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PrintAll she lost: My sister's battle with Lyme disease
Mon May 18, 2009 8:14 AM EDT
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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.
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{"commentId":7141110,"authorDomain":"john-crader"}
I was unfortunate enough to contact Lymes disease in 1980. No one knew what the hell I had until I was overseas four years later and diagnosed by a Norwegian doctor. Much too late to get me meaningful treatment. I can certainly empathze with the young lady. To this day I have some real health problems. When I first became sick, I would tell the doctors that I had been bitten by a tick. They tested for Rocky Mtn Spotted fever and a couple of other things. To no avail.
{"commentId":7141110,"threadId":"581206","contentId":"2831343","authorDomain":"john-crader"}
- 2 votes
#1 - Mon May 18, 2009 9:10 AM EDT{"commentId":7143408,"authorDomain":"meachom"}
{"commentId":7144006,"authorDomain":"gorpianna2001"}
I say God bless her! Your family too! I have a friend who had lyme disease also, and it took about a year for them to find it also, they did all sorts of tests, thought he had cancer and everything else under the sun! With all of technology out there, you think we would know what is wrong with a person, my friend is fine, but I feel deeply saddened by what your sister had to go through! Again, God bless all of you!
{"commentId":7144006,"threadId":"581206","contentId":"2831343","authorDomain":"gorpianna2001"}
{"commentId":7144460,"authorDomain":"mickisuzanne"}
My story is very much like the author’s sister except that I had crushing exhaustion, confusion and heart issues. After two years of illness my symptoms were starting to morph in strange ways - my face was crooked, my hands were going numb. People on the Chronic Fatigue Support board I had joined on Yahoo said "you have Lyme disease - you need to figure out how you got it."
I went online and found photos of deer ticks. I saw the one I had pulled out of my leg two months before I got sick. I was not hiking in the woods, I was not camping … I was sitting in a La-Z-Boy at my boyfriend’s house on five wooded acres watching Sex and the City. My dog was sleeping at my feet after chasing deer out back. Apparently she brought the tick in on her fur. When I “felt” something move under my skin, I clawed it out; it was round as a pea with my blood.
A friend said “You’re a cat - I knew you’d land on your feet.” I responded, “No - I’m a Phoenix. I rose from the ashes.” Like the author's sister, I had played with the notion of suicide. It gets very hopeless after a while, especially when you become a burden to those you love.
When I got my medical records after two years of fighting the insurers, you should have seen the specialists’ notes. They literally wrote me off as "depressed." Well, being debilitated for two years without diagnosis, after a two-year failed fight with the disability insurers and then starting to lose everything you worked a lifetime for, from sense of self and career to HOME - yeah, that will MAKE YOU DEPRESSED.
Oddly enough, while the insurance companies did not believe I had serious health issues when it came to granting the disability that would have helped me save my home and my possessions, they DID believe I had serious health issues when I finally found a job that offered health insurance. Our Business Manager shook her head when she told me my rates were the highest in the company - even higher than an individual who had survived cancer.
You people who are using this as a forum to sell "cures"? Get your heartless, predatory butts out of here.
{"commentId":7144460,"threadId":"581206","contentId":"2831343","authorDomain":"mickisuzanne"}
- 9 votes
{"commentId":7145005,"authorDomain":"jerzyboy349"}
I am sorry to hear of these awful cases of late diagnosed Lyme disease. This story is very important and can serve to save lives. I am very grateful to the ER doctor who diagnosed my case as early as he did. For those who spend alot of time outdoors in heavily wooded areas, become fanatical about personal hygiene. It's critical even if your friends and family think you're nuts. Most of all, should symptoms turn up, think of Lyme FIRST and NOT LAST and don't keep ithe idea from your doctor.
{"commentId":7145005,"threadId":"581206","contentId":"2831343","authorDomain":"jerzyboy349"}
- 1 vote
{"commentId":7146130,"authorDomain":"readmerrilee"}
Check, check check for ticks! I just found one on my cat the other day, My cousin's grandson had one, it's going to be a bad year for them in the northeast.
{"commentId":7146130,"threadId":"581206","contentId":"2831343","authorDomain":"readmerrilee"}
- 1 vote
{"commentId":7146143,"authorDomain":"gavroche"}
I was diagnosed in Santa Rosa, CA (2002) 10 days after tick bite produced huge rash (EM). The sound intolerance the article refers to is like stress intolerance. Whenever in noisy, overcrowded environments, and the stress level is high, just the *sound* of people's voices makes me want to run into a corner and cover my ears and head. Just like a person with severe mental illness. Intracranial pressure may have something to do with it. As might the drugs they're using to treat the Lyme disease. The adverse side effects are practically identical to Lyme disease symptoms.
{"commentId":7146143,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7146309,"authorDomain":"gavroche"}
I was prescribed doxycyline 10 days after the tick bite produced large red rash (EM). After 5 days on doxy, developed parasthesia in hands/forearms (felt like they were going paralyzed; numbness/tingling). Ongoing symptoms ever since. Vertigo, blurry vision, diplopia (double vision), seizures, convulsions, joint pain, fatigue, memory problems, rage, intracranial pressure, lesions on brain and spinal cord, stress intolerance, peripheral neuropathy, minor stroke, heart inflammation (chronic myocarditis), stiff neck, etc.; these symptoms probably involving meningo-encephalomyelitis.
Medical journals speculated last year that MS, which Lyme is often misdiagnosed as, is a disease of the blood brain barrier. That the severity of MS is directly correlated to compromising of the BBB. Doxycycline crosses the blood brain barrier. I wonder if sending neuro-toxins deep into the brain past the BBB is inducing symptoms that mimick chronic Lyme disease (aka "Post-Lyme disease syndrome"). Or antibiotic induced lupus. Tetracyclines have been known since the 1950's to induce lupus (see Minocycline especially).
I was a long distance hiker. Thru-hiked Appalachian Trail (Georgia to Maine; 2/4/01-6/18-01). Very good condition, hardly no health problems whatsoever. Increasingly debilitated almost seven years later. B. burgdorferi, or pharmaceutical mayhem?
{"commentId":7146309,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
- 3 votes
{"commentId":7146317,"authorDomain":"wap3"}
NPR
How right you are.
And also Colloidal/nano/ionic silver is also a good weapon for a "cure".
But to sum up today's medical/pharma industry.....
A patient cured, is a customer lost.
{"commentId":7146317,"threadId":"581206","contentId":"2831343","authorDomain":"wap3"}
- 5 votes
{"commentId":7146502,"authorDomain":"gavroche"}
BTW, I'm not entirely opposed to antibiotics. Simply questing that side of the controversy now after traveling the country since 2002 diagnosis and being denied everywhere the expensive IV ceftriaxone antibiotic which the NIH states brings a full recovery for Lyme disease. Low-income clinics and ER's in eight diffferent states all refused to treat, even though it is commonly shown in medical journals and elsewehere that tertiary Lyme disease, or chronic Lyme disease, if indeed that's what it is, is treated with IV ceftriaxone. I most certainly have had the neurological symptoms that would indicate it.
{"commentId":7146502,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7148640,"authorDomain":"fulkerforce2000"}
Only a western blot test can diagnose you........good luck with that. You need to meet the criteria of the CDC. Ask any doctor (neurologist) and they'll tell you the same.
{"commentId":7148640,"threadId":"581206","contentId":"2831343","authorDomain":"fulkerforce2000"}
- 2 votes
{"commentId":7148944,"authorDomain":"gavroche"}
Doxycycline is the first antibiotic given for treating Lyme disease. Why? And why is teeth discoloration given as the reason for not prescribing doxycyline to children under eight? The more important reason, and only found on the FDA site, is that DOXYCYCLINE CAUSES BRAIN SWELLING (ENCEPHALITIS) IN CHILDREN UNDER EIGHT YEARS OLD. If it does it to children, it's most likely doing it to adults. Hence chronic encephalopathy, intracranial pressure, lesions on brain/spinal cord, etc., etc., etc.
{"commentId":7148944,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7149210,"authorDomain":"gavroche"}
Amoxicillin (penicillin) is equally efficacious as doxycycline (tetracycline) for Lyme disease according to leading Lyme researcher Sam Donta. Problem is, they don't usually offer amoxicillin for Lyme disease. Doxy is standard protocol for Lyme, even though it crosses the blood brain barrier far more severely than amoxicillin (while Donta has stated he is unconvinced Lyme spirochette *ever* enters the brain). And again, medical journals speculated in 2008 that MS is a disease of the blood brain barrier. That the severity of MS is directly correlated to compromising of the BBB. Antibiotics crossing BBB = neuro-degenerative disease?
{"commentId":7149210,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7149712,"authorDomain":"entertainmentparalegal"}
I can not even comment I was so moved by this story. Tears are running down my face in my office. I need to switch pages.
{"commentId":7149712,"threadId":"581206","contentId":"2831343","authorDomain":"entertainmentparalegal"}
- 1 vote
{"commentId":7151595,"authorDomain":"bettygordon3-24"}
John, thank you for writing this soulful story of Sue's life with chronic lyme diseases and hyperacusis/sounds! It touched my heart and soul all the way thru it.
I too suffer from chronic lyme disease for 39 years last christmas! 34.5 years MISDIAGNOSED by 40-50 drs. UNACCEPTABLE!
I too have extreme sensitivities to:
noise/sounds like Sue; unbearable noise that is amplified all day/night long especially on our across the street neighbor who has STOCK CARS FOR RACING & LOUD MUFFLERS;
to lights, glare, and reflection ... like looking direction at the sun so i wear prescription sunglasses outside...the darkest they will tint them plus wraparound DARKEST sunglasses over my RX sunglasses. Many days, it's like I'm not wearing them at all....so bright.
