Grabbing a mystery disease by the neck

The disease broke South Lake Tahoe chiropractor Paul Whitcomb. Now he is breaking it.

Whitcomb operated a large chiropractic clinic in Orange County until fibromyalgia, a debilitating condition that causes hypersensitivity of the nervous system, left him with so much fatigue, pain and depression that he lost everything he had worked for.

"I went from a 10-doctor, 25-person staff down to losing everything I had, essentially," Whitcomb said. "The first two years (the fibromyalgia) was extremely severe. The next three years it slowly let up."

Whitcomb said he thinks adjustments from other chiropractors - a profession that involves the manipulation of the spine and other body joints to restore normal nerve function - helped him recover from his disease, but the exact cause was not clear.

Today Whitcomb is clear about one thing, that he is helping 95 percent of his fibromyalgia patients recover and feel well enough to lead normal lives.

Physicians and other chiropractors informed of his recovery rate were skeptical, but none dismissed it - probably because so much is unknown about the disease, which affects more than 6 million Americans of which about 90 percent are women, according to the National Fibromyalgia Research Association.

Whitcomb's treatment, patients say, eliminates the chronic body pain and headaches, irritable bowel syndrome, insomnia, cognitive difficulties, blurred vision and depression associated with the illness.

"It's so debilitating on so many different levels," said Rudy Bellinger, 47, a Denver civil engineer, whose wife was one of Whitcomb's patients. "To see it all straighten itself out in a short period of time is just amazing."

Rudy's wife Wendy said she has had fibromyalgia since 1996, but her symptoms worsened after a car accident in April 2004.

"It's absolutely amazing. It's wonderful," Wendy said. "I went to 16 other doctors. I'd say he's given me my life back. It's the difference between being permanently crippled and being able to heal. What he did for me nobody else has been able to do."

A little-known disease

Fibromyalgia patients are typically examined by a slew of doctors before being diagnosed with the illness. Many doctors refer people in agonizing pain to psychiatrists, leading them to believe that fibromyalgia is their fault. Some people with the disease commit suicide or at least contemplate it, according to Lynne Matallana, president and founder of the National Fibromyalgia Association.

The medical profession only started to accept the disease as a real diagnosis about five years ago.

"A lot more doctors understand and accept it," said Matallana, who estimates 60 percent of the people who have the disease experienced head or neck trauma.

Even after someone is diagnosed with fibromyalgia, physicians have to inform their patients there is no cure for the disease and then most often prescribe them pain killers, sleeping pills, antidepressants and muscle relaxers.

"I've done just about everything, and nothing ever helped me," said Elizabeth Pollard, 55, a registered nurse on leave from work who traveled from Florida to reach Whitcomb. "They give you the pills. That's all they do."

The path to his method

Whitcomb has developed and refined his chiropractic method to treat fibromyalgia since opening his South Lake Tahoe office four years ago.

He was motivated to find a cure because the illness had such an impact on his life. And as a chiropractor for 30 years, having treated the necks of more than 6,000 car accident victims, he knew, as did others in the medical field, that trauma and fibromyalgia were linked.

"I wanted to find out what was causing it," Whitcomb said.

He moved to Gardnerville in 1996 and broke away from chiropractics for a while to explore ways to fight the disease through nutritional supplements. Today fibromyalgia doctors and other experts say a healthy diet is one of the best ways to control symptoms of the disease. Whitcomb said the supplements, which he still gives to his patients today, helped lessen the symptoms of the disease but didn't provide headway in identifying its cause.

The breakthrough, he said, came in 2000 after he opened his chiropractic clinic at South Shore. A couple involved in a car accident sought treatment from him; both had developed fibromyalgia subsequent to the accident.

"This, I thought, was a golden moment, as it gave me the chance to cross-check so many things and hopefully find common denominators that could be the cause of their condition," Whitcomb writes in his unfinished book. "I found that both had severely displaced C-1 vertebrae in a position that is found in less than 2 percent of our patients. But to make it worse, this malpositioning was much more severe than what is normally seen. I immediately checked my other patients and found the same condition."

The treatment

Since Whitcomb posted a Web site about his work last summer, very sick fibromyalgia patients, many who can barely walk, have traveled from throughout North America and from as far away as England to be treated by him. Most come across the Web site, www.stopfibro.com., using the Internet search engine Google.

There they learn his explanation of what causes the disease and it, they say, has an appealing logic. Fibromyalgia, the chiropractor said, develops when the top vertebra of the spine, C-1, is knocked out of alignment and puts pressure, or impinges on a three-layer membrane that covers the spinal cord and brain called the meninges.

