By Tori Marlan
Twice a week after dinner Donna McGhee would hunch over her knees on a kitchen chair and pull up her shirt, exposing her back. Sixteen bruises the size of pinpricks formed a vertical line along each side of her spine. She would bite on a dish towel and concentrate on remaining still, while her husband, Dee, knelt behind her, wiping her back with an alcohol swab. Using a syringe, he'd then inject honeybee venom under her skin into one of the tiny bruises.
The area around the needle would instantly turn white and begin to swell. As the venom coursed through her body, simultaneously burning and itching, Donna would clench down on the towel, wrinkling her face into a ball. Sometimes she'd let out a faint grunt, and Dee would ask, "You OK, baby?"
He would then repeat the process on the opposite side of Donna's spine and two more times directly above the first two injections, altogether administering the equivalent of ten bee stings. Within a few minutes the areas where he'd given the shots would turn blotchy, and four symmetrical dime-size bumps would appear. Within a few days the bumps would turn into little bruises again.
Donna wanted to believe that the bee venom would make her well. Two years before, when she was 28, she'd learned that she had multiple sclerosis. Myelin, the fatty tissue that surrounds and protects nerve fibers, had broken down in her central nervous system, hindering the flow of nerve impulses to and from her brain. Symptoms of multiple sclerosis can range from numbness to paralysis. The course of the disease varies; it's often characterized by random waves of attacks and remissions. Despite periods of temporary relief, people usually get progressively worse.
Donna, who was in the early years of the disease, couldn't see how there was much room to get worse. She hobbled around her apartment, hands pressed hard against the walls for support, knees pointed inward, legs shaky and bruised. She had little coordination, little balance, little energy. Every now and then she'd fall and get a concussion. Once in the middle of the night her husband found her unconscious on the bathroom floor. At 30, she felt three times her age and was envious and at times furious when she saw other young women walking effortlessly or senior citizens who had a bounce to their gait.
She had learned not to trust her perceptions. When she was nervous or excited or tired her eyes involuntarily skittered back and forth, causing everything in her line of vision to jump around, a condition that glasses were powerless to correct. When reaching for an object she sometimes grabbed the air instead. Food could be like gobs of glue, sticking to her throat, causing her to choke. Sometimes her skin was so sensitive that shaving her legs was irritating. Panty hose were irritating too, so she gave away her skirts. Other times her skin felt numb. She could soak comfortably in bathwater so hot her husband couldn't even dip his fingers in it.
Donna had learned to disappoint her three-and-a-half-year-old daughter, Ashley, and to forfeit some of the joys and responsibilities of motherhood. Three days a week she watched from her living-room window, sometimes unable to hold back tears, as a friend held Ashley's hand and walked her to the Jolly Fun House preschool down the street. She once watched from bed, unable to help, as her little girl attempted to change her own soiled diapers.
At times Donna wondered if she needed diapers herself. She couldn't distinguish between a full bladder and an empty one, and occasionally she would urinate in her pants or in bed.
Not much is known about who gets multiple sclerosis or why, and traditional medicine offers no cure. Donna's doctors pumped her full of drugs to alleviate her symptoms and tried to be optimistic, saying perhaps the disease would go into a long remission, but they scoffed at her interest in alternative treatments. Despite a heavy Polish accent and an occasional struggle to find words, Donna wasn't easily intimidated. "You read all those smart books and finished medical school, but you can't help me," she recalls telling one doctor. "I'm going to do whatever I have to do."
In desperation she called a doctor in Poland who gave seminars on treating multiple sclerosis by applying forks to pressure points. You're on the other side of the world, he said. I can't help you.
She went to two bioenergy therapists who waved their hands over her body, claiming to "push" their energy against hers. It didn't help.
She went to a faith healer on the south side who promised to cure her free of charge. She showed up with two pigeons, as he'd instructed, and entered the strangest world she'd ever seen. He burned incense, hypnotized her, and held a large prayer book close to his face while whispering in a foreign language--all to transfer her disease to the unsuspecting birds. The pigeons inexplicably collapsed and died in her hands, but the disease remained trapped inside her body.
Then late last fall a friend told her about bee-venom injections. The idea sounded bizarre, but as Donna would later tell people, "I'd shoot the urine of a dog into me if it would help."
Donna's experiment with bee venom began with the encouragement of Holly Luisi, a 35-year-old Federal Express worker who delivered Donna's monthly shipment of Avonex, a drug that Dee injected into her thigh every week. During the first couple of deliveries Luisi had noticed that Donna took an unusually long time getting from her second-floor apartment to the front door of the building. Gripping the railing, Donna had to rely on upper body strength to inch herself down the stairs. So Luisi began running the deliveries up to Donna's apartment. One day she noticed that Donna had been crying and asked what was wrong. Donna invited her in and confided in her.
Luisi seemed everything Donna was not. She was exuberant and animated. Donna was often sullen and nervous. Luisi was short and stout with small features and yellow hair that fell in loose curls on her shoulders. Donna was tall and lanky with short, thin brown hair, pointed features, and a slender, elongated neck. But they discovered they had much in common and became fast friends. Each had a daughter, spoke her mind, cared little for small talk, and was unpretensious. They shared intimate details about their health, children, and relationships and soon knew the names of each other's in-laws and former boyfriends.
Luisi began stopping by almost daily. For her, the visits broke up a monotonous work routine. For Donna, they enlivened what were often long days spent wallowing in self-pity. Luisi also began bringing Donna vitamin C and evening primrose oil--staples for many with multiple sclerosis--from a health-food shop on her delivery route. One day an employee at the shop told Luisi about a bee-venom study for multiple sclerosis patients.
"I got something for you," Luisi said, striding into Donna's apartment, handing her a letter she'd got at the shop that read, "We believe the research we are conducting will help medical science find treatments for...Multiple Sclerosis." Someone at the shop, Luisi continued, knew someone with multiple sclerosis whose condition had improved after using bee venom. Luisi had a soothing, lilting voice that made every word out of her mouth sound true. "I believe in it, Donna," she said.
