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On Thursday, July 30, the Infectious Diseases Society of America (IDSA) will hear testimony in Washington DC, as required under an antitrust settlement with the Connecticut Attorney General. 
(For more details, read the post, “Why the IDSA guidelines must be rewritten.”)

This is the single most important event for Lyme patients since the Lyme bacterium was discovered in 1981 by Willy Burgdorfer. Without changes, many of the 300,000 new Lyme patients a year will be denied treatment and insurance coverage for this very serious neurological infection.

On the day of the hearing, we recommend that you open two browser windows on your computer: one to watch the live hearing and one to join the live LymeWatch Tweet Chat and CALDA hearing updates. Under Our Skin producer Kris Newby will be providing live commentary during the event. The hearing will run from 8 a.m. to 5 p.m., Eastern Standard Time.

We highly recommend that you test-drive the webcast and Tweet software ahead of time, so you don’t miss any of the action.

HOW TO WATCH THE LIVE HEARING

1. Go to this IDSA site and click on the spot that says “Click Here”.

http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974

2. Enter a name or email address (this appears to be optional), then click where it says “Click Here to Start”.

3. When you see the next message screen, it will tell you if you’re missing any essential browser add ons, once everything is set to go, just click on the button that says…
“Click Here to Move to the Next Step”.

If you can see and hear the sample video, you should be good to go.

HOW TO JOIN THE LYMEWATCH TWEET

1. Go to twitter.com and sign up for an account, if you don’t already have one. Just fill in your name, come up with a user name, a password, then enter your e-mail address. Then hit “Create My Account.” That’s it. You’re now a Tweeter.

2. To follow the conversation, go to http://tweetchat.com. Click on the icon that says “Sign in to TweetChat with Twitter” Then type in your twitter username and password and hit “sign in”

3. Now, you’ll see “Hashtag to follow:” In that box, type in “Lymewatch”. Now you are in the chat room! You can just watch the conversation or join in. To talk to others all you do is type in your comment and click on “Update”. Your comments have to be 140 characters or less. There are other ways to follow the conversation, but we think this is the easiest.

4. Be sure also to sign-up to follow UNDER OUR SKIN on Twitter.

Questions? Contact Marc Silverstein at marc@onthemarcmedia.com at twitter.com/onthemarcmedia. Spread the word to friends!

HOW TO CHECK ON CALDA UPDATES
You can also read periodic updates on the California Lyme Disease Association (CALDA) blog by CALDA CEO and “Lyme Policy Wonk” Lorraine Johnson throughout the day at this website:

http://www.lymedisease.org/news/idsa_lyme_hearing/156.html

AGENDA (all times listed are Eastern Standard Time)

8:00 AM Welcome
8:15 AM Presentations Begin
11:45 AM Lunch Break
12:30 PM Presentations Resume
4:50 PM Final Remarks
5:00 PM Conclusion

* Tentative and subject to change

Individuals presenting and the order in which they will present follows:

1. Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ

2. Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA

3. Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California

4. Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD

5. Ben Luft, MD, The State University of New York, Stony Brook, NY

6. Allison Delong, ILADS, Providence, RI

7. Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO

8. David Volkman, MD, Nissequogue, NY

9. Sam Donta, MD, Falmouth, MA

10. Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT

11. Brian Fallon, MD, Columbia University Medical Center, New York, NY

12. Sunil Sood, MD, Schneider Children’s Hospital at North Shore, Manhasset, NY

13. Ken Liegner, MD, ILADS, Armonk, NY

14. Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA

15. Steven Phillips, MD, ILADS, Wilton, CT

16. Arthur Weinstein, MD, Washington Hospital Center, Washington, DC

17. Raphael Stricker, MD, ILADS, San Francisco, CA

18. Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY

The Infectious Diseases Society of America (IDSA) will hold a one-day hearing on July 30, via live webcast from the IDSA website, to discuss revisions to its 2006 Lyme Disease Guidelines. The hearing, which will feature patient, physician and scientist presenters, is part of the antitrust settlement that the Connecticut Attorney General established to address “serious flaws” in the guidelines.
(For more details, read the post, “Why the IDSA guidelines must be rewritten.”)

Here are a few simple things you can do to participate in this historic event:

1. Let your Lyme story be heard by filling out this short, confidential patient survey. Results will be presented to the IDSA panel by Lyme patient advocate, Lorraine Johnson, of the California Lyme Disease Association (CALDA).

2. Mark your calendar for July 30, and tune in to all or part of the hearings, which will run from 8am to 5pm EST. http://www.idsociety.org/lymedisease.htm

3. Participate in live, online discussions during the hearings through Twitter. (You’ll be able to listen to the hearings in one browser window while simultaneously discussing the testimony on Twitter in another.) Sign up today for hearing reminders and updates.

http://twitter.com/underourskin

4. Subscribe to the UNDER OUR SKIN and Lyme Policy Wonk blogs to receive backgrounders on the issues that will be discussed during the hearings.

http://underourskin.com/blog/

http://www.lymedisease.org/news/lymepolicywonk/

In this era of health care reform, it’s crucial that patient voices be heard before vital freedoms—like your ability to choose among treatment options—are taken away. We hope you will join us in this important campaign for Lyme patient rights.

In late May, Virginia Congressman Frank Wolf delivered DVDs of UNDER OUR SKIN to every member of the Senate and House Health Appropriations Committees–almost 100 of them. Along with the DVD, he wrote a “Dear Colleague” letter in which he urges action for Lyme research and awareness, and highlights the political logjam which is blocking effective action. We’re proud that UNDER OUR SKIN is being used as a tool to educate not only the public but also legislators, and that it is finding a place in the current national debate about health care reform.

Feel free to share in the comments section below, or in our Feedback page online, how you have used or are using the movie to impact change, locally or nationally.

