Hello my friends,
Below is a great article from Eugene(Oregon) Weekly(http://eugeneweekly.com/2010/02/18/views3.html) written by Phyliss Mervine. I hope you will take time and read it. I am sure most of you will agree with it and can add your testimony to the problems of having Lyme disease treated. It is about time, people have recognized that the existing guidelines to be done away with and new ones instituted.
Be well,
Richard
Flawed Guidelines
Lyme disease treatment options limited by conflicts and questionable science
By Phyllis Mervine
In her Viewpoint Jan. 28, Dr. Sarah Henderson aligns herself with the flawed Lyme disease guidelines of the Infectious Diseases Society of America (IDSA). The IDSA treatment guidelines are highly restrictive, ineffective, and leave seriously ill patients without effective treatment options. The IDSA guidelines panel which developed the guidelines had serious and significant commercial conflicts of interest with vaccine manufacturers, Lyme diagnostic kit distributors, and insurance companies. The panel did not consider the interests of patients and their treating physicians, with the result that it placed commercial interests above quality of patient care.
The conflicts were so egregious that Connecticut Attorney General Richard Blumenthal launched an antitrust investigation into the IDSA guideline development process. In May 2008, the AG announced a settlement with the IDSA. In a scathing indictment, he concluded that the guidelines process had lacked important safeguards:
• Several of the most powerful panelists held undisclosed financial interests;
• IDSA failed to follow its own procedures for appointing the panel chair and members;
• The panel refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease and blocked appointment of scientists and physicians with divergent views on chronic Lyme.
Under pressure of the investigation, the IDSA entered into an antitrust settlement agreement with the AG. The settlement agreement forced the IDSA to reconstitute a new panel free of conflicts of interest to re-evaluate its guidelines in a public hearing held on July 30, 2009. The panel is expected to make a decision soon. The settlement requires the panel to consider scientific research the prior panel had ignored and to consider divergent viewpoints. The hearing and the scientific evidence submission of the International Lyme and Associated Diseases Society (ILADS) which included approximately 300 pages of analysis and more than 1,300 pages of peer reviewed scientific evidence disputing the IDSA guidelines recommendations can be viewed at HYPERLINK "http://www.ilads.org/"www.ilads.org.
The IDSA guidelines severely restrict clinical judgment and deny patients access to treatment options. Despite the IDSA claims that its guidelines are “voluntary,” medical boards, insurers, hospitals, schools and even child custody agencies regard them as mandatory and IDSA members enforce the guidelines in unprofessional conduct actions against physicians who fail to comply. The IDSA uses the guidelines as a sword to drive its competitors out of business for non-compliance.
The hardship caused to patients by these guidelines is severe. A recent CALDA survey of more than 3,600 people with Lyme disease found that the average patient waited over four years, seeing multiple doctors, before being diagnosed and one third waited more than six years to be properly diagnosed. In addition:
• 90 percent had difficulty or extreme difficulty finding a knowledgeable physician to treat Lyme disease. About 51 percent had traveled more than 100 miles to obtain treatment, and 53 percent had been forced to travel out of state to obtain care.
• 54 percent had been treated and failed treatment under IDSA protocols. A resounding 81 percent stated that they would not consider being treated under IDSA protocols.
• More than 60 percent of respondents who failed to improve under IDSA protocols improved with additional treatment.
• 41 percent of patients were not able to afford the medical care they needed.
• 88 percent had to cut back on work, school and household activities; 50 percent had to either quit work or school due to illness, and another 11 percent went from full-time to part-time work or school.
Denying treatment to patients has huge public health implications. People with under-treated Lyme disease often lose their jobs and insurance. They go from being productive, taxpaying citizens to being bankrupt, disabled consumers of state-provided services, including disability benefits and special accommodations under Section 504 of the ADA. Children lose years of their childhood, missing important developmental milestones. They have terrible quality of life. Suicide is a not infrequent way out, accounting for 50 percent of Lyme deaths.
Several state legislatures have passed legislation protecting physicians who treat people with chronic Lyme disease from prosecution by state medical boards, and in several more states legislation is pending. The legislation will ensure that physicians are allowed clinical discretion to treat — including antibiotic treatment for longer than four weeks if needed — according to their best judgment and evaluation of the individual patient. Patients are entitled to make an informed choice of the treatment they prefer, based on their own personal values and situation, just like patients with cancer or other diseases. Anything less is inhumane.
