ticks, or nymphs, are about the size of a poppy seed; adult ticks are the size of a sesame seed.
The majority of reported Lyme disease cases occur in the northeastern and upper mid western areas of the United States because these two zones and the Pacific Northwest are the natural habitat of the Ixodes tick and its carriers. Some cases of Lyme disease have also been reported in the southeastern and southern mid western states, although the Centers for Disease Control (CDC) considers these low-risk areas. According to CDC, the states that report the most cases of Lyme disease are: Connecticut, Delaware, Maryland, Massachusetts, Minnesota, New York, New Jersey, Pennsylvania, Rhode Island and Wisconsin. Some cases of Lyme disease have also been reported in Asia, northern and southern Europe, and parts of Canada. Lyme disease is the leading tick-borne disease in the United States, with more than 16,000 cases reported to the CDC in 1999, but it is not the only disease carried by ticks. Two other diseases, human granulocytic ehrlichiosis (HGE) and babesiosis, are also transmitted through deer tick bites. There has been a rise in the number of reported cases of HGE. Many cases of HGE have occurred in the upper midwestern region and coastal northeastern region of the United States.
HGE produces severe flu-like symptoms such as headache, fever, nausea, and overall achiness. HGE can be successfully treated with antibiotics.
Babesiosis is a parasitic disease also transmitted by tick bites. Symptoms include weakness, fatigue, fever, drenching sweats, muscle soreness, and headaches. Treatment includes quinine (a drug used for malaria) and antibiotics.
Signs and Symptoms of Lyme Disease:
Lyme disease is an infection that causes an inflammatory disease affecting the skin, joints, nervous system, and other organ systems.
Symptoms usually appear within a week of infection but may develop up to 30 days after the tick bite. In some cases, there are no symptoms at all.
The symptoms of early Lyme disease, called early localized stage, may include a red-ringed bull's-eye rash (known as erythema migrans), which appears either as a solid red expanding rash or blotch, or as a central red spot surrounded by clear skin that is ringed by an expanding red rash. This rash, which develops in most patients with Lyme disease, usually appears 1 to 2 weeks after the disease is transmitted and may persist for 3 to 5 weeks. It may be warm to the touch and is usually not painful or itchy. The bull's-eye rash may be more difficult to see on darker-skinned people. A dark, bruise-like appearance is more common in those cases. Other symptoms of early localized stage include: swelling of lymph glands near the tick bite fatigue headache achiness joint pain chills
The next stage of Lyme disease, called early disseminated stage, usually appears 2 weeks to 3 months after the tick bite, and may include: two or more areas of rash not at the site of the bite severe headache severe fatigue enlarged lymph nodes (glands) stiffness, especially in the joints and neck sensitivity to light facial paralysis (Bell's palsy) tingling or numbness in the extremities irregular heart rhythm fever of 100 to 102 degrees Fahrenheit ( 37.78 to 38.89 degrees Celsius) meningitis
The last stage of Lyme disease, late stage, may occur if early disease was not detected or appropriately treated. Symptoms of late stage can appear any time from weeks to years after an infectious tick bite and include: arthritis, especially in the knees cognitive deterioration, seen mainly in adults
Contagiousness:
Lyme disease is not transmitted from person to person. The risk of developing Lyme disease depends on an individual's exposure to ticks. The Ixodes tick is present only in the northeastern, upper mid western, and Pacific Northwest regions of the United States, and parts of northern and southern Europe. Children and adults who spend a lot of time outdoors are more likely to contract Lyme disease. Exposure to wooded areas increases risk. Very rarely, Lyme disease contracted during pregnancy may infect the fetus. Domestic animals, such as dogs and cats, may become infected with Lyme disease bacteria and may carry infected ticks into areas where humans live
Findings from routine lab testing:
Treatment: Click on below link for a very detailed account of current guidelines.
Guidelines from the Infectious Diseases Society of America
It's All in the Timing for Lyme Disease Test
By Laura Johannes : WSJ Article : August 17, 2009
You got bitten by a deer tick—now what?
A Lyme disease blood test is used to look for evidence of infection with bacteria that cause the disease, according to laboratories that offer the test. Physicians say the test has poor accuracy until at least three weeks after the bite, but can be used if a patient has late-stage symptoms.
According to the Centers for Disease Control and Prevention, 27,444 cases of Lyme disease were reported in 2007. The disease is caused by the Borrelia burgdorferi bacterium and is often treated with antibiotics. It is spread by black-legged ticks, also known as deer ticks, and is most common in Connecticut, Massachusetts, Maryland, Minnesota, New Hampshire, New Jersey, Delaware, Pennsylvania, New York and Wisconsin, according to the CDC.
The most common test involves two tests from the same sample. It typically costs about $25 to $70 and is often covered by insurance. Based on CDC guidelines, the blood is usually analyzed first with an antibody test called ELISA. If it is positive or unclear, then a confirmatory test called the Western blot is done.
Allen C. Steere, a Harvard University scientist who led the team that discovered Lyme disease in 1975, says the two-tier test is "quite accurate" as long as you use it properly—which means for the most part, not too soon after the suspected infection. In a study published last year, Dr. Steere and his colleagues found that of 76 patients exhibiting a bulls-eye-shaped rash characteristic of early Lyme disease, only a third tested positive for the disease. The bulls-eye rash typically appears within a week or two of infection, according to the CDC. But three to four weeks later, two-thirds of the group tested positive.
Given the tests' low sensitivity in the early stages of Lyme disease, physicians recommend treating with antibiotics when the patient develops the rash or other clear symptoms.
Still, individuals bitten by a tick in an area where Lyme disease is prevalent often think they should be tested immediately. Many people go to their doctors and say "I got bit by a tick. Test me!" says Wisconsin researcher Edward A. Belongia, director of the Epidemiology Research Center at the Marshfield Clinic Research Foundation. Dr. Belongia is author of a 2004 study that found only 20% of 356 Lyme tests the scientists reviewed were clearly appropriate, based on the patients' symptoms. Doctors say it is also wrong to get a test after being treated for the disease, since the antibodies can linger for years in your blood.
Critics of the test, such as Raphael B. Stricker, a past president of International Lyme and Associated Diseases Society, a Bethesda, Md., group of doctors specializing in treating chronic Lyme disease, say the tests miss many patients with late-stage Lyme disease. These patients can often test negative, Dr. Stricker says.
Dr. Steere says that in his experience, the test is very effective in patients with late-stage manifestations of the disease, such as arthritis or nerve damage. He does his testing in a research lab at Massachusetts General Hospital. Accuracy may vary from laboratory to laboratory, Dr. Steere adds.
Some labs specializing in Lyme disease test for additional proteins they say are a sign of infection, and as a result some doctors believe they are more accurate. But Dr. Steere says the tests haven't been proven scientifically. The CDC Web site warns consumers to beware of labs offering nonstandard Lyme disease tests. The CDC encourages patients to "ask their physicians whether their testing was performed using validated methods."
You can get the tick tested, but doctors say that generally isn't necessary. Even if the tick has Lyme bacteria, the disease won't be transmitted to you unless the tick fed on you for 24 to 72 hours.
A Threat in a Grassy Stroll: Lyme Disease
By Jane E. Brody : NY Times : July 15, 2008
My friend Anne and her husband, Richard, spend summers at a resort in Westchester County that has a swimming lake, tennis courts, gardens and beautiful grounds surrounded by woods. But Anne never sets foot on the grass.
The reason is Lyme disease. Anne says just about everyone she knows who partakes of the greenery and gardens outside the cabins has contracted the disease. So not only is she cautious about venturing out, but she and her husband also check each other daily from head to toe for the much-feared deer tick, which can transmit the disease when it attaches to skin and feeds on blood.
This tick, which is the size of a pinhead when it starts searching for a bloody meal, is responsible for about 20,000 reported cases of Lyme disease each year in the United States (the actual number is believed to be 10 times that) and 60,000 reported cases in Europe. Cases have been reported in every state, with residents of the Northeast, the Great Lakes region, northwestern Washington and parts of California the most frequent victims.
In some areas, as many as half of the deer ticks are infected with Borrelia, the Lyme disease bacteria. The disease got its name in 1975 from the first identified cluster of cases, among children in Lyme, Conn., who had rheumatoid-like symptoms of swollen, painful joints.
The white-tailed deer and white-footed mouse are the tick’s most frequent hosts, but it also feeds on birds, dogs and other rodents, including squirrels. The tiny nymphal form that emerges in spring and early summer presents the greatest hazard to humans. It is also the hardest to spot, especially on body parts covered with hair.
People usually acquire the tick while walking through grassy or wooded areas. Sometimes pet dogs are the source: in Minnesota one summer, our dog got more than 30 deer ticks on his face, apparently from sticking his nose into a fresh carcass. Unlike the common dog tick, which is round and very dark, the deer tick is elongated and brownish.
A Challenging Diagnosis
The disease can be maddeningly difficult to diagnose. Only 50 to 70 percent of patients recall being bitten by a tick. Ordinary laboratory tests are rarely helpful. Tests for antibodies to the bacterium or for its genetic footprints result in many false-negative and false-positive findings.
Rather, according to Dr. Robert L. Bratton and colleagues at the Mayo Clinic in Scottsdale, Ariz., who reviewed the recent literature on Lyme disease in the May issue of Mayo Clinic Proceedings, most cases are best diagnosed and treated based on patients’ symptoms. Thus, doctors everywhere must be alert when dealing with patients who live or travel in areas where Lyme disease is prevalent, and they must be willing to use appropriate antibiotics based on a clinical assessment rather than laboratory findings.
Since signs and symptoms vary and often do not appear until one to four weeks — or even months — after exposure, anyone bitten by a deer tick may be wise to obtain preventive treatment with an antibiotic, according to Lyme disease experts consulted by Constance A. Bean, the author with Dr. Lesley Ann Fein of the new book “Beating Lyme” (Amacom Books).
The most common sign is a reddish rash called erythema migrans that often resembles a spreading bull’s-eye, though up to 20 percent of patients never develop it. Common sites of the rash are the thigh, groin, buttock and underarm. It may be accompanied by flulike symptoms: fever, chills, body aches, headache and fatigue.
If untreated or inadequately treated, the infection can cause severe migrating joint pain and swelling, most often in the knees, weeks or months later. In addition, several weeks, months or even years after an untreated infection, the bacterium can cause meningitis, temporary facial paralysis, numbness or weakness of the arms and legs, memory and concentration difficulties and changes in mood, personality or sleep habits. Some untreated patients develop temporary heart rhythm abnormalities, eye inflammation or hepatitis.
Controversial Guidelines
Antibiotics for early Lyme disease should be taken for at least two to three weeks. The treatments recommended by the Infectious Diseases Society of America include doxycycline for nonpregnant patients and children 9 and older, or amoxicillin for pregnant women and younger children. Other options include cefuroxime axetil (Ceftin) and erythromycin.
But these guidelines are controversial. They have been challenged by a nonprofit medical group, the International Lyme and Associated Diseases Society, which says they are inadequate to combat the infection in a significant number of patients, who go on to develop debilitating chronic symptoms.
In May, the Infectious Diseases Society agreed to review its guidelines as a result of an antitrust lawsuit by the Connecticut attorney general, Richard Blumenthal, who said some of the society’s experts had financial interests that could bias their judgment. (The society denied that accusation.)
Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than “official” diagnostic and treatment guidelines suggest.
Pamela Weintraub, a senior editor at Discover magazine, has produced a thoroughly researched and well-written account of the disease’s controversial history in her new book “Cure Unknown: Inside the Lyme Epidemic” (St. Martin’s Press).
Treatment and Prevention
The Mayo doctors concluded that patients who developed arthritis related to Lyme disease should be treated for one to two months and that those with late or severe disease, including neurological and cardiac symptoms, required intravenous antibiotics. Although two studies, neither of which was long-term, found that repeated antibiotic treatment did not reverse the pain and altered cognition associated with Lyme disease, the experience of thousands of patients, including Ms. Bean, contradict these findings.
There are no vaccines to prevent Lyme disease; an early attempt was taken off the market in 2002 because of side effects and limited effectiveness. Those who will not or cannot avoid grassy and wooded areas should wear long sleeves and long pants with legs tucked into socks, and spray exposed skin and clothing with tick repellent containing 20 to 30 percent DEET. Repellents should not be used on children under 2.
Since the tick must usually feed for 24 hours to transmit significant amounts of bacteria, daily body checks and showering with a washcloth can help prevent infection. Clothing should be washed and dried in a dryer. Additional preventive actions are described in “Beating Lyme.”
If a tick is attached to skin, it should be removed with tweezers, not fingers. Press into the skin, grasp the front of the tick’s head and pull at right angles to the skin. Place the tick in a sealed plastic bag for later identification. Then wash the area and your hands thoroughly.
Lyme Disease : Overview
Lyme disease is an inflammatory disease spread through a tick bite.
This article offers a general overview on Lyme disease. For specific information see:
Alternative Names : Borreliosis
Causes
Lyme disease is caused by the bacteria Borrelia burgdorferi (B. burgdorferi). Certain ticks carry the bacteria. The ticks pick up the bacteria when they bite mice or deer that are infected with Lyme disease. You can get the disease if you are bitten by an infected tick.
Lyme disease was first reported in the United States in the town of Old Lyme, Connecticut in 1975. Cases have now been reported in most parts of the United States. Most occur in the Northeast, upper Midwest, and along the Pacific coast. Lyme disease is usually seen during the late spring, summer, and early fall.
There are three stages of Lyme disease.
include walking in high grasses, taking place in activities that increase tick exposure, and having a pet that may carry ticks home.
Symptoms »
Not everyone infected with the bacteria gets ill. If a person does become ill, the first symptoms resemble the flu and include fever, headache, chills, muscle pain, and lethargy.
There may be a "bulls-eye" rash, a flat or slightly raised red spot at the site of the tick bite often with a clear area in the center. This lesion can be larger than 1 to 3 inches wide.
Stiff neck, joint inflammation, body-wide itching, unusual or strange behavior, and other symptoms may be seen in persons with later stages of the disease.
Note: Deer ticks can be so small that they are almost impossible to see. Therefore, many people with Lyme disease never even saw a tick. These people are more likely to develop symptoms because the tick remained on their body longer.
In-Depth Symptoms »
Exams and Tests »
A blood test can be done to check for antibodies to the bacteria that causes Lyme disease. The most common one used is the ELISA for Lyme disease test. A western blot test is done to confirm ELISA results.
A physical exam may reveal signs of joint, heart, or brain problems in persons with advanced Lyme disease.
In-Depth Diagnosis »
Treatment »
Antibiotics are used to treat Lyme disease. The specific antibiotic used depends on the stage of the disease and your symptoms.
Anti-inflammatory medications, such as ibuprofen, are sometimes prescribed to relieve joint stiffness.
In-Depth Treatment »
Outlook (Prognosis)
If diagnosed in the early stages, Lyme disease can be cured with antibiotics. Without treatment, complications involving joints, the heart, and the nervous system can occur.
Possible Complications
Advanced stages of Lyme disease can cause long-term joint inflammation (Lyme arthritis) and heart rhythm problems. Neurological problems are also possible, and may include:
When to Contact a Medical Professional
Call your health care provider if symptoms of Lyme disease develop.
Prevention »
When walking or hiking in wooded or grassy areas, tuck long pants into socks to protect the legs, and wear shoes and light-colored, long-sleeved shirts. Ticks show up better on white or light colored-clothing than dark items. Spray your clothes with insect repellant.
Check yourself and your pets frequently. If you find ticks, remove them immediately by using tweezers, pulling carefully and steadily.
Ticks that carry Lyme disease are usually so small that they are almost impossible to see. After returning home, remove your clothes and thoroughly inspect all skin surface areas, including your scalp.
Lyme Disease and Tick bites
If you DO find a tick attached to your skin, there is no need to panic. Not all ticks are infected, and studies of infected deer ticks have shown that they begin transmitting Lyme disease an average of 36 to 48 hours after attachment. Therefore, your chances of contracting LD are greatly reduced if you remove a tick within the first 24 hours. Remember, too, that the majority of early Lyme disease cases are easily treated and cured.
To remove a tick, follow these steps:
- Using a pair of fine pointed tweezers, grasp the tick by the head or mouthparts right where they enter the skin.
- DO NOT grasp the tick by the body.
- Without jerking, pull firmly and steadily directly outward.
- DO NOT twist the tick out or apply petroleum jelly, a hot match, alcohol or any other irritant to the tick in an attempt to get it to back out. These methods can backfire and even increase the chances of the tick transmitting the disease.
Lyme disease is an infection caused by the bacterium Borrelia burgdorferi.
The bacterium, a type of spirochete, is spread by Ixodes ticks (black-legged or deer ticks in the eastern United States and western black-legged ticks in the west), which acquire the bacteria from mice and infect humans by biting and regurgitating the bacteria into their bloodstream. These ticks are smaller than dog ticks and harder to detect.
Immature ticks, or nymphs, are about the size of a poppy seed; adult ticks are the size of a sesame seed.
The majority of reported Lyme disease cases occur in the northeastern and upper mid western areas of the United States because these two zones and the Pacific Northwest are the natural habitat of the Ixodes tick and its carriers. Some cases of Lyme disease have also been reported in the southeastern and southern mid western states, although the Centers for Disease Control (CDC) considers these low-risk areas. According to CDC, the states that report the most cases of Lyme disease are: Connecticut, Delaware, Maryland, Massachusetts, Minnesota, New York, New Jersey, Pennsylvania, Rhode Island and Wisconsin. Some cases of Lyme disease have also been reported in Asia, northern and southern Europe, and parts of Canada. Lyme disease is the leading tick-borne disease in the United States, with more than 16,000 cases reported to the CDC in 1999, but it is not the only disease carried by ticks. Two other diseases, human granulocytic ehrlichiosis (HGE) and babesiosis, are also transmitted through deer tick bites. There has been a rise in the number of reported cases of HGE. Many cases of HGE have occurred in the upper midwestern region and coastal northeastern region of the United States.
HGE produces severe flu-like symptoms such as headache, fever, nausea, and overall achiness. HGE can be successfully treated with antibiotics.
Babesiosis is a parasitic disease also transmitted by tick bites. Symptoms include weakness, fatigue, fever, drenching sweats, muscle soreness, and headaches. Treatment includes quinine (a drug used for malaria) and antibiotics.
Signs and Symptoms of Lyme Disease:
Lyme disease is an infection that causes an inflammatory disease affecting the skin, joints, nervous system, and other organ systems.
Symptoms usually appear within a week of infection but may develop up to 30 days after the tick bite. In some cases, there are no symptoms at all.
