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




(Begin Article)

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!

Another great article to share!

Hi Friends,

Here is yet another great article about the struggles people who have Lyme disease have. It is amazing how much alike the stories of struggles are. This story is courtesy of our friends at MSNBC.

Be well,

Richard



All she lost: My sister's battle with Lyme disease
After a decade of unbearable side effects, she decided to end her life
By John Baiata
NBC News producer
updated 6:14 a.m. MT, Mon., May 18, 2009

The phone had not even finished its first ring before my wife, Anna, snatched it from its cradle. Concern was etched in her face as she handed me the receiver: “It’s the police. It’s about Sue.”

My stomach dropped. My older sister had disappeared the day before and my family feared for her safety. “I’m sorry to have to tell you this,” the police lieutenant said in an even voice, “but we found your sister dead this afternoon. We have reason to believe it was a suicide. We’re here with your mother now.”

I fought the urge to scream as my mind went in a million directions. “Do not leave my mother by herself,” I urged the lieutenant over the phone. “I’ll be there in a little more than an hour.”

I lurched outside and clung tightly to the deck railing, while everything else seemed to spin violently around me. Anna grabbed me with both hands. “What happened?!”

“She really did it this time,“ I said. “She killed herself.”

In the decade or so before Sue took her own life at age 46 on August 21, 2005, my sister Dawn, my mother and I had become all too familiar with advanced Lyme disease, which had slowly, inexorably diminished Sue’s life.

Sometime in the mid 1990s, my sister contracted Lyme disease, likely through being bitten by a deer tick or black-legged tick. The bacterium that had introduced itself to Sue’s bloodstream went undetected, and then was misdiagnosed for the better part of two years.

Identified early, a short course of oral antibiotics will cure the majority of cases of Lyme disease — more than 27,000 cases were reported in the U.S. in 2007 — and wipe out the typical symptoms of headaches, fatigue and a circular rash near the area of the bite. But left untreated, the disease can affect the heart and nervous system, causing joint pain. Sue faced a parade of symptoms including migraines, severe pain in her neck and major joints and staggering exhaustion.

Each one narrowed the prism through which she lived her life. Sue had to leave her job as a facilities manager to go on disability, and lived with my mother in the Long Island home where we were raised. On her good days, she would spend hours in the gardens she had lovingly cultivated in the expanse of the backyard. More than likely it was there too where the tick which bore the disease that would seal her fate attached itself to her.

On her bad days, she would stay in bed with the shades drawn, cuddled with the dog she loved unconditionally, her beloved Chihuahua, Katie. She would emerge only briefly to have some tea and a bite to eat, and a few words with our mom.

Still, she had accepted what her life had become. On those good days she could still fill the room with laughter. She would mine the late-night comedians for material but never really needed to. Making people laugh came naturally to her.

Her life became more attuned to the seasons than ever. She knew instinctively how to grow just about anything. She kept a pair of pruners in her car in case she happened across something that would make its way into one of her many centerpieces. One fall while driving through a rural part of northern New Jersey, she forced me to pull over to the side of the road, disappearing into a thicket of brush and trees. She emerged moments later holding a fistful of exotic-looking flowers over her head, grinning ear to ear like she’d just been handed an Oscar. One Christmas season, in a burst of energy, she decorated the entire house while my mom was at work. The memory of walking through the front door that day still lights up my mother’s face.

The agony of sound
Despite what Lyme disease had already taken, it was not done with her. A crueler, more insidious phase awaited. She began to develop an aversion to noises that had never bothered her before. Everyday sounds like the closing of a door or the cry of a child would cause her to cringe. A passing lawn mower or motorcycle would send her running for her room. The disease’s attack on her central nervous system had brought on hyperacusis, a severe sensitivity to sound. And it became progressively worse.

It was as if a volume dial, set on high, had broken off, and everything in her aural experience was overmodulated. Softer sounds were tolerable. Sharper sounds were not, and painfully so for her.

Hyperacusis, which can be brought on by trauma to the inner ear, is also thought to be a processing problem with the way the brain perceives sound, which seems much more likely in my sister’s case.

Dr. Paul Auwaerter, clinical director of infectious diseases at John Hopkins University School of Medicine and a leading specialist on Lyme disease, describes hyperacusis as “a bit like the old fashioned AM radios. When you turn the “gain” button up you get more stations, but you get a lot more static, too.”

One of the enduring frustrations for my sister, and for those of us who loved her, was the failure of her doctors to recognize what was wrong. She was misdiagnosed twice in the early stages of the disease — once with Chronic Fatigue Syndrome, the second time with Epstein-Barr virus. She was accused of exaggerating her symptoms to avoid work, or inventing them in order to get pain medication. By the time anyone thought to give her a definitive blood test for Lyme, the disease was on the march.

Patients treated in the early stages — within about two to four weeks after the onset of symptoms — usually make a complete recovery. Not everyone is so fortunate.

“It’s hard to put a number on how common misdiagnoses are, but early detection can be difficult," says Auwaerter. "It takes the body some time to generate enough antibodies to show up in testing, and the symptoms are common to many other ailments. There’s a general sense that if you have the infection longer, you’ll have extended symptoms.”

For those who are diagnosed late and have persistent symptoms, some doctors will prescribe an extended antibiotic regimen. That is a controversial approach, however, as several studies have shown it not to be an effective strategy.

