Maryland Articles: BACK
WJZ Special Report: Lyme Disease Cases Are Skyrocketing in Maryland
Sally ThornerMay 3, 2007
Lyme disease is on the rise in Maryland. One grieving widow has advice that could help save a loved one’s life. Video.http://wjz.com/video/?id=27324@wjz.dayport.com
Lyme disease groups upset by new guidelines
Infectious disease group says only ‘bulls-eye rash’ good for clinical diagnosis
Steve Nery, Staff Writer
The Star Democrat
October 31, 2006CENTREVILLE — While National Lyme disease patient advocates are protesting the Infectious Disease Society of America’s new diagnostic and treatment guidelines, a group of Maryland advocates recently resigned from a state Lyme disease subcommittee largely because of the state’s support for the new strict guidelines.
The Infectious Disease Society of America’s (IDSA) new guidelines were published online earlier this month after being approved in late August. Many Lyme advocates had objected to the IDSA’s previous guidelines for being too strict and outdated, and are even less happy with the new set.
While erythema migrans, or the "bullseye rash" that appears on some patients, is enough for a clinical diagnosis, according to the new IDSA guidelines, nothing else is. The IDSA recommends blood testing, which has been found unreliable by many studies, while the Centers for Disease Control had been recommending clinical diagnosis.
Lyme disease is caused by the bacteria Borrelia burgdorferi, transmitted through tick bites. Less than half of all infected people recall the tick bite, according to the International Lyme and Associated Diseases Society (ILADS), and more than half never develop the bullseye rash.
ILADS President Dr. Raphael Stricker wrote a letter to Dr. Sherwood Gorbach, editor of "Clinical Infectious Diseases," which also published the IDSA guidelines, demanding a retraction of the article. Stricker wrote that the guidelines were written by a biased, one-sided group and threaten to harm patients and patient care, according to U.S. Newswire.
Pat Smith, president of the Lyme Disease Association (LDA), also issued a "call to action" for people affected by the disease. "Effectively banning clinical discretion and classes of drugs, alternative treatments and even supplements for any manifestation of Lyme" is reprehensible, Smith wrote in a letter to Lyme groups across the nation.
The LDA started a petition in protest, available on the group’s Web site at http://www.LymeDiseaseAssociation.org.
The new guidelines "take the place of a long-standing policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease," the petition reads.
In Maryland, four patient advocates resigned from the Department of Health and Mental Hygiene Lyme Disease Advisory Subcommittee in mid-October. Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland, said she was initially hopeful about the role patient advocates might play on the subcommittee, which met three times beginning in October 2005.
"We went in there with big hopes that we could educate and make a difference for people with Lyme, but right from the beginning, it didn’t look promising," Barnes said.
"We’re not quitting because we’re mad," she added. "We’re quitting because it’s a brick wall in front of us."
Barnes said she and other advocates hoped to get the state to support more "patient-friendly diagnostics."
Johns Hopkins University published a study last fall rating conventional Lyme disease testing methods — especially the common two-tiered blood test — as "unreliable," one of many studies questioning the accuracy of traditional diagnostic methods. Ironically, Hopkins has been criticized by Lyme groups for failing to adequately address the disease itself.
"Although the laboratory testing for diagnosis of Lyme disease is improving, the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests," the Hopkins report concluded. "Thus, clinical suspicion based upon well-recognized cardinal features of Lyme disease is still the most appropriate approach."
Barnes said there are better testing methods and treatment guidelines out there. IGeneX, a California testing lab, has developed alternative tests, while ILADS has diagnostic and treatment guidelines online at http://www.ilads.org.
Nearly 500 people showed up at Chesapeake College earlier this year when ILADS guidelines author Dr. Joseph Burrascano Jr. spoke at a Lyme disease symposium.
"It’s like using leeches instead of modern lab equipment to draw blood," Barnes said of the IDSA guidelines, adding she believes it will set them back 20 years.
There’s no money going to fight the disease, she added.
"A handful of chronically ill people can’t do it alone," she said.
Barnes said she is hopeful legislators will take steps to fight a growing regional problem. Lyme disease advocates have received support from some local politicians, including U.S. Rep. Wayne T. Gilchrest, R-Md.-1st.
Barnes said different people, including a man from an insurance company, showed up to the three DHMH subcommittee meetings. Other members included DHMH workers and veterinarian staff workers. Two of the four Lyme disease patient advocates were allowed to attend each subcommittee meeting.
