Lyme Disease
Friday, April 1, 2005 online report at North Shore by Julie Nagazina/ Correspondent:
For most people, ticks are just an annoying part of life in the North Shore. For some residents, however, they have become the cause of daily nightmares, believing that Lyme disease and other tick-borne illnesses have left them chronically ill and debilitated. They also insist they became much sicker than they should have because medical tests and local physicians failed to make accurate diagnoses.
To make matters worse, they say that even after they were diagnosed, it was difficult for them to find a local doctor to prescribe the long-term antibiotic therapy that they believed was necessary to relieve their symptoms. And when they finally succeeded in finding a source for medication, their health insurance would not cover the costs.
After hearing enough such complaints, state Rep. Brad Hill felt compelled to respond by hosting a an informational forum on Lyme and other tick-borne diseases last week at Ipswich Town Hall.
At that forum, Dr. Alfred DeMaria Jr., director of the Bureau of Communicable Disease Control for the Massachusetts Department of Health, explained that Lyme disease is a bacterial illness that is typically transmitted to humans by deer tick bites.
DeMaria emphasized prevention. He suggested putting buffer zones of gravel or mulch between woods and yards, regularly checking for ticks on one's body, using repellents and wearing long sleeves and pants.
According to DeMaria, not everyone gets the classic bull's-eye rash and warned people to take seriously any rashes associated with aches and fever.
He also mentioned other diseases that can be spread by tick bites. They have exotic and intimidating names likeBabesiosis andErlichiosis,and are caused by microscopic organisms or bacteria. They exacerbate the symptoms of Lyme, as well as making diagnosis and treatment more complicated.
"We are trying to raise awareness statewide," said DeMaria, who recommended starting a North Shore Lyme disease task force.
More of the same
The information conveyed by DeMaria was helpful, but most of it was not news to most audience members. They, or members of their families, had suffered from Lyme disease but had not found the help they needed from the local medical community.
When forced to look elsewhere for treatment, they turned to Web sites, word of mouth, advice from support group members, and out-of-state physicians and laboratories. Most of the forum was devoted to letting such people share their often heart-breaking experiences.
Susan Mercurio, of Hamilton, told a frightening, but not unusual story. Five years ago, neurologists told her she had multiple sclerosis. Treatment with steroids resulted in loss of vision. It wasn't until her third test, at a new lab, that she was diagnosed with Lyme disease.
After more than a year of treatment with intravenous antibiotics, Mercurio's eyesight has returned to the point where she can drive again. However, in order for her to receive the treatment she believes she needs, she says she must go to New York and pay out of pocket.
The need for better diagnostic testing was echoed by several attendees at the forum. Some asserted that high-quality testing is available, but is not being used by local physicians.
Kay Lyon, of Wenham, described her daughter as being "close to death," even after treatment by 16 different physicians. Lyon made the diagnosis of Lyme disease herself and, in hope of helping others avoid what her family went through, maintains a Web site - www.lymesite.com - on the topic.
Speakers at the forum advocated using clinical symptoms to diagnose Lyme. Unfortunately, the Lyme bacteria can take up residence in many different parts of the body, causing a terrifying array of symptoms.
Some of the signs of Lyme disease listed on Lyon's Web site include: fever, rashes, fatigue, weight change, chest pain, vision problems, facial twitching, nausea, stomach problems, muscle and joint pain, headaches, seizures and psychological problems.
This plethora of possible symptoms increases the likelihood of misdiagnosis. Literature brought to the forum described Lyme disease being mistaken for Lou Gehrig's disease, Parkinson's disease, multiple sclerosis, chronic fatigue syndrome, schizophrenia and many other problems.
Wenham's Ginny Stephenson spoke of the need for "physicians' forums, not public forums."
"The range of symptoms is so broad," she added, "to know Lyme is to know medicine."
Wrong calls
Misdiagnosis can worsen the effects of Lyme disease. James Balesteri, of Rowley, a chronic Lyme sufferer, described how steroids given to treat other diseases can begin an "amazingly destructive process."
