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Once bitten



Mandy Hughes got married in Key West in June 2005. Film footage from that ceremony shows her thin but smiling, walking around in her wedding dress, apparently happy and healthy.

But Hughes says it took a week of stocking up on fluids and sleep to have enough energy for the day. And other footage, shot perhaps a few months afterward, shows Hughes bent over and staggering at her Orlando home, writhing on the floor and slurring her speech, apparently in pain and barely able to move.

Those images are juxtaposed in the movie Under Our Skin, which features Hughes and a parade of others with a similar list of symptoms. All say they suffer from chronic Lyme disease, and complain repeatedly that most doctors refused to properly diagnose or treat them. Filmmaker Andy Abrahams Williams leans heavily on the suggestion that a cabal of medical authorities and pharmaceutical companies conspired to suppress these stories and clamp down on any doctor who doesn't follow the party line.

Those images are juxtaposed in the movie Under Our Skin, which features Hughes and a parade of others with a similar list of symptoms. All say they suffer from chronic Lyme disease, and complain repeatedly that most doctors refused to properly diagnose or treat them. Filmmaker Andy Abrahams Williams leans heavily on the suggestion that a cabal of medical authorities and pharmaceutical companies conspired to suppress these stories and clamp down on any doctor who doesn't follow the party line.

Most doctors, however, backed by standard-setting professional organizations and the Centers for Disease Control, argue that Williams and his subjects are imagining conspiracies to support their belief in a condition that doesn't really exist — at least not in the way it's presented in Under Our Skin.

"I think our film proves that chronic Lyme disease does exist, and treatment for chronic Lyme disease does help," Wilson says in an interview on the movie DVD.

His documentary has won a raft of prizes at film festivals. It's playing at libraries and independent theaters across the country, often backed by local Lyme activism groups.

But Wilson's assertion, and the whole controversy over Lyme disease, hinges on a question of both hard science and fuzzier philosophy: What constitutes proof?

The medical establishment insists that such proof only comes through detailed, documented cases, verified by other researchers, over a considerable period. It's a long process with many false starts and frustrating caveats, but to rephrase the common aphorism on justice, the wheels of medical science grind slowly.

For patients driven by pain and disability to seek an immediate answer, however — and for filmmakers with 103 minutes to make a case — the standard is satisfied with a large collection of anecdotes and a few maverick doctors, inferences drawn from tenuously connected facts and assertion of deeply felt belief.

Hughes grew up in Maryland, within the prime area for Lyme cases. She was bitten by a tick and developed Lyme in 1996, when she was 19. She took pictures of the resulting red-ringed bite mark.

"I was treated with two weeks of antibiotics, and everything was considered cured, or OK," she says.

In 1999 she moved to Orlando to work as a trainer at SeaWorld, a "very physical" job. Around the same time Hughes started having headaches and frequent fatigue. She went to doctors and had her thyroid checked, but nothing turned up. Her symptoms grew worse: weakness of facial muscles, slurred speech and loss of motor skills, progressing to dizziness, fainting and forgetfulness. Sometimes Hughes got lost on her way home from work.

"I was diagnosed three separate times with MS," Hughes says. The idea of multiple sclerosis was dropped after MRIs showed no associated brain lesions, but doctors were still baffled.

Hughes quit SeaWorld when she could no longer do the work, and did what part-time jobs she could. For the past five years she's worked for the YMCA.

"They've been really great," she says.

Hughes thought her problem might be Lyme disease again; her aunt, who also had the disease, had similar symptoms — but Hughes' were worse. Two doctors told her that Lyme doesn't recur, but a third, in California, recommended Dr. Joseph Jemsek, who ran a clinic in North Carolina. She went to see him in 2005, and he agreed with her self-diagnosis.

"I credit him with saving my life," Hughes says.

In the film, Jemsek predicts that Hughes would need antibiotics for six-to-eight months. He actually put her on a year of heavy intravenous antibiotics, followed by four more years of oral drugs. The recommended dose for such strong antibiotics is only 30 days' duration, Hughes says.

She says it took eight months of antibiotics before she felt any stamina returning. Not until two years after she started treatment did she feel roughly normal, able to work 20 hours a week and go to the grocery by herself.

Five years on, Hughes is off medication entirely and has no lingering symptoms except fatigue and aches if she's otherwise ill or stressed. She's a full-time nursing student at Valencia Community College, and works out four or five days a week. She regularly goes to Lyme disease-related events where the movie's shown. When she talked with Orlando Weekly, she'd just returned from a 350-person gathering in Maryland, and had another scheduled the following weekend.

"For a while, I was doing an event every month," she says.

While still searching for a diagnosis of Lyme disease, Hughes did an Internet search for more information and found that Williams was just starting a documentary on the subject. She offered to be in it, and he started filming her in 2005, before she saw Jemsek.

"It was extremely uncomfortable at times," Hughes says. Still, it doesn't show her at her worst, when she almost died in September 2005, she says.

