Under our Skin Blog Headlines

UNDER OUR SKIN premieres at Tribeca!

Andy Wilson — Thu, 01 May 2008 15:53:23 +0000

On April 23, 2008, we stumbled out of our darkened editing suite, squinting in the sunlight, and flew our Lyme disease documentary to its first public showing at the Tribeca Film Festival. UNDER OUR SKIN was one of the few documentaries selected from over 5,000 submissions. After four years of research, filming, editing, and interviewing literally hundreds of Lyme disease patients and experts, our team felt honored to witness the audience response to this important project – the first feature-length documentary on the Lyme disease epidemic. We received standing ovations at our screenings and many members of the audiences were moved to tears. Many special thanks to Aaron Dobbs, the Tribeca festival programmer who discovered our work-in-progress at Independent Film Week in New York six months earlier. He worked diligently to get our film noticed during the very competitive Tribeca selection process. Aaron added, “UNDER OUR SKIN was definitely one of the most talked-about films here...Wilson's careful study and expert storytelling provide a compelling, informative, and emotional experience.” And finally, thanks to our most ardent Tribeca fans, whose votes helped us become a Cadillac Audience Award finalist, receiving 7th place out of 121 films.

Film Junkie reports: UNDER OUR SKIN is the perfect date movie

Andy Wilson — Mon, 05 May 2008 23:11:25 +0000

Randy Astle, also know as the “World’s Biggest Film Junkie,” bestowed UNDER OUR SKIN with the honorary title of “The Perfect Date Movie,” saying, “it was informative, touching, and even occasionally mushy enough for a good old-fashioned date.” We appreciate that Randy recognized our efforts to weave together dramatic and interesting stories about the plight of Lyme patients, in addition to educating viewers about the disease and its politics. “Under Our Skin touched on universal health care in passing but kept its focus more on individual stories: doctors getting their licenses revoked, patients finding relief through “unproven” methods … I also quite like it when a film has an agenda and fits within a greater social cause. …So I’m glad the Tribeca Film Festival saw fit to include this film in their lineup, and my wife saw fit to use our sole date night in a long while to come see it.” We might also suggest that on the way home from watching this perfect date movie, you play Brad Paisley’s country western song, “I’d Like to Check You for Ticks.” Who knows, you might get lucky… and not find any ticks.

Amy Tan talks about Lyme disease at Tribeca

Andy Wilson — Thu, 08 May 2008 15:50:06 +0000

As one of the “most provocative films” at Tribeca Film Festival, UNDER OUR SKIN was featured in a “Behind the Screens” panel discussion at the Director’s Guild Theater in Midtown Manhattan. At this sold-out event, Robert Bazell, Chief Health and Science Correspondent for NBC News, moderated a discussion with Andy Abrahams Wilson, the film’s director; Amy Tan, the best-selling author and former Lyme patient; and Dr. Richard Horowitz, a Lyme expert featured in our film. During the course of researching UNDER OUR SKIN, we discovered many celebrities with Lyme disease, but only Amy Tan had the courage to speak on camera about her struggles. In her book, “The Opposite of Fate,” she talks about her harrowing symptoms, her string of misdiagnoses, and her long road to recovery. In “Fate” she asks the question that most Lyme patients ask themselves along the way – Why did I get this horrible disease? Is it fate or a curse? What can I do to help others avoid this fate? In the case of Amy, her actions speak louder than words. Kudos to Amy for all that she’s done for Lyme research and the Lyme patient community. For more details on this event, read AM Peters’ excellent coverage on the Film Panel Notetaker Blog.

Launch Party at the NY Times Center

Andy Wilson — Thu, 15 May 2008 15:47:52 +0000

To celebrate the completion of UNDER OUR SKIN, Turn the Corner Foundation, our official outreach partner, sponsored a reception and screening at the spectacular NY Times Center, designed by architect Renzo Piano. During the four years it took to create this film, we shot over 350 hours of footage in 15 states, from Alaska to California, from Nevada to Iowa, and from New England to Florida. Along the way, we made a lot of friends, and it felt as if they there were all there in the theater that night. Following the screening, several of the Lyme patients and physicians featured in our film came up on stage to field questions. The audience honored them with a standing ovation. We all appreciate their courage in sharing their personal struggles on the big screen, in order to bring this epidemic into the light. One of the most memorable moments of the evening came when a crying teenage girl stood up and said, “I just started treatment, and sometimes I don’t know how I’ll survive it. Thank you for giving us this film and for giving us hope.”

Lyme Film is Audience Award Runner-Up at Berkshire Festival

Andy Wilson — Fri, 23 May 2008 03:24:52 +0000

UNDER OUR SKIN was honored with the second place audience award at the Berkshire International Film Festival (BIFF), held in Great Barrington, Massachusetts. Kudos to the festival organizers who, in selecting our film from over 300 submissions, are helping to spread awareness about Lyme disease in Massachusetts. Between 2006 and 2007, CDC-reported that Lyme cases jumped an alarming 77% in Massachusetts. If you’d like to read more, the scope of the Massachusetts problem was summarized to Senator Edward Kennedy in a September 2008 briefing authored by the Lyme Disease Association.

DC area catches Lyme fever

Andy Wilson — Thu, 29 May 2008 15:46:05 +0000

We were thrilled to hear about our second big festival acceptance – SilverDocs International, one of the biggest documentary-only film festivals. This is an important festival because all the major broadcasters and distributors shopping for nonfiction films attend. And it’s the home of the Hope to Heal Lyme Conference, the event where we interviewed many of the Lyme sufferers in the film. A few days after the SilverDocs box office opened, Sky Sitney, the festival organizer, told us, “I can’t believe how many calls we’re getting about your film. UNDER OUR SKIN is number one in ticket sales so far.” While our first screening sold out quickly, we were able to free up some reserved festival passholder tickets the other nights, in order to accommodate the demand. Sky Sitney later said this about UNDER OUR SKIN: “A very important and timely work, not to mention an extraordinarily cinematic piece.”

Mandy & Andy’s excellent press tour

Andy Wilson — Thu, 19 Jun 2008 15:43:37 +0000

Excuse me if I rave for a few moments about our new film publicist, Marc Silverstein of On the Marc Media. If you’re a “foodie,” you may know him as the host of “Make My Dinner” on Discovery Channel. But to us, he’s a Public Relations Top Chef, whipping up UNDER OUR SKIN press coverage on six network television interviews, a syndicated radio show spot, and in the Washington Post during the SilverDocs Film Festival. I can’t emphasize enough how exceptional it is to get this much media attention during a festival featuring 100 films, covering a disease that was previously thought to be “easy to treat, easy to cure.” Not to mention that this controversy was previously regarded as “old news” by mainstream media. Thank you Marc for ushering our film into the limelight and helping the Lyme issue reach a tipping point of awareness. You can watch these news segments featuring director Andy Abrahams Wilson and our Leading Lyme Lady, Mandy, on our new UOS YouTube webpage.

Lyme film featured on Good Morning America

Andy Wilson — Fri, 04 Jul 2008 09:52:38 +0000

As a warning to all those Fourth of July picnic goers, ABC’s Good Morning America aired a five-minute segment on UNDER OUR SKIN, which features clips of patients with late stage Lyme disease. This spot also succinctly describes the “heated medical debate” surrounding diagnosis and treatment of Lyme disease, mentioning the Attorney General of Connecticut’s investigation into the Infectious Diseases Society of America’s Lyme guidelines. One important correction to this ABC story: According to a recent article in Discover Magazine, the scientific jury is still out on the “one-dose of Doxycycline Lyme cure” mentioned by Dr. Marie Savard, GMA Medical Contributor. Immunologist Nordin Zeidner, chief of the CDC’s Vector-Host Laboratory in Colorado, says that this protocol only prevented Lyme disease 20 to 30 percent of the time in his mouse studies.

CNN’s Lyme-film story is the “Most Emailed”

Andy Wilson — Thu, 10 Jul 2008 15:38:05 +0000

At the SilverDocs Festival, CNN producer Ronnie Berke interviewed the UNDER OUR SKIN team for several hours, then put together a well-crafted segment on Lyme disease that ended up being the “Most Emailed” CNN story for several days. We felt this segment was a watershed moment in mainstream media coverage of the disease, because it went beyond the medical dogma and hit on the important things that anyone who thinks that they might have Lyme disease needs to know. **According to the CDC’s own experts, Lyme cases are undercounted six to 12-fold, and there could be over 200,000 new US Lyme cases a year, not the 20,000 that the CDC publicizes on their Lyme webpage. This is not a rare disease. **Standard Lyme blood tests are very unreliable, missing 75% of the positive cases, according to a 2005 Johns Hopkins study. You can test negative for Lyme, and actually have it. Diagnosis should be based both on symptoms and tests, taking into account testing error. **To recover from Lyme disease, some patients need more than the 2 to 4 weeks of antibiotics recommended by the Infectious Diseases Society of America (IDSA). Of course, we’ll know our film has succeeded once the media no longer feels obligated to frame every mention of Lyme disease with the qualifier, “it’s controversial.” Before http://www.climatecrisis.net/ came out, the evidence for global warming was “controversial.” Now it’s fact. There’s ample evidence that global warming AND Lyme disease are big problems. And that global warming possibly may be contributing to the proliferation of infected ticks. So it’s time to quit arguing about “the controversy” and start looking for solutions.

SnagFilms makes Lyme film “viral”

Andy Wilson — Fri, 22 Aug 2008 06:28:31 +0000

SnagFilms has selected UNDER OUR SKIN as a "Top Pick" on its website. SnagFilms is an innovative new “viral marketing” website that makes it easy for you to watch a 13-minute film clip of our film and easily share it with friends and family. Our SnagFilm page also makes it easy to make a donation to our Lyme disease outreach partner, Turn the Corner Foundation, or to purchase the DVD. To take advantage of this new service:

Go to our Snag page
Click on the Snag button.
Forward our clip to friends and family.
Or embed our clip on your blog, Facebook page, or website.

It’s all free and yet another way to spread the word about Lyme disease. Categories: Awards, Patient stories

Capacity crowds at Martha's Vineyard screenings

Andy Wilson — Mon, 15 Sep 2008 10:21:34 +0000

As an official selection of the Martha’s Vineyard Film Festival, UNDER OUR SKIN played to capacity crowds in Vineyard Haven and Chilmark. One longtime friend of the festival included Jane Alexander, the actress and former director of the National Endowment for the Arts (NEA). She called UNDER OUR SKIN "an unforgettable documentary about the epidemic of Lyme disease and the medical establishment's shameful response to the crisis. This is a moving and beautifully structured film; truly memorable.”   For more coverage of the film at MV Film Festival see:

UNDER OUR SKIN wins a Freddie Award

Andy Wilson — Fri, 19 Sep 2008 14:52:09 +0000

Under Our Skin, a documentary about the debilitating and often heartbreaking effects of Lyme disease, has just won a prestigious “Freddie Award". The honor names the doc "Best Film about Infectious Diseases". A production of Open Eye Pictures of Sausalito, CA and filmmaker Andy Abrahams Wilson, Under Our Skin investigates the human, medical and political dimensions of Lyme disease. The film casts one of the first media spotlights on the emerging epidemic that is destroying countless lives. Lyme disease is among the most misunderstood and controversial illnesses in recent medical history. The FREDDIES, sometimes referred to as the "Oscars of Healthcare Films," are the preeminent media awards in the international health and medical fields. Each year, the competition attracts hundreds of submissions from around the world. Filmmakers and producers compete in 36 categories for the FREDDIE, the bronze statuette named in honor of the competition's founder, Dr. Fred Gottlieb. Judging is conducted by world-renowned medical and production professionals from across the United States. We're honored to be recognized by the FREDDIE awards, says filmmaker Andy Abrahams Wilson. "This honor allows us to again focus needed attention on the hundreds of people who shared their difficult stories of Lyme disease -- as well as the millions more who are fighting for treatment, or sadly, have lost loved ones. This FREDDIE award honors their courageous battles." Prior to the FREDDIE, Under Our Skin was an Audience Choice Award finalist at the Tribeca Film Festival, where it had its world premiere. In addition, the film has received major news coverage from ABC's Good Morning America, The Washington Post, and Sirius XM radio's Oprah and Friends Channel with Dr. Oz, among many others.

West Coast Premiere at the Mill Valley Film Festival

Andy Wilson — Tue, 23 Sep 2008 14:28:53 +0000

After packed screenings at film festivals on the East Coast, including Tribeca, Silverdocs, Maine, Rhode Island, Martha's Vineyard, Boston, and Berkshires, UOS will have its West Coast premiere at the prestigious Mill Valley Film Festival on Saturday, October 11th at 6:45PM. A second screening will be held on Sunday October 12th at 4PM. These tickets will sell out quickly, so be sure to purchase your tickets early.

Historic screening on Capitol Hill a success

Andy Wilson — Thu, 25 Sep 2008 09:46:22 +0000

An excerpt from UNDER OUR SKIN played to a rapt and standing-room only crowd today at the Russell Senate Building on Capitol Hill. A historic moment for the Lyme community, this briefing was sponsored by the National Capital Lyme Disease Association, co-sponsored by Turn The Corner Foundation (the film's outreach partner) and signed-on by the offices of Senators Dodd and Lieberman. In addition to the film and the film's director Andy Abrahams Wilson, speakers included Pam Weintraub, author of "Cure Unknown" and a few DC area Lyme-literate physicians. Democratic Majority Leader Steny Hoyer showed up, along with many congressional staffers. Press was abundant, and attendees agreed this was an important moment in the struggle to bring Lyme disease out of obscurity and uncover an epidemic that is silently taking its toll across the country. Legislators were invited to a full screening of the film at the Avalon Theater in DC the following day (which, we are told, has sold out its 450 seats!). Stay tuned for more reverberations coming from this important legislative briefing. Click here for more press information.

Director interviewed by FOX News

Andy Wilson — Fri, 26 Sep 2008 01:49:22 +0000

While Bill O'Reilly and the FOX News gang were called to DC to critique the nation's financial crisis, UOS director Andy Abrahams Wilson was stirring up the heat on Lyme disease in a studio next door. The show, highlighting the film and Mandy's story, is set to be broadcast nationally in the next few days. The FOX News producer said about the film "Not since Michael Moore has a documentary caused such a stir across America!" Andy reported that during his trip to the FOX News bureau he bumped into person after person who had a "friend" with a serious case of Lyme disease: his chatty driver who dropped him off at FOX, the receptionist there, and even the make-up artist! Lyme disease is everywhere and so, soon, will be the film that tells its untold story.

Turn The Corner Foundation to honor film’s director

Andy Wilson — Sat, 27 Sep 2008 14:28:54 +0000

Andy Abrahams Wilson will be honored with a "Vision of Hope Award" at Turn The Corner Foundation's 2008 Gala Event in NYC on November 13th. Turn The Corner is the country's leading Lyme disease advocacy foundation, dedicated to research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases. Turn The Corner is the official outreach partner of UNDER OUR SKIN, and we are indebted to them for their undying distribution support. Please in turn support the important work of Turn The Corner Foundation--and help turn the corner on Lyme disease once and for all. Bernard D. Raxlen, MD, a Lyme-literate physician, will also be honored at this event. Chairpersons are Karen Kissling, Kris Newby, Steven C. Rodger, Leo J. Shea III, Ph.D. and Alyssa Sokoloff. Award-winning comedy writer Alan Zweibel will also attend the gala. To learn more about Turn The Corner's Gala Event, click here.

East Coast film blitz

Andy Wilson — Sun, 28 Sep 2008 11:28:57 +0000

A day after showing excerpts from UNDER OUR SKIN at the Lyme briefing on Capitol Hill, Andy presented the film at the historic Avalon Theater in DC. The event was organized by the National Capital Lyme Disease Association partly as a way for legislators to see the full version of the film after the congressional briefing. We don't know why they found it more important that night to work to bail out Wall Street and avoid plunging the country into a depression, but at least they got free DVDs delivered to their offices by event volunteers. The next day, Andy took off for the Camden International Documentary Film Festival where the film sold out the 400-seat Strand Theater in Rockland, Maine. Andy also had a meeting there with a distribution company, at which was discussed plans to release the film in theaters nationwide sometime early next year! More on that later. And this breaking news: We just heard from a friend in New Jersey that the FOX News interview with Andy was just broadcast in the NY Tri-State area and is planned to show soon nationally. More on this later, too. Now it's off to Raleigh, North Carolina for a special screening sponsored by the North Carolina Lyme Disease Foundation. Yes, the frequent flyer miles are adding up. But lets hope those infamous flying ticks aren't on board these flights!

Raising Arizona Lyme awareness

Andy Wilson — Sat, 04 Oct 2008 04:15:05 +0000

The Fullness of Life Foundation and the Envita Medical Clinic of Scottsdale, AZ, hosted a full-house screening of UNDER OUR SKIN, as part of their mission to provide education and awareness of chronic diseases such as Lyme disease. After the screening, three local physicians and the film’s senior producer, Kris Newby, fielded audience questions for nearly an hour. The Envita Clinic, which takes an integrated approach to tackling chronic diseases, has an educational animation explaining how the Lyme bacteria can cause autoimmune conditions if left untreated. You can watch this animation here. For more information on how you can host a screening in your town, contact Open Eye Pictures.

UNDER OUR SKIN wins a Chris Award

Andy Wilson — Tue, 07 Oct 2008 01:38:39 +0000

The jury of the Columbus International Film and Video Festival has just named UNDER OUR SKIN a recipient of “The Chris Award,” which “honors the work of makers whose creations of vision, beauty and power help us understand the complexities of our world by using their committed artistry to touch our minds and hearts.” The Chris Award is one of the oldest and most prestigious documentary, educational, business and informational media competitions in the U.S. The Chris Awards will be presented at the 56th annual Awards Ceremony on Saturday, November 15, 2008 at the Columbus College of Art & Design. The main week of film screenings for the festival will be held in Columbus, OH, from November 11-16, 2008. To purchase tickets for the Columbus screenings, visit the Columbus International Film and Video Festival website later this month.

