Lyme Disease in the news
Let's Get the Lyme movie on Oprah
12/14/08 12:32
Dr. Mehmet Oz of the Oprah & Friends Network aired a 45-minute interview with director Andy Abrahams Wilson and medical correspondent Kathy Fowler on his nationally syndicated talk radio show November 26, 2008. Dr. Oz, a renowned surgeon and health expert, said "I was so moved!" and called Under Our Skin "a beautiful film...a whole different way of thinking about reporting on health."
Moved as he was, Dr. Oz expressed interest in trying to get Under Our Skin on Oprah, where he is a regular guest contributor. But first, in order to gauge viewer interest, Dr. Oz and Oprah need to hear from you. Here's what you can do -- and please remember to praise Dr. Oz's coverage of the issue and the film.
So now we know that we are on Oprah's radar... that is a big deal. But so far, there has not been an impressive enough response to Dr. Oz's show.
We need more. Get your friends, family, co-workers, doctors, nurses, anyone and everyone you know to write Dr. Oz. There are Lyme groups around the world - everyone needs to be passing this info along and getting everyone to email in. Can everyone post it everywhere.. email in. Ask friends and other people who know what you are going through to contact Dr. Oz.
Getting on Oprah would be a very huge deal.
Here is the info again to Email Dr. Oz.
Also, you can leave comments on Oprah's community forum.
Moved as he was, Dr. Oz expressed interest in trying to get Under Our Skin on Oprah, where he is a regular guest contributor. But first, in order to gauge viewer interest, Dr. Oz and Oprah need to hear from you. Here's what you can do -- and please remember to praise Dr. Oz's coverage of the issue and the film.
So now we know that we are on Oprah's radar... that is a big deal. But so far, there has not been an impressive enough response to Dr. Oz's show.
We need more. Get your friends, family, co-workers, doctors, nurses, anyone and everyone you know to write Dr. Oz. There are Lyme groups around the world - everyone needs to be passing this info along and getting everyone to email in. Can everyone post it everywhere.. email in. Ask friends and other people who know what you are going through to contact Dr. Oz.
Getting on Oprah would be a very huge deal.
Here is the info again to Email Dr. Oz.
Also, you can leave comments on Oprah's community forum.
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Dr. Oz interviews Under Our Skin filmmaker
11/24/08 14:52
We received a flood of comments about Oprah's interest in Lyme disease. She's listening! And now there's someone you'll want to listen to as well.
You can hear Oprah's Dr. Oz this week on XM Radio as he interviews filmmaker Andy Abrahams Wilson, whose Lyme documentary Under Our Skin is helping turn the tide of attention toward this controversial and misunderstood disease.
The show airs Wednesday, November 26th at 1 a.m. 7 a.m. and 6 pm EST. Oprah and Friends producers say people who don’t subscribe to the satellite radio can also listen by going to http://www.oprah.com/radio and clicking on the “Free 30 Day XM Radio Trial.” Register and you can listen online.
Dr. Oz asks for Lyme patients to tell their Lyme stories.
You can hear Oprah's Dr. Oz this week on XM Radio as he interviews filmmaker Andy Abrahams Wilson, whose Lyme documentary Under Our Skin is helping turn the tide of attention toward this controversial and misunderstood disease.
The show airs Wednesday, November 26th at 1 a.m. 7 a.m. and 6 pm EST. Oprah and Friends producers say people who don’t subscribe to the satellite radio can also listen by going to http://www.oprah.com/radio and clicking on the “Free 30 Day XM Radio Trial.” Register and you can listen online.
Dr. Oz asks for Lyme patients to tell their Lyme stories.
Lyme documentary filmmaker's speech
11/18/08 13:31
When filmmaker Andy Abrahams Wilson began making his Lyme documentary, Under Our Skin, he was driven by compassion and curiosity, two potent characteristics that led him to uncover the stories of many people who were struggling in silence. By winning the Vision of Hope Award from the prestigious Turn the Corner Foundation, Andy hopes the film will lend its weight to the collective tipping point needed to bring Lyme disease to the forefront of public awareness.
"My being was changed irrevocably by what I witnessed: suffering, injustice, and deafening silence. And above all: the courage of so many to persevere, to fight for life amidst the eclipse of light: the pain, fear, loneliness, and the mantra ‘It’s all in your head,’ " he says.
Read the full text of Andy Abrahams Wilson's acceptance speech for his Vision of Hope award on the Under Our Skin blog.
"My being was changed irrevocably by what I witnessed: suffering, injustice, and deafening silence. And above all: the courage of so many to persevere, to fight for life amidst the eclipse of light: the pain, fear, loneliness, and the mantra ‘It’s all in your head,’ " he says.
Read the full text of Andy Abrahams Wilson's acceptance speech for his Vision of Hope award on the Under Our Skin blog.
Under Our Skin filmmaker honored
11/07/08 15:11
Congratulations to filmmaker Andy Abrahams Wilson, who is being honored this week at a Turn the Corner Foundation event in New York City. Andy's heartwrenching and eye-opening documentary film, Under Our Skin, exposes the medical establishment's frequent dismissal of people suffering with Lyme.
From the press release: Turn the Corner will present the Vision of Hope Award to Andy Abrahams Wilson, Producer/Director of Under Our Skin, a film that investigates the shocking human, medical and political dimensions of Lyme disease, for his efforts to raise awareness for chronic Lyme disease. Leading Lyme-literate physician, Bernard D. Raxlen, MD, will receive the Humanitarian Award for his dedication to treating patients with tick-borne diseases, including Lyme.
