Kelly Ames, a staff assistant at Harvard Business School, is only 28 years old.
But in the six years that she’s had MS, a neurological disease that causes loss of coordination, partial blindness, even paralysis, she’s tried nearly every remedy in sight.
Drugs — steroids — helped some, she says, but she hated the side effects: “I’d eat like there was no end.”
At her mother’s urging, she went to France to bathe in the holy water in Lourdes, to no avail. Finally, when she could barely walk, she joined a support group, where one woman spoke of a horrifying remedy Ames had never thought of: bee stings.
Susan Graber, a 37-year-old South Carolina woman with MS, wouldn’t go near a bee, she says, because she’s “chicken to explore something where there’s nothing proven.”
She’s put her faith in mainstream science, becoming one of 301 human guinea pigs in a study of a new drug likely to be approved soon by the US Food and Drug Administration.
For years, MS patients had few options beyond steroids to soothe acute attacks, physical therapy and drugs to manage symptoms of the disease, which in some cases progresses steadily and in others, waxes and wanes mysteriously.
But recently, the tide has been turning for the 300,000 Americans with MS, two-thirds of them women in their 20s, 30s and 40s.
Doctors now have better tools to diagnose and track the disease, like MRI (magnetic resonance imaging), for instance.
They also have a firmer grip on the mechanisms by which this debilitating, though rarely fatal, disease gets started in the first place.
A leading theory now is that multiple sclerosis starts when the immune system gears up to fight a virus. Then, mistaking tiny markers on the myelin sheath surrounding nerve fibers in the brain and spinal cord for the virus, the immune system keeps up its attack, destroying the body’s own tissue.
But most important to people fighting MS, researchers have a whole slew of new remedies in the pipeline designed to slow progression of disease and reduce flareups.
Some of these drugs, like Betaseron, approved in 1993 by the Food and Drug Administration, and AVONEX, awaiting approval now, tinker with components in the immune system, suppressing levels of natural, inflammatory substances that contribute to MS flareups and boosting levels of anti-inflammatory chemicals.
“The net effect of both these beta-interferons is to dampen down an overactive immune system,” says Dr. Howard L. Weiner, co-director of the center for neurologic diseases at Brigham and Women’s Hospital.
The drugs may work by decreasing levels of gamma interferon and boosting anti-inflammatory substances like interleukin-4 and interleukin-10, among other effects.
Other drugs, like Copaxone, which is also awaiting FDA approval, work through somewhat different means to stop immune cells from attacking the myelin sheath around nerve fibers.
Still other drugs increasingly used against MS are old standbys on the market for other uses, like cancer remedies methotrexate and cyclophosphamide. These drugs work by attacking rapidly-dividing cells, like tumor cells and immune cells that attack myelin.
And other medications, like Myloral, a kind of vaccine, use a totally different approach, taking advantage of a phenomenon called oral tolerance.
The theory here is this: When a person swallows Myloral, which is made of proteins from the myelin sheath, immune cells in the intestines become programmed to recognize the myelin.
When these cells then travel through the bloodstream to the myelin sheath in the brain and spinal cord, they secrete anti-inflammatory substances that should stop the immune attack against myelin. Curiously, notes Weiner, if these same proteins were injected instead of swallowed, the response could be just the opposite — immune cells could attack the myelin sheath.
For many people like Graber of South Carolina, these drugs offer hope for a vastly improved quality of life, despite MS.
During the 2-year AVONEX study, researchers purposely did not tell Graber or any other participants which patients were getting Avonex and which, a harmless placebo.
But Graber, who had no feeling in her legs and could barely walk when the study began, knew right away. Each time she got an injection, she had flu-like symptoms — and relief from MS.
She also “started to fail tremendously” when the test was over and she had to stop taking the drug. Now taking the drug again in a follow-up study, Graber is thrilled.
“I have done so well on this drug,” she says. She still can’t work, but she no longer needs a cane to walk.
But it’s not just mainstream drugs that have people with MS buzzing these days — it’s honeybees.
When Ames first heard of bee venom therapy, she was appalled, especially when the woman in her group who’d been stinging herself “never showed up again. . . We thought she had died.”
