posted
A girl I used to work with at the health food store found out recently her little girl (3 yr old) probably has Lyme Disease.
This girl knew me when I was still unaware of my diagnoses and popping supplements nonstop trying to find something that would help. One time she even said "Geez! Stop taking all them pills!"
She lives in Wisconsin now and she didn't realize how prevalent it is there. (Only one of the most prevalent in the nation!)
She watched UNDER OUR SKIN and got a little freaked out over it, posted a thought on Facebook...and the replies she got were like "oh it'll be ok, she'll be fine" She even thinks she may have it also (brain fog-neuro symptoms)
Positive thoughts are great yes, good attitude even better. But one lady commented "Documentaries are made to exaggerate the truth to 'drive a point home'"
ANY OF YOU feel like Under Our Skin is an exaggeration of the truth?
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Absolutely, no way is UOS an exaggeration...and I can say that as the truth having lived the Lyme horror with my daughter for over ten years.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
That's what I'm sayin!!!! I haven't even watched it yet...watching tonight. But based on the trailer alone... I totally feel all those people's pain.
The entire reason I have waited so long to watch is because I get so worked up over the injustice being done and the nonchalant attitudes over LD and co. It's only gotten more deep seated since I've gotten deeper into treatments, and running across more and more ignorance.
posted
To the contrary,I thought it was understated. How can you relay the personal tragedies of Lyme disease? By watching a film you can sort of get it ,but having been through the hell this bugger presents ,I felt like there was even more you could do to drive home the point. I'm still hoping something else comes along that will serve as a springboard for awareness. Maybe a sequel? Would that be a documentary first? Maybe a national campaign with the help of celebs that have personal experience. Wait ,that might in itself lack credibility.Maybe a member of congress,doubts! Still hoping for a miracle.
Posts: 342 | From northern california | Registered: Dec 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I just want to slap somebody!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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sammy
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posted
It was very hard for me to watch. I think I cried through most of the movie.
UOS is not an exaggeration. The suffering and struggles are real. We're living it.
Posts: 5237 | From here | Registered: Nov 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
No UOS if anything is an UNDERSTATEMENT of the living he!! of this darn disease.
I've been unable to eat off & on for years because of Lyme. I am currently unable to eat because of Lyme. I have to be fed through the PICC line in my arm because I cannot put anything in my stomach without vomiting. I don't get seizures like the girl in the movie, but my gut is so messed up it is just as bad. Herxing for me can kill me if I'm not careful. I also don't have enough money for my medical bills and no end in sight for this snowballing problem, since I need the IV food to keep me alive (that's what is so expensive even with insurance). If I didn't have Lyme, I would probably be making a good salary by now, but currently I cannot work at all due to Lyme, and have not been able to work for a long time.
This disease drains people physically, emotionally, mentally and financially. It is like a black hole, sucking everything into it that a person needs to stay alive, and even then sometimes people die from it.
So no, I do not agree that the UOS movie exaggerates one iota.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Right, I think it's understated. You get the impression that there's an end to treatment, even with the worst cases.
I WISH 6-8 months of antibiotics had helped me. I didn't even see much improvement until after the 4th year of continuous treatment. I will be on treatment indefinitely (forever?).
It kind of stinks that most of the people featured seemed to be "cured" by the end if the film (not that I'm not thrilled for them!).
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Its been just about a year for me...i'm no better. And I'm able to at least function kind of like that chic doing the U2 tours.
Sure, Coffee and adrenaline push me through a lot...but it sets me back when i try to get back on track.
The documentary didn't make me mad...made me more sad than anything.
You can't hide monsters in the closet forever. Eventually....one day... perhaps this disease and it's co-infections will get the level of attention of HIV/AIDS and the amount of research that goes along with it.
and HEY.... WHAT IS WITH DR. M at the end FORGETTING ALL OF HIS RESEARCH from DEMENTIA????
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
FYRECRACKER, unfortunately, it's true about Dr. M. But it's not fishy in the sense that you are thinking. He developed Alzheimer's, or something similar, that is why he can't remember. He truly is ill and was in the hospital for a while. It's tragic.
