Hän menetti kaiken: Sisareni taistelu borrelioosia vastaan.
Vuosien taistelu sietämättömiä oireita vastaan päättyi itsemurhaan.
Sue, 46, sairastui borrelioosiin 1990-luvun puolivälissä. Hän kuoli 21.8.2005.
Perheemme oppi tuntemaan myöhäisvaiheen borrelioosin vuosien aikana liiankin hyvin. Vähitellen tauti tuhosi sisareni elämän. Bakteeri pääsi etenemään Suen elimistössä rauhassa sillä se diagnosoitiin virheellisesti kahden vuoden ajan. Suella oli lukuisia oireita; migreeni, voimakas uupumus, kipuja niskassa ja suurissa nivelissä. Jokainen niistä kavensi hänen mahdollisuuksiaan normaalin elämään. Lopulta hän joutui jättämään työnsä ja jäämään sairauseläkkelle ja muuttamaan takaisin kotiin äitinsä luokse. Hyvinä päivinä hän pystyi tekemään puutarhatöitä ja huonoina hän vietti koko päivän vuoteessa suuresti rakastamansa chihuahuakoiransa kanssa.
Suen suurin ongelma oli voimakas yliherkkyys äänille. Normaalielämään kuuluvat äänet kuten ohiajava moottoripyörä, ruohonleikkuri, lapsen itku, oven sulkeutuminen jne. olivat hänelle sietämättömän voimakkaita ja saivat hänet pakenemaan huoneeseensa. Aikaa myöten oire vain paheni. Erityisesti terävät äänet olivat sietämättömiä. Hyperacusis, yliherkkyys äänille, voi aiheutua trauman seurauksena mutta sen on ajalteltu johtuvan myös aivojen muuttuneesta tavasta käsitellä ääniä.
Perheellemme ja Suelle oli erityisen vaikeaa se, että lääkärit eivät kyenneet löytämään syytä oireisiin. Hänet diagnosoitiin virheellisesti kahdesti; krooninen väsymysoireyhtymä ja Epstein-Barr -virus. Lääkärit väittivät hänen liioittelevan oireitaan jotta hänen ei tarvitsisi tehdä töitä tai keksivän erilaisia oireita jotta hän saisi kipulääkkeitä. Siinä vaiheessa kun kukaan ymmärsi tehdä borrelioositestejä, oli tauti jo edennyt tavoittamattomiin. Tri Auwaerterin mukaan on vaikea sanoa kuinka paljon virhediagnooseja tehdään, mutta taudin varhainen diagnosointi on vaikeaa. Borrelioositestien luotettavuus erityisesti varhaisvaiheessa on huono. Lisäksi potilaiden oireet ovat samanlaisia kuin useissa muissakin taudeissa. Yleissääntönä kuitenkin on, mitä kauemmin infektiota on sairastanut, sitä moninaisempia ovat myös oireet.
Sue joutui taistelemaan yksin lisääntyviä oireitaan ja erityisesti ääniyliherkkyyttään vastaan. Hän löysi kuitenkin internetin välityksellä henkilön joka kärsi samanlaisista oireista ja jonka kanssa hän pystyi vaihtamaan kokemuksiaan. Hän kävi useiden erikoislääkäreiden luona löytääkseen yhden joka voisi auttaa häntä ja joka uskoisi häntä. Hän käytti korvatulppia ja korvakuulokkeita mutta niistä oli vain vähäinen apu. Sue kertoi ihmisten tavallisen kuiskauksenkin kuulostavan huutamiselta. Lääkärit olisivat ohjanneet hänet hoitoon psykiatriseen sairaalaan. Sanoimme lääkäreille että Sue ei ole mielenvikainen, vaan kärsii vaikeasta kroonisesta sairaudesta ja veimme hänet takaisin kotiin.
Sue muutti äitinsä kanssa asunnosta toiseen löytääkseen hiljaisen asuinympäristön, mutta sellaista ei löytynyt. Lopulta Sue pyysi, että hänelle tehdään leikkaus jossa hän kuuroutuu. Yksikään lääkäri ei kuitenkaan suostunut tekemään toimenpidettä. He eivät uskoneet ongelman aiheuttavan niin paljon kipua hänelle. Sisareni taisteli urheasti elämänlaatuaan voimakkaasti heikentävää tautia vastaan siihen pisteeseen saakka jolloin hän ei enää kestänyt sitä. Loppujen lopuksi hän olisi vain halunnut löytää keinon jolla kivut vähenisivät ja löytää jonkun joka uskoisi häntä."
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 8:14 a.m. ET 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.
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