HiCy treatment, spurred by philanthropy, allows patients to fight back
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Richard Bauer was on his feet all day as a machine operator, and working nights at a local steakhouse, when the symptoms first started. “Within months, numbness and tingling traveled up my trunk, then down my left arm,” he recalls. “My feet got really heavy, as if I had lead weights in my shoes, and my coordination began to go.”
Richard's life descended into a nightmare round of appointments with different doctors at different hospitals before he was diagnosed with multiple sclerosis (MS). His own immune system was attacking his body, stripping the myelin coating from his central nervous system.
Soon he was in a wheelchair, had lost hearing on the left side, and was forced to move back in with his family. Six months out of work, his insurance ran out. That’s when Richard met Hopkins neurologist Douglas Kerr, M.D.
Dr. Kerr told Richard about a treatment with high doses of cyclophosphamide (HiCy), which kills off disordered cells so a patient’s own stem cells can regenerate and “reboot” a properly-functioning immune system. Hopkins researchers — including Kerr, Robert Brodsky, Richard Jones, Daniel Drachman, and others — had for years used HiCy for patients with various autoimmune disorders, from aplastic anemia to lupus, from scleroderma to myasthenia gravis.
Spurred on by private gift support from philanthropist Alvin Myerberg (see videos to right), the Hopkins team was now studying the therapy’s effectiveness against MS.
“MS was taking my life. I had to attack it as aggressively as it attacked me,” says Bauer. “‘If there’s a chance to fix me,’ I told Dr. Kerr, ‘then fix me.’”
Before he could be accepted for the protocol, Richard went through two months of testing to make sure his heart and lungs could survive it. To be sure he understood the treatment’s risks — even a risk of death — and was capable of making an informed decision, he also agreed to a psychiatric evaluation.
Richard was admitted to the Johns Hopkins Hospital for four consecutive days of HiCy infusion. He went home after the fourth day, but came back daily to have his blood counts checked and for antibiotic infusions. Blood counts dropping to zero were a good sign and a warning. That meant his old immune system had been destroyed, but that he was vulnerable to every passing germ. A week of a special growth hormone stimulated his stem cells to do their rebuilding, and after four weeks, things started to reverse.
“I started walking to the bottom of the street and back, at first with a cane, and it took a long time,” he says. Gradually the distance increased and the time decreased. “I went from one block to a half-mile to two miles.” Today, Richard Bauer runs 2 ½ miles a day.