"TTC is doing important work for the Lyme community, and has been a great force behind Under Our Skin," said Andy Abrahams Wilson. "Thanks to our joint efforts, the mainstream medical establishment can no longer ignore or marginalize chronic Lyme disease and its sufferers."
Andy is a featured expert in the LDRD's interview series.
Lyme patients take the fight to DC
09/25/08 11:01
A bill that would direct 20 million dollars toward Lyme disease research is being held up by committee. Lyme patients showed up by the dozens this week on Capitol Hill to show Congress that increasingly, people are exposed to serious tick-borne diseases and are in dire need of more doctors who are educated about Lyme disease treatment.
Joe LeBlanc, Director of the Central Virginia Chapter of the National Capital Lyme & Tick-Borne Disease Association emailed an optimistic note yesterday from the Congressional Briefing. Joe reports that there was "standing room only" at the meeting, and despite the focus on the financial crisis, the briefing went very well. Now, we have to keep on top of our congressional representatives to keep up the momentum.
A big thank you to Joe and everyone who traveled to the Hill to speak up on all our behalf!
Watch the news video.
Read the article.
Joe LeBlanc, Director of the Central Virginia Chapter of the National Capital Lyme & Tick-Borne Disease Association emailed an optimistic note yesterday from the Congressional Briefing. Joe reports that there was "standing room only" at the meeting, and despite the focus on the financial crisis, the briefing went very well. Now, we have to keep on top of our congressional representatives to keep up the momentum.
A big thank you to Joe and everyone who traveled to the Hill to speak up on all our behalf!
Watch the news video.
Read the article.
IDSA Lyme guidelines to be reviewed
08/07/08 15:52
The IDSA is now accepting applications for members to serve on the review panel of treatment guidelines for Lyme disease. Urge your Lyme aware doctor to apply. This is their opportunity to serve the people affected by this epidemic.
In May, 2008, the IDSA agreed to have an independent panel review the guidelines, to determine whether they need to be revised or not. The agreement was part of a settlement reached when Attorney General of Connecticut, Richard Blumenthal, called for an antitrust investigation into the writing process of the 2006 IDSA guidelines for Lyme treatment.
This is a historic moment in US medical history. Although review of treatment guidelines is a normal part of IDSA procedure, this is the first time it has been legally ordered to invite an independent panel of doctors and scientists to conduct the review.
From the IDSA website:
"A panel of eight to 12 physicians and scientists will be assembled to review and critically appraise the literature on Lyme disease. The panel will also consider data and other information submitted to IDSA and will hold a public hearing where individuals may present data to the panel for consideration. At the conclusion of this process, the review panel will evaluate whether each of the recommendations in the 2006 guidelines is supported by the scientific evidence and will make a recommendation to IDSA as to whether its 2006 guidelines should be revised or updated. Any proposed recommendations shall require a supermajority of 75 percent or more of the total voting members of the panel."
The review time is estimated to take 8 - 12 months. We'll be keeping an eye on the entire process, and posting our notes here. Especially interesting will be the public hearing, which will be available for viewing online at the IDSA website.
In May, 2008, the IDSA agreed to have an independent panel review the guidelines, to determine whether they need to be revised or not. The agreement was part of a settlement reached when Attorney General of Connecticut, Richard Blumenthal, called for an antitrust investigation into the writing process of the 2006 IDSA guidelines for Lyme treatment.
This is a historic moment in US medical history. Although review of treatment guidelines is a normal part of IDSA procedure, this is the first time it has been legally ordered to invite an independent panel of doctors and scientists to conduct the review.
From the IDSA website:
"A panel of eight to 12 physicians and scientists will be assembled to review and critically appraise the literature on Lyme disease. The panel will also consider data and other information submitted to IDSA and will hold a public hearing where individuals may present data to the panel for consideration. At the conclusion of this process, the review panel will evaluate whether each of the recommendations in the 2006 guidelines is supported by the scientific evidence and will make a recommendation to IDSA as to whether its 2006 guidelines should be revised or updated. Any proposed recommendations shall require a supermajority of 75 percent or more of the total voting members of the panel."
The review time is estimated to take 8 - 12 months. We'll be keeping an eye on the entire process, and posting our notes here. Especially interesting will be the public hearing, which will be available for viewing online at the IDSA website.
ABC Great Lyme Debate - Part 3
08/06/08 15:47
Part 3 of ABC's Great Lyme Debate.
Families and whole neighborhoods have contracted this debilitating disease.
Watch how experts gather ticks on a collecting expedition.
Please watch and share this educational video, and drop a note of thanks to journalist Kathy Fowler at ABC, for calling attention to Lyme disease. Our comments matter.
Families and whole neighborhoods have contracted this debilitating disease.
Watch how experts gather ticks on a collecting expedition.
Please watch and share this educational video, and drop a note of thanks to journalist Kathy Fowler at ABC, for calling attention to Lyme disease. Our comments matter.
ABC covers Lyme debate - part 2
08/04/08 16:33
LDRD vlog
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
ABC covers the Lyme Debate
08/02/08 11:51
* Is Lyme disease an unrecognized epidemic?
* If left untreated, will it become chronic?
* Can Lyme be treated with long-term antibiotics?
Or do you believe, as IDSA docs do, that the Lyme epidemic is nonexistent? Is chronic Lyme disease all in the patients' head? Are long-term antibiotics dangerous?
