Under Our Skin, directed by Andy Abrahams Wilson–and shortlisted for the Academy Award for Best Documentary–is a disturbing and encompassing look at Lyme disease, and our current health care system, which is ill-equipted to deal with the disease. Caused by a bacteria similar to syphilis and carried by ticks, Lyme disease cases are increasing annually and spreading across the globe with, according the filmmakers, possibly hundreds of thousands infected each year. Patients often develop chronic symptoms ranging from exhaustion and pain to severe neurological disorders and dementia; the majority are misdiagnosed and mistreated. They are told their symptoms are in their heads or that they have other illnesses ranging from fibromyalgia to MS and ALS.
At the center of this human catastrophe are science and medical politics. In 2006, as Wilson was making Under Our Skin, the Infectious Disease Society of America published guidelines for the treatment of Lyme disease that refused to acknowledge chronic and long term Lyme disease. The filmmakers discovered eleven out of fourteen IDSA authors on the Lyme disease guidelines committee (or their employers) make money from the guidelines as currently written. Their guidelines claim that Lyme disease can be treated with a two-to-four week course of antibiotics, and that post-Lyme syndrome is an auto-immune or psychosomatic disorder.
The patients, many of whom were treated by Lyme-literate doctors whose practices are affected by the IDSA guidelines, tell a different story: pain and neurological disorders, miscarriages and fetal transmission of Lyme–their lives destroyed until they begin the aggressive and controversial treatments, which insurance companies, backed by the IDSA guidelines, refuse to cover. Lyme-literate doctors often are sanctioned; many close their practices to avoid the fate of Dr. Joseph Jemsek who successfully treated thousands of Lyme disease patients before his license was suspended by the North Carolina Medical Board. The sanctioning allowed Blue Cross/Blue Shield to sue for one hundred million dollars to recoup insurance payments for long term Lyme treatments.
Under Our Skin shines light on the science of Lyme, contributing environmental factors, health care policies, and the very real faces of those affected by the disease: 12-year old Marlena, a ballerina who loses control over her limbs; Mandy a marine animal trainer at Sea World who spends seven years suffering from Lyme until Dr. Jemsek puts her on a 2 year course of antibiotics; Major League baseball player Ben Petrick who is misdiagnosed with ALS (Lou Gerhig’s disease); Elise Brady-Moe who suffers a series of Lyme-involved miscarriages; Jared Shea who is born with Lyme disease contracted in utero.



120 Comments












Support this site!
Subscribe to the newsletter
Advertise on Firedoglake
Send
us your tips
Make us your homepage
About Firedoglake
Tonight we’re discussing the scourge of Lyme disease, the stunning information and patient stories presented in Under Our Skin with director Andy Abrahams Wilson. Please stay on topic, and kindly refresh your screen every minute or so to see new comments, questions and answers. And as always I apologize in advance for my enthusiastic typos.
andy, how did you get interested in Lyme disease, and how did you find the subjects of your documentary?
and congrats on the short listing..the movie is awesome and I hope it makes the nominations and that we see you onstage accepting!
Hi there! I’ll apologize in advance for my typos too. I’m not a very good typist.
My interest in this issue started when a friend of mine here in San Francisco got very sick. She was diagnosed with MS, then ALS (a death sentence) and then finally Lyme disease. I was shocked that Lyme disease was so serious and that it was not isolated to the Northeast US. The deeper I went into the subject I went the more suffering I found and the more medical evil I uncovered.
Andy, Welcome to the Lake and congratulations on the shortlist for the Oscar. It is a great film.
Think of all the thousands of people who have just stopped at an MS or ALS diagnosis when they may have had Lyme and could have been treated for Lyme? How many lives could be saved!?
Thanks for the congrats. It is very rewarding to be able to give voice to so many people suffering in silence and to an issue so long ignored.
Hi Lisa, Bev.
Welcome Andy.
Sure hope you get an Oscar nod. How is it you know you’re on the “shortlist”?