Dr. Henderson should examine the evidence herself and not accept at face value the interpretation of powerful, self-appointed authorities who have vested interests to protect. As a public health officer, her responsibility is doubly important — human lives are in her hands. Sadly, because of the head-in-the-sand attitude of most Oregon health professionals, Oregonians have to travel to California to obtain care for Lyme disease. Patient advocacy groups she denigrates in her article have done their homework. I’m afraid Dr. Henderson has not.
--
Phyllis Mervine is president of the California Lyme Disease Association (CALDA), “Empowering Patients Through Advocacy, Education & Research,” www.lymedisease.org
Wednesday, February 24, 2010
Thursday, February 18, 2010
Wednesday, February 17, 2010
Efforts to educate the Public about Lyme disease
Hi my friends,
Below is a great article about how one couple's experience with Lyme disease is being used to educate people in their community about Lyme disease. A piece of legislation has been created to promote awareness of Lyme disease. I think you will enjoy this article!
Be well,
Rick
Begin quotation:
By Laura Dolce
ldolce@seacoastonline.com
February 11, 2010 2:00 AM
KENNEBUNK — The number of Lyme disease cases in Maine tells a story of its own: the reported cases in York County jumped 62 percent between 2007 and 2008, with the increase statewide climbing an astounding 645 percent between 2000 and 2007.
Those numbers prompted state Rep. Ed Legg, D-Kennebunk to sponsor LD 1709, a bill created to foster better awareness of the disease that has already garnered bipartisan support.
What is Lyme disease?
• Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.
• Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.
• Fewer than 50 percent of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15 percent in culture-proven infection with the Lyme spirochete.
• Fewer than 50 percent of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or "bull's-eye" rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.
Source: The International Lyme and Associated Diseases Society
Tips for preventing tick bites, courtesy of Joanne and Barry Tibbetts:
• Wear light clothing when outdoors, which will make it easier to spot a tick.
• Don't assume a trip to the mailbox is safe - ticks can be found almost anywhere.
• Be vigilant when working with purchased mulch, or when doing other yard work.
• Don't assume since the tick hasn't been attached long that you can't get Lyme. You can.
• Protect yourself with DEET-based sprays and your pets with products such as Frontline.
• Keep your yard well mowed to avoid high grasses where ticks like to hide.
• Educate yourself about Lyme disease and its symptoms.
Video:
But the numbers only tell part of the Lyme disease story. It's the people affected by the disease who bring those numbers to life, one story at a time.
Joanne Tibbetts is one of those people. The Scarborough mother of three daughters and wife to Kennebunk Town Manager Barry Tibbetts first got bitten by a tick 15 years ago when looking at houses in Alfred.
"I had no bulls-eye rash," she said. "I looked on the CDC site and I was told I had nothing to worry about."
As time went by, though, Tibbetts started to experience what she described as migrating arthritis and joint pain. Then, 10 years ago, after the family moved to Scarborough, things began to change.
"I had tremendous back pain," she said.
And worse yet was the fatigue.
"I was sleeping most of the day," she said.
As the mother to three active daughters, Tibbetts tried to find ways to work around the exhaustion. If she had to drive the girls somewhere, she would bring a pillow and a blanket and nap in the car once she got there. But as much as she tried to work around her health problems, it was clear she was struggling.
"Just being out in the garden was a big deal," her husband said. "We would try to walk a third of the way around the house and I would have to almost carry her back."
Tibbetts could barely make it to the end of the driveway without collapsing. For nine months, her husband said, she wasn't strong enough to walk to the end of their street. And the problems weren't only physical.
"I had a lot of difficulty with word retrieval," she said. "Cognitive problems."
Her doctor told her she was pre-menopausal, she said, that these things were natural as a woman got older. But Tibbetts knew better. A 2006 Lyme test showed some evidence of the tick-borne disease, but was still considered negative by Centers for Disease Control and Prevention standards. Still, it was enough to give Tibbetts some idea of what she was battling.
The Tibbetts searched for a Lyme specialist and eventually found one who was a clinical assistant research professor at Yale and a board certified neurologist. It cost them $900 for a two-hour visit and testing. But at the end of the visit, Tibbetts' tests were sent to Stony Brook University in New York and the results gave her the answer she was looking for: Lyme disease.
