The twitching started in 2004, when he and his wife were building their three-acre countryside dream house in Ontario County. It was the slightest of movements in Derek Van Wyk's left index finger, and he chalked it up to stress.

But over the next several months, the twitching climbed through his hand, up his arm, then jumped to his right side — and spurred a five-year search for answers. That search will take the 36-year-old Farmington man to India this summer for an experimental embryonic stem cell transplant that holds no guarantees but all the hope he could find.

Van Wyk learned about Lou Gehrig's disease for the first time after days of plugging his twitching symptoms into Internet searches. Later, he'd say a part of him knew all along. But when the doctor gave him the diagnosis after a nearly four-hour exam, there was no way to add it into his life, into his dream house, into wife Shelly's life, into the lives of rambunctious 3-year-old Ryan and sweet 5-year-old Leah. There was no way to reconcile all of that with all the words he'd read.

Three to five years life expectancy. No cure. No aggressive treatments. No definitive cause. Simply, "it's not a nice disease," Van Wyk said.

To go through the motions of acceptance, he went home, upped his life insurance, talked with his wife. Then he stopped.

"I wasn't prepared to D-I-E," he explained with whispers and glances at Leah, chewing thoughtfully on a cream cheese bagel beside him. And more vehemently: "I decided that wasn't the answer I was looking for. By no means. I want to see these guys grow up, graduate, get married."

The frustration with Lou Gehrig's disease, or amyotrophic lateral sclerosis, is in the finality of the diagnosis. Most people progressively lose muscle movement as the disease breaks down motor neurons between the brain and spinal cord. Many become paralyzed, and about 80 percent die within five years.

Because so little is known about the cause of the disease, doctors can offer few treatments beyond one drug, riluzole, which is approved for managing symptoms and may prolong life for a few months. As a result, patients turn to all sorts of experimental therapies to resolve "this great big mystery," said Shiann Atuegbu, the patient services coordinator for the ALS Association of Upstate New York. Many from the area enroll in clinical trials, use herbs, visit chiropractors, even do their own informal surveying of others with ALS.

It's a disease that makes self-advocates out of patients, but then again, Van Wyk's mother, Corky Trombley, will adamantly agree that's a role that fits her son. "He's this do-it-yourself type. He said, 'I'm going to fight it,' and I said OK, because I knew he wasn't going to let it happen."

After the diagnosis, Van Wyk took to the Internet again, spending hours each day researching the disease until he could talk in scientific terminology, give research analysis and start to shape a treatment plan. He saw a homeopathic doctor for about eight months, learned how to eat organically, cut out alcohol and tried detox diets. Then, he got an e-mail from a friend of a friend, who said her brother-in-law learned before his death that his ALS may be linked to Lyme disease, which could be treated with antibiotics.

Willing to take any stab at a partial solution, Van Wyk sent his own blood work to a lab in California. The test came back positive, and he found a doctor willing to treat him with aggressive intravenous antibiotics. Every other month, he drives the five-plus hours to New York City for the treatment, which he believes has slowed the progression of the disease "down to a crawl." He has trouble balancing and gripping objects. But he still works as a graphic designer part-time at Ewing Graphics in Farmington; he can drive, walk, talk.

"You hear ALS and you think the worst — wheelchair, ventilator. In my opinion, this is a large piece of the puzzle. How can I stabilize otherwise?"

Met with what he saw as some success, he went a step further. "Why not try to completely reverse it? Something caused this disease. Something should be able to fix it."

He met with a doctor in California, who connected him with a doctor at a program in New Delhi, India, where Van Wyk said embryonic stem-cell transplants have been used for years to treat people with spinal cord injuries, Parkinson's disease and cerebral palsy. He said he talked to an American who traveled there to treat multiple sclerosis, and another who used the therapy for Lyme disease. Both had the stem cell injections about two years ago, and have seen major improvements, he said.

He understands there's skepticism and plenty of politics in a country where embryonic stem cells have been the subject of passionate moral debates. But he's confident and trusts his own research, because what does he have to lose?

"I've had many of my decisions looked down upon, but I'm where I'm at because of those decisions," he said.

The trip will cost $50,000, and, always the do-it-himself type, Van Wyk has raised about half the money with help from family, friends and co-workers at Mickey Finn's in Victor, where Shelly bartends. This month, the Van Wyks hosted a carnival-themed fundraiser at Dryer Road Park in Victor, and have planned a golf tournament in June.

Once the money is raised, Van Wyk plans to travel with his mother to India in late June, spend two months receiving twice-daily stem cell injections and undergoing physical therapy. If all goes according to his plans, he'll return in the fall to Shelly, Leah and Ryan — "a new me," he said, with all the hope he's found for himself.

JUWANG@DemocratandChronicle.com