The symptoms of early Lyme disease, called early localized stage, may include a red-ringed bull's-eye rash (known as erythema migrans), which appears either as a solid red expanding rash or blotch, or as a central red spot surrounded by clear skin that is ringed by an expanding red rash. This rash, which develops in most patients with Lyme disease, usually appears 1 to 2 weeks after the disease is transmitted and may persist for 3 to 5 weeks. It may be warm to the touch and is usually not painful or itchy. The bull's-eye rash may be more difficult to see on darker-skinned people. A dark, bruise-like appearance is more common in those cases. Other symptoms of early localized stage include: swelling of lymph glands near the tick bite fatigue headache achiness joint pain chills
The next stage of Lyme disease, called early disseminated stage, usually appears 2 weeks to 3 months after the tick bite, and may include: two or more areas of rash not at the site of the bite severe headache severe fatigue enlarged lymph nodes (glands) stiffness, especially in the joints and neck sensitivity to light facial paralysis (Bell's palsy) tingling or numbness in the extremities irregular heart rhythm fever of 100 to 102 degrees Fahrenheit ( 37.78 to 38.89 degrees Celsius) meningitis
The last stage of Lyme disease, late stage, may occur if early disease was not detected or appropriately treated. Symptoms of late stage can appear any time from weeks to years after an infectious tick bite and include: arthritis, especially in the knees cognitive deterioration, seen mainly in adults
Contagiousness:
Lyme disease is not transmitted from person to person. The risk of developing Lyme disease depends on an individual's exposure to ticks. The Ixodes tick is present only in the northeastern, upper mid western, and Pacific Northwest regions of the United States, and parts of northern and southern Europe. Children and adults who spend a lot of time outdoors are more likely to contract Lyme disease. Exposure to wooded areas increases risk. Very rarely, Lyme disease contracted during pregnancy may infect the fetus. Domestic animals, such as dogs and cats, may become infected with Lyme disease bacteria and may carry infected ticks into areas where humans live
Findings from routine lab testing:
- elevated sedimentation rate
- mildly elevated liver transaminase enzyme levels
- for cases of Lyme meingitis, the cerebrospinal fluid has an increased lymphocye count and elevated protein level
- positive confirmatory Western blot test if the screening test is positive or equivocal
- isolation of the B. burgdorferi from a clinical specimen
Treatment: Click on below link for a very detailed account of current guidelines.
Guidelines from the Infectious Diseases Society of America
It's All in the Timing for Lyme Disease Test
By Laura Johannes : WSJ Article : August 17, 2009
You got bitten by a deer tick—now what?
A Lyme disease blood test is used to look for evidence of infection with bacteria that cause the disease, according to laboratories that offer the test. Physicians say the test has poor accuracy until at least three weeks after the bite, but can be used if a patient has late-stage symptoms.
According to the Centers for Disease Control and Prevention, 27,444 cases of Lyme disease were reported in 2007. The disease is caused by the Borrelia burgdorferi bacterium and is often treated with antibiotics. It is spread by black-legged ticks, also known as deer ticks, and is most common in Connecticut, Massachusetts, Maryland, Minnesota, New Hampshire, New Jersey, Delaware, Pennsylvania, New York and Wisconsin, according to the CDC.
The most common test involves two tests from the same sample. It typically costs about $25 to $70 and is often covered by insurance. Based on CDC guidelines, the blood is usually analyzed first with an antibody test called ELISA. If it is positive or unclear, then a confirmatory test called the Western blot is done.
Allen C. Steere, a Harvard University scientist who led the team that discovered Lyme disease in 1975, says the two-tier test is "quite accurate" as long as you use it properly—which means for the most part, not too soon after the suspected infection. In a study published last year, Dr. Steere and his colleagues found that of 76 patients exhibiting a bulls-eye-shaped rash characteristic of early Lyme disease, only a third tested positive for the disease. The bulls-eye rash typically appears within a week or two of infection, according to the CDC. But three to four weeks later, two-thirds of the group tested positive.
Given the tests' low sensitivity in the early stages of Lyme disease, physicians recommend treating with antibiotics when the patient develops the rash or other clear symptoms.
Still, individuals bitten by a tick in an area where Lyme disease is prevalent often think they should be tested immediately. Many people go to their doctors and say "I got bit by a tick. Test me!" says Wisconsin researcher Edward A. Belongia, director of the Epidemiology Research Center at the Marshfield Clinic Research Foundation. Dr. Belongia is author of a 2004 study that found only 20% of 356 Lyme tests the scientists reviewed were clearly appropriate, based on the patients' symptoms. Doctors say it is also wrong to get a test after being treated for the disease, since the antibodies can linger for years in your blood.
Critics of the test, such as Raphael B. Stricker, a past president of International Lyme and Associated Diseases Society, a Bethesda, Md., group of doctors specializing in treating chronic Lyme disease, say the tests miss many patients with late-stage Lyme disease. These patients can often test negative, Dr. Stricker says.
Dr. Steere says that in his experience, the test is very effective in patients with late-stage manifestations of the disease, such as arthritis or nerve damage. He does his testing in a research lab at Massachusetts General Hospital. Accuracy may vary from laboratory to laboratory, Dr. Steere adds.
Some labs specializing in Lyme disease test for additional proteins they say are a sign of infection, and as a result some doctors believe they are more accurate. But Dr. Steere says the tests haven't been proven scientifically. The CDC Web site warns consumers to beware of labs offering nonstandard Lyme disease tests. The CDC encourages patients to "ask their physicians whether their testing was performed using validated methods."
You can get the tick tested, but doctors say that generally isn't necessary. Even if the tick has Lyme bacteria, the disease won't be transmitted to you unless the tick fed on you for 24 to 72 hours.
A Threat in a Grassy Stroll: Lyme Disease
By Jane E. Brody : NY Times : July 15, 2008
My friend Anne and her husband, Richard, spend summers at a resort in Westchester County that has a swimming lake, tennis courts, gardens and beautiful grounds surrounded by woods. But Anne never sets foot on the grass.
The reason is Lyme disease. Anne says just about everyone she knows who partakes of the greenery and gardens outside the cabins has contracted the disease. So not only is she cautious about venturing out, but she and her husband also check each other daily from head to toe for the much-feared deer tick, which can transmit the disease when it attaches to skin and feeds on blood.
This tick, which is the size of a pinhead when it starts searching for a bloody meal, is responsible for about 20,000 reported cases of Lyme disease each year in the United States (the actual number is believed to be 10 times that) and 60,000 reported cases in Europe. Cases have been reported in every state, with residents of the Northeast, the Great Lakes region, northwestern Washington and parts of California the most frequent victims.
In some areas, as many as half of the deer ticks are infected with Borrelia, the Lyme disease bacteria. The disease got its name in 1975 from the first identified cluster of cases, among children in Lyme, Conn., who had rheumatoid-like symptoms of swollen, painful joints.
The white-tailed deer and white-footed mouse are the tick’s most frequent hosts, but it also feeds on birds, dogs and other rodents, including squirrels. The tiny nymphal form that emerges in spring and early summer presents the greatest hazard to humans. It is also the hardest to spot, especially on body parts covered with hair.
People usually acquire the tick while walking through grassy or wooded areas. Sometimes pet dogs are the source: in Minnesota one summer, our dog got more than 30 deer ticks on his face, apparently from sticking his nose into a fresh carcass. Unlike the common dog tick, which is round and very dark, the deer tick is elongated and brownish.
A Challenging Diagnosis
The disease can be maddeningly difficult to diagnose. Only 50 to 70 percent of patients recall being bitten by a tick. Ordinary laboratory tests are rarely helpful. Tests for antibodies to the bacterium or for its genetic footprints result in many false-negative and false-positive findings.
Rather, according to Dr. Robert L. Bratton and colleagues at the Mayo Clinic in Scottsdale, Ariz., who reviewed the recent literature on Lyme disease in the May issue of Mayo Clinic Proceedings, most cases are best diagnosed and treated based on patients’ symptoms. Thus, doctors everywhere must be alert when dealing with patients who live or travel in areas where Lyme disease is prevalent, and they must be willing to use appropriate antibiotics based on a clinical assessment rather than laboratory findings.
Since signs and symptoms vary and often do not appear until one to four weeks — or even months — after exposure, anyone bitten by a deer tick may be wise to obtain preventive treatment with an antibiotic, according to Lyme disease experts consulted by Constance A. Bean, the author with Dr. Lesley Ann Fein of the new book “Beating Lyme” (Amacom Books).
The most common sign is a reddish rash called erythema migrans that often resembles a spreading bull’s-eye, though up to 20 percent of patients never develop it. Common sites of the rash are the thigh, groin, buttock and underarm. It may be accompanied by flulike symptoms: fever, chills, body aches, headache and fatigue.
If untreated or inadequately treated, the infection can cause severe migrating joint pain and swelling, most often in the knees, weeks or months later. In addition, several weeks, months or even years after an untreated infection, the bacterium can cause meningitis, temporary facial paralysis, numbness or weakness of the arms and legs, memory and concentration difficulties and changes in mood, personality or sleep habits. Some untreated patients develop temporary heart rhythm abnormalities, eye inflammation or hepatitis.
Controversial Guidelines
Antibiotics for early Lyme disease should be taken for at least two to three weeks. The treatments recommended by the Infectious Diseases Society of America include doxycycline for nonpregnant patients and children 9 and older, or amoxicillin for pregnant women and younger children. Other options include cefuroxime axetil (Ceftin) and erythromycin.
But these guidelines are controversial. They have been challenged by a nonprofit medical group, the International Lyme and Associated Diseases Society, which says they are inadequate to combat the infection in a significant number of patients, who go on to develop debilitating chronic symptoms.
In May, the Infectious Diseases Society agreed to review its guidelines as a result of an antitrust lawsuit by the Connecticut attorney general, Richard Blumenthal, who said some of the society’s experts had financial interests that could bias their judgment. (The society denied that accusation.)
Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than “official” diagnostic and treatment guidelines suggest.
Pamela Weintraub, a senior editor at Discover magazine, has produced a thoroughly researched and well-written account of the disease’s controversial history in her new book “Cure Unknown: Inside the Lyme Epidemic” (St. Martin’s Press).
Treatment and Prevention
The Mayo doctors concluded that patients who developed arthritis related to Lyme disease should be treated for one to two months and that those with late or severe disease, including neurological and cardiac symptoms, required intravenous antibiotics. Although two studies, neither of which was long-term, found that repeated antibiotic treatment did not reverse the pain and altered cognition associated with Lyme disease, the experience of thousands of patients, including Ms. Bean, contradict these findings.
There are no vaccines to prevent Lyme disease; an early attempt was taken off the market in 2002 because of side effects and limited effectiveness. Those who will not or cannot avoid grassy and wooded areas should wear long sleeves and long pants with legs tucked into socks, and spray exposed skin and clothing with tick repellent containing 20 to 30 percent DEET. Repellents should not be used on children under 2.
Since the tick must usually feed for 24 hours to transmit significant amounts of bacteria, daily body checks and showering with a washcloth can help prevent infection. Clothing should be washed and dried in a dryer. Additional preventive actions are described in “Beating Lyme.”
If a tick is attached to skin, it should be removed with tweezers, not fingers. Press into the skin, grasp the front of the tick’s head and pull at right angles to the skin. Place the tick in a sealed plastic bag for later identification. Then wash the area and your hands thoroughly.
Lyme Disease : Overview
Lyme disease is an inflammatory disease spread through a tick bite.
This article offers a general overview on Lyme disease. For specific information see:
Alternative Names : Borreliosis
Causes
Lyme disease is caused by the bacteria Borrelia burgdorferi (B. burgdorferi). Certain ticks carry the bacteria. The ticks pick up the bacteria when they bite mice or deer that are infected with Lyme disease. You can get the disease if you are bitten by an infected tick.
Lyme disease was first reported in the United States in the town of Old Lyme, Connecticut in 1975. Cases have now been reported in most parts of the United States. Most occur in the Northeast, upper Midwest, and along the Pacific coast. Lyme disease is usually seen during the late spring, summer, and early fall.
There are three stages of Lyme disease.
- Stage 1 is called primary Lyme disease.
- Stage 2 is called secondary Lyme disease.
- Stage 3 is called tertiary Lyme disease.
include walking in high grasses, taking place in activities that increase tick exposure, and having a pet that may carry ticks home.
Symptoms »
Not everyone infected with the bacteria gets ill. If a person does become ill, the first symptoms resemble the flu and include fever, headache, chills, muscle pain, and lethargy.
There may be a "bulls-eye" rash, a flat or slightly raised red spot at the site of the tick bite often with a clear area in the center. This lesion can be larger than 1 to 3 inches wide.
Stiff neck, joint inflammation, body-wide itching, unusual or strange behavior, and other symptoms may be seen in persons with later stages of the disease.
Note: Deer ticks can be so small that they are almost impossible to see. Therefore, many people with Lyme disease never even saw a tick. These people are more likely to develop symptoms because the tick remained on their body longer.
In-Depth Symptoms »
Exams and Tests »
A blood test can be done to check for antibodies to the bacteria that causes Lyme disease. The most common one used is the ELISA for Lyme disease test. A western blot test is done to confirm ELISA results.
A physical exam may reveal signs of joint, heart, or brain problems in persons with advanced Lyme disease.
In-Depth Diagnosis »
Treatment »
Antibiotics are used to treat Lyme disease. The specific antibiotic used depends on the stage of the disease and your symptoms.
Anti-inflammatory medications, such as ibuprofen, are sometimes prescribed to relieve joint stiffness.
In-Depth Treatment »
Outlook (Prognosis)
If diagnosed in the early stages, Lyme disease can be cured with antibiotics. Without treatment, complications involving joints, the heart, and the nervous system can occur.
Possible Complications
Advanced stages of Lyme disease can cause long-term joint inflammation (Lyme arthritis) and heart rhythm problems. Neurological problems are also possible, and may include:
- Decreased concentration
- Memory disorders
- Nerve damage
- Numbness
- Pain
- Paralysis of the facial muscles
- Sleep disorders
- Visual disturbances
When to Contact a Medical Professional
Call your health care provider if symptoms of Lyme disease develop.
Prevention »
When walking or hiking in wooded or grassy areas, tuck long pants into socks to protect the legs, and wear shoes and light-colored, long-sleeved shirts. Ticks show up better on white or light colored-clothing than dark items. Spray your clothes with insect repellant.
Check yourself and your pets frequently. If you find ticks, remove them immediately by using tweezers, pulling carefully and steadily.
Ticks that carry Lyme disease are usually so small that they are almost impossible to see. After returning home, remove your clothes and thoroughly inspect all skin surface areas, including your scalp.
New Infection, Not Relapse, Brings Back Lyme Symptoms, Study Says
By Denise Grady : NY Times : November 14, 2012
When people who have been treated for Lyme disease recover but later come down with its symptoms again, is the illness a relapse or a new infection?
The question has lingered for years. Now, a new study finds that repeat symptoms are from new infections, not from relapses.
The results challenge the notion, strongly held by some patients and advocacy groups, that Lyme disease, a bacterial infection, has a tendency to resist the usual antibiotic treatment and turn into a chronic illness that requires months or even years of antibiotic therapy.
The conclusion that new symptoms come from new infections is based on genetically fingerprinting the Lyme bacteria in people who have had the illness more than once, and finding that the fingerprints do not match. The result means that different episodes of Lyme in each patient were caused by different strains of the bacteria, and could not have been relapses.
The study, by researchers at the University of Pennsylvania and New York Medical College, in Valhalla, was published online in The New England Journal of Medicine.
An estimated 20,000 to 30,000 cases of Lyme disease occur each year in the United States. The disease is caused by a bacterium, Borrelia burgdorferi, that is carried by deer ticks. It often begins with an expanding zone of red skin — a symptom called erythema migrans — around the tick bite, but sometimes in other areas too. Fever, headaches, fatigue and aches and pains often follow.
Untreated, the disease can cause heart and neurological problems and arthritis, with symptoms that can come and go for years. Advanced cases that have gone months or years before being treated are most likely to result in persistent arthritis.
But when the disease is detected earlier, treatment with an antibiotic, usually two to four weeks of doxycycline, can get rid of the bacteria, according to infectious disease experts. Even advanced cases can be cleared by the drugs, doctors say, though an extra month or so of treatment may be needed. Symptoms like pain and fatigue can linger even after the bacteria are gone, possibly because the infection caused abnormalities in the immune system.
However, some doctors, patients and advocacy groups think that the bacteria themselves can somehow hang on despite treatment, even in cases caught early, and cause a chronic infection that requires long-term treatment with antibiotics. In some cases, people with unexplained pain, fatigue and cognitive problems have been told they had chronic Lyme disease even though blood tests found no evidence of the infection.
Several controlled studies have found that long-term antibiotics did not help people who had already been treated for Lyme disease but had such lingering problems.
Despite the data, the belief has hung on that Lyme disease bacteria can cause a chronic infection even after treatment.
The researchers who conducted the new study wanted to test that idea by finding out whether people who had repeated bouts of the disease were actually having relapses. They identified 17 patients who had erythema migrans — the rash — more than once between 1991 and 2011. Most had it twice, at least a year apart, but a few patients had it three times and one had four cases. Many had other symptoms as well, and more than half had signs of widespread systemic infection. All were treated, and recovered fully.
Lyme bacteria were grown from skin or blood samples taken from the patients when they had the rash, and the researchers analyzed a bacterial gene that varies from one strain to another. For each patient, they compared the genes from different cases of the rash. The genotypes did not match, which the researchers said proved that each rash represented a new infection, not a relapse.
In an editorial accompanying the article, Dr. Allen C. Steere, a Harvard professor who was the first to identify Lyme disease, said the new study supported previous research suggesting that new infections, not relapses, were the cause of new symptoms in people who had taken antibiotics to treat earlier cases of the disease.
Dr. Steere acknowledged that symptoms, sometimes disabling ones, do linger for months after treatment in as many as 10 percent of patients. Doctors do not know why. But, Dr. Steere said, “antibiotics are not the answer.”
More Tick-Borne Infections Begin at Home
By Laura Landro : WSJ : August 2, 2010
While most people worry about tick bites after outdoor activities like camping, hiking and golf, the majority of bites happen close to home.
The federal Centers for Disease Control and Prevention and the National Institute of Allergy and Infectious Diseases are investigating an alarming rise in several different types of tick-borne infections including Lyme disease, Rocky Mountain spotted fever and ehrlichiosis. Not only are more diseases being spread by ticks, but more species of ticks are transmitting disease, including some, like brown dog ticks, not previously considered a danger to humans. The blood-sucking parasites are the leading carriers of disease in the U.S. and second only to mosquitoes worldwide.
The CDC is promoting "integrated tick management," which includes the use of landscaping to discourage ticks and recommending people treat yards in affected areas with pesticides. Studies by Kirby Stafford, chief entomologist at the Connecticut Agricultural Experiment Station, show that 82% of ticks on a property are within three yards of the lawn perimeter, particularly along woodlands, stone walls, and ornamental plantings.
Dr. Stafford's recommendations include making a barrier of wood chips made of cedar—a natural tick repellent—between wooded areas or stone walls and lawns heavily used by the family, keeping pets out of woods, and avoiding vegetation that attracts deer. As an alternative to chemical pesticides, Dr. Stafford is also working with the CDC to field-test the effectiveness of new organic repellent products that use such substances as rosemary oil, Alaskan cedar and garlic. Some are already on the market.
Often victims aren't aware they've been bitten. Most ticks are hard-backed and can be the size of a pinhead. They may not be noticed until they have embedded themselves in the skin, growing larger as they gorge themselves on blood. Disease can often be avoided if ticks are removed within 24 hours.
