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Has anyone seen this film about Lyme?
A friend sent me a youtube link to a trailer for a film titled "Under Our Skin". It's a documentary about Lyme that sounds interesting to say the least but I don't want to buy into hysterics or political drama if that is what this is. Has anyone here seen it? Any comments pro or con?
Here's a link in case you haven't heard or seen.
http://www.youtube.com/watch?v=sxWgS0XLVqw
Mary
Here's a link in case you haven't heard or seen.
http://www.youtube.com/watch?v=sxWgS0XLVqw
Mary
If you haven't seen UOS I highly recommend that you do! I met the director and a few of the "Lymies" at a screening here in Maryland. It was very well done and I can honestly say that I have been through exactly the same things as many of the people in the movie> get yourself a copy and watch it!
Barry
Barry
Lyme is a polarized topic in the medical community. The below is from a research center that sums things up better than I could.
From http://www.columbia-lyme.org/patients/controversies.html
(The Columbia University Lyme and Tick-Borne Research Center)
The Lyme Disease Controversy
The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.
Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.
Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.
In July 2009, the IDSA held a hearing to review recommendations and critiques of the 2006 Lyme Disease IDSA treatment guidelines by a range of speakers from the United States. The comments of those speakers can be found at the IDSA website.
From http://www.columbia-lyme.org/patients/controversies.html
(The Columbia University Lyme and Tick-Borne Research Center)
The Lyme Disease Controversy
The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.
Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.
Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.
In July 2009, the IDSA held a hearing to review recommendations and critiques of the 2006 Lyme Disease IDSA treatment guidelines by a range of speakers from the United States. The comments of those speakers can be found at the IDSA website.
I'm not aware of any special ugliness surrounding Lyme Disease. I find myself leery of most media claims these days. There is way to much drama in everything that is presented to us but it is nowhere more evident than in documentary film. We can be lured into believing almost anything if the (so called) facts are presented in a skillful way. Need I even mention the example of awards and accolades showered on the makers of films about the unproven theory of global warming (now renamed global climate change)? Those of you old enough might remember that somewhere around the 70's we were warned that we were entering a new ice age! On a less dramatic level, who believes that the day before Thanksgiving is the busiest travel day at airports? We're told this as fact almost every year but it's just not true. It doesn't even rank in the top 25.
None of that is to say that I don't believe that Lyme can be a very debilitating disease. Nor am I saying that obtaining a diagnosis and proper treatment is anything but a difficult process. This is just a disease that I need to learn more about and I want to consult the most reliable sources available. I believe I'm headed in the right direction. Thank you.
I'm off to see if your health pages contains a glossary to explain those unfamiliar alphabet soups. LLMD - ILADS - IDSA - UOS.
Mary
None of that is to say that I don't believe that Lyme can be a very debilitating disease. Nor am I saying that obtaining a diagnosis and proper treatment is anything but a difficult process. This is just a disease that I need to learn more about and I want to consult the most reliable sources available. I believe I'm headed in the right direction. Thank you.
I'm off to see if your health pages contains a glossary to explain those unfamiliar alphabet soups. LLMD - ILADS - IDSA - UOS.
Mary
Welcome to our little corner of MedHelp.
I agree with everything Wonko says above. It's interesting that you are leery of getting sucked into the Lyme controversy ... that is evidence of how ugly all this has gotten.
I saw the movie Under Our Skin (OUS) at a theater, and at the end of the showing, the filmmaker and several of those whose stories are told in the firm were there live and in person, on stage to answer questions and say a few words. The blonde woman who SO messed up and so much in pain in the movie? She was there commenting on her life now, and it me until the next day to realize that the healthy, bright woman who was talking on stage was the one who seemed so near death in the movie. It was remarkable.
I too had a hard time getting diagnosed, and while facing the uncertainty of Lyme is indeed upsetting, I would urge you to follow the trail to see if you too have it -- it is curable and at least manageable for many many of us.
You mention riding as providing exposure to Lyme ... actually, we are all at risk in the most common places. I got it the first time on vacation back East. I got it again in the middle of a very urban environment in California, sitting on a towel in a park frequented by dogs, and it turns out, also inhabited by a dog tick that had Lyme and a co-infection. I got my revenge, tho: by the time I found that tick in my leg, it was DEAD. (Small comfort, I assure you.)
Which leads me to say, be sure to get tested for co-infections carried by the tick: they all have different symptoms and different treatments, and sometimes it's not clear what you have because of the odd way the symptoms overlap or don't.
If you have not consulted an LLMD for a work up, I would suggest that you do just to be sure. Lyme is everywhere, not just back East, and the infections are hard to determine sometimes. If you would like any other information, please feel free to stop by here. You could also check the ILADS [dot] org website, which takes a very different view of Lyme and coinfections from the IDSA.
Best wishes --
I agree with everything Wonko says above. It's interesting that you are leery of getting sucked into the Lyme controversy ... that is evidence of how ugly all this has gotten.
I saw the movie Under Our Skin (OUS) at a theater, and at the end of the showing, the filmmaker and several of those whose stories are told in the firm were there live and in person, on stage to answer questions and say a few words. The blonde woman who SO messed up and so much in pain in the movie? She was there commenting on her life now, and it me until the next day to realize that the healthy, bright woman who was talking on stage was the one who seemed so near death in the movie. It was remarkable.
I too had a hard time getting diagnosed, and while facing the uncertainty of Lyme is indeed upsetting, I would urge you to follow the trail to see if you too have it -- it is curable and at least manageable for many many of us.
