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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":7143099,"authorDomain":"ashley23"}
This story was really touching, and I am so sorry for your loss.
One year ago, my boyfriend was diagnosed with Lyme's Disease. It took months to get a correct diagnosis, and I will never forget the amount of pain that he was in. It started with flu-like symptoms, which disapeared after a few days, and we thought nothing of it. However, then the massive headaches started, along with unbearable joint and muscle pain in the back and neck. He has a pretty high threshold for pain, and was in tears every day at the amount of pain he felt. We went to doctors, who did x-rays and told him he must have a pinched nerve and just to take it easy. He had lost his appetite, and could barely get out of bed. I knew it was something else, but noone would listen. We went to the ER one night and the doctor looked at us like we were idiots and thought he was making his story up. We asked for a Lyme test, and she said it wasnt needed. Then one morning we woke up and he had developed Bells Palsy in the right side of his face, and thats when we knew it was something more. We took him to a different hospital where they immediately admitted him at the sight of the bells palsy, which was quickly spreading to the other side of his face too. The doctor said they had only seen one case of bi-lateral bells palsy before and it was related to Guillen-Barre syndrome, so thats itinitally what they thought he had. However, they also did a Lyme test. The positive Lyme test came back the next day, and it was such a relief to finally have an answer. He also had developed Lyme's meningitis. He had to recieve 28 days of at home IV antibiotics, but he is doing well today. He doesn't have really any lingering symptoms, except for some nerve damage in his face where his one eye falls a little lower than the other. But we are lucky it got diagnosed when it did, because it could have gotten worse very fast.
{"commentId":7143099,"threadId":"581206","contentId":"2831343","authorDomain":"ashley23"}
- 2 votes
#51 - Mon May 18, 2009 11:17 AM EDT{"commentId":7143149,"authorDomain":"joe-70"}
I too had what they call "tick fever" here in Oklahoma. My blood presure went through the roof, passed out in the ER. They thought I was having a heart attack. After three days in ICU they let me go. I asked what was wrong, all they could say was "well, it's not your heart, here is your bill". I went on to feel like I was going crazy, could not hardly walk, pains all over my body and could barely speek. All I could do was stutter and stammer. It was like I was in a shell of a man looking out. Went to doctor after doctor until one wanted me to see a psycho doctor. Just because they cannot explain something, they push it off on anything to get rid of you. Finally after alot of study on my own I went to see a good friend that was also a PA. Told him my story as I stuttered. He looked at the tell tale mark on my body and flew into a rage that no MD or DO could not recognise the signs. I was on an antibiotic for three months and finally got well. I, to this day still have a relapse every now and again. This is a terrible disease that is not very understood. I can totally understand how your sister felt. God bless you and your family and keep fighting to spread your words. This may just help another human from having to go through the pain and suffering.
{"commentId":7143149,"threadId":"581206","contentId":"2831343","authorDomain":"joe-70"}
#52 - Mon May 18, 2009 11:20 AM EDT{"commentId":7143170,"authorDomain":"cjtalley2"}
What an extraordinarily moving and poignant story. Thank you for sharing it with us.
{"commentId":7143170,"threadId":"581206","contentId":"2831343","authorDomain":"cjtalley2"}
#53 - Mon May 18, 2009 11:22 AM EDT{"commentId":7143196,"authorDomain":"sgirl98"}
Thank you so much for writing this article! My mom, also named Sue,died on June 30, 2005 after 10 years with Lyme disease. She was 55, I was 28. Most of her last five years were a nightmare. She was treated like a hypochondriac by not only doctors, but some friends and family as well. Tests done on her heart showed significant deterioration, and MRI's on her brain showed lesions. She complained about her back killing her all the time, and an x-ray taken just a few days before her death showed so much deterioration in her lower spine that the doctor was shocked. We don't even know how she continued to walk. I will regret the rest of my life that I didn't know how to help her more. Why are doctors in such denial about this? She literally worked her butt off her entire life up until a year or so before she died when she just absolutely couldn't do it anymore. Yet she still felt like she was being lazy and it must be really just be in her head because of the way some of the doctors treated her like Lyme disease isn't real. I hope that people like you will finally bring some much needed attention to this horrendous disease so people will stop dying from it. I am so sorry for the loss of your sister.
{"commentId":7143196,"threadId":"581206","contentId":"2831343","authorDomain":"sgirl98"}
- 1 vote
#54 - Mon May 18, 2009 11:22 AM EDT{"commentId":7143294,"authorDomain":"brloue"}
Why dont doctors listen to female patients ,it seems to me they think its a hormonal or just in their heads.If it was a male pt it probably would be a differnt story.Doctors should always test for lyme disease! It should be a basic test for everyone because ticks are everywhere!