Impingement in the area where the spine meets the brain, according to the chiropractor, causes nerve roots to fire involuntarily, amplifies pain signals and has a devastating effect on the body.

"These are some of the sickest people in the world," said Whitcomb, 56, whose office is next to Freshies Restaurant & Bar at 3330 Lake Tahoe Blvd. "Almost every patient has at least contemplated suicide. It's much worse than cancer. You get to die. These people want to die and can't."

His secret? Repeated neck adjustments designed to realign the top vertebrae and correct its relationship to the skull. The treatment - up to three times a day, five or six days a week, for one, two or three months - realigns the vertebra so it does not impinge on the meninges.

The repetitive adjustments, according to the Whitcomb, train ligaments in the neck to hold the vertebra in the correct position. Follow-up care is typically not needed if his patients allow the bone to set by not doing things like bicycling, lifting or anything that might strain their necks for six months.

He does recommend that his patients continue to get deep-tissue massages after they leave him to help their bodies' overstimulated muscles finish unwinding. The massages start about halfway through his adjustment regime and are done by his wife, Elena.

Whitcomb decided to go public with his work only after he became certain he was helping fibromyalgia patients get well.

"I can't keep it to myself," he said. "It's like a dream. I still don't believe it myself. Almost everybody gets well. I'm in shock. If they come here and finish the treatment, essentially they will get well."

A common affliction

While the National Fibromyalgia Research Association report the disease affects 6 million people, other fibromyalgia groups and researchers say they believe that number is higher - 10 to 14 million Americans -because of misdiagnosis or underdiagnosis.

Experts said the disease, which often leaves people bedridden but unable to sleep, can be triggered by trauma from a car accident or fall, stress, infection or genetic predisposition. Surgery can also lead to fibromyalgia, according to the chiropractor. He said that anesthesia required for surgery, which causes the body to go limp, can combine with certain neck positions or movement to dislodge the top vertebra.

Spreading the word

Whitcomb is writing a book about his work, plans to have researchers study it, and within the next year wants to begin teaching other chiropractors in the country his method. He said he knows spreading the word and training people properly will be difficult.

"It's a grassroots project. If we do it properly and spread it around the world ..." said Whitcomb, pondering the possibilities. "My fear is that (the treatment) gets a bad name and it crumbles. We are going to have some fights with the medical profession I'm sure."

The chiropractor says many of his patients start to feel better in the first week of treatment. Treatment takes longer, up to three months, for more severe cases. The 5 percent of people he is not able to help either don't have fibromyalgia or didn't fully commit to his program, Whitcomb said.

By now he has treated more than 100 people with fibromyalgia. He can handle about 15 patients at his clinic at one time, and each pays about $6,500 depending on the severity of their condition.

Whitcomb said he does treat some sick people who can't afford his program, but his goal is to build up his practice so he has the resources to teach other chiropractors his method. Eventually he envisions fibromyalgia patients being able to tap into grant funding to pay for their treatment.

"I feel guilty I'm not getting this out more quickly," he said. "It's very difficult for me. But this needs to get out. The hardest is when people call up and don't have money."

A doctor gets better

Whitcomb treated one of his most severe cases in 2002. It involved a physician on the East Coast who was an old friend. A car accident left Dr. Cynthia Baird, a preventive medicine physician and addiction specialist in Cherry Hill, N.J., with so much pain in her neck, back and legs that she couldn't work.

The pain forced her to sleep on a piece of plywood with a thin blanket over it on the floor of her family room. Her condition worsened to the point that she lost use of her right arm - it lay curled on her chest - and she could hardly walk.

"I think fibromyalgia is a wastebasket-type diagnosis utilized for a group of patients with a constellation of symptoms, some of which are caused by trauma they experienced," Baird said by phone Thursday. "I had multiple different injuries. What Dr. Whitcomb did for me was fix a major neck problem I had."

While in New Jersey to work on Baird for three days, Whitcomb said he realized multiple treatments each day could help people get better more quickly.

Before he left for home, Whitcomb trained a chiropractor so he could continue to make neck adjustments on Baird. And she has shown improvement. Today she is back on the job and hasn't needed neck adjustments for two years.

"I just got so much relief," Baird said. "It is important that the word gets out there. This is a very big deal and especially a big deal for the chiropractic field to learn more about the particular manipulative treatment that Dr. Whitcomb is using so it can be more widely available."