Topic: Article-My Sister's Losing Battle With Lyme Disease- on MSN
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
On the front page of MSN.com, on the right side, a heartbreaking story!! Everyone e-mail the author if you can, I plan to when I get back from my son's cardiology appointment later.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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treepatrol
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-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
This story made me cry. How do the "first do no harm" doctors feel now? Do they take her seriously, now that she's gone?
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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sixgoofykids
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Member # 11141
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Sad story.
It comes across as an anti-long-term abx story. I guess she wasn't on antibiotics long term? It doesn't mention what treatment she was doing other than what I would call palliative care (pain killers, anti-depressants, etc.).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Yeah I was a bit confused. It was obvious that her family really cared for her and tried their best.
However, I didn't see any mention of finding a LLMD or someone who sounded like they understood what she was going thourgh, or anything about her actually going on longer term antibiotics or herbals. It makes me wonder if she got proper help or not.
Posts: 526 | From NJ | Registered: May 2007
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dmc
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Member # 5102
posted
Such a sad story. I used earplugs when sounds became unbearable. There was no mention of that or other devices like sound proof headphones to help her cope.
I wonder if the reporter got the article correct. I know when I was interview recently regarding the CT HB6200 bill, the reporter made a few errors of what I said.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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you can leave comments also said mike!! bettyg *********************************************** I LEFT MANY COMMENTS; PLEASE ADD YOURS!
i copyied/broke up below for us all..bettyg, iowa activist
All she lost: My sister's battle with Lyme disease
After a decade of unbearable side effects, she decided to end her life Image: Sue dancing with John Sue Baiata, shown dancing with her brother, John, at his 2001 wedding, developed advanced Lyme disease in the years after being bitten by a tick.
One of the side effects she experienced was hyperacusis, a sensitivity to sound so severe that she tried to find a doctor willing to surgically deafen her. View related photos Courtesy of the Baiata family
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By John Baiata
NBC News producer
updated 7:14 a.m. CT, 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.
Q&A Close Up Of An Adult Female And Nymph Tick Is Shown June 15 2001 On A Fingertip Ticks
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.
Image: Sue and her family 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.''
Newsvine discussion: Talk about this story
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.''
CONTINUED : '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.
Q&A Close Up Of An Adult Female And Nymph Tick Is Shown June 15 2001 On A Fingertip Ticks
Lyme disease Learn about the most common tickborne illness in the United States, from symptoms to treatment and prevention.
msnbc.com 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.
Image: Sue by her jeep Courtesy of the Baiata family Sue Baiata in the late 1990s at a beach on Long Island, one of her favorite places. 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.''
Newsvine discussion: Talk about this story
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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posted
think ill print this for my f/u visit wiht pain dr. who today for post-op plan told me there is nothing else to give, the surj will just hurt
i just have to deal. not my idea of a "plan"!! so, deciedes on change of vicoden to antoher for few days only and cont with my stronger mainstay and hope it covers me.
next week (post-op) she want to "re-eval" my meds, pain. wants rhum, to reeval. explained that 8yrs of rhum caused this mess.
then asked if had been eval for fibromyalgia. so...plan on bringing as much info as i can
just stopping pain meds as strong as i am on right now is not feasable, but yet that is what she wants to do.......lyme is so mis understood and the pain even more so i think
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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bettyg
Unregistered
posted
reading some of the almost 300 REPLIES and found pat smith's .....
{"commentId":7149486,"authorDomain":"Patsmith"}
Pat Smith, President,Lyme Disease Association, Inc.
The story of the young woman with Lyme who committed suicide is tragic, but unfortunately, not without precedent.
All too often in my position I hear from patients in dire straights whose plights are brushed aside from conventional medical establishments/government entities, ironically, some of those referenced by the MSNBC piece.
It is time that the media focused on what is happening with Lyme disease in this country and worldwide.
It is time that so called experts and agencies whose job it is to protect public health be held accountable for their biased, narrow view of Lyme disease--a view which is costing people their jobs, homes, families, education, health, and their very lives− a view which is often colored by vested interests.
Who will step up to the plate and help these patients?
Our organization is an all volunteer non profit that has focused on this problem for many years, raising research dollars and educating.
We are swimming against the tide along with our fellow patient groups nationwide and doctors like those from the International Lyme and Associated Diseases Society who have consistently stuck out their necks to go to bat for this underserved and incredibly sick population, whose number is growing rapidly and spreading geographically.
