1954289 tn?1332602519


its on hulu.com its free to watch and gives u an in depth look at Lyme disease and the controversy
18 Responses
Avatar universal
A caution to those not already familiar with the movie:  it is written to scare the wits out people who have no experience with Lyme, in order to gain attention to the problems Lyme creates and the current lack of awareness and understanding in too much of the medical community.

The movie focuses on several 20-somethings who have especially severe symptoms.  This was done to hype the movie and get attention, and altho the movie styles itself as a documentary, it makes little or no effort in my opinion to present a full, accurate and nuanced view of life with Lyme.

Lyme strikes those of every age group, not just 20-somethings.  Babies, old folks, and everybody in between.

The symptoms vary from person to person and also vary in the same person over time.  

The symptoms are also strongly affected by other infections (in addition to Lyme) that the same ticks carry -- these co-infections occur in perhaps half of all of those with Lyme and change and obscure the symptoms and thus complicate diagnosis.

Not everyone gets the intense symptoms of 'Mandy' (I think her name is) in the movie, of tensely cramped muscles and physical wasting (scrawniness).  Do NOT assume that if you have Lyme you will end up like Mandy.  To my knowledge, that extent of physical wasting is not common in Lyme.

Again, the movie was made to scare and alarm people into taking Lyme seriously, but do NOT assume that you will end up like any of those people.  

One of the physical/emotional effects of Lyme infection is anxiety and uncertainty, and this is not because you're nuts or weak.  It is an effect of the infection on your body chemistry and your brain.  This movie really annoys me, because if I had seen it when I was very ill with Lyme and a coinfection (which I was), I would have been further frightened and devastated, thinking that I would end up like Mandy.

***NOTE THAT most of us do NOT end up like Mandy, even for a while.***

And here's something I think the moviemaker cheated on:  I saw 'Under Our Skin' at a preview in an art theater nearby, and at the end of the screening, the director and a half dozen other people got up on stage in the small theater and took questions.  There was no organization to the questions and answers, no microphone, and no introductions, so it took a while to sort out what was going on.  It turned out that the healthy, happy group on the stage were the PEOPLE SHOWN IN THE MOVIE as suffering so awfully from Lyme ... and tho the introductions were poorly done, I am pretty sure one of them was Mandy.  She had gained about 30 lbs and looked and acted totally normal.

I personally think it was irresponsible of the director/producer not to put a section at the end of the movie telling what general treatment the ill people had gotten and updating their current conditions.

Again:  the movie was made to scare everyone into taking Lyme seriously, and fails to show a balanced view of how Lyme affects (and doesn't affect) others who deal with it every day.  The movie was sensationalistic, and in my personal opinion, it was irresponsible in that regard.

Bottom line:  Be not afraid, just get diagnosed and treated, and if the first doc you see doesn't take it seriously, find one who does.  I personally went through 20 docs before being diagnosed and treated, so it can take a while, but it's worth the effort.  Don't give up!
Avatar universal
Travis, thanks for letting us know that the movie is playing, I have been wanting to have some of my family members watch it.

Jackie, I totally agree with you about the movie" scaring the bejeebers" out of someone, because it did to me,, remember?? LOL, OMG, I was a wreck the first time I saw it, but after you explained that to me, I felt so much better about getting my diagnosis.

1954289 tn?1332602519
I am experiencing some sever symtoms like mandy but i am un diagnosed but im sure i got the diesease
1954289 tn?1332602519
my eyesight is deterorating
1954289 tn?1332602519
it didnt scare  me it gave me peace,i know i can be helped but i gotta get someone to listen to me
1954289 tn?1332602519
List of my symtoms
1.Eyes-blurryness,floaters for 4 months.went to a optomologist and he says my eyes are fine(my assumption its neorologcally associated)
2.Balance issues-been bed ridden for about 2 weeks.dizzyness when i stand,like a drunk felling.Tinnitus with no hearing loss.Been diagnosed with Vestibular neuritis 2 weeks ago by the ER.Not comfirmed by a ET.
My eyesight and tinnutus and occasional dizzyness started about 4 months ago
3.Tremors-one in my trunk that doesnt stop,feels like a accelrated heartbeat but my heartbeat is calm.Sometimes in my head and my jaw feels like its shaking,but only started when i got vestibular neuritis)
4.Sudden jerks especially when almost asleep,it happens more than once but only started when i  goit vestibular neuritis
5.Numbness and tingling-in my extremeties my feet have been numb for about 6 months on and off sometimes with sharp quick pains.
6.Extreme fatigue-started about 05 but i have been .diagnosed with Obstructive sleep apnea in 05.
7.Been taking Tums for years for what i thought was Gurd for severe acid reflex
8.I what i thought was a pinched nerve that when aggravated it starts between my shoulder blades and comes up through my shoulder and into my right elbow with numbness and pain
9.Cognitive-only in hand writing ,just isnt fleunt anymore
10.Heart palputation-heart beat will climb to 120 sometimes stgay there for a few minutes or hours,gradually comes back down-had every test on my heard including a heart monitor as well ultrasound,all normal
11.I have said to me and a few family members"i just dont feel right whats wrong with me"
12.Overall felling of blah.like you know how you used to feel but you just cant feel that way no more
Things i am diagnosed with
High cholesterol
Gerd-not diagnosed
Sleep Apnea-not diagnosed
Heart Palpitations-passed a stress test and heart monitor plus ultrasound but still have bad palpitations
Feet are dry and heals are cracked badly plus have a red patch on them on the front of the foot
I mean please 1 person at 39 years old can have all these abnormalitys that came over a 13 year period and i know i was bitten by a tick and the rash which i dont know anything about lyme disease
Avatar universal
Jackie, I agree that, like most documentaries, it is of course focusing on the extreme of the side it is pushing and showcasing.  I do, however, think that people with lyme should watch it and show it to their family/friends.  I think it helps display how serious lyme CAN be.  It is good that this movie came out to shed light on the controversy and bring up the topic and open it for discussion.  
1954289 tn?1332602519
I hope someone listens before its too late
1954289 tn?1332602519
i read a article that a doctor did a post mordem brain biopsy on 10 people over a 2 year period who died from alztimers or parkinsons ans selected them randomly and 6 of the 10 had the signs of lyme disease
1954289 tn?1332602519
this is a tsunami and its just gonna get worse,think of how many died  being mis diagnosed
Avatar universal
I don't disagree -- I just know how rattled I was when I was sick, and if I had seen the movie then, I would have been ready to jump off a very tall building to think I was going to be like Mandy.