All nationwide theatrical screenings of UNDER OUR SKIN on Saturday, June 27th are presented in conjunction with President Obama’s Organizing for America’s National Health Care Day of Service. We are joining with hundreds of others grass-roots activists and initiatives to bring awareness to the country’s failing health care system. UNDER OUR SKIN is a case study for what’s wrong and needs to be fixed. By aligning it with the current national debate we can create awareness and spur change, bringing hope to Lyme sufferers and others abandoned by the broken systems of medical research, health delivery, and insurance. Please make a special effort to watch UNDER OUR SKIN in theaters on June 27th, including Los Angeles, San Diego, Washington, DC, and Santa Cruz. Bring a posse with you, join with others demanding change, and turn a trip to the movies into a national health care day of service.

Three days after the theatrical release of UNDER OUR SKIN, enthusiastic reviews are accumulating. Stephen Holden, top film critic at the The New York Times called it “heart-rending” and an “inflammatory documentary [that] takes aim at the medical establishment.” Here is a sampling of other reviews:

“Head-spinning…riveting…a rigorously researched and highly thorough piece of investigative reporting.”
- Lauren Wissot, Slant Magazine

“[A] dizzying and dramatic documentary…handsomely reported and photographed.”
-Andrew O’Hehir, Salon

“Infectiously persuasive…targets both the heart and brain.”
- Sarah Sluis, Hollywood Reporter

“A scary expose [and] damning indictment of the broken health care system.”
- Kam Williams, NewsBlaze

“A powerful film and cautionary tale….as significant an indictment of American medical practices as Michael Moore’s SICKO.
- Curt Schleier, Film SoundOff

“Compelling…makes a very convincing case [about] one of the greatest medical failures of all time.”
- Matthew Lucas, From The Front Row

“A vital, insightful, brave and moving documentary that will wake you up and shake you up.”
- Avi Offer, NYC Movie Guru

While press coverage and positive reviews have been abundant, box-office returns have not fared as well. We need to take the film and the issue from Lyme Street to Main Street, and the best way to make this happen is to fill seats in theaters. Otherwise, the movie won’t open in successive markets and have the opportunity to spread awareness beyond the Lyme community. Even if you’ve seen the film, we’re calling on you to make it to the theater or buy advance tickets. Make your voice heard through the box-office!

Tickets are still on sale in New York, and now on sale for Los Angeles, San Diego, Washington, Santa Cruz, and other cities.

This is our chance to get the issue of Lyme disease (and the broken healthcare system it uncovers) before a mainstream audience. But we must come out in numbers so that UNDER OUR SKIN will open in more and more markets, increasing exposure and publicity. Selling-out opening weekends is especially important. Here are some practical things you can do:

• Contact your local art house or independent theater (click here for a partial list) and convince them to show UNDER OUR SKIN. Contact our distributor, or email us so we can help facilitate.
• View the list of upcoming screenings and download pre-made flyers to help promote them.
• Buy-out blocks of tickets or entire shows, turning a theatrical screening into a community educational event; then organize with others to get a speaker, solicit press and fill seats. Remember, it’s okay to purchase tickets even if you can’t attend. Click here for screening tools, or email us for tips.
• Write emails and blogs urging friends and family to come out in numbers to screenings. Click here for a sample template suggested on CALDA’s blog, or use our online program to help spread the word.
• Donate now to the Uncover the Epidemic Awareness Campaign, so we can continue our work of using the film to catalyze awareness and change. This is a grass-roots effort and our ability to penetrate mainstream media and public consciousness is dependent on your support.

See you at the movies!

On February 28, 2007, the UNDER OUR SKIN film crew interviewed Willy Burgdorfer, Ph.D., M.D., and Scientist Emeritus at the National Institutes of Health (NIH), for three hours at his home in Hamilton, Montana. Dr. Burgdorfer is the discoverer and namesake of the spirochete (a type of bacterium) that causes Lyme disease, called Borrelia burgdorferi. He has received numerous awards, including the Robert Koch Gold Medal, the IDSA Bristol Award, the Schaudinn-Hoffman Plaque, and the Walter Reed Medal. He is a coeditor of the book, “Aspects of Lyme Borreliosis,” and has published over 220 research papers.

Just as we began filming, there was a pounding on the door, and we found ourselves facing someone who turned out to be a top researcher at the nearby Rocky Mountain Laboratories, a biolevel-4 NIH research facility. Standing on the porch, our uninvited guest said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.”

We were stunned. After all, Dr. Burgdorfer had been retired from the lab since 1986. We were there to talk to a private citizen, about the history of a very public discovery that had put him on the short list for a Nobel Prize. Earlier that year, the NIH had refused our requests to interview any of their Lyme researchers. What was going on? Why would the NIH want to censor information about the fastest growing bug-borne disease in the United States?

Fortunately, our iron-willed film director, Andy Abrahams Wilson, turned the NIH handler away, and what followed was an amazingly candid interview about Lyme disease—its dangers and its controversies. Here are highlights from this three-hour interview:

Andy Wilson: Could you describe the “Aha!” moment when you discovered the spirochete that causes Lyme disease?

Dr. Burgdorfer: I remember that time quite well. Allen Steere called me in the summer of 1977 and said, “Willy, I would like to discuss with you the methods you are using in dissecting ticks, and [looking] for microbial agents.” I sat with him about two hours that summer and told him over the phone how to dissect ticks. Then about two months later he called again, and I repeated, again, the same thing. And he finally said [in 1981], “Well, I’m willing to send you some serum [samples]. I want you to examine them for me.”

But it was not an “Aha” [moment]. It was a “What in the hell? What’s in that smear?” And then my work [on relapsing fever] as a Swiss student came back. [I said to myself], “Willy, these are spirochetes!” The slide showed long slender forms, a little bit curved, and they were only in the mid-part of the tick. Nowhere else. There were so many people who said, “That is impossible Willie. You can’t get spirochetes out of hard-bodied ticks.” [But from my work on] relapsing fever ticks from Africa, I knew what a spirochete looked like. The Belgian Congo and Kenya are hotspots for relapsing fever. Even Livingston [the African explorer and Scottish missionary] was exposed, and he called it “tick fever.”