These questions simmer at the heart of the great Lyme debate, which is played out every day in decisions made by IDSA doctors on one hand, and ILADS physicians on the other. The IDSA is currently reviewing its treatment guidelines.
Who's correct? Where do you stand? Anyone who has ever been doubted by their Infectious Disease doctor, and all of us whose lives are affected by Lyme will want to watch this three part story.
ABC News covers the Lyme controversy. Take a look. If you appreciate this report, please take a moment to call or email ABC and let them know. Our opinions as viewers matter to them.
NY Times article on Lyme disease
07/16/08 15:56
There's a lot to admire about Jane Brody's recent NY Times article on Lyme disease, A Threat in a Grassy Stroll. It will inform some who haven't ever heard of the disease (yes, they're out there), or people who had heard of it but know squat about it, such as my Aunt Louise, who called to offer her condolences after I was diagnosed. ("Unfortunately, nothing can be done, dear. Eating rosemary is supposed to help.") The article may even throw a wrench in the common nonsense that Lyme is "hard to get, and easy to cure," a myth that originally began where? With an article in the NY Times, by Gina Kolata.
Perhaps what I appreciate most about Brody's piece is that alongside the statistics and experts she quotes, she offers her own personal observations. After presenting the simplified version of the IDSA's and ILADS conflicting views on treatment, she says, "Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than 'official' diagnostic and treatment guidelines suggest." The article's meta-text is twofold. First: Don't believe everything you read. And second: Don't discount your own observations.
My problems with the article are fairly nit-picky, and my bias in support of ILADS makes me frustrated to see this global organization of highly-educated physicians and researchers referred to as "a nonprofit medical group," but okay, they are a nonprofit medical group. I also think it's a little weak on Brody's part to suggest the ISDA simply agreed to revise its Lyme treatment guidelines, since in fact the IDSA faced criminal charges of antitrust if they refused to do so. Furthermore, Eva Sapi, PhD, director of Lyme disease research at UNH, says that even 40% DEET wasn't strong enough to repel ticks when she and her students ventured out on their tick-collecting walks through Fairfield County, CT. She recommends permethrin-saturated clothing instead. And Dr. Sapi says that ticks have been known to transmit bacteria after only one or two hours -- not the 24 hours that Brody says the vile little critters need.
Some of these transgressions, even if they're small, can spread damaging half-truths to the overall message about Lyme. The truth is, it's a serious disease. Easy to get, and hard to cure. The lucky ones are cured following the simplistic guidelines of the IDSA. But the numbers of sick people who don't get better on that protocol tell a different story. In all, I have to say it's exciting to see good reporters talking about Lyme, bringing their own observations into the mix, and not simply mouthing the words of the CDC.
Listen to the experts themselves, and use your own good judgment.
Perhaps what I appreciate most about Brody's piece is that alongside the statistics and experts she quotes, she offers her own personal observations. After presenting the simplified version of the IDSA's and ILADS conflicting views on treatment, she says, "Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than 'official' diagnostic and treatment guidelines suggest." The article's meta-text is twofold. First: Don't believe everything you read. And second: Don't discount your own observations.
My problems with the article are fairly nit-picky, and my bias in support of ILADS makes me frustrated to see this global organization of highly-educated physicians and researchers referred to as "a nonprofit medical group," but okay, they are a nonprofit medical group. I also think it's a little weak on Brody's part to suggest the ISDA simply agreed to revise its Lyme treatment guidelines, since in fact the IDSA faced criminal charges of antitrust if they refused to do so. Furthermore, Eva Sapi, PhD, director of Lyme disease research at UNH, says that even 40% DEET wasn't strong enough to repel ticks when she and her students ventured out on their tick-collecting walks through Fairfield County, CT. She recommends permethrin-saturated clothing instead. And Dr. Sapi says that ticks have been known to transmit bacteria after only one or two hours -- not the 24 hours that Brody says the vile little critters need.
Some of these transgressions, even if they're small, can spread damaging half-truths to the overall message about Lyme. The truth is, it's a serious disease. Easy to get, and hard to cure. The lucky ones are cured following the simplistic guidelines of the IDSA. But the numbers of sick people who don't get better on that protocol tell a different story. In all, I have to say it's exciting to see good reporters talking about Lyme, bringing their own observations into the mix, and not simply mouthing the words of the CDC.
Listen to the experts themselves, and use your own good judgment.
20,000 cases? Sorry, you're wrong
07/06/08 17:16
Dear ABC Good Morning America,
Thank you for running the story on Lyme disease. However, I would like to challenge your reporters on one point. The number of new cases of Lyme per year is said by Lyme specialists to be ten to forty times higher than the 20,000 quoted by the CDC, and the number used in your report. Gross misdiagnosis and under-diagnosis is due in part to the notoriously inaccurate tests for Lyme that are currently in use by most infectious disease doctors in the US. These tests are the Western Blot and the ELISA.
The Lyme compound consists of the spirochetal Borrelia bacteria, plus any number of mycoplasma parasites and other pathogens. This compound is a particularly stealth bacteria that is able to evade the body's immune system, therefore protecting itself from the attack of antibiotics by drawing up a shield around itself, and hiding in various cyst forms throughout the patient's body and brain. The common tests for Lyme do not account for the sophisticated nature of this bacteria, according to researchers at the University of New Haven, Dr. Alan MacDonald and Dr. Eva Sapi.
Another reason for the misdiagnosis is the fact that no two Lyme patients present symptoms in the same way. In addition, it is not known how long the bacteria may lie dormant.