Also, to chemicals: perfume, cologne, hair spray, after shave, cigarettes & ESPECIALLY ON PEOPLE'S CLOTHING; office supplies & cleaning supplies, DIESEL GAS FUMES, some foods especially oriental; etc.
Also, by touching me lightly or SNEAKING UP ON ME, I jump each time, and my heart is racing full power.
I have full-body PAIN; diagnosed with fibromyalgia too and have all 18 of 18 pressure points FULL of pain!!
So I use frozen ice packs like physical therapists use on the body after treatments all day long as I sit up!! It helps numb my pain.
In my case, it was a tick that came off my folk's LIVE christmas tree in 1969 that got me! NO BULLS-EYE RASH, etc.
I tracked it down using my journal I started at age 13. It was sub-zero Iowa weather; my roommates and I had NO PETS, and all the normal ways of being bitten by a tick were ruled out.
I have been fortunate NOT to be BEDRIDDEN for years; I was 1st 2 weeks of being bitten where my 1st dx was mono/epstein barr viruts, then the new diagnosis kept being added yearly if not more!
REST IN PEACE SUE! You are finally healthy, and sounds no longer will bother you.
You'll get to watch your brother's nephew grow up while in Heaven, and I'm sure you will be talking and guiding them as much as possible.
It's horrible enough to fight lyme disease and co-infections, but to FIGHT HEALTH INSURANCE COMPANIES WHO REFUSE TO PAY ANY OF OUR LYME/CO-INFECTION BILLS IS OUTRAGEOUS!!
Why aren't LYME patients treated like cancer, AIDS/HIV patients? All we want is EQUALITY and being treated WITH RESPECT instead of the mentality drs. give us, "IT'S ALL IN YOUR HEAD".
To Sue's family, thank you for sharing Sue's heartbreaking story with us all.
With lyme/co-infections, we lose our:
- jobs;
- health insurance;
- spouses due to divorces of not being able to take it anymore;
- custody of our children when we are our sickest;
- family/friends who don't believe us and therefore become NEGATIVES; we have to be around POSITIVE FOLKS ONLY!
- homes;
- bankruptcy;
- ULTIMATE .... SUICIDES when we can't stand the pain, suffering, and have lost everything!!
BettyG, Iowa lyme activist
- homes;
{"commentId":7151595,"threadId":"581206","contentId":"2831343","authorDomain":"bettygordon3-24"}
- 3 votes
{"commentId":7164742,"authorDomain":"gavroche"}
"Why aren't LYME patients treated like cancer, AIDS/HIV patients? All we want is EQUALITY and being treated WITH RESPECT..."
We? Are you an elected representative, speaking for Lyme patients at large? I'm a (diagnosed) Lyme patient but wouldn't want to insist on being treated the same as cancer, AIDS/HIV patients. They might be suffering far worse. Maybe they should be treated preferentially. I don't know. There is too much mystery surrounding this Lyme business to be demanding things such as that.
{"commentId":7164742,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7169178,"authorDomain":"KristyH"}
I am a 21 yr old college student and have had lyme disease for 8 yrs. I went undiagnosed until this past december when my mom finally insisted my doctor do a lyme test. For 8 yrs I have had horrible muscle and joint pain, nausea, stomach and intestine pain and just general inflamation everywhere. I was diagnosed with chrones, colitis, fibromialgia, chronic fatigue syndrome and most often was told it was all in my head. I missed out on high school because I was so tired and sick all of the time. I got horrible headaches and either had trouble sleeping or was sleeping all of the time. My western blot came back positive and it took me 3 months to find a doctor who would treat my late stage lyme disease with more than just 3 weeks of antibiotics. I am now on IV doxy and slowly recovering. My doctor believes it will be a while before I fully recover and will probably be on antibiotics for atleast a yr. this disease truely ruins peoples lives. We are told we are crazy and dismissed. No one even pain attention to me until I started having nerological symptoms. I am lucky enough to have insurance that pays for my treatment but guidelines need to be changed. This disease is under diagnosed and when diagnosed and treated. I am truly sorry that this woman had to die for people to pay attention to the horrors of this disease. My thoughts and prayers go out to her family.
P.S. in germany this disease is considered as bad as cancer and patients are given the same care as cancer patients. We do deserve the same care.
{"commentId":7169178,"threadId":"581206","contentId":"2831343","authorDomain":"KristyH"}
- 1 vote
{"commentId":7174449,"authorDomain":"gavroche"}
Kristy-1112237:
I knew of a man that had AIDS in Tucson, AZ. (1992). Chuck had surgery to remove fungus on his brain. Two of us went to see him after the surgery. We had to wear something like space suits (in order to protect him from infection). I'll never forget it. To think of myself demanding to be treated equally as someone in need of brain surgery...how could I? Granted, some with Lyme disease may be suffering in later stages to the point of death. Maybe I'll experience same at some point. But for me to demand treatment on an equal basis as someone with AIDS doesn't seem right. Open to feedback. Anyone?
{"commentId":7174449,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7184446,"authorDomain":"rkopek"}
I think what people are saying in wanting Chronic Lyme to be treated the same as we treat Cancer and AIDS is that they want the existance of the disease recognized and want people to stop treating it as a mental issue, something the patient is causing, malingering, hypochondria.
Also, does and AIDS or Cancer patient need to see over 20 doctors to get a diagnosis? Does insurance automatically refuse treatment because their disease doesn't exist?
{"commentId":7184446,"threadId":"581206","contentId":"2831343","authorDomain":"rkopek"}
- 2 votes
{"commentId":7189114,"authorDomain":"gavroche"}
From what little I know, people with AIDS have suffered terrible discrimination. Most likely in secret in such a way we're unaware. Some or many doctors wouldn't even see them. Dentists too. Etc. The point is, why is our dilemma stipulated in competitive terms with people suffering other diseases? Wouldn't it be better to say all people should recieve access to healthcare? I'm sick and tired of people imposing this competitive agenda on us to the point of death. For profit healthcare is by nature based in competition. That doesn't mean we all have to succomb to being turned into selfish Ayn Rand worshipping reptiles. Pharmaceuticals inducing neuro-psychiatric manifestations are already turning us into monsters enough as it is (if not spirochetal doing same).
{"commentId":7189114,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7343527,"authorDomain":"cynthia311"}
I have had lymes disease twice, got it once when I was 17 (45 now) and was not properly treated as they didn't know much about it then. I ended up in the hospital for 3 months and almost lost my life. I had many medical problems after that but noone believed me. Doctors thought I was mentally ill and or just a liar. I then got it again in 2006 and went to my doctor at the time (with a bull's eye mark) and he said its a spider bite and I said it was a tick bite, needless to say 2 months went by, back and forth to emergency rooms sick as a dog (migrianes, couldn't stand light, and many other horrible symptoms) until the last time in emergency I almost died because of my heart was giving out. Spent a week in one hospital (they couldn't figure it out quick enough) and then was sent to Boston hospital where some doctors tried to help me. So many medications, test, pokes and everything you can imagine. Became paralyzed again on the other side of my face (first time I was also, along with menegitis). They had done a few spinal taps and when results came back and confirmed finally it was lymes, they also saw that I had it before and it showed it to be dormant. I know I am rambling on, but it feels good to get it off my mind, because all the things I went through and the pain and whatnot..A lot of doctors and people do not believe or understand lymes and what it does to you. I feel so sorry for Sue, and I am angry about it also..because she didn't get the proper care that she deserved and my heart and prayers go out to her family. And also to the others that are out there going through it. It is a terrible disease, and most of the time you are left with awful, dibilitating problems that last your lifetime. I could go on forever about what I have and am going through still because of my last bout with it. But, my point is, don't let any doctor (and or others) tell you about how your feeling, or that its in your head. I had those types, but finally found the ones that believed me along with my family and friends. Doctors are not Gods, they do their best, but you know yourself..go to a specialitst..go to 100 doctors until you find the right one that will listen..thats what it took me. The last thing I want to say is, that they believe I got it a third time, but it was too close to the last time to confirm it. And mind you I am EXTREMELY careful about ticks..but the hide very well and go un-noticed..so everyone out there, please be careful and have someone else look if you have been out in the woods or have animals.. thank you and I appreciate being able to comment about this.
Cynthia
{"commentId":7343527,"threadId":"581206","contentId":"2831343","authorDomain":"cynthia311"}
{"commentId":7141292,"authorDomain":"ahchandler"}
Dear John Baiata:
I am so sorry for the loss of your sister. I was saddened to read about her long, unbearable bout with Lyme.
I also suffered with lyme disease and tested negative over and over. I was mis-diagnosed for over a year. One doctor suggested my ills were from being overweight (I gained 20 lbs from Lyme), one suggested I was depressed (I knew I wasn't depressed) and one said it was rheumatoid arthritis though I tested negative for R.A. (and he gave me drugs for it!).
The more I learned, the more astonished I became at the number of Long Island doctors who were unfamiliar with Lyme considering its prevalence here.
I knew I had Lyme (from all my internet research) but couldn't get a positive diagnosis. I later learned that a significant percentage of people test negative with the standard Elisha test used by most doctors. And when I finally saw a Lyme doctor, someone who knew what he was doing and who issued several, more involved tests, it was finally diagnosed. I was put on anti-biotics, supplements and a specific diet for eight months. This regimen, thankfully worked for me.