But Ames was curious, too, and desperate. So she bought honeybees from a local beekeeper and began stinging herself — “screaming and crying” — every other day.
Popularized in recent years by alternative medicine gurus, among them, 90-year old Vermont beekeeper Charles Mraz, author of the self-published “Health and the Honeybee,” the idea of using bee venom medicinally is probably as old as Hippocrates.
But it was not until the 1950s that scientists, chiefly in Bulgaria and Germany, began taking bee venom seriously. Later, researchers at the Walter Reed Army Institute of Research got interested, too, among them Robert Brooks, a Pennsylvania beekeeper and pharmacologist.
Bee venom contains about 40 ingredients, says Brooks, including anti-inflammatory substances, one of which may be 1,000 times stronger than indomethacin, a nonsteroidal anti-inflammatory drug.
And two ingredients in bee venom, and bee venom as a whole, may stimulate release of cortisol, an anti-inflammatory chemical made in the body that also damps down immune response.
But Brooks warns that “the action of bee venom is much more complicated than the simple release of cortisol,” and Dr. Christopher Kim, a pain researcher in Red Bank, N.J., agrees.
In one study of 180 patients with arthritis and similar diseases, Kim found that injections of true venom reduced pain significantly more than injections of “sham” venom. But “bee venom therapy is not pleasant,” he says, and should be used only by patients who do not respond to conventional therapy.
Bee venom can also cause fatal anaphylactic shock, though this is rare. There are 40 reported deaths a year from all stinging insects, including bees and yellow-jackets, according to the National Institute on Allergy and Infectious Diseases.
To be safe, Kim tests patients first with a small dose of venom to see if they are allergic and keeps antidotes on hand.
Still, there is no scientific evidence that bee venom therapy helps in MS, says Stephen Reingold, vice president for research at the National Multiple Sclerosis Society.
But that could change.
Dr. Fred Lublin, acting chairman of neurology at Thomas Jefferson University in Philadephia, is now studying bee venom in mice, though he, too, stresses that the data are not yet in.
“Just the stress of being stung, as opposed to what’s in the venom,” could stimulate cortisol, he says. And “the placebo effect seems to be especially strong because of the nature of the disease,” which waxes and wanes on its own.
But try telling that to Kelly Ames or her friend Karen Davies, 32, who brings her own bees — obtainable by mail or from beekeepers — three times a week so Ames can sting her. She puts the bees on spots of the body that are also acupuncture points, thus triggering — perhaps — a double-whammy effect.
“I’ll try anything,” says Davies, who gets 120 stings a week. “I feel great,” she says. But she also takes Betaseron.
Ames, however, uses nothing but bee stings. “My eyesight came back and I stopped using a cane,” she says, as soon as she worked her way up to 13 stings every other day.
“I know it works for me. . .I don’t have MS anymore.”
SIDEBAR
What’s new for MS
These are among the new drugs recently approved, likely to be approved soon or under investigation for MS:
- Betaseron (interferon beta-1b), an every-other-day injection made by Berlex Laboratories, was approved by the FDA in 1993.
- AVONEX (interferon beta-1a), a weekly injection, made by Biogen, Inc., expected to be approved soon.
- Copaxone, by Teva Pharmaceuticals, a daily injection, also awaiting FDA approval.
- Myloral, a vaccine developed by AutoImmune Inc., now in clinical trials.
- Linomide, by Pharmacia & Upjohn, Inc., now in clinical trials.
- Cladribine, by Ortho Biotech, Inc., also in clinical trials for MS. It is on the market for leukemia, but can be toxic.
- Fampridine (4-aminopyridine), by Elan Pharmaceuticals, in clinical trials for management of symptoms of MS.
- Zanaflex, by Athena Neurosciences, Inc., to treat spasticity, is awaiting FDA approval.
For more information on MS and treatments, call:
- National Multiple Sclerosis Society, 1-800-FIGHT-MS.(1-800-344-4867); for Massachusetts residents, 617-890-4990.
- Multiple Sclerosis Association of America, 609-488-4500 or 1-800-LEARN-MS.
- American Apitherapy Society, 1-802-436-2708.
- MS support group for people using or considering bee venom therapy, 617-641-3109.
- For books on bee venom therapy, Honeybee Health Products, 1-800-603-3577.