My Friend Leslie in the News
Lyme disease keeps climbing
BY JEREMY OLSON
Pioneer Press
Public health officials Tuesday warned people in Minnesota and Wisconsin to be mindful of deer ticks in the coming months because each of the states had record cases of Lyme disease last year and conditions are favorable for a continuing trend.
Last year was the first in Minnesota's history in which more than 1,000 people were diagnosed with the disease, the state Health Department reported Tuesday. Wisconsin posted a record number last year, too, with more than 1,100 new cases.
Health officials worry that people have become apathetic to the disease and aren't using proper caution. However, some people with the disease complain of faulty tests and uninformed medical professionals.
Annual case numbers have been rising for the past decade, although they dropped sharply in 2003. It appears that dry weather hampered the tick populations in Minnesota and Wisconsin that year.
Leslie Johnson's message of prevention comes from experience. The 30-year-old from St. Louis Park has been on disability leave from her job since March while taking antibiotics intravenously for advanced Lyme disease.
Before treatment, she experienced heart palpitations and a bizarre mix of symptoms that included joint pain and tingling in her fingertips. She criticized some of the existing testing methods, and some doctors' lack of awareness, for allowing the disease to go undiagnosed for years. She believes she might have been infected as a child.
It appears that she passed the disease during pregnancy to her son, a 2-year-old who suffered a variety of health problems and took antibiotics after he was diagnosed. That could have been prevented if she had taken antibiotics while pregnant, and it is one reason Johnson is forming a support group and hoping to encourage better detection and treatment of the disease.
"I'm going to focus any energy I have, beyond my family," she said, "to help other people with it."
Family wins long fight with Lyme disease
Published in the Asbury Park Press 05/11/05By DENNIS THOMPSON
HEALTH
Katie Bovers' whole family felt lousy.
She and her husband were constantly achy and tired. Their 6-year-old son had an odd rash. And their two younger children seemed cranky and irritable.
"I started having achy joints and really debilitating headaches," said Bovers, 46, who lives in Bedford Hills, N.Y, a beautiful, woods-filled community about 70 miles north of New York City. "I thought they were migraines, they were so bad."
They didn't know it yet, but all of the Bovers were struggling with Lyme disease. From those first aches and pains in 1995, it would take five years of various treatments before they felt well again.
May is Lyme Disease Awareness Month, timed to coincide with the arrival of warm weather and people flocking outdoors to enjoy the fresh air of spring. And doctors and medical activists are using this time to heighten awareness of the disease, educate Americans about symptoms of infection, and explain what treatments work best.
Lyme disease is caused by the bacterium Borrelia burgdorferi, according to the U.S. Centers for Disease Control and Prevention. These bacteria are transmitted to humans through the bite of infected deer ticks, and caused 23,763 infections in the United States in 2002.
Lyme disease was discovered in 1977 when arthritis was observed in children in Lyme, Conn., according to the CDC.
Bovers had suspected her 6-year-old might have Lyme disease, because the family lived in a rural, insect-ridden area, so she took all her children to the doctor for testing.
"I wanted them all checked because where one was, all of them were," she said.
Her pediatrician didn't think the boy's rash was caused by Lyme disease, but agreed to treat the kids with three weeks of antibiotics.
"I didn't test myself," she said. "I thought I was stressed by the kids not feeling well."
For the next three years, the family continued to suffer from ill health. "The kids were headachy and lethargic. Pasty white. They really didn't look well," Bovers said.
Finally, a friend suggested that she have the family retested for Lyme disease. All five Bovers had blood work drawn.
"We were all in a bad way with the Lyme," she said.
Her husband, whose Lyme levels were the worst, immediately went on intravenous antibiotics. After three months, his symptoms disappeared.
The rest of the family was given oral antibiotics, but to little effect. "We really didn't get better for a while," she said.
The doctor switched her children to injectable antibiotics in 2000. Each child received a shot every two weeks for about five months, Bovers said.
"There were some ups then," she said. "A couple of days after their shots, you could really tell the difference, but then they'd go back down."
About the same time, the doctor put Bovers on intravenous antibiotics for six months. The drugs drained her but eventually cured her.
Several months after the shots had ended, the Bovers decided to put their children on intravenous antibiotics as well. They received treatment for 4 1/2 years before they were judged free of the disease.
"The overall theme of all this is it took five solid years for all of us to get where we are now — medicine-free," Bovers said.
In 2002, the latest year for available statistics, 95 percent of Lyme disease cases were from the states of Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island and Wisconsin.
To protect yourself against Lyme disease, doctors recommend, first, that you avoid places likely to be infested with ticks, particularly in the spring and summer. Deer ticks favor a moist, shaded environment, especially areas with leaf litter and low-lying vegetation in wooded, brushy or overgrown grassy locales, according to the CDC.
People who do venture into tick habitats should wear light-colored clothing to help spot ticks. Wearing long-sleeved shirts and tucking pants into socks or boot tops can help keep ticks from reaching your skin.
Tuesday, May 10, 2005
More About STARI
I have been looking for more information about "STARI", which is the name for lyme that comes from the lone star tick, instead of the deer tick. This is a map that shows the distribution of the lone star tick in the U.S. For more info, click on the map to go to the CDC site. I will put up more about STARI as I find it.
Ticks Spread Disease in Georgia - STARI?
Karen SchradinWSAV News 3
Tuesday, May 10, 2005
They're found up and down the East Coast, most commonly in the South. Lone Star Ticks are mistakenly thought to be less dangerous than Deer Ticks, which carry and transmit Lyme disease.
Health officials now know, Lone Star Ticks carry something just as dangerous, it's called STARI. That stands for Southern Tick Associated Rash Illness.
"Its the southern equivalent of Lyme disease. It presents itself with the same symptoms as Lyme disease. The bullseye rash, flu like symptoms like fever, malaise, general tiredness, muscle aches, joint pain, and sometimes when it progresses, they could have facial paralysis or chronic arthritis." says Epidemiologist Cristina Pasa.
Record 1,023 cases of Lyme disease in Minnesota
Associated Press - May 10, 2005The cases of Lyme disease in Minnesota reached a record high last year, with 1,023 cases reported, the Minnesota Department of Health announced Monday.
The previous record of 867 Lyme disease cases was set in 2002.
Lyme disease is spread by deer ticks. It is often identified by an expanding "bulls-eye''-like rash that develops after a tick bite. Other symptoms include fatigue, fever, muscle aches and joint pain.
Experts say people can lower their risk of getting the disease by using insect repellent and by promptly removing ticks from the body.
If untreated, the disease can cause joint swelling and brain inflammation.
Woman's persistence pays off: Lyme disease finally diagnosed
The Arizona Republic - May. 10, 2005How she copes with Lyme disease
NAME: Lisa Katz.
AGE: 44.
HOME: Scottsdale.
JOB: audiologist, currently on disability.
THE ISSUE: Katz has struggled with complications of Lyme disease, a tick-borne illness, for several years. If discovered and treated early with antibiotics, Lyme disease is curable. One early symptom of the disease is a bull's-eye-shaped rash around the tick-bite site, but not everyone has this. That's followed a few weeks later by joint pain. If not treated early, the disease can cause arthritis, heart problems and neurological damage. Katz isn't sure when she got the disease, but remembers a tick bite followed by a fever in 1989. After that, she experienced fatigue, headaches and joint pain, and went from doctor to doctor for years. "I was getting sicker and sicker, and part of my face was drooping. They thought I had meningitis." A Lyme disease test came back positive, but her doctor didn't believe she had it. Katz saw neurologists, rheumatologists and infectious-disease doctors, finally traveling to Lyme disease specialists in California and New York. She had intravenous antibiotics, penicillin shots and oral antibiotics. In 1999, she blacked out at work, and 2 1/2 years ago, she had to go on disability because of dizziness. She still has fatigue, short-term memory problems and neuropathy (pain in the extremities).
THE MOTIVATION: Katz's journey from doctor to doctor was frustrating. "It was hard to go from working all the time to doing nothing. I didn't want anybody to go through what I went through."
THE CHANGE: Two years ago, she started the Arizona Lyme Disease Association, with an online support group, ArizonaLyme, which has 125 members as well as a Scottsdale group that meets monthly to share information and provide emotional support. "It's probably too late for me to be cured, but I want to prevent other people from ending up like this," says Katz, who takes supplements to boost her immunity and attends physical therapy to manage her symptoms. "Yoga helps with the stress."
THE GAIN: The therapy has helped her to stay mobile. "Otherwise I would be in bed all the time," she says. And the support group has been rewarding. "Even if I help one person get to the right doctor or help them, it's worth it."
KATZ'S TIPS: "Part of the problem is that the Lyme disease tests are unreliable. And what's happening in Arizona is that people won't think to test for it." The disease is much less common here than in the Northeast, where it originated. Nineteen cases were reported to the Maricopa County Department of Public Health in 2004. Even when tests confirm Lyme disease, there is no gold standard for treatment, with some doctors relying on short-term antibiotics and others using longer-term treatment. "People with complicated neurological symptoms should be treated for Lyme disease with a battery of tests," Katz says. She also recommends finding a doctor who is "Lyme-literate." For information on the support group, contact Katz at ArizonaLyme@aol.com.
DETAILS: International Lyme and Associated Diseases, www.ilads.org or 1-(301)-263-1080.