I am writing to say i understand what your sister went through because there were many days I thought i couldn't go on living, that i would prefer death over the severely diminished quality of life I was living. The answer to this problem is to educate our doctors. Lyme is one of the diseases they should think of first, when symptons mimicing Epstein Barr, Fibromyaligia and Rheumatoid arthritis appear in someone. I never had a ring, a rash or an obvious symptom a doctor could point to, but not many of us do.
A beloved swim coach in our area, like your sister, took his life recently, also suffering from a long bout with Lyme. If you can get the word out, Mr. Baiata, it should be to doctors to educate themselves to this disease. My husband took a walk to the beach recently and came home with 20 (yes!) ticks on him. This disease is prevalent out here and doctors still don't get it.
{"commentId":7141292,"threadId":"581206","contentId":"2831343","authorDomain":"ahchandler"}
- 12 votes
#2 - Mon May 18, 2009 9:26 AM EDT{"commentId":7142657,"authorDomain":"bobcouchman"}
there are at least 3 richettsial infections from ticks. lymes which is most publicized, also there is rocky mountain spotted fever and ehrlicchiosis. all three come from tick bites. ehrlicchiosis and rocky mountain spotted fever are more wide spread west of the missippi river. i worked in nursing for 30+ yrs. i had ehrlicchosis 2 times so any time i saw a patient with a tick bite and a fever i would press the doctors to check for these three diseases. the doctors were very reluctant to do so. i guess they didnt wwant someone less educated to suggest something to them. my family dr missdiagnosed me as having hepatitis, i was diagnosed by a infectious disease dr i worked with. he saved my bacon.
{"commentId":7142657,"threadId":"581206","contentId":"2831343","authorDomain":"bobcouchman"}
- 4 votes
{"commentId":7142686,"authorDomain":"hpjacobs"}
I am sorry for the loss of your beloved sister. Thank you for writing about it and alerting others about it. We are going into the summer when ticks become numerous and kids go out to play in the woods. Mothers and fathers should check their kids. Especialy if they live near wooded areas.
{"commentId":7142686,"threadId":"581206","contentId":"2831343","authorDomain":"hpjacobs"}
- 4 votes
{"commentId":7145268,"authorDomain":"threesisgarden"}
This is for Willa from Sag Harbor. Please, I too, have Lyme disease. Can you tell me exactly what you did, what the regimen was? I have been to many doctors who some say Yes, some say maybe, but with my health issues it keeps coming back to Lyme disease but none know how to treat it successfully. I have tried different protocols but when I retest with the Elisha it still isn't definitive. I would love to know the name of your doctor to contact and perhaps go to. I live in the Northwest (WA state) but no one here knows what to do. I hope and pray you respond with more details and information. Thank you!
{"commentId":7145268,"threadId":"581206","contentId":"2831343","authorDomain":"threesisgarden"}
{"commentId":7145368,"authorDomain":"kcmike-1"}
John and family, I so grieve the pain Sue went through and the pain you still know. Bless you. You have my love and prayers. I sincerely believe Sue is well now and very happy.
{"commentId":7145368,"threadId":"581206","contentId":"2831343","authorDomain":"kcmike-1"}
{"commentId":7145407,"authorDomain":"critterjulie"}
I have been dealing with possible? Lyme since 1/07, I fell and hit my head while walking across ice in a parking lot, from what I have read the bacteria from the tick can be fought off by your body then take over when you are injured. I have had several neg. tests but am still not sure. I also have extreme fatigue, and am not the same active, energetic mom I was before. My kids said recently that they don't remember what I was like before I got sick, my husband has said the same. I have been to many Dr.'s (Missouri), they all have been clueless as to how complicated Lyme is. I was given (at my request) Doxycycline for 2 mo., no change. I have ran a low grade fever the entire time, noise and light sensitivity, unrestful sleep, mind fog, major memory problems, weakness, achey muscles & dizzyness. I have stopped pursuing treatment for Lyme, I have spent thousands of dollars and haven't found a Dr. that is in my insurance network. I am going to a Neurologist to make sure there wasn't an injury to my brain when I fell.
{"commentId":7145407,"threadId":"581206","contentId":"2831343","authorDomain":"critterjulie"}
{"commentId":7146161,"authorDomain":"bruckiejr1"}
Hi Julie,
Also make sure that your house is safe from mold. Any prior floods or leaks into the house over a period of time may cause molds to grow between the walls. It may show similar symptoms to lyme. I say this because my mom has been bitten by three ticks with lyme and living in a moldy house. She has also spent thousands of dollars through the ringer. The worst of this is the mold because she was living in an atmosphere that encouraged the same symptoms as lyme. She had to leave the house while it was cleaned and feels safe now that it was done...... but still battling lyme.
May strength, love and God's will carry you through.
{"commentId":7146161,"threadId":"581206","contentId":"2831343","authorDomain":"bruckiejr1"}
{"commentId":7146807,"authorDomain":"Lesti"}
My husband has chronic Lyme Disease. My heart goes out to anyone who has ever had Lyme and to those who love them. It is not only a debilitating disease for those who have it, but a sense of helplessness for those who love them.
We live in Richmond VA and there are no Lyme literate doctors here either, we thankfully found a Dr. in northern VA. The 2 hour drive is bad, but it could be worse!
I agree there should be more Lyme literate doctors. Especially doctors that "specialize" in any degree that Lyme COULD affect. Eyes, ears, nerves, brain, skin.. it should be MANDITORY that they know what to look for to assist with detecting Lyme. Instead of chaulking it up to dry skin rash, RA, Chronic Fatique, Floaters, or any of the other "bs" they try to pass it off as.
{"commentId":7146807,"threadId":"581206","contentId":"2831343","authorDomain":"Lesti"}
- 1 vote
{"commentId":7147212,"authorDomain":"gavroche"}
LLMD's won't take indigent patients, so I was told. ILADS Dr. Martz was featured on ABC News in Colorado Springs a few years ago, said he was diagnosed w/ALS but figured it was Lymes, cured himself with 6 months IV ceftriaxone. I went to his clinic but was told they cannot afford to take indigent (poor) patients, that they don't even take insurance. Must be cash. ABC News wouldn't do a story on me though. A homeless man w/Lymes denied IV abx all over the country. That's when I began to question the pro-pharmaceutical angle as well. Camp A and Camp B. Both sides are suspect. One side says chronic Lyme is denied due to cost (IV ceftriaxone very expensive, etc.); the other side says there is no chronic Lyme disease, it's "Post-Lyme Disease Syndrome"--chronic symptomology due to early antibiotci treatment. A concealed way of saying antibiotic induced lupus?.
{"commentId":7147212,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
- 1 vote
{"commentId":7272880,"authorDomain":"bigpaws12"}
I consider myself lucky, with an asterisk. I'm fairly sure I was bitten over last summer before a trip I took to Va Beach, hauling my two kids to the beach with all the packing and unpacking and doing it all again and all on my own while my husband was overseas. I had thought I'd had a pimple or some irritation on the back of my head above the nape of my neck. No other adult in the house, no one to ask. I didn't feel well for a few days but was so busy I just blew it off. Few weeks later I had this crazy swelling on the top of my foot. Joint pain. No rash. Nothing hot. I thought maybe I'd cracked a foot bone or done some soft tissue damage that just wasn't resolving. Xrays, nothing wrong. started feeling tired. Not normal "lazy" tired... BUT, I couldn't sleep. For DAYS. And around the same time, I did have external. things going on... husband in Iraq, autistic child fighting to get services from Special Ed, one dog bitten by a viper... so it did at first seem reasonable for my doctor to think I was a stressed out insominiac.... but alas, three weeks in to being on anti-depressants and Ambien, I got worse. Much worse. Horrid arthritic pain in my shoulder. Bilateral swelling under my knees. Fatigue that would come on so suddenly it was scary. Not like being tired. Not feeling lazy, feeling like if I didn't lie down right NOW I might never get back up. Oh, and the COLD. Freezing cold hands, toes and nose. Like Lupus I thought, or MS on the sudden feeling that I had no use of my muscles or strength. I think my PA was terrified that the antidepressants and sleeping pills gave me drug-induced lupus. He ran autoimmune test he could think of, plus Lyme nad some others. Then due to a snafu and some poor management in my Doc's office, five weeks went by before i got the results. I was treated on Doxy for weeks and given new antidepressants which didn't seem like they did anything except make me not care that I had Lyme Disease. However, slowly it did improve. The weeks on the Doxy didn't seem to have much effect and perhaps had none at all. I mean, the recommended dosage is the same dosage they give to teens with Acne. I'm surprised nothing stronger is given, like Cipro. In any case, slowly the arthritis in my shoulders seems to be going away. My neck still pops and cracks. My knees still swell and ache. I still get chilly but not all the time. I still get tired but since I'm basically operating like a single parent for a while, I have no choice but to get up and get the kids to school and walk the dogs and clean the house and mow the yard. I think not giving in to how I feel has helped. I am still going to visit a rheumy soon for help with the joint issues. Antidepressants (which I do not take now, don't need to) should be an automatic for patients with Lyme and some antidepressants can actually cause deeper feelings of depression, so careful monitoring of medications is important. Seeing a neurologist and a rheumy should also be a must and communication amongst all directly is also a must. My doctors only pay attention to what I can remember to tell them... oh, and that's something else. My once incredibly sharp mind? Never losing anything even in a mess? Gone. I am forgetful where I never was before. Clumsy where i never was before (always had perfect balance. I grew up doing Yoga. Paid off til that damned tick bit me). I think in areas where ticks are common testing for Lyme if ANY of the symptoms are present should be a requirement. There are too many doctors who think of it only after all the other things are ruled out. Why don't we have something like the BioSpot I put on my dogs to repel fleas and ticks and mosquitoes for people? My heart goes out to this family. I totally understand how drowning in this sea of life destroying symptoms this woman would use suicide to escape her pain. It's not the disease that causes depression, it's the horrid array of symptoms that seem so disconnected. Had my doctor not checked further I would have been written off as a peri-menopausal nutcase with bad knees.