Reported Lyme cases jump 37% in 2007

Andy Wilson — Fri, 10 Oct 2008 08:30:05 +0000

According to new CDC data, 27,444 new cases of Lyme disease were reported by state health departments in 2007, representing an alarming increase of 37% over the previous year’s tally. It’s important to note that the actual number of new Lyme cases in the U.S. could possibly exceed 300,000 due to inherent flaws in the Centers for Disease Control’s passive case reporting system. [1] [2] UNDER OUR SKIN is a powerful and often terrifying documentary that explains the science and politics of Lyme disease, following the personal stories of Lyme patients and their physicians from all across America. Viewers witness the rift between Lyme specialists who are vocal about this growing healthcare nightmare and the Lyme denialists, who are financially rewarded for under-treating the disease and threatening Lyme specialists who prescribe long-term antibiotics to these suffering patients. While exposing our broken healthcare and disease-reporting system, the film dramatically illustrates the financial burdens placed on individuals and our society when politics and fear trump science, crippling our ability to respond to emerging epidemics. Top Ten Lyme Disease States (2007) New York: 4,165 cases Pennsylvania: 3,994 cases (23% increase over 2006) New Jersey: 3,134 cases (29% increase over 2006) Connecticut: 3,058 cases (71% increase over 2006) Massachusetts: 2,988 cases (109% increase over 2006) Maryland: 2,579 cases (106% increase over 2006) Wisconsin: 1,814 cases (24% increase over 2006) Minnesota: 1,238 cases (35% increase over 2006) Virginia: 959 cases (169% increase over 2006) New Hampshire: 896 cases (45% increase over 2006) Other Large Increases in Lyme Disease (2006-2007) District of Columbia: 87% increase (116 cases) North Carolina: 71% increase (53 cases) South Carolina: 55% increase (31 cases) Delaware: 48% increase (715 reported cases) Maine: 57% increase (529 reported cases) [1] CDC MMWR Report 2004 53(17);365-369. “cases are “under-reported by 6- to 12-fold” http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm [2] CDC Lyme Cases by State. 1993-2007 http://www.cdc.gov/ncidod/dvbid/lyme/ld_rptdLymeCasesbyState.htm http://www.cdc.gov/ncidod/dvbid/LYME/ld_UpClimbLymeDis.htm

UNDER OUR SKIN fires things up at its West Coast premiere

Andy Wilson — Tue, 14 Oct 2008 22:37:30 +0000

What better place was there to have our West Coast premiere than in a premiere film festival in our own back yard? It was a celebratory gathering at the 375-seat Sequoia Theater on October 11th, home to the prestigious Mill Valley Film Festival, just a few miles away from Open Eye Pictures' studios in Sausalito. Every seat was filled--with crew, friends of the crew, friends of the film, and the general public. Sold out weeks in advance, many had waited for rush tickets for up to an hour. Surely, the pre-festival press drew many in the crowd. San Francisco Fox affiliate KTVU aired an excellent piece on the film last month, and so did NBC Bay Area. San Francisco Magazine called the film "provocative...causing a sensation everywhere it screens." And for the film's bold tackling of the health care debacle, its headlines read: "Move over Michael Moore!" During the lively post-screening Q&A with Director Andy Abrahams Wilson, Editor Eva Brzeski, Senior Producer Kris Newby and film subjects Dana Walsh and Jordan Fisher Smith, CALDA 's president Phylis Mervine presented a Community Service Award to Open Eye Pictures for making the film. The following day, after another sold-out screening at the Rafael Theater in San Rafael, Andy, Eva, Dana and her husband Tim gathered on the Hornblower Cruise ship for the closing night party of the festival. It was a gala event on San Francisco Bay honoring actress Alfre Woodard and with the unexpected, surreal backdrop of a raging forest fire that was engulfing Angel Island as the cruise began. It was a reminder, even as the festival celebrated "There's no mistaking great film," of the horror and beauty of nature. As the fire scarred the earth just beyond the boat's decks, it was impossible not to be awed by the spectacle and to recognize our deep connectedness to the skin of the earth--an important reminder as we regard the Lyme epidemic. How we touch the earth touches us. Next stop: Abu Dhabi for the Middle East Film Festival where UNDER OUR SKIN will be shown as part of a section of "Environmental Films." Stay tuned!

Turn The Corner Foundation's gala event just around the corner

Andy Wilson — Sat, 18 Oct 2008 15:24:38 +0000

On November 13th in New York City Turn the Corner Foundation will host its annual fundraising gala, "Unmask a Cure." Last year the organization--which featured a performance by musician and Lyme activist Darryl Hall--raised over $1 million for Lyme disease research and education. This year TTC hopes to top this amount. The leading Lyme research and advocacy organization in the U.S., TTC has joined as UNDER OUR SKIN's official outreach partner, helping get the film into communities across the country and serving as an educational resource for these communities. The film's director, Andy Abrahams Wilson, will be honored with TTC's "Vision of Hope Award," and the film's Kris Newby and Jordan Fisher Smith will also be honored. Please support Turn The Corner's efforts by registering for the event today, or making a contribution if you're unable to attend. Proceeds from the event will be used in part to support the film's planned theatrical release across the U.S. in March 2009!

Screening in Georgia prompts meeting with US Senator

Andy Wilson — Sat, 18 Oct 2008 15:55:46 +0000

We want to hear how UNDER OUR SKIN is making a difference in your community. Please email us or sign our guestbook with your stories. Here's a letter we received from a community screening organizer in Georgia. In this case, not only did UOS make a difference in the local community, but it spurred a meeting with Georgia's US Senator Johnny Isakson. Read on: Hi Open Eye Pictures, I just want you to know, I set up a meeting yesterday with U.S. Senator Johnny Isakson's office reps here in Georgia to discuss Lyme Disease at the end of this month! I emailed them a few weeks ago and invited them to the UOS screening on Capitol Hill. They didn't make it, I guess. Then I emailed again and told them about the 18 Lyme cases I have found within a 15-20 mile radius of my house here in Georgia and sent them links to all the research showing them that Georgia was 4th in the nation in highest Lyme cases in 1989 when they actually LOOKED for the disease here. And guess what?? They called back! They want to see the film and discuss this situation with me! Our first meeting is at the end of this month, then they said they'll review everything and we'll meet again. I'm collecting Georgia Lyme stories to place in a book to present to them so they'll be able to read first-hand about the struggles we face. I'm THRILLED and just want to let you know the progress we're making here. UNDER OUR SKIN is opening doors for discussion and debate! I have already held 6 screenings of the film and have two more at local libraries next week. And now I have a lady north of Atlanta who is helping me to set up screening venues up in that area, too. As an aside, my sister and her daughter saw the film. My niece has always wanted to be an epidemiologist. But in the last several years she somehow gave up that dream. After seeing UOS she is once again inspired to go into this field and is showing the film to everyone she can. Did you ever dream you all would effect so many people in so many positive ways? Blessings to ALL of you, LS

National FOX News features UNDER OUR SKIN

Andy Wilson — Sun, 19 Oct 2008 14:33:56 +0000

Titling its news package on UNDER OUR SKIN as an "Explosive Documentary," FOX took the unprecedented move in mainstream media to highlight the film as a news item without the usual debate about whether or not Lyme disease is a chronic condition. This signals a major turning point in the Lyme awareness struggle, in which the issue is not simply posed as a point/counter-point or pro/con issue. Up until now, the naysayers have always shared equal air time. In fact, reporter Douglas Kennedy goes as far as saying that the film is "trying to get under the skin of ignorant doctors." The two and a half minute segment features film excerpts and an interview with the film's director. View the news clip now online and be sure to rate it with five stars!

Film producer interviewed by NPR San Francisco affiliate

Andy Wilson — Thu, 23 Oct 2008 01:28:38 +0000

Last week I was interviewed by KQED Forum host Dave Iverson on the physiological effects of Lyme disease, and on the controversy surrounding its diagnosis and treatment. Joining me was Pam Weintraub, author of the book, "Cure Unknown: Inside the Lyme Epidemic." During this hour-long radio show, we were able to discuss these important points about Lyme disease: #NAME? --There are over 100 strains of Lyme disease bacteria, and the standard tests don’t detect all of them, resulting in the misdiagnosis of many Lyme sufferers. #NAME? Pam discussed one recent study that could explain why some patients relapse after a short course of antibiotics (published by UC Davis researcher Stephen Barthold). In this study, Dr. Barthold found that Lyme bacteria exposed to antibiotics often go into a dormant state inside tissue, then once antibiotics are halted, the organisms convert back into motile Lyme spirochetes. She also summarized the flaws in the NEJM “Klempner Study,” which is often used by insurance companies to deny long-term antibiotic treatments to chronic Lyme patients. Most important, this study was flawed in its selection of test subjects: Seventy-five percent of patients enrolled had failed treatment for early Lyme disease, so these very sick patients weren’t representative of a typical response rate. KQED Forum also featured a surprise caller, Eugene Shapiro, MD, a Yale pediatrician and one of the 14 authors of the contested IDSA Lyme diagnosis and treatment guidelines. We were delighted that Dr. Shapiro had a chance to weigh in on the Lyme controversy, but we were disappointed that he failed to mention that he supplements his university salary by reviewing Lyme patient disabilities claims for Metropolitan Life. He has also testified against two Lyme-literate physicians who treat chronic Lyme patients with long-term antibiotics. Both Pam and I emphasized the need for more Lyme disease research, and I heartily agreed when she said, “We’re going to have to turn our backs on the fight and look at the science to get down to the bottom of this.” You can listen to an archive of this radio show on the KQED website. We also encourage you to weigh in on this issue by sending comments to forum@kqed.org.

Turn The Corner initiatives give Lyme patients hope

Andy Wilson — Fri, 31 Oct 2008 00:30:46 +0000

As our official outreach partner, Turn The Corner Foundation is helping to underwrite UNDER OUR SKIN’s nationwide theatrical release, which will begin in March 2009. This launch will also be accompanied by a publicity campaign that will further the awareness of the physical, emotional, and social effects of Lyme disease. As you plan your year-end giving, be aware that Turn the Corner organizes many other important Lyme disease initiatives that fund basic Lyme research, train more Lyme-literate physicians, foster awareness, and last but not least, give Lyme patients hope. Please support Turn The Corner’s efforts by registering for the TTC Celebrity Gala that will be held November 13, 2008 in NYC's Gotham Hall (shown above), or by making a contribution if you’re unable to attend. Below is a summary of these initiatives. 2008 TTC Grant Recipients These innovative research projects will have a monumental impact on improving the treatment and diagnosis of Lyme disease. Cheryl Koopman, Ph.D. Stanford Univeristy This research project is focused on treatment studies for patients who have a clinical diagnosis of Lyme disease but have tested negative using standard criteria. These types of patients are often excluded from Lyme disease research. This study will determine if these types of patients require treatment approaches different from today's conventions. This research is critical because Lyme disease is notorious for false negatives, resulting in patients that are told they do not need treatment. In reality, these patients are sick and deserve a treatment approach tailored to their needs. Raphael B. Stricker, M.D., San Francisco, CA This study focuses on reviewing the effectiveness of IV antibiotic treatment for Lyme disease. In studying various doses given at different intervals, doctors will be able to determine the best course of treatment for patients requiring antibiotics. This study is one of the first analyses of the safety and efficacy of true long-term IV antibiotic therapy for neurologic Lyme disease. Eva Sapi, Ph.D.. West Haven, CT One study aims to identify whether or not deer ticks carry nematodes (microscopic worms), in order to develop more focused treatment for patients infected by tick bites. The second study explores whether the bacteria that causes Borrelia burgdorferi, the bacterial agent of Lyme disease, is capable of forming a complex covering called biofilm and if this biofilm increases its resistance to antibiotic treatment. Dr. Alan MacDonald, Smithtown, NY This study will explore whether Borrelia burgdorferi infections can cause neurodegenerative diseases, such as Alzheimer's disease. It will also seek to discover the role of biofilms in Borrelia infections. Dr. Joseph J. Burrascano Jr.'s Lyme and Associated Diseases Registry™ Dr. Burrascano, a member of TTC's Medical Advisory Board, has been compiling patient data since 2002 on the diagnosis and treatment of Lyme disease. Results from this critical research will be a key element for all treating physicians, and this information will be published and disseminated worldwide. Physicians Training Program This groundbreaking program provides medical practitioners with the opportunity to study with a Lyme-literate health care professional to learn how to recognize and treat Lyme disease successfully. In about two weeks, trainees become Lyme-literate through watching mentoring doctors in action with patients, reviewing different cases, and learning their individual approaches to diagnosis and treatment. These professionals bring this skill set back to their community in order to better care for their patients. Fifty-five doctors have already been trained through this program, helping thousands of people with Lyme disease. Create Footprints This national program allows volunteers across the country to plan a walk to raise funds for Lyme disease research and initiatives through Turn the Corner Foundation. You can become an organizer of an event and raise money in your own neighborhood. Create Footprints gives you everything you need, including forms and step-by-step instructions, to execute a successful fundraising walk no matter where you live.

Lyme community loses a hero and friend

Andy Wilson — Thu, 06 Nov 2008 03:41:40 +0000

Leslie Rae Wermers, 7/7/1967 - 11/2/2008 The Lyme community has lost an important hero and friend--and so did I. Leslie Wermers, 41, died from heart failure in her sleep on November 2nd. It's hard to imagine Leslie's heart giving out, because for anyone who knew her she was all heart. A dear friend to so many and a tireless worker on behalf of the Minnesota and national Lyme communities, Leslie gave everything she had to help others who were sick. And everything she had was an abundant reserve of love and support–even as her own health waned. The first time I heard from Leslie was in an email several years ago during production of UNDER OUR SKIN. She said that watching the film trailer changed her life: You see, Andy, I had no will to live. I was so sick, with no answers and just wanted it to end. That was until I saw the trailer. You have given me so much joy....Your documentary saved my life. Since then, Leslie became our greatest film fan and an activist whose sole goal was to help others avoid a fate she couldn't avoid herself. I finally met Leslie at the Iowa Lyme memorial which we covered for our film. Though she herself drove more than four hours to be there, she gave our crew a hero's welcome. Here is a video compilation of our interview with Leslie. Her words are humbling and prophetic. And here is Leslie as she appears in an excerpt from UNDER OUR SKIN. Later, Leslie and her sister Tracie (who also has Lyme and worked with Leslie on behalf of Lyme sufferers) sent us a picture of their version of the film's widely-used image of Mandy in the pool. Leslie wrote: "Tracie and I thought that this photo represents our passion to continue to help you finish this project, that will save so many lives." Beyond her mission of service, Leslie's sense of humor and gusto were legendary. Over the next few years hers was a familiar voice in our office--calling regularly to tell us how much she appreciated our work, how we were her "angels," and how much she loved us. But her love didn't stop here. It was extended to so many people nationwide who were sick and struggling in solitude with the disease. Leslie and Tracie founded the patients' advocacy group Minnesota Lymefighters Advocacy. Suffering from Lyme induced insomnia, she had late-night conversations with people across the country--many of whom she had never met--offering them words of encouragement, hope and affection. It is a testament to her profound affect on so many and the deep emptiness she leaves that so many have been moved by her passing, never having even met her. Leslie's death leaves a deep hole in my heart and in so many others, including her loving family and partner, Paula. Her indomitable spirit and passion for life were equaled only by her anger at the injustices wrought by Lyme ignorance and her dedication to help heal. May this be a lesson--Leslie's legacy--for all of us. Andy Abrahams Wilson Producer/Director UNDER OUR SKIN Leslie's Obituary Leslie Rae Wermers Remembered on YouTube

Film wins top award at documentary film festival

Andy Wilson — Sun, 09 Nov 2008 03:09:14 +0000

UNDER OUR SKIN played to sold out crowds last month at the fourth annual Camden International Film Festival, and shared the Harrell Award for Best Documentary, along with Scott Hamilton Kennedy’s THE GARDEN. The Harrell Award is sponsored by Camden resident Jennifer Watt Harrell, a Scots-American who has been an ardent fan of the British and American documentary genre for nearly half a century. Awards were chosen by a special jury of selected industry professionals and filmmakers and by CIFF audiences. This year’s festival smashed previous records, with an estimated 3,500 tickets being sold to enthusiastic Maine filmgoers throughout the course of the weekend.

