just wondering if by any chance one or more of you lovely people will be at the 'Under Our Skin' screening at the tribeca film festival on sunday night? i'm so excited and i would love to meet other lymenet folks there!!
and i decided to attend the one on sunday, the 27th, because of the panel discussion following it, led by amy tan and dr. h!
please tell me i'll see some of you there..?
~heather Posted by mtree (Member # 14305) on :
Heather.....
I saw your responce to me in General.....
we had thought about going on Sunday...but its a bit to late for my husband...he has the normal life of going to work on Monday......
also....I gotta go when I feel ok....so I'm goin'. ...a friend of mine lives in the city so we may stay over......she is coming with us.....
let me know how you make out on Sunday... mtree
Posted by kam (Member # 3410) on :
Thank you Amy Tan and all those involved with getting this documentary this far.
Congratulations.
Thank you also for those who will be attending.
Looking forward to hearing how it goes.
Posted by Gace24 (Member # 2652) on :
Hi, I have not posted for a long time, but am here lurking every day! I am going on Sunday with my niece who also has Lyme. I am so excited.
I have neuro Lyme, am on maintainance Minocycline, will probably be on for life.
Will be coming from NJ, not sure if I am taking public transportation or driving.
Look forward to seeing other Lymies there. Grace
Posted by Robin123 (Member # 9197) on :
You lucky folks who will be able to attend the debut of this groundbreaking film! Congratulations to the film crew, everyone in it and presenters - we'll be thinking of you all this weekend!
Posted by heiwalove (Member # 6467) on :
that's awesome grace!
up Posted by bettyg (Member # 6147) on :
quote:Originally posted by Robin123:
You lucky folks who will be able to attend the debut of this groundbreaking film! Congratulations to the film crew, everyone in it and presenters - we'll be thinking of you all this weekend!
DITTO to everything robin said so well! we envy you all seeing the FINAL RESULTS of what we have been discussing for 2-3 years now! Posted by mtree (Member # 14305) on :
..
...........and thats why Betty we are going..... to support all of you that have been waiting for this for 2-3 years...... I know it means a lot to so many....
mtree
Posted by KS (Member # 12549) on :
I bought tickets to the UNDER OUR SKIN 'coming out party' (not sure what to call it now since it was picked up by Tribeca) on May 12th. Wish I could do both.....eitherway, I'm so excited to be part of it.
Those of you going to the film festival, please be sure to give the rest of us the details in terms of turnout, discussion panel, etc.
I'll do the same for the May 12th event (which is sold out I think so that's good).
Posted by BorreliaBrain (Member # 7603) on :
Hi all,
I haven't posted in a looong time, but I've been lurking here and there. I'll be at BOTH the Saturday premiere and the Sunday discussion (I know, I'm spoiled - I live in NYC). I'll be the short blond handing out flyers in case anyone wants to say hi! See you all there.
Posted by onthemend (Member # 13454) on :
Hey Heiwa, my husband and I did get Sunday tix - and for same reason - very interested to hear the discussion afterward.
It's a busy weekend for us and we also have tix for the May 12 benefit, so I'm not a00% sure we'll get there.
If we do, I'll be wearing a kind of massive dark blue bead necklace - kinda hard to miss!
I just can't wait to see what this film is like. I thought the trailer was totally compelling.
otm (Cheryl)
Posted by njgirl14 (Member # 14174) on :
Are tickets still available for sun night? I a thinking about going.
Posted by onthemend (Member # 13454) on :
Just go on the site mentioned in first post. We got ours two days ago. Not sure how large the theater is. The tix are general admission.
otm
Posted by Gace24 (Member # 2652) on :
Hi,
would like to met up with you Heilwalove, Onthemend, and BorreilaBrain, anyone else who is going and would like to say hello. Will look for the flyers, and large blue necklace.
I will have on light green stripped pants and green shirt, have short red brown hair. my niece has blond hair and we look alike.(other then the hair!!)
Grace
Posted by GenaD (Member # 11988) on :
My cousin and I will be at Theater 6 on Thursday, May 1 for a 2pm showing. I believe the theater is on 2nd Ave in between 11th and 12th if any of you want to join me!
Gena
Posted by heiwalove (Member # 6467) on :
i would like to meet up with you guys too. you can click on my myspace link to get an idea of what i look like, but basically, i'm short (5'3'' or so), skinny, have short curly red hair, and glasses. i'm not sure what i'm wearing tomorrow, but i always wear my lime green awareness bracelet around my left wrist.
can't wait to see you there!
