[Don Rodricks - columnist for Baltimore Sun - also has a midday radio show - this is from his Baltimore Sun Blog]
Note: polemic: attack on other opinions on a particular topic - controversial Ann-OH
A polemic on Lyme Disease [By Don Rodricks]
Before Wednesday's radio show, I watched on DVD Under Our Skin, the film about Lyme disease by Andy Abrahams Wilson, the brother of a woman who has the disease.
Wilson was a guest on Midday today by telephone from California. (You can listen to a podcast of the show by visiting the WYPR web site.)
Wilson's film will be screened at The Senator Theater in Baltimore, starting Friday. You can get information about screenings on the film's web site.
Wilson has made a compelling and disturbing film, and it is beautifully shot, with a strong musical score -- and no narration, and the lack of narration is not a plus.
Without the voice of a story-teller, Wilson moves the camera from Lyme sufferer to Lyme sufferer, from doctor to doctor (including one researching Lyme in the basement of his house) to the occasional (dismissively quoted in brief) expert at Yale or UConn -- no one from Johns Hopkins --
back to the sufferers, and then there are collages of people -- never identified -- who claim they suffer from "chronic Lyme disease" and that their doctors either refused to treat them for it or told them they needed to see a psychiatrist.
This is not a documentary. A documentary suggests journalism. There's not much in the way of journalism here, nothing you might call objective, detached, skeptical inquisition.
The New York Times refered to Under Our Skin as a polemic, and that's exactly it. Wilson's targets are the doctors and research scientists who say there is no evidence that Lyme disease is chronic and who believe that long-course antibiotic treatments have not been proven effective in arresting the disease and making its victims healthy again.
The film sets out to discredit the Infectious Diseases Society of America, which has declared that chronic Lyme disease does not exist.
Wilson's claim that the doctors who wrote the IDSA's treatment guidelines for Lyme have conflicts of interest is just that -- a claim, and the charge is not effectively supported.
Under Our Skin is full of suspicions, assertions and anecdotes; it's low on science and objectivity. That doesn't work -- in fact, borders on irresponsible -- when you're telling a medical story.
This is the kind of media "coverage" of Lyme disease that the New England Journal of Medicine criticized in a 2008 article:
"The media frequently disregard complex scientific data in favor of testimonials about patients suffering from purported chronic Lyme disease and may even question the competence of clinicians who are reluctant to diagnose chronic Lyme disease.
All these factors have contributed to a great deal of public confusion with little appreciation of the serious harm caused to many patients who have received a misdiagnosis and have been inappropriately treated."
Had Wilson presented the controversy over whether Lyme is chronic and whether long-term use of antibiotics is effective -- had he explored that and presented both sides -- then I would call his film a public service.
In that it draws attention to Lyme disease, the most common vector-borne disease in the nation and spreading each year as ticks bite into humans, Under Our Skin deserves props.
But it takes a long detour to defend what current credible science dismisses and in the process pretty much goes off a cliff.
If you see the film, make sure you read the following excerpts of letters I received early today in preparation for the radio show.
The first is from Dr. Paul G. Auwaerter, clinical director of the Division of Infectious Diseases at Johns Hopkins University School of Medicine, and the second is from Diana Olson, vice president of communications for the IDSA.
Dr. Auwaerter, of Hopkins:
"I see the effects of misdiagnosed Lyme disease frequently (as patients actually have conditions such as fibromyalgia, multiple sclerosis, Parkinson's Disease, and many others) who are not well served by taking antibiotics for months and years for fears of persistent infection that are not substantiated by any good evidence.
Well-controlled scientific studies have not shown any durable benefit from long-term antibiotics compared to placebo, and importantly these studies show rates of improvement in the placebo arm of 30 percent or higher.
therefore, ask for proof from these people that they are doing better than 30 percent with their treatments. They may say so from a testimonial basis, but they have no evidence published in quality medical journals."
Ms. Olson, quoting from a recent letter on Lyme disease from IDSA:
"The concept of Lyme disease as a chronic condition requiring long-term antibiotic therapy is not shared by the vast majority of the medical community and relies on questionable scientific evidence.
Furthermore, long-term antibiotic therapy poses substantial risks to the community and the patient and can even be fatal.
Lyme disease is a real and growing public health threat. Patients with Lyme disease are frequently misdiagnosed. However, IDSA's concern is with the concept of chronic Lyme disease.
Self-described ``Lyme-literate'' clinicians believe that the Lyme disease bacteria, Borrelia burgdorferi, can survive conventional antibiotic therapy (usually 10 to 28 days of oral antibiotics) and become a chronic infection.
Therefore, they claim, patients must take antibiotics for months or even years in order to fully eradicate the infection.
The vast majority of scientific evidence does not support this view. Not a single well designed, reproducible study to date has found B. burgdorferi in human patients following conventional antibiotic therapy.
Some patients do improve while taking long-term antibiotics. But in studies sponsored by the National Institutes of Health, patients receiving placebo improved at about the same rate as those receiving antibiotics.