Film director receives award, recognizes Lyme community

Andy Wilson — Tue, 18 Nov 2008 04:40:07 +0000

On November 13th, Turn The Corner Foundation hosted its annual gala fundraising event at Gotham Hall in New York City. The Vision of Hope Award was presented to UNDER OUR SKIN Director Andy Abrahams Wilson for his work on the film. In addition, the film's Senior Producer Kris Newby served as one of the event chairs, and Jordan Fisher Smith was also honored with a Courage Award at the event. Excerpts from the film were shown on a large screen to the rapt audience, and several subjects from the film were also in attendance, including Mandy, Elise, Dr. Jemsek, and Dr. Raxlen, who was honored with a Humanitarian Award. It was a successful and celebratory evening, with funds raised going to Turn The Corner's several Lyme initiatives, including support for the theatrical release of the film. Check back here soon to see photos from the event. Below is the text of Andy's speech as he accepted his award. It is a message to the entire Lyme community: "What an honor to be here tonight to receive the Vision of Hope Award! Words that are dear to me: vision and hope—and award! This has been an incredible journey for me as a filmmaker and individual these past several years at the helm of UNDER OUR SKIN. I started the project with little more than compassion and curiosity—and perhaps courage (or craziness), given I had no funding at all at the time. But at the onset there was no great vision of hope—and I’m glad. Because what I went through was nothing less than the transformation of my soul. It was not just an ideal. Hope as an abstract. Or a cause to champion. An axe to grind. My being was changed irrevocably by what I witnessed: suffering, injustice, and deafening silence. And above all: the courage of so many to persevere, to fight for life amidst the eclipse of light: the pain, fear, loneliness, and the mantra 'It’s all in your head.' I was changed by the responsibility to do justice to the people who entrusted me with the only sure thing that remained amidst a disease which robbed them of everything they knew: their story. We’ve been thrown together by shared, lived stories about the adversity of a disease, and its denial. What an unlikely reason to gather. And yet what also draws us together is the knowledge that together we can make a difference—not just for ourselves, but for others behind us, or next to us, who don’t have a voice, have less resources, or simply have given up. Our vision of hope is that together we can turn the corner. In every struggle there’s a point where the vision of a few becomes universal, where what’s seen as primarily a community’s concern enters public consciousness and shifts public perception. We’ve seen it with civil rights, women’s rights, AIDS, global warming, and soon gay rights: The point where the cause is championed by the many, not just the few who would seem to benefit directly. Where it is understood that the well being of others affects our own well being, and the threat to others is a direct threat to ourselves. That we are linked. We are linked. That is where we stand today, linked—at the verge of the tipping point. We cannot give up holding the vision or maintaining the hope, or giving everything we can: our money, our sweat, our love. Because the shift is not assured. But it is near. So tonight I feel proud and humbled to be recognized for vision of hope in the Lyme disease struggle. For what I have envisioned and imagined is simply a reflection of what and whom I have seen and come to know. I owe this award to you, some of you here: Mandy and Jordan and Kris and Kathy and Elise. And some of you missed: Alan, and Leslie—a fallen hero. I thank ALL the UNDER OUR SKIN film subjects who shared their stories in the vision of helping and healing, even as their own hope diminished. I thank Eva and all the UNDER OUR SKIN crew who shared their great talents and care. I thank you, Turn The Corner Foundation, for your own vision of hope, and for entrusting our film and your support of it with this vision. And I thank all of you here tonight who embody compassion, curiosity--and courage, who envision change, and have hope and faith that the tipping point really is around the corner."

Film wins two Freddie Awards--the "Oscars" of health care

Andy Wilson — Thu, 20 Nov 2008 08:52:44 +0000

On November 14th, UNDER OUR SKIN received two prestigious awards at the annual Freddie Awards, sponsored by the International Health and Medical Media Awards and considered to be the "Oscars of health care films." At the black-tie event in Philadelphia's historic Crystal Tea Room, film Producer/Director Andy Abrahams Wilson accepted the award for Best Production in the category of Infectious Diseases. In his acceptance speech, he noted the importance of this validation by the medical establishment, and thanked the judges for helping raise the visibility of chronic Lyme disease. Former CNN health reporter and author Daryn Kagan, the event MC, also presented UNDER OUR SKIN with one of the top overall awards, the Robert E. Wise Award for Outstanding Cinematography, chosen from all the 32 category winners. In addition to these honors, another Open Eye Pictures production, THE CAREGIVERS, was recognized as a Finalist in the category of Caregiving. Also in attendance was Senior Producer Kris Newby, who made sure a DVD copy of UNDER OUR SKIN was placed in the hands of Anthony Fauci, MD, Director of the NIH's National Institute of Allergy and Infectious Diseases. Dr. Fauci was honored at the event with a Lifetime Achievement Award for his pioneering work over the past 20 years to bring awareness and research to the AIDS crisis. As head of Infectious Diseases at the NIH, he has the power also to change the course of the Lyme disease crisis. Dr. Fauci posed for a photograph with Kris and Andy, and offered his respective congratulations to the team. Open Eye Pictures is proud of this endorsement and expects it will give UNDER OUR SKIN important credibility in the medical establishment and the public at large.

Interview with Dr. Oz, Oprah & Friends, airs Nov. 26th

Andy Wilson — Sat, 22 Nov 2008 13:45:46 +0000

Last month, I was interviewed by Dr. Mehmet Oz from Oprah & Friends' Network, along with Washington, DC medical correspondent, Kathy Fowler. The interview is now scheduled to broadcast nationally on SiriusXM radio on Wednesday, November 26th--the busiest travel day of the year. So millions of Americans, stuck in Thanksgiving holiday traffic, will have the benefit of raising their awareness about Lyme disease--a great cause for which to be thankful! In an unprecedented interview, Dr. Oz puts the national spotlight on UNDER OUR SKIN and refers to the film as a new paradigm in medical filmmaking. Dr. Oz and his wife/producer, Lisa, conduct the informal but informative interview in their cozy Lincoln Center studio in New York. A prominent heart surgeon at Columbia University and regular guest on the Oprah Show, Dr. Oz has been called “America’s doctor” and gives the film and Lyme cause heightened awareness and credibility. This is a major opportunity for our film and the effort to put Lyme disease in the limelight. We urge you to listen in. The show will air Wednesday, November 26th at 1am, 7am, and 6pm EST. Oprah & Friends producers say people who don’t subscribe to the satellite radio can also listen by clicking here for a free 30 Day XM radio trial. Register and you can listen online. During the broadcast, Dr. Oz also asks Lyme patients in the audience to share their own stories. With enough of a response from the Lyme community, we hope to pique the interest of The Oprah Show, where Dr. Oz is a regular guest contributor. So be sure to tune in and write in! And remember to be courteous, thanking Dr. Oz for his interest in UNDER OUR SKIN and Lyme disease. Click here to email your Lyme story to Dr. Oz Click here to comment on Oprah's Community Forum Click here to listen to the first ten minutes of the interview

UNDER OUR SKIN gallops through the West

Andy Wilson — Wed, 10 Dec 2008 15:53:40 +0000

Last week the Salt Lake Film Society screened UNDER OUR SKIN at the Leonardo Theater as part of its series on health films. The theater was filled to capacity, with many viewers attesting that Lyme disease is completely ignored and discounted in Utah. One of the most satisfying results of the screening was that the film provided a venue for building not only awareness but also community. After the screening and impassioned Q&A, I heard that several viewers joined to create a new Utah Lyme disease support group. That the film is creating momentum on the grass roots level both to educate and create new alliances is very satisfying to us at Open Eye Pictures. And we would love to hear about the ways in which this may be happening in your community. So be sure to check out the UOS guestbook and share your own experience. The most challenging part of this Western tour, however, was waking up at 5AM in Park City for a 6:45AM TV interview on KSL TV in Salt Lake City. Susan Swartz, one of the film's executive producers and an accomplished environmental artist, accompanied me at the interview, during which we surely woke-up other Utahans with alarming Lyme stories and statistics. The next day, Susan invited me to attend a kick-off party for the Celebrity Ski Fest at Deer Valley Resort in Park City. There I bumped into actor Matthew Modine who, upon hearing about our film, immediately shared his own perilous journey with Lyme, telling me: "Lyme disease almost killed me." Then, later, I was introduced to Robert F. Kennedy Jr., who spearheaded the gala event to benefit the preservation of America's waterways. A resident of Lyme-hot Cape Cod, he shared that his whole family had battled Lyme through the years, and so was well versed in Lyme. I immediately put a DVD of UNDER OUR SKIN in his hands and told him that I was sure he would still find the film eye-opening and beyond the realm of what he thought he knew. The following day I moved on to New Mexico where the film played to almost sold out crowds in two screenings at the Santa Fe Film Festival. As had been the case in other film festivals, the festival organizers noted that UNDER OUR SKIN was one of the "most popular films" in the festival. Perhaps my earlier interview on Santa Fe's public radio station KSFR helped fill seats. A long Q&A followed the Saturday night screening and local Lyme activist Diane Marie remarked on how important it was that the film was brought to Santa Fe, where so many "desert dwellers" suffer in solitude: "We were stunned at the interest in your well made, high power documentary." As I ended my trip under the quiet beauty of falling snow, I was struck by the ubiquity of this hidden disease that levels us all, from desert dwellers to celebrities and stars.

Seasons greetings from the UNDER OUR SKIN team!

Andy Wilson — Sat, 20 Dec 2008 06:26:58 +0000

Happy holidays from all of us at Open Eye Pictures. We wish you all the best in health, hearth and heart for the coming year. Stay tuned for exciting news about UNDER OUR SKIN, including the launch of our nationwide theatrical release next Spring.

A message from Kentucky, where "Lyme don't exist"

Andy Wilson — Sun, 21 Dec 2008 03:42:33 +0000

Received by email 12/19/08 from Anonymous in Kentucky: Hello...I've so much appreciated the emails you send me. I am disabled from Lyme disease, and on September 14th, during a windstorm, my home caught fire and I lost about everything. At times I wish I had not gotten out alive. I so badly want to see UNDER OUR SKIN, but I am in Kentucky where "Lyme don't exist." I would like for my "doctor" to see the film as he now says I am cured because I didn't test positive lately--and he refuses to treat me. However, after having Dr. Burrascano treat me in the past (and I have not been treated since) I know better than to accept that my Lyme is gone. Most days, my pain is so severe that I would like to just die. Just go away. I've been dying in silence. Nobody here understands that. Dr. Burrascano did/does, but he can't help me anymore [because he quit his practice, as seen in the film]. When I first heard about UNDER OUR SKIN, I sent Dr. Oz and Oprah an email begging them to discuss it. I thank God he is doing just that now, and I have again sent them emails telling them of my story. I guess I will tell it as long as I have any strength to tell it. On your website, where it shows the lady doing the IV infusion herself, I cried. I did that for over nine months and then finally began to feel somewhat better. I never knew what "HEALTH" felt like until I was treated by Dr. Burrascano. He spent over three hours with me my first visit. He was like a Guardian Angel for me. I miss him so much. I miss that little fleeting taste of health I had. Now I feel worse than ever. God bless you and everyone at UNDER OUR SKIN....maybe with your DVD and help from above, we can actually spread the word about this monster.

Lyme film wins “Wild and Scenic” award

Andy Wilson — Thu, 15 Jan 2009 08:13:42 +0000

UNDER OUR SKIN won an Honorable Mention at the Wild and Scenic Film Festival, the largest environmental film festival in the United States. Set in the wild-west town of Nevada City, CA, this festival honors films that inspire viewers to go out and make a difference in protecting our planet. During the awards ceremony, the emcee recognized the relevance of UNDER OUR SKIN to the outdoorsy festival attendees, saying, "Though Wild and Scenic is primarily an environmental film festival, we felt that UNDER OUR SKIN was a fine example of how films can be used to educate and promote activism. It is a well-researched film that fairly presents both sides of an important health issue that effects us all." Also in attendance was Nevada City resident Jordan Fisher Smith, the author of “Nature Noir.” In the film, Jordan provides insightful observations on the Lyme disease epidemic and its relationship to global warming, as viewers follow his battles with the disease and his health insurance company. One festival attendee, Riki, sent in this review of the film: “I wanted to thank everyone who made this wonderful documentary film possible. I cried for the people who told their stories. I cried for myself. I have chronic lyme: I was bitten in 1988 when I was 38 years old. So I have experienced what they have, and I love all of you for telling our story and making more people aware that we are not crazy. Again, thank you to everyone who put this together."

Life is coming back: An update from Dana Walsh

Andy Wilson — Sun, 25 Jan 2009 11:57:55 +0000

Today is my one year wedding anniversary. Yes, I married that beautiful man in the film. Timothy Tobias. Life is good. If someone were to tell me five years ago that I would be diagnosed with Lyme disease, leave my job, run out of money, tour with U2, move to Seattle, meet Dr. Klinghardt, have friends cover treatments, be in a movie, marry a Canadian and turn 40 in Vegas, I would have said, "Yeah right, and our next president will be an awakened black man!" But it is all true. That's life isn't it? Things do turn around. I never thought I would get out of the Lyme hole (as I call it). Felt like I was walking along one day and suddenly fell into a black hole--dark and deep and no one knew I was gone. Year after year, I would shout out for help--scraping the walls with my fingernails trying to get a hold of something that would move me towards the light of salvation, only to slip back down into the dark again and again. I learned to surrender to the dark, but never take my eyes off the light above. And one day a man appeared with a rope. He showed me how to get out. The film ends where my treatment with Dr. Klinghardt begins. Now, two and a half years later, I am about 85% better. I'm not sure I will ever be "normal" and that is okay. Some days I feel like it never happened, and yet others I feel like it's day one. Still, overall, I am good. I bounce back quickly and have an education on how to restore my body to a balanced state. I am often asked about what my experience has been with Dr. Klinghardt. To this I always say: If a person is ready to face this illness--body, mind and spirit, then Dr. Klinghardt can help; otherwise, we know there isn't a cure, and recovery is a very personal, day to day journey. And in regards to antibiotics, he uses whatever is needed at the time. After ten years of Lyme, I've cleaned up and simplified my life. I have retreated deep into my soul and now I stand guard for everything that goes into body and mind. Whatever I have lost to Lyme I have gained ten-fold into my spirit. Life is coming back to me and I am so grateful. Be well, xoDana

Lyme destroys families: An update from Jordan Fisher Smith

Andy Wilson — Mon, 26 Jan 2009 02:37:32 +0000

As we shot the final scenes in UNDER OUR SKIN I was trying to live without antibiotic therapy. My doctors and I had attempted this before but within a couple of weeks of quitting, each time, I quickly got worse—the memory loss, the feeling of drunkenness, the disorientation, the arthritis in my hands, feet, shoulders, and knees. The fatigue. The loud ringing in my ears. The terrible sleeplessness. The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke. The difficulty and frustration communicating with others, in finding the right words. The exaggerated emotions. The numbness in my feet that would turn to burning pain and pins and needles, the stabbing pains in my legs and feet, and so on. But as Andy Abrahams Wilson and his crew recorded my narration for the film in late 2007 I was making it. I wasn’t getting worse. In fact I felt pretty darned good. Today, in January of 2009 I’m still off antibiotics and I’m doing well. I have so much to be thankful for. But I’ve also suffered damage to my life that cannot be undone. At the end of the movie, I say: “I still have my family.” And that didn’t turn out to be true. Prophetically, when the Open Eye Pictures crew first visited my home in 2005, my wife didn’t want to be filmed, and you don’t see her in the movie. My illness was hard for my wife. She had never taken care of a person who was sick and we both found out she wasn’t cut out for it. Lyme patients with brain problems—people who can’t sleep, people who are suffering terrible pain and discomfort, irritable people who are having trouble finding the words to express themselves—are hard to take care of, even for someone who has experience in caregiving. But the problems go farther than the individual caregiver. If someone in your neighborhood gets cancer, people show up with casseroles. Neighbors organize to support the affected family. Family members come from all over to visit and sit by the bedside of the affected person. But when someone gets Lyme, often none of this happens, and the Lyme family is terribly alone. My wife didn’t have that support, not from neighbors or friends or even our own families. Her life had not given her an opportunity to learn how to behave in an emergency, or when something difficult happened. She wasn’t going to the doctor with me, didn’t know the names or dosages of the drugs I was on. She liked being out of the house when possible. She seemed distant and out of touch. But given the terrible ignorance about Lyme around her, it’s hard to blame her for what happened. When things really got bad we went to a therapist. There I was, sitting in that therapist’s office with my central catheter taped to my chest. I’d been infusing myself with intravenous Rocephin every day. I told the therapist I had Lyme disease. But remarkably, he didn’t ask me questions about the disease and for the next two years what my wife and I got was regular marriage counseling. The illness didn’t really come up much. The therapist never spoke with my doctors to discuss the nature of my illness, never read the extensive reports on my brain problems or even asked to read them, and the result was, he didn’t know anything about Lyme or how it might affect our family life. I knew I had to get better or our family would fall apart. So I kept flying to New York for five years to see Dr. Burrascano. And in the end I got better, and it seemed like our lives were getting better too. But then, in the summer of 2008 my wife fell in love with someone else and in the fall of 2008 she left me for her new lover. Now we’re going through a divorce. I hear about this often from Lyme families. The tragedy is larger than the thousands of Lyme victims themselves. Lyme is also destroying families, and the really sad thing is, a serious illness is when people need their families the most. In December, ten years after my tick bite on duty as a ranger, State Compensation Insurance Fund (the insurance company you see in the movie sending me to one of their doctors) finally settled my worker’s compensation case. I thought now I’d get taken care of, no matter what happened. But this month they cut off all of my prescriptions, saying my doctor hadn’t turned in the right paperwork. We’re trying to get the prescriptions back, but to this day the insurance company has never reimbursed me for ten thousand dollars of medical bills and travel expenses I incurred during my last couple of years of seeing Dr. Burrascano. These problems with medical insurance and worker’s compensation are larger than Lyme. They are the failures of a system of medicine where giant corporations call the shots on your health care, telling your doctor what he or she can or cannot do for you. Let’s hope the Obama administration and the new Congress can do something about this perverse situation. But I’m still here, I’m better, and I still have my children, James and Emma, whom you see running up the rocks with me at the end of the movie. My book Nature Noir got fabulous reviews and even was briefly on the national bestseller list. Now I’m working on an exciting new book about American wilderness for Random House. I do some work for magazines from time to time and also lecture in various parts of the country on the outdoors, environment, national parks, wilderness, and, you guessed it: Lyme. Through the movie I have met Mandy, Dana, Elise, and Kris and we have shared our stories, and not without a few tears and a good many hugs. I have met Dr. Jemsek, Dr. Jones, and Dr. MacDonald. And I have had the pleasure of watching the young ballet dancer Marlena Connors—whom you see in the movie taking her first halting steps out of her wheelchair toward Dr. Jones—walk gracefully across a stage in high heels to a standing ovation from one of our New York audiences. Working on UNDER OUR SKIN has been one of the great experiences of my life. Thanks to Open Eye Pictures and Turn the Corner Foundation—a Lyme-related charity that supported production and distribution of UNDER OUR SKIN—we who appeared in the movie have been given a way to help others face the terror of tick-borne disease, to help prevent future cases, and perhaps, if we’re really lucky, to transform the politics around Lyme disease.