Let us stop insulting public intelligence.
It is time to end the misleading hype:
that Lyme is hard to catch,
easy to cure,
needs a tick to be attached for 36 hours to get the disease,
is not in the south and Midwest,
tests are sensitive enough to pick up more than 50% of the cases,
that those infected are just crazy and antibiotic and attention seeking,
and that infection does not remain after treatment in some cases,
and that patients and groups who fight for them are the enemy.
It is time for real action.
We have a bill in Congress being held up by an organization which has been shown to have undisclosed conflicts of interest in developing Lyme treatment guidelines for patients--
guidelines which recommend against antibiotic treatment for chronic Lyme, against alternative treatment, against supplements, against clinical judgment.
At least one Congressman has accepted that as OK, keeping the bill from being heard in Congress.
Another Congressman, Christopher Smith (NJ), who introduced the bill, HR 1179, said last year on the floor of the House, regarding Lyme disease, there is a "cover-up.'' We echo that 1000 times over.
MSNBC, I hope you will put all the power and resources you possess behind exposing that cover-up soon,
as children ages 5-9 and 10-14 are at the greatest risk of acquiring Lyme disease,
and the prevailing attitude is allowing government agencies to remove children from mothers who are having them treated with ANTIBIOTICS for Lyme disease by LICENSED physicians.
Meanwhile, our heartfelt sympathy goes out to the Baiata family.
Many of us have experienced preventable suffering and tragedy due to this disease.
However, the tragedy is usually not due to Lyme disease itself but to politics, cover-up, vested interests, and bias, often a much bigger threat than the Borrelia burgdorferi organism causing Lyme disease, which we could overcome if the cover-up were exposed fully in the light of day.
posted
please, does anyone have the author's contact information?
my son has hyperacusis, among many other problems, is a teen, and has made attempts. yes he's in treatment, long term.
(antibiotics and several "neurologically based" medicines.)
this article is distinctly familiar and i fear a similar conclusion.
mo
[ 05-24-2009, 10:13 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Mo--
I am soooo sorry to read of your son's suffering. I had hyperacusis at one point and IV Rocephin resolved this issue for me. I never went to a Hyperacusis treatment center but got the IV through Dr. C in Missouri.
I've posted some links below which have hyperacusis treatment info:
Please pass along to your son that I know his suffering and pain is very real. He can and will however get better. He just needs the right treatment and some time.... I thought I would never pull out of that hell of suffering...I absolutely have......He absolutely can with the right doctor....
Take Care...
Posts: 1155 | From Southeast | Registered: Oct 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
NEVER EVER GIVE UP!
PEOPLE HAVE RECOVERED.
BE WILLING TO THINK (AND ACT) OUTSIDE OF THE BOX.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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bettyg
Unregistered
posted
mo,
i tried for 20-30 minutes to find you an address or form to fill out to send to John Baiata; NO LUCK!! -------------------------------------------------------------
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posted
thanks sweet betty! i tried for a while to. no deal.
i won't give up in my son's case, however, after seven years of aggressively trying to deal with this situation, safe and effective services do not seem to exist that support these kinds of extreme medical symptoms.
treatment of the infections, yes, but that is a long and winding road. people with these kinds of symptoms need a multitude of support services in order to make it through the treatment.
patients with these symptoms are completely shunned by societal systems and often end up in psychiatric wards, which makes the condition much, much worse.
imagine dealing with hyperacusis in supervised living quarters with people talking and yelling around you all day. and doctors who haven't a clue about your medical condition.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
mo, 1 last suggestion:
contact your LOCAL NBC NEWS TV STATION; ask them if they can direct you to john b....; tell them the reason why.
HEY!! i just remembered!!! in his story were friends of his sister, SUE, who replied and wanted to pass on their sympathies. JOHN REPLIED TO THAT POST PROMPTLY!!
so try the site leaving a message for john. it would take you too long to look for his nickname as it was different ... john and had a bunch of numbers after it!!
go to site and click on anyone's name who replied, if i remember right, YOU CAN PM THE AUTHOR OF THAT SPECIFIC POST FROM THERE!! try it!!
so what i'm getting at is this, copy your story above and state you want to get into touch with john directly.
he then can click on your name and send you a PM from that site!! again, try it; i spent 1 hr. reading most of replies one night and driving my eyes up a wall...
shall we say i'm PERSISTENT? LOL GOOD LUCK on my last strategy to you!
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