According to Balesteri, "steroids enter the bloodstream and disable the killer cells that stop the pathogens that move through the body."
Some of the most disturbing information at the forum was presented by Michele Holland, of Ipswich. Three years ago, when her son was 5 years old, he became afflicted with violent motor ticks and twitches.
Doctors told Holland her son's condition would probably pass with the onset of puberty and that she should just "live with it."
Holland learned of other cases nearby where people shared her son's symptoms. Children's Hospital carried out a "cluster study" in the area of her neighborhood, identifying 13 children and nine adults who'd suffered from the twitches.
Holland's son's symptoms began to improve after he received antibiotics for another ailment, leading her to conclude that Lyme disease was the cause of her son's medical problems.
"After all," said Holland, "the only thing [the subjects of the study] have in common is the mosquitoes, the ticks and the Ipswich River."
Reports like the Ipswich cluster study touch a nerve because children are affected. The involvement of children makes Hamilton's Paula Gesmundo's story especially sad. All five of Gesmundo's children are infected with Lyme and other tick-borne diseases. She believes she passed the illnesses on to her children during pregnancy.
Before treatment, Gesmundo's family suffered from migraines, rashes, joint aches, fevers, vision loss and problems with schoolwork. She now spends "thousands of dollars" each month on antibiotics and other medications.
Gesmundo speculated that more aggressive treatment of tick-borne diseases might reduce the number of children who need Special Education services.
New York physician Leo Shea described how he visits patients in Massachusetts because there are no qualified clinical "Lyme-literate" neuro-psychologists here. He suggested putting Lyme disease warnings on hunting and fishing licenses, including more prevention information on state Web sites, and making a Lyme disease course a mandatory part of continuing medical education.
Shea asserted "The significance of tick-borne diseases is undervalued by a factor of 10," and that such diseases are "the fastest growing in the U.S."
State Rep. Brad Hill assured his constituents that he plans to get more state officials involved and let them hear peoples' stories. He made a vow to forum attendees to "start a dialogue that will not end today."
http://www2.townonline.com/lynnfield/localRegional/view.bg?articleid=216914
For most people, ticks are just an annoying part of life in the North Shore. For some residents, however, they have become the cause of daily nightmares, believing that Lyme disease and other tick-borne illnesses have left them chronically ill and debilitated. They also insist they became much sicker than they should have because medical tests and local physicians failed to make accurate diagnoses.
To make matters worse, they say that even after they were diagnosed, it was difficult for them to find a local doctor to prescribe the long-term antibiotic therapy that they believed was necessary to relieve their symptoms. And when they finally succeeded in finding a source for medication, their health insurance would not cover the costs.
After hearing enough such complaints, state Rep. Brad Hill felt compelled to respond by hosting a an informational forum on Lyme and other tick-borne diseases last week at Ipswich Town Hall.
At that forum, Dr. Alfred DeMaria Jr., director of the Bureau of Communicable Disease Control for the Massachusetts Department of Health, explained that Lyme disease is a bacterial illness that is typically transmitted to humans by deer tick bites.
DeMaria emphasized prevention. He suggested putting buffer zones of gravel or mulch between woods and yards, regularly checking for ticks on one's body, using repellents and wearing long sleeves and pants.
According to DeMaria, not everyone gets the classic bull's-eye rash and warned people to take seriously any rashes associated with aches and fever.
He also mentioned other diseases that can be spread by tick bites. They have exotic and intimidating names likeBabesiosis andErlichiosis,and are caused by microscopic organisms or bacteria. They exacerbate the symptoms of Lyme, as well as making diagnosis and treatment more complicated.
"We are trying to raise awareness statewide," said DeMaria, who recommended starting a North Shore Lyme disease task force.
More of the same
The information conveyed by DeMaria was helpful, but most of it was not news to most audience members. They, or members of their families, had suffered from Lyme disease but had not found the help they needed from the local medical community.
When forced to look elsewhere for treatment, they turned to Web sites, word of mouth, advice from support group members, and out-of-state physicians and laboratories. Most of the forum was devoted to letting such people share their often heart-breaking experiences.
