A Classic Case of Lyme disease

Hi everyone,

What a great weekend for good articles concerning Lyme disease. This is a story that is familiar with many who are battling this disease. This one one comes from California. Pamela O'Kane knows what it is like to have Lyme disease. Enjoy this story of courage and perserverence.

Be well,

Richard




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Triumph of her will
smcmanis@sacbee.com
Published Sunday, Aug. 09, 2009


She wouldn't use the wheelchair. Anything but that. The bulky walker was bad enough, but at least she could retain a semblance of her former mobility.

Yeah, Pamela O'Kane was determined – stubbornly so – to get back to normal life after another stay at the hospital. This one lasted 10 days in the late summer of 2007, and doctors still had no definitive diagnosis to explain and treat the uncontrolled, episodic spasms in her legs and arms, the partial facial paralysis, the weakening of her reflexes and the troubling 35-pound weight loss.

O'Kane, a 48-year-old instructor at California State University, Sacramento, suspected that she had somehow contracted Lyme disease – a potentially debilitating infection transmitted by ticks – at some point in 2006. All the symptoms were there, and her Lyme disease specialist detected two co-infections that usually accompany the disease. But three times the test for Lyme disease came back negative.

Which frustrated O'Kane to no end. Here was this perfectly healthy woman – a national-qualifying age-group triathlete, no less – rendered nearly an invalid who could barely stand up to conduct her teacher education classes without succumbing to fatigue, breathing problems and spasms.

Specialists had tested her for a medical dictionary's worth of maladies. The spinal tap for Lou Gehrig's disease came back negative, as did the scan for multiple sclerosis. She saw her gynecologist for a cervical cancer test, a pulmonary specialist for a lung cancer screening, neurologists for all types of central nervous system disorders.

Negative, negative, negative.

One doctor even suggested anti-depressants, thinking O'Kane was suffering from psychological problems. O'Kane, however, knew the problem was in her central nervous system, not "all in my head."

Still, just before this latest hospital discharge, the neurologist at the hospital told O'Kane's mother, Virginia Wilbur, and her older sister Denise Wilbur DeTrano that O'Kane's condition would only worsen, and a wheelchair was advisable.

"They told me I was going to be disabled," O'Kane recalls. "They said it would get progressively worse."

O'Kane had other ideas. During the hospital stay, she had read a story in The Bee about women climbing Half Dome, that 2,000-foot-high granite monolith in Yosemite, and she vowed to do it herself within a year.

"Pamela, you can't even walk across the hallway," Denise told her. "What makes you think you can climb Half Dome?"

"I will," O'Kane said tersely.

A year later, she and Denise had reached the goal, arms raised atop the granite slab. Just for good measure, the pair ascended Half Dome again this summer.

But O'Kane says it took more than dedication and grit to get her body back close to pre-illness shape.

Rather, she had to put aside her skepticism and commit fully to a controversial Lyme disease treatment plan that she had hesitated to enter because she technically had never been diagnosed.

It involved long-term antibiotic treatment – open-ended, depending on her response to it – through an IV line implanted in her left arm. This goes against standard treatment recommended by three medical organizations: the Infectious Disease Society of America, the Centers for Disease Control and Prevention, and the American Academy of Neurology.

In a 2007 study published in the journal Neurology, researchers found that for patients with neuroborreliosis (Lyme disease that affects the nervous system), the treatment was effective only during a 14- to 28-day window. Long-term use of antibiotics has been linked to side effects such as blood clots, bloodstream infections and diarrhea.

Yet many Lyme patients (and those, like O'Kane, who exhibited symptoms but were not officially diagnosed) report that a six- to eight-month regimen of antibiotics helped them. And San Francisco physician Raphael Stricker, who has treated 1,800 Lyme disease patients, says he's seen patients cured by long-term antibiotic use.

"For patients with persistent symptoms based on persistent infection, unless they're treated long-term with antibiotics, they aren't going to get better," says Stricker, who did not treat O'Kane. "There is a lot of evidence from animal and human studies that there is persistence in infection (with Lyme), and the only way to get rid of it is long-term antibiotics."