Moments after Luisi left, Donna picked up the phone and called Ross Hauser, the doctor whose name appeared on the letter.
The McGhees had turned sour on doctors shortly after learning that Donna had multiple sclerosis. They felt the doctors had explained little about Donna's condition and had answered questions in roundabout ways. One had even accepted phone calls from his wife during Donna's appointments. The McGhees felt taken advantage of, especially since they were spending thousands of dollars on these visits because Dee's insurance didn't pick up all of the costs. Eventually Donna began to doubt not only doctors but traditional medicine.
A Southern Baptist from Arkansas, Dee still put his faith in Western medicine. An affable, hefty man, he worked on the Deep Tunnel project as a carpenter, belonged to a union, and shouted at the television while watching sports. Donna considered her husband a regular guy who did regular things, not one to embrace the unconventional. So she hadn't told him about visiting the bioenergists. She had told him about the faith healer, but she didn't mention the dead pigeons.
Dee told Donna to be patient, wait for a remission, and focus on the positive aspects of her life. There was so much to be happy about, he said. She had a beautiful daughter and a faithful husband who worked a steady 50-hour week. They lived in a comfortable apartment in a quiet neighborhood on the edge of the city near Norridge. Sure, there were places they couldn't go, things they couldn't do. But he didn't care; he'd sit home all night as long as she was by his side. Why didn't she feel the same way?
Donna saw things differently. Dee could dress up Ashley as a ladybug and take her trick-or-treating on Halloween. He could watch her interact with other children at the playground or school. He could easily rise from the couch and get himself a lousy glass of water. He could never fully understand what she was going through, so he could never fully understand her determination to find a cure.
"Are you nuts?" Dee said when Donna told him about bee-venom therapy. "A doctor from Northwestern can't cure you, but a bee can?" But he couldn't dissuade her from trying the therapy.
In mid-December 1996 Luisi drove Donna to her first appointment with Ross Hauser. Into the underside of Donna's arm Hauser injected 0.05 cubic centimeters of a bee-venom solution, the equivalent of one bee sting, then closely monitored her for anaphylaxis, a severe allergic reaction that can be fatal if not treated. According to the National Institute of Allergy and Infectious Diseases, anaphylaxis from insect stings occurs in 0.5 to 5 percent of the U.S. population, and about 40 people die each year as a result. Donna experienced only the usual puffiness and redness where she'd received the shot--nothing to cause alarm--and Hauser welcomed her to his study.
It didn't take long for Dee to come around once he saw how determined Donna was. "I had to say, 'OK, I'll drive you to Tahiti and sell everything I got if you think it will cure you.' Because I gotta be one way or another. If I'm gonna be an asshole, I've gotta be one. If I'm not gonna be one, then I'm not gonna be one."
He accompanied Donna to her next appointment and sat calmly in the waiting room, outwardly supportive but inwardly skeptical. He was sure Hauser would be a "flake," the bee-venom study a "scam." Then, above a filing cabinet, he spotted a poster extolling Jesus as a "compassionate healer," a "friend," a "giver of life." He'd never seen references to religion in a doctor's office before, and they set his mind at ease.
A trim 34-year-old man with a full head of jet-black hair and a casual manner, Hauser runs Caring Medical and Rehabilitation Services in Oak Park with his wife, Marion, a dietitian. The couple also collaborate on an advice column for the Cairo Citizen, The Doctor and the Dietitian, in which they answer readers' questions about ailments ranging from "pins and needles" to Lyme disease--and refer to flatulence as "tooting" and cataracts as films of "gooey gunk." Occasionally they send readers thumbing through the Bible for such things as "God's prescription for worry and fear." They sympathize, and occasionally empathize, with the people who write to them. "We know it's rough having zits," they assured a distraught 16-year-old. "Boy, do we know--we both have been there."
Hauser uses a similarly informal approach with his patients. He shuns the white doctor's coat, wanting to be viewed as a friend rather than a "hotshot doctor." So he dresses casually, sometimes even in a sweatshirt, and thinks nothing of lifting his own pant leg to point out an ideal area for bee-venom injections.
A graduate of the medical school of the University of Illinois at Chicago, Hauser specializes in treating chronic diseases. During his residency in physical medicine and rehabilitation in the late 80s, he grew disillusioned with conventional medicine, saying it offered his patients very little. He began referring people to acupuncturists and prescribing natural remedies, such as valerian root for insomnia and saw palmetto for enlarged prostate glands.
He says his flirtation with alternative medicine alienated him from his coworkers. "The other doctors didn't like it. They wanted me to do standard care." He says it also irked his colleagues that he once prayed with a patient. "He was depressed, and it cheered him up. I believe that every part of a patient is important--physical, mental, spiritual."
Hauser's interest in natural medicine led him to the office of Gustav Hemwall, an 83-year-old doctor with a thriving clinic in Oak Park. Hemwall specialized in prolotherapy, which calls for injecting such substances as zinc, corn extract, and cod-liver oil to treat chronic pain. Prolotherapy, says Hauser, strengthens and stimulates the growth of tendons and ligaments. He read Hemwall's book on the subject and went to work at the clinic after his residency ended. When Hemwall retired in June 1996, Hauser took over the practice, renaming it Caring Medical and Rehabilitation Services.
Patients now come to Hauser for a host of natural treatments, including prolotherapy; chelation therapy, which Hauser says removes iron and lead from the bloodstream and tissues and, along with proper diet, breaks down plaque in the arteries; natural hormone and vitamin injections; and a process called photoluminescence, which involves collecting blood from a patient, exposing it to ultraviolet light to destroy toxins and bacteria, and then transferring it back to the patient's body.