If you remember seeing him in his basement, looking in his microscope at the spirio's---he had no protection!! No gloves, googles, protective suit, etc. I guess no one realized then what the risks were. And how telling: he's studying how Bb causes Alzheimer's and guess what he develops??
I'm heartbroken, as he was an incredible man in so many ways.
And UOS---it's great, but it is understated. Who would want to see the real full extent of what we go through---only us. And how long would that take?! I think Andy did a bang up job. He had to balance showing the extent of the illness with what people would be willing to watch, and what theaters or tv stations would be willing to show. There's only so much he could do the first time around, as it were. He did a lot. Really a lot. Sure, it still makes me cry.
Posts: 3792 | From around | Registered: Mar 2008
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posted
Well, i know a few film makers. I actually am a part of an independent film company in NY as the graphic artist. Now I wanna make a follow up documentary.
I know a few people who have watched it (not lyme-ridden) and they contact me with a very understanding and shocked outlook. One is a nurse in MD. I think if they are in the field of medicine and/or know someone stricken with lyme and co., it makes it easier for them to get fired up.
But yes, to reach the majority of people who don't know enough about Lyme, I think they did a good job too at keeping their interest. at least I hope.
posted
I am one who refused to believe that I will not be cured and at 100%, so don't talk "remission" to me, lol! Call me naive, ignorant, uneducated, or whatever you want, but I am expecting NOTHING LESS than a 100% cure from this disease!
That being said, lol, I believe the film was a fantastic portrayal of what is happening in the READ world of Lyme. Some feel it is lacking, but we all have to start somewhere, and this film gave me an excellent foundation, a great place to BEGIN, then I was able to branch off on my own and read more and do more research, because the film pointed me in the right directions. It gives the BASIC understanding of what is happening to the people and the best job explaining how power and politics and pure greed have gotten in the way of those same people healing.
It was a really great "jumping off point" for me, if you will, and I already told my friends and family that it is my greatest wish that they watch, because I have so much trouble explaining so much of it in a way that they can comprehend. I really believe the film will help beginners to Lyme, friends and family, and also help to bring awareness to the general public.
And yes, there was a lot of sadness, but many happy moments, too, like when the young girl, who was a former dancer, was able to walk down the hall...smiling...toward Dr. Jones. I can't imagine the feeling he must have when that happens, and this happens over and over with his success stories, and how good he must feel about what he does for all the children! I am sure that is what keeps him going and fighting and treating young patients at the age of 82 years! What an amazing man. I held it together for the entire film (the first time I watched) until that moment when she walked down the hall.
I watched this film alone, then one time each with each of my sons. I wanted to watch 1 on 1 with each of them, so I could really have them take it seriously and ask me questions if they wanted to without anyone else around. My middle son actually viewed it before me (and again with me, later), and he is the one who kept telling me to watch...before my diagnosis. So, I finally broke down and watched, and I was SO glad I did. At that point, I already suspected I had Lyme, but I was waiting for my test results, so the film really did open my eyes to much I did not know at the time.
I have nothing but good to say about this film, as it has really brought awareness about and saved countless lives already.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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posted
It is in no way an exageration of the truth.
I love the movie and have had family members watch it. My bosses have also watched it. I think it helped to drive home the severity of what I'm going through. The movie always makes me cry.
What can I say, many people just don't really get it unless they, well, get it (as in lyme).
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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it does a great job explaining why it is so hard to get a proper diagnosis and proper care for lyme, BUT...
i feel like it doesn't come close to explaining what lyme has done to me, and what my life is like on a daily basis.
it's a great film, but i definitely think it's an understatement when it comes to how serious lyme is!