Feeling the pressure: An update on Dr. Charles Ray Jones

Andy Wilson — Tue, 27 Jan 2009 12:32:59 +0000

Many people ask us, What’s happening with Dr. Jones? For those of you unfamiliar with the history of Dr. Charles Ray Jones, the Lyme pediatrician featured in UNDER OUR SKIN, you may want to watch this 2-minute interview with Dr. Jones before you read on. Dr. Charles Ray Jones, a 79-year old Connecticut pediatrician, has treated more than 10,000 children with Lyme disease over the course of his career. In addition to seeing patients six days a week, Dr. Jones has spent the last four years and hundreds of thousands of dollars defending himself against state medical board charges of “inappropriate” treatment of children with Lyme and other tick-borne diseases. In late 2005, a divorced Nevada father who disputed having to pay half of his children’s Lyme disease medical bills filed a complaint with the Connecticut Department of Public Health (CT DPH) against Dr. Jones. After investigating the complaint, CT DPH brought charges to the state medical board, alleging that Jones diagnosed Lyme disease in the children without examining them; that he failed to consider other causes for their symptoms; and that he improperly prescribed antibiotics. According to the mother, who is also a registered nurse, Dr. Jones never diagnosed her children before their in-person exam: After an in-depth phone consultation, he simply agreed to renew her son’s azithromycin prescription for the chronic cough that was preventing him from going to school, until she was able to fly the children out to Connecticut for an exam. Long story short, Dr. Jones treated the two children for Lyme disease, and they got better. Dr. Jones got dragged through the courts for months. After two years of hearings and untold expenditures of taxpayer money, the CT DPH issued Dr. Jones a reprimand; placed him on probation for two years; and ordered that he pay a civil penalty of $10,000. This ruling is currently in appeal because of alleged bias with one of the medical board members. On January 6, 2009, a second round of medical board hearings began, this time questioning one of Dr. Jones’s clinical diagnoses of babesiosis, a Lyme co-infection caused by the malaria-like parasite Babesia. Expert testimony against Dr. Jones was provided by Dr. Peter Krause, who testified that a babesiosis diagnosis ideally should be made only after a positive blood test. Dr. Jones and many other tick-borne disease specialists base their diagnoses on test results, history, and symptoms, because the tests don’t always detect all of the Babesia strains and patients with suppressed immune systems don’t always test positive. It’s important to note that Dr. Krause has a patent pending on a Babesia diagnostic procedure, and an excerpt from his patent application says “presently, no optimal test is available for the diagnosis of babesia.” By supporting a standard of care that requires a confirmatory test before treatment, Dr. Krause stands to earn more royalties from his “invention.” What’s more, Dr. Krause is also an author of the 2006 Infectious Disease Society of America (IDSA) Lyme disease guidelines, which are currently being re-reviewed by a conflict-free panel upon orders from the CT attorney general’s office. For a summary of the IDSA Lyme panel’s financial conflicts, see clip #2 here. Dr. Jones supporters and Lyme disease patient advocates claim that the CT medical board hearings are politically motivated, and largely driven, behind the scenes, by the IDSA and insurance companies. They emphasize that none of the children in these cases were harmed; in fact all of them got better under Dr. Jones’s care. The CT medical board, based in Hartford, CT, the “Insurance Capital of the World” sought to impose a four-part Lyme standard of care after the hearings had ended. This standard would make it very difficult for physicians to diagnose and treat Lyme disease based on clinical criteria, and for patients to get insurance coverage for those treatments. Advocates cite the ILADS treatment guidelines, which present evidence that Lyme is a complex multi-systemic disease that must be diagnosed based on exposure, history, symptoms, and tests, given that the currently available Lyme tests miss well over half the positive cases. They also believe that if Dr. Jones is driven out of practice, it will send a chilling message to the mainstream medical community – it’s not safe to treat Lyme patients – and this will result in more truly sick patients being denied care. In the meantime, Dr. Jones wishes to convey his sincerest appreciation to all of his supporters. Because of generous donations to his legal defense fund, he has been able to continue treating desperately sick children during the four years of legal proceedings. Feeling the pressure of the 37% increase in Lyme disease cases from 2006 to 2007, Dr. Jones’s office is averaging three new patient calls a day, in addition to training new Lyme-literate pediatricians through the Turn the Corner Physicians Training Program. [Photo caption: Dr. Charles Ray Jones examining Marlena, the young ballet dancer featured in UNDER OUR SKIN.]

Looking toward the future: An update from Mandy Hughes

Andy Wilson — Wed, 28 Jan 2009 01:44:02 +0000

Happy New Year to my wonderful Lyme family! I’ve heard that my friends would like an update. Well, here goes: Sean and I are doing well and still living in sunny Orlando, Florida. After filming for UNDER OUR SKIN, Sean was tested for Lyme disease and his test came back as "equivocal." Basically, this means that he may or may not be infected. Luckily, he is no longer showing any signs or symptoms. Since the movie left off, Sean's energy level has returned to normal; and he is extremely active with an extensive list of sports/hobbies. As for myself, since the documentary I’ve maintained my oral antibiotic regiment, however; I am currently on a mini-break from oral medications (my break will be about 4 months in duration from January until May). I will resume all my medications again in May to complete my treatment. Dr. Jemsek is still my incredible, life-saving physician who is extremely understanding of my much needed antibiotic sabbatical. But now, because of the fallout from his legal case, instead of traveling to North Carolina, I now see him in South Carolina, where he has reestablished his practice. The reason for my lapse is because I am in school and working 30 hours per week. Can you believe it?!? I am wrapping up the prerequisites necessary for nursing school, and I am so excited. Fall of 2008 was my first time back to school in 9 years; I was so nervous. The semester ended up going really well and I am extremely encouraged to pursue my new career. I feel pretty drawn to the profession (go figure), and I am hopeful about my future. It is tough to work and go to school; I won’t deny that! I am stubborn (as if you couldn’t already tell that from the documentary), so I’m up for the challenge. My family is wonderful and they are behind me 110%. My mom is actually the one who first encouraged me to become a nurse. Now, with May fast-approaching, I am excited to begin my application process for nursing programs. Looking toward the future, I honestly would like to attain a master’s in nursing; however I am also content with taking it one day at a time. I need to see exactly what my brain/body can handle once the nursing program begins. Slow and steady wins the race, or at least that’s what I have to keep telling myself. Most of the symptoms that were seen in the documentary are gone, however; I do still experience pain, brain fog, and fatigue. I know that I’m not through with fighting the disease, but now I feel that I have an opportunity to regain the life that I had before Lyme. xoxo Mandy

Important update on community screenings

Andy Wilson — Wed, 11 Feb 2009 07:31:03 +0000

A sampling of community screenings across the U.S. We're happy to tell you that to date we have had over 400 community screenings of UNDER OUR SKIN in the U.S. and Canada, and we continue to get requests every day! We're getting the film deep into communities where it is having a profound impact. Because of the importance of this initiative and the strong support of the Lyme disease community, we have decided to continue to allow community screenings well beyond the previously announced March 15th cut-off date. However, as we gear up for the film's theatrical release this summer, we still cannot allow community screenings to take place near locations where we will have theatrical screenings. Therefore, we ask you to contact us for authorization for your future event. We will need to approve the screenings and advertising in advance. Of course, we are happy to partner with you in order to make your event a success by supplying promotional materials, advice, and DVDs to sell. As we get closer to Lyme Disease Awareness Month in May, we will make special efforts to partner with communities and organizations nationwide to use the film as an unprecedented tool to raise awareness. Visit our screenings section on the UOS website for further information. Thank you so much for your continued enthusiasm and support! Together we are making a difference. View upcoming and past UOS screenings Host a screening in your community

UNDER OUR SKIN a hit on Twitter

Andy Wilson — Sat, 14 Feb 2009 04:05:27 +0000

UNDER OUR SKIN just joined Twitter, the Internet networking service that is bringing together people from all over the world, and engaging them around topics of mutual concern. Last Thursday, February 5th, we had our first Twitter chat and were joined by people from three continents. UNDER OUR SKIN's producer/director Andy Abrahams Wilson and senior producer Kris Newby were on hand to answer questions--all be it in no more than 140 character responses. At one point during the chat, we were the #2 "most popular" chat in all the world. Because of this ranking, many people ventured into our chat room and were surprised that a forum on Lyme disease could be so popular. We know how ubiquitous and important the Lyme disease issue is, but the world doesn't. Twitter is one more way literally to spread the word (and I mean, "word"!) We invite you to follow us on Twitter. We plan to host regular Twitter chats and we would love it if you tuned in. It's a way to communicate directly with the filmmakers, film subjects and other Lyme patients. Click here to see a transcript (scroll from bottom to top) of the first UNDER OUR SKIN Twitter chat which took place on February 5th at 8:00 EST. Our next chat will take place on February 19th, also at 8:00 EST. Tweet with you then! - Follow us on Twitter - Join us on Facebook - Check out our channel on YouTube - Visit the UNDER OUR SKIN website

Discovery of new Lyme strains invalidates current tests

Andy Wilson — Fri, 27 Feb 2009 03:21:43 +0000

Benjamin Luft, M.D., Professor of Medicine at Stony Brook University Medical Center, discovered that four highly virulent mutations of Borrelia burgdorferi, the spirochete that causes Lyme disease, may account for the alarming increase in cases for the past 20 years. Luft’s investigation and findings were initially reported in Emerging Infectious Diseases. This genetic drift of the organism could explain why current Lyme disease tests, which were defined nearly two decades ago, are missing approximately 75% of the confirmed positive Lyme cases, according to a recent Johns Hopkins study. Pam Weintraub, author of “Cure Unknown: Inside the Lyme Epidemic,” recently interviewed Luft for the Psychology Today website about his findings:

“What we will find,” says Ben Luft of Stony Brook, “are proteins we never tested for on our ELISAs and Western blots—proteins we were never even aware of. But they will be the critical markers for invasive, infectious Lyme disease. Perhaps people who test negative on the old tests will become positive when we look for the right markers.”

Weintraub also discusses how the classic Lyme studies relied heavily on disappearing rashes as an objective signs of a cure, yet if the researchers unknowingly used one of the non-invasive Lyme strains that stay in the skin, they may have to redo these original studies in order for them to be scientifically valid. She adds:

“The answers won’t be found in the twentieth-century technology of the Western blot, by today’s standards crude yet still trotted out by IDSA as evidence absolute that they are right. (The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous "band" patterns more accurate than the one in use today.) Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme. With evidence of this calibre we won't have to fight over the truth: We will know what's going on.”

The controversy over Lyme disease testing is the subject of the new investigative documentary, UNDER OUR SKIN, which will open in theaters nationwide this summer. Photo Caption: The CDC-endorsed Lyme Western Blot test, shown above, is the second step in determining whether a patient is considered "CDC positive." This outmoded test is problematic, and under the 2006 IDSA Lyme guidelines, the subjective interpretation of one blurry line can mean the difference between treatment or not for many patients.

The doctor is in: An important update on Dr. Joseph Jemsek

Andy Wilson — Wed, 04 Mar 2009 03:05:32 +0000

When we began filming UNDER OUR SKIN, we had no idea that Dr. Joseph Jemsek, the North Carolina physician treating our main character, Mandy, would end up embroiled in a courtroom battle every bit as dramatic as Mandy’s struggle to regain her health. In 2006, Dr. Jemsek was the only Lyme specialist operating “above the radar” in the southeastern United States, and his clinic was admitting an average of 80 new patients a month, from 46 different states. Dr. Jemsek, an infectious disease specialist who had been treating AIDS patients since 1983, started noticing a growing number of very sick Lyme patients in his clinic around 2000. Using strategies he had learned from treating AIDS opportunistic co-infections, he began having good outcomes treating Lyme patients with long-term combinations of antibiotics. But Dr. Jemsek's vocal criticism of the Infectious Disease Society of America (IDSA) and its rigid position that 2 to 4 weeks of antibiotics cures Lyme disease, soon got him into trouble. After an email from a disgruntled Lyme patient ended in the hands of Dr. Allen C. Steere and Dr. Gary Wormser, lead authors of the IDSA Lyme guidelines, Dr. Wormser forwarded it with the header “Lyme Disease IV antibiotic treatment, Insurance Fraud in NC,” to the CDC, who in turn forwarded it to Curtis Ellis, Director of Investigations, North Carolina Medical Board. Once an investigation was opened, the board was at liberty to pull all of Dr. Jemsek’s Lyme patient files, looking for violations of the IDSA “standard of care,” which takes on the force of law in North Carolina, even though Dr. Jemsek followed the alternative ILADS Lyme guidelines. (ILADS guidelines cite evidence that’s supports this position: “The duration of therapy should be guided by clinical response, rather than by an arbitrary (i.e., 30 day) treatment course.” In the end, Dr. Jemsek’s license was suspended but “stayed” for a year, meaning he could continue to practice medicine under tight restrictions. However, Blue Cross Blue Shield of North Carolina seized the opportunity to follow up on the medical board’s judgment with a $20 million lawsuit, for Dr. Jemsek’s alleged “unnecessary” antibiotic treatments. (For more details, read the article, “Struggles Continuing Amidst Lyme Wars.”) Meanwhile, the CDC reports that Lyme disease cases continue to rise in the South, with North Carolina and South Carolina cases rising 71% and 55%, respectively, from 2006 to 2007. What's more, there is another Lyme-like disease, called Southern Tick-Associated Rash Illness or STARI, for which there is no accurate diagnostic test. This disease is spreading rapidly in this region, and like Lyme, it is treated with antibiotics. Dr. Jemsek, who has been in bankruptcy proceedings since 2006, was forced to close his practice in North Carolina. He has reopened his clinic in Fort Mill, SC, and currently has a three-month backlog of patients waiting to see him. One North Carolina Lyme patient summarized the impact of the Jemsek hearings: “I saw the chilling results after Dr. Jemsek was called on the carpet. Doctors in North Carolina live in fear of prosecution and countless chronically ill and infected people live without medical care. A doctor there told me that Dr. Jemsek was brilliant and may be proven correct in 20 years, but in the meantime, doctors can't risk losing their licenses by treating chronic Lyme disease.” For more on the climate of fear surrounding treating Lyme patients, watch the UNDER OUR SKIN video clip “Physicians under attack.”

Chronic Lyme: Real or imaginary?

Andy Wilson — Tue, 10 Mar 2009 02:06:22 +0000

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:

“…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.”

--Sigal’s employer, Bristol-Myers Squibb (BMS), sells two blockbuster drugs, , which treats rheumatoid arthritis and potentially Lupus, and " article in the New York Times.) Because these types of conflicts muddy the evidence-based medicine waters, we applaud 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 : For more on Chronic Lyme, see the video clip, "," on the UNDER OUR SKIN site.

Scientific evidence for "Lyme Rage"

Andy Wilson — Thu, 12 Mar 2009 00:27:11 +0000

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.”

"Into the Light" Gala a model of community engagement

Andy Wilson — Wed, 18 Mar 2009 05:48:48 +0000

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.

Why the IDSA Lyme guidelines must be rewritten

Andy Wilson — Tue, 24 Mar 2009 02:18:32 +0000

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: #NAME? #NAME? #NAME? (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

"Into The Light" gala an illuminating success

Andy Wilson — Fri, 10 Apr 2009 05:07:45 +0000

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.

Lifting spirits through song

Andy Wilson — Sun, 12 Apr 2009 04:51:47 +0000

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.

Art helps heal

Andy Wilson — Tue, 14 Apr 2009 14:54:32 +0000

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?

Turning awareness into action

Andy Wilson — Sun, 19 Apr 2009 12:59:48 +0000

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.

Uncover the Epidemic - We need your help!

Andy Wilson — Sat, 25 Apr 2009 01:03:09 +0000

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.

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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.

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Canucks rock! UOS racks (-up more awards)

Andy Wilson — Thu, 30 Apr 2009 22:14:07 +0000

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

Bringing the Lyme film to a theater near you

Andy Wilson — Sun, 03 May 2009 06:19:29 +0000

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!

Hiding an epidemic: Our broken Lyme reporting system

Andy Wilson — Mon, 11 May 2009 13:15:28 +0000

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"

Voting for change...at the box-office

Andy Wilson — Sun, 31 May 2009 14:42:52 +0000

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

Lyme discoverer Willy Burgdorfer breaks silence on heated controversy

Andy Wilson — Tue, 09 Jun 2009 23:17:18 +0000

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.”

UNDER OUR SKIN emerging in theaters: Join the movement

Andy Wilson — Sun, 14 Jun 2009 02:52:16 +0000

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!

NY reviews are in: UOS "infectiously persuasive"

Andy Wilson — Tue, 23 Jun 2009 02:49:33 +0000

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." #NAME? "[A] dizzying and dramatic documentary...handsomely reported and photographed." -Andrew O'Hehir, Salon "Infectiously persuasive...targets both the heart and brain." #NAME? "A scary expose [and] damning indictment of the broken health care system." #NAME? "A powerful film and cautionary tale....as significant an indictment of American medical practices as Michael Moore’s SICKO. #NAME? "Compelling...makes a very convincing case [about] one of the greatest medical failures of all time." #NAME? "A vital, insightful, brave and moving documentary that will wake you up and shake you up." #NAME? 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.

UOS joins Obama's "National Health Care Day of Service"

Andy Wilson — Wed, 24 Jun 2009 05:22:14 +0000

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.

UOS goes to Washington: Health Appropriations Committees get DVDs

Andy Wilson — Thu, 25 Jun 2009 04:43:06 +0000

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.

Democracy in action: Join the campaign for Lyme patient rights

Andy Wilson — Tue, 14 Jul 2009 05:30:30 +0000

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.

