Who were all the people crammed into Volunteers Hall last Thursday night? One was Ken, who recently found two ticks crawling on him. Another was Karen, who had Lyme disease three years ago and is now concerned for her children. A man in the front row said he had Lyme three times. He was topped by the woman next to him, who had it five times. Behind them was a woman worried about her daughter, who was diagnosed with Lyme the day before.

They all gathered on the top floor of the Harvard Public Library at 6:30 p.m. to watch a Lyme disease documentary called Under Our Skin, and to listen to a panel of experts invited by the Harvard League of Women Voters and the Board of Health. The movie, created by Open Eye Pictures, focused primarily on the controversy surrounding the diagnosis and treatment of the disease. Besides presenting the issues, it showed a handful of people who are living with the disease, and the plight of doctors who try to help them.

The panel included Sheila Statlender, Ph.D., a clinical psychologist practicing in Newton and Cambridge; Dr. Luz Jacqueline Ruiz, a specialist in Lyme disease at Nashoba Valley Medical Center in Ayer; Carol Savage, MD, who has a family practice in Harvard; and health advocate Donna Castle.

Attendees learned that Lyme disease is caused by Borrelia burgdorferi, bacteria similar to syphilis. Willy Burgdorfer, Ph.D. discovered it in the late 1970s while investigating a cluster of arthritis cases around Lyme, Conn. Since then, entire families and neighborhoods have been debilitated. Here in Massachusetts, the Lyme Disease Association indicates that 2,988 cases were reported in 2007, more than double that of 2006.

Many attendees were concerned about preventing the disease, and the panel agreed that avoiding deer ticks was best. Methods include wearing long-sleeve shirts and long pants tucked into socks. After coming in from the yard, remove clothes and toss them in the dryer. Then perform a tick check. Dr. Savage suggests that kids learn to check themselves, and that parents do it to each other, perhaps by candlelight with a glass of wine.

Ticks are sensitive to dryness, so prune shrubs and put a gravel or mulch barrier between the woods and your yard. Birds can spread the disease, so get rid of feeders. And beware of activities like carrying firewood and jumping in leaves. Yards can also be sprayed for ticks.

But how do you know if you’ve contracted Lyme? According to Dr. Statlender, it can first show up as flu symptoms, fatigue, and pain that seems to migrate from one set of muscles or joints to another. There may also be a rash, which is sometimes shaped like a bull’s-eye.

If you think you have it, visit a doctor immediately; the earlier Lyme is detected, the better. Ruiz says that based on a ‘clinical diagnosis,’ which includes checking for the symptoms above, and whether you’ve been exposed to infected ticks (which includes anyone not living on the moon), you may be given a blood test.

Patients are initially given the ELISA (Enzyme-Linked ImmunoSorbent Assay) test, which checks for antibodies produced to fight the bacteria. But Statlender says that this indirect method is flawed, and a large percentage of people have false negatives. A more reliable test, the Western Blot, is available, but most doctors only order it for patients who test positive to the ELISA. If, through this gamut of tests, you continue testing positive, you will be granted a 21-day prescription of Doxycycline.

Concerned and confused? You should be. The documentary states that this system of testing is based on guidelines produced by the Infections Diseases Society of America (IDSA), and was designed to guard against over-diagnosis. It also suggests that the people who wrote those guidelines were influenced by commercial interests and insurance companies. Connecticut Attorney General Richard Blumenthal has filed an anti-trust suit against the IDSA.

For now, insist that your doctor perform a Western Blot test, even if the ELISA is negative. If (s)he refuses, try a different doctor. Also, Ruiz indicates that some blood labs are better than others at interpreting results. So ask your doctor where the test kits come from. She recommends IGeneX in California.

You absolutely want to avoid getting chronic Lyme, which occurs if the bacteria stay in your system longer than several months. People shown in the film suffered from severe arthritis, as well as lost motor control, vision, and brain function. They were forced to travel hundreds of miles to find ‘Lyme literate’ doctors who will treat them.

One man’s medicine bottles completely covered the floor of his apartment. His treatment has cost hundreds of thousands of dollars, which could have been prevented by a $75 bottle of Doxycycline prescribed in time.

Everyone was asked to leave at 9 p.m.; many left grumbling that their questions were left unanswered. One message was clear, though—people suspecting Lyme need to be their own advocate.

For more information, check the website www.ilads.org. And the panel strongly recommends the book, Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub.