Living with Lyme Experts, sufferers encourage residents to vigilantly follow prevention tips to avoid ticks and their bacteria Wednesday, May 24, 2006 By Natalie Gienger
Staff Writer
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Centers for Disease Control and Prevention Black-legged ticks (I. scapularis) are known to transmit Lyme disease, or the bacteria borrelia burgdorferi, according to the Centers for Disease Control and Prevention, to humans and animals when they slowly feed in the nutrient-rich host blood. If the disease goes untreated for more than a month after the bite, it may move into the bones, joints, muscles and organs of the infected individual or animal.
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But that September the Cobb Island resident and plumber began to experience what he thought was tendonitis in his left knee. The discomfort grew, and along with it he developed a fever and swollen ankle. A few days after seeing his orthopedist, the swollen ankle felt like it was on fire. ``It was so warm that the heat penetrated my sock and my boot,'' recalled Todd, who at first had chalked up the discomfort to excessive use at work.
But as other parts of his body became inflamed and his joint pain increased, Todd started researching his symptoms.
``I thought, `I must have Lyme disease,''' he said of the conclusion he came to when no other ailments seemed to fit.
That's when he made an appointment to see his physician and shared his suspicions with him.
``He denied it right there even before he had a blood test,'' said Todd, recalling his frustration.
Despite the fact that his ailment seemed to be rapidly moving into his tendons, muscles, bones and joints -- the common course when the disease goes untreated -- all of Todd's tests, including a blood test for Lyme, came back negative and he became increasingly concerned.
Still, even though he hadn't experienced the rash that is indicative of Lyme and couldn't recall a tick bite, Todd refused to rule out the possibility of having contracted the disease, which is caused by the bacteria borrelia burgdorferi after the bite of an infected blacklegged tick, according to the Centers for Disease Control and Prevention Web site.
Not all Lyme sufferers notice a tick bite, said Monte Skall, executive director of the National Capital Lyme Disease Association. And only about 60 percent of people present the rash.
In many of those cases, misdiagnosis or no diagnosis is common, particularly in people who don't connect the early symptoms -- which include fatigue, a flu-like feeling, fever and headache. Others show no original signs and don't present symptoms until months or years later when their immune systems can no longer handle the bacteria.
Then there are the difficulties with testing for the disease.
``Several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated,'' according to the CDC Web site. ``Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early [Lyme] disease, but they are quite reliable for diagnosing later stages of disease.''
``There is no 100 percent test; most tests are 60 percent reliable,'' explained Skall, who noted that most doctors in the metro area use the Elisa test, an antibody response test.
It is not accurate enough, she said, adding that she believes a DNA test is the best way to be sure if someone has Lyme within the first month after it has been contracted -- when the disease is most successfully treated and has done the least damage.
Treating the disease can be as simple as using an antibiotic if the bacteria is found while it is still in the blood stream, Todd said. But it becomes extremely difficult once it has moved out of the bloodstream and into the body's organs, bones, muscles and⁄or tissues.
``[Lyme] stays in the blood system for a very short period of time,'' Skall noted.
``It's a spirochetal disease,'' she explained, adding that it is similar to syphilis and can go dormant while being treated, but is known to come back after the treatment is stopped.
Because of the lack of accurate testing and a variety of other reasons, including doctors or patients who ignore the signs, some people believe the number of cases of Lyme disease is vastly underreported -- even by as much as 90 percent.
``A lot of cases are missed,'' explained Skall, who has had Lyme disease for 15 years and was also misdiagnosed. ``The average time period for [accurate] diagnosis is four years.''
Because he didn't have the obvious signs, Todd was treated for rheumatoid arthritis -- something he believes happens often. At one point, it was even suggested that he might have Chrohn's disease.
He wouldn't be properly diagnosed and begin treatment for Lyme disease until he had lost his job, seen seven different doctors, including specialists at Johns Hopkins, and spent thousands of dollars on medical appointments and tests -- some nine months after he noticed the first symptoms.
During this period, both of his parents died. But because the pain had become all-consuming, it occupied almost every waking thought Todd had.
``It was all I could do to carry my father's casket,'' he said.
``How long will I have to be in pain before I die?'' Todd remembered thinking.
Finally, a friend recommended a Lyme specialist in Baltimore. But he hit another bump in the road when the doctor couldn't treat him because he was too sick.