Andy Wilson: And what did they call this spirochete?

Dr. Burgdorfer: I discovered the agent producing Lyme disease, so they called it Borrelia burgdorferi, after my name, Willy Burgdorfer. The initial findings were published right away in Science magazine. And even today, [this discovery] is considered a breakthrough in spirochetal research. There are many laboratories that are using our techniques, applying them to syphilis, because of similarities.

Andy Wilson: What are the similarities between Borrelia burgdorferi and syphilis?

Dr. Burgdorfer: The similarities that I know of are associated with the infection of the brain, the nervous system. The syphilis spirochete, Treponema pallidum has an affinity for nerve tissues. The Borrelia burgdorferi spirochete very likely has that too. Children are especially sensitive to Borrelia burgdorferi.

The Lyme disease spirochete is far more virulent than syphilis. We don’t know the end yet. And [we] can’t even make a [blood] smear with Borrelia burgdorferi and see the organism. It’s there. But you don’t see it. You cannot find this spirochete. Why not? After all, I have a sick person here. He is trembling all over. His synovial fluid is full of spirochetes. But when it comes to blood, it’s not there. So there is something associated with this organism that makes it different.

Andy Wilson: Why is Borrelia burgdorferi so hard to find in the body and culture outside the body?

Dr. Burgdorfer: Borrelia burgdorferi in the tissues of a patient is extremely difficult to demonstrate, because, first of all, you don’t like somebody to take samples out of your brain [to look] for spirochetes. The same with other tissues. Every system in your body can be infected with spirochete. But to prove that is extremely difficult. It demands surgical work, which is very expensive

Andy Wilson: Are you a believer in the idea of persistent Lyme infections?

Dr. Burgdorfer: I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients.

Andy Wilson: How do you feel about the controversy in the Lyme world?

Dr. Burgdorfer: The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research.

There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”

Andy Wilson: What about the Lyme vaccine?

Dr. Burgdorfer: The [first generation] vaccine was not specific enough and not strong enough. So what is needed is additional work on a vaccine. What we have right now is a good example of work that goes to industry [too soon], and industry says, “Okay fine, get it out. “ And somebody says, well it’s too early. And it’s already on the market … and you see that every day …You see that this company is falling down, and these guys are realizing that the vaccine work is full of holes and never should have come out. A lot of people are going to pay for that. They’re going to get sick with Lyme as a result of the vaccination. Then you’re in trouble.

Andy Wilson: What do you think about the relationship between Lyme and neurodegenerative disease like Alzheimer’s and Parkinson’s disease?

Dr. Burgdorfer: Right now they are building a research center at Columbia University, to study this possibility, because many physicians believe that neurologic manifestations, regardless [of] what type, are typical for Lyme disease.

Andy Wilson: What do you most regret about what has happened, in the aftermath of your discovery?

Dr. Burgdorfer: I most regret that the technology used to diagnose and to even treat Lyme disease wasn’t worked all the way through. It [was based on] only a few results, then published. And later on, people [wanted] to take them back. I think Borrelia burgdorferi is too serious an [infectious] agent to play with, and with many laboratories, the severity of the disease is overlooked.

Andy Wilson: What’s the next stage of research?

Dr. Burgdorfer: Neurologic manifestations have to be the next stage of research. Also [Borrelia burgdorferi’s] antigenicity. Ecologically, the diversification of Borrelia is tremendous. Because of the spirochete’s ability to change—to change its physiology, to change its “antigenic” structure for instance—a spirochete may be capable of producing disease or not.

And one piece of work that needs to be done, that has lately been neglected, is development of the spirochete—whether it transfers [genes via] fission, or whether individual spirochetes have the ability to break into spheres or particles. We don’t know yet how they do it but they do. They go into the lymphocytes, they go into every tissue. Just because we have not seen [them], does not mean that they are not there. Once the immune response is down, are [they] capable of re-entering the bloodstream and producing disease?

Andy Wilson: Do you have Lyme?

Dr. Burgdorfer: No. I don’t. But I say that cautiously. Because I have been working with Lyme disease ever since 1981.

_______

Soon after we turned-off the camera and began packing up our gear, Dr. Burgdorfer told us with a wry smile, “I didn’t tell you everything.”

Our friends at the California Lyme Disease Association (CALDA) just wrote a new blog about the importance of filling theaters during the upcoming theatrical release of UNDER OUR SKIN. We thank them for their insight and support, and want to pass on an innovative way to get friends and family to go to the movies. They suggest emailing the following letter, which you can cut, paste, and edit to your liking:

Dear Friends:

You may know that in the past few years, our family has been turned upside down by Lyme disease. It’s a wretched condition that I wouldn’t wish on anyone. But the physical misery it causes is made ten times worse by the fact that the medical community, the insurance companies and even government health officials are trying to sweep this illness under the rug. That makes it harder for our family and others like us to get the medical care we need to get well.

In the years we have been coping with Lyme, many of you have generously asked if there was anything you could do to help us. Right now, the answer is yes.

On June [19/26, or other date], a very important movie called UNDER OUR SKIN will open in [New York/Los Angeles, or other city]. The film shines a light on significant problems in our health care system—ones which will affect your family, too, if any of you are unlucky enough to be among the 200,000 Americans who will catch Lyme disease this year.

I would consider it a personal favor to me if you would go see this movie in [New York/Los Angeles, or other city], preferably on opening weekend. And take people with you! Raising public awareness of Lyme disease and all its complexities is a vital first step towards solving this national crisis.

I promise it won’t be a boring evening. As Michael Moore so ably proved with SiCKO, a provocative documentary about health care will keep you on the edge of your seat! UNDER OUR SKIN is riveting, gut-wrenching and powerful. You’ll be thinking about it and talking about it for weeks to come.

All the Best,

[your name here]

Click here to read the full CALDA blog by Dorothy Leland

One thing I’ve always found puzzling is why the Centers for Disease Control (CDC) continues to disseminate misleading data from a Lyme disease tracking system that undercounts human cases by a factor of ten. (Click here to view or download PDF version of above graph showing the magnitude of this miscount.)