To combat the spread of ticks on animals, the CDC and the U.S. Department of Agriculture have been working with state and local officials to study applying insecticides directly to animals in the wild. For deer ticks, which carry three types of disease including Lyme, studies show that feeding stations armed with pesticide can sharply reduce ticks on deer. When the deer eat corn in the feeders, four paint rollers filled with pesticide brush against their ears, neck, head and shoulders. Bait boxes that apply pesticides to mice have also worked. In Arizona, the CDC has been fighting an outbreak of Rocky Mountain spotted fever spread by brown dog ticks by going door-to-door to place tick collars on dogs.
Behind the rise in ticks and the diseases they carry: More homes are being built near wooded areas and on land once used for farming that has reverted to secondary forests. The deer population around the country has exploded. Infectious disease experts also cite warming temperatures and increasing humidity.
"The more people study ticks, the more new pathogens are discovered," says Joseph Piesman, who oversees tick-borne diseases at the CDC.
While some tick-borne infections cause only mild illness that can be treated with antibiotics, others can require hospitalization and cause serious long-term health issues. There are few vaccines for tick-borne diseases.
Reported cases of Lyme, the most prevalent of tick-borne diseases, have risen sharply over the last decade, with 35,198 cases in 2008 compared with 13,000 cases in 2000. The CDC says because of under-reporting, the actual number of cases may be three times as high. Though still largely a problem in the Northeast and upper Midwest, Lyme is turning up all over the U.S. If not correctly diagnosed and treated, Lyme can cause chronic joint inflammation, neurological symptoms such as facial palsy, impaired memory and heart-rhythm irregularities.
Other tick-borne illnesses, though less widespread, are also on the rise. In 2008, there were 2,563 reported cases of Rocky Mountain spotted fever , compared with 579 in 1999. The fever can be quickly fatal unless treated with a powerful antibiotic. Last May, Wisconsin and Minnesota warned about a new species of the tick-borne bacteria ehrlichia, not previously found in North America, which can cause flu-like illness. The disease is transmitted by lone star ticks, which have spread to more states in recent years and are also linked to a new illness, called STARI, for southern tick-associated rash illness.
Tick-borne diseases often exhibit symptoms that look like something else. Without rapid or reliable tests for some diseases, it can be hard for doctors to suspect and diagnose, says David Davenport, an infectious disease specialist at the Michigan State University Center for Medical Studies. "These are rare diseases most physicians don't know much about, or they learned in medical school that the diseases only occur in certain areas," says Dr. Davenport. "But these patterns are rapidly changing and a whole lot of what we are trying to control is a moving target."
Connie Sargent, a nurse at Bronson Methodist Hospital in Kalamazoo, Mich., was admitted to the hospital as a patient last summer after she spiked a fever of 104, became sick to her stomach, and a red rash spread all over her body. Dr. Davenport diagnosed Rocky Mountain spotted fever.
Ms. Sargent did notice some bites, but wasn't sure if she got them gardening in her yard or while at her lake cottage in Traverse City. She was successfully treated with the antibiotic Doxycycline. It took her several weeks to recover. Now, she uses tick repellent when gardening, dons long sleeves and examines herself when she comes inside.
On Wild Horse Island in Montana's Flathead Lake, soft-backed ticks bite quietly in the night, typically inside cabins in wooded areas, leaving people infected with relapsing fever that can cause repeated illness over years. Scott MacDonald, whose family developed the island and sold part of it to the state as a park, was infected with relapsing fever along with several relatives in a 2002 outbreak. Everyone recovered after treatment, he says.
Tom Schwan, an expert in tick-borne diseases at the National Institute of Allergy and Infectious Diseases' Rocky Mountain Laboratories, who first identified the outbreak on the island, has helped property owners rid cabins of ticks with pesticides and remove rodents' nests that harbor ticks. He is now studying how animals and birds may be spreading the disease in Western states.
Once Rare, Infection by Tick Bites Spreads
By Laurie Tarkan : NY Times : June 20, 2011
A potentially devastating infection caused by tick bites has gained a foothold in the Lower Hudson Valley and in coastal areas of the Northeast, government researchers have found.
The condition, called babesiosis, is a malaria-like illness that results from infection with Babesia microti, a parasite that lives in red blood cells and is carried by deer ticks. Though far less common than Lyme disease, babesiosis can be fatal, particularly in people with compromised immune systems.
Because there is no widely used screening test for babesiosis, its spread poses a particular threat to the blood supply, scientists said. “We are very worried about it and are doing everything in our power to address this,” said Sanjai Kumar, chief of the laboratory of emerging pathogens at the Food and Drug Administration.
According to a recent report by the Centers for Disease Control and Prevention, there were six cases of babesiosis in the Lower Hudson Valley in 2001 and 119 cases in 2008, a 20-fold increase. In areas where Lyme disease is endemic, like coastal Rhode Island, Massachusetts, Connecticut and Long Island, babesiosis also is becoming very common, said Dr. Peter Krause, senior research scientist at the Yale School of Public Health.
In one study of residents of Block Island, R.I., Dr. Krause found babesiosis to be just 25 percent less common than Lyme disease. Babesiosis also is spreading slowly into other regions where it did not exist before, like the Upper Midwest, said Dr. Krause.
Many people who are infected with the parasite have no symptoms at all, while others experience mild to moderate flu-like symptoms that may last for a few days or as long as six months. “But some people get so sick that they wind up hospitalized, put into an intensive care unit, or even dying,” said Dr. Gary Wormser, chief of infectious diseases at Westchester Medical Center in New York.
In states that track the disease, there are an estimated 1,000 reported cases a year, said Dr. Krause, but he and other experts believe this represents a fraction of the people who are infected. In the Block Island study, researchers tested about 70 percent of the islanders and found that about one quarter of adults and half of children who were infected had no symptoms and were therefore not reported. Even people with mild to moderate symptoms may never see a physician. Even if they do, the condition may not be accurately diagnosed.
Experts fear that many undiagnosed patients may be donating blood. Currently, blood banks do not screen for Babesia because the Food and Drug Administration has not licensed a test for this purpose. The only way to screen a patient is by using a questionnaire, which simply asks blood donors if they are infected.
Babesiosis already is the most frequently reported infection transmitted through transfusion in the United States, responsible for at least 12 deaths. In New York City, six transfusion-associated cases of babesiosis were reported in 2009. Infection by this route can be serious: One study found approximately 30 percent of people who were infected by a transfusion died.
Between 1999 and 2007, several infants in Rhode Island developed babesiosis following blood transfusions. The Rhode Island Blood Center has become the first in the country to use an experimental new test to screen blood for the parasite.
Experts urge blood transfusion patients and their doctors to be aware of symptoms of babesiosis, which can occur up to nine weeks after a transfusion.
The symptoms can be vague (there is no tell-tale rash as there may be with Lyme disease) and include fever, sweats, chills, headache, fatigue, and muscle aches and pains. In people who also have Lyme disease, doctors might suspect babesiosis if the symptoms are particularly severe or the antibiotics are not working, said Dr. Krause. A diagnosis can be confirmed through blood testing.
Infants and adults over age 50 are more likely to get moderate to severe symptoms if infected. People at increased risk of complications include patients with compromised immune systems (such as people receiving immunosuppressants), those who’ve had their spleens removed, and those with lymphoma or H.I.V. or who are being treated for cancer.
If not caught and treated early, babesiosis can lead to such complications as kidney, lung or heart failure. The infection can be treated with antimicrobial medications, but people with serious complications are less responsive to the drugs.
Why the parasite is spreading and why it’s spreading more slowly than Lyme disease are not well understood. One theory is that Babesia may be carried primarily in mice, which don’t tend to travel far afield. The bacterium causing Lyme disease, Borrelia burgdorferi, can be carried by birds.
By Laura Landro : WSJ : August 2, 2010
While most people worry about tick bites after outdoor activities like camping, hiking and golf, the majority of bites happen close to home.
The federal Centers for Disease Control and Prevention and the National Institute of Allergy and Infectious Diseases are investigating an alarming rise in several different types of tick-borne infections including Lyme disease, Rocky Mountain spotted fever and ehrlichiosis. Not only are more diseases being spread by ticks, but more species of ticks are transmitting disease, including some, like brown dog ticks, not previously considered a danger to humans. The blood-sucking parasites are the leading carriers of disease in the U.S. and second only to mosquitoes worldwide.
The CDC is promoting "integrated tick management," which includes the use of landscaping to discourage ticks and recommending people treat yards in affected areas with pesticides. Studies by Kirby Stafford, chief entomologist at the Connecticut Agricultural Experiment Station, show that 82% of ticks on a property are within three yards of the lawn perimeter, particularly along woodlands, stone walls, and ornamental plantings.
Dr. Stafford's recommendations include making a barrier of wood chips made of cedar—a natural tick repellent—between wooded areas or stone walls and lawns heavily used by the family, keeping pets out of woods, and avoiding vegetation that attracts deer. As an alternative to chemical pesticides, Dr. Stafford is also working with the CDC to field-test the effectiveness of new organic repellent products that use such substances as rosemary oil, Alaskan cedar and garlic. Some are already on the market.
Often victims aren't aware they've been bitten. Most ticks are hard-backed and can be the size of a pinhead. They may not be noticed until they have embedded themselves in the skin, growing larger as they gorge themselves on blood. Disease can often be avoided if ticks are removed within 24 hours.
To combat the spread of ticks on animals, the CDC and the U.S. Department of Agriculture have been working with state and local officials to study applying insecticides directly to animals in the wild. For deer ticks, which carry three types of disease including Lyme, studies show that feeding stations armed with pesticide can sharply reduce ticks on deer. When the deer eat corn in the feeders, four paint rollers filled with pesticide brush against their ears, neck, head and shoulders. Bait boxes that apply pesticides to mice have also worked. In Arizona, the CDC has been fighting an outbreak of Rocky Mountain spotted fever spread by brown dog ticks by going door-to-door to place tick collars on dogs.
Behind the rise in ticks and the diseases they carry: More homes are being built near wooded areas and on land once used for farming that has reverted to secondary forests. The deer population around the country has exploded. Infectious disease experts also cite warming temperatures and increasing humidity.
"The more people study ticks, the more new pathogens are discovered," says Joseph Piesman, who oversees tick-borne diseases at the CDC.
While some tick-borne infections cause only mild illness that can be treated with antibiotics, others can require hospitalization and cause serious long-term health issues. There are few vaccines for tick-borne diseases.
Reported cases of Lyme, the most prevalent of tick-borne diseases, have risen sharply over the last decade, with 35,198 cases in 2008 compared with 13,000 cases in 2000. The CDC says because of under-reporting, the actual number of cases may be three times as high. Though still largely a problem in the Northeast and upper Midwest, Lyme is turning up all over the U.S. If not correctly diagnosed and treated, Lyme can cause chronic joint inflammation, neurological symptoms such as facial palsy, impaired memory and heart-rhythm irregularities.
Other tick-borne illnesses, though less widespread, are also on the rise. In 2008, there were 2,563 reported cases of Rocky Mountain spotted fever , compared with 579 in 1999. The fever can be quickly fatal unless treated with a powerful antibiotic. Last May, Wisconsin and Minnesota warned about a new species of the tick-borne bacteria ehrlichia, not previously found in North America, which can cause flu-like illness. The disease is transmitted by lone star ticks, which have spread to more states in recent years and are also linked to a new illness, called STARI, for southern tick-associated rash illness.
Tick-borne diseases often exhibit symptoms that look like something else. Without rapid or reliable tests for some diseases, it can be hard for doctors to suspect and diagnose, says David Davenport, an infectious disease specialist at the Michigan State University Center for Medical Studies. "These are rare diseases most physicians don't know much about, or they learned in medical school that the diseases only occur in certain areas," says Dr. Davenport. "But these patterns are rapidly changing and a whole lot of what we are trying to control is a moving target."
Connie Sargent, a nurse at Bronson Methodist Hospital in Kalamazoo, Mich., was admitted to the hospital as a patient last summer after she spiked a fever of 104, became sick to her stomach, and a red rash spread all over her body. Dr. Davenport diagnosed Rocky Mountain spotted fever.
Ms. Sargent did notice some bites, but wasn't sure if she got them gardening in her yard or while at her lake cottage in Traverse City. She was successfully treated with the antibiotic Doxycycline. It took her several weeks to recover. Now, she uses tick repellent when gardening, dons long sleeves and examines herself when she comes inside.
On Wild Horse Island in Montana's Flathead Lake, soft-backed ticks bite quietly in the night, typically inside cabins in wooded areas, leaving people infected with relapsing fever that can cause repeated illness over years. Scott MacDonald, whose family developed the island and sold part of it to the state as a park, was infected with relapsing fever along with several relatives in a 2002 outbreak. Everyone recovered after treatment, he says.
Tom Schwan, an expert in tick-borne diseases at the National Institute of Allergy and Infectious Diseases' Rocky Mountain Laboratories, who first identified the outbreak on the island, has helped property owners rid cabins of ticks with pesticides and remove rodents' nests that harbor ticks. He is now studying how animals and birds may be spreading the disease in Western states.
Once Rare, Infection by Tick Bites Spreads
By Laurie Tarkan : NY Times : June 20, 2011
A potentially devastating infection caused by tick bites has gained a foothold in the Lower Hudson Valley and in coastal areas of the Northeast, government researchers have found.
The condition, called babesiosis, is a malaria-like illness that results from infection with Babesia microti, a parasite that lives in red blood cells and is carried by deer ticks. Though far less common than Lyme disease, babesiosis can be fatal, particularly in people with compromised immune systems.
Because there is no widely used screening test for babesiosis, its spread poses a particular threat to the blood supply, scientists said. “We are very worried about it and are doing everything in our power to address this,” said Sanjai Kumar, chief of the laboratory of emerging pathogens at the Food and Drug Administration.
According to a recent report by the Centers for Disease Control and Prevention, there were six cases of babesiosis in the Lower Hudson Valley in 2001 and 119 cases in 2008, a 20-fold increase. In areas where Lyme disease is endemic, like coastal Rhode Island, Massachusetts, Connecticut and Long Island, babesiosis also is becoming very common, said Dr. Peter Krause, senior research scientist at the Yale School of Public Health.
In one study of residents of Block Island, R.I., Dr. Krause found babesiosis to be just 25 percent less common than Lyme disease. Babesiosis also is spreading slowly into other regions where it did not exist before, like the Upper Midwest, said Dr. Krause.
Many people who are infected with the parasite have no symptoms at all, while others experience mild to moderate flu-like symptoms that may last for a few days or as long as six months. “But some people get so sick that they wind up hospitalized, put into an intensive care unit, or even dying,” said Dr. Gary Wormser, chief of infectious diseases at Westchester Medical Center in New York.
In states that track the disease, there are an estimated 1,000 reported cases a year, said Dr. Krause, but he and other experts believe this represents a fraction of the people who are infected. In the Block Island study, researchers tested about 70 percent of the islanders and found that about one quarter of adults and half of children who were infected had no symptoms and were therefore not reported. Even people with mild to moderate symptoms may never see a physician. Even if they do, the condition may not be accurately diagnosed.
Experts fear that many undiagnosed patients may be donating blood. Currently, blood banks do not screen for Babesia because the Food and Drug Administration has not licensed a test for this purpose. The only way to screen a patient is by using a questionnaire, which simply asks blood donors if they are infected.
Babesiosis already is the most frequently reported infection transmitted through transfusion in the United States, responsible for at least 12 deaths. In New York City, six transfusion-associated cases of babesiosis were reported in 2009. Infection by this route can be serious: One study found approximately 30 percent of people who were infected by a transfusion died.
Between 1999 and 2007, several infants in Rhode Island developed babesiosis following blood transfusions. The Rhode Island Blood Center has become the first in the country to use an experimental new test to screen blood for the parasite.
Experts urge blood transfusion patients and their doctors to be aware of symptoms of babesiosis, which can occur up to nine weeks after a transfusion.
The symptoms can be vague (there is no tell-tale rash as there may be with Lyme disease) and include fever, sweats, chills, headache, fatigue, and muscle aches and pains. In people who also have Lyme disease, doctors might suspect babesiosis if the symptoms are particularly severe or the antibiotics are not working, said Dr. Krause. A diagnosis can be confirmed through blood testing.
Infants and adults over age 50 are more likely to get moderate to severe symptoms if infected. People at increased risk of complications include patients with compromised immune systems (such as people receiving immunosuppressants), those who’ve had their spleens removed, and those with lymphoma or H.I.V. or who are being treated for cancer.
If not caught and treated early, babesiosis can lead to such complications as kidney, lung or heart failure. The infection can be treated with antimicrobial medications, but people with serious complications are less responsive to the drugs.
Why the parasite is spreading and why it’s spreading more slowly than Lyme disease are not well understood. One theory is that Babesia may be carried primarily in mice, which don’t tend to travel far afield. The bacterium causing Lyme disease, Borrelia burgdorferi, can be carried by birds.
This Season's Ticking Bomb
Warm Weather Means Ticks Will Be Out Early; A 'Horrific' Season for Lyme and Other Diseases
Laura Landro :WSJ : March 26, 2012
They can wait for months, clinging to the edge of a blade of grass or a bush, for the whiff of an animal's breath or vibration telling them a host approaches.
They are ticks—and when they attach to your skin and feed on your blood over many days, they can transmit diseases. Often hard to diagnose and tricky to treat, tick-borne illnesses—led by Lyme disease—can cause symptoms ranging from headache and muscle aches, to serious and long-term complications that affect the brain, joints, heart, nerves and muscles. Preventing bites to head off illness is particularly important, experts say, because the complex interaction between ticks, their hosts, bacteria and habitats isn't completely understood.
Warmer temperatures are leading some experts to warn that tick activity is starting earlier than usual this year, putting more people at risk.
"This is going to be a horrific season, especially for Lyme," says Leo J. Shea III, a clinical assistant professor at the Rusk Institute of Rehabilitation Medicine, part of New York University Langone Medical Center. He is also president of the International Lyme and Associated Diseases Society.
Lyme may be identified after a tick bite, for example, by an expanding rash that looks like a bull's-eye. But that doesn't always happen, and even after a tick bite, antibodies against Lyme may not show up for weeks, so early blood tests can turn up false negatives. Symptoms such as fatigue, chills, fever, headache and swollen lymph nodes may be misdiagnosed. Some infections can go undetected for months or even years. When caught early, tick-borne diseases can be treated successfully with two weeks of antibiotics, but doctors and researchers still argue about whether a chronic form of Lyme exists, and whether it should be treated with longer courses of the drugs.
Between 1992 and 2010, reported cases of Lyme doubled, to nearly 23,000, and there were another 7,600 probable cases in 2010, according to the Centers for Disease Control and Prevention. But CDC officials say the true incidence of Lyme may be three times higher. Other infections, including babesiosis, Rocky Mountain spotted fever, and anaplasmosis are steadily increasing, too. While not all ticks carry disease, some may spread two or three types of infections in a single bite.
Researchers say the primary reasons for the global rise of tick-borne illness include the movement of people into areas where animal hosts and tick populations are abundant, and growth in the population of animals that carry ticks, including deer, squirrels and mice.
"We haven't even begun to scratch the surface of the type of pathogens ticks can be harboring and transmitting," says Kristy K. Bradley, state epidemiologist and public health veterinarian for the Oklahoma State Department of Health.
Animals "are a traveling tick parade," Dr. Bradley adds, with pet dogs "bringing them into the home and onto furniture and carpets."
