posted
Yet another hack job by a widely read and respected newspaper!! We need to respond to this article with gusto:
There's No Neutral Ground in War Of Information About Lyme Disease
By Jason Feifer Special to The Washington Post Tuesday, May 15, 2007; Page HE01
Maryland Del. Karen S. Montgomery (D-Montgomery) knows Lyme disease can be a nasty foe: Both she and her husband have been through bouts of it. But when she introduced a bill in the legislature to distribute long-established treatment guidelines on the tick-borne infection to doctors statewide, she ran up against another adversary: Lyme advocacy groups.
Opponents dropped by her office in Annapolis to demand interviews. E-mails and faxes flooded in, expressing dissatisfaction with what the writers saw as shortcomings in the guidelines. The president of the Lyme Disease Association -- a group with 24 affiliates in 15 states -- testified against the bill, saying it would stymie treatment for what the group says is a chronic, painful and largely unrecognized form of the infection. Montgomery's measure was approved by the House of Delegates, but it died in the Senate last month.
As the incidence of Lyme disease has grown nationwide -- roughly 23,300 cases were recorded by the Centers for Disease Control and Prevention in 2005, up from about 17,000 in 2001 -- so has the political clout of Lyme activist groups, building on some people's frustration with standard treatments and the belief that many diffuse ailments, from arthritis and headaches to irritability and poor concentration, are actually symptoms of lingering, active Lyme disease. The activists have attacked legislation on state and federal levels, protested outside doctors' offices and lined up powerful allies, including Connecticut's attorney general. Last month they opened the Lyme Disease Research Center at Columbia University, made possible by $3 million the groups raised.
Fighting treatment guidelines of the type Montgomery favored has become one of the activists' primary goals. Those guidelines, crafted by the Infectious Diseases Society of America, a leading group of disease specialists, recommend against some treatments, such as long-term courses of antibiotics; the activists say such advice stops doctors from recognizing and treating "chronic Lyme."
The IDSA and other medical experts say there's no evidence that this chronic condition exists. Undeterred, the groups have produced their own guidelines -- including treatments that have not passed standard scientific tests or peer review -- and held conferences and published books about the disease. Leading health authorities including the CDC say some of the groups are promoting misleading and potentially dangerous information -- encouraging some doctors to misdiagnose patients and treat them with bogus remedies.
"We do indeed get calls from patients who are confused -- they hear one thing and then they read something else, and they don't quite know what to make of it," said Paul Mead, a medical epidemiologist at the CDC.
Researchers such as Gary Wormser, a Johns Hopkins-trained infectious diseases expert and lead author of the IDSA guidelines, say the activists have created an atmosphere of intimidation that inhibits research. "I don't think there has ever been another disease for which I have been attacked on the Internet like this. . . .They're not just content to just have two schools of thought, either. They kind of want to wipe out mainstream thinking and only have this school of thought."
Pat Smith, president of the Lyme Disease Association, said that such charges are unfounded and that it's mainstream experts who are keeping useful disease information from people who need it.
"We are patients, we are families of patients, and quite frankly we are tired of a small group of individuals dictating that patients should not be getting treatment for a disease that they have," she said. After feeling harassed for years, she added, patients were standing up for their rights and challenging disease experts, who are "getting a dose of their own medicine."
Lyme disease, first recognized by researchers in Old Lyme, Conn., in 1975, is a common infection readily treatable with a two- to four-week course of antibiotics, according to medical authorities, including the CDC. In 1998 the Food and Drug Administration approved a Lyme vaccine; the manufacturer withdrew it from the market in 2002, citing low sales.
Caused by the bacteria /Borrelia burgdorferi/, Lyme is typically transmitted through the bite of a deer tick. A bull's-eye rash often develops around the area of the bite, and a patient may develop flulike symptoms such as aching and fatigue. "A few patients, particularly those diagnosed with later stages of disease, may have persistent or recurrent symptoms," says the CDC, and a second four-week course of antibiotics may be helful. If left untreated, the disease can spread to joints, the heart and the nervous system, according to the agency.
Symptoms that persist long after treatment do not mean the disease is still active, say infectious disease experts. But they concede that some questions remain. "Here is where it gets confusing," wrote Wormser in an e-mail, "because about 10-20 percent of people without Lyme will have the same types of symptoms at any point in time. So the question arises: Are the symptoms that are present . . . post-Lyme related to having had Lyme, due to some other identifiable cause or the same as the symptoms (of unknown cause) found in the healthy population?. . . The good scientific studies cannot find evidence of residual Borrelia in such patients."