How do actually identify a disease carrying tick?
Is this the same tick/disease that dogs get?
Wow! A reason to watch the Oscars this year. Did he industry for year. Thanks, Lisa.
Now….Lyme Disease.
Lotsa stuff be vewy afwaid of. More on the plate.
I need a bigger plate.
Indisputable evidence: It’s on their website.
http://www.oscars.org/press/pressreleases/2009/20091118a.html
Can this be nipped in the bud if you do something when you see the red ring appearing on the skin? Or is it already too late to treat successfully at that stage?
How can a person who suspects they have Lyme get tested? Pressuring their doctor? A Johns Hopkins study found 75% of cases were missed by using the two-tiered system (ELISA followed by Western Blot). If these both come back negative then does testing for what it’s not (MS, ALS etc) then begin? What other tests can be used? Or do patients just keep going back?
Deer ticks are the primary carrier of Lyme disease, but the bacteria have been isolated in other insects, have been shown to be transmitted congenitally (mother to child) and possibly sexually.
sweet!!
The spirochete of Lyme and the comparison to the spirochete of syphilis to me was profound. The CDC, et al, aren’t interested in considering the implications of that? The horrors of long term syphilis aren’t exactly unknown to medicine.
What are the tests for Lyme’s… are they reliable? Can the disease take hold without symptoms presenting?
The trick is to diagnose quickly (the bull’s eye rash doesn’t always appear), but most docs don’t know the telltale signs and conventional tests are not accurate.
the deer tick is not the dog tick. deer ticks are tiny, they look like shiny black sesame seeds
Please note that I am not a physician. General questions or questions about the film itself are best.
I enter this discussion as a resident of a rural (mid-Hudson) area rife wiht Lyme disease. I have never had it, despite the fact that about 4/7 days I work outdoors, taking no precautions. What is the science about who does and who does not get infected by Lyme?
Is the antibody to to Lyme’s disease diagnostic?
oh, then nevermind.
“Disease” means you have symptoms, but it is possible to be exposed without having symptoms presenting. In this case it is not thought necessary to treat.
How did you find the subjects that you profiled? You seemed to find them while they were suffering and then were able to follow many of them to some space of hope or even recovery.
There are many antibodies that may or may not be associated with Lyme, some more specific than others. That’s why the testing is as much of an art than a science. As I said before, studies have shown that the conventional tests miss about half of positive cases. This is bad news!
So many ticks and insects can carry this vector? Is that correct?
And also many ticks don’t carry it either?
What are the consequences of having asymptomatic Lyme?
I noticed Alec Baldwin is co-hosting the Oscars! That would be interesting if UOS won with him hosting:)
Hi Andy,
I do not have a question for you, but I wanted to thank you personally for making this film. It is an amazing film that I hope will shed more light on this horrific disease! I can’t believe that we are still dealing with the same issues (diagnosis, treatment, etc.) that people were dealing with 30 years ago. Thanks again!
We received hundreds of stories from Lyme sufferers and looked for people who were good “characters”" who had compelling stories, dramatic arcs, were accessible and representative. It was very difficult to cut so many people out of the film because there were SO many incredible stories–all of them worthy of being told. Unfortuantely, many were too depressing to show.
Are there any doctors who specialize in this disease or medical centers who specialize in diagnosis and treatment?
Since it seems to be epidemic in the NE and everyone is warned about it but there seems to be such a disorganized effort to eradicate, identify and treat it. Why is that?
The only “proven” vector is the deer tick, but the bacteria have been isolated in other insects. Yes many ticks (including deer ticks) don’t carry the bacteria. But many ticks carry other dangerous co-infections which make the situation much more complicated and aggravating.
I recall when Michael J Fox was first displaying symptoms of Parkinsons, and he passed it off as Lyme’s..but now from watching UOS one wonders…same with a friend who was suddenly diagnosed with MS…
Please see our website at http://www.underourskin for resources about where to go to find doctors and specific medical information about the disease.
I was struck by the utter hostility displayed by medical boards towards drs treating chrnic Lyme disease.