Regularly checking the body for ticks can reduce exposure, because removing them quickly can prevent transmission of disease, says Kirby C. Stafford III, chief entomologist at the Connecticut Agricultural Experiment Station, or CAES, in New Haven.
Showering or bathing quickly after being outdoors can also help wash off crawling ticks or make it easier to find them. What won't work: simply jumping in the pool or lake, because ticks can hide in bathing suits and don't quickly drown in water. There are tick-repellent sprays for clothes, but it is wise to immediately launder and dry garments at high temperatures after hiking or golfing in areas where ticks are present.
The CDC is conducting the first study of its kind to determine whether spraying the yard for ticks can not only kill pests, but also reduce human disease. Participating households agreed to be randomly assigned a single spray with a common pesticide, bifenthrin, or one that contained water, without knowing which they would receive.
Paul Mead, chief of epidemiology and surveillance activity at CDC's bacterial-illness branch, says preliminary results from about 1,500 households indicate that a spray reduced the tick population by 60%.
"But there was far less of a reduction in tick encounters and illness," indicating that even a sharp drop in tick populations leaves infected ones behind. "We may have to completely wipe out ticks to get an effect on human illness," he says. The CDC is enrolling households for a second arm of the study and expects final results late in the fall. Organic repellents such as Alaska cedar are also being tested in other studies.
Sometimes fire is the only solution: Wildlife biologist Scott C. Williams roams Connecticut's woods armed with a propane torch to incinerate clumps of Japanese barberry, an invasive plant species that chokes off native vegetation and provides a favorite habitat for ticks.
The CAES program to control the red-berried shrub—once cultivated as decorative—is part of the growing, multifaceted effort around the country to prevent the spread of infections like Lyme, which Mr. Williams has been treated for twice since beginning the project in 2007.
Dr. Bradley's home state of Oklahoma is one of several working with the One Health Initiative, a global program to improve communication between physicians and veterinarians to prevent the spread of infectious disease from animals to people, such as recommending tick collars, sprays or topical treatments with pesticides for dogs.
One problem, says Laura Kahn, a founder of One Health, is that "vets don't like to advise people on human health and physicians don't typically think about these things, so it falls through the cracks." About 75% of new diseases that have emerged globally in the last 30 years are spread from animals to people, many of them through ticks, says Dr. Kahn, who is also a science-and-global-security researcher at Princeton University.
Jason Lipsett, 21 years old, was diagnosed with Lyme in November, after suffering for three years with symptoms including problems with his jaw, recurring sinus infections, migraines and trouble sleeping. He had to give up playing tennis and take a medical leave from Bentley University in Waltham Mass., where he was a senior. He doesn't remember being bitten by a tick but had been camping in the woods in New Hampshire and often spent time outdoors during the summers at a family home in Cape Cod.
Doctors told him he might have chronic fatigue syndrome or fibromyalgia. Depressed about his health, he began seeing a therapist who knew about the symptoms of Lyme and referred him to another physician. That doctor determined he had Lyme—and babesiosis, caused by a parasite that destroys red blood cells.
Mr. Lipsett has been on an antibiotic regimen for four months. He says he has felt better each month and that he is prepared to stay on the drugs until he and his doctor are confident the disease is under control. He is making up courses and hopes to graduate next year. He plans to participate in a 5K run on April 29 to raise money for Time for Lyme, a Stamford, Conn. nonprofit that supports research into Lyme and other tick-borne illnesses.
"I may not be able to run, but I'm going to try to walk it," he says.
Warm Weather Means Ticks Will Be Out Early; A 'Horrific' Season for Lyme and Other Diseases
Laura Landro :WSJ : March 26, 2012
They can wait for months, clinging to the edge of a blade of grass or a bush, for the whiff of an animal's breath or vibration telling them a host approaches.
They are ticks—and when they attach to your skin and feed on your blood over many days, they can transmit diseases. Often hard to diagnose and tricky to treat, tick-borne illnesses—led by Lyme disease—can cause symptoms ranging from headache and muscle aches, to serious and long-term complications that affect the brain, joints, heart, nerves and muscles. Preventing bites to head off illness is particularly important, experts say, because the complex interaction between ticks, their hosts, bacteria and habitats isn't completely understood.
Warmer temperatures are leading some experts to warn that tick activity is starting earlier than usual this year, putting more people at risk.
"This is going to be a horrific season, especially for Lyme," says Leo J. Shea III, a clinical assistant professor at the Rusk Institute of Rehabilitation Medicine, part of New York University Langone Medical Center. He is also president of the International Lyme and Associated Diseases Society.
Lyme may be identified after a tick bite, for example, by an expanding rash that looks like a bull's-eye. But that doesn't always happen, and even after a tick bite, antibodies against Lyme may not show up for weeks, so early blood tests can turn up false negatives. Symptoms such as fatigue, chills, fever, headache and swollen lymph nodes may be misdiagnosed. Some infections can go undetected for months or even years. When caught early, tick-borne diseases can be treated successfully with two weeks of antibiotics, but doctors and researchers still argue about whether a chronic form of Lyme exists, and whether it should be treated with longer courses of the drugs.
Between 1992 and 2010, reported cases of Lyme doubled, to nearly 23,000, and there were another 7,600 probable cases in 2010, according to the Centers for Disease Control and Prevention. But CDC officials say the true incidence of Lyme may be three times higher. Other infections, including babesiosis, Rocky Mountain spotted fever, and anaplasmosis are steadily increasing, too. While not all ticks carry disease, some may spread two or three types of infections in a single bite.
Researchers say the primary reasons for the global rise of tick-borne illness include the movement of people into areas where animal hosts and tick populations are abundant, and growth in the population of animals that carry ticks, including deer, squirrels and mice.
"We haven't even begun to scratch the surface of the type of pathogens ticks can be harboring and transmitting," says Kristy K. Bradley, state epidemiologist and public health veterinarian for the Oklahoma State Department of Health.
Animals "are a traveling tick parade," Dr. Bradley adds, with pet dogs "bringing them into the home and onto furniture and carpets."
Regularly checking the body for ticks can reduce exposure, because removing them quickly can prevent transmission of disease, says Kirby C. Stafford III, chief entomologist at the Connecticut Agricultural Experiment Station, or CAES, in New Haven.
Showering or bathing quickly after being outdoors can also help wash off crawling ticks or make it easier to find them. What won't work: simply jumping in the pool or lake, because ticks can hide in bathing suits and don't quickly drown in water. There are tick-repellent sprays for clothes, but it is wise to immediately launder and dry garments at high temperatures after hiking or golfing in areas where ticks are present.
The CDC is conducting the first study of its kind to determine whether spraying the yard for ticks can not only kill pests, but also reduce human disease. Participating households agreed to be randomly assigned a single spray with a common pesticide, bifenthrin, or one that contained water, without knowing which they would receive.
Paul Mead, chief of epidemiology and surveillance activity at CDC's bacterial-illness branch, says preliminary results from about 1,500 households indicate that a spray reduced the tick population by 60%.
"But there was far less of a reduction in tick encounters and illness," indicating that even a sharp drop in tick populations leaves infected ones behind. "We may have to completely wipe out ticks to get an effect on human illness," he says. The CDC is enrolling households for a second arm of the study and expects final results late in the fall. Organic repellents such as Alaska cedar are also being tested in other studies.
Sometimes fire is the only solution: Wildlife biologist Scott C. Williams roams Connecticut's woods armed with a propane torch to incinerate clumps of Japanese barberry, an invasive plant species that chokes off native vegetation and provides a favorite habitat for ticks.
The CAES program to control the red-berried shrub—once cultivated as decorative—is part of the growing, multifaceted effort around the country to prevent the spread of infections like Lyme, which Mr. Williams has been treated for twice since beginning the project in 2007.
Dr. Bradley's home state of Oklahoma is one of several working with the One Health Initiative, a global program to improve communication between physicians and veterinarians to prevent the spread of infectious disease from animals to people, such as recommending tick collars, sprays or topical treatments with pesticides for dogs.
One problem, says Laura Kahn, a founder of One Health, is that "vets don't like to advise people on human health and physicians don't typically think about these things, so it falls through the cracks." About 75% of new diseases that have emerged globally in the last 30 years are spread from animals to people, many of them through ticks, says Dr. Kahn, who is also a science-and-global-security researcher at Princeton University.
Jason Lipsett, 21 years old, was diagnosed with Lyme in November, after suffering for three years with symptoms including problems with his jaw, recurring sinus infections, migraines and trouble sleeping. He had to give up playing tennis and take a medical leave from Bentley University in Waltham Mass., where he was a senior. He doesn't remember being bitten by a tick but had been camping in the woods in New Hampshire and often spent time outdoors during the summers at a family home in Cape Cod.
Doctors told him he might have chronic fatigue syndrome or fibromyalgia. Depressed about his health, he began seeing a therapist who knew about the symptoms of Lyme and referred him to another physician. That doctor determined he had Lyme—and babesiosis, caused by a parasite that destroys red blood cells.
Mr. Lipsett has been on an antibiotic regimen for four months. He says he has felt better each month and that he is prepared to stay on the drugs until he and his doctor are confident the disease is under control. He is making up courses and hopes to graduate next year. He plans to participate in a 5K run on April 29 to raise money for Time for Lyme, a Stamford, Conn. nonprofit that supports research into Lyme and other tick-borne illnesses.
"I may not be able to run, but I'm going to try to walk it," he says.
Another Tick-Borne Disease to Guard Against
By Jane E. Brody : NY Times : July 30, 2012
Despite its many delights, summer also brings its fair share of pestilence. One, called babesiosis, has only recently been widely recognized as a potentially serious outdoor hazard. According to a very detailed study conducted on Block Island, R.I., it could eventually rival Lyme disease as the most common tick-borne ailment in the United States.
But with reasonable precautions, neither babesiosis nor Lyme should keep you from enjoying a romp in the grass or hike in the woods.
Babesiosis is caused by protozoans that invade red blood cells and can cause a malarialike illness. The disease has an interesting history, recently recounted in The New England Journal of Medicine by Dr. Peter J. Krause, a Yale researcher specializing in tick-borne diseases, and Edouard Vannier, an immunologist at Tufts Medical Center.
Babesiosis (pronounced buh-BEEZ-e-OH-sis) is named for Dr. Victor Babes, a Romanian pathologist who in 1888 identified the disease in cattle that had fever and blood-tainted urine. Until the mid-20th century, the disease was known only in wild and domestic animals, which can be infected by more than 100 different Babesia species.
The first human case was not recognized until 1957. A Croatian herdsman who had no spleen, an important immunological organ, died quickly of the infection, which he most likely acquired from the animals he tended. Twelve years later, the first case in an immunologically normal person was identified on Nantucket Island, and for years the disease was called Nantucket fever.
Unlike Lyme disease, which quickly leapfrogged across the country, babesiosis is spreading slowly through the Northeast and Upper Midwest, where it is increasingly recognized as the cause of a flulike summer ailment. It has been said that Lyme disease moves on the wings of birds, which some experts believe carry the bacteria causing the condition. Babesiosis, however, moves on the backs of mice and deer. Birds do not spread it.
But like the bacteria that cause Lyme disease, Babesia protozoans are transmitted to humans by ticks, which acquire the infection from the white-footed mouse and white-tailed deer. And, yes, the same tick - Ixodes scapularis, popularly called a deer tick - transmits both Lyme disease and babesiosis in this country.
The deer tick, which starts out the size of a poppy seed, requires a blood meal at every one of its developmental stages. With its hind legs clutching grass or a leaf, the tick sits patiently, holding its pincerlike front legs extended, ready to latch onto an unsuspecting mammal that happens by.
In spring or summer, that mammal could be you. In the fall, the adult tick feeds on white-tailed deer, which don't get sick. This feeding allows female ticks to produce a profusion of eggs for the next generation.
Still Uncommon, but Worrisome
"Babesiosis is already a worldwide disease, though the United States has the most cases so far," Dr. Krause said in an interview. "Its geographical distribution is growing, and we think over time it will become increasingly important relative to Lyme disease."
In 2011, the first year of national surveillance, only 1,000 cases of babesiosis were reported. But Dr. Krause's study on Block Island, which tracked the risk of infection among 70 percent of the people living there, revealed that babesiosis was one-third as common as Lyme among those who developed symptoms and nearly as common as Lyme in asymptomatic people.
Underreporting of babesiosis is expected to continue for a long time. People with only mild symptoms are unlikely to see a doctor, and without a telltale sign like the bull's-eye rash of Lyme or a simple blood test for the infection, most doctors are unlikely to diagnose babesiosis correctly, Dr. Krause said.
One-quarter of infected adults and half of infected children were free of symptoms, his study found. Yet if they donated blood, they could transmit the infection to others, with potentially dire consequences. There is no widely used test to screen blood donors for infection with Babesia.
Likewise, an infected woman could transmit the protozoans to her child during pregnancy or delivery.
The risk of a severe and possibly fatal infection is highest in newborns, adults over 50 and anyone with compromised immunity, including people with cancer, H.I.V. or a transplanted organ, and those missing the spleen.
Dr. Krause explained that the spleen "helps to clear organisms in blood that shouldn't be there."
"It produces antibodies that attack the protozoans, which are then gobbled up by macrophages, and it acts like a sieve, screening out Babesia-infected blood cells, which are too big to get through and back into circulation," he said.
Prevention and Treatment
As with Lyme disease, precautions to prevent the bite of a Babesia-bearing tick include staying on cleared trails to minimize contact with leaf litter, brush and tall grass; wearing socks with long pants tucked into them and long-sleeved shirts (not the most pleasant approach on a steamy summer day); and applying repellent to exposed skin and clothing. Products containing DEET can be applied directly to the skin and sprayed on clothing; those containing pyrethrins should be used only on clothing and shoes.
Daily tick checks should be as routine as brushing teeth for people in environments that could harbor ticks. Check everywhere, using mirrors if necessary, including underarms, groin, navel, back of the neck, behind knees, between toes, behind and in ears, and on the scalp.
If a tick is found, without delay use fine-pointed tweezers to grasp it close to the skin and pull upward with steady, even pressure. Do not twist or yank it. Then clean the area and your hands with rubbing alcohol or soap and water.
People who are infected can become ill one to four weeks after a tick bite. Common symptoms include fever, malaise, fatigue, chills and sweats, headache, muscle and joint pain, loss of appetite, cough and nausea. A blood test may reveal anemia.
Certain diagnosis comes from detecting the protozoan in a blood smear. Dr. Krause suggested that labs examine 300 microscopic fields before ruling out the disease.
While the infection clears in some people without treatment, most require a combination of antibiotics, usually atovaquone (Mepron) and azithromycin (Zithromax), for 7 to 10 days. Dr. Krause said even patients with mild symptoms should be treated because they may become severely ill at a later time or spread the infection to others through donated blood.
Babesiosis is caused by the parasite Babesia microti, a protozoa. It is usually transmitted by Ixodes scapularis, better known as the deer tick, the same small arthropod that transmits Lyme disease. Sometimes the two diseases occur together, passed on in the same bite. The disease can also be spread through blood transfusions from an infected donor.
Babesiosis is rare and occurs primarily in the Northeast and Upper Midwest — Minnesota and Wisconsin — regions of the United States. In healthy people it often causes no symptoms. However, those who are over 65 or who have some type of immune suppression – because of a chronic disease or medication – or those who don’t have a spleen are more likely to develop symptoms and can become quite ill or even die from this infection.
Easy to Miss
Babesiosis is difficult to diagnose, and the diagnosis is often overlooked, even in areas where infection is most common. Patients with babesiosis have few, if any, localizing signs to suggest the disease. Fever — which can be constant or, as was the case with this patient, intermittent — is common. So are shaking, chills, fatigue, loss of appetite, abdominal pain and headache. These symptoms, however, are seen in many infections.
The diagnosis is confirmed when the ring form of the protozoa is seen on a blood smear, or when the Babesia DNA is detected in the blood. Doxycycline, which is used to treat other tick-borne diseases, is ineffective against this organism. An antimalarial medication (atovaquone) plus an antibiotic (azithromycin) are first-line treatments against this infection. Improvement is usually seen within 48 hours of starting the drugs.
Although the infection will often resolve without treatment, all who are diagnosed with the disease should be treated since, in rare cases, the bug will persist and become symptomatic if a patient later develops some immune system problem or has his spleen removed.
LYME DISEASE SERIES
By Beth Daley : Boston Globe : 3 part series ; August, 2013
Dr. Allen Steere, a slender Massachusetts General Hospital rheumatologist, clicked on a slide as he recounted the early days of Lyme disease, the illness that became the singular focus of his career.
Suddenly, from the back of the Boston University meeting room, a man in a blazer and scarf jumped from his seat.
“Allen Steere’s papers killed my sister!’’ Timothy Grey shouted as some 60 stunned attendees at the January dinner talk watched nervously. “She died and you have her blood on your hands.’’
It was happening again. Steere recognized Grey, a 44-year-old Michigan filmmaker who had been harassing him for several years. Grey is part of the “counterculture,’’ Steere told the audience, raising his normally soft voice to be heard over the intruder.
Two men began herding Grey to the door. “You are a monster,” he declared.
Nearly 40 years after Steere discovered Lyme, Grey’s outburst highlights the rising anger and activism of patient groups that are hugely dissatisfied and mistrustful of the medical establishment’s response.
As the disease continues to spread across the Northeast, the most basic questions remain mired in polarizing controversy: Who has the disease? Why do some people remain sick after treatment? And how should they be cared for?
It’s a debate with significance far beyond Lyme, reflecting gaping differences in how segments of the medical world and the public cope with scientific uncertainty. The battle lines have been drawn for years, but as the number of altered lives rises, the Lyme divide is widening.
Steere, as the nation’s most prominent Lyme researcher and advocate for a cautious, science-based approach to diagnosing and treating Lyme patients, has become an iconic villain for many patients.
In 1975, a young Steere began investigating a cluster of children in Lyme, Conn., with arthritis, a rare diagnosis at that age. Today, Lyme disease, often transmitted by a deer tick no bigger than a poppy seed, is the second most commonly reported infectious disease in New England, second only to chlamydia.
Massachusetts is an epicenter for the illness. Lyme patients reside in every part of the state and 15,000 to 30,000 people here will likely get the disease this year when a tick crawls on them to stealthily feed on their blood, usually in the spring and summer. They could also get four other — though less prevalent — diseases the parasite delivers, including one just discovered in the Northeast.
Lyme and ticks, however, appear to be a low priority for public health authorities. More than $10 million is spent each year in Massachusetts to control mosquitos that spread occasionally fatal West Nile virus and Eastern equine encephalitis.
Tick-borne diseases receive only about $60,000 annually in state funding and a fraction of the attention, though Lyme makes many more people miserable for weeks on end with flu-like symptoms and fatigue. Patients who go untreated have reported facial paralysis, arthritis, heart blockage, extreme fatigue, mental decline, irritability, depression, and other problems, although very rarely death.
Grey’s pursuit of Steere represents a boiling over of patient frustration after a generation of controversy about the disease.
The 70-year-old doctor has come to conclude that Lyme — which lacks a sure-fire diagnostic test — can be a catchall label for vague and wide-ranging health complaints. For those who truly have it, Steere says, a month or less of antibiotics almost always will rid the body of infection, although up to three months may be needed to treat Lyme arthritis, a later-stage symptom of the disease.