Today, Tibbetts is back to being able to take hikes and lead an active life, though vestiges of the disease remain. To reach this point, though, the family has spent tens of thousands of dollars of their own money to pay for extended antibiotic therapy, additional testing and homeopathic herbal remedies that Tibbetts has administered by a practitioner here in Maine.
They've educated themselves so thoroughly on the disease that when Barry Tibbetts was bitten by a tick in 2006 and began to exhibit symptoms over the next few years — despite a negative Lyme test — they knew they had to look beyond that initial test for an answer.
Barry Tibbetts had a Western blot test, which measures your body's response to certain antigens in the bloodstream. While the CDC mandates that a patient has to have five out of six particular bands on the test for a diagnosis of Lyme, his doctor saw enough in the results to conclude that he, too, had the disease.
The Tibbetts' story is all too familiar to Kennebunk's Linda Pearson. She, too, had a tick bite 17 years ago on Martha's Vineyard and was vigilant in watching for a bulls-eye rash that never came. Months later she was talking to a woman at a party about the extreme pain in her knees when the woman asked, "Have you ever been checked for Lyme?"
Pearson was, and after a positive test, went on antibiotics for a month. But once she stopped the medicine, her symptoms came back. She would repeat this pattern of treatment followed by a re-emergence of symptoms over the next several years, through a move to Maine and raising her sons. The pain — in her neck, in her legs — was bad, but she said the "brain fog" she experienced was even worse. And worse yet, she saw the same symptoms in her kids.
Today, Pearson said the family is working with an osteopath and taking Chinese herbal remedies and focusing heavily on their nutrition.
"We're doing a lot of immune-building things," she said, adding that while antibiotics fight the bacteria, it often goes dormant, only to strike again a few months later. Building the immune system, she said, gives you one more layer of protection of the disease.
Joanne Tibbetts said she, too, has discovered the same thing. She said everything from probiotics, thyroid medication and hormone therapy can be used to treat Lyme — if it's properly diagnosed.
Between the recurring nature of long-term Lyme and its ability to mimic other illnesses, from Chronic Fatigue Syndrome to fibromyalgia, it can be a hard disease to diagnose and treat.
That's why both Tibbetts have spent time in Augusta recently, speaking out on behalf of Legg's bill. Legg himself said he feels the bill, which will name May as Lyme disease awareness month in Maine and change some local protocols for reporting and detection, will be a good first step in bringing more Lyme awareness to Maine.
"It's a big step forward," he said, "but it doesn't settle the issue of how to treat long-term Lyme."
The scientific community is still divided on that, Barry Tibbetts said, both inside Maine and around the country. But while that debate rages on, the Tibbetts said they at least feel like they're doing their part to educate others that Lyme has come to Maine to stay. It's a lesson they had to learn the hard way.
"This is not the world we lived in 15 years ago," Joanne Tibbetts said. "Don't assume you're safe."
End quotation
Below is a great article about how one couple's experience with Lyme disease is being used to educate people in their community about Lyme disease. A piece of legislation has been created to promote awareness of Lyme disease. I think you will enjoy this article!
Be well,
Rick
Begin quotation:
By Laura Dolce
ldolce@seacoastonline.com
February 11, 2010 2:00 AM
KENNEBUNK — The number of Lyme disease cases in Maine tells a story of its own: the reported cases in York County jumped 62 percent between 2007 and 2008, with the increase statewide climbing an astounding 645 percent between 2000 and 2007.
Those numbers prompted state Rep. Ed Legg, D-Kennebunk to sponsor LD 1709, a bill created to foster better awareness of the disease that has already garnered bipartisan support.
What is Lyme disease?
• Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.
• Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.
• Fewer than 50 percent of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15 percent in culture-proven infection with the Lyme spirochete.
• Fewer than 50 percent of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or "bull's-eye" rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.
Source: The International Lyme and Associated Diseases Society
Tips for preventing tick bites, courtesy of Joanne and Barry Tibbetts:
• Wear light clothing when outdoors, which will make it easier to spot a tick.
• Don't assume a trip to the mailbox is safe - ticks can be found almost anywhere.
• Be vigilant when working with purchased mulch, or when doing other yard work.