How to watch and Tweet the IDSA Lyme webcast

Andy Wilson — Thu, 30 Jul 2009 05:00:31 +0000

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 r ead 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

Good Morning America revisits Lyme: The difference a year makes

Andy Wilson — Fri, 31 Jul 2009 12:05:26 +0000

We were disappointed that yesterday's Good Morning America "Lyme rage" segment didn't include footage from or mention of UNDER OUR SKIN in its report, despite what the producer had told us. But it was interesting (and auspicious) to watch GMA's Dr. Marie Savard's evolution in her thinking. Just last year, in GMA's report about our movie, this same doctor dismissed Lyme as something that could be cured with "a single dose of antibiotics." Now she talks about her own serious battle with it! Suddenly, it seems, the cat's out of the bag, and many people are telling us that UNDER OUR SKIN has been instrumental in making this happen. Compare last year's GMA Lyme story and yesterday's story.

Tribeca Film Festival promotes UOS panel with Amy Tan

Andy Wilson — Sat, 01 Aug 2009 00:49:48 +0000

[caption id="attachment_238" align="alignnone" width="400" caption="Amy Tan and Andy Abrahams Wilson at Tribeca Film Festival"][/caption] Last year, when UNDER OUR SKIN had its world premiere (and was an Audience Award finalist) at the Tribeca Film Festival, it was one of three films selected to include a special "Behind the Screens" panel discussion. Bestselling author Amy Tan joined the panel (which also included filmmaker Andy Abrahams Wilson, Chief Science and Health Correspondent for NBC News, Robert Bazell, and LLMD Richard Horowitz, MD). Read the Tribeca press blog and watch the panel discussion in its entirety.

A summary of the IDSA Lyme evidence hearing

Andy Wilson — Wed, 05 Aug 2009 19:52:28 +0000

On July 30, 2009, a newly formed panel from the Infectious Diseases Society of America (IDSA) heard 8 hours of testimony from 18 presenters representing various viewpoints on Lyme disease diagnosis and treatment. This was the first time the two sides of the Lyme controversy have been given equal time in front of a conflict-free evidence-review panel. And it’s the first time that a medical guidelines hearing has been broadcast over the Internet for all the stakeholders to hear, from patients to researchers to treating physicians.

Over the past decade, two opposing camps have emerged in the battle over this tick-borne illness. One camp is represented by the group of 14 academic researchers who wrote the 2006 IDSA Lyme guidelines. They maintain that Lyme disease is ‘hard to catch and easy to cure’ because the infection is rare, easily diagnosed and cured with two to four weeks of antibiotics. This group claims that chronic infection by the Lyme spirochetal bacterium, 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.

This hearing came about as the result of an antitrust settlement initiated by Connecticut Attorney General, Richard Blumenthal in 2007. During his investigation, the Attorney General found substantial conflicts of interest among the 2006 panel members, who held commercial interests in diagnostic tests, vaccines, and insurance. In addition, he found that this panel had suppressed scientific evidence and had excluded opposing views from the panel.

After watching the entire hearing, my overall impression was that the community-based ILADS physicians gained significant ground in the evidence-based debate with the 2006 IDSA guidelines authors. The most compelling takeaway messages were:

1. THE GUIDELINES ARE TOO RIGID GIVEN THE STATE OF THE SCIENCE.
The science on diagnosing and treating Lyme disease is still uncertain, and we need guidelines that allow physicians freedom to treat until this disease is better understood. Based on a national patient survey conducted by Lorraine Johnson of CALDA, it was found that 58% of Lyme patients remained ill after the IDSA’s recommended treatment and 60% improved with longer courses of antibiotics. Even though the IDSA Lyme guidelines are supposed to be voluntary, they are widely used by insurance companies to restrict physicians’ ability to exercise clinical judgment, depriving seriously ill patients of the only available treatment option (long-term antibiotics) that can get them back to leading normal lives.

2. LONG TERM ANTIBIOTICS HELP SOME PATIENTS.
A meticulous dissection of the 4 peer-reviewed studies used by the IDSA to deny longer courses of antibiotics showed that 2 of those studies had serious design flaws and the other 2 actually showed that patients improved after 6 weeks of IV antibiotics. Given that these 4 studies were based on a total of only 207 patients and a single antibiotic, it was clear that much more treatment research is needed. The other revision that most of the expert panelists seemed to back is Dr. Volkman’s strongly held belief that the “two pill Lyme cure” recommended in the IDSA guidelines fails 80% of the time, and it should be removed from the guidelines. (Volkman Ph.D., M.D., is an Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook.)

3. CHRONIC LYME IS CAUSED BY PERSISTENT INFECTION.
Benjamin Luft, MD, from SUNY Stony Brook presented compelling evidence showing that the Lyme bacteria can persist in the body beyond the IDSA-recommended 2 to 4 weeks of antibiotics. He cited the Barthold (UC Davis) mouse study and other studies that demonstrated the multiple strategies that the organism uses to escape detection by the immune system. Overall, the weigh of evidence for the existence of chronic Lyme far outweighed the IDSA “expert opinion” that the symptoms that linger beyond treatment are due to a “medically unexplained symptom” (MUS), labeled as “Post-Lyme Syndrome” by the IDSA authors.

4. MORE ACCURATE TESTS ARE NEEDED.
Dr. Ray Stricker, as well as a number of other presenters, showed that the two-tier surveillance Lyme test system endorsed by the IDSA, though highly specific, lacks the sensitivity required for an accurate diagnostic test, missing 88 out of every 200 Lyme patients. This results in thousands of Lyme patients being misdiagnosed and undercounted. (The CDC admits that U.S. Lyme cases are being underreported by 6- to 12-fold each year.) The CDC spokesperson, Barbara Johnson, Ph.D., however, stood by these tests, even though the expert panel seemed shocked that the CDC’s endorsement was based on a decade-old study that looked at a mere 26 patients.

During the hearing, the 9 expert reviewers listened intently and asked many astute questions. This panel will now spend a few months assessing all information submitted before and during the hearing to determine whether the existing guidelines should be maintained, modified or entirely rewritten. The panel expects to complete its review by the end of the year.

Although I’m optimistic that anyone listening to all eight hours of testimony will see the urgent need to rewrite the guidelines in a major way, I worry that the officers and lawyers running this commercially-driven medical society may water down the conclusions to protect the society from lawsuits. All of the panel’s conclusions could be reversed if the IDSA officers assign a biased team of writers to execute the recommendations.

Three days after the hearing, my worst fears were realized when the IDSA President, Anne Gerson, M.D., said this, as if the hearing never happened:

“The physicians and scientists who wrote the Infectious Disease Society of America's (ISDA) guidelines thoroughly reviewed all the medical evidence and took great care to address the claims made by the small minority of physicians who advocate long-term antibiotic use.”

“The notion that the authors had financial conflicts of interest is absurd to anyone who has read the guidelines, which recommend generic tests and a short course of generic drugs.”

As the researcher for UNDER OUR SKIN who spent years uncovering the invisible conflicts of the 2006 IDSA guidelines authors, my conclusion is that the battle over these guidelines is not over conflicts surrounding the cure – a prompt course of off-patent antibiotics. (A curative dose of doxycycline or amoxicillin can be purchased at Walmart for $4.)

This conflict is all about a small group of academic researchers controlling every aspect of a disease for profit. They ignored or creatively interpreted new scientific data to protect their lucrative revenue streams from vaccine trials, arthritis/lupus/fibromyalgia clinical trials and government grants.

My impressions of the hearing and hopes for a happy ending were summed up nicely by Lorraine Johnson, the champion of the Lyme patients who organized much of the ILADS evidence:

“This hearing shows that the weight of the science falls on the side of providing patients with treatment options. The speakers supporting the 2006 guidelines relied heavily on conjecture, belief and reputation, advancing an unsubstantiated somatic disorder hypothesis for possible explanations of why patients remain ill. Hypothesis, conjecture and beliefs are not science and hopefully this panel will recognize that and gut these guidelines."

And here is my favorite quote of the day, which came from Dr. Ken Liegner, a Lyme-literate physician from Armonk, New York:

“This is a formidable pathogen. We should be humble before this disease.”

Finally, on a possibly hopeful note, the IDSA just requested from Open Eye Pictures nine copies of UNDER OUR SKIN which will be given to each of the panelists. In addition, we offered to screen the film and speak with it at the October IDSA conference in Philadelphia. Though we're skeptical this will happen, we're happy and humbled that the film is proving its potential to affect policy and people's lives.

You can view video footage of the hearing and download hearing presentations by clicking here.

Join the Facebook movie movement

Andy Wilson — Thu, 13 Aug 2009 04:40:32 +0000

Facebook has been an unexpectedly useful tool for spreading awareness and creating community around the film and the issue. After six months, the UNDER OUR SKIN film page has over 3600 film fans, and hundreds and hundreds of fan comments. The page provides updates on screenings, events, calls to action, press, photos and other pertinent information to the film and the Lyme community. Below (and is a "window" to the film's Facebook page wall. You can also embed the page on your own website and blog by cutting and posting the HTML code below. Thanks for joining us on Facebook and helping to create a movie movement.

"Fully loaded" DVD now available for pre-order

Andy Wilson — Mon, 17 Aug 2009 23:19:51 +0000

Finally, the "fully loaded" DVD of UNDER OUR SKIN is available for purchase. We are now accepting pre-orders, and the DVD will be shipped (hot off the press) in mid to late September. All consumer DVD orders placed in August will get a $5 discount and a free "Uncover the Epidemic" bumper sticker. Community group and educational purchases will receive a $15 discount. The DVD includes an hour of never-seen before footage (deleted scenes and additional characters, including Amy Tan and an appearance by U2's The Edge); interviews with Mandy, Dana and the filmmakers; a director's commentary; closed captioning; French, Spanish and English subtitles; theatrical trailer; and a special 32-page discussion guide.

‣ Pre-order the "fully loaded" DVD for home use only.
‣ Pre-order the "fully loaded" DVD for community groups and educational use.

Lyme cases spike 77% from 2006 to 2008

Andy Wilson — Mon, 24 Aug 2009 02:41:41 +0000

Click to download a PDF image or spreadsheet of this data.

Lyme disease continued its steep rise in 2008, as the CDC posted a final tally of 35,198 reported cases, a 28% increase over the previous year. Looking at a two-year timeframe, cases increased by 77% from 2006 to 2008. According to CDC epidemiologists, these reported cases are underestimated 6- to 12-fold, due to inherent flaws in its passive reporting system. So, the actual number of new Lyme cases in 2008 may total upwards of 420,000. And many Lyme-literate physicians believe that the real numbers may be even higher.

In 2008 the CDC changed its Lyme reporting process to include both “confirmed” and “probable” cases in the total, and during this transition year, it’s difficult to tell how this affected the accuracy of the case count. Fifteen states failed to report any “probable” cases.

Here are the states with the most reported Lyme cases in 2008:

This change in the Lyme disease surveillance process was initiated in 2008 to reduce the burden of mandatory CDC Lyme reporting on resource-strapped state and local health departments. But it did nothing to address the fundamental flaws in the Lyme surveillance criteria—it is still based on an inaccurate blood test and an outdated list of Lyme disease symptoms. [1]

To compensate for the ambiguity caused by bad tests and diagnostic criteria, local health officials often must make time-consuming calls to treating physicians for clarification. In New Jersey, for example, the health department found that:
–Each Lyme case took health officials 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
(The overworked New Jersey health department quantified the absurdity of the Lyme surveillance process in their report, “Burden of Lyme Reporting.”)

To add insult to injury, the Lyme surveillance criteria, which were initially designed as analytical metrics for CDC epidemiologists to track the spread of the disease, are being used inappropriately for Lyme disease diagnosis. While the CDC officially says that this surveillance criteria should **not** be used for diagnosis, the organization is sending a mixed message to physicians and patients by officially endorsing the Infectious Diseases Society of America (IDSA) Lyme guidelines, which mandate that this overly stringent surveillance criteria be met before patients can be treated. And though the IDSA claims that these diagnostic guidelines are not mandatory, they have been used as legal hammers in challenging the medical licenses of both Dr. Charles Ray Jones and Dr. Joseph Jemsek, two prominent Lyme-literate physicians who diagnose based on symptoms, exposure, and a less rigid interpretation of the tests.

Meanwhile, as the number of Lyme sufferers continues to climb by double-digits the silence from both the CDC and mainstream medicine is deafening. If the CDC reported an increase of 77% for AIDS, wouldn’t it be on the cover of every newspaper and medical journal in America? So what’s going on with Lyme disease?

The problem is that most people and frontline physicians believe that Lyme disease is a trivial, over-diagnosed illness that can be cured with 2 weeks of antibiotics.

The reality is that untreated or undertreated Lyme disease can result in a serious neurological infection, similar to syphilis, for which we have no accurate tests and a poorly defined set of symptoms. Information and research on this disease has been controlled by a small group of academic researchers, operating under the legal protection of the IDSA, who have conflicts of interest in Lyme-related vaccines, test kits, and the very definition of the disease. (For more information on these conflicts, watch this clip from UNDER OUR SKIN, review the ruling from the Attorney General of Connecticut, and read the book, “Cure Unknown.”)

Much to the frustration of Lyme patient advocacy groups, the CDC has allied itself to the narrow IDSA view of Lyme disease, and has repeatedly refused to incorporate new diagnosis and treatment information onto its website.

Recently, new research has shown that the CDC-endorsed blood tests, which are based on a single Lyme strain from Shelter Island, NY, may not be detecting all the bacterial strains of the disease.

In the recent IDSA Lyme evidence hearings, initiated by the Attorney General of Connecticut, David Volkman, Ph.D., M.D., Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, reiterated these evidence-based findings [3], saying:
–Persistent Lyme is well documented in mice, dogs, and man 
–The current Lyme tests are unreliable 
–The CDC surveillance case definition for Lyme is being misapplied

In light of this new evidence, it’s clear that the latest revision to the CDC Lyme surveillance criteria is akin to putting a butterfly band-aid on a cut to the femoral artery. The new regime at the CDC needs to look more accurate ways of tracking Lyme disease, such as the automated lab reporting system that they’ve funded for tracking Lyme disease in dogs, through Banfield pet clinics.
And with chronic disease accounting for 80% of our nation's health care costs, our public health system needs to know how many of our citizens are suffering from both the acute and chronic forms of Lyme disease.

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 the CDC case numbers, too, and by underestimating these numbers by a factor of ten, grants will go to other diseases. (We hope that our documentary, UNDER OUR SKIN, has helped to raise Lyme disease awareness, and in turn, the accuracy of the Lyme case count.)

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

Below: Though the CDC shows a majority of cases in the Northeastern states, there is evidence that the CDC-endorsed Lyme tests may be missing the new Lyme strains emerging in the South and West. Click here to view/download this map.

[1] A review by Stricker and Johnson (2007) of North American case-control studies of commercial two-tier Lyme testing reached the following conclusion: “The two tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) has a high specificity (99%) and yields few false positives. But the tests have a uniformly miserable sensitivity (56%)—they miss 88 of every 200 patients with Lyme disease.” An updated analysis including more recent studies found that the sensitivity of the two-tier test system was even worse (46%). This sensitivity is far below the 95% cutoff required for an accurate diagnostic test, and much worse than the 99.5% sensitivity of commercial HIV testing.

[2] Steven Phillips, MD. Evidence of Persistence in Chronic Lyme Disease. IDSA Guidelines Review Hearing. 7/30/09.

[3] David Volkman, PhD, MD. Evidence-based Observations in Lyme disease. IDSA Guidelines Review Hearing. 7/30/09.

UOS wins top award at International Health Film Festival

Andy Wilson — Mon, 07 Sep 2009 00:46:58 +0000

[caption id="attachment_452" align="alignnone" width="400" caption="Andy Abrahams Wilson receives award from festival jury and town mayor"][/caption]

UNDER OUR SKIN was just awarded "Best Feature Film-Silver Award" at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians. It was another great triumph of recognition within the medical community of a disease too long ignored and a health system riddled with commercial conflicts. I was fortunate to be present to receive the award (a commemorative silver coin of Hippocrates and bust of the Greek goddess of health Hygieia), as my trip was graciously covered by the U.S. Embassy in Athens. The Q&A (at 2AM!) was especially contentious, with a few physicians in the audience asking challenging questions. I was very impressed by the Greeks' natural and ancestral love of dialog and debate--and ability to genuinely listen to another viewpoint. This made it even more special and validating to be honored in the birthplace of medicine and the Hippocratic Oath, which reminds and challenges us some 2500 years later to do no harm to patients. One pledge stands out in particular as strikingly relevant in the Lyme disease arena:

"I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone."

And yet, Lyme-literate physicians (e.g. Dr. J. Jemsek and Dr. C. Jones) continue to be persecuted for upholding this oath. On the contrary, many physicians do untold harm by denying Lyme patients accurate diagnosis and effective treatment, so often telling them that their problems are "all in their head" or, as in Mandy's case, "There's no medicine for someone like you." May this award serve as another clarion call to return to the essence of medicine, in full humility and for the good of the patient. The film festival jury explained its award choice to UNDER OUR SKIN...

"For advocating at the frontier of medicine. The film provides an activist challenge to the medical profession on ethical review standards, long term treatment and the necessary attentiveness to those who suffer from Lyme disease."

See pictures from the festival on our Facebook page

What’s Under Our Skin? New research on Lyme biofilms

Andy Wilson — Fri, 25 Sep 2009 07:18:29 +0000

At the end of UNDER OUR SKIN, Dr. Alan MacDonald presented a revolutionary new hypothesis – that Lyme bacteria are able to shroud their colonies with protective biofilms – and this may explain why these pathogens can be so difficult to eradicate with short courses of antibiotics. [1]

His collaborator, Eva Sapi, Ph.D., Associate Professor of Biology and Environmental Science at the University of New Haven, is exploring why and how these biofilms form, in hopes of developing more effective treatments for chronic Lyme sufferers.