The irksome fact that the process of writing the IDSA treatment guidelines have been found to be in violation of the law has created quite a stir with patients of this devastating disease. The most profound problem is the existence of two standards of care for Lyme, which directly affects patients' health insurance and coverage of long-term antibiotics. ILADs physicians have told me that there are thousands of scientific models proving that Lyme can go chronic if undertreated or left untreated. The IDSA has ignored that scientific evidence. This is the heart of the Lyme debate.
Thank you for running the story on Lyme disease. However, I would like to challenge your reporters on one point. The number of new cases of Lyme per year is said by Lyme specialists to be ten to forty times higher than the 20,000 quoted by the CDC, and the number used in your report. Gross misdiagnosis and under-diagnosis is due in part to the notoriously inaccurate tests for Lyme that are currently in use by most infectious disease doctors in the US. These tests are the Western Blot and the ELISA.
The Lyme compound consists of the spirochetal Borrelia bacteria, plus any number of mycoplasma parasites and other pathogens. This compound is a particularly stealth bacteria that is able to evade the body's immune system, therefore protecting itself from the attack of antibiotics by drawing up a shield around itself, and hiding in various cyst forms throughout the patient's body and brain. The common tests for Lyme do not account for the sophisticated nature of this bacteria, according to researchers at the University of New Haven, Dr. Alan MacDonald and Dr. Eva Sapi.
Another reason for the misdiagnosis is the fact that no two Lyme patients present symptoms in the same way. In addition, it is not known how long the bacteria may lie dormant.
The irksome fact that the process of writing the IDSA treatment guidelines have been found to be in violation of the law has created quite a stir with patients of this devastating disease. The most profound problem is the existence of two standards of care for Lyme, which directly affects patients' health insurance and coverage of long-term antibiotics. ILADs physicians have told me that there are thousands of scientific models proving that Lyme can go chronic if undertreated or left untreated. The IDSA has ignored that scientific evidence. This is the heart of the Lyme debate.
Lyme story airs!
07/04/08 13:30
According to Brooke Landau, Lyme activist and TV news reporter, television stations listen and respond when they are deluged with requests from viewers to air stories about a specific topic. Viewers are their bread and butter. Please take the time to comment on the ABC website to let them know you appreciate the story they aired this morning about the documentary film, Under Our Skin. Here's my comment to them:
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Good Morning America, where's the Lyme story?
07/03/08 11:15
Where's the story? I know I wasn't the only one who was sorely disappointed to see that Good Morning America did not air the Lyme segment. Let's give them the benefit of the doubt, and assume that due to a programming snafu, they rescheduled. Please use this link to the ABC News contact form. Let them know that you - and your family and friends - all want to see it.
Lyme is making headline news
07/02/08 13:06
A book and a film. How many times have you read a book, or seen a film, that shook your world view, opened your eyes, that made you take a second look at something you thought you understood. As a smart, sensitive person you've probably had that experience all throughout your life. Now is the time to pick up (and share) a phenomenal new book and go see a mind-expanding documentary film. Both deal head-on with the controversy surrounding the growing epidemic of Lyme disease. Be sure to watch the coverage on Good Morning America, ABC News, on Thursday July 3. It's important to let them know you're glad to see a story about Lyme on the mainstream news! Post your responses to their discussion on their website: http://abcnews.go.com/gma
Cure Unknown: Inside the Lyme Epidemic, is science journalist Pamela Weintraub's new book about her family's innocent decent into the living hell of Lyme, their tribulations and subsequent conquest over this grueling disease. According to Kaja Perina, editor in chief of Psychology Today, "This is an important and unforgettable book, destined to make a lasting contribution to the field of investigative health journalism.”
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Cure Unknown: Inside the Lyme Epidemic, is science journalist Pamela Weintraub's new book about her family's innocent decent into the living hell of Lyme, their tribulations and subsequent conquest over this grueling disease. According to Kaja Perina, editor in chief of Psychology Today, "This is an important and unforgettable book, destined to make a lasting contribution to the field of investigative health journalism.”
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Lyme disease controversy on Good Morning America, ABC TV
07/02/08 11:19
Lyme disease controversy to be discussed on Thursday morning July 3, Good Morning America , ABC TV.
PLEASE DISTRIBUTE:
FROM DR. BRANSFIELD
Hi,
The movie Under Our Skin and the book Cure Unknown have awoken interest in the Lyme disease debate. Good Morning America will be showing a news story on the Lyme disease controversy Thursday morning between 7:30 and 8:00 AM. This came up on short notice and I was filmed late
yesterday. Someone from the opposing IDSA school of thought was also filmed in the Washington area.
Best,
Bob
Robert C Bransfield, MD, DFAPA, PC
225 State Route 35
Red Bank , NJ 07701
Phone 732-741-3263
Fax 732-741-5308
Email bransfield@comcast. net
Website www.MentalHealthand Illness.com
PLEASE DISTRIBUTE:
FROM DR. BRANSFIELD
Hi,
The movie Under Our Skin and the book Cure Unknown have awoken interest in the Lyme disease debate. Good Morning America will be showing a news story on the Lyme disease controversy Thursday morning between 7:30 and 8:00 AM. This came up on short notice and I was filmed late
yesterday. Someone from the opposing IDSA school of thought was also filmed in the Washington area.