Posted by davidx (Member # 8326) on :
I went to the 7PM show last night in the Village and all I can say is that this film is excellent. The theater seemed completely full and I think the show made a very good impression.
For those of you who are going to see it, you are in for a really amazing show.
-David
Posted by kam (Member # 3410) on :
Thanks for letting us know David. Looking forward to those who attended the showing with the panel reporting in too.
Posted by hshbmom (Member # 9478) on :
You all should wear a piece of green ribbon, badge, or some sort of idenifier...or some acorns painted green (LymeNet nut). How about a green necklace out of acorns?
Have fun, wish I could join you all!
Posted by radfaraf (Member # 11909) on :
I'll be there tonight.
Posted by magaro (Member # 12948) on :
My wife and I will be there as well tonight. It is so great to finally see a serious attempt at creating awareness around this.
Posted by Gace24 (Member # 2652) on :
hey, I will be wearing jeans with embroided flowers on left side, not green pants. grace
Posted by mtree (Member # 14305) on :
Hi All......
We went to see the film last night in the village..... The theater was full...... Not sure how to explain my feelings but I'll try.....first off......Wow....what a great job they did in making it......it went through everything I could think of and more....
It was a roller coaster of emotions........through out the film...... At times I had to hold back the tears.....as I'm sure a lot of people in the theater did.... I think it had even more of an impact on my husband and my close friend .......at least a different impact... If any of you do live close and are going, I really recommend you bring your spouses or anyone close to you......
The director Andy A. Wilson opened the film in thanking all who came........ ...and at the end of the film he spoke. again and. he seemed very humbled by the out come. As he was thanking all who were involved in the film .....we were surprised that some were there in the audience...Kris Newby......Mandy and her husband...(the main girl in the film)..a few other Lyme victims that were in it and a few doctors...including Dr. Richard Howorwitz...(he will be in the discussion to night)......my husband had to go shake his hand for all the time and dedication he has done for our Lyme community.....
All I can say is that if you do live close by......go see it.....really....go see it......it really was something to see on the big screen......
For all who have been waiting for several years for this to finally make it......it was worth the wait...... I have had Lyme for over 20 years...I'm sure many of you have even had it longer ..... to sit there in that theatre was so overwhelmingly comforting...and that we have survived this hideous disease with such strength and dignity..........
At the end of the film there was a standing ovation....filled with an abundance of clapping.....as I stood to stand......I not only felt that I was standing for the success of the film....but for all who have survived...all who did not survive and all who are trying to survive this life with Lyme......
..it was to me a standing ovation to all of us......I felt that....I felt all of you with me....and I'm so grateful that I have LymeNet and all of you........... We are truly warriors and we fight everyday for our lives with this disease that is ``under our skin''.
mtree
Posted by KS (Member # 12549) on :
mtree,
Thank you for sharing your experience....you almost made me cry as I can totally relate!!
Kristin
Posted by kam (Member # 3410) on :
Tissue please
Posted by Keebler (Member # 12673) on :
-
Does anyone know when I can buy a DVD of it?
Even if it comes to my city, I am unable to go out. I would like to get the DVD and share with doctors and family. My guess is it has to make it's appearance first in theaters, though.
So glad this is finally out. I hope it does well.
In addition to every doctor and nurse, every teacher, every politician should see it, too.
-
Posted by onthemend (Member # 13454) on :
I'm sure DVD will be forthcoming, but in the meantime, why don't you send an inquiry to Turn the Corner Foundation? They might be able to direct you or let you know when a DVD will be available.
There may be some time delay, but I am sure the ultimate intent is for the film to be generally available as an awareness/teaching tool. I also wouldn't be surprised to see it show up on HBO/PBS/IFC or Sundance, or something similar.
So often I have felt a complete inability to express what I've felt and what this whole experience has been like for me. I am really hoping that this film will do a lot of it for me. I cannot wait.
otm
Posted by mtree (Member # 14305) on :
they said that they are hoping to get the DVD's asap.......I was hoping that they were going to be avaliable last night. I think others did too. they would have made a killing...
you can also go on the website..... www.underourskin.com for information.... Posted by kam (Member # 3410) on :
I put in a request at the above web site for Netflix to carry it.
