“Stemcell Man” Keeps Hope Alive
Written by Mark Good
Thursday, August 09, 2007


Jerry Kaufman considers himself a pioneer. This spring the 58-year-old Surry man ventured into unknown territory, traveling to Central America for controversial stem cell transplants designed to combat amyotrophic lateral sclerosis or ALS.


Jerry and Jacqui Kaufman relax in their home in Surry. Jerry recently received controversial stem cell treatments for ALS.

But pioneers often serve a greater purpose than exploring new territory; they also prepare the way for others to follow. This second role may prove ultimately more important, Kaufman said. He hopes the treatment he sought advances embryonic stem cell research in this country and opens the door to a real cure for neurological diseases.

Kaufman describes himself as a high-energy person, always on the go. As a counselor he did a lot of public speaking, conducted numerous workshops. He worked out regularly at the James Russell Wiggins Down East Family YMCA, spent time on his boat and participated in trap-shooting events at the Blue Hill Rifle and Pistol Club.

In January 2006, Kaufman, who doesn’t smoke, developed a persistent cough. His primary care physician found this to be unremarkable. A few months later, he began to experience muscle twitches, beginning in his left shoulder. Again, his doctor could find no explanation.

In the fall, his symptoms grew worse.

“My speech started to slur; I had shortness of breath,” Kaufman recalled.

After a neurologist in Bangor was unable to make a diagnosis, Kaufman and his wife, Jacqui, made a trip to Beth Israel Deaconess Hospital in Boston, where he was put through a battery of tests. ALS is a default diagnosis, Kaufman said; it is considered only after other medical problems are ruled out. Doctors in Boston suspected Kaufman had ALS. He was told they would know for sure if the symptoms got progressively worse. By January of this year, Kaufman had a definitive diagnosis.

“At that point I became very fatigued,” he said. “My legs were getting weaker, my breathing more labored.”

ALS, better known as Lou Gehrig’s disease because it ended the career of that famous baseball player, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. As these nerve cells degenerate they die, affecting the ability of the brain to initiate and control muscle movement. Although ALS patients gradually lose control of their voluntary muscle actions, their minds are usually unaffected.

A diagnosis of ALS is basically a death sentence. There is no treatment and patients, on the average, die within three to five years of contracting the disease.

“All they could offer me was to keep me pain-free,” Kaufman said.

That was unacceptable to Kaufman, who said he has always fought against injustices.

“I viewed ALS as a big injustice,” he said. “I became very frustrated because I wanted to fight the disease.”

It wasn’t the first time Kaufman found himself behind the eight ball. About 15 years ago he was diagnosed with non-Hodgkin’s lymphoma. The prognosis wasn’t good, he said. But, with chemotherapy and a “positive mental attitude” he was able to beat the disease. Kaufman said keeping a positive attitude is an integral part of his strategy for dealing with ALS.

“I’ve never been a person to say, ‘Why me?’” he explained. “All I wanted was the opportunity to combat it.”

In April, Kaufman said, he got that opportunity. His son had found a clinic in Belize called Eden Laboratories, where doctors were conducting advanced stem cell research, transplanting stem cells in human patients and reporting success with treating ALS and other debilitating diseases.

Stem cells are unprogrammed cells that can become bone, muscle and other types of cells. Because of this ability, stem cells have the potential to treat many diseases.

The treatment procedures at Eden are not approved by the American Medical Association. The treatments are expensive and not covered by medical insurance. The Kaufmans, their two sons and a daughter-in-law held a family meeting to discuss the situation. The family unanimously agreed that going to Belize for treatment was the best course of action, despite the risk.

“It was a leap of faith; all my life I lived in a unconventional way,” Kaufman said. “I knew what would happen if I didn’t go to Belize. I was more afraid of what would happen if I didn’t go than if I went.”

Kaufman spent two and a half weeks at Eden. The first week involved detoxifying, using a process called chelation to remove heavy metals and toxins from his body. Then doctors built up his systems with what they call nutraceuticals, a combination of vitamins and minerals designed to strengthen the body. That involved taking as many as 55 pills a day, Kaufman said.

“I noticed the results immediately,” Kaufman said. His skin became less wrinkled and the whites of his eyes whiter.

Kaufman had been taking riluzole, a medication used with some success in slowing the progress of ALS. He stopped after the doctors at Eden told him to quit taking the drug, saying it will hurt him more than help him, he said.

The next step was to neutralize Kaufman’s immune system so his body wouldn’t reject the stem cells. Doctors then introduced cloned embryonic stem cells in three ways — through an IV, in the abdomen and into bone marrow in Kaufman’s hip. This was followed by more vitamins and minerals.

“On my release I was put on a very strict diet,” Kaufman said. He continues to avoid glutens, alcohol, refined sugar and black pepper and eats limited amounts of red meat and then only if it is free-range and organically raised.

Since returning from Belize, Kaufman has seen considerable progress. He had cleaned out his locker at the Y in October, thinking he would never be back. He’s walking without a cane, working with a personal trainer at the Y and is swimming 10 laps in the facility’s pool — all things he couldn’t do before his trip to Eden. His speech is still slurred but improving with therapy.

“I feel empowered because I’m able to do these things,” Kaufman said.

Kaufman is to return to Eden in August and then every 16 weeks for booster stem cell treatments. Treatments at the clinic are customized; each patient is seen as unique. Stem cell transplants are being refined, he said, and he expects a cure to be found for his ALS by researchers in the field.

“When they unlock the secret of getting stem cells to go where they are needed that’s when the cure will be found,” Kaufman said.

Kaufman said he is frustrated with the political and religious objections to embryonic stem cell research in this country because the controversy has delayed valuable research that could be helping to save lives. He would prefer to have his treatments in Bangor instead of Belize.

“I believe, in the future, stem cell transplants will be as common as chemotherapy or dialysis,” Kaufman said. “I think we’re five or 10 years away from that.”

In the meantime, Kaufman is leading his own small crusade, educating everyone he can about the importance of stem cell therapy in hopes that attitudes about the medical use of embryonic stem cells change.

“I’ve always been a live and let live person,” he said. “I believe people should be allowed to make their own reasonable decisions.”

For more information, visit Kaufman’s Web site at stemcellman.com.

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