- Mary Beth Faller
Monday, May 09, 2005
Lyme disease sufferers hope to spur improved treatments
By PENNY RIORDAN, Special to The Bristol Press - 05/02/2005FARMINGTON -- It took eight different doctors before the ninth one finally diagnosed Randy Sykes with Lyme disease.
In between his first visit and his last visit, he was diagnosed and treated for pneumonia, fiybromyalgia, chronic fatigue syndrome, the beginning stages of leukemia and multiple sclerosis.
Chris Montes had to see nine different doctors as well, and suffer through a few years of thinking he had Meuniere’s disease, restless leg syndrome and the possibility of brain mass.
"What we have in Connecticut and across the country is a pandemic problem whereby patients are being under-diagnosed, certainly under-treated, and moreover misdiagnosed and then sold a line that they are going to have to live with whatever they have," said Montes, the town’s director of youth services and a resident of Unionville.
Connecticut still ranks No. 1 in terms of per capita increases of lyme disease, however, but the process and requirement for reporting new diseases are still flawed, Montes said.
Based on the number of people who show up to the monthly support group meetings, 45, as well as the number of people connected with the group, more than 300, the problem is sizable. Every one of the people who come to the group were diagnosed with something else before they were diagnosed with Lyme disease, Sykes said.
The problem is that there is not an accurate blood test for the disease, Sykes said. Most doctors will treat patients who test positive for it with a few weeks of antibiotics. For many patients, Lyme disease symptoms can persists, as well as dozens of co-infections that a tick bite can leave.
"People can have this cocktail of diseases that get passed on by the tick and they don’t know what they have," Montes said.
Lyme disease spreads in body via blood
NEW YORK, May 2 (UPI) -- U.S. researchers Monday said a five-year study shows the bacteria that cause Lyme disease often spread to distant sites in the body via the blood.The findings help shed light on why untreated patients often develop complications in areas remote from the tick bite location, researchers from the New York Medical College reported in the Annals of Internal Medicine.
The researchers looked for the presence of the Lyme disease bacteria in the blood of 213 untreated adults who developed erythema migrans, the bull's eye rash that often occurs on the skin around a tick bite site. Blood stream invasion was detected in patients who had the most severe symptoms and who were more likely to have multiple erythema migrans rashes.
Younger patients and those who previously had contracted Lyme disease appeared to have a degree of protection from the disorder.
Antibiotics, such as doxycycline, when initiated early after infection often can prevent long-term complications, such as joint pain, that can arise in untreated individuals.
Literati with Lyme
On May 19, 2005, internationally acclaimed authors will speak out on Lyme Disease. “Writer’s Block of the Worst Kind: An Open Book on Lyme”. For the first time, four nationally acclaimed authors and an executive editor are sharing the stage with two prominent medical authorities on Lyme for a firsthand account of the disease and its impact on peoples’ lives and livelihoods. Thursday, May 19, 2005, 7-10PM, the Lyme Disease Association (LDA) will host Literati with Lyme, a fundraising event at New York University, entitled “Writer’s Block of the Worst Kind.” The event is featuring Literati who have all had Lyme disease: Amy Tan (The Joy Luck Club and movie); Meg Cabot (The Princess Diaries series and movies); E Jean Carroll (advice columnist for Elle Magazine); Jordan Fisher Smith (Nature Noir: A Park Ranger’s Patrol in the Sierra); and Jennifer Weis (executive editor St. Martin’s Press).Columbia University Medical Center’s (CUMC) and NY State Psychiatric Institute’s Brian Fallon, MD, and International Lyme & Associated Diseases Society ( ILADS) Director Joseph Burrascano, MD, will participate in the “in conversation” event as the Literati tell the story of how Lyme affects their lives and impacts on their cognitive ability, giving a voice to thousands of Lyme disease victims who suffer in silence. The doctors will discuss the physiological causes of the authors’ often frustrating and sometimes alarming experiences with Lyme. Public question and answer period will follow. Books by participating authors will be on sale at the event with proceeds to the Lyme Disease Association.
To purchase tickets ($20) or get information for the May 19 event, please visit http://www.lymeliterat.org/ Further information about the authors can be found on http://www.LymeDiseaseAssociation.org
Literati with Lyme is the brain child of authors Jordan Fisher Smith and Amy Tan, and national Lyme Disease Association President Pat Smith. It is an effort by nationally-known authors, publishers, editors, literary agents, other publishing professionals, and the non-profit LDA to raise awareness of this growing infectious disease threat and to raise research funds for a cure. Literati with Lyme is supported by Columbia University Medical Center, Houghton Mifflin, Milkweed Editions, Penguin Group (USA) Inc., IGeneX Labs, the DEET Education Program, NYU Expository Writing and the School of Social Work, and a growing list of others. Donations to LDA’s Literati with Lyme are tax-deductible and will go to the LDA to support its public education and research efforts on causes and cures of Lyme disease, including the proposed Lyme disease research center at Columbia University Medical Center.
A limited number of tickets are still available for a private benefit reception for LDA hosted by Amy Tan at her Manhattan home. See Literati website for registration details.
Some Symptoms of Lyme Disease
1. CONSTITUTIONAL SYMPTOMS (GENERAL WELL BEING)· Fatigue, extreme or unusual
· Malaise
· Swollen glands
· Fevers, unexplained, high or low grade
. Continual infections (sinus, kidney, eye)
· New onset sensitivities
· New onset seasonal allergies
· Symptoms that seem to change, come and go
· Pain that migrates, moves to different body parts
· Early on, a flu-like illness, after which you have not been well
· Unexplained weight gain or loss
2. MUSCULOSKELETAL SYSTEM
· Joint pain or swelling
· Stiffness of joints, back, neck
· Muscle pain or cramps
· Muscle weakness
3. NEUROLOGIC SYSTEM (CENTRAL NERVOUS SYSTEM)
· Tremors or unexplained shaking
· Burning or stabbing pain
· Weakness or partial paralysis
· Pressure in head
· Numbness in body, tingling, pinpricks
· Lightheadedness, wooziness
· Increased motion sickness
· Gait disturbance
· Balance problems
· Clumsiness
4. MENTAL CAPABILITY (CENTRAL NERVOUS SYSTEM)
· Short or long term memory loss
· Confusion
· Difficulty thinking
· Difficulty concentrating
· Difficulty reading
· Slowed or slurred speech
· Stammering speech
· Problems with word retrieval
· Attention deficit (ADD)
· Hyperactivity
· Forgetting how to perform routine tasks
· Dyslexia
· Word, spelling or number reversals
· Brain "fog"
5. PSYCHOLOGICAL (CENTRAL NERVOUS SYSTEM)
· Mood swings
· Irritability
· Unusual depression
· Disorientation, getting lost
· Feeling as if you are losing your mind
· Overemotional reactions, crying easily
· Too much sleep, or insomnia
· Difficulty falling or staying asleep
· ADD/ADHD, especially new onset
· New onset anxiety
· New onset depression
· Obsessive Compulsive Disorder
· Manic depression
· Oppositional Defiant Behavior
· Bipolar disorder
6. RESPIRATORY AND CIRCULATORY SYSTEMS
· Shortness of breath, cough
· Chest pain or rib soreness
· Dilated cardiomyopathy
· Heart palpitations or extra beats
· Heart block (electric conduction disturbance)
7. HEAD, FACE, NECK
· Headache, mild or severe
· Unexplained hair loss
· Twitching of facial and other muscles
· Facial pain
· Facial paralysis (Bell's Palsy)
· Trigeminal neuralgia (TMJ)
· Tingling of nose, cheek, or face
· Stiff or painful neck
· Jaw pain or stiffness
· Sore throat
· Swallowing problems
· Painful gums
· Cracks around the sides of mouth
8. EYES / VISION
· Double or blurry vision
· Increased floating spots
· Pain or swelling, in or around eyes
· Chronic conjunctivitis
· Dry eyes
· Sensitivity to light
· Flashing lights
· Vision loss
9. EARS / HEARING
· Decreased hearing in one or both ears
· Buzzing in ears
· Pain in ears
10. DIGESTIVE AND EXCRETORY SYSTEMS
· Diarrhea
· Constipation
· Irritable bladder
· Ringing in one or both ears
· Fluid in the ears
· Ears popping
· Upset stomach
· Abdominal pain
· Nausea
11. REPRODUCTION AND SEXUALITY
· Loss of sex drive
· Sexual dysfunction
· Males: Testicular or pelvic pain
· Females:
· Unexplained menstrual pain or irregularity
· Unexplained breast pain, discharge
· Endometriosis
· Pelvic pain
12. TICK BITE OR RASH
· Rash at site of bite
· Rash at other body parts
· Rash basically circular and spreading out
· Rash, disappearing and returning
· Usually flat and expanding
· May or may not itch
· May be pale pink to fiery red or purple
This list is not all inclusive.
Tick bite is painless and may not be noticed. Rash is present only in about 50% of cases. Central nervous system involvement may begin hours after the tick begins feeding. The longer the tick has been attached, the more likely it has injected a greater number of bacteria. It is more important to get prompt medical treatment than it is to get the tick tested.
Sunday, May 08, 2005
Lyme disease incidence on rise in Iredell
4 cases reported so far this year, but changes could affect countKATHRYN WELLIN - Staff Writer
The incidence of Lyme disease, a tick-borne bacterial illness, is rising in Iredell County.