This is largely the consensus among infectious-diseases specialists, but thousands of patients and some doctors say Lyme is far more prevalent and that the infection can persist in the body even after being treated agressively with antibiotics. One of the ways this chronic form of Lyme can be managed or cured, many of them say, is for patients to take more antibiotics for longer periods of time.
Insurance companies, citing the mainstream doctors’ conclusions, often refuse to pay for this medicine that can regularly cost more than $5,000 a month. A heartbroken and angry Grey is convinced that his sister Lori Hall-Steele’s 2008 death came in part from doctors denying her antibiotics for Lyme.
Physicians can be dismissive toward patients who believe they have chronic Lyme because their claims cannot be proven, and some are outright disrespectful. A National Institutes of Health Lyme program officer referred to Lyme advocates as “Lyme Loonies” in a 2007 e-mail to a colleague that a documentary filmmaker obtained through the Freedom of Information Act.
Some doctors that diagnose chronic Lyme and treat these patients have been investigated and sanctioned by state medical boards. The issue is so politically charged, doctors rarely advertise they treat chronic Lyme. Patients find them through word of mouth or through an Internet-based system that they must register for to receive physicians’ names.
Now, Lyme advocates are bypassing the medical establishment altogether: Doctors who have treated hundreds of chronically ill patients have created their own medical association and are holding scientific conferences, while activists are convincing politicians to pass laws to protect doctors and force insurance companies to pay for medicine. One such bill is pending before the Massachusetts Legislature.
This bitter distrust between the medical establishment and some patients reflects a broader trend in health care. For generations, doctors treated sick patients with no absolute diagnosis by spending time with them and easing symptoms. But in today’s cost-cutting health care landscape, physicians are pressed for time and an increasing emphasis is placed on testing to reach a definitive diagnosis. Without one, there is often little treatment for patients, no reimbursement for doctors.
Frustrated at having no explanation for patients’ suffering, some doctors push them toward psychiatrists, both patients and doctors say. Shunned, patients hunt answers elsewhere. In the end, the public and even many doctors on the front line are left with questions.
“It’s a very confusing illness for physicians and patients,’’ said Dr. Laurel Miller, infectious disease medical director of Cape Cod Healthcare, which runs Cape Cod and Falmouth hospitals, where at least one doctor treats chronic Lyme while others do not. “There is a lot of anxiety.”
From the top floor of a Massachusetts General Hospital research lab in Charlestown, Steere is in the crosshairs.
“I never imagined that this might happen,’’ he said.
Swollen knees in paradise
Polly Murray was worried. The 42-year-old Connecticut artist’s family had been plagued by relapsing health problems for years. A fastidious record-keeper, she had documented her four children’s rashes, flu-like illnesses, swollen knees, and other symptoms, as well as her own. And she knew other children and adults in their woodsy, idyllic town of Lyme who complained of the same symptoms.
By 1975, one son, Todd, had been diagnosed with juvenile rheumatoid arthritis and another, Alex, was being treated for severe knee swelling, stiffness, and pain that doctors said was from some sort of trauma. After being told repeatedly by physicians that her children’s maladies were unrelated, Murray, nonetheless called the state health agency to investigate. Another mother in town did the same.
The orthopedic doctor caring for Murray’s family was outraged. Afterward, recalled Todd Murray, now a doctor himself, “the tears were streaming down her face at the hostility and injustice she had faced.”
Those calls helped lead Murray to Steere, then a 32-year-old rheumatology fellow at Yale University.
A gifted violinist, Steere had studied at the elite Juilliard School and played in a string quartet with rising star Itzhak Perlman at a summer camp in upstate New York when they were both in their teens. (A friendship would later rekindle when Perlman’s daughter came down with rheumatoid arthritis.)
An uncontrollable finger spasm forced Steere to put down the violin, but he attacked medicine with the same quiet determination he did music. With his gentlemanly demeanor and musician’s soul, “he was the first one who really listened,’’ said Alex Murray, now a wine specialist who works at Legal Sea Foods corporate headquarters in South Boston.
As the investigation took shape, Steere and his colleagues honed in on children. That so many had the usually rare diagnosis of arthritis suggested a common cause. Valuable leads came in through school nurses, area doctors, and other public health officials. Steere ultimately found 39 children in three communities with inflammatory arthritis; some of their parents had it too.
Many lived in forested neighborhoods. Almost all got sick in the summer and early fall. Some reported a rash, much like those known in Europe from tick bites, before coming down with symptoms. Yet none of the patients tested positive for any known tick-borne disease.
Steere published the first paper on a new disease in 1977, calling it Lyme arthritis. Crawling ticks seemed the likely culprit. He suspected they spread a virus, but attention soon focused on a bacteria. In 1982 the culprit was found: corkscrew-shaped microbes known as spirochetes were identified in the ticks’ gut.
Ticks get Lyme by feeding as larvae on white-footed mice, birds or other animals that carry the bacteria. After molting, poppy-seed sized nymphs wait on tall grasses or in leaf litter in the spring and summer to grasp hold of a person, deer or other passing animal for their next blood meal. The Lyme bacteria, or the four other pathogens, can be transmitted as they feed. The many mobile animals ticks latch onto help spread the parasite.
Lyme disease’s history is long and it likely existed throughout the northeastern United States at one time. As colonists cut down trees for farmland and as deer were hunted, deer ticks were likely driven to isolated wooded regions such as upper Michigan and Long Island, according to Durland Fish, a Yale epidemiologist and ecologist.
Trees began to grow back as farms were abandoned. Deer populations began rebounding and suburbia was carved into the young forest, ultimately bringing people into close contact with the Lyme-carrying ticks — in backyards, along the edges of soccer fields, hidden in the soft fur of dogs and cats.
By the mid-1980s, Lyme’s broad array of symptoms, which mirrored so many other diseases, grabbed headlines. Steere, who was quickly becoming one of the world’s premiere Lyme researchers (he has published over 300 scholarly papers on the disease), was inundated with calls and visits from patients.
Some of the patients he carefully examined clearly had Lyme, reflecting the growing spread of the disease. But many came in convinced they had Lyme although they had never tested positive and did not have classic symptoms. Other doctors were seeing the same trend.
Steere watched it all with a growing sense of unease.
Uncertainty and ambiguity
Twice a day, seven days a week, a heavy-duty course of intravenous antibiotics flows into Scott “Scoot” Caseau’s arm at Cape Cod Hospital in Hyannis.
“This is the only thing that makes me feel better,” said Caseau, a burly Harley-Davidson devotee who has suffered from debilitating headaches, fatigue, and joint pain for more than 15 years. After tests for diseases from AIDS to Lyme came up negative, Caseau found what patients call a “Lyme literate” doctor. His blood was sent to a lab that interprets Lyme tests more liberally than what the US Centers for Disease Control and Prevention recommends. The lab said he had Lyme, along with other tick-borne diseases.
Lyme disease can be difficult to identify and doctors use both symptoms and tests to diagnose the disease. A common early calling card — a bull’s-eye rash around the bite — does not occur in everyone; while others don’t notice it. Tests are indirect, looking for antibodies the body produces to fight the infection, not the bacteria itself. A person who has early Lyme might not have begun producing antibodies yet. Conversely, after the infection is long gone, antibodies may persist in the blood, resulting in a positive test.
Steere helped develop diagnostic and treatment guidelines for doctors through the Infectious Disease Society of America, one of the country’s largest medical associations, and most hospitals and doctors rely on these standards.
While up to 25 percent of treated Lyme patients may still feel unwell after treatment, he says that there is no evidence it is from an active infection and that most feel better within weeks or months without more treatment. To continue to prescribe antibiotics for many more months or years, he says, is unnecessary and could do more harm to the patient than good.
Lyme advocates say the medical group’s guidelines present a too-simplistic picture of Lyme, missing thousands of patients and cutting others off from a cure. They say Lyme can last years, decades even, and point to long lists of patients who have gotten better from continued use of antibiotics. Many want the infectious-disease association to rewrite the guidelines to allow treatment to be guided by the clinical presentation of individual patients, which can greatly vary.
“Lyme is the only thing I have ever tested positive for,’’ a matter-of-fact Caseau said recently in the kitchen of his neat, Hyannis ranch home. He has been on intravenous antibiotics on and off for about eight years, one time for 2½ years straight.
Caseau, on disability because of Lyme, is one of the lucky ones: His current antibiotics, which cost $800 a day, are covered by the federal Medicare program and private insurance.
Caseau is the sort of patient Steere and his colleagues were concerned about when they published a paper in 1993 saying that Lyme was becoming a diagnosis for a variety of other poorly understood medical conditions, such as chronic fatigue syndrome and fibromyalgia. Lyme, they concluded, was often overdiagnosed.
Many Lyme patients were outraged and hurt: Not only were they told they were not sick with Lyme by the man who had discovered it, the paper’s conclusions seemed to dismiss many of them. Activists, already angry at him, began showing up at more talks he gave; bodyguards were hired for a time to protect him.
Meanwhile, the growing open-ended use of antibiotics to treat patients diagnosed with Lyme was drawing scrutiny from the medical establishment despite patients’ — and some doctors’ — insistence that the drugs cured the disease or made patients feel better. Today, that use of antibiotics continues to be one of the most controversial aspects of the “Lyme Wars”, as some doctors and patients call it.
In the early 1990s, the CDC published a cautionary study of 14 children who had to have their gallbladders removed and 22 suffering bloodstream infections because of long use of IV antibiotics for Lyme.
State medical boards began launching investigations of doctors who treated patients for chronic Lyme, including Caseau’s current physician, a psychiatrist named Bernard Raxlen. Charges that he improperly diagnosed and treated Lyme patients were dismissed in Connecticut, although he was reprimanded on lesser charges for failing to turn over patient records. Raxlen, now based in Manhattan, says he has never been found guilty of mistreating a patient and is committed to helping people with tick-borne diseases.
Health plans, listening to the Infectious Disease Society of America, limited coverage of antibiotics. Lyme support groups are rife with patient stories of mortgaged homes and sold cars to afford long-term treatment.
Less than a decade after Connecticut Governor John Rowland declared Allen Steere day in 1998 to thank him for his contributions to understanding Lyme, the state’s attorney general launched an investigation into the infectious-disease society’s guidelines and the people who developed them, which included Steere. In a settlement, both sides agreed to have an impartial panel review the medical group’s guidelines, and it upheld them.
But that didn’t settle matters — the sides had too much contempt for each other.
The Lyme advocates had already embarked on a new strategy: Ignore Steere’s world altogether.
A parallel world
Almost 400 miles from Steere’s office, about 150 doctors, nurses, and health care workers crammed into a small conference room in Hershey, Pa. The April meeting was the first US regional conference of the International Lyme and Associated Diseases Society, a medical group of doctors and health professionals created in part to counter the Infectious Disease Society of America. The event was so popular that organizers had to turn away 50 people.
Doctors and researchers spoke in rapid succession about the best protocols for antibiotics, supplements and other treatments for chronic Lyme. Many were circumspect and scientifically cautious, but others spoke more freely, closely linking Lyme to a host of other ailments. Exhibitors in an adjacent hall advertised nutritional supplements and Lyme testing companies.
“We have a different conceptual belief system’’ than research scientists, said Dr. Robert Bransfield, a New Jersey psychiatrist and former ILADS president who researches links between suicide, depression, and Lyme and who was one of the speakers at the meeting. “We adhere to a broader definition of Lyme disease” borne out of years of experience treating patients. “We are the clinicians responsible for seeing these patients year after year.”
Lyme patients and advocates say they just want answers. Frustrated with a lack of government research into persistent infection, they have begun to fund such work themselves.
The Stamford, Conn.-based Lyme Research Alliance has raised more than $6 million in the last 10 years to fund research, including most of the funding to endow Columbia University’s Medical Center Lyme and Tick-Borne Diseases Research Center. Another Lyme group, the Tick-Borne Disease Alliance has partnered with the XPrize Foundation to encourage research into a better diagnostic test for Lyme.
A few members of the medical establishment have “trashed our patients and organizations,’’ said Pat Smith, president of the Lyme Disease Association, a large national group that works on education, research, and patient support. “Those patients and organizations have come together to provide the resources, research, education, and advocacy required to overcome [these] negative images.”
Politically, the adovocates are also gaining ground. Massachusetts, Rhode Island, New Hampshire, and Connecticut have passed laws in recent years to protect doctors from being disciplined by medical boards for continued use of antibiotics for chronic Lyme; other Lyme activist laws have been passed around the country. A bill is now pending in Massachusetts to require insurers to pay for those antibiotics. Its prospects are not clear, although a bill was passed in recent years to protect doctors prescribing longer term antibiotics.
Doctors on the front lines — and the public — are often left confused by the polarized debate and lack of a surefire diagnostic test.
On Martha’s Vineyard, a hotspot for the disease, health care workers met last month to come up with a unified approach to dealing with patients who may be in the early stages of the disease. Those in attendance suggested treating people with antibiotics as a precaution, rather than waiting to see if other symptoms develop.
So controversial is the subject of chronic Lyme, 11 out of 15 community doctors on Cape Cod and Greater Boston who were contacted by the Globe refused to speak publicly about the disease, or did not return calls or e-mails.
Mad at establishment
The last words Timothy Grey says his 43-year-old sister uttered were aimed at the medical world that denied her antibiotics: Make them pay, she said, accompanied by an obscenity.
Grey spends much of his time trying to do so. He filmed a 2009 documentary on his sister’s death, which her doctors attributed to ALS.
Called “Under the Eightball,” it blames the medical establishment for deliberately downplaying the dangers of Lyme, in addition to accusing the government of developing Lyme as biowarfare.
He interrupted Steere once in 2009 while he was with a patient. A friend filmed the exchange, and it was posted on You Tube. Later, Grey confronted Steere again, in a Massachusetts General cafeteria. Steere called security and Grey left.
“This is what activists do,’’ said Grey, from his Michigan home. Others in the Lyme advocacy community distance themselves greatly from Grey, saying his confrontational tactics do not help their cause. Still, many are deeply upset with Steere and a handful of other doctors they view as key gatekeepers to getting federal research money to study persistent infection and other aspects of Lyme.
Steere says he is embarrassed by Grey’s attacks, and appears at times pained by activists’ harsh portrayal of him as a villain on numerous websites. “What I think is considerably nuanced,” Steere said during an interview in his small office, with orderly piles of research papers stacked on his desk. “I don’t think that [patients’ sickness] is all in their head.”
After Grey was escorted from the Boston Unversity room that January night, Steere paused. “Lyme disease has been a difficult journey,’’ he told the audience. “[This] gives you more of a feel of what it is like to work on Lyme disease.”
And then he continued with his talk in a calm, measured voice.
By Beth Daley : Boston Globe : 3 part series ; August, 2013
Dr. Allen Steere, a slender Massachusetts General Hospital rheumatologist, clicked on a slide as he recounted the early days of Lyme disease, the illness that became the singular focus of his career.
Suddenly, from the back of the Boston University meeting room, a man in a blazer and scarf jumped from his seat.
“Allen Steere’s papers killed my sister!’’ Timothy Grey shouted as some 60 stunned attendees at the January dinner talk watched nervously. “She died and you have her blood on your hands.’’
It was happening again. Steere recognized Grey, a 44-year-old Michigan filmmaker who had been harassing him for several years. Grey is part of the “counterculture,’’ Steere told the audience, raising his normally soft voice to be heard over the intruder.
Two men began herding Grey to the door. “You are a monster,” he declared.
Nearly 40 years after Steere discovered Lyme, Grey’s outburst highlights the rising anger and activism of patient groups that are hugely dissatisfied and mistrustful of the medical establishment’s response.
As the disease continues to spread across the Northeast, the most basic questions remain mired in polarizing controversy: Who has the disease? Why do some people remain sick after treatment? And how should they be cared for?
It’s a debate with significance far beyond Lyme, reflecting gaping differences in how segments of the medical world and the public cope with scientific uncertainty. The battle lines have been drawn for years, but as the number of altered lives rises, the Lyme divide is widening.
Steere, as the nation’s most prominent Lyme researcher and advocate for a cautious, science-based approach to diagnosing and treating Lyme patients, has become an iconic villain for many patients.
In 1975, a young Steere began investigating a cluster of children in Lyme, Conn., with arthritis, a rare diagnosis at that age. Today, Lyme disease, often transmitted by a deer tick no bigger than a poppy seed, is the second most commonly reported infectious disease in New England, second only to chlamydia.
Massachusetts is an epicenter for the illness. Lyme patients reside in every part of the state and 15,000 to 30,000 people here will likely get the disease this year when a tick crawls on them to stealthily feed on their blood, usually in the spring and summer. They could also get four other — though less prevalent — diseases the parasite delivers, including one just discovered in the Northeast.
Lyme and ticks, however, appear to be a low priority for public health authorities. More than $10 million is spent each year in Massachusetts to control mosquitos that spread occasionally fatal West Nile virus and Eastern equine encephalitis.
Tick-borne diseases receive only about $60,000 annually in state funding and a fraction of the attention, though Lyme makes many more people miserable for weeks on end with flu-like symptoms and fatigue. Patients who go untreated have reported facial paralysis, arthritis, heart blockage, extreme fatigue, mental decline, irritability, depression, and other problems, although very rarely death.
Grey’s pursuit of Steere represents a boiling over of patient frustration after a generation of controversy about the disease.
The 70-year-old doctor has come to conclude that Lyme — which lacks a sure-fire diagnostic test — can be a catchall label for vague and wide-ranging health complaints. For those who truly have it, Steere says, a month or less of antibiotics almost always will rid the body of infection, although up to three months may be needed to treat Lyme arthritis, a later-stage symptom of the disease.
This is largely the consensus among infectious-diseases specialists, but thousands of patients and some doctors say Lyme is far more prevalent and that the infection can persist in the body even after being treated agressively with antibiotics. One of the ways this chronic form of Lyme can be managed or cured, many of them say, is for patients to take more antibiotics for longer periods of time.
Insurance companies, citing the mainstream doctors’ conclusions, often refuse to pay for this medicine that can regularly cost more than $5,000 a month. A heartbroken and angry Grey is convinced that his sister Lori Hall-Steele’s 2008 death came in part from doctors denying her antibiotics for Lyme.
Physicians can be dismissive toward patients who believe they have chronic Lyme because their claims cannot be proven, and some are outright disrespectful. A National Institutes of Health Lyme program officer referred to Lyme advocates as “Lyme Loonies” in a 2007 e-mail to a colleague that a documentary filmmaker obtained through the Freedom of Information Act.
Some doctors that diagnose chronic Lyme and treat these patients have been investigated and sanctioned by state medical boards. The issue is so politically charged, doctors rarely advertise they treat chronic Lyme. Patients find them through word of mouth or through an Internet-based system that they must register for to receive physicians’ names.
Now, Lyme advocates are bypassing the medical establishment altogether: Doctors who have treated hundreds of chronically ill patients have created their own medical association and are holding scientific conferences, while activists are convincing politicians to pass laws to protect doctors and force insurance companies to pay for medicine. One such bill is pending before the Massachusetts Legislature.