For example, in the article, “Bad Lyme Bug Spreading,” CDC medical epidemiologist Kevin Griffith, MD, MPH said:

“Although the 20,000 cases reported to the CDC in 2006 were fewer than the 23,000 cases reported in 2005, Griffith says the true number of cases is probably larger.”

While this statement is technically factual, it cites two-year old data and doesn’t present the information that is relevant to health care providers, state health departments and people at risk for Lyme disease. The CDC needs to communicate the true risks of getting Lyme disease in each state and how many people are suffering from the disease, not some internal tracking numbers used by a few CDC epidemiologists.

A more accurate, honest statement would be:

“In 2007 there were 27,444 reported cases of Lyme disease, a 37% increase over the previous year. It’s important to note that the actual number of new Lyme cases in the U.S. could possibly exceed 300,000 per year due to inherent flaws in the Centers for Disease Control’s passive case reporting system.”

The U.S.’s Lyme reporting system is complex, labor-intensive, and overly reliant on an expensive, two-tiered testing protocol that misses about 75% of the positive cases. (In contrast, the AIDS screening test only misses about 5% of the positive cases.) Many physicians are afraid to report Lyme cases, after the highly publicized medical board hearings of Lyme specialists like Dr. Charles Ray Jones and Dr. Joseph Jemsek. What’s more, the double-digit growth of the Lyme epidemic and cutbacks in state health department services is driving this reporting system to its breaking point.

The overworked health department in New Jersey quantified the absurdity of the Lyme surveillance process in their report, “Burden of Lyme Reporting” (2001-2006). In this study, they found that:
–Each Lyme case took an average of 2 months to close
–24% of Lyme cases were never closed or counted
–The Lyme reporting process in New Jersey alone required 5 full-time employees to handle

Unfortunately, when the CDC and the Council of State and Territorial Epidemiologists (CSTE) were presented with this report in 2007, they revised the surveillance process in a way that will further hide the true size of the Lyme epidemic. Rather than fixing the root cause of the reporting inaccuracy — bad tests — they added complexity to the process, creating three distinct categories of Lyme cases (“confirmed”, “probable”, and “suspected”) for health surveillance workers to sort out. I suspect that these busy employees will throw time-consuming cases into the “probable” and “suspected” buckets, and based on past CDC behavior of sweeping bad news under the rug, those cases will never see the light of day, creating the illusion of a drop in total US Lyme cases.

The tragedy of this broken reporting system is that it is ruining lives. Physicians make clinical decisions based on the CDC case numbers, and if they think that Lyme is rare in their area, they may not consider it as a differential diagnosis. Congress allocates research funding based on case numbers, too, and by underestimating these numbers by a factor of ten, grants will go to other diseases. And the band will play on.

It’s time for the CDC and CSTE to stop downplaying the magnitude of the Lyme epidemic and to put the truth back into the reporting system.

Click here to view/download PDF version of graph “Lyme Cases 1982-2008″

Five years ago, film director Andy Abrahams Wilson and the Open Eye Pictures crew set up a camera at the “Hope To Heal” Lyme conference, and asked the attendees to, “Tell us your Lyme disease stories.” Hundreds of heart-wrenching stories later, Andy knew he had stumbled upon one of the most important untold stories in medicine – that of the tragically ignored Lyme disease epidemic.

Today, a year after our premiere at the Tribeca Film Festival, we are thrilled to report that UNDER OUR SKIN has been shown in 30 film festivals and almost 500 community screenings around the world. In addition, the film has won numerous awards and has been featured in dozens of national and local TV and radio spots. And on June 19th the film will begin its theatrical release across the U.S. (First stops will be the IFC Center in New York and the Laemmle Music Hall Theater in Beverly Hills, CA.)

UNDER OUR SKIN sheds light onto the science and politics of Lyme disease, as well as the personal stories of lives destroyed by it. For those afflicted with Lyme disease, the film provides a way to help friends and family understand the suffering and stigma that patients must struggle with on a daily basis. And for those patients just beginning the treatment process, the film offers hope.

The shortest path to public awareness and understanding is to show people the ravages of the disease with their own eyes. And this is where a film can make a huge difference. As human beings, we are conditioned to respond to real stories of real people, and these emotions can be harnessed to affect change.

Here are some ways you can help us uncover the epidemic:

1. Convince your local independent theater of the importance of running the film. Have interested theaters contact our distributor Ken Eisen of Shadow Distribution at 207-872-5111 or shadow@prexar.com for a week long run.

2. Look for participating theaters in your area by visiting our website screenings page, then urge local Lyme support groups, as well as friends and family, to attend. You can download posters from our website, and then post them around town to help publicize.

3. Organize a community awareness event around a theatrical run. Some ideas: Have a local sponsor or group buy blocks of tickets for Lyme community members or friends; organize a Q&A mixer at a nearby venue immediately following a theatrical showing; or set up an informational booth outside the theaters. For support and ideas, contact Open Eye at info@openeyepictures.com.

4. Donate to our national outreach campaign to help ensure that UNDER OUR SKIN becomes the tool of change that it has the potential to be.

Margaret Mead, the influential cultural anthropologist once said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

If we all pull together, we can make a difference!

Last week UNDER OUR SKIN came to Canada to play at the Okanagan International Film Festival in the breathtaking lake region of British Columbia’s Okanagan Valley. The Canadian Lyme Disease Foundation (CLDF) generously sponsored my attendance, as well as film subject Dana Walsh, who arrived by car from Seattle with her Canadian husband Tim. We were greeted with great Canuck hospitality, including two private CLDF receptions and a festival boat ride. The high point of the weekend was our sold-out screening at a local multiplex, which turned out to be the most attended film screening at the festival. Kudos to CLDF member Cali James for her magnificent PR work prior to the festival! I polled the audience and at least half had no relation to Lyme disease, boding well for the film’s “crossover” appeal as we move closer to theatrical release. CLDF President Jim Wilson (no relation!) presented us with a $2,000 check towards our outreach campaign, telling us that UNDER OUR SKIN was the best outreach tool ever for the Lyme community, and driving home the point that this was an international crisis: Lyme disease doesn’t just stop at the Canadian border (or any borders), as the official CDC maps would have us believe.