Last year, 16 cases were reported, the highest number since 1990, and up from seven the year before. So far this year, four cases have been reported. Yet the number of reported cases likely will start dropping due to changes in state reporting requirements last fall, said Rhonda Burrell, an Iredell County Health Department nurse who compiles the report.
Statewide, the number of cases has risen from 47 in 2000 to 156 in 2003.
When caught early, Lyme disease can be treated with oral antibiotics. When treatment is delayed, daily IV antibiotic therapy for a month or more is required.
Early symptoms mimic the flu, such as headache, fever and fatigue. Sometimes, there is a round rash around the tick bite, but often people do not realize they've been bitten. Untreated, Lyme disease can be disabling.
"The problem is we just ignore (early symptoms), thinking it's something else and then years later, we have problems," said Scott Lenhart, Iredell Health Department supervisor of health education. "It's a nasty disease, it really is, and it takes a long time to get rid of."
The health department reports the disease to the state and conducts public education campaigns, but is not a diagnostic or treatment center for the disease.
There are no infectious disease physicians based in the county, said Vince Cherry, executive director of Davis Regional Medical Center in Statesville. His hospital and Lake Norman Regional Medical Center have recruited an infectious disease specialist to work with both hospitals starting in June.
"It really is phenomenal, the growth in our two communities, that we believe an infectious disease specialist can be supported full time," he said.
Already, infectious disease specialists from Winston-Salem visit patients at Iredell Memorial Hospital daily and outpatients there once a week.
Many Iredell residents with later-stage Lyme disease travel to Huntersville's Jemsek Clinic, an infectious disease practice, said Scott Clontz, who asked county commissioners last week to focus on the rising number of infections locally. Clontz said he knows six people in his east Iredell community with the disease.
County commissioner Steve Johnson said several people at his church have Lyme disease. At his urging, the board decided that commissioner Ken Robertson, as a member of the Board of Health, would bring the issue to that board's attention and see if state help is available.
The health department plans to flood businesses with tick disease-prevention fliers. Community health outreach staffer Ric Bruton can speak to civic groups.
"They're preventable," Lenhart said. "Prevention is the key to any of these."
Rebecca Wells, battling Lyme disease, translates her illness in 'Ya-Ya
BETH FOUHYAssociated Press
Whether she is writing, meditating or gazing out her window at the salmonberry and wild cherry trees in her garden, Rebecca Wells takes time to count her blessings.
For the mega-best-selling author of "Divine Secrets of the Ya-Ya Sisterhood" and "Little Altars Everywhere," blessings are no longer measured in fame or riches or the legions of fans who have embraced the books and their tale of enduring friendship among four saucy, sassy Louisiana ladies.
Struck with chronic illness shortly after her books began their remarkable ride up the best-seller lists, Wells now finds quiet grace in living a simple life, and enjoying the fact that "Ya-Yas in Bloom," her latest installment in the saga, came to be written at all.
"I think 'Ya-Yas in Bloom' is perhaps a more tender book than my first two," said Wells, who has declined interviews because of her health but agreed to an e-mail exchange with The Associated Press. "Illness and the love I have been given have taught me about the need for tenderness. I know more deeply that we all need more compassion and kindness than this fast, consumer-driven world encourages."
The challenge of writing "Ya-Yas in Bloom" was just one part of Wells' terrifying descent into debilitating illness that began seven years ago, just as she was adjusting to the heady overnight fame wrought by her first two novels, which prompted women all over to form "Ya Ya" clubs to share books and do good works.
She began having dizzy spells which caused her to fall, and over time she became hypersensitive to sound. Then she developed respiratory infections, freezing hands and feet, and a multi-chemical sensitivity that made even the slightest whiff of perfume almost unbearable. For more than a year, she was tethered to an oxygen tank in her home near Seattle for at least two hours a day.
"The terror of not knowing what was happening to me was dreadful," Wells recalled.
After numerous misdiagnoses by a dozen different practitioners, Wells was finally diagnosed with Lyme disease and babesiosis, a rare, tick-borne illness with symptoms similar to malaria. Through a regimen of anti-malarial medications and antibiotics, she is hopeful that one day her body will be restored to some approximation of normal health.
Lyme disease bacteria are transmitted to humans by ticks that are carried by smaller animals and picked up by deer. The disease is often identified by an expanding "bull's-eye" rash that develops days to weeks after a tick bite. If untreated, the disease can cause joint swelling and brain inflammation. Lyme disease was named in 1977 when a cluster was identified in Lyme, Conn.
"I wake up every day and try to play the hand I've been dealt as best I can," said Wells. "There is deep joy in discovering that you can be sick and also happy. I look for the blessings and lessons in my illness, and trust that my soul is being formed."
Writing "Ya-Yas in Bloom" helped Wells focus on something other than her illness, but each day also sorely tested her will.
At her sickest, she was unable even to lift her hands, so she would lie in bed and dictate the book into a tape recorder. On better days, her husband, photographer Tom Schworer, would carry her to her computer, where she would work for 20 minutes at a time before stopping to rest. On her best days, she could write about four or five hours, less than half of her normal level.
In her bleakest moments, Wells said she drew inspiration from another esteemed Southern author, Flannery O'Connor, who wrote while suffering from lupus, a chronic autoimmune disease that eventually killed her.
"If ever there was a model to help me out here, it's Flannery," Wells said.
Another inspiration has been her friend and colleague, Amy Tan, the best-selling author of "The Joy Luck Club" and "The Kitchen God's Wife," whose own prodigious writing career also was nearly destroyed by Lyme disease. Tan, who suffered from the illness for four years before being diagnosed in 2003, says she didn't write a word during that time. She has since become an activist for Lyme disease awareness and a source of support for other writers suffering its ill effects.
"I got to know Rebecca in part because we both write about mothers and daughters, and the mothers tend to be intense and kind of looney," Tan said. "We talk a lot because she knows I understand Lyme disease, what it means to write and what it means to be public about it. She often says to me, 'Only another writer who has this would know.'"
In "Ya-Yas in Bloom," readers are reintroduced to Vivi, Caro, Neecie and Teensy, the boozy, raucous quartet who form the heart of the sisterhood. But here Wells digs deeper into the lives of the Ya-Ya offspring (better known as the Petites Ya-Yas) and further explores some of the male characters, especially Vivi's husband, Big Shep.
While insisting that the Ya-Ya books are not autobiographical, Wells says she bases many of her characters on the memorable women and men she knew as a girl growing up in a heavily Roman Catholic area of central Louisiana.
"In each of my books, the power of Catholicism has had a strong presence," Wells said. "And in this new book, we see this particularly with Vivi, as she struggles to make her peace with what was for her a very restrictive, punishing religion which treated women as impure sources of temptation, instilling guilt so deep it reached a cellular level."
With the huge success of the first two books, which collectively sold more than 8.5 million copies in the United States and spun off a hit feature film, HarperCollins is counting on a big showing for "Ya-Yas in Bloom," ordering 500,000 copies in its initial run.
But Wells' lingering illness means she may do little to promote the book. She's agreed to answer a few questions from participants in AOL's book club, which selected "Ya-Yas in Bloom" as its latest pick. And she helped redesign the Ya-Ya.com Web site, whose "Gumbo Ya-Ya" chat room has become a cyber sounding board for women seeking connections.
"In our present complex age, it is especially important to prioritize friendship and cultivate it like a beloved garden," Wells said. "Many women have told me that they read my books, and found encouragement to renew, expand and create unions of women that help them grow, change and weather the inevitable storms of life."
Wells makes her home on an island in Puget Sound, where she lives with her husband in a hillside home with sweeping views of the water. And as she begins work on her next Ya-Ya book, she has worked on accepting her new limitations while rejoicing in her continued gifts.
"The redheaded firecracker that I used to consider myself to be is passe," she said. "At first, I mourned losing her. But now I'm getting used to a more mindful way of being that is more about love than about time. That redhead I used to be moved too fast anyway."
One Man's Multitude Of Misery With Lyme Disease
In this, the 30th year since Lyme disease got its name, Van Brown of Mystic is grateful that he knows, at last, what he has. Or presumes he knows.
The physical and neurological miseries, and the prolonged expedition through medical mazes, and the terror, all that he has down. There was the physician, no longer in practice, who told him he might have pancreatic cancer. The Mayo Clinic, he said, recently concluded that he indeed had degeneration of the brain, but then sent him on his way without any solution.
"Lyme is a very, very ugly disease," said Brown this week from Texas, where, at the Academy of Oriental Medicine at Austin, he is undergoing a regimen of acupuncture, Rolfing and other alternative treatments to relieve some of his discomfort. He said he tries to get to Austin at least once every couple of months.
Brown, who is 52 and a financial strategist, is perhaps best known in the community for his philanthropy, particularly toward the Eastern Connecticut Symphony Orchestra. His wife, Beth Tillman, has been president of the ECSO, and Brown was head of the symphony's Friends group. He's also taught aquaculture at Ledyard High School.
Since the early 1980s, or about a decade after Lyme was identified as the cause of an epidemic of arthritis occurring in and around Lyme and Old Lyme, Brown said he's been trying to find someone to help him. He has experienced loss of taste and loss of smell, loss of memory and vertigo, and chronic knee problems, which he'd always attributed to football during his Texas school days.