{"commentId":7143294,"threadId":"581206","contentId":"2831343","authorDomain":"brloue"}
- 1 vote
#55 - Mon May 18, 2009 11:28 AM EDT{"commentId":7143451,"authorDomain":"deborah5109"}
I'm very sorry to hear about your sister. Anyone who has experienced this disease should read the book, "Lab 257 - The disturbing Story of the Governments secret Plum Island Germ Laboratory." by Michael C. Carroll.
{"commentId":7143451,"threadId":"581206","contentId":"2831343","authorDomain":"deborah5109"}
#56 - Mon May 18, 2009 11:38 AM EDT{"commentId":7143490,"authorDomain":"ajfine19"}
Dear John,
I'm sorry about your horrible loss but, like others, am glad you've managed to get Lyme Disease into the headlines, esp now, at the beginning of tick season. I was bitten (with bullseye rash) in 1996, received 15 days of antibiotic treatment and thought I was okay. The disease was still in me, continuing to progress, and nobody was able to give me an accurate diagnosis...at least not for 9 years. By then, I was barely able to walk; my thinking was severely impaired; I was having seizures; I had severe sound and light sensitivity, as well as crippling exhaustion and debilitating depression.
I have now been on antibiotics 5 years. My career as a national journalist has ended. I'm back at work (in a different job) but still suffer some residual symptoms. Despite taking drugs for the depression, it periodically comes over me in huge waves.
The medical ignorance surrounding this disease is inexcusable, as is the increasing toll taken by Lyme and other tick-borne diseases. One of the most difficult things, for me, was the inability of my friends to understand just how sick I was (and, in some ways, continue to be).
Four or 5 months ago, an acquaintance of mine lost her life due to complications from Lyme.
I hope we continue to shine a light on these diseases!
Thanks for your article
{"commentId":7143490,"threadId":"581206","contentId":"2831343","authorDomain":"ajfine19"}
- 1 vote
#57 - Mon May 18, 2009 11:40 AM EDT{"commentId":7144301,"authorDomain":"awiggins1"}
Headwinds:
Did you get IV Rocephin for at least 30 days?
Read my story posted on an earlier page.
Allison
{"commentId":7144301,"threadId":"581206","contentId":"2831343","authorDomain":"awiggins1"}
{"commentId":7166349,"authorDomain":"rkopek"}
IV Rocephin is not the answer for everybody. There are over 100 different known strains of Lyme in the US. Each of us is affected differently. I am now allergic to every antibiotic out there and must rely on alternative therapies for "control" not "cure".
There is no simple answer, that is the problem
{"commentId":7166349,"threadId":"581206","contentId":"2831343","authorDomain":"rkopek"}
{"commentId":7143492,"authorDomain":"nsjk2004"}
Dear John
First, let me express my deepest condolences for your loss. I lost one of my best-friends of 28 years to suicide 10 years ago. The pain is as great today as it was when it happened. She found out she had an incurrable disease and committed suicide less than a week later.
As far as Lyme disease, another best friend of mine has been battling it for years. Same story as everyone else, the misdiagnosis's, the it's-all-in-your-head crap, the doctors who don't listen and/or don't care, the insurance company won't pay for your treatment crap.
Here is something that most of you out there might not know.
THIS DISEASE CAN BE TRANSMITTED TO YOUR UNBORN BABY IN UTERO. MY FRIEND UNWITTINGLY PASSED THIS NASTY DISEASE ON TO HER UNBORN CHILDREN. THEY ARE 13 AND 11 AND HAVE SUFFERED WITH WITH DISEASE OF ALL OF THEIR LIVES.
My thoughts and prayers to all of you suffering from this disease.
Sue
{"commentId":7143492,"threadId":"581206","contentId":"2831343","authorDomain":"nsjk2004"}
#58 - Mon May 18, 2009 11:40 AM EDT{"commentId":7143579,"authorDomain":"xoxchi"}
Mr. Baiata: my condolences on the loss of your sister, but what a beautiful and educational article you have written memorializing her.
I also contracted Lyme disease in 2000. I developed flu-like symptoms incl. a high fever that would not break. The rash did NOT develop at the site of the tick bite. The doctor correctly diagnosed the disease, but mis-treated me with too low a dose of antibiotics for too short a time. As a result, the disease was only put in remission. I collapsed a year later due to cardiac insufficiency. The spirochetes had apparently damaged my heat's atrial ventricular node that regulates the beating of the ventricals. I now have a pacemaker to maintain a productive heart rate and spent a month on IV Rocephin treatment.