About four years ago Hauser heard of a natural-medicine doctor in Belvidere who used bee venom to treat chronic pain. He contacted the doctor, and each shared his expertise with the other. Hauser taught the doctor prolotherapy, and the doctor taught Hauser bee-venom therapy. Hauser joined the American Apitherapy Society, an organization that promotes the study and acceptance of honeybee products for medicinal use, and began reading up on the subject. The treatment sounded promising from the get-go. Hauser's cursory research suggested that after patients were stung by bees "some of the symptomatology of MS would go away, and some people would get out of wheelchairs."
He learned that honeybee venom contains 18 pharmacologically active components, and that one of them, apamin, is a neurotoxin thought to improve the conductivity of degenerating myelin. Apitherapists aren't exactly sure how bee venom works, but they generally believe that it stops inflammation and stimulates the adrenal glands to produce cortisol. They point out that diseases that respond positively to the steroid cortisone--such as rheumatism, lupus, and multiple sclerosis--also respond to bee venom. Another theory has bee venom tricking the body into making a chronic problem acute: the body recognizes the intrusion of bee venom as an emergency and reacts quickly to break it down--and in the process the body fixes anything else that's a problem in the affected area.
Hauser set out to gather some hard data. "It was clear that there needed to be some good research, because a lot of people were using it for MS. But there hadn't been any good studies on it." Without funding to launch a big research effort, he decided to conduct a small-scale pilot study tracking ten people for a year to see if bee venom warranted further research. He received approval from the American College for Advancement in Medicine, an organization of natural-medicine doctors with its own institutional review board. Donna was the first patient to sign on.
The McGhees liked Hauser right away. He encouraged them to administer the shots at home so they wouldn't have to set aside time and money to visit his office every other day. He made no guarantees, which they appreciated, and told Donna that it could take several months, possibly longer, before she noticed any changes. Hauser's nurse demonstrated how to inject the venom into Donna's back, and after a couple shots Donna couldn't contain herself. "Oh God, oh God," she whimpered, then bit down so hard on her lip that it later swelled.
Hauser suggested that Donna eventually receive the equivalent of ten stings in four areas around the spine every other day, then sent her and Dee on their way with a box of syringes, a prescription for a kit containing epinephrine on the remote chance she'd develop an allergic reaction, a local anesthetic called lidocaine to make the shots more bearable, and a vial of a cloudy white solution containing particles of dried bee venom. The visit cost $55, but the venom for the study had been donated by Apitronic Services in Canada and a 91-year-old beekeeper from Vermont named Charles Mraz.
It's possible that bee-venom therapy would have remained a secret of the beekeeping and rural populations in the United States but for the efforts of Mraz and a woman with multiple sclerosis named Pat Wagner.
By his own count, Mraz has treated thousands of people over the past 60 years for rheumatoid, autoimmune, and neurological diseases--including arthritis, lupus, and multiple sclerosis--simply by stinging them with bees from his apiary in Vermont. In the introduction to Mraz's 1995 book Health and the Honeybee, Bradford Weeks, a doctor who befriended Mraz, calls the beekeeper a "thorn in the side" of Vermont doctors. He writes, "One doctor admitted to me, 'As far as results are concerned, Mraz has the most successful rheumatology practice in New England.'"
As a teenager learning the beekeeping trade, Mraz knew that older beekeepers considered bee stings a cure for arthritis. But at the time he didn't know that his elders were part of a long tradition of believers or that in many parts of the world honeybee venom had been considered a healing agent for ages.
Some apitherapists say the bee stinger has been a component of Chinese medical practice for thousands of years, that it served as the first acupuncture needle. Charlemagne supposedly cured gout with bee stings. In the mid-19th century European doctors published the first studies linking bee venom to the successful treatment of rheumatoid arthritis and neuritis. The medical establishment ridiculed their findings and ostracized the doctors, but beekeepers and rural populations had long accepted the medicinal value of bee stings. According to the 1935 book Bee Venom Therapy by Bodog Beck, this belief had been "handed down like an heritage from one generation to another, from ancestors to descendants, from fathers to sons, by written and unwritten communication...in Germany (especially Bavaria), France, Italy, Austria, Switzerland, Czecho-Slovakia, the Balkan states, in the Caucasus, and even in America."
In his early 20s Mraz moved from New York to rural Vermont to work as a commercial beekeeper. He heard plenty of talk about the venom there, but he considered himself too intelligent for such "damn nonsense" and dismissed those who believed as "a bunch of nuts."
But at 28 he contracted rheumatic fever, and after eight months of crippling pain he allowed honeybees to sting his knees. He got the surprise of his life. The following day, he says, the stiffness and pain disappeared. Mraz then experimented on an arthritic neighbor, a dairy farmer, who after a few weeks of stinging reported that he could painlessly milk his cows.
Mraz arranged to meet Beck, a Hungarian doctor who treated patients with bee stings in New York and who was then in the process of writing his book on the subject. Beck impressed Mraz with his extensive library on bees, so Mraz offered to look after Beck's hive in exchange for instruction on bee-venom therapy.
Beck hoped his book, which described the physiological effects of bee venom and discussed case studies, would galvanize the medical profession to further study bee venom, but it didn't. According to Mraz, small studies did pop up now and again in the years following the publication of Beck's book, but medical journals refused to publish the findings. In the 1950s Mraz became acquainted with Joseph Broadman, another New York doctor interested in bee-venom therapy. Mraz helped Broadman treat his early bee-venom patients, but eventually, instead of using live bees, Broadman ordered a bee-venom solution from Germany. In 1962 he wrote the book Bee Venom, the Natural Curative for Rheumatism and Arthritis and was summarily dismissed as a quack.
But after reading the book, Glenn Warren, a wealthy man who suffered from arthritis, decided he couldn't wait for the medical establishment to deliver the verdict on bee venom. He commissioned studies in different parts of the country to isolate the components of bee venom and to test its effectiveness on arthritic rats and dogs. "We found the basis by which bee venom might be pharmacologically effective," says James Vick, a former officer at the Walter Reed Army Institute of Research who conducted some of the studies. "It released histamine, adrenaline, and cortisol in the animals."
