How 4 women defied doctors, disabilities
Unconventional medicine paid off for these desperately ill patients
By Megan Irwin
Updated: 7:31 a.m. ET Aug. 8, 2007
These courageous pioneers faced extreme disability or death. But when they exhausted the best traditional treatments for their diseases, their hope endured. Instead of giving up, they sought—and found—new life on the frontiers of alternative medicine.
Along the way, each of the women grappled with fear and uncertainty while coping with the rigorous physical demands of their unproven treatments. But they've all defied their grim prognoses, and live each day filled with energy, optimism, and joy.
Learn by their examples what it takes to forge a personal path to your best health.
Raphaela Savino, 68, Brooklyn, Nurse
Then: A diagnosis of stage 2 ovarian cancer
Now: "I've been healthy for 15 years"
As a nurse, Raphaela Savino was always admired for her strength and independence. So it came as no surprise to her friends and family that after she was diagnosed with aggressive ovarian cancer in 1992, she chose an unconventional path toward recovery.
Savino did have surgery to remove her ovaries, uterus, and fallopian tubes but refused the recommended follow-up chemotherapy, which promised her a 70% chance of surviving for 5 years. "Having cared for cancer patients, I knew chemo would make me sick and destroy my immune system, which I needed to get strong," she says. If the time she had left was limited, she wanted to pack it with as much joy and energy as possible.
Still, she felt she should do something and became interested in alternative strategies for staving off a recurrence of the disease. Her research led to Nicholas Gonzalez, MD, a Manhattan immunologist who's had success treating cancer with pancreatic enzymes, which come from pigs. Gonzalez's approach is based on century-old research by Scottish embryologist John Beard, who first theorized that enzymes in the pancreas could have strong cancer-fighting properties.
Gonzalez prescribed the enzymes and a custom diet consisting of raw foods, vitamins, minerals, and trace elements designed to fight cancer and bolster her immunity, which appealed to her because it was the opposite of what she feared from chemo. The supplements totaled nearly 200 pills a day.
"This is really aggressive medicine," Gonzalez says. "We're as tough as any oncologist is with chemo. The idea that you just drink some green juice is not true. It's a tough road."
How tough? Savino rose every morning before dawn to prepare her meals, apportion her pills, and plan her detoxification routine, all the while coping with side effects typical of the early stages of the treatment, such as aches and extreme fatigue. "I was exhausted. But I could feel the effects right away, and that made me stick with it. I began to look better, more alive. I felt like my immune system was being challenged in a positive way, not destroyed, like with chemo."
As each month passed, she felt better and stronger. Blood tests revealed an increasingly vigorous immune system and declining cancer markers. Within 18 months, she began reducing the number of supplements she took and today, 15 years later, is down to about 70 pills a day. She hasn't seen an oncologist in that time but is confident she is healthy.
"I'm stronger than ever," says Savino, who now also works as a health care consultant. "I take adventure trips—white-water rafting, horseback riding—to Utah and Canada. The younger women are always amazed. They can't believe I had such a serious illness."
Although Savino credits her special diet for warding off a recurrence, the American Cancer Society has a different explanation: "The surgery is what saved her life," says Barrie Cassileth, PhD, chief of the integrative medicine service at Memorial Sloan-Kettering Hospital in New York City and an ACS spokesperson. "It's important to eat well and stay strong, but no diet has ever been shown to cure cancer." She points out that the greatest risk in pursuing alternative care for a serious illness is that it may prevent you from receiving lifesaving conventional treatment.
Bottom line: Ovarian cancer is deadly, surgery offers the only proven chance of a cure, and chemotherapy provides insurance. Most doctors would consider Gonzalez's regimen only as an adjunct to conventional therapy.
Kathy Simonik, 52, Barrington, IL, Graphic Designer
Then: Needed a metal rod to support her spine
Now: "I do 10-minute headstands"
After several back operations and years of therapy, Kathy Simonik was advised 5 years ago to have two final surgeries to implant a metal rod running through much of her spine. Although it would drastically impede her range of motion—she wouldn't be able to turn her head without turning her entire body—the procedure, her doctors said, would relieve her incessant pain.