He was convinced he had the symptoms of Lyme, but various tests he underwent through the years showed no evidence of it, or so he was told.
In the fall of 2004, seeking a way to reverse some of the brain damage he'd incurred, he visited the Advanced Magnetic Research Institute of North Carolina, in Mocksville, N.C. There, Dr. Larry A. Pearce, a neurologist, suspected Lyme might be at the root of Brown's troubles. Pearce, said Brown, indicated that antibiotics, at such an advanced stage of Lyme, would have little effect and suggested trying to bolster Brown's immune system.
Tillman, an attorney, has heard all the skepticism about quacks and myths and phantom cures for Lyme. But she said she's made a dedicated study of the disease, which, is now considered the most common vector-borne disease in the United States, according to the American College of Physicians. The bite of a tick infected with the bacterium Borrelia burgdorferi is the means of transmission.
"Seven of the standard tests, the Centers for Disease Control standard-type tests, on Van all came back negative," she said. "But those tests are only good for about 30 days after the infection and on out to about 120 days. There is no doubt in my mind that he has been afflicted with something we presume to be Lyme disease, now that he's been fully diagnosed."
A local Lyme expert agreed that antibiotics won't always do much for neurological Lyme disease, the rarest form of the disease. "Those patients are difficult to treat with anything," he said.
Besides his visits to Austin, Brown is regularly seen by a chiropractor in Warwick, R.I., has undergone electro-magnetic treatments, practices Qi Gong, a Chinese meditation, and ingests, in his words, a battery of herbs and supplements, including Samento, a derivative of Cat's Claw, a South American vine that helps relieve arthritis pain.
The level of his infection with Lyme has dropped substantially in the last year, said Brown, but he is hardly free of it. He worries about all the others like him who don't receive the right help.
"The insidious part of the disease," he said, "is that you're told all the time you're imagining it. You can't keep your balance, your memory is affected, and everyone tells you it's all in your mind."
Sunday, May 01, 2005
Basic Q&A's about Lyme
Lyme Disease and associated diseasesA plain-language introduction to tick-borne diseases
THE BASICS
Fourth Edition June 2004
written by Douglas W. Fearn
Q. What is Lyme disease?
A. Lyme disease is a bacterial infection, most commonly contracted from a tick bite, that may initially cause a flu-like sickness. Untreated, or inadequately treated, it may cause long-term, persistent illness that often affects many systems of the body. Other tick-borne diseases are often contracted at the same time.
Q. How do you get it?
A. Lyme Disease (LD) is spread primarily through the bite of a deer tick. Some researchers believe that other ticks and some biting insects such as mosquitoes, fleas, biting flies, and lice may also transmit LD. Babies may be born infected if the mother is infected, or possibly acquire it through breast milk. A blood transfusion with Lyme-infected blood may transmit the disease to the recipient. Some specialist medical researchers believe that Lyme, or other tick-borne diseases, can be sexually transmitted, although there has never been any research to confirm or deny it.
Q. How do I know if I have Lyme disease?
A. This can be a problem because the symptoms of LD are very similar to those of many common infections, and mimic some of the symptoms of other diseases. One sign that is almost unmistakable is the development of a bull’s eye rash around the site of a tick bite. If you have this rash, you have Lyme disease. The bull’s eye rash varies considerably in different people, but it is typically centered on the tick bite and may range from a fraction of an inch to many inches in diameter. It may be colored anywhere from a mild red to a deep purple. It may appear in a few days or even several weeks after the bite. It may spread to other areas of the body, or there may be additional rashes far from the primary one. The classic rash has concentric areas of lighter and darker colors, but the rash is not always in a bull’s eye form. It is usually painless, but it may be warm to the touch and may itch. Typically it is flat, but some people have raised areas or bumps in the rash. Unfortunately, not everyone develops a rash, and many people fail to notice it if it is in a hard-to-see location, such as the scalp. Fewer than half the people who develop LD recall a rash or a tick bite.
Other symptoms may appear at the same time. These often mimic a cold or flu, with fever, headache, muscle and joint pains, tingling or numbness, and/or general fatigue. Early Lyme can produce a wide range of symptoms, or no symptoms at all, and is different in each person. The varied symptoms may change rapidly, sometimes within hours. The symptoms may disappear in a few days or a week (even without treatment), or may be so minor that the infected person barely notices them. Since flu season runs during the winter months, and most LD infections occur during the other seasons, any case of “flu” in warm weather should be considered suspect.
Even if these initial symptoms subside, the bacteria can remain in your body and may harm you later. In other cases, symptoms become increasingly severe, requiring prompt medical attention. In persistent Lyme disease, symptoms are most often severe fatigue, pains that seem to have no obvious cause, and neurological and/or psychiatric problems. The disease may involve multiple body systems and organs. Symptoms may be complicated by other tick-borne co-infections acquired from the same tick bite.
You should insist on no less than six weeks of antibiotic treatment if you have a tick bite with a bull’s eye rash. If your doctor refuses, it may be prudent to search for a a doctor who will support extended treatment.
Q. Is there a test for LD?
A. According to the CDC, there is no reliable test for Lyme disease at this time. Your doctor should base his or her diagnosis on your symptoms, medical history, and your exposure to ticks. Doctors should not rely solely on tests. There are several blood tests available, but all have problems. The blood test typically used by most family doctors, called an ELISA (or Lyme titer) test, means nothing if it is negative, and it rarely indicates infection if it is performed too early (2 to 6 weeks after the tick bite).
Patients with persistent LD seldom have a positive ELISA test, possibly because they have ceased to produce the antibodies the test looks for. Most experts believe that the ELISA test is only about 30-60% accurate. The ELISA test is not based on the specific Lyme bacteria strain that is most useful for accurate diagnosis. While a positive ELISA test is a reasonably reliable indication of infection, a negative test is useless.
There are other tests that may be more accurate.
The Western blot test for Lyme disease often shows infection when an ELISA test does not. Unfortunately, the U.S. Centers for Disease Control (CDC) have set arbitrary criteria for considering a Western blot test as positive for LD. These criteria were established for statistical analysis of the spread of the disease and were not intended to guide doctors in their diagnosis and treatment. The CDC surveillance criteria are very strict and miss many people with LD. Doctors who use only the CDC guidelines to decide whether or not to treat leave many infected people without proper antibiotic treatment.
Even if the test results are not positive by CDC standards, any positive Lyme-specific “bands” are useful indicators of infection.
Another test, PCR analysis, looks for the DNA of the Lyme bacteria in blood, urine, or tissue. Multiple tests are usually required before a sample is obtained that contains the bacteria. However, in recent years PCR testing has become extremely reliable when positive. Most doctors are unaware of this test.
Medical textbooks, the FDA, and the CDC emphasize that LD is a clinical diagnosis, which means that the doctor should examine the patient for typical LD signs, listen to the patient’s history and description of his or her symptoms and use this information to make a determination.
Blood tests are usually done at the same time, but should not be relied upon. If the doctor suspects LD, and sees little reason to believe the patient has some other disease, he or she should begin antibiotic treatment without delay.
Of course, doctors should also perform general blood and other tests to rule out other diseases or conditions.
Q. Are all testing labs the same?
A. No, they are not. Some labs have made special efforts to focus on tickborne
disease testing and they use procedures that make their tests
more reliable and sensitive to LD. Use the resources in the back of this
booklet to help you identify laboratories that utilize tests that are more
sensitive to tick-borne disease organisms, and urge your doctor to send
your blood sample to one of the specialist laboratories. Test kit request
forms may be available on the laboratory’s web site.
Q. I had a bull’s eye rash and other symptoms, but my
doctor said my blood tests showed I didn’t have LD, so it
must have been something else, right?
A. Almost certainly not! This scenario has caused many people to needlessly
suffer for months or years. Left untreated, LD can be a devastating
disease. There are few conditions that mimic the LD rash. Lyme-literate
doctors suggest starting immediate antibiotic treatment, regardless
of the results of any tests.
Often a person suffering from chronic, unsuspected Lyme disease will
be diagnosed as having something else, such as chronic fatigue syndrome,
fibromyalgia, lupus, multiple sclerosis, Parkinson’s disease,
Alzheimer’s disease, ALS, Crohn’s disease, carpal tunnel syndrome,
temporomandibular joint disorder (TMJ), and a wide variety of psychological
or psychiatric disorders. Doctors often mistake tick bites for spider
bites, but spider bites are actually uncommon. In areas where LD is
prevalent, it should be seriously considered before a doctor denies
antibiotic treatment.
Q. What happens if LD is not properly treated?
A. This varies tremendously among individuals. Some people may never
have a recurrence of symptoms, while others may become permanently
disabled from LD that is untreated or inadequately treated. Serious
symptoms can appear immediately or they could take months or years
to develop. The most common symptoms are unrelenting fatigue; joint
or muscle pain (particularly in the neck, knee, back, or foot); vision or
hearing abnormalities; numbness or tingling, particularly at the extremities;
facial paralysis; heart damage; psychological disturbances; and
stomach problems. (There is an extensive checklist of symptoms in the
back of this booklet. Consider bringing this list to your doctor if you suspect
you have LD.)