Vick says he knows of no scientific evidence supporting the idea that bee venom is beneficial for people with multiple sclerosis, but he wouldn't be surprised if it were. "Venoms are composed of many different chemicals," he says, "and often times they have positive effects in the body. Venom research is truly embryonic, and I believe that as the years go by they will find many uses for venoms in medical research and in actual clinical use." He believes he's already seen curative effects from one kind of venom. A friend of his with Lou Gehrig's disease once experimented with cobra venom and "did quite well. But his physician said this was spontaneous remission--the usual response--and the FDA closed down the clinic where he was treated."
Pat Wagner, a Maryland woman with multiple sclerosis, now serves as the poster woman for bee-venom therapy. She claims to have undergone a remarkable recovery in 1992 after receiving bee stings from a man Mraz had mentored. Before the stings, Wagner says, she was a "breathing corpse"--nearly blind, nearly deaf in her right ear, and confined to her bed. She claims that after several weeks of bee stings she began regaining her sight and hearing, and that within a few months she could walk again.
Wagner's story generated much media attention, and she ardently testified to the healing power of bee venom on television and in newspapers. She also invested in a hive and started treating others. "I wouldn't say it's a cure," she says, "but I know people who haven't stung for years and now they have no symptoms."
Stories like Wagner's sparked interest among people who believed they had nothing to lose. Soon she and Mraz found themselves at the center of a burgeoning underground movement, accepting phone calls from strangers across the country who wanted to learn apitherapy. Today approximately 10,000 people with multiple sclerosis undergo some form of bee-venom treatment--either with live bees or injectible solution--and interest is picking up among those with other incurable diseases.
The U.S. Food and Drug Administration, the American Medical Association, and the National Multiple Sclerosis Society have neither approved nor disapproved bee venom as a treatment for multiple sclerosis. These organizations say the existing studies and literature are either insufficient or not scientifically sound. Since doctors are required to practice standard care--whatever scientific research has proved to be safe and effective--they tend to be less enthused than their patients about stories like Wagner's and more inclined to consider her recovery a result of either the placebo effect, which is largely psychological, or a spontaneous remission, which sometimes occurs without any intervention in multiple sclerosis patients.
Proponents of bee venom believe the medical establishment's skepticism is driven in part by profit. About 20 drugs on the market treat symptoms of multiple sclerosis, among them immunosuppressants to slow the progression of the disease, antiinflammatory drugs to shorten the duration of attacks, and interferon to reduce the frequency of attacks. In addition, there are drugs to alleviate fatigue, spasms, and tremors and to limit bladder dysfunction.
To develop a single drug, pharmaceutical companies spend an average of 15 years and $298 million, according to the Tufts Center for the Study of Drug Development. As a result, when the drug hits the market, its price is often exorbitant. A year's supply of Avonex interferon, for example, costs the consumer (or her insurance company) about $10,000. Compare that to a year's supply of injectible bee-venom solution, made by beekeepers, which costs only $1,200 to $1,500. Live bees are even cheaper, costing about $480. (A pack of 60 bees costs about $10.) Apitherapists argue that pharmaceutical companies--and doctors--would stand to lose a lot of money if multiple sclerosis could be cured at home with a natural resource such as bee venom.
Dusan Stefoski, a neurologist at Rush-Presbyterian-Saint Luke's Medical Center, believes that natural cures could also be profitable for drug companies. "They can always improve upon natural stuff," he says. "We could see maybe bee-sting venom made into a pill. Some of the medications which started as simple natural products are now standard drugs." He says that bee venom has intrigued him over the years, though he doesn't hold out much hope for it as a cure. Ten to 15 of his patients have left him to experiment with bee-venom therapy, he says, but most came back, hopes dashed. "Not one had sustained benefit."
But Stefoski does find it interesting that some constituents of bee venom--such as apamin and melittin, a potent antiinflammatory agent--seem to act similarly to the synthetic chemical 4-aminopyridine, which he's been studying since the early 80s. He's found the chemical capable of restoring some conduction of nerve impulses, and drug companies are now developing it as a drug for multiple sclerosis.
Since Pat Wagner went public, the number of multiple sclerosis patients inquiring about bee venom has skyrocketed, and organizations that exist to lobby in the interests of these patients have felt pressure to come up with funds to study the treatment. Both the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America are now sponsoring clinical studies, and the MSAA study even has the approval of the FDA. A total of four studies nationwide, including Hauser's, are under way.
Donna sometimes jokingly referred to her husband as Dr. Dee. He'd learned to dexterously insert a needle deep into her thigh muscle for the weekly Avonex shot, and he shifted easily to deftly slipping the short-needled syringe containing bee venom under the skin of her back.
The lidocaine Dee mixed in with the bee-venom solution lessened Donna's discomfort but didn't eradicate it. Anxiety overcame her before the shots. She couldn't sit through a movie knowing what was to follow. Once she started thinking about the shots she had to get them over with. She was short of breath afterward, anticipating an allergic reaction that never came.
Donna could stand to get the shots only twice a week, despite Hauser's orders to do them every other day. After each session, she'd log the "stings"--the equivalent of 20 a week--on a wall calendar, sit back, and wait for a miracle. A day or two would pass without improvement, and she'd think, "Maybe next time. Maybe the next shot."
She and Dee gained confidence in the therapy when talking casually with relatives and friends. Suddenly it seemed everyone had heard something about bee venom. Donna's mother said Ukrainian children had come to Poland for bee-venom therapy after the accident at Chernobyl. A friend in Germany mentioned that her husband used bee-venom ointment for backaches. A friend of Dee's informed him that Unsolved Mysteries had aired a segment touting the therapy, and any lingering doubts he still had about the treatment vanished. The show had announced to an estimated 8.3 million viewers nationwide that, for some people, honeybees were "miniature flying drugstores" and "dispensaries of miracle cures."
"I believe in it," Donna started saying to others. During the anxious moments when she'd offer her back to the needle she started saying to herself, "I can do this. I can do this. I can do this."