``He said, `We've got to get your immune system up,''' Todd recalled. He went on a four-week diet where he cut out all foods with sugar and cleansed his system by taking vitamins and eating salads and a variety of other low-carbohydrate vegetables.
After getting his immune system back up, it took some time for the doctor and Todd to find the right course of treatment going back and forth between Ceftin and a combination of Zithromax and penicillin before using the more aggressive treatment of a Rocephin intravenous drip.
Today, Todd said, he is doing relatively well, compared to others with the disease. More advanced cases of Lyme often include complications like hearing and cognitive loss, onset of arthritis, peripheral neuropathy, depression and thyroid problems, and sometimes death.
``Everything is a result of the [Lyme disease],'' Todd said, adding that at times he has even experienced difficulty speaking.
And some people, Skall said, are never diagnosed at all.
After autopsies, ``a lot of these people turn up positive for [borrelia burgdorferi,]'' she said. ``You have to wonder ... if it isn't the cause for a lot of these autoimmune diseases.''
With what he believes is an ``explosion'' of Lyme disease waiting to happen, Todd, a member of the National Capital Lyme Disease Association support group, has become an advocate for prevention and educating the public about the potentially fatal disease.
The Maryland Department of Health and Mental Hygiene isn't in agreement with the belief that cases of the disease are underreported or about to skyrocket, but it is taking into consideration state organizations that are concerned about the disease and its treatment. As a result, it established the Maryland Lyme Disease Advisory Subcommittee last fall to look more closely at Lyme disease, explained Kim Mitchell, coordinator for the subcommittee and chief of the division of rabies and vector-born diseases at MDHMH.
``We're seeing somewhat of an increase for the state as a whole,'' said Jeff Roache, chief of the center for clinical epidemiology at MDHMH.
From 2003 to 2004, the reported cases of Lyme disease in Maryland rose by 200, according to MDHMH's Community Health Administration Web site. In Charles County, the numbers also rose with 2004 showing a high of 31 cases reported (www.edcp.org⁄vet_med⁄lyme_disease.html). The numbers for 2005 have not been posted.
``It's thought that there may be other ticks that carry Lyme disease,'' Roache added. And some ticks carry other diseases, such as Rocky Mountain Spotted Fever.
Currently, the subcommittee is examining the state's existing programs for the disease. Members -- including subcommittee Chairman John P. Krick, Pamela Andrews, Howard Beardsley, Bob Beyer, Dr. James Campbell, Dr. Paul Fleury, Guy Hohenhaus, Cyrus Lesser, Dr. Elizabeth Lucas, Mitchell, Mary Mu�oz, Lisa DesBoine-Murray, Robert Myers, Frances Phillips, Roche, Dr. Kelly Russo, Mary Ellen Setting, Eric Sullivan, Jay Wolfenden, Dr. Virginia Bailey, Dr. David Blythe, Janice Bolten and Sally Duran -- have been divided into groups and are in the beginning stages of addressing and improving diagnostic best practices, treatment guidelines, surveillance, ecology, public awareness and provider education and public policy considerations as they relate to Lyme.
``Lyme disease certainly does have a big impact on the public health,'' Mitchell said.
Whatever the subcommittee's long-term findings may be, MDHMH is recommending that people take precautions for Lyme seriously now.
``There are certain steps that individuals can take to prevent [Lyme disease],'' she said.
``Being aware, education is key,'' added Skall, who if she had known what the rash she had on her leg meant would have sought immediate treatment.
While the majority of cases for Lyme in Maryland are reported in the summer months, ``ticks are around 365 days a year,'' Todd warned, adding that a tick with borrelia burgdorferi can be in a front yard just as easily as a 300-acre forest. ``Don't let Lyme change your life; don't let Lyme ruin your life.''
``The average person doesn't think that an insect can cause this kind of damage,'' Skall said.
But ticks can and do pass along Lyme after contracting the disease from mice that are infected. To increase the chances for prevention or early treatment, people need to consistently check their children, their animals and themselves for ticks and tick bites, as well as follow the other guidelines recommended for Lyme disease.
``Look for the smallest little bug bite,'' noted Todd, who said that he is most afraid for children.
If residents do find a bite mark, a tick or suspect a tick bite, they should see their doctor immediately. If their doctor doesn't take them seriously, ``see an infectious disease doctor,'' he said. ``If I was put on an IV drip [within the first month of being bitten], I'd be fine today.''
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Beverly
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Good article, thanks for posting it. Posts: 6641 | From Michigan | Registered: Jun 2001
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