Best,
Bob
Robert C Bransfield, MD, DFAPA, PC
225 State Route 35
Red Bank , NJ 07701
Phone 732-741-3263
Fax 732-741-5308
Email bransfield@comcast. net
Website www.MentalHealthand Illness.com
SELF writer describes Lyme nightmare
06/09/08 12:30
In the June 2008 issue, SELF magazine contributing editor Tula Karras vividly tells her story of misery and confusion before finally receiving a correct diagnosis of Lyme disease after suffering eight years of symptoms. Somehow she pulled through, keeping her obviously brilliant writing skills intact. Blessings to Tula! And kudos to SELF for printing this honest piece of writing about the challenge of Lyme.
Learn more about the benefits of becoming a member.
Learn more about the benefits of becoming a member.
Breaking News: IDSA guidelines under scrutiny
05/07/08 13:20
"Serious flaws in the IDSA's process for writing its 2006 Lyme disease guidelines" have been revealed during an antitrust investigation conducted by Connecticut Attorney General Richard Blumenthal. Reassessment of the guidelines must now take place with an outside arbiter and a "conflicts-free panel." The subsequent hearing is also required to be broadcast live on the IDSA's website.
Turns out it's not nice -- or particularly legal -- to stack the panel with people who stand to make loads of cash from drug and insurance companies, Lyme disease diagnostic tests and patents. Stay tuned for developments. It's bound to get wild in the coming weeks and months, especially with IDSA-loving Dr. Gary Wormser shrugging off the investigation and calling it "absurd." Conflicts? What conflicts?
This significant turn of events could soon impact your ability to get proper treatment. Meantime, we'll continue to interview physicians who specialize in Lyme and who can give us the inside scoop and help us understand the ramifications of the reassessment.
Please become a member to hear upcoming interviews with Lyme experts on this issue.
Read the IDSA's press release.
Turns out it's not nice -- or particularly legal -- to stack the panel with people who stand to make loads of cash from drug and insurance companies, Lyme disease diagnostic tests and patents. Stay tuned for developments. It's bound to get wild in the coming weeks and months, especially with IDSA-loving Dr. Gary Wormser shrugging off the investigation and calling it "absurd." Conflicts? What conflicts?
This significant turn of events could soon impact your ability to get proper treatment. Meantime, we'll continue to interview physicians who specialize in Lyme and who can give us the inside scoop and help us understand the ramifications of the reassessment.
Please become a member to hear upcoming interviews with Lyme experts on this issue.
Read the IDSA's press release.
Hunting deer won't eradicate Lyme
01/22/08 14:25
Each Tuesday and Thursday through the end of February, the sound of sharpshooters hunting white-tailed deer will echo through the neighborhoods of suburban New Jersey. The deer overpopulate, eat the trees, and pose a traffic hazard. They also spread Lyme disease.
Intelligent management of the deer population is necessary for many reasons. However, it isn't prudent to assume that by killing the deer we can eradicate the spread of Lyme. Preventing the spread of Lyme disease, which is believed to be caused by the bite of a Ixode tick, is more complex than getting rid of the deer. While it's true that deer make excellent hosts, roaming and foraging in the brush where ticks are likely to be waiting for a ride, it is also a fact that even if the deer population was to altogether disappear, ticks would continue to survive simply by looking elsewhere for their immediate needs.
Birds, mice, and other rodents make a perfectly acceptable meal ticket for the lowly tick, who isn't picky. A tiny tick can only move within a limited space: about a nine foot range. Ticks generally occupy a space from the ground up to about three feet, clinging to grasses and brush, which is why it is important to wear protective clothing and use caution when you walk or hike through forested areas. They are intent on finding a host who can give them what they need to survive, and any convenient warm-blooded animal who ventures close enough to offer a ride and a hot supper will do. It doesn't need to be a deer.
Intelligent management of the deer population is necessary for many reasons. However, it isn't prudent to assume that by killing the deer we can eradicate the spread of Lyme. Preventing the spread of Lyme disease, which is believed to be caused by the bite of a Ixode tick, is more complex than getting rid of the deer. While it's true that deer make excellent hosts, roaming and foraging in the brush where ticks are likely to be waiting for a ride, it is also a fact that even if the deer population was to altogether disappear, ticks would continue to survive simply by looking elsewhere for their immediate needs.
Birds, mice, and other rodents make a perfectly acceptable meal ticket for the lowly tick, who isn't picky. A tiny tick can only move within a limited space: about a nine foot range. Ticks generally occupy a space from the ground up to about three feet, clinging to grasses and brush, which is why it is important to wear protective clothing and use caution when you walk or hike through forested areas. They are intent on finding a host who can give them what they need to survive, and any convenient warm-blooded animal who ventures close enough to offer a ride and a hot supper will do. It doesn't need to be a deer.
DOH wants your Lyme story
01/04/08 12:02
Want to tell the Pennsylvania Department of Health about your personal experiences with Lyme disease treatment? The Lyme Disease Task Force wants to hear from you. Linda Wales, co-leader of Lyme patient rights group NYPenn Lyme Disease Support Group, posted this letter to the editor of the Star-Gazette.com this morning:
Task force seeks input on Lyme disease
January 4, 2008
It is time for Lyme disease patients to be heard.
The Pennsylvania Department of Health established a Commonwealth Lyme Disease Task Force in 2007 to examine issues and draft recommendations regarding Lyme disease. It was decided feedback from Lyme disease patients is needed. NYPenn Lyme Disease Support Group received notification this task force will host a public hearing from 1 to 4 p.m. Tuesday at the Keystone Building, Hearing Room 1, on Forster Street and Commonwealth Avenue in Harrisburg, Pa. Everyone is welcome; there will be question-and- answer sessions.