But about three weeks after beginning the shots Donna crashed hard. She'd expected the bee venom to boost her energy, but it hadn't. She was lethargic and morose. During a routine visit in mid-January 1997, her neurologist observed that she'd got worse since he'd seen her last and ordered her into the hospital for a two-week regimen of physical therapy and steroids. Her experiment with bee venom screeched to a halt.
In the hospital Donna cried every day. A psychiatrist talked with her, but their sessions never got far because he would arrive first thing in the morning, during breakfast, and she hated eating in front of people. He would also ask questions that annoyed her, prodding her about intimate--and what she thought were irrelevant--details of her youth, asking, for instance, whether she'd been molested or used drugs. His presence made her nervous, and she shook more than usual when reaching for her bagel and tea. After a few days she made it clear she didn't want him to come back. She did, however, manage to get a prescription for the antidepressant Paxil.
Donna had had a rough beginning, but not the kind the psychiatrist's questions suggested. Born Dagmara Mokrzycka in the seaside city of Gdansk in northern Poland, she entered the world in November 1966 with a broken shoulder. Her mother removed her from the hospital 12 days later, just in time to escape a staphylococcus infection that was spreading through the ward killing infants.
When Donna was three her father left the family and moved to England. As a child she endured tonsillitis, chicken pox, pneumonia, and the flu. She also briefly had a displaced hip and blurry vision, both of which she overcame with therapy. Based on what's known about multiple sclerosis, she was a prime candidate to develop the disease. Multiple sclerosis occurs more in northern Europe than anywhere else in the world. Leading researchers believe the disease stems from a combination of environmental and genetic factors and that it's triggered in childhood, perhaps by a garden-variety virus like any of those Donna had had.
In the 1970s periodic increases in food prices sparked strikes and riots in Poland. During this time, meat, when it was available, was prohibitively expensive, and vegetables were scarce. Donna never went hungry--her mother, a midwife, knit sweaters on the side for extra cash--but a consistent diet of onions and bread deprived her of proper nutrition.
At 14, Donna spent a year in England with her father and his new family. The English she learned later made her an attractive applicant for a job in tourism (she also spoke French), and she easily found work as a cocktail waitress on an American cruise ship. After eight months she migrated to Florida, then moved on to Chicago, drawn by its large Polish population. Donna met Dee while working at his aunt's bar. Dee had heard about the "fine" new bartender and went to check her out one night after work. She had long hair, and wore a tight black miniskirt. Dee was smitten. They made eye contact from across the room, then he sauntered up to the bar and said, "Hello, pretty lady." They were engaged eight months later, in November 1991.
Early signs of multiple sclerosis emerged soon afterward. Donna quit her job when optic neuritis caused her to go blind in her right eye. Her ophthalmologist told her the blindness, which lasted six weeks, could be a sign of multiple sclerosis, but a battery of tests indicated that she didn't have the disease at the time. At the end of '94 optic neuritis struck again, this time in her left eye. In March '95 multiple sclerosis was finally diagnosed, and she started taking an interferon called Betaseron, which was supposed to reduce the frequency of attacks. She stopped taking it after a year it because it made her anemic.
Donna's condition deteriorated after the diagnosis, though for a brief time she was able to take a job at another bar. She soon started having trouble walking. She moved cautiously, but her regular customers knew something was wrong. "They would ask, 'You OK?'" she recalls. "But they were drunk, so I'd say, 'What you talking about? Look at how you're walking.' So they didn't say anything. They kept drinking. They never complained."
But her boss fired her, accusing her of taking drugs, drinking on the job, and stealing money to support a habit. Donna protested, but her pride prevented her from telling him the truth. To be thought a drunk, drug addict, and thief somehow seemed better than being seen as someone stricken in the prime of life with a debilitating disease.
Donna started taking another interferon, Avonex, which was supposed to decrease the frequency of flare-ups and slow the overall progression of the disease. But her condition continued to deteriorate. She took a turn for the worse in September 1996, after crashing her car head-on into another vehicle at 35 miles per hour. Although no one was hurt, the collision left her badly shaken. Ashley had been in the backseat. After the accident Donna stopped driving and started spending whole days in bed. Dee came home to dirty floors, dirty dishes, and dirty laundry. He enrolled Ashley in the preschool down the street three days a week to take some pressure off his wife.
Donna eventually began to try to fight back. Fearful of burdening Dee, she fiercely guarded her independence. She refused to accept his help getting around the apartment and as a result often fell down and hurt herself. Her obstinacy aggravated him, and he became overprotective, at times "completely berserk." If she reached for a glass in the cupboard he says he would sometimes shout, "Sit your ass down! What are you doing? You're going to fall." The way he saw it, Donna was too busy fighting the disease to cope with it. As a consequence, he says, she was "fighting everybody, fighting me--just completely at war."
Donna worried that he would leave her. "You left your first wife, you left your second wife, and now you got a cripple wife," she said to him one day.
Dee did his best to reassure her he wasn't going anywhere, but he understood why she worried. He realized that if a few years before someone had described their situation he probably would have said he'd bail out. Now he could see that their lives looked worse from the outside. "It probably looks like, 'Oh my God, these poor people.' There are certain limitations, but it's not like my whole life has completely turned around. That's what everybody thinks, but it's not true."
But to Donna, who felt robbed of all the simple things, life couldn't get much worse, unless she became confined to a wheelchair. And for all she knew, that could happen any day. Living with multiple sclerosis was like "being in a dead place all the time." The uncertainty tormented her. "You don't know what's going to happen to you tomorrow. Maybe you're going to get worse or maybe you're going to get better. I wish I knew."
Donna asked everyone on the rehab ward at the hospital--patients and staff alike--about bee venom. Most patients drew a blank. A doctor lectured her about the importance and methods of proper scientific research. But a physical therapist ran a computer search and handed her a stack of articles to read. And a social worker put her in touch with a local support group that was attended by a woman named Bonnie, who used bee venom.