This bitter distrust between the medical establishment and some patients reflects a broader trend in health care. For generations, doctors treated sick patients with no absolute diagnosis by spending time with them and easing symptoms. But in today’s cost-cutting health care landscape, physicians are pressed for time and an increasing emphasis is placed on testing to reach a definitive diagnosis. Without one, there is often little treatment for patients, no reimbursement for doctors.
Frustrated at having no explanation for patients’ suffering, some doctors push them toward psychiatrists, both patients and doctors say. Shunned, patients hunt answers elsewhere. In the end, the public and even many doctors on the front line are left with questions.
“It’s a very confusing illness for physicians and patients,’’ said Dr. Laurel Miller, infectious disease medical director of Cape Cod Healthcare, which runs Cape Cod and Falmouth hospitals, where at least one doctor treats chronic Lyme while others do not. “There is a lot of anxiety.”
From the top floor of a Massachusetts General Hospital research lab in Charlestown, Steere is in the crosshairs.
“I never imagined that this might happen,’’ he said.
Swollen knees in paradise
Polly Murray was worried. The 42-year-old Connecticut artist’s family had been plagued by relapsing health problems for years. A fastidious record-keeper, she had documented her four children’s rashes, flu-like illnesses, swollen knees, and other symptoms, as well as her own. And she knew other children and adults in their woodsy, idyllic town of Lyme who complained of the same symptoms.
By 1975, one son, Todd, had been diagnosed with juvenile rheumatoid arthritis and another, Alex, was being treated for severe knee swelling, stiffness, and pain that doctors said was from some sort of trauma. After being told repeatedly by physicians that her children’s maladies were unrelated, Murray, nonetheless called the state health agency to investigate. Another mother in town did the same.
The orthopedic doctor caring for Murray’s family was outraged. Afterward, recalled Todd Murray, now a doctor himself, “the tears were streaming down her face at the hostility and injustice she had faced.”
Those calls helped lead Murray to Steere, then a 32-year-old rheumatology fellow at Yale University.
A gifted violinist, Steere had studied at the elite Juilliard School and played in a string quartet with rising star Itzhak Perlman at a summer camp in upstate New York when they were both in their teens. (A friendship would later rekindle when Perlman’s daughter came down with rheumatoid arthritis.)
An uncontrollable finger spasm forced Steere to put down the violin, but he attacked medicine with the same quiet determination he did music. With his gentlemanly demeanor and musician’s soul, “he was the first one who really listened,’’ said Alex Murray, now a wine specialist who works at Legal Sea Foods corporate headquarters in South Boston.
As the investigation took shape, Steere and his colleagues honed in on children. That so many had the usually rare diagnosis of arthritis suggested a common cause. Valuable leads came in through school nurses, area doctors, and other public health officials. Steere ultimately found 39 children in three communities with inflammatory arthritis; some of their parents had it too.
Many lived in forested neighborhoods. Almost all got sick in the summer and early fall. Some reported a rash, much like those known in Europe from tick bites, before coming down with symptoms. Yet none of the patients tested positive for any known tick-borne disease.
Steere published the first paper on a new disease in 1977, calling it Lyme arthritis. Crawling ticks seemed the likely culprit. He suspected they spread a virus, but attention soon focused on a bacteria. In 1982 the culprit was found: corkscrew-shaped microbes known as spirochetes were identified in the ticks’ gut.
Ticks get Lyme by feeding as larvae on white-footed mice, birds or other animals that carry the bacteria. After molting, poppy-seed sized nymphs wait on tall grasses or in leaf litter in the spring and summer to grasp hold of a person, deer or other passing animal for their next blood meal. The Lyme bacteria, or the four other pathogens, can be transmitted as they feed. The many mobile animals ticks latch onto help spread the parasite.
Lyme disease’s history is long and it likely existed throughout the northeastern United States at one time. As colonists cut down trees for farmland and as deer were hunted, deer ticks were likely driven to isolated wooded regions such as upper Michigan and Long Island, according to Durland Fish, a Yale epidemiologist and ecologist.
Trees began to grow back as farms were abandoned. Deer populations began rebounding and suburbia was carved into the young forest, ultimately bringing people into close contact with the Lyme-carrying ticks — in backyards, along the edges of soccer fields, hidden in the soft fur of dogs and cats.
By the mid-1980s, Lyme’s broad array of symptoms, which mirrored so many other diseases, grabbed headlines. Steere, who was quickly becoming one of the world’s premiere Lyme researchers (he has published over 300 scholarly papers on the disease), was inundated with calls and visits from patients.
Some of the patients he carefully examined clearly had Lyme, reflecting the growing spread of the disease. But many came in convinced they had Lyme although they had never tested positive and did not have classic symptoms. Other doctors were seeing the same trend.
Steere watched it all with a growing sense of unease.
Uncertainty and ambiguity
Twice a day, seven days a week, a heavy-duty course of intravenous antibiotics flows into Scott “Scoot” Caseau’s arm at Cape Cod Hospital in Hyannis.
“This is the only thing that makes me feel better,” said Caseau, a burly Harley-Davidson devotee who has suffered from debilitating headaches, fatigue, and joint pain for more than 15 years. After tests for diseases from AIDS to Lyme came up negative, Caseau found what patients call a “Lyme literate” doctor. His blood was sent to a lab that interprets Lyme tests more liberally than what the US Centers for Disease Control and Prevention recommends. The lab said he had Lyme, along with other tick-borne diseases.
Lyme disease can be difficult to identify and doctors use both symptoms and tests to diagnose the disease. A common early calling card — a bull’s-eye rash around the bite — does not occur in everyone; while others don’t notice it. Tests are indirect, looking for antibodies the body produces to fight the infection, not the bacteria itself. A person who has early Lyme might not have begun producing antibodies yet. Conversely, after the infection is long gone, antibodies may persist in the blood, resulting in a positive test.
Steere helped develop diagnostic and treatment guidelines for doctors through the Infectious Disease Society of America, one of the country’s largest medical associations, and most hospitals and doctors rely on these standards.
While up to 25 percent of treated Lyme patients may still feel unwell after treatment, he says that there is no evidence it is from an active infection and that most feel better within weeks or months without more treatment. To continue to prescribe antibiotics for many more months or years, he says, is unnecessary and could do more harm to the patient than good.
Lyme advocates say the medical group’s guidelines present a too-simplistic picture of Lyme, missing thousands of patients and cutting others off from a cure. They say Lyme can last years, decades even, and point to long lists of patients who have gotten better from continued use of antibiotics. Many want the infectious-disease association to rewrite the guidelines to allow treatment to be guided by the clinical presentation of individual patients, which can greatly vary.
“Lyme is the only thing I have ever tested positive for,’’ a matter-of-fact Caseau said recently in the kitchen of his neat, Hyannis ranch home. He has been on intravenous antibiotics on and off for about eight years, one time for 2½ years straight.
Caseau, on disability because of Lyme, is one of the lucky ones: His current antibiotics, which cost $800 a day, are covered by the federal Medicare program and private insurance.
Caseau is the sort of patient Steere and his colleagues were concerned about when they published a paper in 1993 saying that Lyme was becoming a diagnosis for a variety of other poorly understood medical conditions, such as chronic fatigue syndrome and fibromyalgia. Lyme, they concluded, was often overdiagnosed.
Many Lyme patients were outraged and hurt: Not only were they told they were not sick with Lyme by the man who had discovered it, the paper’s conclusions seemed to dismiss many of them. Activists, already angry at him, began showing up at more talks he gave; bodyguards were hired for a time to protect him.
Meanwhile, the growing open-ended use of antibiotics to treat patients diagnosed with Lyme was drawing scrutiny from the medical establishment despite patients’ — and some doctors’ — insistence that the drugs cured the disease or made patients feel better. Today, that use of antibiotics continues to be one of the most controversial aspects of the “Lyme Wars”, as some doctors and patients call it.
In the early 1990s, the CDC published a cautionary study of 14 children who had to have their gallbladders removed and 22 suffering bloodstream infections because of long use of IV antibiotics for Lyme.
State medical boards began launching investigations of doctors who treated patients for chronic Lyme, including Caseau’s current physician, a psychiatrist named Bernard Raxlen. Charges that he improperly diagnosed and treated Lyme patients were dismissed in Connecticut, although he was reprimanded on lesser charges for failing to turn over patient records. Raxlen, now based in Manhattan, says he has never been found guilty of mistreating a patient and is committed to helping people with tick-borne diseases.
Health plans, listening to the Infectious Disease Society of America, limited coverage of antibiotics. Lyme support groups are rife with patient stories of mortgaged homes and sold cars to afford long-term treatment.
Less than a decade after Connecticut Governor John Rowland declared Allen Steere day in 1998 to thank him for his contributions to understanding Lyme, the state’s attorney general launched an investigation into the infectious-disease society’s guidelines and the people who developed them, which included Steere. In a settlement, both sides agreed to have an impartial panel review the medical group’s guidelines, and it upheld them.
But that didn’t settle matters — the sides had too much contempt for each other.
The Lyme advocates had already embarked on a new strategy: Ignore Steere’s world altogether.
A parallel world
Almost 400 miles from Steere’s office, about 150 doctors, nurses, and health care workers crammed into a small conference room in Hershey, Pa. The April meeting was the first US regional conference of the International Lyme and Associated Diseases Society, a medical group of doctors and health professionals created in part to counter the Infectious Disease Society of America. The event was so popular that organizers had to turn away 50 people.
Doctors and researchers spoke in rapid succession about the best protocols for antibiotics, supplements and other treatments for chronic Lyme. Many were circumspect and scientifically cautious, but others spoke more freely, closely linking Lyme to a host of other ailments. Exhibitors in an adjacent hall advertised nutritional supplements and Lyme testing companies.
“We have a different conceptual belief system’’ than research scientists, said Dr. Robert Bransfield, a New Jersey psychiatrist and former ILADS president who researches links between suicide, depression, and Lyme and who was one of the speakers at the meeting. “We adhere to a broader definition of Lyme disease” borne out of years of experience treating patients. “We are the clinicians responsible for seeing these patients year after year.”
Lyme patients and advocates say they just want answers. Frustrated with a lack of government research into persistent infection, they have begun to fund such work themselves.
The Stamford, Conn.-based Lyme Research Alliance has raised more than $6 million in the last 10 years to fund research, including most of the funding to endow Columbia University’s Medical Center Lyme and Tick-Borne Diseases Research Center. Another Lyme group, the Tick-Borne Disease Alliance has partnered with the XPrize Foundation to encourage research into a better diagnostic test for Lyme.
A few members of the medical establishment have “trashed our patients and organizations,’’ said Pat Smith, president of the Lyme Disease Association, a large national group that works on education, research, and patient support. “Those patients and organizations have come together to provide the resources, research, education, and advocacy required to overcome [these] negative images.”
Politically, the adovocates are also gaining ground. Massachusetts, Rhode Island, New Hampshire, and Connecticut have passed laws in recent years to protect doctors from being disciplined by medical boards for continued use of antibiotics for chronic Lyme; other Lyme activist laws have been passed around the country. A bill is now pending in Massachusetts to require insurers to pay for those antibiotics. Its prospects are not clear, although a bill was passed in recent years to protect doctors prescribing longer term antibiotics.
Doctors on the front lines — and the public — are often left confused by the polarized debate and lack of a surefire diagnostic test.
On Martha’s Vineyard, a hotspot for the disease, health care workers met last month to come up with a unified approach to dealing with patients who may be in the early stages of the disease. Those in attendance suggested treating people with antibiotics as a precaution, rather than waiting to see if other symptoms develop.
So controversial is the subject of chronic Lyme, 11 out of 15 community doctors on Cape Cod and Greater Boston who were contacted by the Globe refused to speak publicly about the disease, or did not return calls or e-mails.
Mad at establishment
The last words Timothy Grey says his 43-year-old sister uttered were aimed at the medical world that denied her antibiotics: Make them pay, she said, accompanied by an obscenity.
Grey spends much of his time trying to do so. He filmed a 2009 documentary on his sister’s death, which her doctors attributed to ALS.
Called “Under the Eightball,” it blames the medical establishment for deliberately downplaying the dangers of Lyme, in addition to accusing the government of developing Lyme as biowarfare.
He interrupted Steere once in 2009 while he was with a patient. A friend filmed the exchange, and it was posted on You Tube. Later, Grey confronted Steere again, in a Massachusetts General cafeteria. Steere called security and Grey left.
“This is what activists do,’’ said Grey, from his Michigan home. Others in the Lyme advocacy community distance themselves greatly from Grey, saying his confrontational tactics do not help their cause. Still, many are deeply upset with Steere and a handful of other doctors they view as key gatekeepers to getting federal research money to study persistent infection and other aspects of Lyme.
Steere says he is embarrassed by Grey’s attacks, and appears at times pained by activists’ harsh portrayal of him as a villain on numerous websites. “What I think is considerably nuanced,” Steere said during an interview in his small office, with orderly piles of research papers stacked on his desk. “I don’t think that [patients’ sickness] is all in their head.”
After Grey was escorted from the Boston Unversity room that January night, Steere paused. “Lyme disease has been a difficult journey,’’ he told the audience. “[This] gives you more of a feel of what it is like to work on Lyme disease.”
And then he continued with his talk in a calm, measured voice.
Second in a series of occasional articles.
Should we kill all the deer?
That was the question facing residents of Maine’s Monhegan Island in the mid-1990s. Lyme disease caused by deer tick bites afflicted 13 percent of the year-round inhabitants. The parasites often feed on deer before laying eggs, the argument went, so wipe out the herd and we might be rid of the ticks.
After fierce debate, islanders made the wrenching decision: Hire sharpshooters.
“Everyone was sort of fond of the deer . . . but we considered this an epidemic,” said Doug Boynton, a longtime resident. More than 100 deer were shot, and today, he said, “Lyme disease is virtually nil here.”
Few other communities have followed Monhegan’s example, however. Blame the Bambi effect, as well as doubts about whether herd culling can work in places where there are dramatically more deer and people. Most other efforts to keep ticks and people apart have also foundered, even as Lyme has emerged as the second most commonly reported infectious disease in New England.
This regional epidemic has yet to trigger a broad public health response on par with prevention blitzes aimed at some other pervasive maladies. That is partly because ticks are a devious foe. Vacation spots are often loath to publicize the threat for fear of scaring off business, and the public and politicians often do not perceive Lyme as a serious malady. The result is a lopsided spending gap between prevention efforts for tick- and mosquito-borne illnesses.
“Lyme disease in Massachusetts has been an epidemic for years. However, it has not received the attention that it deserves,’’ said Representative David P. Linsky, a Natick Democrat who spearheaded a special state commission on Lyme disease that released a report this year urging the state to combat the illness more aggressively.
Ticks have stealth on their side. Often as small as a pinhead, they don’t buzz in warning and their bite is painless. At home in our backyards, soccer fields, and hiking trails, they are far more challenging to eliminate than mosquitoes. And they are ubiquitous in the very places New Englanders flock in the summer — from mountain paths to stream-side camping grounds.
Even in winter, ticks can bite on warm days, and climate change is lengthening the seasons when ticks are most active.
Yet people often don’t take simple precautions. Constant tick vigilance can be wearying — and besides, it’s geeky to pull your socks over your pants.
“It’s frustrating — we haven’t hit upon the right message yet to reach a lot of people,’’ said Tom Mather, a University of Rhode Island professor who runs tickencounter.org, a prevention-based website. Mather has spent years trying to come up with innovative ways to get people to spray tick repellent on clothes or tuck their pants inside socks when going for hikes. He even tried, unsuccessfully, to get the Rhode Island legislature to introduce a lottery scratch ticket dotted with ticks to raise awareness.
If Lyme is caught early, most people recover quickly with antibiotics, but up to 25 percent of people report feeling unwell after treatment — sometimes for months or years. There is enormous controversy among some doctors and members of the publicabout why these patients are sick and how long symptoms can last. But there is no doubt that Lyme is a significant health threat. Untreated, the disease can cause a range of symptoms, from facial paralysis to arthritis and heart problems, to more common complaints of fatigue and headaches. Deer ticks can also transmit four other diseases to humans.
“One bite can really change your life,” said Mather, who rarely travels without a pair of pointy tick-plucking tweezers in his pants pocket. “It seems like prevention is such a hard sell … and it shouldn’t be.”
Stealthy bugs
Tick prevention has a big problem: Us. People are slow to adopt new habits, even when they protect us from harm. Think sunscreen. Or flossing. Or exercise.
It can seem a real bother to perform daily tick checks or follow the recommended long-pants dress code while in the garden or on a hike. Others are simply oblivious, lulled into a false sense of security because, unlike a mosquito’s buzz and bite, the tiny ticks are often imperceptible. It’s hard to remain vigilant about something you cannot see or feel.
Nowhere has that response been more apparent than on Cape Cod and the Islands, which long have had some of the highest rates of Lyme disease in the Northeast. Last year, state officials said the region had 438 confirmed or probable cases of Lyme disease — although cases statewide are believed to be five to 10 times greater than reported because so many patients go undiagnosed or do not fit reporting criteria.
One 1990s-era survey of ferry passengers to Martha’s Vineyard found that while 73 percent of people had a good understanding of Lyme disease, only 22 percent performed tick checks.
“Even for those of us who preach prevention, it can be hard,’’ said Brenda Boleyn, volunteer chairwoman of the Barnstable County Lyme/Tick-borne Diseases Task Force.
And a surprising number of Vineyard tourists are not even aware of the Lyme risk. A recent survey found that 63 percent of visitors were unaware that tick-borne illnesses are a health threat on the island.
Now, a number of local agencies are working to turn the tables on ticks and disease. The Martha’s Vineyard Boards of Health Tick-Borne Illness Initiative is working to reduce severe tick-borne illnesses 75 percent by 2015.
The initiative recently provided parents of every grade-school child — one of the highest-risk populations — a brochure and DVD on how to protect against tick-borne diseases. The group, armed with a $250,000 grant from Martha’s Vineyard Hospital, is focusing on bite prevention and early symptoms recognition and treatment.
The coalition has also surveyed pharmacies that dispensed antibiotics to treat Lyme to get a clearer picture of the disease’s prevalence.
“We want this to be data-driven and sustainable,’’ said Michael Loberg, a Tisbury Board of Health commissioner and a member of the coalition.
On the Cape, the five-year-old volunteer group Lyme Awareness of Cape Cod regularly blankets the region with pamphlets and holds awareness events. A federally funded four-year experiment has placed 42 deer feeding stations on the Cape and Islands, where the animals’ heads and necks — common hiding places for ticks — rub against a pesticide applicator as they get food. The project is in its final year before being evaluated to see whether it should continue or be expanded, said Larry Dapsis, Cape Cod Cooperative Extension entomologist and deer tick project coordinator.
Dapsis, meanwhile, is intent on increasing the number of garden stores that carry permethrin, an effective tick repellent that can be sprayed on clothing, from two to 15. The chemical is not meant to be sprayed on skin.
Store managers “just need a little tick boot camp, a little education,’’ he said.
These efforts, and others across the state, often rely on shoestring funding and volunteers: Unlike the more than $10 million spent statewide on prevention of mosquito-borne diseases, the state allocates only a few tens of thousands of dollars for tick-disease education. Last year, there were 33 human cases of West Nile virus and seven cases of Eastern equine encephalitis reported in Massachusetts; both are spread by mosquitoes. There were more than 5,000 confirmed and probable cases of Lyme.