O'Kane knew that prolonged use of antibiotics could be harmful, but she also knew that it was effective.

She underwent six months of treatment from January to July 2007. While taking the drug, she still had hand and facial tremors and had yet to gain back weight, but the severity was greatly diminished, and O'Kane could go about teaching and participating in triathlons.

What gnawed at her, though, was the fact that she'd never been diagnosed with Lyme. All those negative tests couldn't be wrong, could they?

That summer, she says, "I decided to take myself off it and detox. I wanted to try this on my own. Everyone told me, no, no, no. But I said, 'This is it.' "

About two weeks off the medication, she called her sister.

"She said that her feet were turning in – foot drop like people with cerebral palsy have," DeTrano recalls. "Fifteen minutes later, she calls me and says, 'I can't walk.' I had to go and carry her into the ER."

After that prolonged hospital stay, the one in which neurologists said she might be permanently disabled, O'Kane was eager to go back on antibiotics. She recalls being in the Lyme specialist's office, and her feet were spastically moving so much "it was like I was tap-dancing on the floor."

Even with just the initial dose of antibiotics coursing through her system, O'Kane said she felt better. She tossed aside the walker and never used it again. Not long thereafter, she was running, swimming and biking.

She regained her strength and stamina, if not all the weight she lost. Still, through rehab with a personal trainer that includes weight training, O'Kane has 12 pounds of muscle mass, according to her latest hydrostatic weight test.

Ironically, after feeling better, O'Kane finally tested positive for Lyme in January 2008.

"She's a classic case," Stricker says. "The commercial testing for Lyme is, in a word, terrible. They miss more than half the cases. Compare that to the sensitivity of AIDS testing, which is 99.5 percent (accurate). The tendency is for doctors to say, 'I guess you don't have Lyme disease. It must be something else.' "

O'Kane just seems happy to have finally cleared the major health hurdle. Now back to running seven-minute miles and churning on the bike, O'Kane believes exercise has hastened her recovery. But she admits that she still has problems, episodic tremors mostly.

"It's like somebody who suffers a stroke and recovers, but only to a certain point," she says.

She's learned to deal with the new normal.

"I seem to have a high sensitivity for odors," she says, explaining her current state of health. "If somebody's mowing their lawn, I'll start to moan.

"It's strange, I know. And changes in temperature, going from really hot to really cold will set off facial tics and moaning.

"When I first started getting back to triathlon, getting in the water, I'd start to tremor. Every morning, just putting my hands under the water to wash blueberries, it'll set off the shakes. It's embarrassing, but I've learned to cope."


MORE INFO

According to the Centers for Disease Control and Prevention, California's Lyme disease cases amounted in 2007 to only 0.2 per 100,000 residents. The disease is most prevalent on the East Coast but has been detected in 56 of California's 58 counties.

• What causes Lyme disease: It is transmitted by infected ticks carrying the bacterium spirochete. The ticks attach to human skin and feed on the blood supply.

• Early symptoms: Mild flu-like symptoms, usually accompanied by a red, expanding skin rash. Turns into chills, fever, headaches, swollen lymph nodes, muscle and joint pain, fatigue and heart irregularities. The rash can appear up to 30 days after the bite. Some patients report never finding a rash.

• Long-term symptoms: Arthritis and central nervous system disruption that can result in tremors and spasms, chronic fatigue, facial paralysis, numbness and tingling in the limbs, inability to concentrate.

• How to avoid Lyme disease: Stay in the middle of trails, avoiding grassy areas and contact with logs, tree trunks and fallen branches in forests. Tuck your pants into boots or socks and your shirt into pants. Use a repellent, such as DEET, made to combat ticks. Check yourself thoroughly immediately after hiking and up to three days afterward.

• How to remove ticks: Using tweezers, grasp the tick's mouthparts as close to the skin as possible and gently pull the tick straight out. Wash your hands and the bite site with soap and water. Apply antiseptic to the site.

Source: California Department of Public Health, Division of Communicable Disease Control

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Thanks to the Sacramento Bee Newspaper for this article!