• Don't assume since the tick hasn't been attached long that you can't get Lyme. You can.
• Protect yourself with DEET-based sprays and your pets with products such as Frontline.
• Keep your yard well mowed to avoid high grasses where ticks like to hide.
• Educate yourself about Lyme disease and its symptoms.
Video:
But the numbers only tell part of the Lyme disease story. It's the people affected by the disease who bring those numbers to life, one story at a time.
Joanne Tibbetts is one of those people. The Scarborough mother of three daughters and wife to Kennebunk Town Manager Barry Tibbetts first got bitten by a tick 15 years ago when looking at houses in Alfred.
"I had no bulls-eye rash," she said. "I looked on the CDC site and I was told I had nothing to worry about."
As time went by, though, Tibbetts started to experience what she described as migrating arthritis and joint pain. Then, 10 years ago, after the family moved to Scarborough, things began to change.
"I had tremendous back pain," she said.
And worse yet was the fatigue.
"I was sleeping most of the day," she said.
As the mother to three active daughters, Tibbetts tried to find ways to work around the exhaustion. If she had to drive the girls somewhere, she would bring a pillow and a blanket and nap in the car once she got there. But as much as she tried to work around her health problems, it was clear she was struggling.
"Just being out in the garden was a big deal," her husband said. "We would try to walk a third of the way around the house and I would have to almost carry her back."
Tibbetts could barely make it to the end of the driveway without collapsing. For nine months, her husband said, she wasn't strong enough to walk to the end of their street. And the problems weren't only physical.
"I had a lot of difficulty with word retrieval," she said. "Cognitive problems."
Her doctor told her she was pre-menopausal, she said, that these things were natural as a woman got older. But Tibbetts knew better. A 2006 Lyme test showed some evidence of the tick-borne disease, but was still considered negative by Centers for Disease Control and Prevention standards. Still, it was enough to give Tibbetts some idea of what she was battling.
The Tibbetts searched for a Lyme specialist and eventually found one who was a clinical assistant research professor at Yale and a board certified neurologist. It cost them $900 for a two-hour visit and testing. But at the end of the visit, Tibbetts' tests were sent to Stony Brook University in New York and the results gave her the answer she was looking for: Lyme disease.
Today, Tibbetts is back to being able to take hikes and lead an active life, though vestiges of the disease remain. To reach this point, though, the family has spent tens of thousands of dollars of their own money to pay for extended antibiotic therapy, additional testing and homeopathic herbal remedies that Tibbetts has administered by a practitioner here in Maine.
They've educated themselves so thoroughly on the disease that when Barry Tibbetts was bitten by a tick in 2006 and began to exhibit symptoms over the next few years — despite a negative Lyme test — they knew they had to look beyond that initial test for an answer.
Barry Tibbetts had a Western blot test, which measures your body's response to certain antigens in the bloodstream. While the CDC mandates that a patient has to have five out of six particular bands on the test for a diagnosis of Lyme, his doctor saw enough in the results to conclude that he, too, had the disease.
The Tibbetts' story is all too familiar to Kennebunk's Linda Pearson. She, too, had a tick bite 17 years ago on Martha's Vineyard and was vigilant in watching for a bulls-eye rash that never came. Months later she was talking to a woman at a party about the extreme pain in her knees when the woman asked, "Have you ever been checked for Lyme?"
Pearson was, and after a positive test, went on antibiotics for a month. But once she stopped the medicine, her symptoms came back. She would repeat this pattern of treatment followed by a re-emergence of symptoms over the next several years, through a move to Maine and raising her sons. The pain — in her neck, in her legs — was bad, but she said the "brain fog" she experienced was even worse. And worse yet, she saw the same symptoms in her kids.
Today, Pearson said the family is working with an osteopath and taking Chinese herbal remedies and focusing heavily on their nutrition.
"We're doing a lot of immune-building things," she said, adding that while antibiotics fight the bacteria, it often goes dormant, only to strike again a few months later. Building the immune system, she said, gives you one more layer of protection of the disease.
Joanne Tibbetts said she, too, has discovered the same thing. She said everything from probiotics, thyroid medication and hormone therapy can be used to treat Lyme — if it's properly diagnosed.