Also, some antibiotics have anti-inflammatory or neuroprotective ``feel-good'' side effects. These properties are likely responsible for the improvements some patients experienced in some studies.
In addition to providing no proven benefit, the risks of exposing patients to long courses of antibiotics are substantial. Patients often experience adverse reactions to the drugs.
In fact, some of the symptoms that the ``Lyme-literate'' community attributes to chronic Lyme disease, such as fatigue and mood swings, may be adverse reactions to the antibiotics.
In addition, infections in the catheter used to deliver intravenous antibiotics are common and have led to life-threatening bloodstream infections.
There are many anecdotal accounts of serious adverse reactions. In addition, according to one report published in the peer-reviewed literature, a 30-year-old woman died from an infected catheter after undergoing inappropriate intravenous antibiotic therapy for more than two years.
The risks of inappropriate antibiotic therapy go beyond the individual patient. Antibiotic-resistant ``superbugs'' such as methicillin-resistant Staphylococcus aureus (MRSA) are on the rise in part because of the inappropriate use of antibiotics.
Long-term antibiotic therapy for Lyme disease only makes the problem worse, without any evidence of benefit.
Many patients credit long-term antibiotic therapy for their miraculous recoveries from debilitating fatigue, pain, headaches, concentration problems, and other symptoms.
There is no doubt these patients were suffering. But the question is whether Lyme disease was responsible for their suffering.
Several studies from Lyme disease clinics at major universities have found that most patients who came to these clinics with a previous diagnosis of chronic Lyme disease did not have Lyme disease at all, but actually had something else, such as rheumatoid arthritis or other autoimmune disorders, fibromyalgia, or depression--conditions that need treatment with something other than antibiotics.
Diagnosing patients with subjective, nonspecific symptoms such as fatigue, pain, and difficulty concentrating can be a difficult and frustrating experience for both the patient and the clinician.
Most frustrating are the cases that don't have a clear cause after a thorough examination and an exhaustive battery of tests.
IDSA does not have all the answers for why some patients are suffering. Even in the 21st century, medicine is sometimes an inexact and imperfect science.
When patients are left seeking answers, a window of opportunity opens for unscrupulous clinicians.
These clinicians can earn substantial amounts of money administering long-term antibiotic therapy.
Many ``Lyme-literate'' clinicians back up their diagnosis with tests that are unproven or have not been approved by the Food and Drug Administration for that purpose--a practice that has drawn a warning from the Centers for Disease Control and Prevention. (See http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5405a6.htm.)
For vulnerable patients, the diagnosis feels like deliverance from their suffering. For far too many patients, the diagnosis is false.
If sound evidence emerges that Lyme disease is a chronic condition that can be successfully treated with long-term antibiotics, IDSA would gladly accept it, if it would help physicians treat their patients.
The burden of proof rests with those who make this claim. Until more reliable evidence emerges, IDSA regards the theory of chronic Lyme disease infection as speculative at best, and we consider long-term antibiotic therapy to be more harmful than beneficial.
Lyme and other tick-borne diseases are a serious and growing public health threat, and we support efforts to improve prevention and education and foster appropriate research.
However, news coverage that support the theory of chronic Lyme disease and long-term antibiotic therapy is not in the best interest of patients or public health.
Posted by lymie_in_md (Member # 14197) on :
How do you convince someone who wants to look at the world with rose colored glasses. And a society which wants to just agree, because it is not their issue.
I believe this individual "Don Roddrick" to be a coward. In his own back yard this lazy journalist could easily see some of the folks on the video, if he chose to! And interview them if he chose to! Instead he appeared to talk to one Hopkins doctor and formed an opinion. And because of his laziness he chose not to interview with any of the folks on the video.
If we attack the media, it is for their cowardous and laziness. And because of both they distort the facts and in actuallity distort jounalism by covering only one side of the story.
I suggest anyone on the video call this individual and let them know how the medical system failed them.
But what good would that do, would he write a retraction? I'm guessing not, again he's a coward and the facts don't really matter to him. Instead, he complained about journalism in the movie. I complain about his ability to promote journalism within his own profession.
Posted by kam (Member # 3410) on :
Thanks for letting us know. I wrote a comment. Hoping he will read Pam's book.
Posted by Leelee (Member # 19112) on :
Good grief! Of course I completely disagree with that columnist.
I think the movie provided a valuable educational service and I am getting better on abx.
Posted by Tincup (Member # 5829) on :
Lymie in MD is right... "Instead he appeared to talk to one Hopkins doctor and formed an opinion."
That is the history of the Baltimore Sun regarding Lyme... a LONG and VERY bad history.
It does appear they are too lame to actually research the topic before plastering that kind of junk in the public's face.
And when I and others have presented the actual facts and documentation, they were not only rude and ugly, they refused to even consider it.
So much for allowing no biased reporting.
The last BAD article I remember was using Ho Ho HOpkins as its source and was written by a woman who could have cared less about people, or their kids, or their health.
I tried to work with her and she turned out to be a total toad... and she was out for only her own self.