In the State House
There are signs that Lyme and ticks may soon get more attention. The Lyme special commission’s report called for the state to launch a range of prevention efforts, from aggressive public education to clearing brush from trails to exploring expanded bow hunting for deer in more parts of the state. The report called for an increase in state funding, but the Legislature and governor so far have not acted on the suggestions.
Still, a hearing is expected in coming months for a bill reintroduced in the State House this year by Representative Carolyn C. Dykema, a Holliston Democrat, that would expand the authority of the state’s mosquito control districts to include controlling the tick population.
Other headway is being made by the federal government. The Centers for Disease Control and Prevention and the US Environmental Protection Agency have convened meetings in recent years to discuss possible community-wide tick control measures that might be effective.
Disease-carrying mosquitoes are readily killed by spraying because they breed in standing water and wetlands, “but ticks are everywhere,’’ said Kirby Stafford III of the Connecticut Agricultural Experiment Station, who has written extensively on tick prevention. Ticks live under leaf litter and brush. “It’s not easy to reach them,” he said.
Yet federal officials say it is clear that more coordinated action by public health agencies is needed.
“For some reason, tick control has fallen largely on the shoulders of individual homeowners,’’ said C. Ben Beard, chief of the Bacterial Diseases Branch of the CDC. “It needs to be thought of as a community-based responsibility.”
Bambi effect
Deer ticks got their name because so many feed on the serene mammals. Deer populations have steadily increased over the last century in the Northeast, and a Rhode Island study by Mather found that five engorged ticks, each able to lay 2,500 or more eggs, can drop off a single deer every day during October and November.
“Reduce deer and you significantly reduce risk,” said Sam R. Telford III, a professor at the Tufts Cummings School of Veterinary Medicine.
In Massachusetts, some communities — including Framingham, Sudbury, Andover, and Dover — allow bow-hunting on town property to reduce deer populations to prevent Lyme. But as the practice gains traction, so does controversy. A group of Weston residents this year unsuccessfully attempted to repeal a year-old bow-hunting program that killed 18 deer last year.
“The group against hunting is not just people who are deer lovers,’’ said Diane Anderson, co-founder of Weston Deer Friends. “There is a spectrum — people concerned about the safety of dogs and children; others who feel very strongly that town lands are for townspeople to enjoy. . . . Plus there was nothing showing it was going to work.”
Some scientists are on the opponents’ side, saying it is not clear that culling deer will reduce ticks, because adult ticks may find other hosts to latch on to for a needed meal of blood before they lay eggs.
“The only real evidence there is a relationship between deer numbers and Lyme disease risk took place on islands,’’ where there were no other large animal hosts for adult ticks, said Richard S. Ostfeld, disease ecologist at the Cary Institute of Ecosystem Studies in Millbrook, N.Y. Some research suggests more needs to be done to control mice, which often pass the Lyme bacteria to young ticks, perhaps by increasing populations of predators, such as fox.
Research also shows that deer herds need to get down to about 8 to 10 per square miles to have a significant effect on human disease — Martha’s Vineyard has 40 to 50 per square mile, according to a just completed census — and most towns’ programs have not met that goal. Even if they do, neighboring communities may not reduce herds, which cross town boundaries.
“It has to be a regional effort,” said Laurie Bent, Weston Conservation Commission chairwoman. An avid walker on town lands, she dresses in light-colored clothes, long pants, and a long-sleeve shirt — and she even bought a white standard poodle in part because ticks would be more visible on her pet. “This is a start,” she said of Weston’s bow-hunting program.
Mather is in the deer-culling camp, saying the evidence is overwhelming that it helps to limit disease spread. But he urges multiple approaches to prevention. He spearheaded development of tiny tubes filled with tick-repellent cotton balls that residents can leave in backyards. Mice take the balls back to their nests so ticks do not latch onto them to feed. There is also ongoing work by Telford and others to vaccinate mice, to keep them from infecting ticks with Lyme. And in New York, an experiment is testing contraceptive injections to reduce deer-herd growth.
Mather continues to find new ways to reach the public. Recently, he’s tried to buttress his case by gluing seed-sized deer ticks onto the surface of a poppy seed bagel.
“A lot of people say they will never eat a poppy seed bagel again,” Mather said. “But they get the message how small these ticks are. We are trying to get out a prevention message that sticks.”
Should we kill all the deer?
That was the question facing residents of Maine’s Monhegan Island in the mid-1990s. Lyme disease caused by deer tick bites afflicted 13 percent of the year-round inhabitants. The parasites often feed on deer before laying eggs, the argument went, so wipe out the herd and we might be rid of the ticks.
After fierce debate, islanders made the wrenching decision: Hire sharpshooters.
“Everyone was sort of fond of the deer . . . but we considered this an epidemic,” said Doug Boynton, a longtime resident. More than 100 deer were shot, and today, he said, “Lyme disease is virtually nil here.”
Few other communities have followed Monhegan’s example, however. Blame the Bambi effect, as well as doubts about whether herd culling can work in places where there are dramatically more deer and people. Most other efforts to keep ticks and people apart have also foundered, even as Lyme has emerged as the second most commonly reported infectious disease in New England.
This regional epidemic has yet to trigger a broad public health response on par with prevention blitzes aimed at some other pervasive maladies. That is partly because ticks are a devious foe. Vacation spots are often loath to publicize the threat for fear of scaring off business, and the public and politicians often do not perceive Lyme as a serious malady. The result is a lopsided spending gap between prevention efforts for tick- and mosquito-borne illnesses.
“Lyme disease in Massachusetts has been an epidemic for years. However, it has not received the attention that it deserves,’’ said Representative David P. Linsky, a Natick Democrat who spearheaded a special state commission on Lyme disease that released a report this year urging the state to combat the illness more aggressively.
Ticks have stealth on their side. Often as small as a pinhead, they don’t buzz in warning and their bite is painless. At home in our backyards, soccer fields, and hiking trails, they are far more challenging to eliminate than mosquitoes. And they are ubiquitous in the very places New Englanders flock in the summer — from mountain paths to stream-side camping grounds.
Even in winter, ticks can bite on warm days, and climate change is lengthening the seasons when ticks are most active.
Yet people often don’t take simple precautions. Constant tick vigilance can be wearying — and besides, it’s geeky to pull your socks over your pants.
“It’s frustrating — we haven’t hit upon the right message yet to reach a lot of people,’’ said Tom Mather, a University of Rhode Island professor who runs tickencounter.org, a prevention-based website. Mather has spent years trying to come up with innovative ways to get people to spray tick repellent on clothes or tuck their pants inside socks when going for hikes. He even tried, unsuccessfully, to get the Rhode Island legislature to introduce a lottery scratch ticket dotted with ticks to raise awareness.
If Lyme is caught early, most people recover quickly with antibiotics, but up to 25 percent of people report feeling unwell after treatment — sometimes for months or years. There is enormous controversy among some doctors and members of the publicabout why these patients are sick and how long symptoms can last. But there is no doubt that Lyme is a significant health threat. Untreated, the disease can cause a range of symptoms, from facial paralysis to arthritis and heart problems, to more common complaints of fatigue and headaches. Deer ticks can also transmit four other diseases to humans.
“One bite can really change your life,” said Mather, who rarely travels without a pair of pointy tick-plucking tweezers in his pants pocket. “It seems like prevention is such a hard sell … and it shouldn’t be.”
Stealthy bugs
Tick prevention has a big problem: Us. People are slow to adopt new habits, even when they protect us from harm. Think sunscreen. Or flossing. Or exercise.
It can seem a real bother to perform daily tick checks or follow the recommended long-pants dress code while in the garden or on a hike. Others are simply oblivious, lulled into a false sense of security because, unlike a mosquito’s buzz and bite, the tiny ticks are often imperceptible. It’s hard to remain vigilant about something you cannot see or feel.
Nowhere has that response been more apparent than on Cape Cod and the Islands, which long have had some of the highest rates of Lyme disease in the Northeast. Last year, state officials said the region had 438 confirmed or probable cases of Lyme disease — although cases statewide are believed to be five to 10 times greater than reported because so many patients go undiagnosed or do not fit reporting criteria.
One 1990s-era survey of ferry passengers to Martha’s Vineyard found that while 73 percent of people had a good understanding of Lyme disease, only 22 percent performed tick checks.
“Even for those of us who preach prevention, it can be hard,’’ said Brenda Boleyn, volunteer chairwoman of the Barnstable County Lyme/Tick-borne Diseases Task Force.
And a surprising number of Vineyard tourists are not even aware of the Lyme risk. A recent survey found that 63 percent of visitors were unaware that tick-borne illnesses are a health threat on the island.
Now, a number of local agencies are working to turn the tables on ticks and disease. The Martha’s Vineyard Boards of Health Tick-Borne Illness Initiative is working to reduce severe tick-borne illnesses 75 percent by 2015.
The initiative recently provided parents of every grade-school child — one of the highest-risk populations — a brochure and DVD on how to protect against tick-borne diseases. The group, armed with a $250,000 grant from Martha’s Vineyard Hospital, is focusing on bite prevention and early symptoms recognition and treatment.
The coalition has also surveyed pharmacies that dispensed antibiotics to treat Lyme to get a clearer picture of the disease’s prevalence.
“We want this to be data-driven and sustainable,’’ said Michael Loberg, a Tisbury Board of Health commissioner and a member of the coalition.
On the Cape, the five-year-old volunteer group Lyme Awareness of Cape Cod regularly blankets the region with pamphlets and holds awareness events. A federally funded four-year experiment has placed 42 deer feeding stations on the Cape and Islands, where the animals’ heads and necks — common hiding places for ticks — rub against a pesticide applicator as they get food. The project is in its final year before being evaluated to see whether it should continue or be expanded, said Larry Dapsis, Cape Cod Cooperative Extension entomologist and deer tick project coordinator.
Dapsis, meanwhile, is intent on increasing the number of garden stores that carry permethrin, an effective tick repellent that can be sprayed on clothing, from two to 15. The chemical is not meant to be sprayed on skin.
Store managers “just need a little tick boot camp, a little education,’’ he said.
These efforts, and others across the state, often rely on shoestring funding and volunteers: Unlike the more than $10 million spent statewide on prevention of mosquito-borne diseases, the state allocates only a few tens of thousands of dollars for tick-disease education. Last year, there were 33 human cases of West Nile virus and seven cases of Eastern equine encephalitis reported in Massachusetts; both are spread by mosquitoes. There were more than 5,000 confirmed and probable cases of Lyme.
In the State House
There are signs that Lyme and ticks may soon get more attention. The Lyme special commission’s report called for the state to launch a range of prevention efforts, from aggressive public education to clearing brush from trails to exploring expanded bow hunting for deer in more parts of the state. The report called for an increase in state funding, but the Legislature and governor so far have not acted on the suggestions.
Still, a hearing is expected in coming months for a bill reintroduced in the State House this year by Representative Carolyn C. Dykema, a Holliston Democrat, that would expand the authority of the state’s mosquito control districts to include controlling the tick population.
Other headway is being made by the federal government. The Centers for Disease Control and Prevention and the US Environmental Protection Agency have convened meetings in recent years to discuss possible community-wide tick control measures that might be effective.
Disease-carrying mosquitoes are readily killed by spraying because they breed in standing water and wetlands, “but ticks are everywhere,’’ said Kirby Stafford III of the Connecticut Agricultural Experiment Station, who has written extensively on tick prevention. Ticks live under leaf litter and brush. “It’s not easy to reach them,” he said.
Yet federal officials say it is clear that more coordinated action by public health agencies is needed.
“For some reason, tick control has fallen largely on the shoulders of individual homeowners,’’ said C. Ben Beard, chief of the Bacterial Diseases Branch of the CDC. “It needs to be thought of as a community-based responsibility.”
Bambi effect
Deer ticks got their name because so many feed on the serene mammals. Deer populations have steadily increased over the last century in the Northeast, and a Rhode Island study by Mather found that five engorged ticks, each able to lay 2,500 or more eggs, can drop off a single deer every day during October and November.
“Reduce deer and you significantly reduce risk,” said Sam R. Telford III, a professor at the Tufts Cummings School of Veterinary Medicine.
In Massachusetts, some communities — including Framingham, Sudbury, Andover, and Dover — allow bow-hunting on town property to reduce deer populations to prevent Lyme. But as the practice gains traction, so does controversy. A group of Weston residents this year unsuccessfully attempted to repeal a year-old bow-hunting program that killed 18 deer last year.
“The group against hunting is not just people who are deer lovers,’’ said Diane Anderson, co-founder of Weston Deer Friends. “There is a spectrum — people concerned about the safety of dogs and children; others who feel very strongly that town lands are for townspeople to enjoy. . . . Plus there was nothing showing it was going to work.”
Some scientists are on the opponents’ side, saying it is not clear that culling deer will reduce ticks, because adult ticks may find other hosts to latch on to for a needed meal of blood before they lay eggs.
“The only real evidence there is a relationship between deer numbers and Lyme disease risk took place on islands,’’ where there were no other large animal hosts for adult ticks, said Richard S. Ostfeld, disease ecologist at the Cary Institute of Ecosystem Studies in Millbrook, N.Y. Some research suggests more needs to be done to control mice, which often pass the Lyme bacteria to young ticks, perhaps by increasing populations of predators, such as fox.
Research also shows that deer herds need to get down to about 8 to 10 per square miles to have a significant effect on human disease — Martha’s Vineyard has 40 to 50 per square mile, according to a just completed census — and most towns’ programs have not met that goal. Even if they do, neighboring communities may not reduce herds, which cross town boundaries.
“It has to be a regional effort,” said Laurie Bent, Weston Conservation Commission chairwoman. An avid walker on town lands, she dresses in light-colored clothes, long pants, and a long-sleeve shirt — and she even bought a white standard poodle in part because ticks would be more visible on her pet. “This is a start,” she said of Weston’s bow-hunting program.
Mather is in the deer-culling camp, saying the evidence is overwhelming that it helps to limit disease spread. But he urges multiple approaches to prevention. He spearheaded development of tiny tubes filled with tick-repellent cotton balls that residents can leave in backyards. Mice take the balls back to their nests so ticks do not latch onto them to feed. There is also ongoing work by Telford and others to vaccinate mice, to keep them from infecting ticks with Lyme. And in New York, an experiment is testing contraceptive injections to reduce deer-herd growth.
Mather continues to find new ways to reach the public. Recently, he’s tried to buttress his case by gluing seed-sized deer ticks onto the surface of a poppy seed bagel.
“A lot of people say they will never eat a poppy seed bagel again,” Mather said. “But they get the message how small these ticks are. We are trying to get out a prevention message that sticks.”
Third in an occasional series.
Brandi Dean wanted to slink home. Her husband had rushed her to a Boston emergency room for severe vertigo, confusion, and a bizarre weakness on her right side, but neurological and other tests had yielded nothing. Maybe, a doctor suggested gently, it was a panic attack.
“I was so embarrassed,” said the soft-spoken Dean, who left Beth Israel Deaconess Medical Center wondering whether the stresses of being a mother of two young sons had caused her to become so sick. She was still reeling from the experience a week later when her phone rang. One of her lab tests had come back positive — for Lyme disease.
Doctors put the 36-year-old South End woman on three weeks of antibiotics and Dean immediately began to feel well. But when the medication ended, so did her better health. Abruptly, Dean was catapulted into one of the most contentious debates in medicine today: Why do up to 25 percent of people treated for Lyme disease report lingering symptoms, lasting from days to years?
“This is a huge question,” said C. Ben Beard, chief of the Bacterial Diseases Branch of the US Centers for Disease Control and Prevention. “We really need to understand what is going on.”
Many Lyme sufferers and activists, and some doctors are convinced that the bacteria that cause the disease can, especially if not caught early, evade antibiotics and the body’s immune system by burrowing into joints, the nervous system, and other tissue to wreak sustained havoc.
Most infectious disease specialists, however, say there is a lack of convincing evidence for this persistent infection and that a month or less of antibiotics usually knocks the disease from the body. They suggest other causes: another illness or reinfection through a second tick bite. Or patients may have a syndrome triggered by Lyme that causes long-term fatigue or pain.
Underlying the emotional impasse is this simple fact: Lyme bacteria have rarely been found in patients after a cycle of antibiotics. Lyme tests look not for the bacteria but for antibodies, which the immune system makes to attack the microbe. Now researchers are looking more intensely for the bacterium itself in people, hoping to resolve whether the organism, or some remnant of it, makes some people sick.
No one disputes that many people remain ill after they should have been free of symptoms. A conservative estimate suggests there could be more than 5,000 people in Massachusetts alone experiencing these lingering problems each year.
That number includes only people who get positive or probable test results using CDC diagnostic criteria; Lyme activists say there are thousands more people who are missed because the government’s criteria are too narrow.
Many patients say they find relief by taking antibiotics for months or even years, which they see as further evidence they have a persistent bacterial illness. The medical establishment frowns upon the practice, however, because it says there is no proof long-term therapy helps, and it can harm patients and society, by fostering the emergence of antibiotic-resistant pathogens. Many insurers, in turn, refuse to pay for extended dosages of the drugs.
Earlier this year, Dean and her husband made a difficult decision to spend $50,000 for an eight-month course of intravenous antibiotics.
“I just want to be better,’’ said Dean, a former Coast Guard petty officer. As her sons Finn, 2, and Rylan, 4, played nearby, she shook her head. Active her entire life, Dean was reduced to lying on a couch for weeks on end when she became ill, and she’s upset that her symptoms were dismissed as being all in her head.
“Someone comes to a doctor really sick and then are sent to a psychologist; I don’t understand that,’’ said Dean, who cofounded a Boston Lyme support group and blogs about her experience.
“How does that really help them?”
A wily foe
The nemesis Dean blames for her illness has a long history of making people miserable.
The Lyme germ is part of a group of slender bacteria called spirochetes that are coiled like a twisted telephone cord. Filaments attached at both ends of the cell spiral like a corkscrew, propelling the organism.
Not all spirochetes cause disease — some live in our mouths, for example — but those that do have caused widespread suffering: Syphilis, a sexually transmitted infection with a range of symptoms, and relapsing fever, which causes cycles of high fever, are both caused by types of spirochetes.
Scientists who first observed spirochetes under a microscope thought they were animals because they behaved so differently than other bacteria — curling up and springing forward to change direction — according to Dr. Alan Barbour, a longtime Lyme expert at the University of California Irvine.
“I find them endlessly fascinating,’’ he said.
No one knew exactly what pathogen ticks were spreading to cause a mysterious arthritis-like disease affecting children in and near Lyme, Conn., in the 1970s. But In 1982, Willy Burgdorfer of Rocky Mountain Laboratories in Montana identified the spirochete in ticks, and the organism was named in his honor: Borrelia burgdorferi.
It’s hard not to admire the Lyme bacteria’s survival instincts. It has adapted to live in numerous animal hosts, from small rodents to birds. In humans, once the spirochete is deposited in the skin by a tick, it can motor off to lodge in joints, the nervous system, heart, and other places. It changes the proteins on its surface to disguise itself from the immune system.
Some Lyme patients and some doctors view the spirochete as having the same capabilities as tuberculosis, which can lie latent in the body and take long courses of antibiotics to eradicate. But TB is a different type of bacteria, specialists say, and there is no evidence yet that the Lyme spirochete behaves the same way. In fact, spirochetes have been shown to be quickly killed off by antibiotics.