{"commentId":7272880,"threadId":"581206","contentId":"2831343","authorDomain":"bigpaws12"}
- 2 votes
{"commentId":7141509,"authorDomain":"darryljhenderson"}
Dear John Baiata:
I am truly touched and deeply saddened after reading about your sister's fight against this incidious illness. The death of a loved one and a dear friend are truly heart wrenching. My prayers are with you and your family at this tough time. God bless.
{"commentId":7141509,"threadId":"581206","contentId":"2831343","authorDomain":"darryljhenderson"}
#3 - Mon May 18, 2009 9:44 AM EDT{"commentId":7141517,"authorDomain":"vikton"}
Such a sad story. What makes it even worse is that she suffered so much and the doctors never believed her. Perhaps if she was surgically made deaf, she might have had some happy years with less pain. Instead, she was doubted and not helped by anyone in the medical community. Probably was the last straw for her.
Funny, doctors cite this "do no harm" motto, but they have no problem sending people off to take unnecessary tests so the hospital they work for will rake up the dough (which I have had happen several times). Funny they don't have a problem harming people financially.
Anyway, maybe doctors need to shut up more and listen to their patients instead of trying to out guess them.
Too bad, they didn't listen to her, she sounds like she was a lovely woman.
{"commentId":7141517,"threadId":"581206","contentId":"2831343","authorDomain":"vikton"}
- 12 votes
#4 - Mon May 18, 2009 9:45 AM EDT{"commentId":7142542,"authorDomain":"infarct"}
Clearly you speak with the bias of someone not a physician. What you did not hear from the story is why a physician would not surgically deafen a person. There is no standard treatment for hyperacusis from advanced Lyme. Would you take all the risks associated with transecting the vestibulocochlear nerve (ie, postpoperative infection or bleeding, or worse death) if you weren't certain that doing so would even provide the desired result? What if doing so made it worse?
My heart too breaks for the loss of a vibrant human being. It is tragic that someone would resort to suicide because of the pain of a medical condition and no physician would want that guilt, Hippocratic oath or not.
{"commentId":7142542,"threadId":"581206","contentId":"2831343","authorDomain":"infarct"}
- 3 votes
{"commentId":7143269,"authorDomain":"meemeefranco"}
And you, Dr./Mr. Wang, speak from the position of a pompous, know-it-all physician who talks at a patient instead of to one and is more interested in protecting yourself instead of the patient. This woman suffered for years yet many members of your illustrious community discounted her. She was willing to face the risks associated with a procedure where there is no precident so that she could improve the quality of her life. Drastic, yes. But so was open heart surgery before it became an widely-used, lifesaving procedure. Get off of your high-horse and try to see the scenario from the perspective of those you are charged to treat. Sometimes to "do no harm" is action as opposed to inaction.
{"commentId":7143269,"threadId":"581206","contentId":"2831343","authorDomain":"meemeefranco"}
- 11 votes
{"commentId":7144947,"authorDomain":"chicky"}
So sad that lack of the dissimination of medical findings were the cause of her death. If
she had been treated appropriately she may not have ever advanced with the neuro
degree she had. While the medical literature has all pointed to the ears as one of the 5
most common sites for clustering of Borrelia it is stupidly ignored as well as the other
sites which do require treatment and are not receiveing it. Hopefully doctors will start
looking at the research literature for themselves not just trusting what the CDC and
IDSA are telling them. Because it is too late for her but maybe the many others can be
helped. Thanks to the family for sharing this to help others and to MSNBC for posting
this article. I too have Bb and I would have liked to have know her.
{"commentId":7144947,"threadId":"581206","contentId":"2831343","authorDomain":"chicky"}
{"commentId":7145002,"authorDomain":"1mich"}
Her biggest problem was being a woman. Bet you if she'd been male, they would have listened without the same level of skepticism or doubt. I'd been through this myself when I was 28--hardly a baby, but written off for being an hysterical female--even though it turns out I had a very real autoimmune disease. And each and every time I've been written off I've been vindicated whether with regard to my health or anything else.
In most of these cases, though, vindication is not what we seek. We seek help which we sadly don't get.
{"commentId":7145002,"threadId":"581206","contentId":"2831343","authorDomain":"1mich"}
{"commentId":7145575,"authorDomain":"ehlondon"}
No Michelle, it's not because she was a woman, it happens to everyone. It's unfortunate that it does happen, but I think a lot of times it happens because doctors become weary of patients who think they are doctors themselves and it's hard to pick out someone who genuinely knows what's wrong with them from a hypocrodriac. It also doesn't help that our healthcare system seems to encourage "dismissive" treatment i.e, someone comes in with a real concern, you dismiss it as whatever disease your favorite pharmaceutical rep's company sells and you issue prescriptions.
This story touched me personally because my wife for years now has been routinely sick. 60% of the time she's mostly fine, but some days (like today), she has random body pain, headaches, nausea and other weird symptoms but no doctor has ever found anything wrong with her. They all usually end up dismissing her ailments as pyschosomatic. Lyme disease is one of the things she's thrown around before because of the similarities to some of the symptoms, but after reading about some terrible cases, she said she couldn't have it because she is not that bad. She has all but given up on hope for a cure to whatever it is she has, but maybe this article may inspire her to go out and find someone who can help.
{"commentId":7145575,"threadId":"581206","contentId":"2831343","authorDomain":"ehlondon"}
{"commentId":7146550,"authorDomain":"lindablevins11"}
Physicians are so afraid of people becoming addicted to drugs. They don't care how much pain their patients are in. There comes a time when one can only endure so much. I can truly emphacize with your sister.
{"commentId":7146550,"threadId":"581206","contentId":"2831343","authorDomain":"lindablevins11"}
{"commentId":7166310,"authorDomain":"infarct"}
Meemus -- My comments were only to highlight the fact that the other side of the story is not being told here. Or in your world, is there only one side?
You accuse me of being on a high horse, yet can you not be accused of a similar attitude? It is convenient for someone like you who has no stake in the matter to "armchair" quarterback what has already happened. Was there a delay in diagnosis? Obviously yes; but without any signs (a typical rash for one -- we are not given that information), Lyme disease likely was probably not in the forefront of her primary care provider's mind. Are you going to blame the physician, nurse practitioner, or physician assistant who saw this lady for thinking ANYTHING other than Lyme disease at her initial presentation. What qualifies you to answer affirmatively?
The typical presentation for Lyme disease is nonspecific. Are you saying we should screen for Lyme disease for every patient that comes in with nonspecific complaints? Can the American medical system afford such screening? If we screen for Lyme on every visit, are we now to screen for every other disease that could possibly produce such symptoms?
I understand your upset. I am equally upset that a life was lost. But to blame the medical community for her loss is as fair as blaming her for not wearing insect repellant while working in the yard. What if she did and she still got bit? Are you going to blame the makers of OFF! or other bug repellants?
If there was noone qualified to do such a radical procedure, or someone who was qualified but didn't think it would help -- do you think the law should FORCE a physician to do such a procedure? Should physicians be allowed to make any decisions in your world?
{"commentId":7166310,"threadId":"581206","contentId":"2831343","authorDomain":"infarct"}
{"commentId":7168059,"authorDomain":"meemeefranco"}
I am a nurse!! And I see on a daily basis MD's like you come into a room, not let a patient get a word in edgewise, leave and the patient is confused and feeling like they have not been heard.
There are plenty of other diseases that are ruled out by exclusion, Lyme included. But this woman was in pain and desperate. Would I advocate forcing a MD to perform such a procedure? Absolutely not. But medical journals are repleat with studies that reveal that MD's, if they are not specialists, over time will not look for anything beyond what they routinely see. Sometimes, particularly in the NE where Lyme disease is more prevalent, it helps to think outside of the box.
If a patient is presenting to you with the same symptoms or worsening ones over the course of six months would you have already referred them to a specialist or would you continue to treat them make them think that whatever it is they are going through is all in their heads? Healthcare professionals have the advantage of being able to describe, in technical and specific terms, what is ailing them. Lay persons do not and often, as diligently as they try, cannot convey precisely what it is they are experiencing.
To most people, the thought of purposely causing ourselves to lose our hearing is absurd. But if a person can have a cochlear implant put into place to restore hearing why can't a patient have a proceudre to eliminate it if it will improve the quality of their lives?
{"commentId":7168059,"threadId":"581206","contentId":"2831343","authorDomain":"meemeefranco"}
- 2 votes
{"commentId":7172029,"authorDomain":"infarct"}
Meemus - I'm not sure what we're arguing about anymore. If anything, I think we are agreeing. This is a tragic story about a woman who's diagnosis of Lyme disease was delayed. The delay may or may not have been related to how she was worked up (we don't get the whole story). The delay in diagnosis resulted in her developing advanced Lyme which unfortunately resulted in her suffering the most severe case of hyperacusis I have ever heard (and developing from the sounds of it, major depression) so much so that she committed suicide.
From your replies, aside from assailing me with insults including "pompous", "know it all," and implying that I am an uncaring and unsympathetic physician unwilling to listen to patients (WHEN YOU DO NOT KNOW ME OR MY BEDSIDE MANNER!) we actually seem to agree that Lyme is a difficult diagnosis and one of exclusion.