Susan Mercurio, of Hamilton, told a frightening, but not unusual story. Five years ago, neurologists told her she had multiple sclerosis. Treatment with steroids resulted in loss of vision. It wasn't until her third test, at a new lab, that she was diagnosed with Lyme disease.
After more than a year of treatment with intravenous antibiotics, Mercurio's eyesight has returned to the point where she can drive again. However, in order for her to receive the treatment she believes she needs, she says she must go to New York and pay out of pocket.
The need for better diagnostic testing was echoed by several attendees at the forum. Some asserted that high-quality testing is available, but is not being used by local physicians.
Kay Lyon, of Wenham, described her daughter as being "close to death," even after treatment by 16 different physicians. Lyon made the diagnosis of Lyme disease herself and, in hope of helping others avoid what her family went through, maintains a Web site - www.lymesite.com - on the topic.
Speakers at the forum advocated using clinical symptoms to diagnose Lyme. Unfortunately, the Lyme bacteria can take up residence in many different parts of the body, causing a terrifying array of symptoms.
Some of the signs of Lyme disease listed on Lyon's Web site include: fever, rashes, fatigue, weight change, chest pain, vision problems, facial twitching, nausea, stomach problems, muscle and joint pain, headaches, seizures and psychological problems.
This plethora of possible symptoms increases the likelihood of misdiagnosis. Literature brought to the forum described Lyme disease being mistaken for Lou Gehrig's disease, Parkinson's disease, multiple sclerosis, chronic fatigue syndrome, schizophrenia and many other problems.
Wenham's Ginny Stephenson spoke of the need for "physicians' forums, not public forums."
"The range of symptoms is so broad," she added, "to know Lyme is to know medicine."
Wrong calls
Misdiagnosis can worsen the effects of Lyme disease. James Balesteri, of Rowley, a chronic Lyme sufferer, described how steroids given to treat other diseases can begin an "amazingly destructive process."
According to Balesteri, "steroids enter the bloodstream and disable the killer cells that stop the pathogens that move through the body."
Some of the most disturbing information at the forum was presented by Michele Holland, of Ipswich. Three years ago, when her son was 5 years old, he became afflicted with violent motor ticks and twitches.
Doctors told Holland her son's condition would probably pass with the onset of puberty and that she should just "live with it."
Holland learned of other cases nearby where people shared her son's symptoms. Children's Hospital carried out a "cluster study" in the area of her neighborhood, identifying 13 children and nine adults who'd suffered from the twitches.
Holland's son's symptoms began to improve after he received antibiotics for another ailment, leading her to conclude that Lyme disease was the cause of her son's medical problems.
"After all," said Holland, "the only thing [the subjects of the study] have in common is the mosquitoes, the ticks and the Ipswich River."
Reports like the Ipswich cluster study touch a nerve because children are affected. The involvement of children makes Hamilton's Paula Gesmundo's story especially sad. All five of Gesmundo's children are infected with Lyme and other tick-borne diseases. She believes she passed the illnesses on to her children during pregnancy.
Before treatment, Gesmundo's family suffered from migraines, rashes, joint aches, fevers, vision loss and problems with schoolwork. She now spends "thousands of dollars" each month on antibiotics and other medications.
Gesmundo speculated that more aggressive treatment of tick-borne diseases might reduce the number of children who need Special Education services.
New York physician Leo Shea described how he visits patients in Massachusetts because there are no qualified clinical "Lyme-literate" neuro-psychologists here. He suggested putting Lyme disease warnings on hunting and fishing licenses, including more prevention information on state Web sites, and making a Lyme disease course a mandatory part of continuing medical education.
Shea asserted "The significance of tick-borne diseases is undervalued by a factor of 10," and that such diseases are "the fastest growing in the U.S."
State Rep. Brad Hill assured his constituents that he plans to get more state officials involved and let them hear peoples' stories. He made a vow to forum attendees to "start a dialogue that will not end today."
http://www2.townonline.com/lynnfield/localRegional/view.bg?articleid=216914
posted by Ingrid J. Jones at Saturday, April 02, 2005
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