posted
I don't think it matters why they were there, just that they were there! All the better if they went in unaware. If they were impressed or inspired and will write a review, then it will make waves! So far, I haven't seen any professional reviews. Hoping they will come today.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I went searching for any kind of review to get an insight of what the reaction may have been to someone that probably can't relate to Lyme the way those of us that have it can.
The only one I could find out there so far was from The New York Observer. This is what it says:
Under Our Skin, Village East Cinema, 5 p.m.
Gah! Disclaimer: This movie gave us the willies: Under Our Skin is about the overlooked and - according to director Andy Abrahams Wilson - practically epidemic Lyme disease and the controversies (!) over its diagnosis.
If you grew up in the tri-state area, you will be freaked out till the next horizon.
posted
I'm interested to hear about the discussion afterwards also!
Glad it went so well - wish I could have made the trip across the Atlantic for it!
Posts: 261 | From Herx-ville!! | Registered: Aug 2006
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posted
I'm going to the showing in May at the Times Center with my husband and parents Whenever I watch the trailer I bawl so I'm going to bring lots of tissues. I think my LLMD is in it - not sure if she made the final cut...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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I am so choked up reading this thread. There is alot of hurt cause people don't understand. I hope this is the beginning of that (understanding that is)
Posts: 262 | From nj | Registered: Dec 2007
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bettyg
Unregistered
posted
quote:Originally posted by onthemend:
They showed a group of photos of the 15 member committee that wrote the new IDSA guidelines - kind of like Wanted poster idea!!
The stories of the kids were just heartbreaking. It's ALL heartbreaking, but the kids were just the worst. otm
otm, i loved the most wanted poster comment!! see the photos of the people who have harmed us all with their carrying on!
thanks again for all the special reviews we are reading here.
cathy, i don't know what to think of the review from this person .... gave us the willies! folks like THRILLERS, perhaps that will draw them to our lyme stories!
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Clarissa
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posted
I don't really appreciate that review..."gave me the willies". It adds to the "freak-show" feelings most of us have experienced.
I hope there ends up being some reviews that are more sensitive, sympathetic and pro-active.
It certainly sounds like the documentary deserves a more compassionate review than that one.
posted
Wow... This really chokes me up too. I DO SO HOPE it is the beginning of the public at least understanding what it means to have Lyme disease.
They just have no clue!
And they need to begin protecting themselves more!! They are so cavalier about tick bites!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kelmo
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Member # 8797
posted
They really need to get off the "tick only" mantra. We are pretty sure it was mosquitoes that infected us.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Amy Tan was spoke eloquently. She discussed how she she was diagnosed with Major Depression and PTSD before Lyme. She thought she was crazy! And had seen so many doctors. She said she has epilepsy caused by Lyme and is still on antibiotics.
And that when she doesn't take her antibiotics her symptoms come back!
The film did not discuss much about the neuro psych symptoms in detail, the dirctor stated his focus was to get the word out about Lyme disease and the controversity about diagnosis and treatment.
He said he had a twin sister who had Lyme a few years ago and he thought she was just , I think the word was "kivetching" about being so fatigued. And now he understands.
Dr. H. spoke about various treatments including the Cowdan and antibiotics and heavy metals. He said Lyme is so complex because patients are not only dealing with with one speices of Lyme, but there are many.
Also he stated how the immune system is overwhelmed by Lyme, the co infections, viruses etc.
The only thing I wondered about the film is that the director did not talk about Columbia's Lyme research and might have mentioned Dr. Fallon in passing.
All in all it is an amazing film. Your heart could just break for Dr. Jones.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Thank you Grace!
Anyone else have anything to add?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I really wanted to THANK all who took the huge effort and expense to see the film and report back to all of us.
When my husband saw the trailer a year ago, he teared up. It made what was happening to our daughter very real. He saw the potential for absolute devistation if we had not started treatment when we did.
We saw the movie EXPELLED with Ben Stein. I am hoping that UNDER OUR SKIN will be seen by as many people. I highly doubt it will be given the time of day out where I live. But, I will buy a stack of DVD's and pass them out.
Posts: 2903 | From AZ | Registered: Feb 2006
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If your husband teared up just with the trailer.....he'll need a box of tissues for sure with the film.....
I'll say it again...I think it was just as emotional for my husband as it was for me....
Yes! Yes! they did give out bracelets........ I even asked for a few extra...because my husband and son work in hospitals...
any time we go into New York its expensive.....this time it didn't matter the cost....it was worth every penny...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I hope that no one thought I felt that was a good "review". I guess my point is that for those of us with lyme, this is going to be an extremely emotional film and I was searching for what the "average critic with no concept of lyme" might be saying.
I wasn't impressed, but remember, that's only ONE person and I'm hoping that there are going to be many more out there later that understand the film as it is meant.
I'm emotional just hearing some of the bits and pieces all of you have said and I can't wait until I can see it next month in NY. Wish I could have made this one two, but just wasn't in the cards to do both.
Thank you all for you giving us detail about the film and the panel discussion. As always, most of us can't get enough, so feel free to keep adding comments as you remember them.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
yeah, it was interesting, the filmmaker said he consciously and purposely left out the neuropsychiatric aspect of lyme entirely, because he's trying to get the point across to the general public that we're sick, not crazy. which at first made me uneasy, but after about two seconds' thought i totally understood his reasoning.
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Tuesday, April 29, 2008
Tribeca Film Festival Behind the Screens with Under Our Skin
Tribeca Film Festival Under Our Skin Behind the Screens sponsored by iShares
DGA Theatre New York, NY 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
The Behind the Screens Panel:
Dr. Richard Horowitz., specialist in treatment of Lyme disease
Aaron Dobbs, a programmer for Tribeca Film Festival, is responsible for finding the film ``Under Our Skin'' directed by Andy Abrams-Wilson.
The director introduced the film by saying that 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 suffers 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 illustrated 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, the sad state of the healthcare system in the United States were reinforced and we, the audience, were left feeling appalled and disturbed that we aren't more aggressive about this little spirokete costing people their lives.
The discussion afterwards was moderated by Robert Bezell. 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 blogoshere where they had clearly tapped into a real need. That's when Amada 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, 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 hisiories 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 Dr. 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 Dr. 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 pplemental sailments 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.
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 abrams-wilson, behind the screens, kris newby, lyme disease, mandy hughes, richard horowitz, robert bazel, Tribeca Film Festival
posted by AMPeters @ 12:58 AM
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outstanding review!!!! let's take the time to reply to this while the iron is hot! Bettyg
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bettyg
Unregistered
posted
here's what i just posted there......
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
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
What we need to do is burn a copy and mail it directly to Oprah. We need to burn copies and send them to all the news stations, to anyone who is in a position of extending this. Chances are people who know someone with Lyme or already have family with Lyme will suddenly see that others are suffering too. We should send them to the discovery channel, or companies similar.
Most Lyme patients are isolated, they aren't all sitting on Lymenet. Reaching out beyond with these other sources may connect more of us, and thus people in positions can make our plight known.
Not sure we'd have permission for all this, but that's the passion in me throwing caution to the wind. Anyone have a better idea? If we had to pay for copies, legally we could ask our associations that are funded by us collectively to do a project of that magnitude.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
up...don't want Under Our Skin to be dropped in a week.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
michael, i can feel your passion, and great idea.
how about copying the info in the link of good writeup by AMFISHER and post that on my DIRECT LINK to ALEX, 14, posted by MIKEJ, who're trying to get oprah to do a show on since she's dying of unknown illnesses but is positive for BARTONELLA!!!
do NOT show any link, they'll delete it promptly as they did my first 2 requests to do an alex show!!!
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
That's a great Find, Betty. Much MUCH better than what my searches came up with. Thanks for sharing. I can't wait to have the chance to view this film.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I am so happy for those of you who got to see it. I would give anything to go but I live in Florida and I'm too sick to go out let alone travel to NY.
It's so incredible to witness such an historical event. I may not have seen the film but through your posts I feel a part of it.
I was actually moved to tears. Thank you so much for describing it in such vivid detail for those of us who couldn't make it there.
posted
I was wondering if anyone is going to the showing tomorrow night (Friday)?
I am going again tomorrow night with my friend Kim who is in the chain of civilians that diagnosed each other to me. If it weren't for her I would still be undiagnosed.
Posts: 48 | From New Jersey | Registered: Aug 2007
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heiwalove
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