I would agree that any patient who feels ignored by their physician should find another physician. Would I have let her symptoms go for so long? I would hope not, but I don't know how she presented and it would be unfair of me to assume any different of any other HARD WORKING clinician who saw her.
I have no opposition to performing radical procedures as long as there are consenting patients and physicians and those procedures are approved by the FDA or an authorized governing body. No argument here. My only argument is that we should not impune physicians who choose not to do something with which they do not agree.
{"commentId":7172029,"threadId":"581206","contentId":"2831343","authorDomain":"infarct"}
{"commentId":7189678,"authorDomain":"hellocatfish"}
LOL--Meemus speaks English. You speak that weird dialect most doctors (fortunately not mine) seem to speak. No wonder you lost track of what you were arguing about.
My current doc is so cool. I go in, tell her what's going on in plain English, tell what I think might be wrong. She thinks it over, tells me what she thinks in plain English, tells me what tests are available, and we sit down and decide if it's worthwhile to get the tests or make minor changes and wait and see. Together we've caught a lot of problems in early stages or caught onto things my other past docs missed because, well I guess I didn't "present" the right way to tear their eyes away from the bottom line. I'm decently educated btw, but I'm laying on the slang kind of thick just because I'm in the mood to.
Dr. Wang, I'm not saying you're a bad doc. I'm just saying you don't seem to realize that in your dialogue with Meemus, you're coming across as a bit "entrenched" into a very rigid approach. Your side of it, while making sense, sounds kind of uber med-schoolish. Your back and forth with Meemus is totally classic Dr. vs. Nurse banter that I saw back in a previous practice where the hositilities were blatantly obvious to us patients. Not suprisingly, that practice splintered badly. The practice I go to now, the doctors and the nurses and even the office staff all have such a good rapport. The communication is almost as important as the tests and medications they dispense.
{"commentId":7189678,"threadId":"581206","contentId":"2831343","authorDomain":"hellocatfish"}
{"commentId":7274376,"authorDomain":"bigpaws12"}
Anthony- I couldn't agree more. I like the idea they've got in the UK- doctors are paid more for keeping their patients healthy. Have an obese, pre-diabetic patient that you encourage to lose weight and get healthy= getting a bonus instead of making them wade through oodles of tests and just waiting until they ARE diabetic so you can push meds and equipment on them... hmmmm. Logic. It's what I call a Five-Letter Word.
{"commentId":7274376,"threadId":"581206","contentId":"2831343","authorDomain":"bigpaws12"}
{"commentId":7141543,"authorDomain":"tjmccullough63"}
Mr Baiata
I lost my brother0in0law to suicide 18 years ago. He didn't battle physical demons, but some just as powerful. He left my sister and 3 children under 5. There is no understanding, hopefully just a peaceful acceptance of the loss. You article seems to communicate this, and I hope it will be helpful to others who haven't reached that point, but are walking the same path. I fond myself missing your sister also, and I never met her.
{"commentId":7141543,"threadId":"581206","contentId":"2831343","authorDomain":"tjmccullough63"}
- 1 vote
#5 - Mon May 18, 2009 9:47 AM EDT{"commentId":7141566,"authorDomain":"fieldtheory"}
The saddest part of this story is that it is repeated every day throughout the United States. Women suffer needlessly, and often die, because the knee-jerk reaction of doctors everywhere is that unless a woman has a broken leg, it's all in her mind. Doctors are just now reluctantly beginning to accept that women presenting with cardiac symptoms may actually have a heart condition instead of anxiety, despite the fact that heart attacks have been the leading cause of death of women for years. Female doctors, who have been brainwashed at the same medical schools, are as dismissive of women as are male doctors.
Suicide didn't kill this woman. Lyme disease didn't kill this woman. A deeply misogynistic medical system killed this woman. Ladies, if something serious is wrong with you, go to a naturopath or homeopath. Stay away from the AMA. That is the lesson to take away from this sad story.
{"commentId":7141566,"threadId":"581206","contentId":"2831343","authorDomain":"fieldtheory"}
- 13 votes
#6 - Mon May 18, 2009 9:49 AM EDT{"commentId":7146768,"authorDomain":"gavroche"}
fieldtheory: Misogynistic medical system? Greed is not confined to gender. Plutocrats consist of both men and women. Granted, socio-economic gender inequality continues unabated within this capitalist system, but healthcare is only a part, not the whole.
{"commentId":7146768,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7147035,"authorDomain":"gavroche"}
Noam Chomsky:
...Concealed from public view is the fact that "politics is the shadow cast on society by big business," as John Dewey stated the truism familiar at least since Adam Smith, adding that as long as this is so, "the attenuation of the shadow will not change the substance." Reforms are of limited utility. Democracy requires that the source of the shadow be removed, not only because of its domination of the political arena, but because the very institutions of private power undermine democracy and freedom; again, an observation familar back to the Founding Fathers.
Rollback Part 1; Z Magazine 1995
{"commentId":7147035,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7148147,"authorDomain":"fieldtheory"}
Chris, yes, misogynistic. The difference between the way men and women are treated in ER's has been documented. Also, you will notice I said female doctors are as dismissive as males of women's symptoms.
Nor did I say inequality is limited to medical care.
So I guess I don't quite follow your rebuttals of my post.
{"commentId":7148147,"threadId":"581206","contentId":"2831343","authorDomain":"fieldtheory"}
{"commentId":7150083,"authorDomain":"gavroche"}
It's not so much a rebuttal of your post since much is agreed upon. But I don't follow the logic of the suicide being due to a misogynistic healthcare system. One of the leading founders of Bruce Springsteen's E Street Band (a man) committed suicide a couple years ago, reportedly due to Lyme disease. How would that be due to a misogynist healthcare system? Because the symptomology is overlooked or explained away as psychosomatic? That could simply be due to greed--denial of treatment due to cost--or pharmaceutical mayhem (see my posts above...mayhem meant here as deliberately causing physical harm/debilitation/degeneration), i.e., Nazi eugenics. Not the scientific definition of eugenics, but socio-economic definition wherein the poor are considered an unnecessary burden on society. Irrespective of gender. How many senior citizens is the U.S. projected to have? An unnecessary burden? Instead of a biological stealth pathogen in the form of a bacterial spirochette, perhaps pharmaceuticals are being used as a means of population control. That may sound too hyperbolic, but there are countless reasons to wonder. MSG continues to be in our food (ranch dressing, etc.) when they know it causes cancer. Automobiles are weapons of mass destruction, most especially when drunk driving laws are not strict enough to curtail drunken driving. Etc. So I don't see misogyny as the sole reason behind this woman's suicide.
{"commentId":7150083,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7150537,"authorDomain":"gavroche"}
On a personal note to support the point above about pharma drugs/population control...Not just Lyme diagnosis in 2002, but now might possibly have an STD contracted from massage table. Haven't had sexual relations for many years, so months ago sought physical gratification through a professional massage. Have since learned you can contract gonorrhea that way. Semen emission in contact with sheets/venereal bacteria. And/or chlamydia. But sitting here with epididymitis, and it's getting worse. Guess what that causes? Infertility. And the CDC is no longer recommending fluoroquinolone antibiotics for gonorrhea since it has become resistant. Cephalosporins are now indicated; ceftriaxone. Has anyone prescribed that for me? No. Not one low-income clinic, not two walk-in clinics, not two county health department clinics, and neither of two urologists. The latter urologist did prescribe Cipro (fluoroquinolone) however. Even though the CDC warns not to since gonorrhea has become resistant to it. And that Cipro was prescribed due to there being "bacteria in the urine". They didn't bother to find out what bacteria exactly. So by chance, or design, this (probable) denial of medical treatment? Because if the infection persists to where I can't procreate, that's one less poor person breeding. Not to mention the risk of Cipro adverse effects causing physical debilitation, etc. (tendons can rupture...btw, Cipro is used for anthrax).
{"commentId":7150537,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7152271,"authorDomain":"chauliodus"}
Perhaps you should go to medical school so you can know what you are talking about...since the things you say don't make sense from an immunological stanpoint
What is your point in saying that Cipro is used to treat anthrax? Your precious ceftriaxone is also used to treat Neisseria Meningitis which is much more serious and deadly than epididymitits. The bacteria a drug treats does not indicate how strong it is...it depends on the antibiotics mechanism of action.
{"commentId":7152271,"threadId":"581206","contentId":"2831343","authorDomain":"chauliodus"}
{"commentId":7152846,"authorDomain":"gavroche"}
Specifically what things don't make sense? "Your precious ceftriaxone"....can you write sensibly without resorting to haughtiness? It's completey unnecessary. If you would like to set me straight on anything I may have wrong, then do so. But the point about Cipro is not how strong it is....it's that the adverse effects are serious enough that it received a "black box" warning for causing ruptured tendons. Would that mechanism be anything along the lines of Lyme/doxy arthritis in the knee? It sure sounds like it. Yet, "we don't know why it ruptures tendons". Experimental.
Plus that it was prescribed without the bacteria even having been identified. If it is gonorrhea, then fluoroquinolone is no longer indicated (according to the CDC). That means I could be taking it, and the adverse risks associated with it, unnecessarily. And that with a history of seizures, etc. (either from chronic Lyme or the doxy/amox/cefuroxime in 2002).
BTW, just remembered...that was Bill Chinnock who committed suicide. Considered to have been a founding member of the E Street Band.
