It's been months since dancer and former gymnast Nicole Goodman of Pocasset has been able to do a forward jazz slide or a kick ball change move.
The 18-year-old fell ill weeks after receiving her third Gardasil shot, and she blames the vaccine for the human papillomavirus for putting her in a wheelchair.
But weeks after receiving the third shot of the Gardasil vaccine, Goodman found herself in a downhill health slide. A charley-horse-type pain in her right leg led to spasms and tremors. She experienced fainting episodes, an irregular heartbeat and nausea so severe that she lost 15 pounds in one month and had to go on intravenous fluids.
Her left leg and foot are now stuck in a sort of permanent spasm, and Goodman says she developed a red rash on her upper body around the same time.
"So many girls have that rash," she says.
Goodman is referring to the "Gardasil Girls," an informal nickname for girls and young women who believe they have been injured by the Merck vaccine that was approved in 2006 and has been heavily marketed as a preventative for cervical cancer.
Their numbers include Rachel Whiting, 17, of Orleans and Madeline Wunder, 17, of Brewster, both students at Nauset Regional High School who experienced autoimmune-type disorders shortly after receiving Gardasil injections.
They says their side effects include digestive problems, rashes and severe muscle pain, among other ailments. "It's just a nightmare," says Rachel's mother, Kim Whiting. She brought her daughter to Boston last week for a bone marrow biopsy and other tests to find out why Rachel's lymph nodes are so inflamed.
"She's in pain every day," Donna Wunder says of her daughter, Madeline, a competitive figure skater.
Wunder is convinced that Gardasil caused her daughter's symptoms, and she says she wishes she'd never approved the shots.
"I got sold the whole bill of goods that this is wonderful," she says. Wunder says Madeline had to drop out of a major skating competition this month because she can no longer land jumps or handle a four-minute routine.
As concerns over the safety of the vaccine that has been given to millions of American girls and women heat up, Merck, the Centers for Disease Control and Prevention, and the Food and Drug Administration say the vaccine - given in three separate shots - is safe and effective, with side effects including pain at the injection site and risk of fainting.
"We are confident in the safety profile of Gardasil," says Merck spokeswoman Jennifer Allen. "The benefits outweigh the risks."
A study that appeared in August in the Journal of the American Medical Association found that injections of Gardasil in the general population had resulted in a greater risk of blood clots and fainting than appeared in the clinical trials. It said the overall risk of other side effects was comparable to other vaccines.
But parents, vaccine safety advocates and even a doctor who worked on Gardasil trials as a paid consultant for Merck are questioning whether the risk of a widespread vaccination campaign is worth the benefit of hoped-for protection against cervical cancer, which in the U.S. is a rare killer of women.
The Centers for Disease Control recommends the HPV vaccine for girls starting at age 11 and says doctors may give it to girls as young as 9.
Gardasil vaccinates girls and women against four types of HPV, including two types that cause about 70 percent of cervical cancer and two types that cause about 90 percent of genital warts.
It's an expensive vaccine. A series of three shots costs $360, not counting administrative and office fees. Insurance usually covers the cost.
The problem is there's no proof that Gardasil is effective after five years, so there's no point in vaccinating such young girls, says Dr. Diane Harper of the University of Missouri in Kansas City. She was hired by Merck as a consultant to design phases 2 and 3 of Merck's clinical trials.
"There will be zero change in cervical cancer (rates)," Harper says. "This whole concept of targeting 11- to 12-year-olds is a myth."
She's also concerned that women who receive the vaccine will get a false sense of security and forgo regular Pap smear tests, which detect most cases of cervical cancer.
The $30 Pap test is credited with cutting the cervical cancer death rate in the United States by 74 percent from 1955 to 1992. Currently, about 4,000 women are expected to die of cervical cancer in this country in 2009, and the New England Journal of Medicine says at least half of those deaths are among women who have never or seldom had a Pap smear.
Still a major killer in developing nations, cervical cancer no longer appears on the top 10 list of fatal malignancies among American women.
"Getting the vaccine in the U.S. is not going to make one less cervical cancer victim," Harper says, referring to Merck's advertising campaign slogan. "That is entirely marketing."
By this summer, there were more than 15,000 reports of Gardasil vaccine reactions, including more than 3,000 injuries and 48 deaths, says Barbara Loe Fisher of the National Vaccine Information Center, a vaccination watchdog group.
She says a study by her organization shows that Gardasil has resulted in more adverse reactions - such as stroke, blood clots, cardiac arrest, seizures, fainting and lupus - than occur after Menactra vaccinations against meningitis.
And Gardasil reactions may be underreported, Fisher says. She says doctors don't always take patient reports of Gardasil reactions seriously, and that's a problem, because reporting to the federal Vaccine Adverse Event Reporting System is done on a volunteer basis.
While doctors are required by the National Childhood Vaccine Injury Act to report potential adverse reactions, the act lacks teeth, Fisher says.
"Many doctors write off Gardasil-related hospitalizations, injuries and death as just a coincidence and do not report. Labeling bad things that happen after vaccination as a 'coincidence' minimizes the risks of vaccination," Fisher wrote in a report on the reporting system's Web site.