There is also considerable debate in the medical community and with advocacy groups over some of the symptoms of “advanced” or “persistent” Lyme disease, like Sue had, and how to treat them. One theory, based on research studies, suggests that people who suffer from post-Lyme disease symptoms “may be genetically predisposed to develop an autoimmune response that contributes to their symptoms.”

'It's like they're screaming'
Sue was determined to deal with the progression of the disease — and especially the hyperacusis — on her own terms. She went on the Internet and did exhaustive research. She kept in contact with another sufferer of advanced Lyme who lived in New Jersey, comparing notes on their progressive symptoms. And she ping-ponged from specialist to specialist, desperate to find someone who could help, someone who believed her. She took to wearing ear-plugs, then sound-proof headphones. But it was akin to spitting in the ocean. It made no discernible difference.

“Sometimes,” she told me, “when people are talking to me, even if they’re whispering ... it’s like they’re screaming.”

My mother found her one day in her room, unresponsive and foam coming from her mouth. A long suicide note was tucked in a dresser drawer. She’d taken a bunch of pain pills from two prescription medications, but would live. When I arrived at the hospital my mother was outside stealing a cigarette, crying and ashen. When Sue came to, she was enraged that my mother had intervened. In the days after, an uncomfortable dynamic followed: Dawn and I were naturally supportive of my mother, and yet entirely empathetic to my sister’s situation. A common enemy soon emerged, however. Her doctors wanted her committed to the psychiatric ward.

We argued vehemently that she was not crazy. She was suffering from the advanced stages of a debilitating disease, and had left behind a reasoned, lucid note explaining her actions.

We eventually got her home and struck a wary truce: we would redouble our efforts to help her navigate the maze of health-care providers in search of some relief, and she would simply not give up. She was sent to a therapist, and placed on medication for depression — something she had struggled with even before contracting Lyme disease.

In search of a quieter neighborhood without the noises that were agony for Sue, my mom reluctantly put the house up for sale — the one that held so many memories for all of us, and Sue tore herself away from the gardens she loved. They moved, and then moved again, finally settling in a 55 and older community that they thought offered the quiet my sister so desperately sought. The first day the landscapers came by with their torturous weed-wackers, it became clear there would be no silent refuge.

Asking to be made deaf
Sue came to a drastic, but, given the circumstances, reasonable conclusion: she wanted to be surgically deafened. My sister — the same one who turned me on to all manner of wonderful music, who liked nothing better than lying on the beach listening to the sounds of the waves and seagulls, for whom peals of laughter were a siren’s song — would rather go deaf than endure any more pain. Now all she had to do was find a doctor who would do it.

No doctor would. They either did not believe the extent of her pain, felt it was too drastic a measure, or cited the “do no harm” tenet of the Hippocratic oath.

The last time I saw my sister alive was on one of her good days, in the summer of 2005. I had driven out to Long Island on a Saturday, and we spent the day together. We took a drive, and she asked me what music I was listening to. She could barely stand listening to music anymore, but she still wanted to know what was out there. I played a few tracks for her at the softest volume possible, and she laid her head back and smiled. Later, we went for a swim and she cracked a few jokes about sharing a pool with a bunch of people 20 and 30 years her senior. Looking back, the day seems impossible. A mirage.

Later that week, I called to see if it was OK to come out that weekend with my family. Sue was godmother to my oldest, Alexa, but had yet to meet my son Luke, who at the time was 3 months old. She wanted desperately to see him — and I to show him off — but she was fearful of the noise a crying baby would make. She urged me to come, and offered to leave the house in order to avoid the noise. I put the visit off again — a decision I regret to this day.

When my sister attempted suicide the second time, she was determined that there would be no intervention. Sue was up and dressed early that day in August, and told my mom she was going to the mall. She called later that day to say she had met a friend and would be home late, not to worry. Instead, she checked herself into a motel along a busy stretch of New York highway, affixed a bunch of morphine patches to her body, and lay down to die in an empty motel room. There was no note. I think, in Sue’s mind, her actions no longer required an explanation.

In the days following her death, my sister Dawn and I did our best to simultaneously deal with our grief and to support my mother, whose own grief had turned her near catatonic. The thought of never seeing Sue again, of never touching her or hearing the sound of her voice, was overwhelming. What was most painful for me was the knowledge that she would not be around to see my children grow. She’d never again get to spoil her goddaughter. And she had never met my son, Luke.

The day of her funeral, the visitation room was closed to all but immediate family just before her body was to be moved to the church. I walked in with Luke in my arms, and closed the door behind me. I placed his tiny hands in mine, and pressed them against my sister’s casket. “Sue, this is my beautiful boy, Luke,” I whispered.

“Luke, meet your wonderful Aunt Sue.”

I have a favorite picture I keep on my dresser of Sue with her arms wrapped around me on my wedding day. Her face is lit with undiluted joy. Joy for me. Joy for the moment. There are times still when my longing to have her back hurts as deeply as the day she left us. But mostly when I think of her now, I think of all the times, and all of the little ways she expressed that same unbridled passion for life.

My sister fought valiantly against a disease that had diminished the quality of that life to a level that was no longer acceptable to her. It never once diminished her spirit. Through it all, all she really wanted was relief to her pain, and for someone to believe her story.

John Baiata is a senior editor with NBC News.
© 2009 MSNBC Interactive. Reprints

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