{"commentId":7152846,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7155348,"authorDomain":"gavroche"}
A little more on this (a little graphic; involves a public health issue)....Granted, I'm hypothesizing about the gonorrhea. The low-income clinic 6-8 months ago diagnosed the rash from massage table as "fungus on the scrotum". They prescribed Ketoconazole cream. 2 tubes, itchy rash (and cloudy urine) still there. Miconazole (?) cream prescribed. Didn't help. Been using medicated powder almost daily for past 6-8 months to keep the itch away. Meanwhile 2-3 weeks ago, developed pain in the left testicle. Near the testicle. Epididymitis like, though not severe pain as of yet. Getting there. The whole time I'm thinking it is the fungus. Epididymitis caused by the fungus. Urologist said no, "bacteria in urine", that fungal epididymitis is with immunocompromised people. Still, I talked him into Fluconazole in case it was fungus as diagnosed previously. Took that for six days, very toxic, quit it since it wasn't helping. Now have begun the Cipro, hoping it is indeed bacterial, and that it is gonorrhea and not chlamydia (since that would require a different antibiotic), and that I'm fortunate enough to have the sort of gonorrhea that hasn't become resistant to fluoroquinolone antibiotic [Cipro].
All that time I hadn't thought a person could catch an STD from a massage table. But a good argument in favor of that is that all it takes is to have semen emission come in contact with the bacteria on the sheets. And since the woman massaged my buttocks, pushing my groin into the mattress/sheets, and with my not having had sexual relations in many years, I do recall there was some semen emission. So, again, hypothetically (since that's all I have to go on right?), could have contracted gonorrhea which causes epididymitis (involving pain in testicles). Correct me if I'm wrong. But please, no more drive by smear campaigns. Be specific.
{"commentId":7155348,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7155709,"authorDomain":"gavroche"}
So in summary fieldtheory, I wouldn't be able to blame the increasing pain in my testicles on a misogynistic healthcare system. Not directly, anyhow.
{"commentId":7155709,"threadId":"581206","contentId":"2831343","authorDomain":"gavroche"}
{"commentId":7141611,"authorDomain":"thepeartreegifts"}
This story breaks my heart. So sorry for your loss Mr. Baiata.
{"commentId":7141611,"threadId":"581206","contentId":"2831343","authorDomain":"thepeartreegifts"}
#7 - Mon May 18, 2009 9:51 AM EDT{"commentId":7141620,"authorDomain":"sparks-inc"}
I was recently down soth to help a friend in the rebuild of his home after a storm swept through and demolished part of his home. When I got home I found a tick clinging to my scalp. I immediatelt had my wife tweezer it off and put some alcohol on it to help try and kill any possible germs from it. 3 days later and the tick bit has swollen up to the size of a dime no matter what I put on it. Guess this is my sign to get to the doctor and have them take a gander at it.
My deepest sympathies to the loose of your sister. It's amazing how the body retreats and fights against itself as cases like these progress. My deepest sorrows to your family and this rough time.
{"commentId":7141620,"threadId":"581206","contentId":"2831343","authorDomain":"sparks-inc"}
- 1 vote
#8 - Mon May 18, 2009 9:52 AM EDT{"commentId":7141896,"authorDomain":"sparks-inc"}
I know i'm a big finatic when it comes to symptoms and my first line of defense is grabbing a well documented site on ailments. I did a search on tick bites and read carefully on the symptoms and side effects.
Back 1 month ago. My daughter was claiming severe abdominal pain on her right side. I looked up appendix symptoms and did all the physical tests to get the results the medical article gave for doing a self test for some idea of what was going on. Turned out her it was her appendix and while we were in the waiting room it had ruptured and she had emergency surgery couple hours later.
{"commentId":7141896,"threadId":"581206","contentId":"2831343","authorDomain":"sparks-inc"}
{"commentId":7142238,"authorDomain":"njtomiami"}
When you pull tick out you actually pull the body out but the head (and the disease) stay in your skin. You should run to the doctor asap.
My doctor in Suffern, NY has has seen so many tick bites he has invented a way to remove entire body of tick before they release their disease into your body. He fills needle with water and injects needle into skin opposite the tick head then the tick becomes annoyed and the tick crawls out of your skin. Then you grab tick and kill it.
{"commentId":7142238,"threadId":"581206","contentId":"2831343","authorDomain":"njtomiami"}
- 2 votes
{"commentId":7144263,"authorDomain":"bckm"}
NJ, that is a very interesting treatment. I hope there are lots of doctors reading your post...
{"commentId":7144263,"threadId":"581206","contentId":"2831343","authorDomain":"bckm"}
{"commentId":7141642,"authorDomain":"hootnei"}
WOW!!! This is heart wrenching! But this article also opens up the need to be careful in the woods or pretty much anywhere. This does need to be further studied by the medical field, as hardly anyone even knows the symptoms of this disease. Once again John, I am sorry for your loss and hope your family is doing ok these days, and I also thank you for posting this article....hopefully it'll wake some people up to how harmful this is.
{"commentId":7141642,"threadId":"581206","contentId":"2831343","authorDomain":"hootnei"}
- 2 votes
#9 - Mon May 18, 2009 9:54 AM EDT{"commentId":7142364,"authorDomain":"ewent"}
Just another...I live in NJ. On December 9, 1990, a windy but cold day, I was bitten in my backyard while raking the last of the autumn leaves. I didn't find the tick bite until the next day when I noticed the huge bullseye. Since I'd been raised on a small NJ farm and been bitten by common dog ticks many times as a child, I didn't think this was anything to worry about. Almost 2 weeks to the day, I awoke with my heart pounding, feeling horrible nausea and a headache that made it feel as if the floor was coming up in my face with every step I took. I assumed it was a heart attack at 44 years old. I went to the emergency room only to be told that it was flu. When I asked about the bullseye from the tick bite, I was told it was nothing to worry about because NJ had no Lyme ticks. It took tests sent out west to a lab where they tested for tropical diseases for my diagnosis of Lyme Disease to be finally, after nearly 6 months, confirmed.
The heart problems never got better. I had tremors in my left arm and Bell's Palsy on the right side of my face, problems with my vision and hearing and the dizziness is still with me to this day. One 7 year old died of Lyme in 1989 in a neighboring town and another young boy of 15 was nearly emaciated by the disease. My sympathies to the family of this young woman. It's heart wrenching to learn that Lyme is still as deadly as it was in 1990.
{"commentId":7142364,"threadId":"581206","contentId":"2831343","authorDomain":"ewent"}
- 1 vote
{"commentId":7143694,"authorDomain":"meachom"}
{"commentId":7141651,"authorDomain":"rjellisjr"}
First let me say I am sorry for your loss. I can empathise with your sister as I had and continue to have symptoms from Lyme's. I am lucky that a few courses of antibiotics stopped the progression but left me with sever symptoms. The course of antibiotics was over a 2 1/2 year period. The first Dr who saw me after I started to feel bad stated "it looks like you have lyme's" due to 2 bullseye marks on my body. He did a blood test which then took 14 days for results. Within 3 days of my first visit I spiked a fever of 105 and could not even get out of bed. I was immediately sent to the Dr who perscribed the antibiotics. Within a few days I felt better but remained on a course of drugs off and on for over 2 1/2 years. I have been left with sever joint pain, and other neurological symptoms. I luckily still am able to work but woory every time I see a tick or get one on me or my family.
The disease is horrible and I know I am a lucky survivor. I will state that while sick for the first few months I thought I was dying. I felt the worst I have ever felt in my life. Your article does great service to enyone who even suspects they were bitten as immediate medical treatment is essential even if there is no sign of the disease immediatly. The time for treeatment is short to avoid further damage to the body.
Thank you for sharing your story.
{"commentId":7141651,"threadId":"581206","contentId":"2831343","authorDomain":"rjellisjr"}
- 2 votes
#10 - Mon May 18, 2009 9:54 AM EDT{"commentId":7141785,"authorDomain":"sandrafdonovan"}
Mr. Baiata, you and your family have my deepest sympathies. I am so sorry for the loss of your beloved sister. Your article points to the truth that medicine is not an exact science and doctors do not have the wisdom of god and should not be treated as though they do. I am sorry your sister was the unfortunate victim not only of this horrible disease that has affected so many lives but also a medical establishment that is not very knowledgeable nor responsive to the needs of its patients.
{"commentId":7141785,"threadId":"581206","contentId":"2831343","authorDomain":"sandrafdonovan"}
- 4 votes
#11 - Mon May 18, 2009 10:01 AM EDT{"commentId":7141786,"authorDomain":"awiggins1"}
Dear John:
I read your story with special interest. In 1999, when I was 48, I was bitten by a tick that carried Lyme Disease. Within 1 month I had fevers and chills which were, strangely, gone the following morning. 2 months later I had a large "bullseye" marking on my abdomen. This is the hallmark sign of Lyme Disease. My husband, a physician, recognized the marking immediately. He started a course of antibiotics which I took for 2 months. During that time I had excruciating joint pain and constant nausea or fatigue. Some of this was a side efffect of the antibiotic. Unfortunately, the disease had already crossed the blood barrier, and it was in my brain. The oral antibiotic had no effect. This is undoubtedly your sister's situation. Once it is advanced to the spine or brain, NO oral antibiotic will touch it. I entered the Rocephin IV Lyme Disease Program. For 30 days I received daily IV's of Rocephin. There is NO OTHER treatment for advanced Lyme Disease. My insurance company paid for it, about $20,000. Most companies will not pay and the patient is doomed. I was cured in 30 days and have had no sign of it since. But I literally went from being an active racquetball player to chronic pain in 1 month. This is a horrible disease.
John, you should use this experience to help encourage legislation requiring insurance to pay for the Rocephin IV Program. Do a special TV program-something. The cure is already here!!! The insurance companies fight the IV program all the way. People don't have to die, or want to die over this.
My sympathies to your family
Allison and Robert Wiggins, M.D.