It stuns me that a doctor can have complaints filed against him by an insurance company, especially if his patients are getting well. Seem like the fox watching the hen house! What’s the latest on Dr Jones?
Yes Michael J. Fox did admit that he had tested positive for Lyme, but it seems like he’s been swept up in the “Parkinson’s Industrial Complex. One wonders what would have happened had he been treated for Lyme a long time ago?
My friend who was diagnosed with MS and ALS is now functioning more or less normally. That would not have happened had she not gotten Lyme diagnosis and treatment.
Dr. Jones is still being dragged through the courts. He does not want to abandon the thousands of children he treats and who are dependent on him. It would be tempting. He’s 81 and I imagine very tired of the fight. But he won’t give up!
ELISA and Western Blot arent reliable..what can be done for testing?
I hve been wondering about Michel J. Fox too and wishing he would focus on the fact that he too had Lyme before all the Parkinson’s symptoms. It doesnot negate that he has what he has how-however it could really help Lyme get recognized as important to catch early!
I spent my career in The Industry, and, unlike US politics, I don’t think it works that way. Well, there is polictics, as with every other group of humans.
By chance, do you know if Montel Williams has ever been checked for lyme? I often wonder that with his MS diagnosis.
There are specialty labs that are more reliable, but you need to know about them. Most patients (and doctors) don’t know. This information can also be found on our website.
that was the shocking part of the movie to me, even linking it to Alzheimer’s — and ALS, MS and Parkinson’s.
What a tragedy that Dr. Alan McDonald (working out of his basement) ended up with dementia. Is there any more information on him, his condition, and whether or not it was related to his research?
Our little town (and many others throughout Arkansas) are filled with deer. it’s a constant topic in city councils.. whether or not to allow hunting (thinning herds) inside city limits… whether or not folks can build certain kinds of fencing around their gardens.. or whether or not folks can feed them corn.
I never hear them discuss the threat of Lyme disease and have often wondered why.
Hey pups, just the regular reminder: when replying to a comment/question, you may want to hit the reply button under the post.
Wonder, or Google.
Jest sayin’.
Andy please read the relative new species that includes Fleas as a carrier of Lyme. Borrelia afzelli resides in the digestive tract of the tick or flea. The tick or flea usually inherits the bacteria from an infected, white-footed mouse is considered a new species of the Genus Borrelia and considered homologous to Borrelia burgdorferi with regard to phenotypic, genetic, and immunological characteristics. Diseases linked to this species of Borrelia are Lyme disease and Acrodermatitis chronica atrophicans (ACA). Better understanding of the structure and function of this pathogen will create better methods of treatment to people with the diseases it causes.
I think one of the problems with Western medicine is the one pathogen, one disease, one cure paradigm. Lyme is showing us the limits of this. Unfortunately we have infrastructures built around all these different diseases AND syndromes which make it difficult to get cross-fertilization and share resources and information.
So, I repeat my query. I have exposed myself in every possible way to Lyme’s, and have not gotten it. Tested several times, negative. What is the individual experience wrt susceptibility, or not?
How exciting and unexpected! Hi Andy and thank you for your amazing film. I have lyme and I treat lyme. Your film is already a huge boon to both lyme patients and to lyme practitioners.
Is there anything that we can do to increase the chances of your film getting on the Oscar short(er) list of five?
Thanks again for all you have done.
I, too, have wondered if the increased deer populations are part of the epidemic. I know many of us are reluctant to cull local deer herds, but we eliminated their natural predators so we humans have to step up…
what did you find when you googled?
WTF are you saying?
I LOVED THE SCIENCE PART! Dr McDonald’s hypothesis and discoveries were inspiration and science in glorious combination. For those of you havent seen the movie, Dr Alan McDonald recognized the genetic similarities between syphilis and the bacteria that causes Lyme disease. he hypothesized that perhaps the dementia found in Alzheimer could be linked to B. burgdorferi the Lyme disease bacteria. Seven out ten samples of Alzhemer brains tested positive for B. burgdorferi–pretty amazing!