Some others featured in the movie tell roughly similar stories. In the post-filming interview, Williams and senior producer Kris Newby said "almost all" of the subjects got better over the three-year span of filming. At least one other is now off the powerful antibiotics, and another has chosen "alternative treatments."

There's no real debate over the basic facts about Lyme disease. It's caused by a bacterium related to syphilis, and is primarily transmitted to humans by tick bites. Its symptoms are varied enough to be confusing, mimicking flu and arthritis, causing skin rashes, headaches and muscle spasms.

Occasional cases of Lyme disease were known in Europe for decades, but it was only identified and named in the United States in 1975 from cases in Lyme, Conn., near the epicenter of subsequent cases. Three years later, scientists established that it was carried by ticks, but the bacterium that causes Lyme wasn't identified until 1982.

Cases of Lyme have been identified in all 50 states, but almost all are clustered between northern Virginia and Maine, with a second patch covering Wisconsin and Minnesota, according to the U.S. Centers for Disease Control. The CDC lists just 758 cases in Florida between 1999 and 2008; that's only three-tenths of one percent of cases nationwide.

Thirteen states account for 98 percent of Lyme cases, according to Dr. Paul Mead, a CDC epidemiologist. And even the other two percent can be misleading: case reporting is based on patients' residence, not where they became infected. A Wyoming resident who caught Lyme while visiting Pennsylvania would be recorded as a case in Wyoming.

What's controversial, and hence the subject of Under Our Skin, is whether Lyme disease can persist for years, surviving the standard doses of antibiotics to cause chronic, debilitating symptoms: fatigue, pain, paralysis, even brain damage. A few doctors featured in the movie assert that chronic Lyme needs to be treated with long-term doses of powerful (and expensive) antibiotics. That's why Hughes is shown with an injection port directly into her chest.

The movie covers the North Carolina medical license suspension of Hughes' doctor, Joseph Jemsek. He moved to South Carolina, then opened his clinic this January in Washington, D.C. But his website includes this disclaimer: "The content contained in this website is based on the opinion, clinical experience and clinical findings of Dr. Joseph Jemsek and the Jemsek Specialty Clinic. It may not reflect the opinion of the general medical community, as opinion within the medical community is deeply divided regarding the best approach for treating Lyme disease."

Newby, Under Our Skin's senior producer, argues that the "divide" sprang from a conspiracy financially backed by big pharmaceutical firms and insurance companies, and promoted by greedy researchers who want to profit from new Lyme treatments. She appears in the movie herself, but in the body of the film is identified only as a "science writer," one of several touted as professional experts on the disease. Credits and interviews tell that Newby was the film's major researcher, and a patient treated for "chronic Lyme" herself.

"It took 10 doctors and $60,000 and a year to get properly diagnosed," she says.

Newby's research is artfully put together: The film juxtaposes lingering shots of its main subjects struggling through routine tasks with rapid-fire, scary-sounding blurbs. Most of the allegations and statistics thrown out, however, lack context. They serve to startle and impress rather than provide real perspective.

Perspective is just what the CDC aims to provide, for general public and health care providers alike, through its research and collation of results on the whole spectrum of human health. Lyme disease is a prominent feature on the national health landscape, CDC researcher Mead says. "It's the number one vector-borne disease in the United States, and we certainly take it very seriously."

But the very term "Lyme disease" covers a lot of territory, he says. It's well recognized that many diseases may leave some lingering "derangement" of the immune system, which can cause disease-like effects. A "subset" of Lyme patients do have persistent symptoms after getting the recommended treatment, but the key question is whether they actually have continuing infections — live Lyme germs — that need further antibiotic treatment.

"There's very little credible evidence that that's the case," Mead says. In fact, several controlled tests showed that people with such symptoms didn't get any better with strong antibiotics than with placebos, he notes.

Mead says the medical community doesn't dispute that these people are suffering from some problem, and he can see why they feel strongly that they need more therapy. At some point, a body of medical evidence may accumulate that points to that need.

"But so far, all of the evidence stacks up on one side of it," Mead says. "There's great power, and great danger, in anecdotes."

The danger comes from aggressive treatment for infections that patients may not have. Indeed, side effects for doxycycline — the antibiotic Hughes took in large doses — include many of the symptoms she attributed to her near-death from chronic Lyme in September 2005, a few months after she started Jemsek's treatment.

If there's a villain in Under Our Skin, it's the Infectious Diseases Society of America. In 2006, that association of medical doctors and researchers published guidelines for standard treatment of Lyme disease, written by a 14-member panel. The filmmakers target those guidelines — which argue for a short course of antibiotics and don't recognize Lyme as a chronic condition — as the epitome of corruption.

"It is a dramatic and provocative film, there's no question about that," says Diana Olson, IDSA vice president of communications. "Obviously, we are very disturbed and concerned about the misleading way that IDSA is portrayed in the film."