Barnes said she continues to get several calls a day from people looking to get treated and people who haven’t been cured. She has spoken to people who have been denied treatment based on the new IDSA guidelines, she noted.
According to the IDSA, a doctor can administer a single dose of doxycycline after a tick bite as a preventative measure if the doctor can identify the tick as a certain species, if it is within 72 hours of tick removal and if the rate of Lyme infection among ticks in the area is higher than 20 percent.
Barnes said one pill is not enough for prevention, and questioned how many doctors can accurately identify ticks. She also said she believes the IDSA recommends doxycycline rather than other more effective drugs because it is much less expensive.
The IDSA guidelines also state that a few weeks of antibiotics produces a highly favorable outcome, and urges doctors not to administer alternative treatments, while Lyme support groups favor treatments on a case-by-case basis.
Abundance of ticks increases Lyme disease fears
Pamela Wood, Staff Writer
The Capital
Annapolis, MDPerched on blades of grass, or burrowed into the fur of mice and deer, they're waiting to latch on to a human for their next meal. Barely bigger than a freckle, ticks are out in force in summer months, and they're carrying nasty diseases they can pass on to humans.
Experts say both the abundance of ticks and the prevalence of Lyme disease are increasing in this area. "I'm seeing more ticks than I have in years," said Dr. Michael Raupp, an entomology professor at the University of Maryland, College Park. "Ticks are going to be on the way up."
And prime tick season - May through September - coincides with the prime time for humans to be picnicking, hiking, bird-watching and engaging in other outdoor activities where ticks thrive. That intersection of tick and human activity can lead to the transmission of illnesses such as Lyme disease, Borrelia burgdorferi.
When caught early, Lyme disease is often easily treated with a course of antibiotics. But it often can be a tricky illness that can be difficult to diagnose let alone treated. If it goes undetected, Lyme disease can spread, causing an array of troublesome symptoms, such as severe headaches, neck stiffness, shooting pains, dizziness and memory problems, according to the U.S. Centers for Disease Control and Prevention.
In rare cases, Lyme disease can even be fatal.
Last month, an Annapolis man, Christopher Peter Thomas, died from complications of Lyme disease. Mr. Thomas recorded sound for films and documentaries, and believed he contracted the illness while working on a set in Virginia.
"Maryland is definitely one of those states that always has Lyme," said Dr. Kelly Russo, a public health physician with the Anne Arundel County Department of Health. "In this area, physicians are aware of it." In 2005, there were 117 reported cases of Lyme Disease in Anne Arundel County, up from 74 in 2004 and 77 in 2003.
Doctors must report Lyme disease cases, but Dr. Russo said the number of cases should be taken "with a grain of salt" because the disease doesn't always show up on tests and not all suspected cases are reported.
Lyme disease usually is transmitted from animal to human through ticks, said Dr. Raupp, the entomologist. He said it's a common misconception that only deer carry Lyme disease and pass it on to ticks. Mice and small rodents are more likely reservoirs, he said. The tick that usually transmits Lyme disease is the black-legged tick, Ixodes scapularis. It is smaller than other ticks, sometimes as tiny as a little freckle.
Ticks are often found in fields or the transition area between a field or lawn and the woods. When in those areas, people should use a repellent including DEET and wear long sleeves and tuck their pants into their socks to prevent ticks from climbing aboard. Light clothing can help in spotting ticks.
And after spending time in tick habitat, it's a good idea to give a good once-over to search for ticks. Enlisting a friend, partner or parent can help in finding hard-to-spot ticks.
Dr. Raupp said he had a case of Lyme disease in the late 1980s, though he was lucky to spot it and get treated quickly. The telltale sign of Lyme disease is the bull's-eye rash around the bite site, sometimes accompanied by flu-like symptoms.
Any ticks should be removed gently with tweeze, Dr. Russo said. After a bite, it's a good idea to keep a lookout for symptoms, which can show up days or weeks later, she said.
The good news is that if a tick bites, it usually takes 24 hours or more for the tick to transmit Lyme disease, Dr. Russo said. Sometimes symptoms show up, even when a person has no idea they were even bitten by a tick.
That's what happened to Tony Caligiuri's then-8-year-old daughter, who didn't have any symptoms until she woke up one day in 2003 unable to walk. What he thought was a sprained ankle turned out to be Lyme disease and prompted Mr. Caligiuri into becoming an advocate for Lyme disease patients.