She wasn't even a reporter.. but some kind of computer nerd there... and was side lining by writing an article.
In the past...
The IDSA/Hopkins ducks have marched in the Sun's office in person (madder than a bee stuck in a bottle) and DEMANDED equal time in the paper when we had a decent article slip by and make it in there.
It was about our protest in NY... against the IDSA guidelines.
And the funny thing was, had the ducks left it alone, their own employees at Hopkins wouldn't have written in to the paper to kick Hopkins IDiot ducks even more!
And I really believe the Sun will NOT admit they are wrong.. at least they never have in the past concerning Lyme.
They just heap bad info on top of bad info.
So it seems we are dealing with old stubborn mules with blinders on who really don't care about Lyme or those who suffer... just other things that will pad their old bank accounts.
It is as if the Sun were Hopkin's personal mouth piece... and this shameful junk is yet another example.
But then, the last time I saw the Sun paper at the bottom of a bird cage, it was splattered with Hopkins ads promoting Hopkins.
Money talks I guess, especially when the Sun was having bankruptcy stuff going on.
One good thing...
When garbage like this comes out... even those who don't know Lyme personally DO know someone who does have it now...
And because they do... they write all that Hopkins/IDSA garbage off as hog wash.
Actually Ho Ho Hopkins and the IDSA ducks are doing us a favor by being in the press with that stupid stuff they promote.
It just makes THEM look more and more stupid as the months go by.
We don't have to say anything... they are digging their own graves.
Posted by Toppers (Member # 20083) on :
What if this author is right and we are wrong?
Posted by [email protected] (Member # 20152) on :
I think the review of Under Our Skin was mostly fair. The film is one-sided, it tells 'the other side of the story' primarily, which does not devalue the film, in my opinion.
Posted by lymie_in_md (Member # 14197) on :
What are they right about?
What are we wrong about?
Could you be more specific!
I know some of the people in the Video one of which lives very close to the Baltimore Sun. He was never contacted and I'm sure he would have given the reporter quite an ear full. In a matter of fact none of the lyme support groups were ever contacted by the sun. But it took no time to find a hopkins duck swimming in the baltimore pond.
So tell me Topper, we heard from one of the ducks, but no interviews from any of those on the video. The journalist even questioned whether these are living and breathing people.
And is it difficult to find a lymie? I think not! In the maryland area you can't swing a dead cat without hitting one.
So lets again state: "The Baltimore Sun" is bereft of any journalistic integrity. If they had integrity they would have interviewed several folks with lyme to balance out there story. One side stories are just biased reporting.
Posted by Toppers (Member # 20083) on :
All this stuff he says about the benefits of antibiotics we feel are from the abx themselves, and how harmful abx are longterm and of little value.
Posted by lymie_in_md (Member # 14197) on :
The review isn't fair! If it were fair, it would never have chosen a side. The article chose a side and determined the IDSA is the authority and the patients featured in the film didn't exist. A review shouldn't be an editorial. A review of a film should be the entertainment value such as too long or boring or was riveting with excitement. This review chose a side, against the patients.
The interviewer made this statement: "But it takes a long detour to defend what current credible science dismisses and in the process pretty much goes off a cliff."
Read that statement long and hard, it is what is wrong with the review, which is no longer a review but some pundit like dismissal of all the sick people's complaints to support their sponsor, the shills, ducks, or quacks at hopkins.
Posted by bettyg (Member # 6147) on :
Nasty Baltimore Sun Blog KrisKraft LymeNet Contributor Member # 4329 posted 09-07-2009 08:39 AM
BETTY NOTE: i'm breaking up the long paragraph into many short ones for us NEURO lyme folks!
Excerpt from Dan Rodrick's blog on Lyme disease:
"If sound evidence emerges that Lyme disease is a chronic condition that can be successfully treated with long-term antibiotics, IDSA would gladly accept it, if it would help physicians treat their patients.
The burden of proof rests with those who make this claim.
Until more reliable evidence emerges, IDSA regards the theory of chronic Lyme disease infection as speculative at best, and we consider long-term antibiotic therapy to be more harmful than beneficial.
Lyme and other tick-borne diseases are a serious and growing public health threat, and we support efforts to improve prevention and education and foster appropriate research.
However, news coverage that support the theory of chronic Lyme disease and long-term antibiotic therapy is not in the best interest of patients or public health."
-------------------- KrisKraft www.lymediseasefilm.com Posts: 226 | From Palo Alto, CA USA | Registered: Jul 2003
Tincup Frequent Contributor (1K+ posts) Member # 5829
several years ago....
When a bus load of patients was headed to NY to protest the IDSA Lyme Disease Guidelines, there was an Editorial in the Baltimore Sun supporting our efforts.
The IDSA... aka Ho Ho Hopkins... flipped their lids when they saw it.
A couple of ducks (Hopkins/IDSA) marched into the Baltimore Sun and DEMANDED (what impolite bullies they can be) equal time to spew their junk... very much like this stuff.
Well, after their JUNK was published....
It was SO stupid, it was actually funny! I THINK they thought someone would believe them.
Even HOPKINS employees and many others wrote in to tell them their feathers were showing.
Not to worry so much, the Baltimore Sun appears to be a lost cause as far as the truth about Lyme disease goes.
Nobody home upstairs. [Big Grin] -------------------- If takes all the future, we'll live through the past, If the phone doesn't ring, it's me.
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Tincup Frequent Contributor (1K+ posts) Member # 5829
Just for fun... a response that probably won't get posted. It is being "held" to be reviewed before they will allow it to show up. [Big Grin]
Thank you, Mr Rodrick.
It is nice to see the quotes from Johns Hopkins and the Infectious Diseases Society of America (IDSA) posted online for the public to view.
Normally these groups work behind the scenes in the cover of darkness doing their dastardly deeds because their unsubstantiated theories have contributed to an exploding epidemic and countless people suffering, for which they and their Institutions should be held responsible.
But, by sharing their distain for doctors that don't tow the IDSA/Hopkins line and who actually treat people until they are better rather than depending on flawed studies that used flawed tests in the process, a novel idea don't you think,
You have exposed their lack of innovation, their suppression of information and differing view points, and their failure to LISTEN to and LOOK at their mistakes (chronically ill patients) and make better the situation before more suffer and die.
Of course, in Maryland alone, the profits from the flawed tests Hopkins and the IDSA promote and use to support their theories (check and see who holds the patents on them or just ask the CT Attorney General who busted them) would hit them hard if they were to back down now.
If they didn't stand on the bow of their sinking ship screaming at patients that they ARE better after following their IDSA/Hopkins insurance friendly, limited treatment guidelines that promote "cost-effective" antibiotics, the $3 million spent by Maryland residents on these nightmarish Lyme tests each year would dry up.
Ouch on that!
So, perhaps before you jump on board their ship you might consider the other side of the story AND the IDSA's floundering credibility.
It's like mosquitoes that go into a bizarre feeding frenzy after being sprayed with insecticide in order to get that last meal. They are playing out their last hurrah and are using you in the process as a big mouth piece and a wobbly band stand.
Don't believe it? Then ask yourself this.
How many people with cancer would sit back and accept a test that missed 75% of those affected? (Check the 2005 Hopkins blood test study with Auwaerter as a coauthor- talk about insane)
Then ask yourself, should Auwaerter be promoting guidelines (he is also the editor of the highly contested IDSA Lyme treatment guidelines) which state people must have not one, but TWO positive tests to be treated?
Even Gomer Pyle would say, "Well, galllll leeeee" to that!
And maybe look back at a bit of Lyme history when you have time.
You'll discover you are publicly promoting a group that insisted for years that Lyme disease was a virus and NO treatment was necessary, and it would go away on its own.
It was only after "real doctors" discovered it wasn't a virus and antibiotics worked (by trying to help their patients) that things improved.
Of course, the IDSA still dragged their feet not wanting to admit they were wrong. It's that little "law suit thing", you know, which put a big hitch in their giddy-up and keeps them barking up the wrong tree.
Then there are the billions of dollars wasted on "research" that they got from tax payers, as well as other groups.
Since day one it has been hoarded by the IDSA supporters and often used to promote their theories only; shame shame.
But then, I am sure the IDSA authors would be thought less of at their institutions if they were no longer their proverbial cash cows and were the center of attention in even more law suits.
So, now they have no choice but to jump up and down on sick patients heads trying to shut them up.
And shall I mention their failed vaccine?
Over 1,000 adverse event reports were submitted to the FDA by physicians and patients who were negatively affected after receiving their vaccine, BEFORE it was removed from the market and BEFORE the law suits starting rolling in.
It was later deemed ineffective anyhow, so no big loss to the rest of the world by having it disappear, just a loss for the IDSA and their friends bank accounts.
While we are at it, let's address some of their other infamous myths/theories they've generated and supported over the years, for those who don't already know.
It IS possible there may be someone out there who doesn't know better, besides you.
You CAN get Lyme more than once.
You CAN still be actively infected after 2-3 weeks of antibiotics.
All those "weird" symptoms CAN be a part of the Lyme presentation as the organisms travel throughout the body.
You CAN be infected by more than one organism after a tick bite (Babesia, Bartonella, Ehrlichiosis, RMSF, etc).
You CAN have Lyme without having a rash or a positive test. Blah blah blah...
You see Mr. Rodrick, we are not just a few "crazy" patients who have Lyme disease and then develop some mysterious "disease" after taking their handful, or in some cases, their recommended ONE antibiotic pill, and having it fail to cure us.
We are growing in numbers and our kids are being negatively affected to the worst degree.
Shame shame on those responsible and those who support them!!
IDSA/Hopkins can no longer continue to sweep us all under the rug and keep us out of site.
Their "failures" wised up and sought additional treatment from doctors who actually follow their oath to "First, Do No Harm", and low and behold, their treatment worked!
We are now getting better with proper treatment and we are here to say to the dwindling number of Hopkins and IDSA representatives responsible for denying us treatment to STOP the madness, get over yourselves and move forward in the PATIENT'S best interest.