Posts: 442 | From usa | Registered: Oct 2010
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posted
i also thought dana's story really understated how disabling lyme can be...
it made it seem like with lyme disease, if you just suck it up, you can go on a concert tour around the world...
there's NO WAY i could do that, no matter how badly i wanted to, or how hard i tried.
there are definitely different levels of lyme disease...
it really bothered me when she said she was just laying in bed sick, so she suddenly decided she should go out and do something!
when im in bed sick, the pain and fatigue is so bad, i literally cannot move. even when i desperately need to get up for meds, food, water, to use the bathroom...
i think most of us in this shape can't just snap out of this condition like dana seemed to do...
i know dana had lyme disease and was definitely sick... i just think that when the film was made, she had no idea how much sicker she could actually get, because she wasn't at that point yet.
9 years ago i was functioning at dana's level...
4 years ago i the only way i could get around the house was by crawling on all fours... and i was too weak to even brush my teeth.
i've had lyme disease all along... it just got much worse over time...
i think dana's story just made lyme disease seem less serious than it actually can get... and that it is just a matter of having the willpower to do what you want...
that really frustrates me, because people always tell me "you can do anything as long as you believe you can!"
it's like telling someone in a wheelchair they can walk as long if they want it bad enough.
everyone has their limits! we can all only push ourselves so far before certain things are just too much for us to handle!
Posts: 442 | From usa | Registered: Oct 2010
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Very good point, Katie.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I saw Dana's story a little differently. I could relate to her extreme fatigue, & her saying that some of us have "invisable symptoms" and are the like walking dead. We don't look like we are in so much pain and very ill.
I have caught myself sitting in a chair or standing against a wall noding off as she seemed to be about to do many times.
I think the point was made by her & her llmd that she had done a lot of damage & pushed almost to the point of ms symptoms. That is something that scares me to death.
I have times when my legs wont work & I can't get up. Then they get better, its like a reminder of just how much more this disease can take away.
The other thing I liked about uos is that they showed the lady from Fl on both good & bad days. I had to point this out to my husband-- like when she first walked into Dr. Jemsek's office. She didn't "look that bad" (as I hear so often-- gee, u look really good I guess your doing better).Then they showed her having a really bad episode.
I agree there should be another one made, giving more info about the coinfections & a the taboo subject of plum island & the dept of agg. the book lab 257 is a good read.
-------------------- "Real power is usually unspectacular, a simple setting aside of fear that allows the free flow of love. But it changes everything" -MBeck Posts: 11 | From Florida/Western Pa. | Registered: May 2011
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posted
If someone wanted to see the depth of struggle and relay this to people with no knowledge of lyme and co's,I have seen a couple you tube videos that really reminded me of my worst days.
I wanted to post them here ,but I think for some they may be too hard to watch.There are two in particular of herx reactions that are so sad. Whenever I see them I remember the despair I have gone through over the years.
Posts: 342 | From northern california | Registered: Dec 2010
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posted
The part on Dana to me was the most valuable. There are folk out there who see a tickbite, treat with a short course of abx and are fine. And there are those who are bed-bound.
Dana was most like me. I continue to live the life I had, a good life. But the sickness has degraded me to the point where it is hard to see the goodness. Even though I can suck it up when I need to.
Dana was living a dream life. But she is not able to love her life like she knows she should, and wants to.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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You're telling me that the doctor who was going the research on the brains of ALZHEIMER'S patients to test them for borrelia, got ALZHEIMER'S, developed dementia, and forgot his research?!
And that's NOT FISHY?!!!
Posts: 156 | From Virginia | Registered: May 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My ex-husbands wife of 23 yrs sent me an email last night after watching the film. Her and I communicate good jokes back and forth.
We have always liked and respected each other. She had some great questions in her email to me.
Do I have pain? Are there very good doctors in our city that are treating patients? She said she hoped I was getting long term abx. I told her they failed me and made my situation worse.
She was blown away by the truth. It scared the you know what out of her. She is scared to death of bugs period. She's a screamer. She would probably have a heart attack if she had a tick crawling on her.
I thanked her for watching it, she was on my email list of everyone I had informed that Under Our Skin was going to be on.
Of course Mother Nature upset the TV viewing last night. But I hope the majority of friends and family recorded it. I even forgot to turn over until after 11 pm. But I have DVD of it.