[Click on this video clip to watch a Lyme biofilm colony in action. The green fragments on the screen are a fluorescent protein (GFP) gene that has been derived
from the bioluminescent jelly fish, Aequorin victoria. This gene has been inserted into the genome of Borrelia burgdorferi strain B31 as a visual marker. It fluoresces green light when excited by a blue or ultraviolet light attached to a microscope. In other words, it's like a bike light attached to the Lyme bacteria.]

Biofilms are made up of a polymeric jumble of DNA, proteins and polysaccharides. They are known to cause persistent, antibiotic-resistant bacterial infections for a number of reasons. [2] First, the polymeric “slime” protects the bacteria in the center of the medusa-like colony, and the inner organisms often shape-shift into energy-efficient forms that can survive months to years in a dormant state, only to reemerge when the host environment is free of chemical threats. Second, antibiotics typically don’t work as well when bacteria are in a dormant state.

Dr. Sapi’s lab is currently trying to identify the chemical messaging that the bacteria use to trigger the formation of a biofilm, with hopes of preventing the formation of this antibiotic-resistant matrix. And she is testing a variety of enzymes and techniques for breaking up existing biofilms. In addition, her preliminary research has found that that Lyme biofilms are comprised of an abundance of calcium crystals, which she thinks could cause some of the joint irritation experienced by many Lyme patients.

Medical professionals and researchers who want to learn more about Lyme biofilms can join Dr. Sapi at the Lyme Research Workshop that will be held at the MediTenth Annual Scientific Session: 21st Century Lyme Disease Treatment, October 24-25, 2009 in National Harbor, Maryland 20745.

The California Lyme Disease Association (CALDA) will reimburse up to $500.00 out-of-pocket expenses for any actively practicing MD, DO, ND, NP or PA (in any state) who wants to attend this conference. This offer is also available for the Lyme Disease Association (LDA) conference, which is held the day before this conference at the same location. CALDA grants are limited and are only available to those qualifying professionals who are attending the conferences for the first time.

To read more about Dr. Sapi’s research, visit her website at:
http://www.newhaven.edu/unhtoday/archive/UNH_09172007/pages/faculty_profile.html

[1] Sapi E, MacDonald, A. Biofilms of Borrelia burgdorferi in Chronic Cutaneous Borreliosis. Am J Clin Pathol 2008; 129:000-000.

[2] Costerton JW, Stewart PS, Greenberg EP. Bacterial biofilms: a common cause of persistent infections. Science 1999;284:1318-1322.

Report from Portland screening

Andy Wilson — Fri, 02 Oct 2009 02:27:27 +0000

Here's a report from Anna from one of the Portland, OR UNDER OUR SKIN screenings. Feel free to share your stories with us too:

Hi Everyone,

Last Saturday's opening event of "Under Our Skin" at the Hollywood Theatre in Portland, Oregon, was a complete success. About 240 people attended. The panel went well - it was succinct and informative. Dr. Martin Ross, Dr. Tara Brooke, Tamara Gebhardt, and Miguel Perez-Lizano provided some helpful and beneficial information for the audience. The feedback I received noted that the panel was the best part of the afternoon.

By far, the best thing the event did was to connect Lyme sufferers together. There was the couple from Grants Pass, Oregon, who mentioned they had never been around so many Lyme people before. They mentioned they have been in treatment limbo ever since their Lyme doctor retired.

Then there was the young man who is grappling with his inability to provide for himself. He looked so tired and hopeless. I just wanted to give him a big hug.

And then there was the young woman who was wrestling with how she was supposed to pay for any of the treatment.

"Is there a foundation that helps people out financially?" she asked.

"If there was, it would be tapped out by now," I said.

Finally, there was the woman who attended on behalf of her cousin who has Lyme. The woman began to cry as she told me how devastating it was to watch her family member lose her job and spend her days on the couch. That's the kind of love I like to see.

So many people and so many stories of pain, suffering, hopelessness, confusion, despair. Yet, when we share and collaborate and exchange stories - when we show up to events like these - these stories start to become full of hope and possibility, too. This is the beginning of something new!

Save Dr. Charles Ray Jones, Lyme Pediatrician

Andy Wilson — Fri, 16 Oct 2009 04:07:55 +0000

Dr. Charles Ray Jones, the 80-year old Connecticut pediatrician featured in UNDER OUR SKIN, has treated more than 10,000 children with Lyme disease over the course of his career. In addition to seeing patients six days a week, Dr. Jones has spent the last four years and hundreds of thousands of dollars defending himself against state medical board charges of “inappropriate” treatment of children with Lyme and other tick-borne diseases. This is despite the fact that the Connecticut House of Representatives just unanimously passed a bill that reassures doctors that they will not face retaliation if they choose to diagnose chronic Lyme disease and treat it with long-term antibiotics.
[To read details of this legal battle, click here.]

Is this justice, or politics-as-usual in Hartford, CT, the "Insurance Capital of the World"?

With Connecticut Lyme cases skyrocketing up 118% from 2006 to 2008 and the state desperately needing every Lyme specialist it can get, why is Dr. Charles Ray Jones still being dragged through the courts? Today his defense fund is depleted, and he needs $8,000 immediately, or his attorney will be forced to resign. This will deal a devastating blow to Dr. Jones and all the children he treats, and it will set a dangerous precedent for other Lyme physicians.

You can watch an interview of Dr. Jones here.

To help, please donate whatever you can by clicking below.
http://lymesite.com/Dr_Jones_use_paypal_to_make_donations_to_.htm

Or mail donations to:
Pullman & Comley Trust Account-for Dr. Charles Jones,
Elliott Pollack c/o Pullman & Comley, LLC90 State House Square, Hartford, CT 06103-3702. Note "gift" in the memo field.

Top LA Times awards critic Tom O'Neil roots for UNDER OUR SKIN

Andy Wilson — Sat, 14 Nov 2009 04:24:52 +0000

Can this Lyme disease exposé get under Oscar voters' skins?

by Tom O'Neil, The Envelope, LA Times

Let's hope the Oscars cite "Under Our Skin" next week when the academy unveils the shortlist of titles in the running for best documentary feature. It's not only a compelling work of filmmaking; it's important because of its shocking message: Lyme disease may be going undiagnosed as a greater and more widespread threat to Americans' health than AIDS.

"Under Our Skin" has won more than a dozen top awards at film festivals (see the full list here at the docu's website), but it still doesn't have a U.S. distributor. It had its qualifying run in a Los Angeles theater to make it into the Oscar race — the week Michael Jackson died — but it still needs to be adopted by a major distributor to make sure it's widely seen. This is one of those cases in which the Oscars can play a starring role in an urgent cause.

At a time when America's leaders battle over how to fix the nation's healthcare system, "Under Our Skin" is an illuminating anecdotal example of what's ailing. Bravely, it spotlights many victims of a fast-growing epidemic of Lyme disease who go undiagnosed or misdiagnosed because of corruption in the healthcare biz.

"We've submitted this film at the Oscars because we want it to be seen by the largest number of people," producer-director Andy Abrahams Wilson tells Gold Derby. "If we get into the Oscars, it might make a big difference toward creating changes in the medical and insurance industries needed to save lives."

"Under Our Skin" has been a crusade for Wilson, who shot 400 hours of footage over five years while chasing suspicious medical and legal authorities to get justice for their victims: Lyme disease patients who can't get proper care because the medical industry doesn't see profit in it.

"We focus on several powerful cases," Wilson says, "but there were many others we encountered along the way — some too tragic to include."

See more about "Under Our Skin" at its website.

Lyme patients abandoned: Letters from "Under Our Skin"

Andy Wilson — Tue, 17 Nov 2009 06:53:08 +0000

We receive many letters from Lyme sufferers and occasionally we like to share them with the rest of the community. Frustrated by the impossibility of getting help, many reach out to their legislators, and some to the President of the United States. Here's one story that recently came our way and was particularly poignant:

August 18, 2009

Dear President Obama,

I am 39-years old and writing to you about healthcare reform. I would like to share my story with you in the hopes of putting another human face to the healthcare crisis in America. I am a single woman who was very athletic, outgoing and involved in my community, family, church, career, and friends before becoming debilitated with late stage Lyme disease.

I am three chapters of my dissertation short of a second part of a double PhD in Psychology with areas of focus in Neurology and Forensics. I have a Masters degree in Psychology with the same areas of specialty, and an Addictions Certification which is the accumulation of 6,000 supervised work hours, ten graduated level courses and a State Board exam. I started working in the field of psychology at age 18 and continued until I was 33 years old when I could no longer work due to the level of debility from Lyme disease.

I was diagnosed in 1994 with Lyme disease, given a course of antibiotics and told I was cured. I was not cured and my health continued to decline.

I went from doctor to doctor searching for answers. After years and years of misdiagnoses, I was finally properly diagnosed in 2005 with late stage Neurological Lyme disease with many co-infections. Since that time I have been searching for a doctor who will take me on as a patient while the Lyme and other co-infections wreaked havoc on my body. I am not able to perform even the simplest of day-to-day tasks due to the chronic and severe level of physical pain.

I lost my health insurance and have not been able to get more due to pre-existing conditions. My finances are depleted from years of misdiagnoses and improper treatments. I have not been able to get the help I need due to financial restraints and a lack of knowledge about late stage Lyme disease here in Florida.

I now have a team of doctors who are willing to take my case, but the team of doctors resides on the West Coast and I live in Florida. All of this treatment is out of pocket. I do not have insurance as I have either been told I am ‘uninsurable’ or that the premiums will be so high I could not afford it.

I would like to know what your healthcare reform will do to help someone like me?

What can we do in this nation so people will not have to suffer as I am? What I am suffering could have been avoided if given the proper diagnoses and treatment in a timely manner. I am laying here literally dying a very slow, agonizing death, and without the medical help I need. I am a young woman, and have been told by many organizations that if I had a family of my own, if I was older, if I was a child, or if I was a minority . . . then resources would be available to me.

How, in a Nation of equality, is such an injustice permitted?

I understand that some of your staff has viewed the groundbreaking documentary film, UNDER OUR SKIN. This film depicts the growing epidemic and political controversy surrounding Chronic/Late Stage Lyme disease as well as the grave nature of the disease. This film has been instrumental in helping Lyme disease sufferers to gain understanding from family, friends, and the medical community as a whole. UNDER OUR SKIN helps to clear up the many questions related to timely diagnoses and effective treatment of Lyme disease. In light of your healthcare reform initiatives, I am begging you to personally watch this film and take action. Lyme disease is an epidemic of proportions unparalleled to most diseases that have swept this nation and the world. Please take a personal interest in Lyme disease and in using the film to help educate the American people about this widely misunderstood disease.

Please help me save my life and please help others in similar situations to save their lives. Do not allow us to continue to be a population who falls through the cracks.

Thank you for your time in reading my letter. I hope and pray with all of my heart that you will consider all I have shared and allow it to sink in with empathic understanding, following with some action taken to help.

Respectfully Yours,

Elizabeth C.
Boca Raton, FL

www.helpelizabeth.net

UNDER OUR SKIN makes the Oscar "short list"

Andy Wilson — Thu, 19 Nov 2009 09:16:18 +0000

The Academy of Motion Picture Arts and Sciences today announced that UNDER OUR SKIN was selected as one of the 15 finalists competing for “Best Documentary Feature” in the 82nd Academy Awards®.

Unfolding like a real-life thriller, UNDER OUR SKIN exposes the hidden epidemic of Lyme disease and reveals how our corrupt medical system is failing to address one of the most serious illnesses of our time. Open Eye Pictures is thrilled that the Academy has honored the courageous Lyme patients and physicians whose stories are told in this film. And we hope that this nomination will help spread awareness about this devastating disease and serve as a catalyst for fixing our country's broken health care system.

The Documentary Branch Screening Academy Committee viewed all eighty-nine qualifying documentaries during the preliminary round of voting. Academy members will now select five nominees from among the 15 titles on the shortlist, and Academy Awards nominations will be announced on Tuesday, February 2, 2010.

UNDER OUR SKIN in Tribeca Oscar semifinalists screening

Andy Wilson — Tue, 29 Dec 2009 03:58:49 +0000

UNDER OUR SKIN was one of six documentaries selected by New York's Tribeca Film Institute for a special January 9th viewing marathon of the most promising films on the 2010 Oscars feature documentary short list.

We encourage UNDER OUR SKIN supporters in the New York area to pack the theater with friends to help generate a groundswell of public support for the final Oscar nominations, which will be announced on February 2, 2010.

For more information and tickets, visit http://www.tribecafilm.com/docseries/

Saturday, January 9 at 8:30pm
Tribeca Cinemas
54 Varick Street (Laight below Canal)

UNDER OUR SKIN continues to garner critical acclaim among the Oscar watch pundits. The film was selected as one of the "Best films of 2009" by the movie awards website InContention.com, which also predicted UNDER OUR SKIN would be among the five nominated documentaries. Our fingers are crossed as we enter the home stretch. Having an “Oscar nominated” label on the film will do more to boost awareness about Lyme disease than 1000 press releases. Keep up the good work. Spread the word.

Acclaim for UNDER OUR SKIN:

“Like a well-made thriller, gets under your skin…More deeply terrifying than any slasher film you'll ever see.” - Michael O'Sullivan, Washington Post

“Fascinating...artful and compelling.” - Frank DiGiacomo, Vanity Fair

“Scary enough to make the faint of heart decide never to venture into the woods.” - Stephen Holden, New York Times

“Frightening, powerful stuff.” - Gary Goldstein, Los Angeles Times

“The most important documentary to come out this year.”  - Molly Dedham, Sirius-XM Radio

“Stirs the deepest emotions and reveals the most unsettling truth.” - Justin Berton, San Francisco Chronicle

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

"Dramatically compelling...a ripping indictment of the medical establishment's failure to uphold its oath." - Dann Gire, Chicago Daily Herald

"A powerful film and cautionary tale...as significant an indictment of American medical practices as Michael Moore’s Sicko." - Curt Schleier, Film Sound Off

“One of the most frightening horror movies I've seen. The evil in it springs from deer ticks and human ignorance, both of which seemed to be omnipresent.”  - Lawrence Toppman, Charlotte Observer

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

“Rock solid...paced like a horror story.” - Susan Orlean, The Daily Beast

"Best Films of 2009" - InContention.com

"Enlightening and alarming...Wilson takes us on a journey of discovery." - Leonard Maltin, Film Critic

Recognition for UNDER OUR SKIN:
Audience Choice Award Finalist, Tribeca Film Festival ; Best Documentary, Houston International Film Festival ; Best Documentary, Sonoma International Film Festival;  Best Documentary, Durango Independent Film Festival ; Best Documentary, Okanagan International Film Festival;  Best Documentary, Camden International Film Festival;  Audience Favorite, Durango Independent Film Festival ; Audience Favorite, Okanagan International Film Festival ; Best Picture Silver Award, International Health Film Festival;  Best in Health & Science, CINE Golden Eagle Awards;  Best in Category, International Health & Medical Media Awards;  Best Cinematography, International Health & Medical Media Awards;  Chris Award, Columbus International Film Festival;  Best Documentary Silver Award, Asheville Film Festival ; Honorable Mention, Wild & Scenic Environmental Film Festival ; Audience Award Runner-up, Berkshire International Film Festival ; Best Socially Conscious Documentary Nominee, IFP/Fledgling Fund

More Delays in Lyme Guidelines Revisions

Andy Wilson — Mon, 11 Jan 2010 08:02:02 +0000

The Infectious Diseases Society of America (IDSA) has missed its target date of December 31, 2009 for rendering a decision on whether it will rewrite its Lyme disease medical guidelines, which according to a group of leading Lyme disease specialists, “mislead clinicians and result in poor patient care.”

Diana Olson, IDSA VP of Communications, said that the medical evidence review panel, which has met over a dozen times in 2009, is aiming to release recommendations “as early as possible in the new year.” If a rewrite is called for, the IDSA revision would be completed in “several months to a year or more”, leaving suffering Lyme patients in treatment purgatory for four years since the scientific integrity of the guidelines was first questioned.

The reevaluation of the IDSA Lyme guidelines was driven by an antitrust investigation led by Connecticut Attorney General Richard Blumenthal. During his 17-month investigation, Blumenthal found substantial conflicts of interest among the 2006 guidelines authors, who held commercial interests in Lyme-related diagnostic tests, vaccines, and insurance. In addition, he found that this panel had suppressed scientific evidence and excluded opposing views.

In December, Senator Chuck Grassley launched an investigation into the conflicts of interest of 33 other medical societies, saying in a press release, "These organizations have a lot of influence over public policy, and people rely on their leadership. There's a strong case for disclosure and the accountability that results."

During the 2.7 years since the IDSA Lyme guidelines investigation began, IDSA leadership has shown a consistent lack of concern, remorse or urgency in correcting possible inaccuracies and biases in the 2006 Lyme guidelines.

As soon as Blumenthal’s investigation was announced, IDSA’s conflict-riddled panel launched a far-reaching campaign to disseminate their 2006 recommendations across the U.S. medical information network through physician continuing education (CME), medical textbooks, infectious disease board certification courses, online resources, and medical school lectures. So, even if the IDSA guidelines are revised immediately, it could take a year or more to remove flawed diagnosis and treatment recommendations from the system.

Furthermore, rather than censuring the guidelines chairman, Gary Wormser, M.D., for violating the IDSA’s conflicts-of-interest policies by holding “a bias regarding the existence of chronic Lyme” and handpicking “a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee,” the IDSA leadership awarded Wormser the IDSA’s 2007 Society Citation for being “a bold champion for rational, evidence-based medicine.”

To add insult to injury, three days after the mandated evidence hearing, which according to many observers was an evidence-based victory for Lyme patient advocates, former IDSA president Anne Gershon denied any IDSA wrongdoing, saying, “IDSA’s signing the agreement was not, as [Blumenthal] alleges, an admission of guilt, but an effort to end a fruitless investigation.”