San Antonio, Texas
{"commentId":7141786,"threadId":"581206","contentId":"2831343","authorDomain":"awiggins1"}
- 6 votes
#12 - Mon May 18, 2009 10:01 AM EDT{"commentId":7143050,"authorDomain":"TrevorinSpotsy"}
While I find it wonderful and an absolute blessing that the Rocephin IV program worked for you, you are grossly overstating it's benefits. My wife received Rocephin intraveniously for two months. While her conditioned improved, she was not cured. Also, it often comes with undesired side-effects. Many people, my wife included, lose their gall bladders from the Rocephin IV treatment.
Also, something I didn't see mentioned yet is that Lyme Disease often comes accompanied by a co-infection such as babesia. Often the co-infections go undiagnosed and untreated and, in the end, cause just as many problems as the lyme disease.
{"commentId":7143050,"threadId":"581206","contentId":"2831343","authorDomain":"TrevorinSpotsy"}
- 2 votes
{"commentId":7144448,"authorDomain":"awiggins1"}
Hi Trevor: I did have a gall bladder problem one evening during my Rocephin program. 50% of people on Rocephin will develop "sludge" in the gall bladder. It is very painful. That evening my husband, an ER physician said, "look, you have some sludge caused by Rocephin. If we go to the ER they may remove your gall bladder thinking it is an infection. What you can do and start drinking water non stop for the next half hour and force the sludge through." I said "you're kidding right?" I starting drinking the water even though I was in pain, and suddenly, a while later the pain disappeared. It was painful. But my husband sees gall bladders very frequently and he was right I gave my home health nurse "what for" the next day for not telling me about tis side effect. She just shrugged.
Good luck.
Allison
{"commentId":7144448,"threadId":"581206","contentId":"2831343","authorDomain":"awiggins1"}
{"commentId":7144484,"authorDomain":"jessix"}
Your post may possibly save many people from the fate of untreated Lyme Disease.
Most likely the disease is ignored because it is not financially rewarding to test or treat.
IV Rocephin is a real wonder drug. It saved me from consequences of a post-surgical staph infection.
For people who are uninsured or underinsured, it is possible to negotiate with the local companies that prepare the Rocephin pumps. You can buy your 30 day course of treatment on the side if the insurers refuse to pay.
An alternative is to threaten every medical provider and facility with a malpractice lawsuit if they refuse to give you the proper treatment based on your ability to pay. If a simple non-experimental 30-day treatment with IV Rocephin is THE definitive treatment for advanced Lyme disease, it is malpractice to withhold or avoid recommendation based on ability to pay.
Will these providers want to let the courts decide the importance of sound clinical practice with them as the defendents? The cost of this type of litigation eclipses the cost of 30 Rocephin pumps and 1 access point for the daily treatment.
{"commentId":7144484,"threadId":"581206","contentId":"2831343","authorDomain":"jessix"}
{"commentId":7147814,"authorDomain":"katycfinch"}
Dear John:
I read your story with special interest. In 1999, when I was 48, I was bitten by a tick that carried Lyme Disease. Within 1 month I had fevers and chills which were, strangely, gone the following morning. 2 months later I had a large "bullseye" marking on my abdomen. This is the hallmark sign of Lyme Disease. My husband, a physician, recognized the marking immediately. He started a course of antibiotics which I took for 2 months. During that time I had excruciating joint pain and constant nausea or fatigue. Some of this was a side efffect of the antibiotic. Unfortunately, the disease had already crossed the blood barrier, and it was in my brain. The oral antibiotic had no effect. This is undoubtedly your sister's situation. Once it is advanced to the spine or brain, NO oral antibiotic will touch it. I entered the Rocephin IV Lyme Disease Program. For 30 days I received daily IV's of Rocephin. There is NO OTHER treatment for advanced Lyme Disease. My insurance company paid for it, about $20,000. Most companies will not pay and the patient is doomed. I was cured in 30 days and have had no sign of it since. But I literally went from being an active racquetball player to chronic pain in 1 month. This is a horrible disease.
John, you should use this experience to help encourage legislation requiring insurance to pay for the Rocephin IV Program. Do a special TV program-something. The cure is already here!!! The insurance companies fight the IV program all the way. People don't have to die, or want to die over this.
My sympathies to your family
Allison and Robert Wiggins, M.D.
San Antonio, Texas
Alison, you should write this kind of insurance reform that needs to be done. write to whitehouse.gov you have 5000 words you can write the president about anything besides health care things. I have written at least 15 times. I suggested a doctors feed back site just for health care feed back since they are going to address it and insurance etc. Doctors best get there input in there so that it can be good for patients and them.this is a perfect example of insurance abuse of patients.
www.whitehouse.gov for anything
.
Katy
{"commentId":7147814,"threadId":"581206","contentId":"2831343","authorDomain":"katycfinch"}
- 1 vote
{"commentId":7141891,"authorDomain":"joe-bourguignon"}
I hope with this terrible event the medical community will take to heart the seriousness of treating this disease with as much tenacity as they do others that are stereotyped as "more important"? We are her witnesses to this incident. For those of us who are Pet owners, all we got was a shrug of the shoulders from folks that were as more focused on their Ice Cream sundaes as they are of hearing of a disease that does not affect them directly in their lives. Now that this story has claimed a persons health, perhaps we all can relate to the pain an suffering of our four-legged friends for once. But I doubt it, people are crap, they are selfish, and they dont care about anything outside of their little worlds.
Ask someone that did stop to save a dog on a highway after it had been hit by cars and left to suffer the remaining determined flow of self-absorbed transients. Not a one stopped and asked me, do I need help.
Thats just the way the human race is, selfish.........; we all like to talk the talk, but no one really walks the walk.
By the way, that dog I saved, still lives with me. And yes, I do treat it monthly with a good bath and K9/Advantix treatments to prevent the Ticks from having a durable feast.
{"commentId":7141891,"threadId":"581206","contentId":"2831343","authorDomain":"joe-bourguignon"}
- 2 votes
#13 - Mon May 18, 2009 10:07 AM EDT{"commentId":7141920,"authorDomain":"sgates-1"}
{"commentId":7141927,"authorDomain":"ilovepopcorn2"}
Dear Mr. Baiata,
I am so sorry for your loss, and so very sorry your sister did not find the help and understanding she needed.
I almost don't want to write this, because it makes me so sad your sister could not find help for her hyperacusis, and there is help available. So I am writing this for the people who will read your article, who have this condition, and who hope your article will give them information that will help them.
I had hyperacusis from Lyme also. The sound dropping a tiny item on the floor would make, was like a sledge hammer hitting my temples (where the sound centers of the brain are located). Rattling of newspapers was torturous. Some voices were unbearably painful to hear. I had to unplug my refrigerator because it sounded like a jet plane taking off right next to my head. In fact, I often slept in my closet. But after a year and a half of TRT, () I was on the way to having normal hearing. I wish your sister could have known about this.
TRT will help people who have hyperacusis. It will save their lives.
{"commentId":7141927,"threadId":"581206","contentId":"2831343","authorDomain":"ilovepopcorn2"}
- 2 votes
#15 - Mon May 18, 2009 10:09 AM EDT{"commentId":7141936,"authorDomain":"mccall1709"}
John:
I am sorry fot the loss of your lovely sister. I want to thank you for putting this devastating disease on the front page, which is where I believe it needs to be every day. Its a horrible disease and will continue to escalate and the public will finally realize what has been swept under the carpet way too long. I have lyme disease and babeosis and didnt have the noise issue except in the beginning but had serious other ear problems that still plague me. I was bitten in Maryland on the Chesapeake Bay while on vacation. Never saw the tick and it was all to clear to me why when I saw the pictures months later (your picture is great). I had an lovely infectious disease doctor tell me I should book an appointment with a therapists. This is so disheartening for someone who was so in tune to her body and knew it wasnt in my mind! I didnt listen to him but sought out doctor after doctor to try and get my life back. I was diagnosed with lyme and babeosis in November 08 nearly 2 months after that beauitful vacation with my family. My voice will not be silenced. I will continue to speak out on this disease. Afterall, it is not going away until something is done. Please ask your representative to co-sponsor bill HR 1179 up for vote soon. Thanks
{"commentId":7141936,"threadId":"581206","contentId":"2831343","authorDomain":"mccall1709"}
#16 - Mon May 18, 2009 10:10 AM EDT{"commentId":7141956,"authorDomain":"thinkfolks"}
Thank you for sharing your story. My husband also has long term lyme and it took over a year for it to be diagnosed from the time he started experiencing severe joint pain. We believe that he'd had it for five years already by then. He never had the rash either. He's had some neurological symptoms that mimic mini-strokes, which was very scary too.
People should also be aware that the ticks that carry lyme also carry other diseases, my husband got babesia as well as lyme; and if the doctors had known the symptoms they would have been able to diagnose it more quickly. The babesia showed as unexplained sweats, he'd just be sitting at his computer and would be soaked in five minutes. He also had a fever of over a hundred for a year a while back, and none of the doctors could figure anything out. They just said we dunno essentially. They did test for HIV, which was negative.
We're doing the antibiotics and hoping it works. Best of luck to all the other sufferer's out there.
{"commentId":7141956,"threadId":"581206","contentId":"2831343","authorDomain":"thinkfolks"}
- 1 vote
#17 - Mon May 18, 2009 10:11 AM EDT{"commentId":7189972,"authorDomain":"hellocatfish"}
I didn't know that about Babesia. I have a LOT of the symptoms people mention here. And goodness knows I've been bitten by ticks over the years, but to my knowledge never got the bullseye rash. I have had problems with unexplained sweats and regulating body temperature. I don't have problems with my symptoms all of the time. So I never really thought to seek diagnosis or treatment. I figured I just might be getting arthritis at an early age when the joints act up. Didn't know what to make of the other symptoms and after being dismissed offhand by previous docs I haven't yet brought it up with my current one. Oh well, this thread is certainly educational.
