SURFING WEB TO SAVE LIVES : PATIENTS JOIN NET COMMUNITY TO LEARN ABOUT LATEST RESEARCH AND SEEK SUPPORT THEY NEED.

Byline: Elizabeth M. Cosin Daily News Staff Writer

A few weeks ago, June Sherman typed ``dysautonomia'' into her Internet search engine as a lark. She didn't expect to find anything about a disease so rare that fewer than 500 cases are registered worldwide.

But she got some ``hits,'' Internet parlance for finding World Wide Web pages containing a specified word, and moments later, Sherman, who has suffered from the disease since she was born, was staring at the familial dysautonomia home page, which had information on the cause, symptoms and treatment of the disease, which strikes only people of Eastern European ancestry.

There were support group listings and information on where (and who) to call for help. And there was even a place for up-to-date research findings and where to look for more detailed information.

``I was shocked,'' says Sherman, 33, of Woodland Hills. ``I didn't expect to find anything, and all this information just came up on the screen.''

What Sherman also did, by accident, is find herself among a growing number of Americans who are becoming medical detectives on the Internet. For them - many who suffer from incurable and rare diseases - surfing the Web is a serious pursuit, one that quite possibly could save or extend their lives.

Bruce Binder believes it saved his. The 51-year-old computer consultant from Redondo Beach found a little-known treatment for his prostate cancer by researching his illness on the Internet.

``I probably wouldn't be here today without the Internet,'' he says. ``(It) saved my life.''

Patients aren't the only beneficiaries of the information superhighway's ER. Doctors, too, are making use of the ease and availability of new research and the ability to contact colleagues and exchange information.

``The Internet has caused a revolution in the delivery of health information to consumers,'' says Dr. Tom Linden, co-author of ``Dr. Tom Linden's Guide to Online Medicine,'' (McGraw-Hill; $17.95).

``It's changing the role of doctors and patients,'' he says. ``Doctors are becoming interpreters rather than disseminators. You can find information about practically every kind of medical problem on the Internet if you know what to look for.''

Many universities have sites for their medical research centers and hospitals. And independent doctors, medical groups and hospitals also maintain home pages and Web sites.

On top of that, there are numerous places to get advice or even choose a doctor.

One example is a Web site by Dr. Thomas Weill, a San Francisco-based physician, called ``Ask Dr. Weill'' (www.drweil.com) where he gives advice on natural treatments for common ailments.

Doctors can take part in special confidential message boards, create their own Web sites and talk to patients and colleagues about the most up-to-date information and research.

``It's been of tremendous use to me, particularly in searching medical databases,'' says Steve Teitelbaum, a Santa Monica plastic surgeon who uses the Internet to research papers. ``You really can't do a better-uality research. All you have to do is push a button and you get what you want.''

At least four books have been published in the last year - including Linden's - to help direct computer users to the vast medical resources appearing on the Internet. There are thousands of sites, from the simple to the complex, covering issues as mundane as flu shots and as exotic as, well, dysautonomia.

The Internet has other advantages, chief among them the ability of patients to ask for medical advice on delicate subjects they might not feel comfortable discussing with a physician in person.

Support groups number in the hundreds, though doctors and online experts warn their reliability can depend on who is giving the advice.

``Someone claiming to be a doctor might really be a 12-year-old,'' says Linden, who has been an on-air medical reporter, anchor and editor. ``You have to be careful, and you have to use the same common sense you would in deciding the validity of any information, whether you get it from TV or the newspaper or your doctor.''

While doctors admit Binder's experience is rare, they say there's a lot to be gained by people who want to know more about whatever ails them.

The Shermans are well-versed on the family illness, having lost two other children to the genetic disorder that impairs the central nervous system. They get reams of literature in the mail and take part in support groups.

Also called Riley-Day syndrome, dysautonomia sufferers can have a variety of symptoms - from spinal curvature to stunted growth - and most can't shed tears or feel pain in some parts of their body.

June has many of the symptoms. She is smaller than normal, walks with a limp and has developed an ulcer on one eye because of the friction caused by her inability to shed tears.

If both parents carry the gene, they have a one-in-four chance of passing it on to their children.

June's older, healthy brother Harry had just been married, and the Shermans wanted to know if there was a way to test husband and wife for the gene. June found it on the Internet.

June spends hours surfing the Net from her home computer.

``It's a relief to us, of course,'' says her mother, Rina, who says her son and daughter-in-law plan to have the tests done. ``We learned on the computer that families with history of the disease can get this test. Now we can hopefully know for sure.''

Binder's situation was also serious. When he was diagnosed with cancer in 1993, Binder's doctor gave him two choices - radical surgery or radiation treatments - strongly recommending the surgery to remove his cancerous prostate. Without it, he would almost certainly die. With surgery, the then active and healthy 48-year-old would spend his life either incontinent or sexually dysfunctional or both.

Binder says he was ready to let nature - and the cancer - take its course. That was until his search of the Internet found out about cryosurgery, a little-known procedure where doctors kill cancer with subfreezing temperatures.

``I would have let myself die,'' says Binder, who three years after the procedure remains cancer free. ``I can't say that 100 percent, because if push came to shove, I might have caved in and had the surgery. But at the time I wasn't willing to face the surgery.''

Three years ago, the Internet wasn't yet a household word when someone told Binder, who had been working with computers for 30 years, that CompuServe had a cancer forum. He logged on and found that someone had saved three years of bulletin board messages. He spent one Sunday printing out 400 pages of messages and postings. His wife, Elena, who is a writer, helped him sift through them.

``We got responses to our inquiries that very day,'' says Binder, who was the very first patient who underwent the procedure under a program in Santa Monica that was set up by Dr. Stuart Fisher. Binder also got to talk to patients who had traditional prostate surgery.

``People on the Internet were so friendly and helpful I couldn't believe it,'' he says. ``Plus I got 100 percent confirmation from people who had the operation and weren't happy with it. It was all I needed.''

Binder was lucky, say experts, to find what he was looking for so quickly, but he also had the advantage of being computer literate and determined. But weeding through 400 pages of medical messages and mumbo jumbo isn't for everybody.

Building a good search strategy is important, something books like Linden's are designed for. Experts recommend sticking to Web sites produced by universities and hospitals and being wary about those where the expertise of the advice can't be verified. All and all, they say, it's hard to go wrong.

``I don't think the information on there is any more inaccurate than any other source of medical information,'' says Teitelbaum, the plastic surgeon. ``I think the overall quality of medical education and advertising in general is hit and miss and it can be difficult distinguishing the good from the bad.''

In general, experts say, work with - not against - your doctor, but don't be afraid to find another if yours won't listen to what you've come up with.

Binder did, and three years later, he says it's as if nothing happened.

``The Internet is going to change the world,'' he says. ``It already changed my life.''

CAPTION(S):

4 Photos

Photo: (1--Cover--Color) The doctor is in ... cyberspace 

(2) Dr. Steve Teitelbaum

on using the internet for medical research

Gus Ruelas/Daily News

(3) June Sherman, 33, who suffers from dysautonomia, keeps up with research on the rare genetic disorder via the Web. ``I didn't expect to find anything, and all this information just came up on the screen,'' she says.

(4) While exploring the Internet, Sherman, left, playing Scrabble with parents Shel and Rina in their West Hills home, discovered a way to test other family members for the gene that can cause her rare condition.

Tina Gerson/Daily News