Or just go away and leave us alone!
You must STOP the war you keep fighting and put your efforts into treating people successfully for their active infections.
-------------------- If takes all the future, we'll live through the past, If the phone doesn't ring, it's me.
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lou Frequent Contributor (1K+ posts) Member # 81
posted 09-07-2009 05:49 PM
It was nasty and not in character for this journalist. Do you suppose the Sun has given its employees a party line from which they shall not deviate? That certainly seems to be the case with NY Times and Wash Post.
And BTW, they did put your message on the blog site. Posts: 6487 | From Not available | Registered: Oct 2000 |
TINCUP, CAN YOU HEAR MY STANDING APPLAUSE? my hat is off to you, now take a deep bow!!
TINCUP ROCKS! just love your sense of humor, and it was fun reading your duplicate post above so i could enjoy your comments again my friend [Smile] lol
lou, thanks for telling us it's posted, will look at this late tonight! [group hug] [kiss]
tincup, you may eat your hot fudge sunday now [Smile]
Posted by bettyg (Member # 6147) on :
on this 1st bit of info, i'll start a new post, but wanted you all to be aware of this NEW news also...
Andy Abrahams Wilson and Kathy Fowler were on a show with Dan Rodricks a host of a Baltimore NPR station.
[ 07-11-2009, 03:19 PM: Message edited by: bettyg ]
Posted by lymie_in_md (Member # 14197) on :
Thanks Betty -- Can't wait to sharpen my fangs or toxifying my poison pen. I find it really irritating when supposed journalists do such shoddy work at the expense of the people.
I think the world of the work done in "Under our Skin". And especially the people who are in the film, some of whom I know personally. This film wasn't to be a documentary. It was to present the conflict that exists in the lyme world, and why.
I believe the film elevates societies conscious to the potential epidemic that might ensue. Is it a call to arms -- you bet. It seems only the lyme community grasp this ramification, but the film explains a great deal. Of the population if it is .1% that are chronic with lyme now, imagine 10%. What percentage of the population need be disabled before critical products and services are interupted.
Our politicians I believe are starting to understand some of these demographic issues. And it doesn't hurt to remind them!
Posted by bettyg (Member # 6147) on :
bob,
listen to the 1 hr. interview first then reread the article; i had neighbor's BARKING CONTINUOUS DOG for all of it so wasn't able to concentrate on it that well.
go get em tiger! hugs
Posted by Tincup (Member # 5829) on :
BG...
Please edit long link so the post can be read.
Thanks!
Posted by sizzled (Member # 1357) on :
The Sun still thinks the world is flat!
"No scientific evidence of Chronic Lyme Disease".
Posted by lymie_in_md (Member # 14197) on :
Betty -- I listened to the entire interview, Mr Rodricks comment at the very end is the one that is the most disturbing.
Though Kathy Fowler has suffered with a condition she finally determined to be lyme and became convinced of her condition.
Rodrick simply stated about her condition as "to whatever it is you have". Listen to this dismissive comment, I'm curious how you all feel about it. I know it angered me a great deal!!!
Posted by bettyg (Member # 6147) on :
bob,
also the dig to andy, do you know MORE than the chief director of infectious disease at john hopkins??
i relistened to it all today when i got on here, and his tone throughout the entire thing was so prejudiced!
yes, i didn't like the ending at all.
to all, i just copied the entire post to ACTIVISM post started by KRIS KRAFT, and ALL 42 COMMENTS broken up so we can read them !! uffda
i haven't written yet; i'm too pooped after all the breaking up of those comments especially baker's HOG WASH all as one long paragraph!
tincup, i showed tinyurl, but my pc had no problem; just normal width! go figure lol
Posted by randibear (Member # 11290) on :
there is absolutely nothing worse than a journalist with a closed mind...
Posted by LisaS (Member # 10581) on :
How can hw say it's just a claim that the IDSA panelists had a conflict of interest? Obviously he doesn't know they have been investigated...
Posted by bettyg (Member # 6147) on :
lisa, he knows; he's chosen sides and it's evident in radio interview w/andy, kathy fowler, & idsa vet he did earlier in the day then wrote this garbage above!! ***********************************************************
Posted by lou (Member # 81) on :
Apparently he has just sold out. So much for journalistic ethics.
When newspapers do this kind of thing, and it happens disturbingly often, why do they wonder about their current difficulties? They are not all caused by losing ad revenue, but losing credibility with the public for such junk.
Here is an address for the radio station that hosts the Rodricks program. Please be polite when you register your complaint about this show:
Anthony Brandon, President & General Manager [email protected] Posted by lymie_in_md (Member # 14197) on :
Thanks Lou -- just sent my comment. But I will say, it was extremely difficult to be civil.
Posted by bettyg (Member # 6147) on :
for those of you who don't go to activism,
nenet posted that YOU TUBE HAS SUSPENDED UOS TRAILER for there!! it stated they violated rules!!
she/i both emailed andy wilson to let him know about this!