{"commentId":7189972,"threadId":"581206","contentId":"2831343","authorDomain":"hellocatfish"}
{"commentId":7141985,"authorDomain":"aliward0702"}
I am so deeply saddened by this story - and so very thankful that the doctor I saw when I started having Lyme symptoms (even though he "doubted" me) prescribed a strong course of antibiotics immediately - before the test results came in. That was over 10 years ago and the only residual I have now is arthritis in my fingers. The test came back positive for Lyme and for RA, surprisingly (the rheumatoid arthritis specialist I spoke with said that this is common even though I didn't have RA). I now realize how very lucky I was. I treasure my life.....thank you for writing this article.
{"commentId":7141985,"threadId":"581206","contentId":"2831343","authorDomain":"aliward0702"}
- 1 vote
#18 - Mon May 18, 2009 10:13 AM EDT{"commentId":7141998,"authorDomain":"rn-plus"}
This story has brought tears to my eyes. It's so sad, in so many ways. Had only the first doctors did their homework for your sister and ordered more involved Lyme tests... My heart goes to you and your family...
I've had some strange symptoms myself for over two years and had been tested for Lyme's, which turned out to be negative. However, it was a single blood test and I am afraid, it might not be as definitive as I previously thought.
Lyme disease is on the rise in the area where we live (in NH) and it's scary, b/c even carefully checking yourself over after being outdoors might not be effective - some of the deer ticks are barely visible to the eye. This is especially worrisome for those of us who have small children. Wouldn't they be even more difficult to diagnose by such a primitve single test, in the absence of symptoms early on?! Thank you so much for more bringing light to this disease!
{"commentId":7141998,"threadId":"581206","contentId":"2831343","authorDomain":"rn-plus"}
#19 - Mon May 18, 2009 10:13 AM EDT{"commentId":7142019,"authorDomain":"micheesfriends"}
This truly was a horrible situation and one that could have been prevented. A close friend of our family suffered through so much over the past few years also battling Lyme Disease. She was also misdiagnosed for a couple of years and treated like a hypochondriac herself. Finally someone figured it out and sure enough...it was Lyme disease. She has been very sick for a long time, seeing specialists in NY (we live in MI). Then after years of battling Lyme and getting nowhere she gets diagnosed with Breast Cancer on top of it. How does a wonderful young woman (in her thirties when this started) go from being an active joyful person to being cooped up away from everyone and so miserable from the pain? The docs for the Lyme told her on a positive note the chemo she would get for the cancer should actually kill the Lyme disease. They couldn't give her chemo for Lyme, because it is a cancer drug (even though it could have helped and done so quickly).
I don't know. I think sometimes this whole medical field is messed up. I once wanted to be a part of it, but I don't think I could handle all the crap with the insurance companies, the drug companies and everything else. I just don't get how something like that can go undiagnosed for so long. Would it be so hard or expensive to just test for it just in case? I don't get it.
Anyway, I'm very sorry to hear about the woman in this story. It is so sad that something that could be taken care of right away ended up ruining her life (and that of her family). It truly is heartbreaking.
{"commentId":7142019,"threadId":"581206","contentId":"2831343","authorDomain":"micheesfriends"}
- 1 vote
#20 - Mon May 18, 2009 10:15 AM EDT{"commentId":7142050,"authorDomain":"karentibbies"}
This story made me cry! Beautifully written, sad, and touching nerves that haven't been touched in such a long time.
My son-in-law thankfully found a doctor right away after noticing the 'circle' of red on his shoulder. Luckily my daughter found that tick before he became extremely ill. Painful enough without all the other effects from long term damage. Today he shows no symptoms and with a new baby, thankfully so! Thanks for the beautiful story...I know the lady was special and your story proves that!
{"commentId":7142050,"threadId":"581206","contentId":"2831343","authorDomain":"karentibbies"}
#21 - Mon May 18, 2009 10:16 AM EDT{"commentId":7142053,"authorDomain":"im-wright72"}
Dear John,
You brought me to tears. I have no siblings and can't imagine your family's pain. I'll put you and your family on our prayer list. It won't bring Sue back, but maybe it will bring some comfort and joy back into your lives.
{"commentId":7142053,"threadId":"581206","contentId":"2831343","authorDomain":"im-wright72"}
#22 - Mon May 18, 2009 10:17 AM EDT{"commentId":7142061,"authorDomain":"lgkielty"}
My deepest condolences and empathy. I know how painful it is to watch someone suffer with a tick borne illness. The helplessness you feel in the face of it is is overwhlming. In my case it was my mother and it was erlichiosis, not Lyme. It damaged her heart and her nerve endings. She had only one kidney and the pain medications she had to take to get through a day damaged it as well. The pain was unbearable and the resulting congestive heart and kidney failure finally killed her. She lived with it for 6 years. She begged the doctors for more pain relief but they were concerned she would become addicted or that they would become the targets of an investigation for over prespcription. Addiction or unbearable pain - the doctor's couldn't understand. She wished to kill herself but did not out of concern for her grandchildren. The most pain relief she ever had was in her last days with the morphine provided by hospice. I truly feel your pain. I am so sorry but at the same time understand why your sister did what she did. May you find peace in your memories.
{"commentId":7142061,"threadId":"581206","contentId":"2831343","authorDomain":"lgkielty"}
- 2 votes
#23 - Mon May 18, 2009 10:17 AM EDT{"commentId":7142094,"authorDomain":"rosesinjanuary"}
The poor girl couldn't stand it. I"ve struggled with this disease since 96 and one of the symptoms was heightened sensitivity to sound, I,n however was lucky this symptom did not persist it came and went like a lot of my other symptoms. My prevalent symptom is pain esp in the neck and knees, fatigue and confusion, I do remember though the short time every noise was magnified I could not have lived with it either. I am so sorry.
{"commentId":7142094,"threadId":"581206","contentId":"2831343","authorDomain":"rosesinjanuary"}
#24 - Mon May 18, 2009 10:19 AM EDT{"commentId":7142104,"authorDomain":"paesquillen"}
Mr. Baiata, Your article is a wonderful and heartfelt tribute to a sister whom you deeply loved. I have worked in physician offices for over 25 years..when you say there were doctors who simply did not believe her depth of pain; I want you to know there is a reason for this: so many patients lie & cry wolf. It sounds harsh, but after all these years, I've learned this: 98% of the patients ARE only looking for pain meds and/or anti-anxiety meds, with NO REAL PAIN like your sister was suffering from. So the doctors become jaded and sadly, do not see what's right in front of them with patients who truly are in desperate need of their help. I'm sorry she was misdiagnosed for so long and had to suffer. Please take comfort in knowing she is pain free and you have so many happy memories of your sister. The story moved me beyond words. She was, in her own way, extremely courageous to be able to end her suffering. You have quite the angel watching over you and your family. Thank you for your candid story.
{"commentId":7142104,"threadId":"581206","contentId":"2831343","authorDomain":"paesquillen"}
#25 - Mon May 18, 2009 10:20 AM EDT{"commentId":7165859,"authorDomain":"rkopek"}
I worked as an RN for 35 years and saw many patients written off as hypochondriacs when the physician couldn't figure out what was wrong. They were not drug seekers, many were "health nuts" who had done much research on their own to live a healthy lifestyle, use alternative treatments, try to figure out what was wrong. They were told an antidepressant would help, most times it didn't.
Yes there are many who could control their health, those with Type 2 diabetes or hypertension who refuse to diet or lose wt. or exercise and would rather take a "magic" pill. Guess what, the doc gives them the pills, diet and exercise are brushed over if mentioned at all.
{"commentId":7165859,"threadId":"581206","contentId":"2831343","authorDomain":"rkopek"}
{"commentId":7172722,"authorDomain":"mamawolf33"}
:
As a person who's suffered with moderately-severe to severe pain, originating with Lyme disease--now from its sequelae--I AM looking for pain medication!!! I want the pain to be lessened to a level that I can think of something else.
It's been almost 10 years since I was diagnosed and my pain has NEVER been properly treated (by that I mean getting it down to a 4 or so on a scale of 1-10). Even when my knees were swollen the size of basketballs, doctors would offer 1/2 a vicodin; some insisted it was "all in my head". Now that I've got arthritis all through my spine, fingers, hip, knees and feet, along with peripheral neuropathy, my pain is being taken a little more seriously... by the 14th doctor I've seen in the 12 years since I got sick.
I don't want to be high. I don't even expect my pain to EVER be gone. I just want it down to a level that allows me to have normal relationships with people... that would allow me to get through a shower and breakfast within 3 hours of getting up. I want to be able to go to the grocery store for 30 minutes and still be able to make my husband dinner at night. This is not addict thinking--this is human thinking.
By the way, reading through the posts to get as far as your was... took me more than 18 hours, with the short times I can sit at the computer and with the cognitive issues I now have. I feel almost triumphant!
{"commentId":7172722,"threadId":"581206","contentId":"2831343","authorDomain":"mamawolf33"}
- 2 votes
{"commentId":7142116,"authorDomain":"martay6"}
Such a heartbreak...thank you for sharing your story.
{"commentId":7142116,"threadId":"581206","contentId":"2831343","authorDomain":"martay6"}
#26 - Mon May 18, 2009 10:20 AM EDT{"canLink":false,"threadId":"581206","isPrivate":false}
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