Sure enough there I was crying my heart out again for the last 30 minutes. Due to storms the picture was in and out.
It's on once more this month for recording at 3 am. I haven't checked July PBS schedule. Hopefully with lots of feedback they have it scheduled again for next month.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
I think I may have been one of the few who was disappointed by the film.
I agree it was understated and I didn't feel it had any kind of "fight" in it which is what we desperately need right now to grab the attention of the general population. It's a good start to get information out but the book "Cure Unknown" does a far better job of examining the harsh and twisted reality of Lyme. Of course it's a book verses a film and that's a different medium.
But we need another film with more cases that go into better detail. And it needs a better focus because it jumped around an awful lot. Take out the U2 stuff and use that screen time to focus in greater detail on the personal lives that are affected and the threat it poses to everyone else.
For me, of course, it's personal so I found I could relate, but the documentary needs to target an audience who is ignorant verses those of us who have Lyme because they are the people who need to be educated. And unfortunately it didn't touch those around me because it glossed over so much crucial information.
Fyrecracker, let me know if there is interest in another independent film. I'd love to help out.
-------------------- Just a catepillar, full of imaginal buds. Posts: 143 | From Philadelphia, PA | Registered: Mar 2011
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I most identified with Dana myself.In fact, even though I have positive Igenex western blot, I still wonder if I really have lyme.
I have never recommended UOS to my family to watch because I know that after seeing it they would say I must not have LD because I am not seriously ill like most people in the movie.
I am not very good at describing my symptoms to family and friends. Once I was told my my brother-in-law that everyone has aches and pains and you can't let that stop you from living.
My sister has told me to just go ahead and do things because I "always rise to the occasion."
I certainly don't wish to be sicker than I am, but do miss out on understanding.
I heard a while back that Dana has gotten well. Also the woman who was so sick and got married in the movie. Have they stayed well?
Posts: 1302 | From USA | Registered: Dec 2002
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Marz
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Member # 3446
posted
Oh, and Fyrecracker and Atta if you could get another film going that covers the co-infections that would be great.
Posts: 1302 | From USA | Registered: Dec 2002
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James1979
Unregistered
posted
Do you guys think it would be cool if Michael Moore did a Lyme documentary?
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posted
Personally, I think UOS is a great documentary and a great resource to show to friends and family. In our family, I identify most with Dana, but my daughter was more like Mandy - so I appreciated the distinctions.
That being said, I am troubled by the part where Dr. K says that EVERY case of MS, ALS, Alzheimer's, etc. he has seen has been Lyme disease. I think that statements like that undermine our credibility and I wish they had taken it out of the newly edited version.
(I am a big fan of Dr. K, generally, but I think facts like the current ILADS president's research showing about 15% of his ALS patients responded to abx treatment are more credible)
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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map1131
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Member # 2022
posted
I'm sorry but I would NOT want MM representing anything I believe. Others may feel differently and I respect that.
I can't turn this political or it will be deleted. I don't want another post deleted or edited.
Good behavior, Pam. Good behavior.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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James1979
Unregistered
posted
Pam - I was just asking for general opinions. I really don't have an opinion either way about MM, and I was just curious what other people would think of that.
I had a feeling that many would have been against the idea, but I was just curious.
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MichaelTampa
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Member # 24868
posted
MM ... hmmmm ... too controversial, would not be taken seriously by many, regardless of how good of a job he might do ...
Sorry to say that, but think that's the reality.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
This is my first post. I've been in treatment 2005-2007 and now again for the past 10 months. My 2 kids were patients also in the first round of treatment. At that time, the documentary filmmakers for UOS were just raising money. It has been a very long journey thus far. Babesia and Bartonella plus toxins have caused a lot of my continued symptoms. My doctor is 500 miles away. There are no support groups in my area. Someday I'd like to start one here. I'm interested in what thoughts you have about starting a support group and what it should offer? Anyone have a helpful support group they currently attend and wouldn't mind describing?
Posts: 1 | From NC | Registered: Jun 2011
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