By the time she left the hospital Donna's spirits were soaring. The antidepressant had curbed her bouts of weeping, even made her feel good. The physical therapy along with prednisone made her feel strong. At home she was able to wash the bathroom and kitchen floors. She was able to cook beef stew.
She even agreed to use a walker provided by the hospital. She enjoyed the mobility. "I don't feel sorry for myself anymore," she said. "I don't feel worthless."
She resumed her bee-venom injections and followed Hauser's advice to "get more aggressive." He increased her dosage from "ten stings" twice a week to ten stings daily and encouraged her to alternate shots between her back, her pelvic area, and the bend of her knees.
In late February Donna went to the support group and met Bonnie. Before starting bee-venom therapy, Bonnie said, she'd been stuck in a wheelchair. Now she could walk. "Wow," Donna thought. "Why not me?"
A week or so after the meeting where she met Donna, Bonnie (who didn't want her last name used) stepped out her back door to the sound of soft humming. She walked around the side of the building to where a handful of bees darted around a hive, an insulated wooden box that contained two compartments of honeycomb--one for brooding, one for feeding. It was home to about 6,000 bees.
In the spring Bonnie would entrust the hive to her beekeeper, who lived in La Grange. She didn't want her neighbors to complain, and she wanted her teenage son to be able to shoot baskets in the backyard without getting stung.
As Bonnie approached the hive, a worker bee landed on her sweatshirt. "Come here, sweetheart," she cooed, lifting it gingerly. She placed it on her bare wrist and squeezed its head. Domestic honeybees, a hybrid of several European races, have a mild manner and usually sting only when provoked, releasing a pheromone that alerts other bees that the hive--and the queen--may be in danger. The more bee stings an intruder receives, the stronger the alarm odor grows and the more the bees mobilize to protect the hive, even though they'll die if they sting anyone.
"Come on, girl," Bonnie said, keeping the pressure on its head. The bee stung her, and Bonnie casually tossed it to the ground. The black stinger, thin as a splinter, remained embedded in her wrist. "See the sac on top?" she said, pointing to a little white mound. "That keeps pumping venom through the stinger into your system for 10 to 15 minutes."
When she wasn't showing off the hive, Bonnie usually approached it with caution, in a protective suit with a head net and elbow-length gloves. She would open the hive and remove a honeycomb, coaxing some of the bees on it into glass jars, which she kept on her living room table. Inside the jars the bees clustered in a cardboard tube, ate from a rock of crystallized honey, and drank the water she sprayed on the screen lid. With proper care the bees could live in there for a couple of weeks. The relentless buzzing was like background music, she said. She hardly noticed it anymore.
Bonnie was a young-looking 52, with gray eyes and pale skin. Her first symptoms of multiple sclerosis had resembled hot flashes. They occurred in her early 40s, and she thought they were a sign of early menopause. But then other problems developed. A former dancer, she began to worry when balancing while just walking around became an accomplishment. At 44, she learned that she had multiple sclerosis. Seven years later she was confined to a wheelchair.
Now she'd been on bee venom for a year and a half. After only three days of stings she'd noticed an improvement: she could cross one leg over the other without reaching down to lift her foot. But otherwise progress was slow. "At six months I'm like, 'I'm not wearing high heels. I want to quit.' And then I thought, 'Well, maybe I should go a little longer.' At about eight months I started having bladder control at night, and I started driving with one foot. Then I started walking. It's a very gradual therapy."
Bonnie and her mother got together three times a week for stinging sessions. Bonnie believed the points of entry should correspond to the ailing areas, so she placed bees on her mother's arthritic hands, and her mother placed bees on Bonnie wherever she couldn't reach herself: the back of her neck for sight and hearing, the lower back for her bowels and legs.
Afterward Bonnie always felt intoxicated. She enjoyed--even craved--the sensation others found excruciating. "I love it, I love it, I love it," she says, only half joking. "I get so high."
On the underground network of bee-venom therapy, Bonnie had made a name for herself. She took calls from as far away as Texas and New York and taught stinging in her home. At her busiest, she supplied about 15 patients with bees. Although she didn't charge for her services, her clients sometimes dropped five-dollar bills in the empty jars they brought to her for refills. On a typical weekend she would sit around with a couple of curious trainees who quizzed her on the correct dosage, where to have the bees sting, what to expect, and when to expect it.
Bonnie had a calming presence and spoke with self-assurance. "There's no textbook for this," she would tell them. "It's a lot of trial and error." Bonnie once increased her dose to 20 stings a session and made herself sick. "Then I did 12 stings every sting day, and I felt like I was dying. It was like overdosing on medication. I felt like I was going to throw up, like I had the flu. Then I tried the 10 stings, and the 10 stings worked. A lot of men need 30 to 40 stings per session. Women usually stop at 20 stings per session. Different strokes for different folks. It's like the disease itself--no two people are the same. The bee-venom therapy helps different people at different levels."
Donna visited Bonnie not long after they'd met at the support group. She asked many questions: How many bee stings have you had so far? Does venom help the myelin grow around the nerves? If I decide to go on the bee stings, how do I get the bees? They gonna fly in the house?
Bonnie and her mother, who'd come over for a stinging session, had many questions for Donna as well: How much venom did she inject each week? Where did she inject it? Which medications did she take? Donna told them that she received the equivalent of ten bee stings a day on her back only. At Hauser's suggestion, Dee had attempted to inject the bend of her knee. But the pressure of the needle caused her legs to spasm, and Dee had trouble injecting the solution; they worried that one of them would get stabbed.
Donna also told Bonnie she was still taking Avonex and Paxil. At the support group Bonnie had told Donna she wouldn't start people on live bees while they were taking drugs. "That may be why the bee venom doesn't seem to be helping you," she'd said. "It has to work hard to get through those drugs."
