'Skin' deep

AS ANY Lyme disease sufferer can tell you, stress makes the symptoms worse.

This is a problem, because a Lyme diagnosis will send you straight to the Internet for research, and there's nothing more stressful than reading about Lyme on the Net.

Online, you will find the kind of angry debate over disputed science that, in our combative age, dominates discourse among patient advocates and factions of the medical establishment.

The most basic questions inspire the deepest disagreement.

Can your Lyme become a chronic disease?

Might you need more than one course of antibiotics?

You seek out the big brains, but they are split. One Ivy League institution says no, another says yes. The International Lyme and Associated Disease Society says yes, the Infectious Disease Society of America says no. In fact, the IDSA says "Hell no," although it may completely change its mind later this year, as did the Mayo Clinic.

What's a patient to do?

Here's a good place to start: tomorrow night's 7:30 screening of "Under Our Skin" at the Bryn Mawr Film Institute, 824 W. Lancaster Ave., Bryn Mawr.

It's a documentary that covers the back-and-forth about how to view and treat the disease, an epidemic (20,000 to 60,000 new cases per year) that's growing by leaps and bites as the spread of disease-carrying ticks continues unchecked.

"Skin" is squarely on the side of patients and Lyme specialists who believe the disease can become chronic and require long-term and varied antibiotics - especially if untreated in early stages.

It follows several patients (including one young man from Coatesville) with long-term infections, showing the viewer what the disease can look like and feel like in its most entrenched form.

As we see in "Skin," the disease can look and feel like just about anything. That's why it is often misdiagnosed and untreated, leading to the most persistent, hard-to-treat form.

On the other hand, there are those who say there is no hard-to-treat form of Lyme. The IDSA says hard science - double-blinded, placebo-controlled studies in humans - does not support the idea that viable Lyme bacteria can beat a routine course of antibiotics. And it's the IDSA that publishes guidelines most physicians follow. Those who do not can be targeted by medical licensing boards, which is what happens to one physician featured in "Skin," allegedly for treating patients who did not have the disease.

A big bone of contention in the Lyme debate, as "Skin" shows, is the way groups like IDSA's Lyme panel are composed. Many of the expert panelists are expert because they hold patents on Lyme tests or treatments - creating, detractors say, obvious conflicts of interest.

So thought Connecticut Attorney General Richard Blumenthal, who sued the IDSA, as noted in the film. "Under Our Skin" was completed before the settlement, one that disbanded the old IDSA Lyme board and directed it to re-form without doctors with financial ties to Lyme-related companies. The new board heard testimony from ILADS and others, to be considered before new guidelines are issued later this year. Patient advocates are hopeful the guidelines will be liberalized.

But not optimistic.

"They seem to be maintaining a pretty hard line after the hearings were closed," said Kris Newby, who spent several years researching Lyme for "Skin."

Patient advocates say there is a great deal at stake, since Lyme specialists in the ILADS camp want the latitude to extend antibiotic treatment in ways they believe are essential to preventing later-stage problems, which can be severe.

The screening of "Under Our Skin" will be followed by a Q&A with panelists, including Chester County Lyme physician Anne Corson, who does not mince words when it comes to the current IDSA guidelines.

"The IDSA guidelines are useless," said Corson, a plainspoken woman who says she prefers to treat patients until they get better. "They've been the focus of a tremendous amount of criticism by the ILADS. We've presented reams of scientific proof of our viewpoint, supporting the guidelines we use in treating these ailments.

"For me, working in the trenches, taking care of sick people in Southeast Pennsylvania, which is the epicenter of this disease, I use the ILADS guidelines. The IDSA does not help people with the acute and chronic stage of the disease."

The IDSA argues there is still no ironclad study in human Lyme patients proving post-antibiotic viability of Lyme bacteria, and points out that any long-term antibiotic treatment can be dangerous.

ILADS counters that there are studies that show it persists in other mammals, and cites scientists on the frontier of microbiology are learning that the Lyme microbe is an unusually tough little bug.

It's the Navy SEAL of bacteria - unusually agile, heavily armored, able to disguise itself, conceal itself, communicate with other bacteria, even swap tools on the fly to help it evade and defeat the immune system. And it's a shape-shifter - attacked by one antibiotic, it can transform into the kind of bacteria that can only be killed by a different class of drug.

And Lyme is just one of several Lyme-like infections you can get from a tick, each infection best treated by a different drug.

It is also constantly mutating (it likes to hang out in ticks with other kinds of bacteria and swap attributes, improving its nastiness).

"Skin" documentarian Andy Abrahams Wilson has talked with Lyme physicians who believe that different symptoms in different areas of the country reflect different strains of infection.

"In Maryland, the predominant symptoms are fatigue and depression. In your area, the Philadelphia area, it's often rage," he said. (Of course that might not be Lyme. It might be Brad Lidge.)

You can find updated information on the IDSA/ILADS positions at www.underourskin.com, where you can also purchase the DVD. Testimony presented to the new IDSA's board can be found at the society's Web site, www.idsociety.org.

Corson said you can go to lymepa.org to download a booklet covering the nature and treatment of Lyme.

And science writer Pamela Weintraub's book "Cure Unknown" provides a readable, comprehensive recent history of the disease.