Simonik had good reason to be skeptical about the operation's success. Her last surgery, to implant two metal rods and six screws, left her with 18 months of sciatic nerve pain. So she ignored their advice and turned instead toward an obscure alternative treatment called naprapathy. "I left the doctor thinking, I gave this my all. I said no and never went back."
She mentioned her decision to a friend, who recommended that she see Patrick Nuzzo, a local naprapath. (Naprapaths are licensed only in Illinois and New Mexico.)
Naprapathy is a form of manual medicine that, like chiropractic care, focuses on musculoskeletal conditions. "Where we differ from chiropractors is that we don't continually adjust the spine the way they do," Nuzzo explains. "We treat the tissue around it as well. Each vertebra in the spine is supported by 17 ligaments. Tension in those supports causes rigidity, reducing blood flow to nearby tissues. From her degenerative disease and the surgeries, Kathy had decades of tension built up in her spine. My challenge was to release that tension."
Simonik received treatments every 2 weeks and continues to today. Her mobility gradually increased and the intense pain faded. She was able to go off the pain medication she'd taken every day for years.
At Nuzzo's suggestion, Simonik began working with a yoga instructor to strengthen her muscles and increase her flexibility. Today, she can do backbends and headstands.
"It didn't come easy," she says. "It's taken 4 years. It wasn't hard to be dedicated, because I was in so much pain. I was willing to do anything to stop it. My instructor says the most motivated student is the one who wants to move out of pain and into freedom. I'm a living example."
After three failed back surgeries, Simonik can hardly be blamed for not having another. "I tell my patients to try anything and everything before they resort to an operation," says Noah S. Finkel, MD, an orthopedic surgeon in Huntington, NY, and spokesperson for the American Academy of Orthopedic Surgeons.
"The reason she got better was probably because her therapist helped break down all the scar tissue she had and stretched out the cramped ligaments around her spine. The exercises then helped her rehab her muscles and stabilize her pelvis." Finkel says a variety of therapies, including chiropractic and deep-tissue massage, may help back surgery candidates avoid an operation.
MiAsia Pasha, 55, Phoenix, Small-Business Owner
Then: Bedridden from chronic pain
Now: "I go dancing with friends"
As you watch her shimmy and shake on the dance floor at a local club, you'd never guess that just 3 years ago MiAsia Pasha was depressed, discouraged—and in constant agony. HIV positive since 2001, she was taking a cocktail of antiretroviral medication that caused terrible side effects, including pain in her feet that made it impossible for her to walk—not to mention enjoy her favorite recreational activity, dancing.
"It was like stepping on hot needles," she remembers. "You can't think when you're in such constant pain. All I did was sleep and watch television. And take more pain pills."
Her doctors told her that the drugs Kaletra, Epivir, and Viread, which prevent the HIV virus from replicating, were causing peripheral neuropathy—damage to nerves that results in severe pain. Pasha was in a nasty bind: Take the lifesaving medication and suffer, or forgo the drugs and die.
Optimistic by nature, she believed there had to be another choice and sought help at Phoenix Body Positive, which provides services, including naturopathic medicine, to people with HIV/AIDS. There she met Mark Green, then a resident naturopath.
Green says he sees many HIV patients who have become so discouraged by the side effects from their antiretroviral drugs that they stop taking them. His work at Body Positive focuses on making patients well enough to stick with the regimen—and stay alive.
For Pasha, he devised a treatment plan that included injections of vitamins B12 and B6, to improve nerve function, and twice-weekly acupuncture. Although phobic about needles, Pasha embraced the therapy: "I was willing to try anything." After 3 months, she was no longer bedridden and started driving her car again. Biweekly treatments reduced the pain in her feet to an occasional prickling sensation—a small price to pay for being able to tolerate lifesaving drugs.
Almost as important, she was able to dance again. The memory of her first venture back onto the dance floor with her friends brings tears to her eyes.
"I must have danced to about six records in a row," she says of that night. "I was like, I've got my life back."