Untreated LD can result in neurological disorders, crippling arthritis,
blindness, deafness, psychiatric or psychological disorders, or death.
Ehrlichiosis, a common co-infection spread by ticks, has a 5% death rate
in untreated children.
Q. What is the proper treatment for Lyme disease?
A. Antibiotic treatment is the simple answer. But the detailed answer is
unknown. If they are treated immediately after a tick bite, many patients
seem to obtain elimination of all symptoms after a course of six weeks
of an oral antibiotic like doxycycline. However, it is not known if this
treatment permanently cures the disease. If you had a tick bite and a
rash, you should be treated with antibiotics as long as symptoms persist.
If there is any recurrence of symptoms after treatment, your doctor
should put you on another course of antibiotics.
A patient who seems to be symptom-free should be vigilant in watching
for any recurrence, and so should his or her doctor.
At the other end of the spectrum, some patients find no relief at all from
a short course of antibiotics, particularly if they have co-infections. Many
long-term LD patients given the standard oral antibiotic treatment seem
to do fine for years and then suddenly they experience the same or new
symptoms. Often a stressful life event such as a jarring accident, head
injury, surgery, divorce, or a death in the family can trigger reemergence
of symptoms mimicking a new infection. Some patients obtain relief
with another course of oral antibiotics, while others require long-term
treatment with oral, intravenous (IV), or injected antibiotics. Because of
the complexity of the Lyme bacteria’s life cycle, combinations of antibiotics
may be necessary.
In addition to medication, Lyme patients need to develop a good program
of exercise and nutrition. Patients on antibiotics need to take acidophilus,
which replaces the good bacteria (killed by the treatment) that
are necessary for the body’s digestive system to function properly. Many
patients also take supplements that help boost the immune system.
Consult with your physician on all non-prescription treatments.
Q. How does my doctor know when I am cured?
A. Many doctors who treat LD patients avoid using the term “cured”
because of the possibility of a relapse in the future. However, most Lymeliterate
doctors believe that treatment of persistent infection should continue
for at least two months after all symptoms have disappeared. Both
the patient and the doctor should be prepared to resume treatment if
symptoms recur.
Q. Isn’t there a vaccine for Lyme disease?
A. There was one, but the manufacturer has taken it off the market.
Evidence indicated that people with a certain gene might develop an
autoimmune arthritic disease from the vaccine. About 30% of the population
has this gene, and taking the vaccine could result in severe arthritis.
There is no known cure for this condition. Some doctors have seen
cases where “cured” or previously undiagnosed LD is reactivated in
patients who were vaccinated. There are currently lawsuits against the
vaccine manufacturer. The vaccine offered no protection against other
tick-borne disease co-infections that frequently accompany LD.
The vaccine was only about 80% effective and it is not known how long
the partial immunity lasts.
Perhaps a safe and effective vaccine will be developed in the future, but
for now, the only way to avoid contracting Lyme disease is to avoid ticks
and the other possible sources of infection.
Q. Once you have had Lyme disease, you’re immune,
right?
A. No. You can get Lyme over and over from new tick bites. Each new
tick bite can infect you with a new case of Lyme disease or other tickborne
diseases. Some Lyme doctors believe that each subsequent infection
makes symptoms more severe and treatment more difficult.
Q. Why haven’t I heard much Lyme disease until
recently?
A. Lyme disease and its variants have been known throughout the world
for at least 100 years (often by different names). There are hundreds of
identified strains of the bacteria that causes LD, dozens of them in the
U.S. There is even evidence that prehistoric people were infected with it.
Also, in the past, patients with LD may have been undiagnosed or misdiagnosed
before doctors became more knowledgeable.
However, it does seem that Lyme disease is much more prevalent now
than it was in the past. The “reservoir” for Lyme disease is the white-footed
mouse (and other small animals in some parts of the world). The
Lyme spirochetes live in the blood of the mouse and are passed to a tick
when it feeds on an infected mouse. The white-tailed deer is a major host
for the ticks that carry LD, and the deer ensure that the ticks and their
Lyme spirochetes have a comfortable place to live and breed. Many
areas of the U.S. have had a tremendous increase in the deer population
in recent years, so there may be many more ticks in the environment.
The loss of diversity in our wildlife means that ticks are more likely to
attach to the mice that harbor the Lyme bacteria. Birds are known to
transport ticks to new areas.
Q. Why don’t doctors know more about Lyme disease?
A. Some doctors are very up-to-date on the latest research on LD, but
many are not. Many doctors are taught that LD is rare and easily-cured
and they may think that it is not a serious disease. With thousands of diseases
and conditions to learn about, Lyme doesn’t seem to rank very
high with the majority of doctors, even though it is the most common
vector-borne infectious disease in the U.S. Nevertheless, it is a major
medical problem in the U.S., resulting in billions of dollars in expenses
and lost time from work. Nearly 24,000 new cases were reported to the
CDC in 2002, and it is estimated that at least ten times that many cases
are not reported.
Q. What can be done to address these issues of poor
tests and uninformed doctors?
A. Organizations such as the International Lyme and Associated
Diseases Society (ILADS, an organization of LD health professionals),
the Lyme Disease Association, the Lyme Disease Foundation, Lyme
Disease Association of Southeastern Pennsylvania, and many others
have programs that are aimed at educating the public and doctors on the
latest information about the disease. These organizations are working on
federal legislation that would fund research into prevention, more accurate
tests, and improved treatments for Lyme disease and co-infections.
Q. What are these “co-infections” and “associated
diseases?”A. The ticks that carry the Lyme bacteria also often carry microorganisms that cause other diseases. The most common “co-infections” are
ehrlichiosis, babesiosis, bartonella, and Rocky Mountain spotted fever.
Ehrlichiosis, bartonella, mycoplasma, and Rocky Mountain spotted fever
may be cured by some of the same antibiotics that are prescribed for
Lyme disease. But babesiosis is a different type of disease, caused by a
blood parasite and not a bacterium. Antibiotics alone are not effective
against babesiosis. It’s a sobering fact that new tick-borne diseases are
being discovered every year.
Few doctors are familiar with these diseases. They may fail to recognize
the symptoms or test for these diseases, so many people are suffering
from untreated infections. The lab tests for these co-infections have
many of the same problems as LD tests. Often, it is this combination of
diseases that makes the patient so mystifyingly ill and unresponsive to
treatment.
Q. What are the symptoms of ehrlichiosis?
A. Like Lyme disease, ehrlichiosis infections peak during May, June,
and July and the symptoms typically appear from a week to a month
after infection. The initial symptoms are flu-like and can include high
fever, chills, headache, fatigue, and general achiness. Fewer than half of
infected people report a rash. The rash is different from a Lyme disease
rash; it is usually smaller and may have raised areas. The rash is more
common in children than adults. As in Lyme, children may also suffer
from swelling of the hands and feet. Other symptoms may develop later,
including nausea, diarrhea or constipation, loss of appetite, cough, stiff
neck, confusion, and weight loss. Untreated, the disease can sometimes
be fatal in a few weeks, especially in children.
Q. How is ehrlichiosis diagnosed?
A. There are blood tests for ehrlichiosis, which vary in accuracy and reliability
depending on when the test is performed. It is difficult to obtain
an accurate test result during the first few weeks after infection.
Q. How is ehrlichiosis treated?
A. Ehrlichiosis is usually treated with doxycycline. Most cases respond
quickly when diagnosed and treated promptly. Like Lyme disease, you
can get ehrlichiosis over and over again from new tick bites.
Q. What are the symptoms of babesiosis?
A. People with babesiosis sometimes have no symptoms at all. However,
it can be life-threatening for someone with a suppressed immune system.
It is also more serious for people over age 50. Symptoms are often
the same as for Lyme disease (see list in the back of this booklet), but
there may also be a very high fever of up to 104°F, and anemia. Night
sweats, chills, severe headaches, fatigue, and sleep disturbances are
common. You can get babesiosis from a blood transfusion from an
infected donor.
Q. How is babesiosis diagnosed?
A. There are blood tests, but the test reliability declines after a few
weeks of infection. These tests suffer from the same lack of sensitivity
that plagues Lyme disease testing. PCR tests for babesiosis can be useful
if positive, but a negative result does not rule out the disease.
Examining the red blood cells under a microscope may reveal the para12
sites, but few diagnostic laboratories are skilled at the tedious job of
carefully observing the blood cells.
Q. What is the treatment for babesiosis?
A. It is important to remember that babesiosis is caused by a protozoan
parasite and not by a bacterium, so antibiotics alone will not cure this
disease. Many people appear to recover without treatment, but the disease
may flare-up later. Since babesiosis is closely related to malaria,
anti-malarial drugs are used to treat it. Usually a drug like Malarone or
Mepron is used along with an antibiotic such as azithromycin; the combination
increases the effectiveness of the treatment. The anti-malarial
drugs are very powerful and patients often have a limited tolerance of
the side-effects, so treatment may have to be interrupted several times.
As with most tick-borne diseases, you do not develop any immunity after
infection and you can get babesiosis over and over.
Q. What are the symptoms of bartonella?
A. Bartonella usually starts with a rash and swollen glands. Often it is a
mild disease and the symptoms subside on their own. But in some cases,
bartonella may cause on-going fatigue, mental symptoms, headaches,
swollen glands, arthritis, generalized aches and pains similar to the
other tick-borne diseases, seizures, neurological disorders, and even
dementia. Vision loss and eye infections may occur. Symptoms tend to
come and go.