Between the recurring nature of long-term Lyme and its ability to mimic other illnesses, from Chronic Fatigue Syndrome to fibromyalgia, it can be a hard disease to diagnose and treat.
That's why both Tibbetts have spent time in Augusta recently, speaking out on behalf of Legg's bill. Legg himself said he feels the bill, which will name May as Lyme disease awareness month in Maine and change some local protocols for reporting and detection, will be a good first step in bringing more Lyme awareness to Maine.
"It's a big step forward," he said, "but it doesn't settle the issue of how to treat long-term Lyme."
The scientific community is still divided on that, Barry Tibbetts said, both inside Maine and around the country. But while that debate rages on, the Tibbetts said they at least feel like they're doing their part to educate others that Lyme has come to Maine to stay. It's a lesson they had to learn the hard way.
"This is not the world we lived in 15 years ago," Joanne Tibbetts said. "Don't assume you're safe."
End quotation
Tuesday, February 2, 2010
More Lyme disease controversy
Hello friends,
For those of us who have Lyme disease, the controversy concerning the use of long term antibiotics to treat us is very important. Here is another article that explains these current issues. Thanks to our friends at New Hampshire Public Radio and especially to Elaine Grant!
I hope everyone will get involved in their respective communities to voice their experiences with this issue.
Be well,
Richard
Begin quote:
>
For those of us who have Lyme disease, the controversy concerning the use of long term antibiotics to treat us is very important. Here is another article that explains these current issues. Thanks to our friends at New Hampshire Public Radio and especially to Elaine Grant!
I hope everyone will get involved in their respective communities to voice their experiences with this issue.
Be well,
Richard
Begin quote:
>
Lyme Disease Controversy Comes to the Capitol
By Elaine Grant
Created 02/01/2010 - 17:47
Synopsis:
One of the most vitriolic debates in medicine has come to the State House.
Desperate Lyme Disease patients say they are fighting for their lives.
They say doctors who treat their illness with long-term antibiotics are persecuted by the medical establishment.
They want lawmakers to pass legislation that they say will free doctors to treat Lyme Disease as they see fit.
On the other side are doctors equally convinced that long-term antibiotics are both ineffective and dangerous.
NHPR health reporter Elaine Grant has more.
Transcript:
For years, patients suffering from a host of symptoms that they call chronic Lyme Disease have said they encounter difficulty getting treated appropriately.
With its so-called “bucket of symptoms” that mimic numerous other ailments, Lyme Disease can be tough to diagnose.
And for a variety of political reasons, it can be even harder to treat.
Consider the case of Cathy Kettman, a fifty-six year old mother of four from Bow.
Several years ago, she went to the hospital with chest pains – but tests showed no heart disease.
She developed numerous other symptoms, and for five years she searched for a diagnosis.
Cathy Kettman: They sent me to neurologists, endocrinologists, rheumatologists, they sent me to Dartmouth, they sent me back and forth for nine months to Brigham and Women’s looking for a tumor, they were trying to rule out MS and lupus.”
At one point, she was so crippled that her husband had to carry her to the bathroom.
When they asked her family doctor to test her for Lyme Disease, the doctor refused to treat her.
Finally, a doctor in Maine diagnosed her with chronic Lyme.
And that’s the first point of contention in the debate over how to treat these patients.
At issue in the scientific community is the question of whether or not long-term, or chronic, Lyme Disease actually exists.
The Infectious Disease Society of America is a group of 8,000 doctors that sets the generally accepted medical standards for about 50 infectious diseases.
The IDSA says there’s no such thing as chronic Lyme.
Here’s retired Concord doctor Susan Savateer representing the group, testifying before the House Health and Human Services Committee.
Dr. Susan Savateer: “As physicians, we have to be very careful not to give patients a diagnosis of LD unless they meet clinical criteria. Patients with chronic symptoms, mostly subjective, musculoskeletal pain, fatigue, memory deficits, these are common symptoms in our society.”
The Centers for Disease Control generally agrees with the IDSA.
And both groups say there is no benefit – and a great deal of potential harm -- to treating patients with antibiotics for longer than four weeks.
Dr. Paul Mead is an epidemiology chief at the CDC.
Dr. Paul Mead: “The National institutes of Health sponsored several studies to evaluate, well, do antibiotics make these people better? And the answer was, not more so than placebo.”