You mention riding as providing exposure to Lyme ... actually, we are all at risk in the most common places. I got it the first time on vacation back East. I got it again in the middle of a very urban environment in California, sitting on a towel in a park frequented by dogs, and it turns out, also inhabited by a dog tick that had Lyme and a co-infection. I got my revenge, tho: by the time I found that tick in my leg, it was DEAD. (Small comfort, I assure you.)
Which leads me to say, be sure to get tested for co-infections carried by the tick: they all have different symptoms and different treatments, and sometimes it's not clear what you have because of the odd way the symptoms overlap or don't.
If you have not consulted an LLMD for a work up, I would suggest that you do just to be sure. Lyme is everywhere, not just back East, and the infections are hard to determine sometimes. If you would like any other information, please feel free to stop by here. You could also check the ILADS [dot] org website, which takes a very different view of Lyme and coinfections from the IDSA.
Best wishes --
Thank you for the very complete and balanced response. I'm going to look into getting a copy or viewing this film.
I have an interest on several levels. The person who sent me the link is a horsewoman as are many of my friends. The nature of that activity puts riders at a higher risk of exposure so it is always a concern.
My own equine activities have come to an end since MS has left me with too many balance and pain issues to be able to participate anymore. When I recently developed symptomatic AV block it was suggested to me that I be sure I'm not dealing with Lyme instead of MS. I'm doing some research but it's difficult to even think of changing gears.
Finally, I am a nurse (X 38 years) discouraged by a profession that too often provides inadequate education to it's patients, a laissez faire attitude of some physicians, the (mis)education of physicians by biased manufacturing reps, and the implications of any person or entity withholding valuable information from the public and medical community.
I'll be taking a good look at your Health Pages here. Thank you for being such a gracious host to a visitor.
Mary
I have an interest on several levels. The person who sent me the link is a horsewoman as are many of my friends. The nature of that activity puts riders at a higher risk of exposure so it is always a concern.
My own equine activities have come to an end since MS has left me with too many balance and pain issues to be able to participate anymore. When I recently developed symptomatic AV block it was suggested to me that I be sure I'm not dealing with Lyme instead of MS. I'm doing some research but it's difficult to even think of changing gears.
Finally, I am a nurse (X 38 years) discouraged by a profession that too often provides inadequate education to it's patients, a laissez faire attitude of some physicians, the (mis)education of physicians by biased manufacturing reps, and the implications of any person or entity withholding valuable information from the public and medical community.
I'll be taking a good look at your Health Pages here. Thank you for being such a gracious host to a visitor.
Mary
Yes, I've seen it several times and own a copy.
Lyme is a politicized topic, so that can't be entirely escaped. But you do hear from both sides of the controversy in the film, often back-to-back.
I think the movie offers a lot of hope. The main character "Mandy" is followed over the course of several years, starting at the very beginning of her treatment. The movie watches her go from a medical mess to a healthy-looking, and still improving, young woman. 2 other characters are closely followed, and several other shorter segments on both doctors and patients are included.
In addition to the movie, for around $10 you can order the paperback "Cure Unknown" by P. Weintraub off of amazon. Or google the book to find it's site that has the fist chapter for free online. It is not a book about treatment, but gives an excellent portrayal of how Lyme came to be such a misunderstood and contested disease in the US. The author is a scientific journalist, and her family and self were affected by Lyme.
The director of UOS had a sister with Lyme, and he thought she complained a lot and didn't really understand her plight. Then years later, a good fried of his in CA came down with a mysterious ailment with a neurological component that in the end, was finally found to be Lyme disease. This inspired the director to make the film.
Lot of people with Lyme struggle to get proper testing, diagnosis, and treatment, self included. You are correct that there are hysterics and over-the-top activists surrounding this tick-borne disease. However, there are plenty of folks simply trapped in the middle who want to get better. I think the film and the book will help you see the situation through the eyes of different players involved, from skeptic doctors to sick patients.
Do you think you may have Lyme disease, or are you looking on behalf of another, or out of curiosity? What helped me a lot in getting my dx was talking to people about their experiences and what led them to (re)consider Lyme.
Take care.
Lyme is a politicized topic, so that can't be entirely escaped. But you do hear from both sides of the controversy in the film, often back-to-back.
I think the movie offers a lot of hope. The main character "Mandy" is followed over the course of several years, starting at the very beginning of her treatment. The movie watches her go from a medical mess to a healthy-looking, and still improving, young woman. 2 other characters are closely followed, and several other shorter segments on both doctors and patients are included.
In addition to the movie, for around $10 you can order the paperback "Cure Unknown" by P. Weintraub off of amazon. Or google the book to find it's site that has the fist chapter for free online. It is not a book about treatment, but gives an excellent portrayal of how Lyme came to be such a misunderstood and contested disease in the US. The author is a scientific journalist, and her family and self were affected by Lyme.
The director of UOS had a sister with Lyme, and he thought she complained a lot and didn't really understand her plight. Then years later, a good fried of his in CA came down with a mysterious ailment with a neurological component that in the end, was finally found to be Lyme disease. This inspired the director to make the film.
Lot of people with Lyme struggle to get proper testing, diagnosis, and treatment, self included. You are correct that there are hysterics and over-the-top activists surrounding this tick-borne disease. However, there are plenty of folks simply trapped in the middle who want to get better. I think the film and the book will help you see the situation through the eyes of different players involved, from skeptic doctors to sick patients.
Do you think you may have Lyme disease, or are you looking on behalf of another, or out of curiosity? What helped me a lot in getting my dx was talking to people about their experiences and what led them to (re)consider Lyme.
Take care.
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