Some advocacy groups disagree, claiming the disease can often become a treatment-resistant chronic infection marked by painful muscle spasms, memory loss and chronic fatigue/./ Their ranks include some people who have never tested positive for the infection on recognized tests and can't account for their exposure . Some of those convinced they have chronic Lyme search out physicians that activist groups call "Lyme literate." Some of these doctors prescribe up to a year or more of antibiotics, claiming the standard short-term dose isn't always sufficient to kill the Lyme bacteria. Studies have shown that long-term antibiotic treatment is not effective, can lead to antibiotic resistance and can harm or even kill, according to CDC epidemiologist Paul Mead.
State medical boards have launched investigations of many so-called Lyme-literate doctors and have taken disciplinary action against some. In April 2006, for example, the North Carolina Medical Board charged a doctor with inappropriately diagnosing and treating 10 patients for Lyme disease. According to Quackwatch, an organization that tracks unscientific medical claims, there was no evidence for his Lyme diagnosis in any of the cases and no basis for his prescribing several months' treatment with intravenous antibiotics. He was allowed to continue practicing medicine, subject to restrictions.
Paul Beals, a family practitioner in the District, treats patients he has diagnosed with chronic Lyme with up to a year of antibiotics, monitoring them, he said, to make sure the medicine is not causing harm. He also instructs patients to boost their immune systems by making dietary and lifestyle changes, including more rest, no alcohol, and taking dietary supplements and fish oils.
"The CDC just doesn't recognize how resilient this bug is to short-term antibiotics," he said.
Beals has been placed on probation in Maryland and the District for performing tests and prescribing treatments, unrelated to Lyme disease, without medical indication.
Rob Marra, a personal trainer in Baltimore, uses alternative therapies including diet change (lots of vegetables; no coffee, sugar or grains) and nutritional supplements (including sea salts and magnesium) for what he said is a case of chronic Lyme that basically immobilized him for more than two years. He said he doesn't care that most doctors wouldn't approve of this treatment.
"The medical community has always resisted things that have tons of anecdotal evidence, but if they don't have a lab result or the research to back up what someone is actually saying, they'll say that they're crazy," he said.
Alternative Lyme therapies promoted on the Internet and elsewhere include:
/? Hyperbaric oxygen chamber./ The chamber, more commonly used to promote the healing of infected wounds, delivers oxygen in high doses. Supporters offer multiple reasons for its use, most notably that increased oxygen levels in the bloodstream will harm the Lyme bacteria and that oxygen helps stimulate the immune system. Wormser said there's little evidence that this treatment does anything to fight Lyme disease, but he said it isn't considered harmful, either.
/? Rife machine./ Proponents say the electromagnetic device, at one time marketed as a cancer cure, aims energy waves whose specific frequencies shatter the Lyme bacteria, in much the same way that a singer's voice can shatter glass. Attorneys general in Wisconsin and Minnesota have taken action against selllers of Rife machines, claiming they offer false promises. Quackwatch says the device has "no value for diagnosing or treating anything."
/? Dietary changes./ Some patients take large doses of salt along with vitamin C, believing this will dehydrate or hurt the Lyme bacteria. "It's one of those therapies that doesn't have biologic rationale. There's no reason that it should work," said John Bartlett, an infectious disease specialist at the Johns Hopkins University School of Medicine. Other patients eat an alkaline diet because they believe the food can raise the body's pH and make it inhospitable to the Lyme bacteria. Wormser said that it's extremely difficult to alter the body's pH and that any serious change could result in death.
/? Pulse dosing./ Instead of taking a course of antibiotics, some patients take long breaks between bouts of medication in the belief that it will make the drugs more effective. Wormser said that has not been proved and that pulse-dosing studies done for HIV showed that it hurt patients.
The Lyme patient advocacy movement gained momentum in 2006, when the Infectious Diseases Society of America updated its guidelines for identifying and treating Lyme disease. The society included a list of alternative therapies not recommended for treatment of Lyme -- including pulse dosing, use of the hyperbaric oxygen chamber and nutritional management -- and that became a rallying point for the groups.
They got a boost from Connecticut Attorney General Richard Blumenthal, who launched an investigation into the IDSA to see whether it had unlawfully ignored some information about the disease. That investigation is ongoing, according to Blumenthal's office.