Furthermore, Mead says, both the antibiotics and long-term use of intravenous drugs can cause a number of serious illnesses and even death.
And doctors who subscribe to the IDSA position say over-diagnosing persistent Lyme can lead them to miss other serious illnesses.
Patients could not disagree more vehemently.
The International Lyme and Associated Diseases Society directly opposes the IDSA.
ILADS says science shows that chronic Lyme is real and that long-term therapy can help.
But advocates say that, in the medical world, IDSA reigns supreme –and that causes doctors to fear following alternative guidelines.
They point to situations like that encountered by Kevin Young, a primary care physician in Plymouth.
Years ago, Young’s daughter came down with a mysterious illness.
She suffered from a variety of neurological problems including intermittent blindness, seizures, and cognitive problems.
Dr. Kevin Young: Over the next two years, she went from being honors English in high school to being unable to comprehend a newspaper article.”
Young sought help from specialists.
Dr. Kevin Young: “No one could explain her problem. During that time, I did follow IDSA guidelines. It was a scary time.”
Finally he gave his daughter antibiotics – for nine and a half years.
Today, he says she’s well.
But his treatment choice came at a professional price.
Dr. Kevin Young: A neurologist who saw my daughter not only questioned my medical judgment, but also threatened to report me for child abuse. He said due to our professional relationship over many years, he would not do that, but that does dramatize the conflict within the medical community.”
The conflict has become so nasty over the last two decades, advocates say, that doctors in many states, including New Hampshire, are afraid to treat Lyme patients.
Representative Gary Daniels: “This has had a chilling effect on the number of Lyme literate physicans who are trained or willing to treat Lyme patients…Many of our state residents are forced to travel beyond our state borders to find the treatment that they need.”
That’s State Representative Gary Daniels, a Republican from Milford.
He says doctors in other states have been prosecuted by medical boards for prescribing long-term antibiotics.
And although it’s never happened in New Hampshire, Daniels wants to make sure it won’t.
He’s sponsored a bill to protect doctors from prosecution by the Board of Medicine should they choose long-term treatment.
The New Hampshire Medical Society opposes the bill, saying physicians are already free to treat as they wish.
Lawmakers also question whether any other illness has received exemptions from medical oversight.
In response, advocates say the scientific community views Lyme differently.
And that has broader implications.
Pat Smith is president of the Lyme Disease Association.
Pat Smith: “We actually have cases where insurers have not paid for medical treatments due to the IDSA guidelines. We have cases where pharmacies have stopped giving patients their medicines because of the IDSA standards.”
Further complicating an already thorny issue is the question of the IDSA’s integrity.
Last year, Connecticut Attorney General Richard Blumenthal settled an anti-trust case against the IDSA.
According to court documents, the IDSA Lyme review panel was found to have conflicts of interest, including ties to drug and insurance companies.
The IDSA is reviewing its guidelines, but no major changes are expected.
Legislation virtually identical to New Hampshire’s passed unanimously in Connecticut last year.
Similar bills are pending in Massachusetts, Minnesota, and Virginia.
With 92 cases per 100,000 people, New Hampshire has the highest reported incidence of Lyme Disease in the country.
For NHPR News, I’m Elaine Grant.
Audio file:
NHT020110eg1.wav
End quote
End quote
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About Me
- rbowman838
- Pueblo, Colorado, United States
- I am a Chronic Lyme disease patient. I was bitten by a tick in 2001 and have been very sick ever since. Subsequently, you could say I am a Lyme disease junkie.I thirst for any information about it,any treatments, research etc. It has been a life altering experience, which has kept me away from our business and at home most of the time. I use to own A-1 Barricade and Sign Inc. here in Pueblo, Co, but because of the Lyme disease, my sons are running the business for the most part with my wife. I have been married for 48 years to a wonderful woman who is also my best friend. We have five children, all grown. Four boys live here in Pueblo and my only daughter lives in Bonney Lake, Washington. We miss her a lot. I have 7 grandchildren, which are the greatest of all. They are all exceptionally beautiful! The last thing you need to know about me is that I am proud to be a member of The Church of Jesus Christ of Latter-Day Saints. Because of this I have the knowledge that life is eternal and that it does not end here, but it will go on after death because of the Atonement of Jesus Christ. This truth I bear witness of!