The link between Lyme and neuro-degenerative illnesses was one of the things that fascinated me the most. Alan MacDonald’s work truly is pioneering and makes sound scientific sense, but he’s bucking the system and now he’s been sidelined because of his OWN neuro-degenrative illness. One wonders: he has been working with borrelia his entire professional life and his wife also has Lyme disease. Is there a connection? We need to connect the dots!
Lyme is really a clinical diagnosis — therefore you want a practitioner very familiar with the illness.
Dr.Jemsek (I believe) calls syphylis the “dumb cousin” to lyme (and he’s an infectious disease doc)
I’m sorry I can’t answer this. Not everyone responds the same way to exposure to pathogens.
That’s not a nice way to ask a question.
If I understood correctly Dana’s doctor in seattle mentioned that lyme can overwhelm the immune system and cause other things we could normally throw off to manifest, creating the post-Lyme syndrome of neurological disorder…or did I mis understand him?
This:
http://www.medicinenet.com/lyme_disease/article.htm
this:
http://www.mayoclinic.com/health/lyme-disease/DS00116/DSECTION=symptoms
and
this:
http://en.wikipedia.org/wiki/Lyme_disease
Is the medical community at large starting to listen to the genetic similarities between lyme and other diseases? Fascinating and frightening.. !!
Andy, can you tell us any more about Alan MacDonald. Did I read that he is no longer working and had to sell his home? Is he not functional? How terribly sad — what a wonderful man.
!!
The White Footed Mouse is also a carrier of Lyme. East of the Rockies and across Canada it is moving at the rate of 15-20 miles per year.
We need to get pres, press, press. And if some of the celbrities with Lyme would come out of the closet, that would help tremendously.
thanks demi
I wonder about Dr. McDonald’s condition. I hope you get a chance to see the documentary if you haven’t all ready.
Huh?
for me, that was the most stunning moment in the movie.
Lyme is immunosuppressive and “allows” other dormant infections to manifest. Dr. Jemsek (in the film) treated HIV for 20 years before his practice became focused on lyme. He sees many similarites in the two disease — both politically and medically.
Yes, however Lyme literate physicians would not use the term “Post Lyme Syndrome.” This is a term used by physicians who stand by the outdated belief that Lyme disease cannot be chronic after a short term of Abx.
I was hoping I wouldn’t have to post the “please be respectful of our guest” caveat because we’re all adults here, but since it obviously needs to be said..KINDLY BE POLITE TO OUR GUEST and fram your questions in a civil manner. thanks
Elliott, not sure what you were referring to. In the movie Alan MacDonald was well.
Dr. MacDonald is no longer researching or working. But others are continuing hos work with biofilms.
Tell us about the Connecticut anti-trust law suit filed against the IDSA (infectious disease society of america)
Andy, We (FDL) always do live Oscar blog threads on the big night. You simply must stop by so we can all wish you good luck or congratulate you…) Wear your dancing shoes. *s*
After the film the IDSA made a deal with the CT Attorney general that they would reconvene a new Lyme guidelines panel. None of the previous panelists could be on the panel because of their conflicts of interest. But the new panel has no clinical Lyme physicians, so one wonders if they will not just be beholden to the status quo. However, the IDSA did request copies of our DVD to give to every member of the new panel. The recommendations of this panel won’t be out for some time.
wow.
Obviously the mainstream medical community has a bit of a problem with those doctors who are taking Lyme disease seriously. Now, I can appreciate the concern about charlatans but Under Our Skin makes a compelling case to take it very seriously. Again I bring up the spirochete form of the Lyme disease bacteria and syphilis.
The case of Dr. Jones is heartbreaking, he seemed devoted to his patients.
Andy, my sis is in the industry… she thinks the lymie celebs will not “come out” because of their insurance issues…Do you have any reason to hope any of them will come forward?
Rooting for UOS in the Oscars,, and passing it amongst my friends. Great film-making.
at the end it was revealed he suffered from a dementia and could no longer pursue his work.