Some areas have a very high rate of bartonella organisms in ticks, sometimes
much higher than the rate of Lyme bacteria.
Q. How is bartonella diagnosed?
A. There are blood tests, but as with other tick-borne diseases, the tests
are often inaccurate. Some doctors report success with a series of PCR
tests, but tick-borne bartonella has not been recognized long enough to
have other reliable diagnostic testing procedures. Few doctors are familiar
with tick-borne bartonella. The tick-borne disease is a variant of the
bacteria that causes “cat scratch disease,” which typically is far less serious.
Q. What is the treatment for bartonella?
A. Antibiotics are used to treat bartonella. As with the other tick-borne
diseases, treatment time can be lengthy. Since this disease has been recognized
only recently, doctors are still learning which drugs are best.
Some doctors report that Ciprofloxacin may be effective.
Q. What are the symptoms of Rocky Mountain spotted
fever?
A. Despite its name, Rocky Mountain spotted fever is far more prevalent
in the South and East than it is in the Rocky Mountains. Like Lyme disease,
it is caused by a bacterium. Untreated, it can sometimes be a fatal
disease. It is spread by dog ticks as well as the deer tick. After two to
fourteen days, most infected people suffer from a fever (sometimes
102°F or higher), headache, and achiness. Most people will develop a
rash which may begin around the wrists and ankles, but it sometimes
starts on the trunk. A classic symptom is a rash on the palms and soles
of the feet, but fewer than half of the patients will have that. Untreated,
half of the people infected with Rocky Mountain spotted fever will develop
permanent neurological problems.
If you handle a tick while removing it, be sure to wash your hands thoroughly
to minimize your risk of infection with RMSF. There are reports
of infection simply from contact with an infected tick.
Q. How is Rocky Mountain spotted fever diagnosed?
A. Like Lyme disease, RMSF is a clinical diagnosis, which means that it
is up to your doctor to evaluate your signs and symptoms to determine
if you have the disease. Early blood tests are not accurate.
Q. How is Rocky Mountain spotted fever treated?
A. Doxycycline is the recommended antibiotic for RMSF.
Q. Can children get Lyme disease and these other tickborne
diseases?
A. Yes, and because they spend more time outdoors and may not know
what areas to avoid, they are at greater risk than adults. Their symptoms
may be very different from an adult case of LD.
Children infected with LD often initially have a flu-like illness during the
summer months and may sleep for a day or more. They often complain
that light hurts their eyes. Few children develop the bull’s eye rash.
Stomach problems are common in children with LD.
With long-term LD, they tire easily and often do not want to participate
in physical activity. Most devastating are the cognitive problems LD may
bring. Infected children may suddenly develop learning disabilities
and/or behavior problems. Many researchers find that LD is the cause
of some instances of Attention Deficit Hyperactivity Disorder (ADHD).
Some children become physically impaired or even disabled. Teenagers
in particular may suddenly exhibit psychological problems. Many children
of all ages struggle in school.
Q. How are children treated for Lyme disease?
A. Antibiotics are used to treat LD in children, but the drugs used may
be different from those used to treat adults. Unfortunately, not many
doctors are experienced in diagnosing and treating LD in children.
Q. What about pregnant and nursing mothers?
A. A woman with Lyme or other tick-borne diseases can transmit the
infection to her baby before or after birth. The DNA of Lyme bacteria
can be found in breast milk and it may be possible for the baby to be
infected from nursing. Unfortunately, many antibiotics are unsafe for
pregnant or nursing mothers, so a doctor’s choice of treatment is limited.
Expectant mothers need to be extremely careful to avoid becoming
infected with tick-borne diseases. Early and aggressive antibiotic treatment
of the mother during pregnancy appears to be effective in preventing
infection of the newborn.
Q. How do I prevent Lyme disease?
A. The simple answer is to avoid being bitten by a tick. This isn’t a very
practical answer for many people who enjoy working and playing outdoors,
and some occupations expose workers to ticks every day. Many
Lyme sufferers were bitten in their own yard. But there are some things
you can do to reduce your risk.
Ticks are most plentiful in areas where woodlands transition into fields,
meadows, or yards. Ticks are often found in tall grass, gardens, or mulch
beds. Deer paths through the woods are often loaded with ticks. Leaf litter,
wood piles, and rock walls are also areas of high tick concentration.
Where mice are present, ticks are usually abundant.
When you are in such areas, you need to be particularly vigilant to prevent
a tick from attaching to your body. There are various insect repellents
such as permethrin spray, that may help. Insect repellents containing
DEET are also effective. (On children, for safety, avoid products that
contain more than 30% DEET.) Light-colored clothing makes it easier to
spot ticks. Wearing long pants, long-sleeved shirts, and a hat are helpful.
Tuck pant legs into socks to make it more difficult for ticks to crawl up
your legs. Walk in the center of trails. After any time spent outdoors,
check for ticks while you are out and as soon as you get back. Showering
is also helpful. Remember that some of the ticks are extremely small and
are almost impossible to see. Putting your clothing in a clothes dryer at
high heat will kill ticks in about an hour.
There are products that can be used outdoors to kill ticks. For example,
Damminix™ consists of cotton balls soaked in permethrin insecticide
inside cardboard tubes that you place around your property where you
expect field mice may live (wood piles, stone walls, etc.). The cotton will
be used by mice building their nests. The permethrin in the cotton kills
the ticks on the mice with minimal danger to people, pets, or wildlife.
Some communities are experimenting with deer feeders that apply
insecticide to the deer as they eat. Tick traps are also commercially
available. Some lawn care companies can spray your yard with a version
of permethrin.
Even if you rarely go outside, you can still be infected if your pets bring
ticks into the house. Veterinarians recommend a product like
Preventic™ collars, Frontline™, and Top Spot™ to minimize the risk.
(Use of chemicals is a personal decision and we do not make product
recommendations.)
Some researchers think that Lyme can be spread by other biting insects
like mosquitoes, horseflies, deerflies, fleas, and lice. Although human
infection has not yet been proven, these insects have been shown to
carry the Lyme bacteria.
Q. What should I do if I am bitten by a tick?
A. The tick should be removed promptly by pulling it slowly straight out
with fine-pointed tweezers or a special tick-removal tool inserted as close
to the skin as possible. Do not apply heat, alcohol, petroleum jelly, or
any other substance. (Aggravating the tick in this way may cause it to
regurgitate into your blood, increasing your chances for infection.) Do
not squeeze the tick with your fingers either, as this can force Lyme bacteria
into your body. You can use antiseptic on the site of the tick bite
after the tick is removed.
Some experts believe that you can be infected almost immediately after
the tick attaches to your skin, while others think it takes 24 hours or
more to be infected.
Q. What should I do after removing a tick?
A. Call your doctor. Some doctors will prescribe several weeks of an
antibiotic such as doxycycline as a preventive measure. If you develop
symptoms after a tick bite, see your doctor and be sure to get adequately
treated for LD and any co-infections you may have contracted.
You can save the tick in a plastic bag or small bottle and show it to your
doctor so he can see what bit you. Ticks can be tested for a price, but
treatment should not be delayed while waiting for results. A false-negative
result could affect your doctor’s decision to treat you.
Q. I think I have Lyme disease. How can I help my doctor
in the diagnosis and treatment?
A. First, keep careful track of your symptoms. Use the list in this booklet
to check them off and take the list to your doctor. It’s easy to forget
to mention something important during an office visit. Make a copy of
your list to leave with your doctor. Even if a symptom seems minor, you
need to tell the doctor. He needs all the information to make a diagnosis.
If your doctor seems skeptical of LD, you might want to bring some
printed literature that may help him or her. Make sure that what you
bring is from a credible source (such as a recognized medical journal),
and present it tactfully. The Resource section in the back of this booklet
will guide you to appropriate information.
Some doctors respond positively to patient input, but many do not. If
you are not satisfied with the way you are being treated by your doctor,
it may be time to find one better qualified to help you. Most patients with
persistent LD have been to several doctors before getting a proper diagnosis
and treatment.
Lyme Disease, perhaps more than most conditions, requires the active
participation of the patient if good health is to be regained. Your efforts
to educate yourself about LD will be well worth the time spent, and your
doctor may learn as well.
Q. How do I find a good doctor for Lyme Disease
diagnosis and treatment?
A. Ask at your local Lyme disease support group’s meeting, or ask a LD
patient who seems to be well-informed. Doctors who treat LD generally
prefer to maintain a low profile, since there is controversy surrounding
this disease. The Lyme Disease Association maintains a nationwide doctor
referral list, available at www.LymeDiseaseAssociation.org or call 1-
888-366-6611.
Q. Why is there so much controversy regarding Lyme
Disease?
A. That’s one question that seems not to have a logical answer. There is
a huge difference of opinion between some academic doctors and the
doctors who actually treat Lyme patients. Some influential academic
doctors have taken a position that LD is hard to catch and easily cured
with a few days or weeks of oral antibiotics. They have advocated this
position for a long time and they may be ignoring new research. The evidence
is overwhelming that LD is a serious and potentially debilitating
illness that can become a persistent, life-long disease. The cost of proper
early treatment is far less than the expense that most LD-sufferers
incur in their quest for relief.
