All she lost: My sister's battle with Lyme disease

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.

Q&A Lyme disease Learn about the most common tickborne illness in the United States, from symptoms to treatment and prevention. msnbc.com

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.

Courtesy of the Baiata family John Baiata could always count on his sister Sue to offer a listening ear when he needed to talk — and to introduce him to the latest music. Pictured in this family photo from the 1970s is Sue, far right, John, next to her, their sister Dawn, far left, and mother, Patricia.

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.”

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