Not only were we feted with fun and financial assistance, but UNDER OUR SKIN was awarded “Best International Documentary” PLUS the festival’s top honor, the “Audience Favorite” award! Many thanks to the festival organizers, and especially to the Canadian Lyme Disease Foundation for their generosity and continuing support.

Click here to see more festival photos on our Facebook page

Click here to view a short video interview with UOS’s Andy Abrahams Wilson and Dana Walsh, and CLDF’s Jim Wilson

It has been quite a busy and eventful year for UNDER OUR SKIN, with accolades from audiences and press worldwide. At film festivals, we’ve received five "Best Documentary" awards, two "Audience Favorite" awards, and top honors from medical and film organizations. We’ve also been successful in bringing the film to viewers free of charge in hundreds of community screenings worldwide. And with national spots on network TV and radio, our film has brought unprecedented attention to the issue of Lyme disease. But we have more work to do.

We are now gearing up for the next phase–the Uncover the Epidemic national outreach campaign, which we’re launching in conjunction with our theatrical and educational DVD release this summer. In addition to getting the film before mainstream audiences, we’ll be partnering with national organizations to bring Lyme awareness into current debates on health care and the environment. We will also be working to get the film into classrooms, medical schools and libraries, so that the truth about Lyme disease (and the system that has kept it hidden) can no longer be ignored.

In the absence of large studios backing our efforts, we are financing this work ourselves. We are actually paying to bring the film into theaters. Revenue from DVDs sold to date is all going back into outreach and distribution. But it is not enough. We need to raise $100,000 in the next two and half months to continue our vital outreach work, including our awareness tour, advertising, PR and promotional materials.

Never before has the Lyme community had a media tool like UNDER OUR SKIN. It is imperative we don’t pass up this opportunity to create lasting mainstream awareness and change. As we are a 501(c)(3) nonprofit, your contributions are fully tax-deductible–and appreciated no matter what you can afford. Donors who contribute $250 or more will receive a signed movie poster and DVD when the “fully loaded” version is available later this summer. Donors who give $1000 or more (by June 1st) will receive these gifts plus recognition in the upcoming DVD discussion booklet.

• Make a donation online using the widget above, or go directly to the UOS "donate" page.

• Copy the widget HTML above and embed it in your own blogs and web pages to help spread the word.

• Send a check payable to Open Eye Pictures/UOS by mail to the office address.

Thank you so much for your belief in our project and your continued support. Please check out www.underourskin.com to see the impact the film is already having, and how we’re poised for more.

> Click here if the widget does not appear or function correctly

From Maine to Texas to Georgia to the Carolinas to DC, UNDER OUR SKIN is being used in an unprecedented way to impact Lyme disease policy on the local, state and national levels. We invite you to share with us how you or your organization are using (or have used) the film to lobby for legislative or healthcare change. Let us know the details in the comments section below. We’ll compile the list and share with everybody at the end of May (Lyme Disease Awareness Month) and show how awareness can be turned into action.

We’ve received many positive reviews of our posting of Lyme-inspired music, with the common mantra of the power of art to help heal. So we’re posting a new blog with this self-portrait by Linda Marcille, who tells us, “I was doing the painting as an art exercise to help me deal with my own suffering.” But through the process Linda felt called to share the experience of other sufferers, not just her own. So she started a website called the Lyme Awareness Art Project, in which she posts art and poetry by people with Lyme.

I also believe that art helps heal, which is why I believe in the power of film and why I was drawn to make UNDER OUR SKIN–a work of art (I hope) as much as a piece of journalism. It is the tension between–and creative struggle to reconcile–the shifting worlds of the seen and the unseen, the dreams and the waking hours, the beauty and the horror that have the potential to shift consciousness–our own and others’–in times of unease and disease. What do you think?

Singers Lisa Bevill, Alice Bartels-Granered, and Anna & Lorraine Hart

UNDER OUR SKIN hears from individuals every day who share with us their personal stories and struggles with Lyme disease. Some of them are artists and musicians who create art and music from despair and inspiration. Turning crisis into creativity helps heal, which is why we want to shine a light on three people who know this well, and who use their talents to bring hope to themselves and others.

Lisa Bevill, our honored activist of the month, is a well-known Christian recording artist from Nashville who has recorded with artists Garth Brooks, Michael Bolton, Faith Hill, Amy Grant, and many others. She has also recorded several of her own albums. The cover song from her most recent CD, When the Healing Comes, was written during her battle with Lyme disease, when she was very sick but still undiagnosed. Since her diagnosis, she has worked tirelessly to educate others about the illness, promoting UNDER OUR SKIN in concerts and media interviews. Watch and listen to a music video of When the Healing Comes, and learn more about the music of Lisa Bevill.

Alice Bartels-Granered is a singer/songwriter sometimes compared to Carly Simon, Joni Mitchell, Lucinda Williams and Natalie Merchant. She lives with her family in Nashville, but she is originally from New Jersey where both she and two of her three children caught Lyme disease from tick bites. As she explains, “I knew it was Lyme from the onset. It was common sense but it took me 3 years to prove, then 8 years of trying to get well with different treatments.” Alice wrote a song Carry Me out of exhaustion and frustration with fighting the disease. “You can only fight for so long before you are completely depleted,” Alice said. “I was at that point when I wrote Carry Me–where you run out of ‘you’ and have to either give up (not an option if you have 3 kids) or give ‘UP’–let go and let God and your loved ones carry you for a while, whether you like it or not.” Listen to Carry Me now, and learn more about Alice’s work.