Bonnie and her mother also told Donna that her bee-venom dosage was too high, and that she needed to sting all over her body. They spoke in absolutes. There were things you did and didn't do if you wanted the bee venom to make you well. Vitamins--at least 4,000 milligrams of vitamin C a day--were essential. Diet--Bonnie ate only health food--mattered immensely. Live bee stings were more potent than injections. Essentially, they told Donna, you're doing everything wrong.
Donna left Bonnie's with a stack of materials to read, including Pat Wagner's book, How Well Are You Willing to Bee? Donna started taking 4,000 milligrams of vitamin C a day, multivitamins, and vitamin B12. She asked Dee what he thought about switching to live bees, and he told her to listen to Hauser, not some woman and her mother. Besides, he said, he didn't want live bees around Ashley. Donna figured he was right, and that perhaps bee venom just didn't work on her the way it worked on Bonnie.
When Dee's 13-year-old son, who lived in Arkansas with his mother, visited them last spring, the McGhees treated him to dinner at Michael Jordan's Restaurant. They were also treating themselves. In a sense it was the walker's public unveiling. Donna would use it to accompany Dee on an errand here or there and dust it off for doctor's appointments, but she'd refused until now to take the walker out for a social occasion.
As the host escorted them to their table, Donna grew nervous. Her arms trembled, and the walker wobbled under her. Everyone seemed to be staring.
"Don't worry. Just slow down," Dee said.
"Are they looking at me?" Donna asked.
"Who cares if they are?"
Dee walked behind Donna, ready to catch her if she fell.
"Are you embarrassed to be with me?"
The question irritated Dee. "I'm here, ain't I?"
Donna made it without incident to the table, but she never fully relaxed and enjoyed herself.
Donna felt as if she was in the wrong lane of traffic, idling as others sped past. About four months after she started the bee-venom shots she learned that other people in the study were improving. And none of them, Hauser's nurse told her, used lidocaine. Jim Zack, who'd stopped taking Avonex around the time he started the bee-venom injections, had noticed after two months that the tingling and numbness in his hands had subsided and that he no longer dragged his left foot when he walked. Now he even used a walker instead of a wheelchair to go short distances. "My joints feel like they've been sprayed with WD40," he reported.
Bonnie was right, Donna thought. She'd been doing it all wrong. Donna began to wean herself off the lidocaine, and she asked Hauser if she should also stop taking Avonex. He too suspected that medication interfered with the body's response to bee venom, but he didn't feel free to tell her. Instead he gave an ambiguous answer that made her wonder if he really had her best interests in mind. Later, Hauser explained, "I'm not in a position to tell people to stop their other medications, because they have another doctor, and that's between them and their doctor. Now I can exclude people from my study because of that, but I really should have one or two people in the study who are on [Avonex]."
Donna was losing faith in Hauser the way she'd lost faith in her other doctors. She felt more like an "experimental rabbit" than ever. Bonnie, she thought, seemed to speak with more authority and seemed to have nothing to gain.
So Donna purged. Out went the lidocaine. Out went the Avonex. Out went the antidepressants--"I wouldn't be depressed if I could walk without a walker." Out even went her neurologist, who'd made her feel ridiculous when she finally got up the nerve to tell him about the bee venom. "I'm gonna call Bonnie and tell her she knows more than the doctors," Donna said.
Suddenly Donna's goal of "throwing this piece-of-shit walker out the window" seemed attainable. "I believe one day I can walk out the door without it, and I'm gonna ask my husband not if he's embarrassed, but to go somewhere and dance."
Every time something gave Donna hope, something else threatened to destroy it. Dee finally agreed to work with live bees, but he also asked Donna to use a wheelchair. "It's not because you have to have it," he told her. "It's so we can go places." The idea had occurred to him one day after he and Donna entered a department store on the wrong floor, far from where they were going, and he almost had to carry her.
Bonnie offered to sell Donna her old wheelchair, since she had no use for it, and in early May the McGhees went to pick it up. While there, they'd decided, they would learn to use the bees.
On the way to Bonnie's Donna sat stone-faced in their Jeep Cherokee, scared and impatient--and angry that no pill could make her well. At a red light a dark green convertible pulled up beside them, top down. Dee glanced over at it. "One of these days, Donna, we're gonna be riding around in one of those." He paused briefly, then laughed. "We're gonna rent one."
"One of these days, you know what I'm going to do?" she shot back. "I'm going to take a bus, and I'm going to walk. I don't want a Cadillac convertible. I don't want anything. I want to take a bus or a train, and I want to walk."
Donna was so worked up, so shaky when they arrived that Bonnie felt compelled to tell her she looked worse than the last time they'd seen each other.
"It's warmer," Donna said. Bonnie, and everyone else with the disease, knew all too well that warm weather often exacerbated the symptoms. Dee helped Donna down the steps that led to Bonnie's living room, where she kept the jars of bees. Donna sat in the nearest chair and asked Bonnie for reassurance. Was she doing the right thing? Would the bees really help her? "I can't, in good conscience, make promises," Bonnie said, "but I think you're going to be real amazed."
Dee, who would be handling the bees, couldn't recall ever being stung, so Bonnie offered to sting one of his knees, where he had mild arthritis, to test for an allergic reaction. Bonnie sprayed water into a jar of bees, wetting their wings so they couldn't fly away when she removed the lid. Dee watched closely as she grabbed a bee with tweezers and set it in a small aluminum-foil dish. The furry black-and-gold insect wriggled on its back until Bonnie pinched its head between the tweezers' prongs. She left it there, legs pedaling, while she numbed Dee's knee with a cold steel bar. She then lifted the bee to Dee's knee, and it stung. "That's it?" Dee asked, unfazed. "Did you sting me? Really?"
After a few seconds, Dee looked a bit flushed, but he silently bore what had quickly become an irritating discomfort. After 15 seconds passed, Bonnie removed the stinger. Though the sac hadn't emptied its entire load of venom, it had released enough to produce an allergic reaction. Bonnie always kept an epinephrine kit on hand, just in case. "We'll wait 15 minutes and watch your breathing," Bonnie said. "If you're going to have trouble breathing, it's going to happen within 15 minutes."