The three young Cape women who say they were injured by the Gardasil vaccine have struggled to get the medical community to take them seriously. Two of the young women responded to a Cape Cod Times online question about people's experiences with the Gardasil vaccine, and one of the families put the reporter in touch with Wunder's mother.
The teams of physicians who treated Madeline Wunder at Children's Hospital agreed that something catastrophic must have happened to cause the extreme nausea that put her on acid blockers, the muscle pain that at one time required morphine, and the "roaming paralysis" that sometimes cramps her hands into claws and numbs her feet, Donna Wunder says.
Doctors asked if it could have been a fall on the ice, she says. "They didn't want to hear about the shot."
Finally, in April, a rheumatologist at Children's Hospital wrote that Madeline most likely was suffering from postviral fatigue syndrome. Without explaining, he wrote that "it was possible" but "not very likely" that her Feb. 9 Gardasil and Menactra immunizations triggered the symptoms.
There is some evidence that having those two shots together increases the risk of side effects, Fisher says.
Rachel Whiting's pediatrician didn't think her second Gardasil shot in January had anything to do with her fevers, joint pains and debilitating hives, her mother, Kim Whiting says, and has not reported the possible adverse reaction. But a second Children's Hospital rheumatologist told her she would report it to VAERS if no one else has, Whiting says.
Despite Goodman's severe physical limitations, she says most of her physicians do not consider Gardasil a possible culprit.
Doctors at Children's Hospital told her she has a "conversion disorder," in which stress causes physiological symptoms, Goodman says. She says her ailments have been getting worse for months, ever since she got her third Gardasil shot.
Seated at home in a hospital bed with the words "love," "live" and "laughter" pasted to the blue bedroom wall above, Goodman says she had migraine-type headaches after the first two shots but didn't consider them possible side effects.
Shortly after the final shot she experienced a flurry of symptoms - including a fainting episode after driving her car - that eventually disabled her. "I haven't walked in six months," Goodman says.
She pulls up a pants leg and points to her left leg, which looks as if it's about to launch the former gymnast and cheerleader into a midair jump.
Her calf is knotted and her left foot is stuck in an arched position. Meanwhile, her right leg reverberates with periodic tremors.
A physician at a pain clinic at St. Anne's Hospital in Fall River said her muscle tone was so low it almost looked as though she had been born with cerebral palsy, Goodman says. She says he advised her to pursue the Gardasil connection but didn't tell her how.
The constellation of symptoms described by the three Cape teens and their families is typical of complaints reviewed by the NVIC, Fisher says. Many of the afflicted are athletes like Wunder and Goodman.
"You have to take it very seriously," she says. "These are high-functioning girls."
Fisher says it's possible that the young women's bodies are getting caught in an inflammatory process that affects their brains and immune systems.
"Why is it the healthy girls?" Fisher asks. "We don't know."
Autoimmune disorders are known to occur in teenage girls and young women, but there is nothing to suggest they are caused by the Gardasil vaccine, Allen says. "We encourage people to report adverse effects in any way they can."
Harper, in the meantime, suggests the vaccine be reserved for women 18 and over who carefully weigh risks and benefits.
Although the vaccine is approved only for women up to age 26, Harper says data indicate it will work just as well for women who already have had abnormal Pap smears.
"Gardasil is not safe for everyone. It's safe for most people," she says.
Gardasil came on the market with much fanfare, and the word "mandate" was used in many discussions. But plans to vaccinate all sixth-grade girls in Texas, for example, were dropped after parents balked at a gubernatorial executive order, Fisher says. Virginia and the District of Columbia mandate the HPV vaccine for schoolgirls, she says, but parents can "opt out" of the provision.
Although plans for large-scale HPV vaccine largely have died down, Merck is still taking jabs for heavy-handed marketing of the new vaccine.
The pharmaceutical company paid doctors several thousand dollars per talk to chat up the vaccine to fellow physicians, Harper says. She says Merck provided the physicians with slides that didn't mention adverse reactions.
"Merck controls the information flow entirely," Harper says.
A JAMA editorial took the drug manufacturer to task for playing up the risk of cervical cancer to adolescents and downplaying the sexual transmission of HPV.
"The subpopulations most at risk were practically ignored," according to Drs. Sheila and David Rothman, authors of the editorial.
For a while it seemed as if parents couldn't get away from magazine ads and TV commercials urging them to make their daughters "one less" cervical cancer statistic with the Gardasil vaccine, Wunder says.
You felt "you're a terrible mother if you don't do this," she says.
All three families interviewed for the story say their daughters' doctors championed the vaccine without mentioning the possibility of severe reactions.
Get ready for more marketing, Harper says. The FDA has approved GlaxoSmithKline's new HPV vaccine for women, Cervavix, as well as Merck's new vaccine to protect boys against genital warts.
"Merck is going to come out gangbusters promoting that," she says.
Since men transmit the HPV to women, the male vaccine is seen as a public health triumph by some.
Kim Whiting says she doesn't want to see other girls or boys go through what her daughter Rachel is experiencing.
"She is so sick. She has a bag of pills she has to take throughout the day. They still don't work. I told the pediatrician, 'I can't believe you're still giving it.'"