Lorraine Hart, from the Puget sound area of Washington State, has been a professional musician for 40 years. Her 28-year old daughter Anna Hart, also a talented singer, contracted Lyme disease on a camping trip in Indiana 11 years ago, but went undiagnosed and misdiagnosed for 8 years. Luckily, she now is treated by a lyme literate physician and is improving after 18 months of IV antibiotic treatment. Her mother Lorraine has been her 24/7 caretaker for six years and had to stop performing during the worst years of her daughter’s illness. Lorraine always wanted to write a song about Lyme disease, but being so close to it made it a painful process. With the encouragement of her long-time friend and fellow musician, Jane Eamon, they co-wrote the lyrics to the song, and Lorraine and Anna Hart recorded it together. Listen to The Suffering of Lyme.

Thank you all for sharing your lives and creative expressions.

Over 400 people, including government and healthcare policymakers, attended the pre-release theatrical premiere of UNDER OUR SKIN in Charlotte, NC on March 20th. It was the first 35mm film screening anywhere! Co-sponsored by Turn The Corner Foundation and the National Capital Lyme Disease Association, the event awarded honors to Lyme pioneer Dr. Joseph Jemsek, filmmaker Andy Abrahams Wilson, Mandy Hughes, and others; and was MC’d by Jordan Fisher Smith. Many thanks to the event organizers for orchestrating such a well crafted model for community engagement and using the film as an effective tool for advocacy and awareness. Check out pictures from the event on our Facebook page.

The film will be opening in theaters nationwide starting in June. Contact your local independent theater and ask them to show the film, and organize a community event in conjunction with a theatrical screening. Contact us for more information and to find out how you can help.

On April 3, 2009, the Infectious Disease Society of America (IDSA) will close its public submission period for input into the scientific evidence on the diagnosis and treatment of Lyme Disease. After this deadline, the guidelines review process will proceed as follows:

“A panel of eight to 12 physicians and scientists will be assembled to review and critically appraise the literature on Lyme disease. The panel will also consider data and other information submitted to IDSA and will hold a public hearing where individuals may present data to the panel for consideration. At the conclusion of this process, the review panel will evaluate whether each of the recommendations in the 2006 guidelines is supported by the scientific evidence and will make a recommendation to IDSA as to whether its 2006 guidelines should be revised or updated. Any proposed recommendations shall require a supermajority of 75 percent or more of the total voting members of the panel.”

Over the weekend I reread the 2006 IDSA Lyme Guidelines, and I must state emphatically that these biased medical guidelines must be rewritten as soon as possible, for the sake of our nation’s health and our reputation in the worldwide scientific community.

Over the past decade, two opposing camps have emerged in the battle over this tick-borne illness. One camp is represented by the Infectious Diseases Society of America (IDSA), led by a group of academic researchers. This group maintains that Lyme disease is ‘hard to catch and easy to cure’ because the infection is rare, easily diagnosed and treated with two to four weeks of antibiotics. This group claims that chronic infection by the Lyme spirochete, Borrelia burgdorferi, is rare or nonexistent.

The opposing camp is represented by the International Lyme and Associated Diseases Society (ILADS), led by a group of community-based physicians. Its members argue that Lyme disease is not rare and tick bites often go unnoticed, especially since commercial laboratory testing for Lyme disease is inaccurate. Consequently, the disease is often not recognized and may persist in a large number of patients, requiring prolonged antibiotic therapy to eradicate persistent infection with the evasive Lyme spirochete.

There are literally thousands of peer-reviewed studies and scientific papers supporting the community-based physician view of Lyme disease. Based on our four years of research for UNDER OUR SKIN, we believe the IDSA’s view of the disease is biased because:

1. The IDSA guidelines authors are mostly “ivory-tower” New York and Connecticut academic researchers isolated from the clinical realities of mixed-coinfection, geographically diverse tick-borne disease cases in the field.

2. The IDSA guidelines authors have significant conflicts of interest that have biased their treatment and diagnostic recommendations. These conflicts include:
—Commercial interests in tick-borne disease tests and vaccines.
—Supplemental streams of income from insurance companies that profit from a restrictive definition of Lyme disease.
—Involvement in Lyme patient and ILADS physician lawsuits.
(For more details, read about the Connecticut Attorney General’s investigation into the “Flawed Lyme Disease Guideline Process” here.)

Unfortunately, the IDSA is fighting tooth and nail to avoid rewriting any of the guidelines. While I’ll elaborate on their dirty political tactics in a future post, I’d like to point out that since Attorney General Blumenthal began his investigation into the 2006 IDSA Lyme guidelines, over 500,000 Americans have acquired Lyme disease. A large percentage of these sufferers will be undiagnosed or misdiagnosed because of these guidelines. Then, we’ll have to add another 250,000 patients to this list by the time the IDSA announces the results of this evidence gathering phase.

What a tragic waste of human lives and health care dollars.

A summary of idsa_vs_ilads_lyme_guidelines.doc is attached here.
A one-page overview of flaws in IDSA diagnostic criteria for early Lyme is attached here.

For evidence submission guidelines, visit the IDSA website.

As always, I recommend inquisitive readers go right to the source, by reviewing the two opposing guidelines here:
IDSA Guidelines
ILADS Guidelines

We are proud to announce the premiere screening of the theatrical version of UNDER OUR SKIN on March 20th at the Ballantyne Village Theatre in Charlotte, NC. The film will have a one-week run in the theater as a special pre-release theatrical engagement, and then open nationwide in July 2009. UNDER OUR SKIN director Andy Abrahams Wilson, and subjects Mandy Hughes, Jordan Fisher Smith, and Joseph Jemsek, M.D. will be in attendance.

The March 20th opening night event will be a special invitation-only gala hosted by the Jemsek Specialty Clinic and sponsored by Turn the Corner Foundation and the National Capital Lyme Disease Association. The event is an examplary model for coordinating opening nights in theaters with local Lyme awareness events. In this way, theatrical screenings become forums for education, advocacy, community building and media attention. They also boost viewership and interest in the film’s theatrical screenings, helping the film open in more and more markets countrywide, and putting Lyme disease once and for all into public consciousness.