Mr. Caligiuri, who grew up in Annapolis and now lives in Centreville, is the chief of staff for U.S. Rep. Wayne T. Gilchrest. After his family's ordeal - his daughter has been symptom-free for about four months now - Mr. Caligiuri got Mr. Gilchrest to sponsor a federal bill to improve Lyme disease research.
The bill calls for more federal money for research, the creation of an advisory panel and a national education campaign. Mr. Caligiuri said he hopes more research will help end tests with false results, as well as address disagreements over how to treat Lyme disease. The federal government recommends a short course of antibiotics, though some patients and doctors believe longer courses of antibiotics are necessary to treat chronic cases.
Though the measure has more than 40 cosponsors, Mr. Caligiuri acknowledged Lyme disease can be a tough sell. There also have been attempts at the state level, including a failed measure to require insurance companies pay for longer courses of antibiotics.
Mr. Caligiuri said he hopes momentum will build toward getting government action on the disease. "We're getting so many calls from people in the same position," he said.
Lyme Disease Skyrockets In Maryland
Sally Thorner
(WJZ)ANNAPOLIS, MD
May 3, 2007As Lindsey Thomas reflects on the life of her husband Peter, she wonders what if? What if her husband's Lyme disease was not misdiagnosed for five years?
"Besides walking down this horrific road we were treated with the utmost lack of compassion," Lindsey said to WJZ's Sally Thorner. "He firmly believed that he had a severe case of Lyme."
Peter Thomas was an accomplished sound engineer who traveled the world making commercials and movies. In 2001 he was working in the hills of western Maryland on the set of the film "Gods and Generals" when his wife says he was infected.
"He told me every night. He would go into his hotel room and do head-to-toe tick checks," said Lindsey.
Peter soon developed an oval rash. At first he wasn't concerned because it looked nothing like the bulls-eye rash he believed was the disease's "smoking gun." Still, he took a Lyme blood test. The results came back negative. False negatives are common.
About a year later he started exhibiting night-sweats. Later he developed slurred speech, muscle pains and other symptoms synonymous with late-stage Lyme disease.
Peter was misdiagnosed with everything from ALS to arthritis. He was given various medications to treat these conditions, but they had no effect.
"In the spring of '05, Peter said I just don't feel right about this and I really want to get another Lyme test," said Lindsey. "I said let me do some research because I was not going to send him back to the same lab."
Peter flew to Colorado where six weeks later a doctor confirmed his worst suspicions. Within months, he died from a disease few think can be fatal. On his death certificate, one of the causes says Lyme.
"Ultimately his body was weak starting the medicine, and it made him weaker," said Lindsey. "He never could regain his strength."
Peter's story is a warning to others. For every detected case of Lyme, between four and twelve others go misdiagnosed.
Lyme disease specialist John Aucott says Lyme is a growing problem in Maryland.
"Maryland is clearly one of the top states for transmission of Lyme disease," he said to WJZ's Thorner from his office in Lutherville.
According to data obtained by WJZ 13, in 1990 there were only 238 confirmed cases in Maryland. By 2005 that number spiked 418% to more than 1,235 cases.
Lyme disease is named after the Connecticut town where it was discovered in the 1970s. It is caused by bacteria that is typically transmitted to humans by deer ticks. The illness is rarely fatal. In fact, if caught early it's very treatable with oral antibiotics. However, according to the Center for Disease Control, if left untreated Lyme can lead to major chronic problems including severe arthritis, fatigue, fever, headaches and muscle pains.
Symptoms of early stage Lyme disease include fever, headache, weakness and a skin rash. If you ever notice a localized rash, you are urged to contact a physician. Symptoms of late-stage Lyme include stiff neck, irregular heart beat, hearing and vision problems and paralysis.
The virus trademark is the bullseye-shaped rash, which usually occurs within a month of the initial bite. But only 68% of people develop the bullseye. However, only one in two people bit by an infected tick will contract the disease. For all that is known about the illness a lot remains unclear.
"The one thing we know is the sooner you get the tick off the less likely it is to transmit Lyme disease," said Aucott. "It's an area where we need to do a lot of research because one thing I can tell you is that it's not going away."
Neither does the pain from losing a loved one. It has been one year since Peter died. Now Lindsey and her two children are trying to move on.
"My husband, the father of my children, was taken away from us. But life presents you very difficult hurdles and you have to figure out a way to overcome them and move on."
(© MMVII, CBS Broadcasting Inc. All Rights Reserved.)
© 2006 The National Lyme Disease Memorial Park Project