They recognize how important it is to receive a wide range of feedback and realize it would be impossible for many Lyme sufferers to attend. Therefore, letters explaining experiences with tick-borne diseases will be accepted through Jan. 31.
Please send to Dr. James Rankin, Pennsylvania Department of Health, Room 933, 7th and Forster Street, Harrisburg, PA 17120 or fax to (717) 772-6975.
Questions may be directed to Dr. James Rankin by telephone at (717) 787-3350.
Lyme disease is quickly becoming a serious health problem in Pennsylvania (and nationally). If you choose to remain silent or think you need to do nothing because someone else will, the Department of Health could believe it is no big deal and may drop the issue.
Linda Wales
Co-leader, NYPenn LDSG
Millerton, PA
Task force seeks input on Lyme disease
January 4, 2008
It is time for Lyme disease patients to be heard.
The Pennsylvania Department of Health established a Commonwealth Lyme Disease Task Force in 2007 to examine issues and draft recommendations regarding Lyme disease. It was decided feedback from Lyme disease patients is needed. NYPenn Lyme Disease Support Group received notification this task force will host a public hearing from 1 to 4 p.m. Tuesday at the Keystone Building, Hearing Room 1, on Forster Street and Commonwealth Avenue in Harrisburg, Pa. Everyone is welcome; there will be question-and- answer sessions.
They recognize how important it is to receive a wide range of feedback and realize it would be impossible for many Lyme sufferers to attend. Therefore, letters explaining experiences with tick-borne diseases will be accepted through Jan. 31.
Please send to Dr. James Rankin, Pennsylvania Department of Health, Room 933, 7th and Forster Street, Harrisburg, PA 17120 or fax to (717) 772-6975.
Questions may be directed to Dr. James Rankin by telephone at (717) 787-3350.
Lyme disease is quickly becoming a serious health problem in Pennsylvania (and nationally). If you choose to remain silent or think you need to do nothing because someone else will, the Department of Health could believe it is no big deal and may drop the issue.
Linda Wales
Co-leader, NYPenn LDSG
Millerton, PA
New LDRD site is complete
09/17/07 16:46
Lyme research ignored by mainstream medical community
03/12/07 09:52
I recently interviewed Dr. Andrew Wright near Manchester, in the UK, who brought up an interesting fact about Lyme disease and the way it is contracted and spread. He cited a study that was done in New Guinea that found a majority of the population, 70%, were infected with Lyme disease. Since there are no ticks in the area, Dr. Wright and other medical practitioners and researchers wonder how these people are becoming infected.
Read more here.
Read more here.
Investigation into the October IDSA rulings
01/15/07 15:45
Connecticut Attorney General Richard Blumenthal, in an unprecedented historical move, has begun an investigation into the recent IDSA rulings regarding treatment for Lyme.
Click here to read the press release, which includes the President of the Lyme Disease Association (LDA) Pat Smith's statement of support. Let's all make sure Mr. Blumenthal knows how thankful we are that he's doing the right thing and tell him he's got our support.
Write to him at: attorney.general@po.state.ct.us
Click here to read the press release, which includes the President of the Lyme Disease Association (LDA) Pat Smith's statement of support. Let's all make sure Mr. Blumenthal knows how thankful we are that he's doing the right thing and tell him he's got our support.
Write to him at: attorney.general@po.state.ct.us
O, Thank You!
12/27/06 13:41
Okay kids, the thing we really really need is publicity, right? Acknowledgement and assistance from the medical profession and others. Well, here's Oprah to the rescue. It's a genuine pleasure to see the first ever national ad that calls attention to this national endemic.
Please check out the powerful ad from the Turn the Corner Foundation in the November issue of Oprah magazine, and then take just a moment to e-mail a thank you note for running it. Oprah has the potential to help break this story wide open. Isn't it about time?
Here is the link to e-mail your thanks O magazine for running the ad:
http://www2.oprah.com/omagazine/omag_wehear.jhtml
Please check out the powerful ad from the Turn the Corner Foundation in the November issue of Oprah magazine, and then take just a moment to e-mail a thank you note for running it. Oprah has the potential to help break this story wide open. Isn't it about time?
Here is the link to e-mail your thanks O magazine for running the ad:
http://www2.oprah.com/omagazine/omag_wehear.jhtml
PBS interview with Kathleen Zabawa
12/21/06 12:39
Here's something I know you're going to want to see. Watch this PBS interview presented in Houston last week (Nov 3 2006). It's excellent. Kathleen Zabawa has Lyme and really tells it like it is. She's a brave patient and an advocate for us all. One of her most important points is that Lyme needs publicity. Did you know that there are less than 100 doctors in the U.S. who are even Lyme literate?
http://video.google.com/videoplay?docid=-4726635875489946625
Watch it now and then send it to your family members and friends; it will help them understand you and all the weird symptoms. It's fantastic. I'm off to send a thank you note to this woman and the host of the show. There is hope for understanding and hope for healing! We've just got a lot of work to do.
The only thing that saddens me is that it doesn't look like Kathleen has tried Samento or Cumanda, and I've interviewed Lymies who are symptom-free and healthy again because of these powerful, effective alternatives to antibiotics. I wish I could snap my fingers and get everyone with Lyme to try them. But until their doctors recommend them, people are often reluctant to try anything new. Does that make sense, though, when the doctor knows less about Lyme than you do?
http://video.google.com/videoplay?docid=-4726635875489946625
Watch it now and then send it to your family members and friends; it will help them understand you and all the weird symptoms. It's fantastic. I'm off to send a thank you note to this woman and the host of the show. There is hope for understanding and hope for healing! We've just got a lot of work to do.