An example for what is possible when groups and goals join together, the Into The Light event has generated buzz in the Charlotte media world. Last week, Dr. Joseph Jemsek and UNDER OUR SKIN’s Jordan Fisher Smith spoke and took listener questions for almost three hours on WBT radio. The interview was extended by over an hour because of the flood of listener interest.

We thank the event organizers for this class-act event, and look forward to more such collaborations across the country.

– Click here to view the press release on CNBC about the Into The Light event.

– Click here to visit the Into The Light gala event website.

– Contact us to discuss your ideas for theatrical/community screenings in your area.

In light of the tragic shooting in Illinois, we’d like weigh in on the issue of whether the shooter’s case of late-stage Lyme disease could have caused violent behavior. First, during our four years of research for the film, UNDER OUR SKIN, we interviewed a number of patients who had bouts of “Lyme Rage” before appropriate treatment. While it doesn’t seem that common, it does seem possible. In addition, many of the physicians we interviewed, specifically the ones who treat a large number of Lyme patients, acknowledge that they have had patients with Lyme Rage. And finally, there are over 100 peer-reviewed medical journal articles linking tick-borne diseases to mental symptoms and quite a few that reference Lyme-induced rages. For your convenience, I’ve cited some of these articles at the bottom of this post.

In this morning’s press, the IDSA and CDC came out with guns blazing, denying the possibility of Lyme Rage.

Dr. Gary Wormser, the lead author of the controversial Infectious Disease Society of Americe (IDSA) Lyme guidelines, said, on WebMD:

“I don’t know of any convincing evidence that Lyme disease can cause violence or psychosis.”

Paul Mead, a medical epidemiologist with the CDC, said in an article by Roger Schlueter of the News-Democrat:

“So the spirochete certainly can, in the lab, attach to nerve cells, and it certainly causes acute inflammation of nervous tissue,” Mead said. “But whether that would cause psychiatric illness is, as far as I know, impossible to say.”

While I personally find their Lyme denialism baffling, I encourage those of you interested in the science to read the peer-reviewed journal articles listed below, and decide for yourself.

The News-Democrat also cites the Prague study, which says:

“In 2002, a study at the Prague Psychiatric Center involving 1,900 people found that people with psychiatric illness had about a 30 percent increased incidence of Lyme disease antibodies in their blood compared to other study participants.”

Isn’t it worth keeping our minds open to the emerging evidence that the Lyme bacteria — a neurologically invasive spirochete just like syphilis — could be the root cause of a myriad of psychiatric disorders that are currently considered incurable? How costly to our society and inhumane to medicate and lock up thousands of supposedly mentally ill people, when they may have a treatable bacterial infection.

Lyme-Induced Psychiatric Disorders
Peer-Reviewed Literature from Around the World

Lyme disease: a neuropsychiatric illness.
Fallon BA, Nields JA. Am J Psychiatry. 1994 Nov;151(11):1571-83.

“A broad range of psychiatric reactions have been associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.”

Late-stage neuropsychiatric Lyme borreliosis. Differential diagnosis and treatment.
Fallon BA, Schwartzberg M, Bransfield R, Zimmerman B, Scotti A, Weber CA, Liebowitz MR. Psychosomatics. 1995 May-Jun;36(3):295-300.

“Although dermatologic, articular, cardiac, ophthalmologic, and neurologic manifestations are well known, it is less well known that psychiatric disorders may also arise. Depression, panic attacks, schizophrenia-like psychotic state, bipolar disorder, and dementia have been attributed to Lyme borreliosis.”

Functional brain imaging and neuropsychological testing in Lyme disease.
Fallon BA, Das S, Plutchok JJ, Tager F, Liegner K, Van Heertum R.
Clin Infect Dis. 1997 Jul;25 Suppl 1:S57-63. Review.

“Patients with Lyme disease may experience short-term memory loss, severe depression, panic attacks, unrelenting anxiety, impulsivity, paranoia, obsessive compulsive disorder, personality changes marked by irritability and mood swings, and rarely, manic episodes or psychotic states.”

The underdiagnosis of neuropsychiatric Lyme disease in children and adults.
Fallon BA, Kochevar JM, Gaito A, Nields JA.
Psychiatr Clin North Am. 1998 Sep;21(3):693-703, viii.

“In addition to the disorders listed by Kohler and Omasitis, Lyme disease appears to be capable of causing syndromes that manifest as personality change, depersonalization, mania, hallucinations, (auditory, visual, and olfactory), paranoia, cataonia with stupor and mutism, somatization disorder, obsessive compulsive disorder, violent outbursts, panic attacks and disorientation.”

The neuropsychiatric manifestations of Lyme borreliosis.
Fallon BA, Nields JA, Burrascano JJ, Liegner K, DelBene D, Liebowitz MR.
Psychiatr Q. 1992 Spring;63(1):95-117. Review.

“Lyme disease is aptly called the “new great imitator,” and it can imitate psychiatric disorders no less than medical ones. Psychiatrists working in endemic areas are well advised, then, to keep Lyme disease in mind as part of their differential diagnosis for a broad range of disorders including, for instance, panic attacks, somatization disorder, depression, and dementia.”

A 25-year-old woman with hallucinations, hypersexuality, nightmares, and a rash.
Stein SL, Solvason HB, Biggart E, Spiegel D.
Am J Psychiatry. 1996 Apr;153(4):545-51.

“The [Lyme] patient expressed a delusional belief that she was controlled by an attractive popular male former high school teacher who had put a curse on her family before her birth and was now sexually obsessed with her.”

Germany: Neurologische Klinik mit Poliklinik, Universität Freiburg.
Lyme borreliosis in neurology and psychiatry
Kohler J. Fortschr Med. 1990 Apr 10;108(10):191-3, 197.