Yet some researchers are investigating if some spirochetes can hide from antibiotics. One University of New Haven-led study published last year showed that in a test tube, concentrations of Lyme bacteria can group together, and the study’s lead author has suggested the structure might allow some cells to resist antibiotics.
The 13th annual international conference on Lyme and other tick-borne diseases is being held in Boston this week, and the scientists attending are scheduled to discuss research into why some treated Lyme patients remain sick.
“More and more, people are willing to look at (this) with an open mind,” Barbour said.
A bruise, a brush off
In October 2010, Dean twisted to look over her shoulder at a mirror, trying to get a better glimpse of a bug bite on her left buttock. Five months pregnant with her second son, she saw a red dot with an ugly bruise ringing it. It disappeared after about a week.
Dean didn’t recognize the telltale bull’s-eye rash of Lyme disease, and didn’t think of the bite again during the pregnancy — even when she began getting heart palpitations, panic attacks, and a tingling sensation in her face and shoulders. Doctors chalked it up to a tough pregnancy, but Dean was perplexed. With the exception of getting mono as a teen, she had hardly ever been sick.
Growing up in Upstate New York with her two brothers and sister, Dean roamed the woods, played baseball and volleyball, and loved to dance. Later — after burning out on 70-hour workweeks as a hotel general manager — she signed up for the Coast Guard and worked in search and rescue. She left to get a business degree at Boston University, then went to work at a private equity firm, where she met her husband, Chris.
Yoga, running, and hiking were big parts of her life — friends remember Dean running a road race shortly after Rylan was born. But after Finn’s birth in February 2011, she didn’t bounce back. She became so dizzy she was afraid she would drop Finn or pass out when she drove. Dean began losing hearing for a few seconds at a time and one morning was unable to open her right eye for several harrowing seconds. Hours later, her husband rushed her to the hospital.
“She kept getting thinner and thinner,’’ said Daria Miano, a neighbor and friend. “All of her friends worried about her.”
To Dean, her Lyme diagnosis made sense, but the day after finishing the antibiotics she felt awful, suffering exhaustion, vertigo, and a constant buzzing in her head. Her primary care doctor said he believed the Lyme test result was a false positive and suggested she take an antianxiety drug, according to medical records Dean provided to the Globe.
Soon after, she went back to the doctor’s with her husband and saw a different doctor.
Chris became outraged when this physician also said his wife’s problem was anxiety — something was clearly physically wrong with her, and the doctor just kept saying it wasn’t Lyme.
“It was blame the patient,” Chris said. The doctor “was not in discovery mode.”
Three separate tests, all done in accordance with CDC criteria, came up positive for Lyme, according to her records. But because tests sometimes come up positive after the infection is gone, doctors may doubt test results unless accompanied by a clear clinical sign, such as the bull’s-eye rash.
“I thought I was going crazy because no one believed I was sick,” Dean said. Soon, she began mining the Web for Lyme information. About two months after her first ER visit, Dean called a different doctor, one known to patients as “Lyme literate” because, contrary to many in the medical establishment, she believed that Lyme caused prolonged symptoms.
A signal to a spirochete
Dr. Linden Hu’s wife at first didn’t want to sleep in the same bed with him after he came home with several dozen deer ticks feeding on his forearm.
Hu, a Lyme researcher at Tufts Medical Center, had become intrigued by a series of studies in mice, dogs, and monkeys that were infected with Lyme and then treated with antibiotics. Uninfected ticks placed on some animals were able to find what doctors long thought weren’t there: the bacteria that cause Lyme disease.
Called xenodiagnosis, the novel practice tries to diagnose a disease using the same animals that transmit it. Since ticks have evolved to pick up the Lyme bacteria from animals in the wild using chemical signals in their saliva, the reasoning goes that uninfected, lab-raised ticks should also be able to “find” the bacterium in treated animals if it is there — even if a blood test can’t detect it.
In animal studies, the Lyme spirochete pulled from the animals could not be grown in the lab. But in the mouse study, the ticks were able to transmit the live spirochete to other mice.
“The bottom line is they are surviving,’’ said Dr. Stephen Barthold, distinguished emeritus professor of veterinary pathology at University of California Davis, who conducted the mouse studies. “The real question is, is there significance to that?”
Hu does not know the answer yet, but he figures a good place to start is to see whether the spirochetes can be recovered from humans the way they are from animals. He is pursuing the work with Dr. Adriana Marques of the National Institutes of Health and Yale University.
They, along with other scientists, are searching for the reasons that symptoms persist in some treated Lyme patients. Dr. Linda K. Bockenstedt, a professor at Yale School of Medicine, has found traces of proteins from the Lyme spirochete within joints and adjacent to cartilage after Lyme-infected mice were treated with antibiotics. She and her colleagues suggest that these leftover proteins could be causing an immune reaction that helps keep joints inflamed after the bacteria have been killed.
Much of the Lyme research is in animals, but those findings must be validated in humans. Hu spent close to four years getting federal approval to place ticks on volunteers. There was opposition from some Lyme activists who worry the ticks could be infected with an unknown pathogen not yet discovered. Hu says there is a chance of passing a yet undiscovered pathogen but points out that the ticks are raised in the laboratory and tested for all known pathogens.
Hu placed the ticks on his arm because he didn’t think it fair to put the 39 volunteers through something he had not done himself. About 30 ticks are placed on each person, usually close to where they remember they were first bitten, to feed for about five days. The ticks are then removed and examined to see whether spirochetes can be found.
“Xenodiagnosis has an ick factor,’’ acknowledges Hu, who declined to discuss the findings until his work is published in a scientific journal.
Even if the ticks succeed in pulling spirochetes from humans, there is still the next big question to answer. “Is positivity related to symptoms?” he asked.
A struggle to get well
The first time Dean went to see a “Lyme literate” doctor near Boston, in August 2011, the woman, Dean recalled, sat with her for 90 minutes and declared, “I know you are sick and I am going to make you better.”
She prescribed long-term oral antibiotics. Dean’s progress was slow — improvement was measured by staying up past 8 p.m. and being able to walk a block with her sons. After a year, she was able to resume yoga. But she was frustrated; she didn’t want to be on antibiotics at all.
By April of this year, more than two years after the bug bite, she and her husband decided to have a port inserted in her chest to get intravenous antibiotic treatments for eight months, at a cost of $50,000, in hopes of knocking the disease out of her system for good. The couple is contemplating having a third child and Dean couldn’t even think about that possibility until she was really better.
“I wanted to get to a point where I would no longer need to take antibiotics to feel well,” Dean said.
The CDC’s Beard says four clinical trials in humans failed “to show convincingly that patients benefit from long-term antibiotic therapy.” But many patients and Lyme activists, and some doctors say more research needs to be done to understand why so many patients feel better when they take them.
After Dean had the port inserted, and before she began taking antibiotics, her blood pressure dropped to dangerously low levels and she was rushed to an emergency room. She had the port removed.
Now, she faces a dilemma: On oral antibiotics, she is almost well. Off them, she is very sick. She stopped taking one antibiotic two weeks ago and the dizziness, buzzing head, and swollen lymph nodes immediately returned.
The couple is moving to the suburbs in the fall, and Dean says she will try again. She is unsure of the future, still unsure about a third child.
“I have to wait and see what happens,’’ she said last week.
Brandi Dean wanted to slink home. Her husband had rushed her to a Boston emergency room for severe vertigo, confusion, and a bizarre weakness on her right side, but neurological and other tests had yielded nothing. Maybe, a doctor suggested gently, it was a panic attack.
“I was so embarrassed,” said the soft-spoken Dean, who left Beth Israel Deaconess Medical Center wondering whether the stresses of being a mother of two young sons had caused her to become so sick. She was still reeling from the experience a week later when her phone rang. One of her lab tests had come back positive — for Lyme disease.
Doctors put the 36-year-old South End woman on three weeks of antibiotics and Dean immediately began to feel well. But when the medication ended, so did her better health. Abruptly, Dean was catapulted into one of the most contentious debates in medicine today: Why do up to 25 percent of people treated for Lyme disease report lingering symptoms, lasting from days to years?
“This is a huge question,” said C. Ben Beard, chief of the Bacterial Diseases Branch of the US Centers for Disease Control and Prevention. “We really need to understand what is going on.”
Many Lyme sufferers and activists, and some doctors are convinced that the bacteria that cause the disease can, especially if not caught early, evade antibiotics and the body’s immune system by burrowing into joints, the nervous system, and other tissue to wreak sustained havoc.
Most infectious disease specialists, however, say there is a lack of convincing evidence for this persistent infection and that a month or less of antibiotics usually knocks the disease from the body. They suggest other causes: another illness or reinfection through a second tick bite. Or patients may have a syndrome triggered by Lyme that causes long-term fatigue or pain.
Underlying the emotional impasse is this simple fact: Lyme bacteria have rarely been found in patients after a cycle of antibiotics. Lyme tests look not for the bacteria but for antibodies, which the immune system makes to attack the microbe. Now researchers are looking more intensely for the bacterium itself in people, hoping to resolve whether the organism, or some remnant of it, makes some people sick.
No one disputes that many people remain ill after they should have been free of symptoms. A conservative estimate suggests there could be more than 5,000 people in Massachusetts alone experiencing these lingering problems each year.
That number includes only people who get positive or probable test results using CDC diagnostic criteria; Lyme activists say there are thousands more people who are missed because the government’s criteria are too narrow.
Many patients say they find relief by taking antibiotics for months or even years, which they see as further evidence they have a persistent bacterial illness. The medical establishment frowns upon the practice, however, because it says there is no proof long-term therapy helps, and it can harm patients and society, by fostering the emergence of antibiotic-resistant pathogens. Many insurers, in turn, refuse to pay for extended dosages of the drugs.
Earlier this year, Dean and her husband made a difficult decision to spend $50,000 for an eight-month course of intravenous antibiotics.
“I just want to be better,’’ said Dean, a former Coast Guard petty officer. As her sons Finn, 2, and Rylan, 4, played nearby, she shook her head. Active her entire life, Dean was reduced to lying on a couch for weeks on end when she became ill, and she’s upset that her symptoms were dismissed as being all in her head.
“Someone comes to a doctor really sick and then are sent to a psychologist; I don’t understand that,’’ said Dean, who cofounded a Boston Lyme support group and blogs about her experience.
“How does that really help them?”
A wily foe
The nemesis Dean blames for her illness has a long history of making people miserable.
The Lyme germ is part of a group of slender bacteria called spirochetes that are coiled like a twisted telephone cord. Filaments attached at both ends of the cell spiral like a corkscrew, propelling the organism.
Not all spirochetes cause disease — some live in our mouths, for example — but those that do have caused widespread suffering: Syphilis, a sexually transmitted infection with a range of symptoms, and relapsing fever, which causes cycles of high fever, are both caused by types of spirochetes.
Scientists who first observed spirochetes under a microscope thought they were animals because they behaved so differently than other bacteria — curling up and springing forward to change direction — according to Dr. Alan Barbour, a longtime Lyme expert at the University of California Irvine.
“I find them endlessly fascinating,’’ he said.
No one knew exactly what pathogen ticks were spreading to cause a mysterious arthritis-like disease affecting children in and near Lyme, Conn., in the 1970s. But In 1982, Willy Burgdorfer of Rocky Mountain Laboratories in Montana identified the spirochete in ticks, and the organism was named in his honor: Borrelia burgdorferi.
It’s hard not to admire the Lyme bacteria’s survival instincts. It has adapted to live in numerous animal hosts, from small rodents to birds. In humans, once the spirochete is deposited in the skin by a tick, it can motor off to lodge in joints, the nervous system, heart, and other places. It changes the proteins on its surface to disguise itself from the immune system.
Some Lyme patients and some doctors view the spirochete as having the same capabilities as tuberculosis, which can lie latent in the body and take long courses of antibiotics to eradicate. But TB is a different type of bacteria, specialists say, and there is no evidence yet that the Lyme spirochete behaves the same way. In fact, spirochetes have been shown to be quickly killed off by antibiotics.
Yet some researchers are investigating if some spirochetes can hide from antibiotics. One University of New Haven-led study published last year showed that in a test tube, concentrations of Lyme bacteria can group together, and the study’s lead author has suggested the structure might allow some cells to resist antibiotics.
The 13th annual international conference on Lyme and other tick-borne diseases is being held in Boston this week, and the scientists attending are scheduled to discuss research into why some treated Lyme patients remain sick.
“More and more, people are willing to look at (this) with an open mind,” Barbour said.
A bruise, a brush off
In October 2010, Dean twisted to look over her shoulder at a mirror, trying to get a better glimpse of a bug bite on her left buttock. Five months pregnant with her second son, she saw a red dot with an ugly bruise ringing it. It disappeared after about a week.
Dean didn’t recognize the telltale bull’s-eye rash of Lyme disease, and didn’t think of the bite again during the pregnancy — even when she began getting heart palpitations, panic attacks, and a tingling sensation in her face and shoulders. Doctors chalked it up to a tough pregnancy, but Dean was perplexed. With the exception of getting mono as a teen, she had hardly ever been sick.
Growing up in Upstate New York with her two brothers and sister, Dean roamed the woods, played baseball and volleyball, and loved to dance. Later — after burning out on 70-hour workweeks as a hotel general manager — she signed up for the Coast Guard and worked in search and rescue. She left to get a business degree at Boston University, then went to work at a private equity firm, where she met her husband, Chris.
Yoga, running, and hiking were big parts of her life — friends remember Dean running a road race shortly after Rylan was born. But after Finn’s birth in February 2011, she didn’t bounce back. She became so dizzy she was afraid she would drop Finn or pass out when she drove. Dean began losing hearing for a few seconds at a time and one morning was unable to open her right eye for several harrowing seconds. Hours later, her husband rushed her to the hospital.
“She kept getting thinner and thinner,’’ said Daria Miano, a neighbor and friend. “All of her friends worried about her.”
To Dean, her Lyme diagnosis made sense, but the day after finishing the antibiotics she felt awful, suffering exhaustion, vertigo, and a constant buzzing in her head. Her primary care doctor said he believed the Lyme test result was a false positive and suggested she take an antianxiety drug, according to medical records Dean provided to the Globe.
Soon after, she went back to the doctor’s with her husband and saw a different doctor.
Chris became outraged when this physician also said his wife’s problem was anxiety — something was clearly physically wrong with her, and the doctor just kept saying it wasn’t Lyme.
“It was blame the patient,” Chris said. The doctor “was not in discovery mode.”
Three separate tests, all done in accordance with CDC criteria, came up positive for Lyme, according to her records. But because tests sometimes come up positive after the infection is gone, doctors may doubt test results unless accompanied by a clear clinical sign, such as the bull’s-eye rash.
“I thought I was going crazy because no one believed I was sick,” Dean said. Soon, she began mining the Web for Lyme information. About two months after her first ER visit, Dean called a different doctor, one known to patients as “Lyme literate” because, contrary to many in the medical establishment, she believed that Lyme caused prolonged symptoms.
A signal to a spirochete
Dr. Linden Hu’s wife at first didn’t want to sleep in the same bed with him after he came home with several dozen deer ticks feeding on his forearm.
Hu, a Lyme researcher at Tufts Medical Center, had become intrigued by a series of studies in mice, dogs, and monkeys that were infected with Lyme and then treated with antibiotics. Uninfected ticks placed on some animals were able to find what doctors long thought weren’t there: the bacteria that cause Lyme disease.
Called xenodiagnosis, the novel practice tries to diagnose a disease using the same animals that transmit it. Since ticks have evolved to pick up the Lyme bacteria from animals in the wild using chemical signals in their saliva, the reasoning goes that uninfected, lab-raised ticks should also be able to “find” the bacterium in treated animals if it is there — even if a blood test can’t detect it.
In animal studies, the Lyme spirochete pulled from the animals could not be grown in the lab. But in the mouse study, the ticks were able to transmit the live spirochete to other mice.
“The bottom line is they are surviving,’’ said Dr. Stephen Barthold, distinguished emeritus professor of veterinary pathology at University of California Davis, who conducted the mouse studies. “The real question is, is there significance to that?”
Hu does not know the answer yet, but he figures a good place to start is to see whether the spirochetes can be recovered from humans the way they are from animals. He is pursuing the work with Dr. Adriana Marques of the National Institutes of Health and Yale University.
They, along with other scientists, are searching for the reasons that symptoms persist in some treated Lyme patients. Dr. Linda K. Bockenstedt, a professor at Yale School of Medicine, has found traces of proteins from the Lyme spirochete within joints and adjacent to cartilage after Lyme-infected mice were treated with antibiotics. She and her colleagues suggest that these leftover proteins could be causing an immune reaction that helps keep joints inflamed after the bacteria have been killed.
Much of the Lyme research is in animals, but those findings must be validated in humans. Hu spent close to four years getting federal approval to place ticks on volunteers. There was opposition from some Lyme activists who worry the ticks could be infected with an unknown pathogen not yet discovered. Hu says there is a chance of passing a yet undiscovered pathogen but points out that the ticks are raised in the laboratory and tested for all known pathogens.
Hu placed the ticks on his arm because he didn’t think it fair to put the 39 volunteers through something he had not done himself. About 30 ticks are placed on each person, usually close to where they remember they were first bitten, to feed for about five days. The ticks are then removed and examined to see whether spirochetes can be found.
“Xenodiagnosis has an ick factor,’’ acknowledges Hu, who declined to discuss the findings until his work is published in a scientific journal.
Even if the ticks succeed in pulling spirochetes from humans, there is still the next big question to answer. “Is positivity related to symptoms?” he asked.
A struggle to get well
The first time Dean went to see a “Lyme literate” doctor near Boston, in August 2011, the woman, Dean recalled, sat with her for 90 minutes and declared, “I know you are sick and I am going to make you better.”
She prescribed long-term oral antibiotics. Dean’s progress was slow — improvement was measured by staying up past 8 p.m. and being able to walk a block with her sons. After a year, she was able to resume yoga. But she was frustrated; she didn’t want to be on antibiotics at all.
By April of this year, more than two years after the bug bite, she and her husband decided to have a port inserted in her chest to get intravenous antibiotic treatments for eight months, at a cost of $50,000, in hopes of knocking the disease out of her system for good. The couple is contemplating having a third child and Dean couldn’t even think about that possibility until she was really better.
“I wanted to get to a point where I would no longer need to take antibiotics to feel well,” Dean said.
The CDC’s Beard says four clinical trials in humans failed “to show convincingly that patients benefit from long-term antibiotic therapy.” But many patients and Lyme activists, and some doctors say more research needs to be done to understand why so many patients feel better when they take them.
After Dean had the port inserted, and before she began taking antibiotics, her blood pressure dropped to dangerously low levels and she was rushed to an emergency room. She had the port removed.
Now, she faces a dilemma: On oral antibiotics, she is almost well. Off them, she is very sick. She stopped taking one antibiotic two weeks ago and the dizziness, buzzing head, and swollen lymph nodes immediately returned.
The couple is moving to the suburbs in the fall, and Dean says she will try again. She is unsure of the future, still unsure about a third child.
“I have to wait and see what happens,’’ she said last week.
If you spend time outdoors then you should use insect repellant and always check your body for ticks.......