Gershon went on to say, “The notion that the authors had financial conflicts of interest is absurd to anyone who has read the guidelines, which recommend generic tests and a short course of generic drugs.”

Lyme disease policy expert, Lorraine Johnson, J.D., M.B.A., explained why this IDSA statement is misleading: “People in the Lyme disease community know that conflicts of interest were a big issue in the Lyme vaccine. We also know that the narrow disease definitions that suited the vaccine trials the best, hurt patients by denying and delaying diagnosis to patients with Lyme.”

Johnson provided details on the author conflicts in a recent article in the Journal of Medical Ethics:

“The most influential panelists on the IDSA guidelines panel had commercial interests related to Lyme vaccines, diagnostic tests, and insurance. Some of the panelists had been involved in the development of the first Lyme vaccines—had run the clinical trials for these vaccines--vaccines which were withdrawn from the market after patients reported serious neurologic side effects. Some had been sued as part of a class action lawsuit or served as expert witnesses for the vaccine manufacturer. Some of the panelists acknowledged they owned Lyme diagnostic tests or were working on the second generation of Lyme vaccines, which are still under development.”

In the meantime, as the number of U.S. Lyme cases grows by about 30% per year, Lyme patients are trapped between a broken health care system and biased medical guidelines that are being used by insurance companies to deny treatment.

Here’s to hoping that Senator Grassley and CT Attorney General Blumenthal (who is now running for the Senate) will put some legislative teeth into making "non-profit" medical societies like the IDSA more accountable for patient welfare and less beholden to vaccine and drug manufacturers.

Photo caption: At the July 30, 2009 Lyme evidence hearing, ILADs submitted 300 pages of analysis and 1,300 pages of peer-reviewed research contesting the IDSA Lyme Guidelines recommendations.

For an overview of the Lyme controversy, watch the UNDER OUR SKIN trailer:
/trailer

For a detailed timeline of the IDSA Lyme Guidelines investigation, IDSA_Investigation_Timeline.

Lyme film featured in People Magazine

Andy Wilson — Sun, 31 Jan 2010 05:31:18 +0000

Under Our Skin is featured on page 40 of the February 8, 2010 issue of People Magazine. (Cover image: Elizabeth Edwards.)

While Oscar Fades, Fargo awards UNDER OUR SKIN top prize

Andy Wilson — Wed, 03 Feb 2010 03:24:10 +0000

UNDER OUR SKIN just received a “Best Documentary” award from the Fargo Film Festival, which will be held from March 2-6, 2010 at the newly restored Art Deco Fargo Theater. This is the sixth "Best Documentary" award that UOS has received at international film festivals, in addition to several top medical media awards.

Fargo Film Festival Chair Tom Brandau said the film won by a unanimous decision, and affirmed:

"UNDER OUR SKIN is a wonderful film and I know our festival goers will think so too. I also wanted you to know that the film is up for additional awards, which will be announced during the festival.”

As many of you may have heard, UNDER OUR SKIN didn’t make it into the Oscar finals, but we are honored to have made it to the top 15, and to be considered among so many excellent films. During our publicity campaign, thousands more learned about the hidden epidemic of Lyme disease.

In the meantime, we will continue our efforts to spread the word through film festivals, television broadcast, educational distribution, and community outreach. To learn more about hosting or attending a screening in your area, visit our website.

Dr. Jones Update: Crime and Punishment in CT

Andy Wilson — Wed, 03 Mar 2010 05:32:07 +0000

Last week the Connecticut Medical Examining Board (CMEB) voted to discipline Dr. Charles Ray Jones, the 80-year-old pediatrician featured in UNDER OUR SKIN, for technical violations in the way he diagnosed and treated three children suspected of having tick-borne diseases.

The medical board’s final decision, which will be signed in March, specifies that Jones pay a $10,000 fine and finance four years of supervised probation by a licensed pediatrician. This is on top of another $10,000 fine and two years of probation specified in a 2007 ruling, which is currently in appeal.

Jones supporters question the fairness of the proceedings against this pediatric Lyme specialist, who has treated more than 10,000 children with tick-borne diseases over the course of his career. Dr. Jones’ lawyer, Elliott Pollack, believes that the undue harshness of the sentence is related to the heated controversy surrounding his use of long-term antibiotics in treating children with persistent Lyme disease.

The medical board, on the other hand, says that the most recent charges are not related to Lyme disease. The panel chairman, Dr. Richard Bridburg, elaborated: “For us, at least, this issue was perhaps because of the size and busyness of Dr. Jones’ practice, we thought that he takes shortcuts.” (Source: Hartford Courant)

While no one disputes that Dr. Jones took “short cuts,” a review of all CT Physician Disciplinary Actions 2009 rendered by the CT medical board raises questions about fairness of his punishment for these procedural issues.

Last year the medical board punished 43 physicians for serious charges such as substance abuse, sexual misconduct, mental illness, and negligence; not one of these physicians received a fine larger than $5,000. And only one other physician, accused of drug abuse, received a longer supervised probation period than Dr. Jones – though this drug-addict doctor did not receive the additional $20,000 in fines levied on Dr. Jones.

None of Dr. Jones’ treatments resulted in patient harm and his medical decisions were motivated by his desire to begin the treatment of these very sick children as soon as possible. The cases under investigation were:

Case 1: Dr. Jones ordered tick-borne disease blood tests for two siblings he hadn’t physically examined, in advance of an appointment, based on a phone interview with the children’s grandmother.
Case 2: Dr. Jones prescribed antimicrobial drugs over the phone for a child who had tested positive for Babesiosis, a serious tick-borne disease similar to malaria, before a physical exam. This was after interviewing the mother and a referring health care provider, and learning that the child had a history of a tick bite and a physician-observed Lyme rash.

Irrespective of whether the punishment fits the “crime,” the medical board’s six-year investigation into Dr. Jones has sent a headline-grabbing message to every pediatrician in Connecticut – If you treat children with Lyme disease with more than four weeks of antibiotics, you may lose your medical license and be treated as a pariah among your peers. So, with Connecticut Lyme cases skyrocketing up 118% from 2006 to 2008, and the state desperately needing every Lyme specialist it can get, the children of Connecticut are the ones receiving a potential life sentence of suffering, if they acquire one or more tick-borne diseases.

Whether they admit it or not, the Connecticut medical board has turned their hearing rooms into a virtual battlefield for the two standards of care in Lyme disease: the academics at IDSA (with “one-size-fits-all” antibiotic limits) v. the ILADS community-based physicians (who treat until the child is well). With the board’s expert witness list drawing from IDSA-friendly Yale and UConn, it’s no secret where the CT board's loyalties lie. Given that the IDSA Lyme guidelines are under legal scrutiny by the Attorney General Blumenthal of CT, it’s time that the citizens of Connecticut ask their medical board, “Is justice being served here?”

To watch an interview with Dr. Jones, click here.

For the history of the Dr. Jones legal battle, click here.

To read a new statement by Dr. Jones, click here.

“Shame on you IDSA” says UNDER OUR SKIN's Jordan Fisher Smith

Andy Wilson — Mon, 26 Apr 2010 06:39:59 +0000

Jordan Fisher Smith, the eloquent park ranger featured in UNDER OUR SKIN and the author of the acclaimed naturalist book “Nature Noir,” has written this open letter to the Infectious Diseases Society of America (IDSA), in response to the society's decision to make no changes to their controversial 2006 IDSA Lyme Disease guidelines.

___________________________________________

To the Infectious Diseases Society of America:

Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you've done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.

By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.

Your ineffectiveness and the extent of your compromise with the insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life's work is an unchecked epidemic.

---Jordan Fisher Smith, recovered victim of tick-borne disease

___________________________________________

Lorraine Johnson, CEO of the Lyme patient advocacy group California Lyme Disease Association (CALDA), questions the integrity of the evaluation, saying that the IDSA “stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which ‘validated’ their guidelines.”

The Connecticut Attorney General Richard Blumenthal is currently reviewing the IDSA Lyme report to determine whether the IDSA has violated the Settlement Agreement.

If you would like to submit your feedback on how the IDSA Lyme disease guidelines have affected you and/or your family, emails can be sent here:
attorney.general@po.state.ct.us

To send a copy to the IDSA leadership:

Richard Whitley, MD, IDSA President: rwhitley@peds.uab.edu
Diana Olson, IDSA VP of Communications: dolson@idsociety.org
James M. Hughes, MD, FIDSA, IDSA President-Elect: jmhughe@emory.edu
Mark A. Leasure, IDSA Chief Executive Officer: mleasure@idsociety.org
Carol J. Baker, MD, IDSA Lyme disease panel chair: cbaker@bcm.edu

Photo by Jim Herrington

Medical panel keeps Lyme guidelines “as is”

Andy Wilson — Sat, 01 May 2010 02:19:50 +0000

Photo: Gary Wormser, MD, lead author of the IDSA guidelines, attributes many chronic Lyme symptoms to “the aches and pains of daily living.”

After reviewing 3,000 pages of evidence challenging advice in its 2006 Lyme disease medical guidelines, eight Infectious Diseases Society of America (IDSA) panelists voted to keep the 45-page document “as is.”

Dr. Robert Bransfield, the president of a group of community-based Lyme specialist physicians (ILADS) issued this statement in response:

“It’s a sad day for the health care system and for everyone who suffers from the Lyme disease epidemic. The IDSA’s flawed positions means patients will continue to suffer with incorrect diagnosis and improper treatment.”
"By and large, the people on the IDSA panel who made this decision are ivory tower researchers," says Bransfield. "They're not the doctors on the front lines looking into the eyes and faces of these very sick patients, performing exams and then assuming long term responsibility for dealing with patients suffering from chronic Lyme.”

Bransfield and ILADS point to a number of discrepancies and other concerns about the vote, including:

---68 out of 69 of the original 2006 recommendations under review were OK'd with unanimous votes. "How can there be such a total consensus with any scientific issue?" asked Bransfield. "It's highly suspect and beyond comprehension."
---If Lyme cannot be chronic, then why did the guideline's authors acquire 200 Lyme disease patents and receive $76 million in Federal funds to study it?
---The original guidelines are not only controversial, but written back in 2006, are considered old and out of date.
---The CDC has also advised for many years that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate 50% of the time.
---The IDSA's decision reinforces that doctors have little control when it comes to treating diseases such as Lyme. Researchers and insurance companies remain in the driver's seat of diagnosis and treatment.

In May 2008, the IDSA agreed to re-evaluate its Lyme disease guidelines as part of a settlement agreement for an antitrust investigation by the Attorney General of Connecticut, Richard Blumenthal. The crew of the documentary, UNDER OUR SKIN, covered this investigation as it unfolded, and revealed some of the evidence alluded to in Blumenthal’s investigation, including the significant conflicts of interest among the original IDSA guidelines panelists, suppression of scientific evidence by panelists, and exclusion of panel members with opposing viewpoints.

During a telephone press conference on the IDSA’s announcement of the ruling, IDSA president Richard Whitley, MD, said he thought Blumenthal had been "misguided by the [Lyme] activists” and that the antitrust suit against IDSA wasn’t “justified or warranted."

- To read the IDSA report, click here.

- To read the ILADS response, click here.

- To download a detailed history of the IDSA investigation, click here.

- To read the Attorney General’s release on the investigation, click here.

- To read UNDER OUR SKIN's Jordan Fisher-Smith's letter to the IDSA and learn what you can do, click here.

"UNDER OUR SKIN Saved My Life"

Andy Wilson — Wed, 20 Oct 2010 00:24:32 +0000

We received the following email in August from Nathan Land, a newly married former athlete in Florida. The subject of his email was: "Your documentary saved my life." Years after the film's release, we want to continue to share moving personal stories that illuminate the experience of Lyme sufferers and communicate the need for awareness. Nathan's story was particularly touching:

I want to thank you for making the documentary UNDER OUR SKIN. Before seeing it, I was living a tortured life from the moment I opened my eyes to the time they were closed. I had severe insomnia, major panic attacks, anxiety throughout my day, arthritis in my joints that became unbearable. I became socially detached and would not leave my house for days, sometimes weeks at a time. I have constant tremors like I'm an old man, involuntary jerks, especially at night or anytime I try to relax my body. I have a rash on my face most of the time, am tired all the time, and any sort of exercise or exertion sends me over the edge into a shaking, dizzy, anxiety filled mess.
Going back in time, I had just graduated college in 1999 from the University of Florida and was setting my sails on life's great journey. I had played baseball and football all my life until then and was still playing softball three nights a week at this point. I was a very fit, strong active young man. On top of that I was working full time and going out at least two nights a week with friends. Suddenly I began feeling very tired all the time, could not sleep for the life of me and started having panic attacks. I didn't even know what a panic attack was at the time. All of this stuff was very scary and led me to the emergency room numerous times. I also began seeing every type of doctor I could find. Neurologists, cardiologists, psychologists, a rheumatologist, a gastroenterologist, etc. I was examined by anyone and everyone I could find. The answers were always the same. "You look like a healthy strong young man. You need to go out, live your life and stop thinking you are sick. The mind can really be powerful. You should go to see a psychologist, they can help you." The problem with that was I had already been to a psychologist and was on a myriad of psychotropic drugs and none of them did a thing for me - except the Xanax which would provide temporary relief from the panic and anxiety that gripped me so tightly.
After seeing numerous doctors from 2000 to 2002 and getting no diagnosis, I began researching on the internet looking for answers. I would search and search on these self diagnosis websites, and compare my symptoms to each and every disease or disorder I could find. When I came across Lyme, the symptoms page jumped off the screen! I was certain this had to be what ailed me. I went to an infectious disease doctor and took a western blot test. The blood test came back negative and I was told that I ABSOLUTELY DID NOT HAVE LYME! The doctor neglected to mention that the test they administered, the western blot test, was unreliable and could not rule out Lyme completely. Instead he, in my opinion, breached the Hippocratic Oath by advising me with 100% certainty that this was not the disease which was slowly taking away my life. So, based on what he told me, I put Lyme disease out of my head and moved on to search for answers in other directions. Those answers would never come, and unknowingly eight more years of misery were ahead.
By 2003 I was so sick I could no longer work and I began staying home most of the time. I would have good days, bad days and really bad days. It was a mixed bag. After about 5 more years, my symptoms progressed to the point of no return. I no longer had good days. I experienced an inescapable torture in my body and an unrelenting misery in my mind. I thought any day could be my last, and that all those doctors had missed whatever it was inside of me that was doing these horrible things. I decided to make one last effort to see doctors. I was admitted to some of the top medical institutions in the country. I went to Johns Hopkins University and was tested extensively by many doctors and once again they came up empty handed. I then went to Alabama for the Andrews Sports Medicine and Orthopedic Institute to get help with my joints. They confirmed I had arthritis in my joints and were baffled how someone as young as I would be developing this arthritis. However there wasn't much they could do for me other than give me pain meds which I did not take. I wasn't looking for something to mask the problem, I was looking for an answer to the problem. The Mayo Clinic was strike three for me. After spending 3 months in and out of their clinic: they also came up with nothing. My last shred of hope had vanished and I just wanted to escape my pain and misery any way possible. I'm a fighter and I was literally wondering how many more days I could wake up to the certain misery that awaited me. This was my darkest hour. The hour where you must decide if life is worth the fight, an hour that many don't come back from.
Just when my mind was getting too weak to keep going, out of nowhere I stumbled upon a review online about this documentary called UNDER OUR SKIN. It had excellent reviews and it sounded like something I should check out. So I got a copy and watched the film. I couldn't believe my eyes seeing these people and hearing their stories. I was in disbelief that my story was being told right in front of me. Only it wasn't me telling the story. It was others who have had the same struggles as me and for the first time in a decade I didn't feel alone. I watched the film again with my wife. And then watched it again with my parents. That hope that had slipped away from me was back and a light appeared down that long dark tunnel I had lived inside for so long. A light I had not been able to see for many, many years. In fact this year marks a decade of suffering for me. And I trudged forward all those years to finally see that light and God, I cannot tell you how beautiful it was.
I then made an appointment to see a doctor in your film named Dr. "X", and felt strongly that he was the man to help me. I found out he had moved his practice to Washington, DC, and soon I was on a plane to see him. Dr. "X" examined me for at least an hour or two. He then clinically diagnosed me with stage three chronic Lyme disease. I was so happy he recognized in me what I had seen in your film. But I wanted some confirmation that he was correct. After my blood work was done I was shocked again to see a positive result on my western blot test showing I had Lyme. This was the first positive test I had been shown after ten years of being a pin cushion. Yet I still felt I needed to temper my enthusiasm. Not only because I didn't want to be let down from this dream of having my life back, but also because any excitement would trigger anxiety for me.
In retrospect, had the first doctor who tested me for Lyme eight years ago had said, "This test came back negative, however the test is not 100% accurate so we recommend you come back and get retested in three or six months" - that simple statement could have saved eight years of my life.
So here I am today, five weeks into my IV treatment. I have a long way to go, however I am on a road that I never thought I would cross paths with. A road called recovery, and this road, though bumpy, feels so right. I cannot wait to see what is at the end of this road. I believe with all that I am that it will be a new beginning. And it all started with your film. Without it I would have never found an answer and who knows where I'd be or even if I'd be still fighting. I was so tired and so hopeless but God answered my last prayer and led me to you in an indirect way. There is no way I can repay you for the gift that you've given to me. All I can do is thank you so much for your efforts to bring awareness to this ignored disease.

RIP David Simser: The Tick Guy who loved his job

Andy Wilson — Tue, 30 Nov 2010 05:50:21 +0000

Popular Science Magazine once called “Tick Dragging” one of the top 10 worst science jobs, but anyone who has watched the documentary UNDER OUR SKIN knows that entomologist Dave Simser, PhD, really loved his work -- collecting Lyme-infected ticks around Cape Cod with his loyal dog Ishmael.