“Involvements of the CNS are expressed not so much in focal deficits, as in diffuse psychopathological disorders… The clinical symptomatology may be dominated by severe psychiatric syndromes.”

Czechoslovakia: Prague Psychiatric Center
T. Hajek: hajek@pcp.lf3.cuni.cz
Higher prevalence of antibodies to Borrelia burgdorferi in psychiatric patients than in healthy subjects.
Hájek T, Pasková B, Janovská D, Bahbouh R, Hájek P, Libiger J, Höschl C. Am J Psychiatry. 2002 Feb;159(2):297-301.

“These findings support the hypothesis that there is an association between Borrelia burgdorferi infection and psychiatric morbidity. In countries where this infection is endemic, a proportion of psychiatric inpatients may be suffering from neuropathogenic effects of Borrelia burgdorferi.”

Poland: Klinika Psychiatrii, Białymstoku.
Rudnik I, Konarzewska B, Zajkowska J, Juchnowicz D, Markowski T, Pancewicz SA.
Pol Merkur Lekarski. 2004 Apr;16(94):328-31.

“Mental state examinations and psychometric testing revealed in majority of the patients, mainly in those suffered from neuroborreliosis and erythrema migrans evidence of various psychiatric symptomatology. The range of psychiatric presentations included: mild cognitive deficits, organic mood disorders, mild dementias, depressive and anxiety episodes with non organic etiology.”

One of the more surprising observations made while filming Lyme sufferers for UNDER OUR SKIN, was that almost all had been misdiagnosed as having “hypochondriasis,” or, “it’s all in your head” syndrome before receiving a Lyme diagnosis.

The SPECT scan above shows the brain of a Lyme patient before and after treatment with IV antibiotics. The healthy orange areas of the brain are receiving adequate blood flow. The black and blue areas are starved for oxygen due to inflammation caused by the Lyme bacteria. (Photo courtesy of Dr. Robert C. Bransfield, MD, and Psychiatric Times.) A person with that much of their brain out of commission may exhibit any number of neurological symptoms, including depression, rages, seizures, and even hallucinations.

Though it’s fairly obvious that this brain is impaired, SPECT scans are not mentioned as a diagnostic tool in the latest Infectious Disease Society of America (IDSA) Lyme disease guidelines, despite a number of promising studies out of Columbia University.

Instead, the IDSA Lyme guidelines endorse an indirect antibody testing protocol that misses well over half the truly ill patients, and attributes ongoing Lyme disease symptoms to the “aches and pains of daily living.”

At the 2008 American College of Rheumatology (ACR) Scientific Meeting, the IDSA Lyme Guidelines foot soldiers were out in force, armed with more “evidence” that chronic Lyme disease is an imaginary disease.

Among the presenters was Leonard Sigal, M.D., R&D Director of Immunology at Bristol-Myer Squibb, and a contributor to both the 2000 and 2006 IDSA Lyme Guidelines. Calling ongoing Lyme symptoms, “Post Lyme Disease Syndrome” or PLDS, Sigal’s poster presentation said:

“After adequate antibiotic treatment, very rarely do patients continue to manifest objective evidence of ongoing infection, yet it has been estimated that over one third of Lyme disease patients report chronic physical, cognitive, and psychiatric symptoms or PLDS. There is no evidence that PLDS patients have ongoing infection with B. burgdorferi.”

“Close to 45% of patients with Lyme disease will manifest the chronic symptoms characteristic of PLDS.”

“Further, psychological factors such as depression and maladaptive belief systems could be significant risk factors for PLDS”

The problem with this study is the potential for bias. Isn’t it possible that these patients are suffering from treatment failure due to inadequate doses of antibiotics? Is Dr. Sigal really qualified to diagnosis these patients with a “maladaptive belief system,” when he is not a psychiatrist—he’s a rheumatologist? And what about his affiliation with Bristol-Myer Squibbs?

Though Sigal’s studies are cited 5 times in the 2006 IDSA Lyme guidelines, and he’s listed as a reviewer, nowhere is it mentioned that:

–Sigal’s employer, Bristol-Myers Squibb (BMS), sells two blockbuster drugs, Orencia ($129M in 2008), which treats rheumatoid arthritis and potentially Lupus, and Abilify ($606M in 2008) which treats depression. Many sufferers with late-stage, undertreated Lyme disease exhibit joint pain and depression, and are misdiagnosed with these syndromes of unknown cause.

–Both Orencia and Abilify have recently received approval for use on children, and Bristol-Myers Squibb recently donated $5 million to the Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital (RWJUH) to create three new clinical centers, including a new center for the treatment of Rheumatic Diseases in Children. As the former chief of the Rheumatology at RWJUH, Sigal is a volunteer lecturer at the RWJ medical school, and he publishes jointly with his former collegues at this medical school.

—Dr. Sigal is a reviewer of insurance case files for Prudential, Aetna, Anthem, MetLife, Metro Health, and BCBS. He typically earns over $500 per hour as an insurance expert witness in workers compensation cases that involve Lyme disease.

Could these commercial interests, which are not disclosed in the IDSA guidelines, create bias among front-line physicians, in diagnosing hypochondria, RA, or depression over chronic Lyme disease? Maybe. (For more on the influence of pharmaceutical companies on prestigious academic medical centers, see the “Harvard Medical School in Ethics Quandary” article in the New York Times.)

Because these types of conflicts muddy the evidence-based medicine waters, we applaud Connecticut Attorney General’s efforts to remove conflicted panelists from the new IDSA Lyme Guidelines writing committee.

Based on our research in the film, we tend to support this take on chronic Lyme disease, by Stricker et. al in Future Microbiology:

“…there is growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies. Persistent infection occurs in animal models and humans because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB. This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease. By contrast, the leading theory for persistent symptoms owing to ‘post-Lyme syndrome’, namely an autoimmune response triggered by the eradicated spirochetal infection, has not been supported by scientific evidence.”

For more on Chronic Lyme, see the video clip, “Patients Abandoned,” on the UNDER OUR SKIN site.