THEY violated rules!! i don't think so!!
Posted by JR (Member # 16898) on :
Well- These two reviews should swing the balance in our favor...
From Washington Post.
The documentary "Under Our Skin" makes a powerful argument. To wit: that Lyme disease, contrary to much that has been reported about it, is neither rare nor easily treatable. Given that its often multifarious symptoms (swollen joints and joint pain, fatigue and weakness, headaches, blurred vision, memory loss, mood changes and other cognitive problems, skin rashes and other manifestations) can sound like the results of ordinary wear and tear on the body, this is not a movie for hypochondriacs.
It is also the reason, at least as advanced by filmmaker Andy Abrahams Wilson, that the disease frequently is overlooked by its sufferers or misdiagnosed by the medical profession. Add to that the possibility that the bacteria that causes Lyme can hide in the body, and the fact that some doctors don't even believe that a chronic form of the illness exists, and you've got a compelling reason why the more than 20,000 new cases reported each year could actually be closer to 200,000. Which would make Lyme disease, as the film points out, more prevalent than AIDS.
It's a scary thought. But it's only one of many scary thoughts in a movie that, like a well-made thriller, gets under your skin.
Does Wilson have a bias against Lyme-denying MDs who dismiss sufferers' complaints as all in their heads? Against an insurance industry that he claims denies coverage to save a buck? Against funding agencies that won't pay for research because the disease is more controversial -- and less sexy -- than others? You bet he does.
"Under Our Skin" has a major ax to grind, but if even half of what it alleges is true, it's more deeply terrifying than any slasher film you'll ever see.
-- Michael O'Sullivan (June 26, 2009)
Contains disturbing images of human suffering.
________________________________________________
And this from The Baltimore Sun
Under Our Skin is a documentary wake-up call.
This compelling account of the explosive growth of Lyme disease grows to encompass all the peculiar politics, corruption and inertia of American medicine.
Everyone agrees that the tick-borne disease is "the great imitator," mirroring a multitude of ailments, including fibromyalgia and Parkinson's disease.
But the ideas that Lyme disease can be chronic and that its treatment should go on for months or years have become points of controversy for physicians, insurers, and research funders.
They have also become matters of life and death for patients whose doctors close their practices in the face of professional threats and punishments.
Wherever you fall in the debate, you should find Under Our Skin a troubling group portrait of confusion and anguish. It makes a persuasive demand for more flexibility and real-life documentation in the definition and tracing of the disease.
Lyme disease has proved hard to diagnose and treat even in its most flagrant, short-term form. To flesh out its symptoms for novices - and to offer the comfort of shared knowledge for its victims - director Andy Abrahams Wilson has interviewed Lyme disease sufferers of all ages, from every part of the country. Many testify to the success of physicians who prescribe long-term regimens that include intense antibiotics.
Wilson gets at what's infuriating about the public discussion of Lyme disease. Academic and institutional authorities stigmatize patients as psychosomatics and condemn dedicated medical professionals as mercenaries or showboats for believing in a chronic form of Lyme disease. Journalists often fail to note the connections of these same authorities to companies that might prosper from the disease through the development of new vaccines and tests.
Although Wilson has been criticized for portraying the glory of the American countryside from the Hamptons to the Rockies, the visual beauty of the film underlies its most haunting theme. The closer humans get to nature, the more sensitive they must become to its hidden dangers. Under Our Skin details a medical nightmare. The movie only looks like a sun-kissed dream.
Under Our Skin (Shadow) A documentary about Lyme disease by Andy Abrahams Wilson. Exclusively at the Senator. Copyright � 2009, The Baltimore Sun
Posted by bettyg (Member # 6147) on :
i got this from andy wilson just now...
quoting him
The account was suspended because we were showing news clips featuring UOS. We believe this is protected under "fair use" laws and we'll look into the matter.
Best,
Andy ____________________ Andy Abrahams Wilson Executive Director/Senior Producer Open Eye Pictures, Inc.
Posted by Tracy9 (Member # 7521) on :
What placebo effect???? I'm on long term abx and I haven't experienced a placebo effect.
I'll take a placebo effect if it makes me feel better! Show me anyone feeling better with a placebo effect, because I've never met them!
Posted by bettyg (Member # 6147) on :
jr, thanks for wonderful comments on above articles.
could you post the direct links of each so we can send feedbacks to both newspapers on GLOWING reviews?
big thanks! hugs
Posted by Tincup (Member # 5829) on :
OUCH OUCH on the IDSA... and the ducks at Ho Ho Hopkins!
So far news reports of this movie and problems about Lyme in Baltimore and the rest of the state (home of some of the IDSA idiots)...
Has been on TV Channels 2, 11, 13 and 45 news. ALL of them!!!
Some stations have showed their stories at night and again in the morning to be sure everyone sees it!
AND.... it has been written about in multiple news papers across the state.
AND.. I heard good things were said on radio stations too!
I wonder if the ducks feel like their dirty under pants are showing for the whole world to see?
I KNOW.. I shouldn't laugh. Bad Tincup.