Chief among those is the allegation that doctors on the guideline-writing panel had secret financial ties that influenced their decisions.

"That's just simply not true. No one who served on that panel benefited, or stands to benefit in any way, from our guidelines," she says. "If anything, the opposite is true."

The IDSA's recommendations are for generic tests and short courses of generic drugs, which would — if any corruption allegations were true — make far less for researchers than the large quantities of expensive drugs that "chronic Lyme"-treating doctors use, Olson says.

Olson echoes Mead in saying that the IDSA's members don't doubt that those people are really sick and suffering — just not with Lyme disease, so the real concern is for accurate diagnosis. They're also concerned about long-term prescription of heavy-duty antibiotics.

"Antibiotics are serious and powerful drugs," Olson says. They're "miraculous" when used right, but are often overused, leading not just to serious side effects for the individual patient — including potentially lethal diarrhea — but also contributing to the rise of drug-resistant bacteria.

"That's really, for us, the big concern," she says.

One of Under Our Skin's happy-ending moments is the announcement that Connecticut Attorney General Richard Blumenthal had launched an investigation of the IDSA's Lyme guidelines. That ended with a May 2008 settlement, which the IDSA announced under the headline "Medical Validity of IDSA Guidelines Not Challenged."

Blumenthal's office spun it differently. He said the IDSA didn't check its panelists for financial conflicts of interest, and "improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science."

But he stressed that the core dispute was about the panel process, not the underlying science, and thanked IDSA for its cooperation in his inquiry.

The investigation brought no actual penalties or restrictions on the IDSA, but the group agreed to "a one-time special review of the Lyme disease guidelines."

That review is now underway. An ombudsman had the specific task of checking out new panelists' financial disclosure statements, Olson says.

The new panel has held hearings with proponents of various opinions on Lyme, and is taking public comments. It's also reviewing numerous studies published since 2006, she says.

"We are hoping that they will be releasing their final report very soon," maybe in a couple of months, Olson says.

In the meantime, the IDSA's support for its 2006 treatment guidelines is uncompromising: "The IDSA Lyme disease guidelines recommend against long-term antibiotic therapy, an unproven and potentially dangerous treatment. A small group of physicians outside the medical mainstream and their patients endorse such long-term treatment, despite the compelling medical evidence that it is ineffective and can have serious, life-threatening complications — and, furthermore, is extremely expensive."

Olson herself says anyone who thinks they have Lyme disease shouldn't get their medical advice from a movie, but from "credible doctors" who treat a variety of infectious diseases.

No matter who's doing the treatment, a final complication is how to determine if a patient really is infected with Lyme bacteria. That makes it doubly difficult to determine who's right in arguments over the existence of chronic Lyme infection.

One researcher in Under Our Skin alleges that existing tests for Lyme infection are only about 50 percent accurate, and Dr. Kerry Clark says that's probably not far from the truth.

He's an associate professor of public health at the University of North Florida in Jacksonville. Clark says he's not a physician, but is a researcher working on DNA tests to identify Lyme disease.

"My human testing has been mostly on patients who have been sick for months or even years," he says. Of about 200 he's tested, more than 80 have had Lyme infections of long duration. Clark believes that's because the disease's varied symptoms make it hard to diagnose early, so lots of Lyme patients go without treatment for long periods. That long-term infection makes it much more difficult to treat, he says.

Clark says he has met Hughes and several of the other patients featured in Under Our Skin, but has never tested any of them for the disease. He knows some of the doctors whose work is promoted too, but not closely.

Clark is a board member of the North East Florida Lyme Association, which has shown Under Our Skin several times in libraries and at other public gatherings.

"I've seen it probably a dozen times," he says. Another free showing is set for 4 p.m. April 9 at the University of North Florida.

Existing Lyme tests are very reliable, but not very accurate, Clark says: They produce very few false positives — so a positive test can be relied upon — but often miss real infections, so a negative test doesn't guarantee the absence of Lyme disease.

Yet in the South, some doctors won't believe test results even when they're positive, he says.

Clark says his research shows that Lyme disease isn't nearly as rare in the South as it's believed to be. He's found "dozens and dozens" of cases in Florida and other southern states.

"Probably it's significantly under-recognized and under-reported in the southern United States," he says. A number of patients have told him that they suspected having Lyme disease, but doctors told them it didn't exist where they were.

Not much research has been done in the South on other infections that can accompany Lyme disease, but there's probably more of those than are usually realized, Clark says.

"I do believe that that can partially be responsible for some of the symptoms," he says.

Clark agrees that even after a Lyme infection is gone, it can probably leave permanent nerve or joint damage.

"Some symptoms could be from that," he says. "But the evidence I'm finding among a pretty high proportion of (people with) ongoing symptoms is that they actually have ongoing infections."

That raises the question of whether even long-term treatment will do any good, if the infection isn't caught early, Clark says.

"There may be some people that you just can't cure, no matter how long you treat them."

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