When it was clear that Dee wasn't allergic to the venom, Bonnie moved on to showing him how to sting Donna.
"OK, let's do it, because I'm already a nervous wreck, you know," Donna said. She stripped off her pants, lay face down on the couch, and mumbled, "God, I just hope it works on me."
"Just don't expect it to all work tomorrow," Bonnie said. "You know, I didn't get rid of my cane for 13 months. It doesn't happen overnight. It doesn't happen fast, I'll tell you that."
Bonnie placed a small ice pack on the right cheek of Donna's backside. Ashley sat nearby, watching curiously as Bonnie replaced the ice with a bee. The sting made Donna's leg twitch violently. She sucked in air and hugged a pillow.
"Good gosh, Donna, how you gonna take nine more of these?" Dee asked.
"You surviving?" Bonnie asked.
"You OK?" Ashley said, sounding worried.
Donna smiled, kissed her daughter's round face, and whispered something to her in Polish. She then distracted Ashley, asking, What's your address? What's your name? What number are you going to call if something happens to mommy?
As Bonnie and Dee worked their way down Donna's leg, leaving a trail of stingers, the leg thrashed about in sharp, uncontrollable movements.
The sight made Ashley panic. "Don't do it. Don't do it. It hurts," Ashley pleaded with her father.
"It doesn't hurt," Donna said. "Anybody can sting me if I'm gonna walk again." But Ashley noticed tears welling up in her mother's eyes and began to cry. "I tell my daddy don't do that!" she screamed.
Dee was trying to concentrate. "Ashley, quit whining," he said.
"Baby, listen to mommy. You're big enough. Mommy will be OK. You know why mommy's doing this? So mommy can walk, OK?"
Ashley eventually calmed down, and Dee finished the ten stings as Bonnie caressed Donna's back. Donna lay on the couch for the next 15 minutes, as the venom pumped through her. Ten dark stingers stuck out of ten swollen red mounds.
Donna had once said she could tolerate the uncontrollable bladder, the tingling sensation in her legs, the ice-cold feet, but that she could never feel "100 percent woman" if she couldn't dance with her husband. Now she imagined the two of them on a dance floor. She would lean on him not because she was off balance, about to collapse, but because the rhythm moved her to do so. She turned to Dee and said, "You know where I wanna go, Dee? Bamboo Bernie's, that's where I want to go."
The McGhees left Bonnie's with a jar of about 150 bees, ice packs, tweezers, and the wheelchair, which Bonnie had dubbed the "lucky chair," since she'd risen from it on her own two feet.
Donna dropped out of Hauser's study, having received the equivalent of 480 stings, and started over counting only live bee stings. "If someone would have told me eight years ago that I'd be in the United States stinging myself with bees," she said, "I'd never believe it--the U.S., they have medicine there."
Hauser wasn't that disappointed that Donna quit, noting that medical subjects often don't honor their commitments, because a new drug lures them away or the side effects get to them. "I always want what's best for the patient," he said, "and I believe a lot of times the patient knows what that is." But he did wish that the free venom he'd given Donna hadn't gone to waste.
Word of Hauser's study had spread after the original ten slots were filled, and it's now open to anyone willing to pay for the venom. A total of 47 patients have signed on from places as far away as Arizona. Some have already sent Hauser reports of progress. After ten shots a judge from Missouri wrote, "I was able to walk two blocks to the store...and return to the courthouse without having my leg refuse to be lifted off the sidewalk. Doesn't sound like much unless you are getting accustomed to dragging your leg."
A nurse from Missouri wrote that she had more energy. She also said that the tingling sensation throughout her body and severe pain under her left shoulder, which she'd had for nine years, had ceased. But twice the symptoms returned, and twice Hauser instructed her to increase her dosage, which seemed to help.
By the time Donna started with the live bees her condition had declined to a new low. In May her mother came for a monthlong visit and cooked, cleaned, and cared for Ashley. In that month Donna grew reliant on the wheelchair and stopped using the walker altogether.
The humidity of summer began exacerbating Donna's symptoms. Wobbly and knock-kneed, her leg muscles atrophying, she couldn't even stand at the sink to wash fruit. Dee asked her not to drink Perrier while he was at work, afraid that if she dropped the glass bottle she wouldn't be able to pick up the shards and Ashley could cut herself.
Donna and Dee kept the bees on the windowsill in the kitchen. After Ashley went to sleep on Mondays, Wednesdays, and Fridays Dee faithfully followed the stinging instructions in Pat Wagner's book. The bees were more precise and less painful than the needle, and the stinger withstood the spasms that made using a needle in certain areas--abdomen, feet, and ankles--dangerous and difficult.
Soon after starting with the live bees, Donna called Wagner for support. Wagner reminded Donna that she'd once been bedridden. Donna felt alternately relieved and impatient after talking with her. She now calls Bonnie a few times a week. "She wants to be better tomorrow," Bonnie says.
Within a couple weeks of switching to live bees, Dee came home from work and found Donna sitting on the bed with her left arm outstretched. He watched as she drew her pointer finger steadily in toward her face and landed it perfectly on the tip of her nose. Two and a half years ago in her neurologist's office she'd failed this very test and had learned she had multiple sclerosis. She'd attempted it many times since, but she invariably failed, poking her eye, her cheek, or her forehead before finding her nose.
Her feet, which had been icy cold, thawed out. Her left one revitalized after five stings. The right one was stubborn at first, but after 20 stings she noticed a difference. Both feet now feel as warm as Dee's.
After 16 stings to the pelvic area, Donna began sleeping through the night without wetting the bed. She has fewer accidents in the day as well, since she now can tell when her bladder is full.
The progress has made Donna happy, but she says euphoria will have to wait until she regains use of her legs. Little by little, she reminds herself, others have gotten their lives back. "If the bee stings help me with these things, why wouldn't they help me walk?" o
Art accompanying story in printed newspaper (not available in this archive): photographs by Randy Tunnell.