What is Lyme Disease?
1. Lyme disease is prevalent across the United States. Ticks do not know geographic boundaries. A patient's county of residence does not accurately reflect their total Lyme disease risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for each individual.2. Lyme disease is a clinical diagnosis. Spirochetal infection of multiple organ systems causes a wide range of symptoms. Familiarity with its varied presentations is key to recognizing disseminated Lyme disease. Case reports in the medical literature document its protean manifestations.
3. Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture proven Lyme borrelial infection.
4. Fewer than 50% of patients with Lyme disease recall any rash. Although the bull's eye presentation is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is pathognomonic of Lyme disease and requires no further verification prior to starting 6 weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate.
5. The CDC surveillance criteria were devised to track a narrow band of cases for epidemiologic change and were never set up to be used as diagnostic criteria nor were they meant to define the entire scope of Lyme disease. This is stated in the 3/25/91 NIH report.
6. The ELISA test is unreliable, and misses 35% of culture proven Lyme (only 65% sensitivity!) and is unacceptable as the first step of a two step screening protocol. (By definition a screening test should have 95% sensitivity.)
7. Of patients with acute culture proven Lyme disease, 20-30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus, the IgG Western Blot is even less sensitive in detecting chronic Lyme infection yet the IgM Western Blot may work. For "epidemiological purposes" the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they have been chosen for vaccine development. However, for patients not vaccinated for Lyme, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure.
8. When used as a part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports on all 16 bands as part of their routine comprehensive analysis. Laboratories (such as SmithKline) that use FDA approved kits (for instance, Mardex's Marblot) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria. and increase the risk of false negative results. These kits may be OK for surveillance purposes, but offer too scanty of an analysis to be useful in patient management.
9. A preponderance of evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms in chronic Lyme disease.
10. There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.
11. An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long term antibiotic therapy.
12. Many patients with Lyme disease require treatment for 1-4 years, or until the patient is symptom free. Relapses occur and maintenance antibiotics may be required. There are no tests available to assure us whether the organism is eradicated or the patient is cured.
13. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.
14. Antibody titers for Babesia microti, HGE, HME (other tick transmitted diseases) should be performed. The presence of co-infection points to probable Lyme infection, and when left untreated increases morbidity and complicates successful treatment of Lyme disease.
15. Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurologic conditions, as well as arthritis, CFS, Gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes.
*This information came from the International Lyme and Associated Diseases Society
Amy Tan, writer of "The Joy Luck Club"
The Novelist, Under Treatment for Late-Stage Lyme Disease, Could Never Have Conceived How Hard It Would Be to Get a Diagnosis -- or How Surreal the Symptoms Could BeBy J.J. McCoy
Washington Post Staff Writer
Tuesday, August 5, 2003; Page HE01
It wasn't until she began having hallucinations about a naked man approaching her bed that novelist Amy Tan got really worried.
She first assumed what she was seeing was her husband, who brings her coffee in the morning. "But it was the middle of the night," she recalls, and "he wasn't saying anything or doing anything else. He was just coming toward me [before stopping] next to the bedstand, as though he was turning on the light."
She took his silence to mean the worst.
"I thought someone was dead," she recalls. "I reached for him, and the image started to warp as I realized it wasn't real."
She sprang to in dread and started running through her SoHo loft, calling out for him -- and very soon finding her flesh-and-blood husband, Lou DeMattai, calmly watching TV.
"Oh, thank God, you're alive!" she said.
What Tan didn't realize is that her experience about 18 months ago was perhaps only the strangest manifestation of what has since been diagnosed as late-stage Lyme disease -- an illness she believes she had contracted two years earlier but that continued to cause neurological damage, thanks to several misdiagnoses by doctors unfamiliar with or even hostile to the possibility.
Even now, after several months of treatment with antibiotics, Tan says her symptoms range from fatigue and memory loss to tinnitus (ringing in the ears) and olfactory hallucinations.
"I smelled dead rat briefly, but over a period of hours" and in different locations. "It's definitely weird."
Other symptoms have included hair loss, memory gaps, dropping first letters of words when writing by hand and replacing words with similar-sounding gibberish when speaking. Most recently she's experienced vertigo and expects that she'll continue to feel some joint pain "as a souvenir."
Tan's case dramatizes the growing, increasingly acrimonious division in the medical community over the proper treatment and diagnosis of Lyme disease, an illness caused by a bacterium, Borrelia burgdorferi, that enters the body via the bite of a deer tick.
There are essentially two armies in the Lyme war. The larger is the conventional team, supported by the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), the insurance industry, most organized medical groups and the majority of physicians. Members of this camp embrace a standardized set of symptoms, tests and treatment. As described on the CDC Web site (www.cdc.gov), Lyme disease starts with a tick bite and typically involves a "bull's-eye" rash -- a round, red mark surrounded by a paler ring and, often, a larger red ring -- accompanied by symptoms such as fever, fatigue, headache and aching muscles and joints. Early on, diagnosis is usually clinical, with a blood test preempted by symptoms and risk factors for exposure. Standard treatment is oral antibiotics, usually lasting for 10 days to a month depending on severity.
The CDC's Web site adds that some people with Lyme disease left untreated may experience "cognitive disorders, sleep disturbance, fatigue and personality changes," and that the condition may become severe, chronic and disabling, though is "rarely, if ever" fatal. The site says some patients may have recurrent symptoms and require repeated treatments for up to two years.
Then there's the opposing side, where other medical practitioners and patients' groups (and now, Tan) advocate a broader view of the disease that includes less predictable symptoms.
The Bethesda-based International Lyme and Associated Diseases Society (ILADS) contends that fewer than 50 percent of Lyme patients recall either a tick bite or a rash. They also claim the CDC's standard tests often fail to identify the disease.
Furthermore, they maintain that the CDC's standard course of antibiotic treatment is too brief to provide a lasting cure for many and may even leave the bacteria morphing and thriving inside the body, where they can wreak permanent neurological damage.
Gregory Bach, an ILADS board member with a family practice near Philadelphia, says the standard methods miss many people with Lyme, exposing them to harm. Among his clients, "we found that 50 to 90 percent of those tested [by the CDC's initial screening method and not diagnosed with Lyme] subsequently tested positive by other tests."
Paul Mead, an epidemiologist for the CDC, says "certainly this is an area of considerable controversy. There's no question that some in the community have taken exception to the criteria for diagnosis developed by expert panels . . . Testing is a complicated issue that we and others are looking into in further detail. It'd be nice if all the tests were subjected to rigorous validation," he says, but questions remain about the tests and lab analysis of those in the alternative camp.
The reality at this point "is that there is no answer," writes physician and Harvard Medical School assistant professor Jonathan A. Edlow in his new book, "Bull's-Eye: Unraveling the Medical Mystery of Lyme Disease" (Yale University Press, $29.95). "There is something that everyone agrees on: There are these patients who have classic symptoms. The earlier they're treated, the more likely they'll have a good outcome.
"Beyond that," he qualifies, "you have the divergence."
The No Luck Club
Tan's story illustrates how difficult diagnosis and treatment can be for someone whose case does not conform to the standard course. Tan didn't realize how tiny the tick could be -- about the size of the period at the end of this sentence -- and her rash never fit the standard description. As bothersome as her months of joint pain, occasional numbness, headaches and memory lapses had become by 2001, she accepted numerous medical opinions writing them off as signs of getting older. (She was 49.) But she couldn't laugh off the hallucinations and memory lapses.
Both Tan's father and her older brother had died from malignant brain tumors. Her mother had a brain tumor, too, though hers was benign; she died after having been diagnosed with Alzheimer's disease.
"I certainly considered [that I might be suffering from] Alzheimer's," Tan admits, "especially when I started having memory problems, and hiding mistakes that I'd made. I thought that must have been what it was like for my mother."
While her doctors quickly ruled out either those possibilities, they could not tell her what was wrong, even after two CAT scans, an MRI and a 48-hour hospitalized fast.
She broached the possibility of Lyme disease, but her doctor "told me three times he really didn't think I had Lyme, that we didn't have it in California, and that it was rare."
Tan reminded him that she and her husband split their time between the West Coast and New York, but the doctor was unmoved, she said. They left it at that.
A Battle Over Bites
Since Lyme disease was first detected in the United States in 1975, warnings about the risk of deer-tick bites have become routine public safety reminders each summer, along with tips about using sunscreen and avoiding rip tides at the beach. Though it may not be as in vogue as SARS, monkeypox or even White Nile disease, Lyme disease continues to proliferate, in its number of victims, geographic reach and medical controversy.
Cases have been reported in every state except Montana, with the overwhelming majority concentrated in the coastal Northeast and Mid-Atlantic states and in Minnesota, Wisconsin and northern California.
Of the 17,029 cases reported to the CDC in 2001, there were 608 in Maryland, 156 in Virginia and 17 in the District. The national total increased by more than 33 percent between 1991 and 2000.
The CDC adds that while reported cases of the disease have been increasing -- it theorizes that people are being exposed more often to ticks because tick populations are becoming both more dense and widely distributed -- "the disease [remains] greatly under-reported."