On November 26, Dave Simser, 57, died of prostate cancer in Sandwich, MA.

The UNDER OUR SKIN scene where Dave enthusiastically captures a pair of troublemaking female ticks, then names them Thelma and Louise, has been a crowd-pleaser in screenings across the country.

The crew of UNDER OUR SKIN wishes Dave’s family and friends our condolences. We remember his intellect, humor and humanity -- and his important contributions to uncovering the hidden and growing Lyme disease epidemic. Those Lyme green Converse shoes will be very hard to fill!

You can watch an excerpt from UNDER OUR SKIN of Dave Simser collecting and talking about ticks here.

Lyme disease cases double in five years

drupal_super — Tue, 04 Jan 2011 22:18:02 +0000

Since UNDER OUR SKIN has been released, Lyme disease cases have continued to rise, with the U.S. Centers for Disease Control (CDC) posting a final tally of 38,468 reported cases in 2009 [1], a 9% increase over the previous year. Over the past five years, Lyme cases increased by 94%, almost doubling from 2004 to 2009.

According to CDC epidemiologists, these reported cases are underestimated 6- to 12-fold in endemic regions due to inherent flaws in its passive reporting system. [2] Consequently, the actual number of new Lyme cases in 2009 could be as high as 461,616.

The large gap between reported and actual cases is caused by a number of factors, including:
1. Inaccurate Lyme tests [3]
2. Failure of physicians to report cases
3. A labor-intensive process that requires local health officials to contact individual physicians to confirm details of many of the case reports [4]
4. Cases rejected because they don’t fit the conservative surveillance definition of Lyme disease

The Lyme disease surveillance process was changed in 2008, with the goal of reducing the burden of the CDC/CTSE complex mandatory Lyme reporting process on resource-strapped state and local health departments. [4] Unfortunately, the resulting revision, which was held behind closed doors with no provision for public comment, did nothing to address the fundamental flaws in the surveillance criteria—it is still based on an inaccurate blood test, an outdated list of Lyme disease symptoms, and a cumbersome reporting process that places an undue burden on state and local health departments.

Instead, the CDC/CTSE revision added more complexity and less transparency to the reporting system, creating three categories for Lyme cases – confirmed, probable and suspected.

The problem with the “suspected” category of Lyme cases is that it allows state health workers who don’t have time to follow up on valid cases, with positive test results or the classic Lyme bulls eye rash, to place them in a list that the CDC never publishes. In addition, the CDC only reports the confirmed cases to the media, never mentioning the probable and suspected cases, or the fact that CDC epidemiologists say that the actual case count could be ten times higher than the reported cases.

The tragedy of this new process is that physicians make diagnostic decisions based on the CDC case numbers, and when cases in their states are underestimated, more Lyme patients will be misdiagnosed. Congress allocates research funding based on the CDC case numbers, too, and by underestimating these numbers by a factor of ten, grants will go to other diseases.

####

[1] CDC. Reported Lyme disease cases by state, 1995-2009. Reported cases in this chart include both “confirmed” and “probable” cases for 2008 and 2009.
http://www.cdc.gov/ncidod/dvbid/lyme/ld_rptdLymeCasesbyState.htm
2009 reported Lyme cases = 29,959 confirmed + 8509 probable = 38,468
2008 reported Lyme cases = 28,921 confirmed + 6277 probable = 35,198
2009 annual increase = (38,468 – 35,198)/35,198 = 9.3%

[2] CDC. Cases are “under-reported by 6- to 12-fold.” http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm

[3] Coulter, P, et. al. 2005. Two-Year Evalution of Borrelia burgdoferi Culture and Supplemental Test for Definitive Diagnosis of Lyme Disease, Clin. J. Clin. Microbiol. 41: 5080-5084. “…no single test is optimal for Lyme disease diagnosis”

[4] CDC. Burden of Lyme Reporting. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5702a4.htm
In New Jersey, for example, the health department found that each Lyme case took health officials an average of 2 months to close; 24% of Lyme cases were never closed or counted; and the Lyme reporting process in New Jersey alone required 5 full-time employees to handle.

CDC FOIA delays get under the skin of film producers

Kris Newby — Tue, 08 Mar 2011 22:29:52 +0000

On June 26, 2007, we, the producers of the documentary, “Under Our Skin,” submitted a Freedom of Information Act (FOIA) request to investigate possible conflicts-of-interest of three Centers for Disease Control (CDC) employees who control public health policy for Lyme disease. Almost four years later, we’re still waiting for this information, and we’ve just learned that our request is among the ten oldest unfulfilled requests awaiting action at the CDC’s parent agency, the Department of Health and Human Services (HHS).

(Click on the image below to see the timeline.)

The Freedom of Information Act (FOIA) is a federal law that establishes the public’s right to obtain information from federal government agencies. The basic purpose of FOIA is to “ensure an informed citizenry, vital to the functioning of a democratic society, needed to check against corruption and to hold the governors accountable to the governed.”

For the purposes of our documentary, this FOIA request is essential in answering some of the most puzzling questions surrounding Lyme disease — why has the CDC been endorsing an outdated symptom list and unreliable testing protocol on their website? Why has the CDC been underreporting Lyme cases for the last decade? Are these CDC employees really working in the interest of the tax-paying public or are they being influenced by hidden commercial influences?

Communicating the government’s point-of-view in our film was a top priority, but lack of cooperation and transparency by the organizations in charge of setting Lyme disease policy in the U.S. made this virtually impossible.

At a 2005 infectious disease conference, the director of the CDC Lyme disease group, Lyle Petersen, MD, MPH, refused to speak with us on or off camera. “Talk to media relations,” he said angrily.

When we called the National Institutes of Health to request an interview with a tick-borne disease expert, the media relations person told us, “We can only let you interview our experts if you have a broadcast date for your film.”

I explained, “But we can’t get a broadcast date for our film until we have a film to show the broadcasters.”

“Sorry, we can’t help you,” the media handler replied.

Undaunted, we flew a crew to the Montana home of retired NIH Lyme disease expert, Willy Burgdorfer, Ph.D., M.D., the discoverer of the Lyme bacterium. While setting up the cameras, an NIH representative showed up uninvited, and 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.”

That left a FOIA request as the next logical step in trying to understand the government’s reluctance to talk about Lyme disease.

So, why has our FOIA request been stuck in the system for years?

We honestly don’t know.

Initially we were told that our request for three resumes and some email records would cost $27,515 out-of-pocket, because whomever handled our request mistakenly decided that our educational film production company was a “for-profit commercial interest” that “does not publish current news of current interest to the general public.” It didn’t matter that our appeal showed that we were granted status as a non-profit 501 (c) (3) documentary producer in 2005, or that we had a website that proved that we had produced a number of educational medical films on AIDS, cancer, and dystonia.

Our request, still under appeal, has been stuck in some dark drawer in HHS or CDC, and we don’t know when — or if — it will ever be answered.

Along the way, we’ve been told that the delays are due to understaffing, year-end financial deadlines, and people taking vacation. We’ve been told that our calls remain unanswered because there’s a phone “dead zone” in the new CDC FOIA office in Atlanta. Several times we’ve been told that we’re at the top of the FOIA queue, and that our request is on the verge of being handled. When we had the president of a D.C. Lyme disease foundation ask a visiting CDC representative, Ben Beard, Chief of Bacteriology and the Lyme disease program, about our FOIA request, he said, “It is our policy not to respond to such letters. We consider the accusations in that FOIA to be slanderous.”

This week — 3 years and 8 months after our original FOIA filing — we received the first glimmer of hope in the FOIA process. The good news: HHS assures us that there will be a ruling on our appeal and fee waiver within the next six weeks. The bad news: HHS has no idea how long it will take the CDC to send us the requested files once our FOIA request leaves the appeals desk.

In the meantime, Lyme disease continues to grow at an alarming rate, doubling in the last five years. The CDC remains mum on the controversies surrounding Lyme disease, venturing out of their Ft. Collins, Colorado enclave to speak to patient groups only once or twice a year. Their website content is tightly aligned with the Lyme disease doctrine endorsed by the quasi-commercial medical society, the Infectious Diseases Society of America, and it’s unclear what personal or commercial interests ties exist between the CDC and the authors of the controversial IDSA Lyme disease guidelines, until our FOIA request is answered.

We hope someday to be able to provide answers to these questions on the “Under Our Skin” website. But until then, we continue to wait.

For a detailed timeline of our FOIA request: Film-FOIA-Detailed-Timeline

For the CDC’s Lyme disease case numbers: http://underourskin.com/blog/?p=916

For a transcript of the Willy Burgdorfer interview: http://underourskin.com/blog/?p=191

IDSA aims to censor UNDER OUR SKIN TV broadcasts

drupal_super — Fri, 29 Apr 2011 03:07:37 +0000

Open Eye Pictures has recently learned that the Infectious Diseases Society of America (IDSA) has been trying to stop the television broadcast of its award-winning documentary on Lyme disease, UNDER OUR SKIN. Working behind the scenes, IDSA officers and members have been contacting the Public Broadcasting Service (PBS), the National Educational Telecommunications Association (NETA), and local PBS stations, calling our film “dangerous for viewers” and full of “conspiracies.”

The Public Broadcasting Service (PBS) was created in 1967 to “provide a voice for groups in the community that may otherwise be unheard,” and serve as “a forum for controversy and debate” by broadcasting programs that “help us see America whole, in all its diversity.”

We are heartened that no PBS affiliate station has folded under the pressure. UNDER OUR SKIN is the first televised documentary dedicated to educating the public about the plight of Lyme disease patients, who have been abandoned by the medical establishment, in part, because of the IDSA’s flawed Lyme guidelines development process.

While the primary focus of UNDER OUR SKIN is to inform viewers about Lyme disease through the eyes of patients, it also includes interviews with several authors of the IDSA Lyme disease treatment guidelines. These authors were briefed by the IDSA vice president of communications before the filming began, and we believe these interviews accurately represent the IDSA viewpoint on Lyme disease.

UNDER OUR SKIN also shows the unfolding of the investigation into the IDSA Lyme disease guidelines by former Attorney General Richard Blumenthal of Connecticut. His final investigative report found that there was:

• Significant conflicts of interest among the original IDSA guidelines authors,
• Suppression of scientific evidence by authors, and,
• Exclusion of panel members with opposing viewpoints.

The IDSA’s suppression of dissenting views continues. This time the target is UNDER OUR SKIN. (More examples of IDSA censorship are listed at the end of this article.)

Recently, the importance of transparency and open dialogue in medical guidelines development were underscored in a report by the Institute of Medicine (IOM), “Clinical Practice Guidelines We Can Trust.” In this mandate for guidelines reform, the IDSA Lyme guidelines were called out as an example of a process gone awry:

“This case highlights the need for standardization and transparency in all aspects of systemic data collection and review, committee administration, and guideline development, so that questions about these issues do not detract from the science. [Guideline developers]… must be aware of the many, varied observers who will consider their development processes, particularly when their recommendations are likely to be controversial.”

And in a recent study in Archives of Internal Medicine, researchers found that out of 4,200 IDSA guideline recommendations, more than half were based on no more than expert opinion and anecdote, not hard evidence, reinforcing points made in our film. (See references below.)

So, as investigative news organizations and documentary film producers — with the help of the Physicians Sunshine Act — begin to shine the light on endemic commercial influences on “evidence-based medicine,” it’s a wake up call to the medical establishment to clean up their own act before attacking outside organizations dedicated to protecting the public.

In other words, don’t shoot the messenger.
____________________________________

To read more about past IDSA efforts to censor dissenting opinions:

Poses, R. (2006) “The Conflicted Defending the Conflicted: Infectious Disease Specialists’ Attack on the LA Times Goes Awry.”

Henderson CW, DeNoon, DJ. (1997) “Strange Bedfellows Damage CDC and NIH Credibility” AIDSWEEKLY Plus. Feb 3 1997.

Oransky, I. “Transparency needed in drug researchers’ finances.” Boston Globe. Oct. 7, 2006.

To read more about the flawed IDSA guidelines development process:

Johnson, L. and R. B. Stricker (2010). “The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines.” Philos Ethics Humanit Med 5: 9.

IOM. (2011) “Clinical Practice Guidelines We Can Trust.” Washington D.C. National Academies Press.

Lee, D. H. and O. Vielemeyer (2011). “Analysis of Overall Level of Evidence Behind Infectious Diseases Society of America Practice Guidelines.” Arch Intern Med 171(1): 18-22.

Frederik Joelving, Medical “best practice” often no more than opinion”,

To download a detailed history of the IDSA investigation, click here.

To read the Attorney General’s press release on the IDSA guidelines investigation, click here.

Why community screenings are still essential to turn the tide in Lyme awareness

Regan Brashear — Tue, 17 Apr 2012 01:59:56 +0000

Community screenings of UNDER OUR SKIN are an essential tool for raising awareness about Lyme and other tick-borne diseases. We have had over 1200 community screenings to date, reaching tens of thousands of people across the country, all organized by impassioned volunteers who were moved to do something to educate their community. As a result, we have received countless emails expressing how these events were life changing and even life-saving, as attendees question past diagnoses, discover they are not alone, and find resources to help them on their healing journey.

This has been a huge team effort and I would like to take a moment to express my gratitude to the hundreds of volunteers who have put in many hours of hard work over the last four years to bring these events to life. We have honored many of these Lyme heroes as UNDER OUR SKIN Angels. Be sure to read about the amazing work of our Spring 2012 Angel, Judith Weeg, founder (with Tracie Schissel) of the Lyme Disease United Coalition. There are countless more volunteers, organizers, and advocates who use UNDER OUR SKIN in their on-the-ground organizing, lobbying and educating every day. The UNDER OUR SKIN team is proud to be a part of this movement.

People have inquired lately if it still makes sense to hold community screenings now that the film has aired on public TV stations and is available via Netflix and other platforms.

As the Community Engagement Coordinator at Open Eye Pictures, I'd like to offer four reasons for why I believe that community screenings of UNDER OUR SKIN will always be critically important to the larger effort to raise Lyme disease awareness:

Community screenings build community. They create a space where people can meet others also suffering with Lyme disease, ask questions, process emotions in a safe space, and often times, form support groups or local task forces on Lyme disease in their area. They also create forums to which you can invite local politicians and medical professionals to help them comprehend the severity of this epidemic in their community.
Community screenings allow organizers and partnering groups to share vital local resources with attendees. Post-film Q&A discussions are a great way to educate about existing support groups, share prevention tips, or information on which Lyme literate doctors are practicing in your area. In fact, some of the most successful screenings have had a Lyme literate MD respond to questions after the film.
Community screenings create opportunities to reach out and inform local media about Lyme disease in your area. Many times this moves them to do more in-depth coverage of the issue which helps raise awareness in your larger community.
Community screenings, if organized well, can help raise funds for your local support group. We have recently made some changes to help make it even easier for organizations to use the film to raise money to support their own Lyme awareness efforts by selling DVDs at their events or asking for donations. See our new Fundraising Screening Package for details.

We asked a few of our volunteer screening hosts what inspired them to coordinate a community screening in their area. Here's what they said:

"It is part of our mission statement to raise awareness and this movie has been the best of the best tool for this!" J.S., Lake in the Hills, IL

"Two of my three children were sick as well as myself and my husband. I wanted to get the word out to parents about the unknown risks and dangers of Lyme and co-infections. UNDER OUR SKIN has been the perfect springboard for educating parents about Lyme, as well about why our kids are not being properly diagnosed and treated." K.F. Fairfield, CT

"In June of 2009 together with another local advocate we held a screening of UNDER OUR SKIN which drew a crowd of 150. Since that time we have had many screenings in our area over the past three years. We always ask the crowd how many people here have Lyme, and how many are just here for prevention and awareness. Up until this year our screenings have always had at least 75% of people that were affected with Lyme. This year this has changed. A higher percent of attending audience is there for prevention and awareness. I really do believe our advocating together with this remarkable documentary has totally made a difference in the education of Lyme." D.C., Groton, MA

We’d like to hear from more of you about your experiences either hosting or attending an UNDER OUR SKIN event to learn what worked well and what could have been improved at these events. Please take a minute to fill out our Host Survey or our Attendee Survey.

With the mild winter, many experts are predicting that Lyme disease may hit new highs this year. Holding a screening in your area is one concrete way you can make a difference in protecting your family and community.

Here are the 5 Basic Steps of Planning a Community Screening:

Secure a location for your event and pick a date and time.
Purchase the Community Use DVD (which include rights for free public screenings) or upgrade your Home Use copy.
Decide if you will have speakers at your event and confirm that they can make it.
Let us know your plans at Open Eye Pictures so we can help publicize your event.
Publicize the event as widely as possible.

We have many online resources and tools that can help make this process very straightforward--sample press releases, public service announcements, flyers, an email-able version of the film trailer, and a 9-page Event Planning Guide which includes a step-by-step description of how to plan a successful event. If you like, we can connect you with a screening mentor, a past volunteer host who can share their experiences with you.

“Thank you so much for all you've done to bring awareness to this disease! This documentary literally saved my life!” M.B., Nashville, TN

“Your movie brought me back into action. It has inspired me and given me hope. With your brilliant film enabling others to see and feel the plight of the Lyme patient and to question the horrible corruption that exists within our medical system, finally, finally I have hope that something will change. (In fact, you can literally feel it changing!)”L.S., Cary, GA

“There are no words to express the gratitude I feel for exposing the Lyme disease debate. You have brought hope to many people who have reached a point where they have none. I am very ill right now and your documentary has given me some hope that I can get better.” C.T., Virginia Beach, VA

These words of gratitude and hope are meant for the hundreds of volunteer hosts and organizers who have organized film screenings, just as much as they are intended for the filmmakers.

You CAN change lives! I hope that you will take the opportunity to host an UNDER OUR SKIN screening today.

Sincerely,

Regan

Regan Brashear
Community Engagement Coordinator
regan@openeyepictures.com