If Lyme were "only" a physical ailment and did not affect the mind and emotions and sense of well-being, I would have much less issue with the movie ...

That's why I post something every time the movie gets mentioned, on the basis that others may well be as fragile as I was.  

If only the filmmaker had put a 3 minute addition after the credits, showing how the 'stars' of the film are doing now, I would be fine with it, but instead we're left with the parade of horribleness.

I'm glad it doesn't scare everyone, but others have told me they had the same reaction I did -- a scary movie with no comfort or guidance to peel viewers down off the ceiling.
Avatar universal
I hope you have found an MD who understands Lyme -- you've been through a lot already.  I don't think it's ever too late to get treatment --

Best wishes --
1954289 tn?1332602519
wow a 12 dollar bottle of antibiotics at the time of the bite would have made me avoid all this ,how doctors are so ignorant to this disease
Avatar universal
It's a long and ugly story how and why the docs are so dense on this topic.  If you are up for reading, there is a book called 'Cure Unknown' by Pamela Weintraub, who is a journalist specializing in science matters (now in paperback).  Her family got Lyme a few years ago, and her training and profession led her to write the book, which interweaves the arrogance of some scientists/docs, the complexity of Lyme, and the politics of it all in a gripping story, which would be interesting alone ... but on top of it all, it's tragic because of what so many of us are going through.

There are many MDs who will, as you wish you had been treated, give you a couple weeks of antibiotics and tell you you're good to go.  Unfortunately Lyme is far more complicated, in the same way that AIDS is complicated:  it presents a new paradigm that science is unfamiliar with, but for a lot of reasons, including the specialization of MDs into narrow fields, many docs are not looking at the big picture because they are trained instead to rely on other specialists, such as ... infectious disease docs.

The docs who first identified Lyme a few decades ago are still in power in the main voluntary group for docs who specialize in infectious disease (which Lyme is), that group being IDSA, for Infectious Disease Society of America.  These docs latched onto their early impressions of Lyme and established fixed criteria for diagnosis and treatment, but these standards have not been updated despite advances in understanding of Lyme as a very complex disease.

The book 'Cure Unknown' is rather heavy going when one has Lyme brain fog, but it does explain the whole situation.  There is a competing doc group, ILADS, short for Intl Lyme and Associated Disease Society, who take a broader view and more progressive understanding of Lyme and the other infections the Lyme ticks carry.  The IDSA docs sneer at the ILADS docs, and the patients are caught in the middle.

Often many of us don't know we have been infected, and it may take re-infections with different diseases from later tick bites (in addition to Lyme) to overwhelm the immune system and cause the symptoms to show up big time, as you are experiencing.  This is cutting edge medicine, but IDSA thinks it's all figured out.

Many of us never see at tick, don't know we've been bitten, and don't get the circular rash ... it's only later that the symptoms pile up and at that point, regular docs are unable to figure it all out, because on top of it all, the tests are lousy, but "modern" docs are taught that the test is always right, no matter how the patient, looks or acts.

Things will change eventually, but for now, it's a double whammy:  being sick, and having problems getting diagnosed and treated properly.  It is better here than in Canada, tho, where all docs work for the government, and the government uses the same lousy tests US docs use.  The difference is that in Canada, docs are required to treat according to government guidelines, so there are lots of sick people in Canada who can't get treated and end up coming down here.  Next time somebody talks about how great it will be when healthcare is run by the government, think about Canada.  He who pays the piper calls the tune.

On that happy note -- hope you find a doc and get diagnosed and treated soon.
Avatar universal
Travis points out that the documentary 'Under Our Skin' has a section at the end following up on the progress made by the Lyme patients shown in the movie -- I'm glad that's been added to the flick -- thanks for the data, Travis.
1954289 tn?1332602519
Mandy-after 2 years of treatment has gotten control of her body almost fully.No more neuro disorders and says she is in nursing school and progressing with her life
Dana-has recovered fully and got married and is going on with her life
The park ranger is also recovering well and sats"im glad to be here"and now goes about with his life.
1954289 tn?1332602519
Dana is still recovering but health is improving:)
1954289 tn?1332602519
The Park Ranger name is Jordan
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