Posted by njgirl14 (Member # 14174) on :
mtree
Thanks for sharing that. Very emotional for me just reading your account. I really wish I could have gone tonight. I am not to far away but going out is difficult, but hearing your review makes me want to go no matter how difficult to do so.
Thanks for sharing. If anyone hears about the DVD I'd like to know.
Does anyone know if/how a local theatre would get this movie?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by njgirl14: mtree
Thanks for sharing that. Very emotional for me just reading your account. I really wish I could have gone tonight.
Very emotional for me too!! Thanks for what you said, mtree. We all need this film!!
I can't wait to see it!!
Posted by tdtid (Member # 10276) on :
I have to assume that the DVD is going to be available atleast at the time when they are having the showing next month since the V.I.P. seats for $100 are suppose to include the DVD in a goodie bag.
Perhaps it will be available before then, but since it's being promoted that way, I would think it will be no later than that time.
Cathy
Posted by mtree (Member # 14305) on :
Heather......
let me know what you thought tonight and how the discussion went........
mtree
Posted by magaro (Member # 12948) on :
I went tonight with my wife. It was absolutely excellent. Having had lyme for years without a diagnosis and feeling like the walking wounded it was great to see and hear other accounts of people like us. I found it very emotional at times and there was some light humor. Though it seemed that the humor is very subtle for those of us with lyme that can get it. Overall I think this film will help get the message out about what lyme really is. Hopefully we will eventually get the proper recognition for our illness instead of being treated like it is no big deal. I am so tired of having to hide my ongoing symptoms as i continue treatment.
Anyone that can go please do, you won't regret it and it will be very important in getting the film the additional exposure it needs if the theaters are all full.
I am so thankful to the director, producer, and everyone involved...
Posted by onthemend (Member # 13454) on :
It was great. I went with my husband. It was very helpful to him. It's always been a struggle - I don't want my identity to become that of an invalid and/or complainer to him, yet I really want him to understand what I am going through. This movie accomplished that in 100 minutes better than I have been able to over the last three years.
Bigger Picture, I think it will have a huge impact on the whole TBD situation. The woman next to me was attending strictly as a film buff. I heard her gasping and tskking during the film, utterly shocked and horrified at the state of the Lyme world. I think her reaction will be typical. I hope it's the start of a new day.
Best to all of us -
otm
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by magaro: Anyone that can go please do, you won't regret it and it will be very important in getting the film the additional exposure it needs if the theaters are all full.
YES!!! Thanks for going for all of us!!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by onthemend: Bigger Picture, I think it will have a huge impact on the whole TBD situation. The woman next to me was attending strictly as a film buff. I heard her gasping and tskking during the film, utterly shocked and horrified at the state of the Lyme world. I think her reaction will be typical. I hope it's the start of a new day.
Me too!
Posted by heiwalove (Member # 6467) on :
it was amazing. i nearly started bawling.. then cried the whole way home on the subway.
i didn't want to leave that theatre. what a beautiful relief to be surrounded by strangers who in many ways are more like family than my own blood.
i can't wait until this film gets out there. i'm ecstatic it's showing at the tribeca festival (that's a Really Big Deal in the film world, i think); it's just a matter of time until the masses see this documentary.
much love to all of you. i am so proud to be part of such an incredible, inspiring group of survivors.
<3
Posted by Anneke (Member # 7939) on :
Wow, so happy to hear it was so good. I remember watching the 30min showing, and it was very emotional for me as well.
So, did it get much into the politics and controversy? Any discussion on the IDSA?
Anneke
Posted by Anneke (Member # 7939) on :
Wow, so happy to hear it was so good. I remember watching the 30min showing, and it was very emotional for me as well.
So, did it get much into the politics and controversy? Any discussion on the IDSA?
Anneke
Posted by heiwalove (Member # 6467) on :
LOTS about the politics and controversy, lots on the IDSA. the film even has several short clips of the worst-of-the-worst (wormser and shapiro). but worry not, they look and sound like the idiots they are. Posted by bettyg (Member # 6147) on :
. i've been enjoying ALL your reviews of this much-awaited film!! kudos to all for replying and GOING for those of us out of state, etc.
heiwalove ..... you made my day on your last post of idsa!! you rock girl!! Posted by daise (Member # 13622) on :
What a relief!
Thank you for the report. And it showed the politics. Showed IDSA for what it is. Just in time for Congress!