As the NIH details on its Web site (www.nih.gov), the particular spirochetes (spiral-shaped bacteria) associated with Lyme are notoriously difficult to diagnose and troublesome to treat in their later phases -- not only because they can change their appearance but because Lyme disease is similar to but separate from other diseases transmitted by different ticks. For diagnosis, the CDC recommends either of two blood tests for mid- or late-presenting cases: an ELISA (enzyme-linked immunosorbent assay) or IFA (indirect fluorescent antibody) test, followed by a Western Blot test.
The CDC's position is that the tests are reliable for late disease; ILADS counters that they miss fully half of late-stage cases.
Unfortunately, Edlow notes, both the ELISA and the Western Blot are imperfect, with frequent false negatives in early testing; in other words, they fail to identify many patients who have the disease. Since the production of antibodies, for uncertain reasons, is a little slower against Lyme than against many other infectious diseases, testing is not recommended within the first month of suspected exposure.
The ELISA, however, also routinely presents false positives -- identifying disease-free people as having Lyme. A random sampling of 100 people might -- due to bacteria as relatively benign as those that cause gingivitis -- suggest that five of them have Lyme, when in fact they have gum disease.
This is why the Western Blot, which produces fewer false positives, is used as confirmation.
Still another problem, though, is that there's disagreement about how to properly interpret a positive Western Blot test. While the test measures which antigens, or proteins, a patient's blood contains antibodies to, there remains technical disagreement over exactly which are significant and to what degree.
The CDC doesn't accept as relevant to a diagnosis of Lyme as many bands -- measures of antigens -- as private labs like IGeneX (a California lab run by Nick Harris, a doctor and ILADS board member) measure.
Shared criteria can also be interpreted differently. Even when the CDC and IGeneX agree on which bands are indicative, Edlow adds, a patient could test positively to the blot, "but have gotten [the disease] three years ago. That doesn't mean you have active infection, even though the antibodies remain positive."
"As with most things Lyme," Edlow says, "it depends on whose opinion you believe and how you define Lyme disease.
"There's legitimate controversy," he continues. "While we all prefer unambiguous results, that's just not possible the way these are used."
Life, Interrupted
Tan says she is "not terribly angry with any of my doctors" for having missed her diagnosis, though the roster included her primary care physician, an endocrinologist, a sleep-disorder specialist, two neurologists, a cardiologist and an orthopedic surgeon. "They were doing the best they could."
"I'm angry at the California Medical Association," she says, "because they have a board policy that recommends that all Lyme disease patients be treated with 10 days' antibiotics. I'm angry that they perpetuate the myth that it's rare, easily tested and easy to treat.
"I'm mad at insurance policies. . . . I'm a typical long-term Lyme patient who's seen a lot of doctors and had a lot of expensive tests done," Tan continues. While she could afford to spend more than $50,000 on diagnostic tests before learning what was ailing her, "I'm luckier than most -- there are many who have it far worse than I do."
"I know people who've lost homes, everything they have. I'm mad at the arbitrary saying that it's two weeks' treatment regardless of what's happening to you."
Nearly half a year before Tan's hallucinations began, she had returned home after a four-month, transoceanic book tour for her novel "The Bonesetter's Daughter." The persistent fatigue plaguing her before she started her itinerary had become life-consuming.
The day-long sleep that she first wrote off to jet lag didn't suffice; in the weeks that followed, she would sleep for 12 to 20 hours a day. Even more disturbing were the trembles that punctuated her sleep, waking her every two or three hours with what she called "Dolby Digital Syndrome" -- a feeling of constant vibration, like reverberation from a bass-heavy stereo.
When she shortly began waking each day with a sore neck, Tan bought a new buckwheat pillow. She tried another type, and still another, adding everything from Tempur-Pedic foam to a U-shaped neck roll.
As the weeks turned into months, the mental toll turned from an extended writer's block to an inability to maintain concentration or short-term memory.
"By page three or four [of her writing], I was unable to recall anything and had to begin anew," she says. At the dinner parties, "I often couldn't keep up with the repartee. . . . I nodded and laughed at the moments when everyone else did."
She decided to consult a psychiatrist for the first time in nearly 20 years; the doctor in turn suggested she also get a complete medical workup.
Finally, after comparing what she knew with what other patients reported on the ILADS Web site (www.ilads.org), Tan discovered Rafael Stricker, a Lyme specialist in San Francisco.
Stricker says Tan's "clinical symptoms and history were very suggestive: striking psychiatric problems and hallucinations, which you can see with Lyme disease."
He tested her with a Western Blot, and had it analyzed by IGeneX.
Stricker says Tan has tested positively on the Western Blot five times in a row. Among the 16 antigen bands that IGeneX identifies, her tests "have been pretty uniform," with positives for seven or eight bands each time. She has consistently tested positive for two of the three bands the CDC considers accurate indicators of Lyme, he says. He considers her diagnosis conclusive.
Stricker points out that as a public health agency, the CDC is interested mainly in surveillance and less in clinical applications of tests. "They're not as concerned in missing something, while I want a test that works for my particular patient's diagnosis."
The CDC's Mead confirms that the agency's analysis of the Western Blot requires a minimum of two of the three bands for a positive diagnosis, and that "this is a surveillance-case definition," which is useful for tracking the disease but may not be sufficient for a specific patient.
"It's a balancing act," he says. "It's true that to a certain extent [we] have different objectives. A clinician can treat, just in case, to help his patient. Nevertheless, there can be problems with over-treatment [with long-term, powerful antibiotics]. Overall it's not helpful to treat someone without a disease."
Stricker recently changed Tan's antibiotic medication to Flagyl (metronidazole) from doxycycline. He says recovery is usually progressive: "Usually when they feel better, they stay better, though there's possibility of relapse. Sometimes it requires months" of treatment for a complete cure, he says. "Sometimes it requires years."
That Tan's answer hadn't been discovered through the CDC's diagnostic protocols doesn't surprise Edlow. After all, he says, the Borrelia burgdorferi spirochetes "are weird bugs. Part of the way that they evade the immune system is to morph, or change themselves to appear like a new bug to the immune system. Or they don't. Or else patients have one or another or more than one at the same time. It gets kind of tricky."
Tan meanwhile argues that Lyme disease patients can't afford to wait for the science to inch its way forward. Her imagination still reels at the thought she was tested for both syphilis (after 29 years of marriage) and Lou Gehrig's disease before her doctors considered her for what the CDC terms "the leading cause of vector-borne infectious illness in the U.S."
"I've never met a single person in my lifetime who had ALS, but they tested me for that before Lyme disease," Tan adds. "It's not the way the medical community should be dealing with these very real problems that people are having."
Imputing her symptoms to age strikes her as no more logical.
"Did most baby boomers lose their hair in clumps? Did [they] read e-mails and respond at length, then have no memory of doing either? Were they amazed to read unfamiliar pages of stories they had evidently composed? . . . Did they become lost in their own neighborhoods, unable to recognize any familiar landmarks, too mortified to ask for help?"
As she concludes in an essay from her upcoming book "The Opposite of Fate" : "I am in this for the long haul, with treatment that will likely last for years. I won't feel safe until the scan of my brain and blood tests on my immune system return to normal, until the Western Blot is negative for Lyme disease, and my myriad symptoms are gone. . . . By having Lyme disease, I have automatically been drawn into the medical schism over both its diagnosis and treatment."
"I now know what is the greatest damage that Borrelia has caused: It is ignorance."•
Testing for Lyme
Q: HOW IS LYME DISEASE DIAGNOSED?A: Lyme is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Q: WHAT TESTS ARE AVAILABLE?
A: A variety of tests are available. Many doctors who are unfamiliar with Lyme disease may only use the test available in their local laboratory. In many cases this is the Lyme ELISA (EIA) or IFA, often-called “Titer Test”. These tests measure a patient's antibody, IgM and/or IgG, in response to exposure to the Lyme bacteria. By today's standards, these tests are not very sensitive.
The Western Blot tests (IgG and/or IgM) are much more sensitive and specific than the above titer tests. With the Western Blot, the laboratory can actually visualize the exact antibodies you are making to the Lyme bacteria. In some cases the laboratory may be able to say that your “picture of Lyme antibodies” is consistent with early disease, with persistent/recurrent disease or maybe even with long-term disease. Not all patients have antibodies at all times when they are tested. Antibodies are more commonly detected within the first year after infection, although reinfection may cause a significant increase in antibodies. At most, only 70% of patients have antibodies that are detectable by Western Blot testing.
PCR (Polymerase Chain Reaction) test detects the presence of the DNA of the Lyme bacteria. PCR tests have more sensitivity early in the disease before patients have received antibiotics. This is a relatively expensive test. The best specimen to test has not been defined. The test can be preformed on whole blood, serum, urine, synovial fluid and spinal fluid.
Q: WHICH TEST IS BEST?
A: Physicians are often asked what is the best test for Lyme disease? That is a difficult question because there is no one best test. Lyme disease is complicated. It may mimic or masquerade as arthritis, muscle aches, flu, cardiac disease, chronic fatigue, fibromyalgia, multiple sclerosis, autoimmune diseases such as lupus and rheumatoid arthritis, or other illnesses. Some of these diseases require multiple tests and so does Lyme. At a minimum, the IgM and IgG Western Blots for B. burgdorferi need to be ordered. If your physician suspects an autoimmune disease (i.e., systemic lupus or rheumatoid arthritis), an ANA or rheumatoid factor test may be needed.