But I can't help it.
It's about time they were exposed.... in the raw.... in their birthday suits.
I'm getting calls from folks I haven't heard from in a blue moon... all wanting to tell me about what they saw or heard.
Thank you Andy, KrisKraft and all who made this movie possible.
WAY TO GO!!!
Posted by seekhelp (Member # 15067) on :
What lost me in the movie is how some researcher working out of basement can see and prove the existence of the bacteria, while all these world-class IDSA professors/mainstream labs can't find it.
I'm not referring to the brain biopsy part.
Much that journalist said is biased, crude statements, but other things could be true. Regardless, it could have been told much more fairly/politely from their side.
I personally just don't care about this whole IDSA conflict of interest debate that was the core of UOS. Equate this into how many millions Shapiro, Steere and others are really making currently for their efforts. I do completely believe the insurance companies have a lot at stake with respect to IV Abx treatment only.
Posted by lymie_in_md (Member # 14197) on :
seekhelp, Dr. Alan MacDonald is a world class researcher more so then those IDSA profiteers. That is his night job, but he has been researching lyme for a long time. We are so fortunate to have his scientific research help to help us better diagnose and treat this disease.
look at the following link for Dr. MacDonalds day job.
As far as the conflict of interest, are you kidding me. Here we have people who took a public oath for the interest of the public first. Now, allowing the public to suffer in order to make millions on vaccines or to protect their insurance company buddies.
We sooooo need to shut down insurance companies and the IDSA. They are destroying health care for the public.
Posted by nomoremuscles (Member # 9560) on :
quote:Originally posted by seekhelp: What lost me in the movie is how some researcher working out of basement can see and prove the existence of the bacteria, while all these world-class IDSA professors/mainstream labs can't find it.
I'm not referring to the brain biopsy part.
Much that journalist said is biased, crude statements, but other things could be true. Regardless, it could have been told much more fairly/politely from their side.
I personally just don't care about this whole IDSA conflict of interest debate that was the core of UOS. Equate this into how many millions Shapiro, Steere and others are really making currently for their efforts. I do completely believe the insurance companies have a lot at stake with respect to IV Abx treatment only.
The problem here is that these people, IDSA, have had thirty years to research chronic Lyme, and rather than try to find out what, exactly, is happening, they churn out the same thing over and over -- denialist papers that protect their positions and guarantee the research money keeps rolling in.
If they are so sure there is a post-Lyme syndrome at work here -- and are not actually lying about this -- why then haven't they been trying to figure out what this syndrome is? What causes it? And how it can be treated? Why have there been no studies on the way this infection, when chronic, or post-Lyme if you prefer, affects the immune system, looking at specific markers -- trying to identify what these patients have in common, and then testing how they respond to various treatments?
If this "post-Lyme" is indeed the problem, which they continually insist it is, why have they not taken the next step and worked to pin down the specifics and then move the science forward??
It does not make sense.
Unless, of course, they know they F-ed up from the beginning.
They've had the ball all this time, and instead of moving it forward they have worked to protect their positions. Why? What have they done, research-wise, that is of any help to patients?
Tell me one thing.
Posted by seekhelp (Member # 15067) on :
I'm not saying Alan MacDonald is not great at what he does. I'm questioning why he has gained no respect from the IDSA if his credibility is so high? I have not heard an IDSA doc talk about the cyst form of Lyme even though Mr. MacDonald supposedly proved it in pictures. How can you dispute picture proof? Why won't Steere, Shapiro and others give grant money to MacDonald to further his research?
Vaccines a profit center for IDSA members? I thought these were OFF the market years ago. Can't make $$$ on what's not for sale, right? I'm lost there.
Perhaps there are patents filed by current board members? If so, for what? How does the denial of Bb help anyone profit except for insurers?
Oral Abx for the most part are cheap compared to other disease treatments insurers pay for. Peanuts really. Peanuts x millions of patients gets more expensive, but a few MRIs easily paid for by insurers far surpasses oral Abx so don't buy that yet. Move on to IVs, IVIG, and other high-cost treatments and yes, the potential liability is much higher.
No new diagnostic tests are being released so that angle isn't working. I can't see through all these claims at times and put it together into a meaningful story.
If big insurers are lining these individuals pockets will millions for saying this disease is a farce, then OK, I buy it. Doesn't anyone have access to IDSA members W-2s? Are these rebels making seven figure incomes? Living life large? Driving Rolls Royces?
The fact IDSA docs are not open to others' theories (like ILADS) is very bad / unprofessional when you admit yours isn't rock solid. I understand this flaw. Hurting / mocking ill people on a presumption is even sicker. I get the resentment from many here and how horrid it is lives are destroyed and these big wigs sit at the top w/o shedding a tear for the chronic Lyme patient who lost their life. I've been a victim too.
Can anyone show me these panel members really are making serious cash (say compared to LLMDs perhaps)? Know what I mean?
I'm trying to separate fact from fiction. UOS did not do that IMO. It portrayed a conspiracy theory about the IDSA's reasons for denying existence of this disease, but the viewer couldn't get proof of how rich these docs got off of this. The story needs closure to have credibility for non-Lyme sufferers.