What’s the latest on Dr Jones?
I think you’ve hit the nail on the head concerning celebrities. I do think that the awareness that the film brings will help create a climate in which Lyme disease loses some of its stigma and danger of disclosure.
My experience is if someone is an advocate, they will show up and support that which they support.
The Industry folks have balls. Remember when Tim Robbins and Susan Sarrandon showed up in matching prias?
Re: Dr Jemsek: is South Carolina’s medical board more open minded than North Carolina’s? How is his new practice?
See comment #37.
People who have classic Lyme–bit by tick, treated for 2-4weeks, how many of those go on to display chronic Lyme disease with neurological disorders etc?
Short answer: No. Dr. Jemsek is moving his practice to D.C. It became too burndensome to practice in SC. So now the South will lose our resident expert.
ONLY if they don’t have something to lose! Celebrities with Lyme risk getting future work, insurance denial and the stigma that’s currently associated with chronic Lyme. Owen Glieberman from Entertainment Weekly called people who “think” they have chronic Lyme “a “cult”!
http://movie-critics.ew.com/2009/11/20/oscar-documentary-scandal/
(((LISA)))
Thank you for your courage. And, such.
the film was beautifully shot
I can’t answer that question accurately. But certainly those who are treated soon after a tick bite are much, much less likely to go on to develop chronic Lyme.
I watched “UOS” in Kenai, Alaska and without viewing the movie I would be like so many others still searching for an answer. Thank-You, Andy.
We all have something to lose.
Thanks for your comment. Enlightening.
You’re welcome! Many people have told us that the film has given them an answer after years and years of suffering. Then they start the road back to health. This is very satisfying. But people shouldn’t have to endure such suffering and stigma!!
That your goal is to educate, that must be reaffirming for you.
Lotsa hard work in making a movie of the heart.
How is Mandy doing? was were the side effects, the seizures and so on caused by the bacteria dying off and haivng to be routed out of her?
Marlena? Elise and her son?
Yes, to educate–and yet a film also has to engage and sometimes entertain. We needed to balance the informational aspect of the film with the emotional one. This was a challenge, and this is why characters and story are so important.
Mandy’s doing great: she’s working full time and going to school to be a nurse. I cannot answer medical questions about her case here.
Marlena is also doing great. She’s not only walking, she’s going to college and working as well. Quite a shift, huh!? And where would she have been without Dr. Jones? The irony is she’s one of the lucky ones! Her mother didn’t accept the medical orthodoxy that it was “all in her head.”
Elise’s son is well but has tested positive for the Lyme bacteria.
Art. Huh? Engage? Thought provoking? That’s how I see it too.
But, we have to draw the learner in, eh
A bite of honey, honey?
How do you think progress can be made in terms of insurance companies? Will new guidelines help patients get the care they need?
The resistance to consider the broader chronic pathology of Lyme by the medical community stuns me
These are spirochetes:
Lisa, thank you for hosting Andy. I frequent the big Orange blog and couldn’t believe the (negative) reception there to chronic lyme disease.
I guess lots of educated folks are still very adherent to “authorities”. I was very disappointed that such rigid dogma would persist in a a supposedly progressive community.
We can only hope that the new guidelines will help. However these guidelines were never meant to be used for diagnostic or treatment purposes, but they’ve been used by insurance companies to deny treatment. certainly, if the guidelines admit the existence of chronic Lyme then the insurance companies will no longer have an excuse.
Will you ever consider doing a sequel? Or will that be contingent on the Infectious Disease Society’s decision on changing the guidelines by year end?
This IS stunning. All are essentially shown to be relapsing or chronic illnesses if left untreated.
Tell us about the Bayh-Dole bill and how NIH CDC and universities profit from discoveries of living organisms? What are the pros and cons of this
I think one film on this particular topic is enough, especially if we get more and more visibility. The answer is not to make a sequel, but to use THIS film to create lasting change. IMHO.
and what can help re insurance companies paying for treatment? new guidelines?
