Post by LymeEnigma on Jan 10, 2009 19:21:53 GMT -8
On a lot of online Lyme disease discussion boards, Gail Sheffer said, members follow a strict protocol when it comes to recommending doctors.
They will use the doctor's initials and identify the town that he or she is from. They'll use the doctor's name in e-mails to individuals. But they will not post the doctor's name online, where a casual Internet browser can find it.
The reason, Sheffer said, is that the Lyme disease community is afraid those doctors will face harassment from insurers or even from their peers.
Many people in Sheffer's group claim they suffer from a chronic condition brought on by the disease, which they and some doctors say requires long-term treatment.
Yet many medical professionals caution about treatment that can do more harm than good, for the sake of treating a medical condition whose very existence they consider debatable.
The disagreement comes down to two basic schools of thought regarding Lyme disease, according to Dr. John Manzella, an infectious disease expert at Wellspan.
"There's no question they know what causes it, what transmits it and how to treat it," Manzella said. "The debate is from the treatment that says you need to treat for weeks and weeks and months and months for chronic, non-specific symptoms."
Sheffer, of Windsor Township, is president of the York Lyme Disease Support Group, which meets once a month. She said the number of group members has increased in recent years, and now numbers about 120.
On the surface, their mission is as uncomplicated as their name. They're a bunch of people with Lyme disease helping each other out.
A cluster of cases around the town of Lyme, Conn., led to identification of the condition known as Lyme disease in 1975. It's caused by a bacterium called Borrelia burgdorferi, spread by the black-legged deer tick.
Members of Sheffer's group look out for each other in a number of ways. They help line people up with human care agencies, pass the hat for members in
Gail Sheffer heads a Lyme disease support group that tries to help with results of the disease, which go beyond medical issues. It s really a strain on families and marriages, Sheffer said. (Daily Record/Sunday News -- Paul Kuehnel)
dire need of help or simply provide emotional support to the people who believe they have a chronic condition and can't get treatment.
"It's really a strain on families and marriages," Sheffer said.
Members are protective of doctors who provide a certain type of treatment. The main differences between those "Lyme doctors" and many mainstream health care providers is twofold, Sheffer said.
First of all, they're willing to treat for Lyme disease based on a description of symptoms, rather than a positive test.
Sheffer said that distinction is crucial, because of the difficulty many Lyme disease patients have faced in getting a diagnosis in the first place. The bacteria causing the condition can nest in tissues or cartilage, eluding a blood test but showing up again to incapacitate their hosts, Sheffer said.
Patients frequently complain that they go years before getting a positive diagnosis, she said.
The other main difference is that the Lyme doctors are willing to prescribe the intensive, long-term treatment with antibiotics that they believe is necessary to get the condition under control.
They will use the doctor's initials and identify the town that he or she is from. They'll use the doctor's name in e-mails to individuals. But they will not post the doctor's name online, where a casual Internet browser can find it.
The reason, Sheffer said, is that the Lyme disease community is afraid those doctors will face harassment from insurers or even from their peers.
Many people in Sheffer's group claim they suffer from a chronic condition brought on by the disease, which they and some doctors say requires long-term treatment.
Yet many medical professionals caution about treatment that can do more harm than good, for the sake of treating a medical condition whose very existence they consider debatable.
The disagreement comes down to two basic schools of thought regarding Lyme disease, according to Dr. John Manzella, an infectious disease expert at Wellspan.
"There's no question they know what causes it, what transmits it and how to treat it," Manzella said. "The debate is from the treatment that says you need to treat for weeks and weeks and months and months for chronic, non-specific symptoms."
Sheffer, of Windsor Township, is president of the York Lyme Disease Support Group, which meets once a month. She said the number of group members has increased in recent years, and now numbers about 120.
On the surface, their mission is as uncomplicated as their name. They're a bunch of people with Lyme disease helping each other out.
A cluster of cases around the town of Lyme, Conn., led to identification of the condition known as Lyme disease in 1975. It's caused by a bacterium called Borrelia burgdorferi, spread by the black-legged deer tick.
Members of Sheffer's group look out for each other in a number of ways. They help line people up with human care agencies, pass the hat for members in
Gail Sheffer heads a Lyme disease support group that tries to help with results of the disease, which go beyond medical issues. It s really a strain on families and marriages, Sheffer said. (Daily Record/Sunday News -- Paul Kuehnel)
dire need of help or simply provide emotional support to the people who believe they have a chronic condition and can't get treatment.
"It's really a strain on families and marriages," Sheffer said.
Members are protective of doctors who provide a certain type of treatment. The main differences between those "Lyme doctors" and many mainstream health care providers is twofold, Sheffer said.
First of all, they're willing to treat for Lyme disease based on a description of symptoms, rather than a positive test.
Sheffer said that distinction is crucial, because of the difficulty many Lyme disease patients have faced in getting a diagnosis in the first place. The bacteria causing the condition can nest in tissues or cartilage, eluding a blood test but showing up again to incapacitate their hosts, Sheffer said.
Patients frequently complain that they go years before getting a positive diagnosis, she said.
The other main difference is that the Lyme doctors are willing to prescribe the intensive, long-term treatment with antibiotics that they believe is necessary to get the condition under control.
Read the full article: ydr.inyork.com/ci_11362868
Please note that this article was released by the LDA.