The only thing that saddens me is that it doesn't look like Kathleen has tried Samento or Cumanda, and I've interviewed Lymies who are symptom-free and healthy again because of these powerful, effective alternatives to antibiotics. I wish I could snap my fingers and get everyone with Lyme to try them. But until their doctors recommend them, people are often reluctant to try anything new. Does that make sense, though, when the doctor knows less about Lyme than you do?
300 Protest IDSA guidelines
12/01/06 13:48
Among the protest signs held up by attendees was a little boy's that read, "All I Want For Christmas is My Medicine."
Reporter Liz Anderson of the Journal News in Westchester, PA, covered the rally which took place on November 30:
Protesters cheered Dr. Joseph Burrascano, vice president of the International Lyme and Associated Diseases Society, which supports the use of long-term antibiotics in some cases and has called on the IDSA to retract the recommendations.
"If they weren't so seriously flawed, I would say it was a joke," he said of the guidelines. He urged those at the rally to fight back "by uncovering the truth."
Read the entire article here.
Reporter Liz Anderson of the Journal News in Westchester, PA, covered the rally which took place on November 30:
Protesters cheered Dr. Joseph Burrascano, vice president of the International Lyme and Associated Diseases Society, which supports the use of long-term antibiotics in some cases and has called on the IDSA to retract the recommendations.
"If they weren't so seriously flawed, I would say it was a joke," he said of the guidelines. He urged those at the rally to fight back "by uncovering the truth."
Read the entire article here.
protest the IDSA guidelines
11/24/06 13:45
Read this comprehensive article published in Danbury CT that cuts to the heart of the matter:
Nov 28 2006 6:39 AM
Lyme disease activists to protest
By Robert Miller
THE NEWS-TIMES
Area Lyme disease activists, dismayed by recently released treatment guidelines for the illness, will go public with their protest Thursday, rallying at Westchester Medical Center/New York Medical College in Valhalla, N.Y., where the lead author of the guidelines works.
"They're highly restrictive,'' said Dr. Steven Phillips, a Ridgefield physician who is the former president of the International Lyme and Associated Diseases Society. "I just cannot understand why they've chosen to ignore all the data on this.''
"They were worse than we expected,'' said Maggie Shaw of the Newtown Lyme Disease Task Force.
"In a word, I think they're a disgrace,'' said Dr. Raphael Stricker of San Francisco, who is the current president of ILADS. "They're not relying on best science. They're relying on their opinion.''
The guidelines are so controversial that Attorney General Richard Blumenthal has intervened. His office is now investigating whether the group that wrote the guidelines, the Infectious Diseases Society of America, is a monopolistic organization trying to shape treatment of the tick-borne disease without allowing other treatment options to emerge.
"It's a medical issue but also a patient issue,'' Blumenthal said. "Their guidelines limit very severely the types of diagnosis and treatment available to patients. In a way, that's anti-competitive.''
The national guidelines issued by the Infectious Diseases Society of America recommend that doctors give patients with Lyme disease 10 to 28 days of oral antibiotics to treat the disease, with another month allowed for persistent symptoms.
But the guidelines -- now posted on the Web site of the Centers for Disease Control and Prevention -- deny the existence of chronic Lyme disease, saying there's no medical evidence that the bacteria that causes Lyme survives antibiotic treatment.
It also emphasizes using either the characteristic bull's-eye rash or blood tests to help correctly diagnose the disease -- two methods Lyme activists say can lead to Lyme cases being missed.
Diana Olson, spokeswoman for the infectious diseases society, said the 14 doctors who worked on the guidelines -- led by Dr. Gary Wormser, an infectious disease specialist at Westchester Medical Center/New York Medical College -- studied more than 400 published medical reports on Lyme disease before coming to their conclusions.
"This is the best science has to offer,'' she said.
Olson said the society could not take into account things like patients' anecdotal accounts of their Lyme disease treatment in writing the guidelines. Nor, she said, did it concern itself with whether insurance companies would pay for treatment outside those guidelines.
She also said that guidelines are just that, and that patients and doctors are free to find different treatments that work best for them.
She also said the society is cooperating fully with Blumenthal's office.
"In our experience, we've never heard of this kind of investigation,'' she said. "But we stand behind our methods and our recommendations.''
But Lyme activists and doctors who support a more liberal approach to treating the disease said the new guidelines are highly restrictive, not allowing doctors any latitude in treatment.
Perhaps the most contentious point is whether chronic Lyme disease even exists.
Many Lyme patients and their doctors contend the standard treatment for Lyme disease sometimes fails, or never gets administered to begin with.
When that happens, they say, the bacterial spirochete that causes the disease can re-emerge in the body, causing a bewildering array of symptoms -- including arthritis, chronic fatigue, heart problems, memory loss, depression, and neurological disorders including loss of sight and hearing.
To treat these symptoms -- and those of several other tick-borne illnesses, which can overlap -- these doctors recommend several months or even years of antibiotics, often using a mix of drugs.
The infectious disease society, however, said that these symptoms are "nonspecific'' and associated with many other illnesses, not Lyme infection. They also caution that there are medical problems -- including the development of drug resistance -- that should lead patients to avoid long-term antibiotic care whenever possible.