Sadly, the US medical community, has very little curiosity, and instead lots of obeisance to authority.
One might think that docs would flood into this fascinating area of medicine — but the way medicine is practiced right now — even aside from draconian medical boards — docs don’t want to touch lyme.
Try calling the Infectious Disease Dept of major universities and asking for an appt because you have lyme. They will practically hang up on you! Seriously. A class action law suit should be considered.
Single payer Medicare for All, I would think!
Oh this is very difficult to explain here. But basically what you are referring to involves the deregulation of medicine and medical research, which resulted in competition among researchers and universities. The result is medical research no longer had the public interest in mind but rather profits. That’s the short answer. And the idea that patents can be made on living organisms is shocking to me, but it;s happening! I think 60 Minutes is planning to do a show on this.
Folks, I need to leave at exactly 6:25. Any last comments or quick questions?
Andy, thank you soooo much for being here and giving us such great insight an making UOS!
thanks very much for your time Andy… wishing you and the film even more success.
You’re welcome it has been my pleasure! For further information please visit our website:
http://www.underourskin.com/
and Facebook page:
http://facebook.com/UNDEROURSKIN
Andy, Thank you for sharing your excellent films with us. Good Luck Oscar night.
Mr. Wilson, just a quick thank you and WOW in regards to your film.
All simply incredible work about an incredibly complex medical issue of itself and our status quo malfeasance with respect to patients.
Thank you also for your time in here tonight, I just got caught up on all the comments. They were all insightful, and the Pups and a few newbie’s all brought something to the table.
Lisa, a big thank you for yet another deep glimpse into our world where humans and politics meet head to head.
This blog FDL and it’s brothers and sisters such as YOUR work Lisa just bring that AHA! moment more often than a semester of a course load could bring.
I greatly appreciate it all. Thanks again Mr. Wilson for your work . . . it deserves an Oscar, indeed.
Good one Roonie, I just did that with an Infectious Disease Doctor in Anchorage, AK who agreed to meet me with a onetime consultation, only with a positive result for Lyme. The MD was the first to receive my news and politely said I need to cancel my one time consult, whats the point? I will travel to the very progressive State of California, where their laws have allowed doctors to treat for Chronic Lyme. Hopefully I made my point.
Thanks Lisa and Andy
and as always, thanks Bev.
roonie and divalux, nice to have your input :)
Edit: and I hope you both can find some satisfaction, I just don’t understand the resistance of mainstream doctors.
How do you know MJF wasn’t treated for Lyme? The Parkinson’s Industrial Complex? There is a large body of medical evidence to support the existence of Parkinson’s and its management. The same cannot be said for these chronic Lyme syndromes, which is the reason for the “hostility”/reluctance for mainstream medicine to support the treatments espoused by the “Lyme Literate” community.
Andy is gone but I will take a crack at a response.
Parkinson’s, MS, ALS — all degenerative diseases that the medical establishment simply manages without knowing their cause, and their mangement of these disease is nothing to brag about. They don’t cure them by any stretch — they just manage the symptoms of neurodegenerative decline.
I am not saying Parkinson’s is caused by borrellia burgdorferi (Bb =lyme). If MJF was treated by mainstream docs for his lyme we can presume it was the usual inadequate (unless his case was acute) 3 weeks of doxycycline.
I do think that some cases of “MS” and “ALS” have Bb has a key etiologic agent. Why? Because of major improvements in so called MS and ALS cases when treated with antibiotics long term. If it is not Bb, it is another microbe that responds to these antibiotics.
Listen to the stories of chronic lyme patients, treat them and see them recover –then you will see for yourself. With 12 minute –even 25 minute visits of today’s medicine, it is impossible to get the patient’s history and to do a good neuro. exam. Lyme, currently according to the CDC, is a clinical diagnosis. Current testing is woefully inadequate for establishing a diagnosis of active disease.
Have you seen the movie? I strongly encourage your viewing it.
Btw, the lyme community welcomes with open arms research dollars to “support the existence” of chronic lyme and it’s treatment.