Tribeca Film Festival- Behind the Screens - "Under Our Skin"- April 27, 2008
Under Our Skin according to imdb :
Arguably the most overlooked and misdiagnosed ailment currently verging on epidemic throughout the United States, Lyme disease and the controversies surrounding its identification and treatment are the focus of this documentary.
Panelists:
Dr. Richard Horowitz., specialist in treatment of Lyme disease
Amy Tan, bestselling author, Lyme Disease sufferer
Andy Abrahams Wilson, Director - Under Our Skin
Moderator:
Robert Bazell
Aaron Dobbs, a programmer for Tribeca Film Festival, is responsible for finding the film Under Our Skin directed by Andy Abrahams Wilson. The director introduced the film by saying that he took quantum leaps along the road of making the film. He couldn’t imagine at the onset of how badly the film really “needed” to be made.
He cited a few tremendous individuals who had contributed to making the film happen.
Kris Newby, the producer, was responsible for researching and finding funding for the project. She also made an appearance in the film, and if he had not mentioned her beforehand, I still would have sensed her passion for the subject from onscreen.
Mandy Hughes and her husband Sean, major characters in the doc, were in attendance. When Andy was putting his feelers out for sufferers to be interviewed, Mandy called the office with the disease’s characteristic slurred speech and expressed that she found it important to record her experience. Despite her husband’s misgivings, her four year-arc from diagnosis to treatment to managing the disease with anti-biotics spanned the course of the film. I admired her bravery and ability to be so vulnerable on film to help us see and learn about not only the affliction itself, but illustrate the long road to recovery in the midst of cultural and academic denial of her condition.
He also acknowledged the editor, Eva Ilona Brzeski, who happened to move to town at just the right time. He also mentioned the non-profit Turn the Corner Foundation, a group in NYC whose mission is Lyme disease awareness. Then finally, the director of course praised Aaron Dobbs, who had singled out and championed the film from the beginning.
I went into this film super curious about what the heck I would need to know about Lyme disease. I knew about the ticks and the New England infections. I thought it wasn’t necessarily that huge of a problem… People could identify the bulls-eye rash, get the pills and get over it, right?
The film started with gorgeous imagery and introduced me to sufferers who all said in one way or another that they went to many doctors, were considered crazy or attention-starved, dropped from their insurance, misdiagnosed and misunderstood. We met some victims, heard from doctors and medical researchers, and the sad state of the health care system in the United States was reinforced. Then we, the audience, were left feeling appalled and disturbed that we aren’t more aggressive about this little Spirochaete costing people their lives.
The discussion afterwards was moderated by Robert Bazell. I know him from NBC Nightly News with Brian Williams and I really wanted to know if he thought all the biotech advertising during his program had any affect on the reporting on such topics.
Four years ago the director didn’t know much about Lyme disease. After many diagnosis, MLS, ALS and finally Lyme, his sister and also a friend in California both got sick, which planted a seed of curiosity about it.
He had no idea how the film would go or what Lyme disease was. To be honest, what drew him in initially was the conspiratorial characteristics of an escaped microbe infiltrating the population. So he put the word out on the Lyme blogosphere where they had clearly tapped into a real need. That’s when Mandy Hughes contacted the office and from there the film gained momentum.
Amy Tan went to 10 doctors for a rash, headache, and neuropathy. She was the one who thought she had psychological problems and that she wasn’t sick. But four and a half years after the infection she was diagnosed with Lyme disease. She went from despair of a future in a wheelchair to back to being a productive individual after treatment.
Dr. Horowitz said that the commonly used test for Lyme has not much more than 50 percent chance of detecting only one particular strain, though many exist. We are in a society of managed care medicine where doctors have less time to spend with their patients to identify the proper patient histories required to nail down the complex organism known to cause Lyme.
Andy said Lyme came at a time in the 70s when medicine was deregulated and politicized. Instead of sharing research; the specifications of Lyme disease became patent protected and the race for the vaccine was on. The surface protein of the micro-organisms had been patented which is just plain nuts.
The Doctor said that the vaccines didn’t even work, people lost their mind, patients got sicker. He refused to give the vaccine to his patients and demanded further research.
The director made a point to not address the psychological symptoms as much as the others since he didn’t want to buy into the stereotype that people with Lyme are experiencing it psychosomatically.
Andy pointed out that the people refusing to acknowledge Lyme’s chronic infection potential did not know or think they were being bad people. They simply had a special interest in Lyme’s economic value, and any time people are doing something in their self-interest, they think they are doing the right thing.
The Doctor reiterated that Lyme is complex as he found that many of his patients were co-infected so he’s developing a format to get a measure of other bacteria, mold and supplemental ailments possibly complicating it further. The population and medical people would want to gloss over and ignore it because it’s too much to absorb.