Wormser, author of the IDSA guidelines, said that throughout medical history, groups of people have blamed diverse and medically unexplained symptoms on a wide variety of ailments. Instead of chronic Lyme, he said, it was once chronic Epstein-Barr, and another time it was chronic candida. The difference now, he said, is that the Lyme groups are so loud.
/Jason Feifer last wrote for Health about proposals to give tax breaks to organ donors. Comments:health@... ./
Posts: 364 | From California | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Boy this article sure smacks of McStupid.
Imagine the Washington Post using Quackwatch as it's main information source? Hello???
And who'd of thought WORMSER was Hopkins trained?
But I really like this quote...
"The IDSA and other medical experts say there's no evidence that this chronic condition exists."
And this really makes them sound clever..
"Researchers such as Gary Wormser, a Johns Hopkins-trained infectious diseases expert and lead author of the IDSA guidelines, say the activists have created an atmosphere of intimidation that inhibits research. "I don't think there has ever been another disease for which I have been attacked on the Internet like this. . . .They're not just content to just have two schools of thought, either. They kind of want to wipe out mainstream thinking and only have this school of thought."
You don't think McStupid and Wormser are BOTH reading Lyme disease chat groups, do you?
Anyhow...
PLEASE be respectful when writing.. and I KNOW it is hard to do.. but we NEED to be credible and sincere.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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By Megan S. Smith Special to The Washington Post Tuesday, May 15, 2007; Page HE04
If you head to your doctor's office with a suspected case of Lyme disease, this is what you might expect:
The doctor would first listen to your history of tick exposure and symptoms, such as muscular pains and headache. You'd then be checked for visible signs of infection, such as the telltale bull's-eye rash often, but not always, present in Lyme cases. If you had this rash, you probably would proceed straight to your local pharmacist for antibiotics, says the National Institute of Allergy and Infectious Diseases, and skip the next step: laboratory testing for Lyme.
The main problem with blood tests for Lyme disease, according to NIAID, is that they're not ideal in either their sensitivity (ability to detect the presence of infection) or their specificity (ability to differentiate Lyme from another infection).
What's more, because the tests detect only the presence of Lyme antibodies -- rather than the actual Lyme bacterium -- a positive response is not proof of an active infection; antibodies can remain in the blood long after an infection has ended, NIAID says.
There's more: Lyme bacteria incubate for anywhere from three to 30 days before causing infection; if you are tested soon after a tick bite, you may test negative because antibodies haven't had time to form.
As a result, "a history of having had a deer-tick bite, followed by the characteristic 'bull's-eye' lesion . . . with flulike symptoms is considered to be the most reliable diagnostic indicator of Lyme disease," according to NIAID.
To confirm a Lyme diagnosis, the Centers for Disease Control and Prevention recommends two blood tests performed by reputable labs: The first is an ELISA (enzyme-linked immunosorbent assay) to measure antibody levels -- a test considered highly sensitive to late-stage infection. The second test, the Western immunoblot assay, identifies antibodies particular to Lyme.
If a patient with Lyme-like symptoms for more than three weeks has both blood tests performed and both come back negative, "it's negative," according to CDC epidemiologist Paul Mead -- meaning the patient doesn't have Lyme.
The CDC and the Food and Drug Administration have warned about the proliferation of unapproved Lyme tests -- including blood and urine tests, some used by commercial labs.
Megan S. Smith is a Washington area freelance writer who conducted molecular genetics research for her master's in biology. Comments:[email protected].
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
They call this reporting!!! Does no reporter look beyond the shiny surface anymore????
Send responses.
In the August 2003 the Post did a front page story of Amy Tan in its Health section. My one son had just been diagnosed.
I might suggest they follow up with another Tan story.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Everytime I read articles like these two my spirit feels so trampled. It feeds my sense of hopelessness.
I will try to get a response out to these publications today or tomorrow.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I am hopeful the Post will receive volumes of mail regarding these articles......just like Annapolis received volumes of calls and faxes regarding Ms. Montgomery's bill that just needed some tweaking to make it acceptable.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Please respond. The Washington Post needs to know our feelings. The only good that comes from this article is that it makes us more determined to fight.
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
This Washington Post piece was so flagrantly biased that I'll never be able to look at any article in that paper the same way again.
It's not just about Lyme, my trust in their journalistic integrity is now gone whether it's Lyme or AIDS or Iraq - and I think that's another important message to get across to the editors.
Posts: 621 | From US | Registered: Jun 2006
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