Because there is often no cure for neuropathy, it's a prime candidate for alternative treatments. To date, no clinical trials have proven that acupuncture works better than medication for neuropathic pain. "But I have patients who receive acupuncture, which seems to help them," says Todd Levine, MD, codirector of the neuropathy center at Banner Good Samaritan Medical Center in Phoenix. "Acupuncture is not wacky. It's safe and if it helps, it's wonderful."
Brooke Sterling, 38, Scottsdale, AZ, Yoga Instructor/Studio Owner
Then: A lifelong battle with cystic fibrosis
Now: "I lived past my death sentence"
Twenty years ago, as an undergraduate at Pitzer College, Brooke Sterling wandered into a yoga class and was immediately transformed. "It was a profound moment," she says. "I had discovered something that was going to change my life."
For Sterling, who has cystic fibrosis, an inherited chronic disease that can cripple the lungs, yoga was more than life altering. It was life giving. When she was diagnosed at the age of 6, life expectancy for CF patients was 11 years. (It has since risen to just 37.) "With each pose, I felt my breathing become easier, my lungs loosen up," she recalls. "Afterward, I felt ridiculously courageous for no apparent reason. And I was at ease about my future."
Now, at 38, with a lifestyle centered on her yoga practice and a custom nutritional regimen to take the place of conventional drugs and protocols she has abandoned, Sterling has blown past her death sentence and shows no signs of losing speed. "Yoga has improved my lung capacity to nearly that of someone without CF, depending on the day," she says.
Her departure from traditional CF therapy stands in stark contrast to the path chosen by her brother, Jordan, who also has CF. Both grew up knowing their horizons were considerably foreshortened; the only known treatment that offers a reprieve for respiratory failure due to the disease is a risky double lung transplant.
As his condition worsened in his 20s, Jordan decided to go for the operation and, after several years on a waiting list, received a successful transplant in 2001. After a long recovery (many patients reject the foreign tissues), Jordan, 32, now lives a full and active life.
A few years before Jordan went on the transplant wait list—it took him 3 years to be matched with a donor—his sister, whose condition was also deteriorating, discovered Bikram Yoga, an exceedingly rigorous series of 26 postures done in a 105°F room. "Bikram is the best feel-better pill I have ever experienced," she says. After having a bad reaction to a medication she was taking to clear her lungs, she decided to give up using prescription meds to manage her condition.
Because CF also impairs the pancreas, which makes enzymes that help digest food, the disease leaves victims undernourished. Sterling has long struggled to stay above 100 pounds. To maintain her weight, every morning she "douses" her body with nutrients—a handful of supplements she washes down with a smoothie that may include powdered greens, ginseng, royal jelly, brewer's yeast buds, bee pollen, glutamine powder, and colostrum. That's before her regular breakfast of foods like eggs, mangoes, tomatoes, and pita with hummus. She usually eats another five to seven meals a day, with special enzymes to help her absorb nutrients.
Sterling also puts her own natural spin on traditional treatments. Instead of the recommended steroids, she has tried inhaling N-acetyl-cystine, a naturally occurring amino acid that thins mucus, from the nebulizer she uses to clear her lungs.
Today, Sterling owns a yoga studio that is also home to a clinic that offers alternative therapies like acupuncture, massage therapy, and Chinese herbal medicine. With her special diet, she's managed to get her weight up to 115 and has a little fat roll around her middle, which she loves. She's even considering trying to have a baby in the next year.
The mere idea of giving life to another makes her think immediately of that first yoga class. "It allowed me to live my life," she says.
Sterling's decision to try to avoid a lung transplant is understandable—only 50% of lung recipients are alive after 5 years. According to the Cystic Fibrosis Foundation, one of her greatest risks was giving up her medications. Standard drug regimens include inhalants to keep the airway clear and Antibiotics
to fight infection.
However, the foundation does approve of a high-calorie diet supplemented with vitamins and enzymes like the one Sterling designed to improve her lung health. Some experts consider the lack of natural antioxidants to be a possible factor in the inflammation and infection cycle in CF, according to James Yankaskas, MD, codirector of the University of North Carolina Adult Cystic Fibrosis Program.
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