Amy says none of nature’s interactions are simple. Lyme is this thing that has been unleashed and we can’t go back to a time before it was so rampant. It’s not simple and feels much like Invasion of the Body Snatchers when it happens to you.
The director was driven by the wonder and fascination of the puzzle and hope the film is the beginning of the conversation.
--amp
Labels: amy tan, Andy Abrahams Wilson, behind the screens, kris newby, lyme disease, mandy hughes, richard horowitz, robert bazel, Tribeca Film Festival
4 Comments:
A.M. Peters comments about UNDER MY SKIN were wonderful, and informative.
AMP, note, it's called LYME disease without the "s on it since it was named for Lyme, Conn.
Since she knew nothing about Lyme disease; she came away know the continuous heartaches we with CHRONIC LYME disease go through daily, and decade after decade.
I've had chronic lyme for 38 years; 34 years MISDIAGNOSED by 40-50 doctors and specialists!
I hope the film touched on 300 other illnesses mimick LYME, so it's very hard to get a prompt, ACCURATE diagnosis.
I'm in Iowa, so haven't had the opportunity to see this film yet; but anxiously awaiting it coming to all 50 states in near future!
You learned of the LYME WAR CONTROVERSY: ILADS, good drs., vs. the bad drs., IDSA, who don't believe in chronic lyme, and who treat with under 30 days of antibiotics.
Then you learned our health insurance companies refuse to pay for any lyme appointments, treatments, and other testings involved in seeing what other complications have arose since that tiny, unseen tick bit us!!!
We have to fight the health insurance companies for reimbursement of expenses, and fighting the SSDI, social security disability insurance benefits program to be approved for SSDI benefits!
Lyme disease is cost prohibitive! It's a rich person's disease; not the low income with no funds for the best LLMDS, lyme literate MDs in USA!
Again, AMp; thank you from the chronic lyme community on the accurate write-up you shared above.
We look forward to many more replies to this blog.
We also hope we can get congress to finally PASS our 2 federal lyme bills, S 1708 and HR 741, by getting the bills on their AGENDA to finally speak about them since they are 10 years old there!!!
Please call your state's federal senators and house reps to be CO-SPONSORS on both bills and requesting them to ask for a hearing in near future; thanks all! :) xox
Betty G,
Iowa lyme activist
Excellent write-up! Thank you! This is an historic opening for a much-needed film.
For these diseases to be taking our lives away, one by one, without most of us even knowing we have any diseases, and without the public realizing what's going on, is tantamount to a house being on fire that no one sees or believes.
Can you imagine a fire dept telling callers reporting a house on fire that there's no fire, they must be imagining things, there's no need to put it out, and just to humor you, here's a bucket, and besides, there's no funding. Oh, and also, some folks want to patent the water molecule, so it's not available for general use.
This is one analogy for the devastating state of affairs concerning these diseases for anyone and everyone unlucky enough to be part of the statistical odds that your tick, or ticks, or other insects, or human carriers, contained and transmitted Lyme/coinfections to you. Which if we don't take some action quickly, will include practically every person and animal on the planet.
So, we are currently calling a couple Congressional reps to ask that the Lyme bill, HR 741, be moved up to a committee hearing so that we can get 100 million in funding over five years time for needed research, improved reporting, and education of the medical community and the public.
Please call:
Cong. Dingell (MI), chair, Energy and Commerce - ph 202-225-4071
Cong. Pallone (NJ), chair, House Health Subcommittee - ph 202-225-4671
Energy and Commerce Committee - ph 202-225-2927.
Thank you for taking a couple minutes of your time to call these offices and tell them why you think it's important to fund Lyme disease/coinfetions needs. If you saw the film, you can tell them about it!
Hello,
My name is Linda. I have been bit on 2 seperate occasions by ticks that carried lyme. I had a picc line & am much better but still fight exhaustion.
After seeing Under Our Skin I broke down in tears, it was so moving & painfully true. I submitted info about the film to my local newspaper & it was printed. My own lyme literate physician, Dr. Joseph Jemsek, was featured in the film & was punished by the medical board in my home state of N.C.
I was elated when I received several calls about my article. I wish I could do more with my time to help advocate for lyme. There are so many people suffering & I want to help. I want to find out as much as possible about this disease. I'd love to chat with someone from this forum. My e-mail address is alongcamepolly68@yahoo.com.
Warmest Regards,
Linda
Open Eye Pictures has posted new UNDER OUR SKIN film clips on these websites if you like to watch previews:
http://www.youtube.com/openeyepictures
http://snagfilms.com/films/title/under_our_skin/
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