But Phillips of Ridgefield and Stricker of San Francisco said this approach ignores the hundreds of studies that now show the Lyme bacteria can bury itself in muscle tissue, lie dormant, then re-emerge.
"There (have) been 18,000 papers published on Lyme disease,'' Stricker said. "So saying you're looking at 400 means you've only looked at 5 percent of the research."
"The evidence just continues to grow and grow on this,'' Phillips said. "To ignore a whole section of this research, as if it doesn't exist, raises questions for me.''
Because of the prestige the infectious disease society carries, Lyme activists say insurance companies will now be even more adamant about refusing coverage beyond 28 days of antibiotics -- something, they say, that has already begun.
They also say the new guidelines will stifle new treatments, because doctors will fear they'll be disciplined if they step beyond the guidelines.
"This isn't theoretical,'' Blumenthal said. "It will come down to a matter of dollars and cents.''
Contact Robert Miller
at bmillernewstimes.com
or (203) 731-3345.
Nov 28 2006 6:39 AM
Lyme disease activists to protest
By Robert Miller
THE NEWS-TIMES
Area Lyme disease activists, dismayed by recently released treatment guidelines for the illness, will go public with their protest Thursday, rallying at Westchester Medical Center/New York Medical College in Valhalla, N.Y., where the lead author of the guidelines works.
"They're highly restrictive,'' said Dr. Steven Phillips, a Ridgefield physician who is the former president of the International Lyme and Associated Diseases Society. "I just cannot understand why they've chosen to ignore all the data on this.''
"They were worse than we expected,'' said Maggie Shaw of the Newtown Lyme Disease Task Force.
"In a word, I think they're a disgrace,'' said Dr. Raphael Stricker of San Francisco, who is the current president of ILADS. "They're not relying on best science. They're relying on their opinion.''
The guidelines are so controversial that Attorney General Richard Blumenthal has intervened. His office is now investigating whether the group that wrote the guidelines, the Infectious Diseases Society of America, is a monopolistic organization trying to shape treatment of the tick-borne disease without allowing other treatment options to emerge.
"It's a medical issue but also a patient issue,'' Blumenthal said. "Their guidelines limit very severely the types of diagnosis and treatment available to patients. In a way, that's anti-competitive.''
The national guidelines issued by the Infectious Diseases Society of America recommend that doctors give patients with Lyme disease 10 to 28 days of oral antibiotics to treat the disease, with another month allowed for persistent symptoms.
But the guidelines -- now posted on the Web site of the Centers for Disease Control and Prevention -- deny the existence of chronic Lyme disease, saying there's no medical evidence that the bacteria that causes Lyme survives antibiotic treatment.
It also emphasizes using either the characteristic bull's-eye rash or blood tests to help correctly diagnose the disease -- two methods Lyme activists say can lead to Lyme cases being missed.
Diana Olson, spokeswoman for the infectious diseases society, said the 14 doctors who worked on the guidelines -- led by Dr. Gary Wormser, an infectious disease specialist at Westchester Medical Center/New York Medical College -- studied more than 400 published medical reports on Lyme disease before coming to their conclusions.
"This is the best science has to offer,'' she said.
Olson said the society could not take into account things like patients' anecdotal accounts of their Lyme disease treatment in writing the guidelines. Nor, she said, did it concern itself with whether insurance companies would pay for treatment outside those guidelines.
She also said that guidelines are just that, and that patients and doctors are free to find different treatments that work best for them.
She also said the society is cooperating fully with Blumenthal's office.
"In our experience, we've never heard of this kind of investigation,'' she said. "But we stand behind our methods and our recommendations.''
But Lyme activists and doctors who support a more liberal approach to treating the disease said the new guidelines are highly restrictive, not allowing doctors any latitude in treatment.
Perhaps the most contentious point is whether chronic Lyme disease even exists.
Many Lyme patients and their doctors contend the standard treatment for Lyme disease sometimes fails, or never gets administered to begin with.
When that happens, they say, the bacterial spirochete that causes the disease can re-emerge in the body, causing a bewildering array of symptoms -- including arthritis, chronic fatigue, heart problems, memory loss, depression, and neurological disorders including loss of sight and hearing.
To treat these symptoms -- and those of several other tick-borne illnesses, which can overlap -- these doctors recommend several months or even years of antibiotics, often using a mix of drugs.
The infectious disease society, however, said that these symptoms are "nonspecific'' and associated with many other illnesses, not Lyme infection. They also caution that there are medical problems -- including the development of drug resistance -- that should lead patients to avoid long-term antibiotic care whenever possible.
But Phillips of Ridgefield and Stricker of San Francisco said this approach ignores the hundreds of studies that now show the Lyme bacteria can bury itself in muscle tissue, lie dormant, then re-emerge.
"There (have) been 18,000 papers published on Lyme disease,'' Stricker said. "So saying you're looking at 400 means you've only looked at 5 percent of the research."
"The evidence just continues to grow and grow on this,'' Phillips said. "To ignore a whole section of this research, as if it doesn't exist, raises questions for me.''
Because of the prestige the infectious disease society carries, Lyme activists say insurance companies will now be even more adamant about refusing coverage beyond 28 days of antibiotics -- something, they say, that has already begun.
They also say the new guidelines will stifle new treatments, because doctors will fear they'll be disciplined if they step beyond the guidelines.
"This isn't theoretical,'' Blumenthal said. "It will come down to a matter of dollars and cents.''
Contact Robert Miller
at bmillernewstimes.com
or (203) 731-3345.