A year after being diagnosed with Amyotrophic Lateral Sclerosis, Sue Zuck of Middlebury, Vt., couldn't button her blouse, walk without a leg brace or speak without sounding like a woman well beyond her 54 years.

And the future didn't look particularly encouraging.

"With ALS, the mind is totally fine, it's almost never affected," said Zuck, who once ran a country inn in Killington with her husband. "You just become closed in, eventually losing all voluntary muscle control. There's no cause and no cure. Some people die within a year and some live for 10 years."

So Zuck felt like someone had thrown a lifeline when other ALS patients began spreading word on an Internet message board about a new treatment in Atlanta. Based on results from studies in mice, Dr. Mitchell Ghen was infusing umbilical cord stem cells into patients with ALS, also known as Lou Gehrig's disease.

According to Ghen's Web site, "If the results are similar to the animal studies, if and when the procedure is successful in humans, they (sic) may be a significant delay in the progress of the disease and possible improvement in current disability."

Zuck, who is watching herself deteriorate while taking the only medication now on the market for ALS, knew she had to try it.

"We people would be the guinea pigs," she said. "ALS patients are trying to come up with answers because researchers are too slow. And one thing people with ALS don't have is time."

Zuck read everything she could about stem cells and closely followed postings on the Internet message board from early patients of Ghen's.

"Some saw no effect, but some had amazing results," Zuck said.

Her personal physician in Vermont warned her the treatments were untested on humans. Her husband of 31 years understandably balked at Ghen's fee of $25,000. "But I just told him, I have to try this," she said.

So in January, the couple traveled to Atlanta, settled into a Holiday Inn near Ghen's office at a special rate of $69 a night, and headed for the first of three transfusions.

The treatments began Friday evening, after Ghen's regular practice treating cancer patients was closed for the day. Zuck said she and two other ALS patients, one from Maine and another from Portugal, sat in leather recliners while the doctor, a physician's assistant and two nurses administered the first transfusions.

"We got three bags the first day and the cord blood was fresh, from births that week at a hospital in Orlando," Zuck said. "They were always checking the bags, because sometimes the stem cells would get clogged and clump up. The only discomfort was when the needle was in my hand and the cells backed up, so they moved the needle to my arm."

On Saturday and Sunday, Zuck and her fellow patients returned for more stem cells, these frozen, during up to five hours of transfusions. One of Ghen's staffers gave inspirational talks during the treatment. Ghen and his assistant stopped by the hotel during the evening to check on their progress.

"I had never felt so cared for in my life," Zuck said.

The only incident that gave her pause was during the preliminary interview, when Ghen was reviewing the protocol, possible side effects and repeating that there were no guarantees from the treatment.

"He said he didn't know how long the effects of the transfusion would last or if it would need to be done again," Zuck said. "My husband and I both looked at him and said, "We're not rich people and this is very expensive.' He said he was trying to get money for people to repeat the treatments."

Since returning from Atlanta, Zuck has had blood, muscle strength and breathing capacity tests taken monthly by her local doctor, with the results forwarded to Ghen.

"All Dr. Ghen is hoping for is a slowing of the progression," Zuck said. "I hoped it would give me more time so maybe there would be something else."

She was encouraged when her son, who lives out of state, said her voice sounded stronger on the telephone about a month after the treatment. And, strangely enough, she felt like she could kiss better. "My pucker in stronger," she said in late March.

But by late April, there was little to report. "I seem to be losing a bit of ground," she wrote in an e-mail. "But even if I didn't have a positive response, my whole outlook changed after this stem cell infusion. All the people in Atlanta were so positive and excited about stem cells it got me positive and excited and hopeful."

Zuck and several other ALS patients are upset Ghen's treatments ended in the wake of an FDA investigation. Ghen's lawyer, Richard Jaffee of Houston, said 50 to 60 patients were awaiting treatment when Cryobanks stopped the flow of stem cells.

"Ghen is a maverick," Jaffee said of his client, who he said is the subject of an ongoing criminal investigation. "He was doing cutting-edge medicine."

Jaffee said his client had secured legal opinions and a written statement from the FDA saying he did not need to file an investigational new drug application (IND) before treating ALS patients with cord blood.

"Now they're (the FDA) disavowing that," Jaffee said, adding that conducting such research under an IND application would be too expensive for a small practitioner like Ghen.

Sharon Hesterlee, director of research for the Muscular Dystrophy Association in Tucson, Ariz., said her group is soliciting researchers willing to conduct a cord blood trial on ALS patients under FDA supervision. MDA, which will fund the trial, hopes to start with about five patients and expects the cost to be up to $200,000. There will be no charge to the patients.

Hesterlee, whose group heard complaints from ALS members after Ghen's treatments were discontinued, criticized the Atlanta doctor.

"He may have been legitimately trying to help people but in an irresponsible way that was benefiting him financially," she said. "The responsible thing to do is an objective study then publish the results. But calling patients to see how they're doing is not an objective study."

Zuck understands the criticism, but has little time for long-range studies.

"When you have nothing to lose, it changes your whole outlook," she said.

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