Sleep well, everybody.
daise Posted by roro (Member # 13383) on :
quote:Originally posted by onthemend: The woman next to me was attending strictly as a film buff. I heard her gasping and tskking during the film, utterly shocked and horrified at the state of the Lyme world. I think her reaction will be typical.
I am sure this will be the reaction of many. no one really understands what we go through, not even those closest to us. hopefully this film will bring it home emotionally.
Posted by METALLlC BLUE (Member # 6628) on :
Ripped DVD copy? Give me!
Posted by radfaraf (Member # 11909) on :
I was there till about 9:30PM I had to leave so I wouldn't miss my bus back to Jersey. Felt bad leaving during such a good discussion.
Posted by onthemend (Member # 13454) on :
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. And when Jordan Fisher Smith said if not for his children he might not have carried on. My husband was just staring at me. I'm nodding.
otm
Posted by lymeout (Member # 8045) on :
Those of you who attended last night - were there representatives from any media there? Journalists?
Posted by onthemend (Member # 13454) on :
Definitely press in attendance. But a lot of it seemed to relate more to covering the festival & movie recs & ratings - it is an 'industry' event.
A woman on the other side of my husband was taking a lot of notes and I saw that she had headed her piece 'Good Morning America'. I guess I should have spoken to her to get the scoop but I was feeling nervous about the movie and also wasn't functioning that great.
As we waited outside in line, a group of 'press' showed up. Again, I had the impression they were film industry press more than people there to hear specifically about the Lyme situation/controversy. But I am sure there was general press there too.
otm
Posted by blackmon (Member # 1528) on :
Thanks everyone who was able to go for sharing your experiences...very gratifying to hear.
I hope that someone is making DVD copies available to Congressman Frank Pallone and others in Congress.
Nancy
Posted by lymeout (Member # 8045) on :
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.
Posted by tdtid (Member # 10276) on :
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.
What kinds of things were discussed after the film with Dr. H and Amy Tan?
I wish I could have gone!
Posted by ElaineC (Member # 9857) on :
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!
Posted by Larkspur (Member # 5131) on :
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...
Posted by njgirl14 (Member # 14174) on :
Me too - I think I would be bawling.
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)
Posted by bettyg (Member # 6147) on :
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! Posted by Clarissa (Member # 4715) on :
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 by Lymetoo (Member # 743) on :
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! Posted by kelmo (Member # 8797) on :
They really need to get off the "tick only" mantra. We are pretty sure it was mosquitoes that infected us.
Posted by Gace24 (Member # 2652) on :
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.
Grace
Posted by sixgoofykids (Member # 11141) on :
Thank you Grace!
Anyone else have anything to add? Posted by kelmo (Member # 8797) on :
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.
Posted by Gace24 (Member # 2652) on :
And they gave out green bracelets that said under our skin and uncover the epidemic!
Grace
Posted by sixgoofykids (Member # 11141) on :
We saw Expelled, too. It would be great if Under Our Skin also made it to local theaters.
Posted by mtree (Member # 14305) on :
Kelmo.....
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
Posted by tdtid (Member # 10276) on :
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
Posted by heiwalove (Member # 6467) on :
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.
Posted by cs (Member # 15270) on :
Do you think that link should be sent to Oprah on our quest to get Mike's niece's Alex's story on her show?
Just a thought...
Posted by bettyg (Member # 6147) on :
copying above link here so i can read it!!
The Film Panel Notetaker -
Miss a panel discussion? Don't worry! We took notes for you.
The Film Panel Notetaker is a fun and informative educational resource for everyone from film professionals to cinephiles where notes are shared from film panel discussions, filmmaker Q&As, screenings, film festivals, conferences, seminars, parties, and more.
If you have ever been a panelist, a moderator, or in the audience, we strongly encourage you to share your own notes as a Guest Notetaker, and we will post them here for you.
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 Posted by bettyg (Member # 6147) on :
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
Betty G, Iowa lyme activist
Posted by METALLlC BLUE (Member # 6628) on :
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.
Posted by kam (Member # 3410) on :
up...don't want Under Our Skin to be dropped in a week.
Posted by bettyg (Member # 6147) on :
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!!!
thanks michael! Posted by tdtid (Member # 10276) on :
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
Posted by ForestNymph (Member # 15109) on :
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 by bettyg (Member # 6147) on :
here's a good COURTANT, CONN. NEWSPAPER WRITE-UP about this; NON-BIASED for a change; thanks to anneke for posting this in medical!!!
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.
Posted by heiwalove (Member # 6467) on :
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