For example, what patents filed? Why does not acknowledging chronic Bb make them richer? Ego shattering is a good reason for denial of course, but many in medicine have stepped up and admitted mistakes later. UOS implies these are bad, bad people with very clear and calculated intentions. I'm still as a patient trying to step back and ask myself what are they.
Going back to your comment Nomoremuscles, you're right. 30 years of nothing is PATHETIC. We deserve better. Bb patiets are viewed as bottom of the barrel trash not worthy of research because we're mentally ill. There's psychiatrists for people like us.
Why research post-Lyme when so many happy pharmaceutical companies are thrilled to develop Lyrica, Cymbalta, and other wonder drugs to alleviate our issues. The ID docs prefer to let the drug firms dance happy jigs knowing we're making them richer. They going to stab their own funders in the backs and find a cure for a disease / syndrome (if medically possible even) that would cut into profits of drug companies? NOPE. Bank on that.
Lyme patients don't die most times. Death wakes up communities. Muscle aches/fatigue/chills/spasms/anxiety symptoms - minor bothersome symptoms we need to learn how to live with. Action happens when people die. AIDS patients die. Cancer patients die. Lyme patients voice how horrible we feel w/o lab proof. I truly believe that's why researchers don't care as much. It makes me sick honestly. We all deserve a meaningful life and this disease steals it away.
quote:Originally posted by lymie_in_md: seekhelp, Dr. Alan MacDonald is a world class researcher more so then those IDSA profiteers. That is his night job, but he has been researching lyme for a long time. We are so fortunate to have his scientific research help to help us better diagnose and treat this disease.
look at the following link for Dr. MacDonalds day job.
As far as the conflict of interest, are you kidding me. Here we have people who took a public oath for the interest of the public first. Now, allowing the public to suffer in order to make millions on vaccines or to protect their insurance company buddies.
We sooooo need to shut down insurance companies and the IDSA. They are destroying health care for the public.
Posted by bettyg (Member # 6147) on :
did any of you listen to the BS radio show today with dan and paul a..., infectious disease director of JOHN HOPkINS?
i typed some brief summary comments i was able to scribble down on paper.
seek, have you bought PJ LANGHOFF'S, THE BAKER'S DOZEN book all about the IDSA with over 1000 reputable links there REFUTTING things they have said vs. in their scientific papers.
buy it; look there for the answers you are seeking; she did 1 heck of a job. i've got to finish off cure unknown and then go back to pj's book which she has CRAMMED info galore in small print into her book of 570 plus pages!!
Posted by lymie_in_md (Member # 14197) on :
seekhelp
quote:I'm not saying Alan MacDonald is not great at what he does. I'm questioning why he has gained no respect from the IDSA if his credibility is so high?
Yes you are saying Alan MacDonald's work isn't great because he has gained no credibility with the IDSA. Seems to be the litmus test your using for what is good or bad research. Or what is a good or bad movie!
You could prove the world is round a thousand times over. It only matters if people pay attention and choose to listen to your evidence.
The IDSA chose not to listen to the evidence, because it contradicts their position. Haven't you read "Cure Unknown" seekhelp. Their credibility as doctors is questioned if they change their position.
The atty general from Connecticut didn't casually put a anti trust case this organization because there isn't a profit motive.
I think Betty's point of reading "The Baker's Dozen" is a great one.
UOS is a great and couragious work and there are forces who want to sully or discredit it.
Posted by seekhelp (Member # 15067) on :
Betty, I wish PJ's book wasn't so expensive. I'd love to read it someday. It sounds like the background I'm looking for.
Yes, I read Cure Unknown (library had it). Good book. I thought the IDSA is hung up on good science and that's part of the reason they despise ILADS docs. They don't work off science many times. More hunches, clinical Dxes, and unorthodox treatments to try to cover all possible pathogens.
MacDonald's work IS science so the IDSA should be all into that. He's a scientist who is not making money off the sick, right? I'd think they'd be hooking him up with high-tech lab equipment, the world's best researchers, etc. to have him optimize his potential in this area. Steere always says he loves good science.
I guess I'm having a hard time understanding how a national organazation such as the IDSA could be so corrupt to let others suffer. It seems childish and beyond comprehendable.
Posted by nomoremuscles (Member # 9560) on :
quote:Originally posted by seekhelp: I guess I'm having a hard time understanding how a national organazation such as the IDSA could be so corrupt to let others suffer. It seems childish and beyond comprehendable.
I would love to live on the planet where this statement would be true.
Posted by bettyg (Member # 6147) on :
seek,
have your library get THE BAKERS DOZEN by intralibrary loan...always get inter and intra confused.
i got 1 book of someone else that way but limited to ONE WEEK ONLY!! you won't get it all read in that period of time i can assure you but you'll get a head start.
then see if you can borrow it again from there or another library!! AFFORDABLE ... you just pay postage fees for it!
Posted by seekhelp (Member # 15067) on :
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