It is important to let people know the range of potential symptoms they may experience, because Lyme is so frequently mis-diagnosed and inadequately treated.
{"commentId":7143579,"threadId":"581206","contentId":"2831343","authorDomain":"xoxchi"}
- 1 vote
#59 - Mon May 18, 2009 11:45 AM EDT{"commentId":7143584,"authorDomain":"vickiehaskins"}
This is a very touching story and one that I can relate to.
I had Lyme's Disease in 1993. I went undiagnosed for a year. The doctors tried all kinds of antibiotics, sent me everywhere for more tests, and, finally, my blood work was sent to a research facility where they were finally able to diagnose the disease. After a few weeks of treatment, the initial symptoms disappeared, except that I was left with arthritis; however, as I have gotten older, the damage caused to my body is now showing up. About 10 years after the initial diagnosis, I started have severe problems again. In 2006, I was diagnosed with an autoimmune disease, Lupus, which I have to continually battle. Then, in 2007, I began have severe heart arrhythmia and I am on several medications for that problem. The doctors stated that Lyme's damages the electrical part of the heart. I will eventually have to have a pace maker/defibrillator. You can just never give up with this disease.
{"commentId":7143584,"threadId":"581206","contentId":"2831343","authorDomain":"vickiehaskins"}
#60 - Mon May 18, 2009 11:45 AM EDT{"commentId":7148733,"authorDomain":"fulkerforce2000"}
My wife was diagnosed with the same thing. You can still be cured. Don't listen to the "experts" BS. You need a 30 day regimen of IV anti biotics. The bad news is it is a guarded secret as to the concoction and it cost 40 grand to get the treatment from a specialist.
{"commentId":7148733,"threadId":"581206","contentId":"2831343","authorDomain":"fulkerforce2000"}
- 2 votes
{"commentId":7176736,"authorDomain":"awiggins1"}
Johnny is absolutely correct. I only had Lyme eight months when my eye doctor (retinalogist) caught it on a routine exam and said, " you have active Lyme in your retina!" He sent me from his office to an Infectious Disease doctor, and I began IV Rocephin the next day. 30 days later, the eye doctor directed Blue Cross and Blue Shield to approve another 10 days of IV "to be sure." I have never had another symptom since 1999. Blue Cross gave me no trouble at all-don't know why-but they paid my bill of $20,000+. My husband, a physician, says it is because a retinalogist claiming to see Lyme proves it has crossed the blood barrier in order to be in the eye, and insurance can't argue with him. A blood test means nothing compared to the eye exam revealing Lyme in the eye. I would suggest a visit to a local Retinalogist in one's area to have him or he look for active Lyme.
{"commentId":7176736,"threadId":"581206","contentId":"2831343","authorDomain":"awiggins1"}
- 1 vote
{"commentId":7143650,"authorDomain":"hehheh"}
My heart aches for your loss. A neighbor of mine came down with lyme disease about 16 or 17 years ago. To be more accurate, her symptoms became prevelant when she started loosing her hearing and her sight. All of her local doctors miss diagnosed her. She was given the test for lyme, but at that time few in the medical profession knew that antibiotics would give a false reading. The tests came back negative for lyme. She went to every major hospital in the Philadelphia area and the only diagnosis they could agree on was MS. A local Lions Club I belonged to at that time sent her and her husband to the Mayo Clinic to see if they could help this young mother of 3 boys. They diagnosed her with MS also. Seems to be a catch all disease when they cant figure out what is wrong with you. She eventualy became so sick that she was in a fetal position in her bed and the doctors were telling her husband to be prepared for the worse. Imagine him telling his 3 sons that piece of information. As luck would have it, her husband was listening to a radio show and they had a doctor on the show from the philadelphia area who specialized in lyme disease and other similar diseases. He contacted the doctor and explained the story to him and was told to bring anyone who knew her from an early age to the present. It became clear that she had contracted Lyme when whe was about 11 or 12 years old. She came down with a rash that was diagnosed as german measles. Later at 13 or 14 years of age she came down with juvenile arthritis. The symptoms seemed to stop after that until her early 30's when she had an operation on her wrists for carpel tunnel syndrom. Her rehab for the operation did not go as planned. She lost feeling in her hand and then in her arm. Her one leg started giving her problems. Next she lost her hearing and then her sight started fading away. This new doctor told her husband that he was positive she had lyme disease. He started her on a drug that was given thru a tube installed in her chest. This went on for over a year. After a month she had regained her hearing and she could see again. She was walking and was almost normal except for her one leg. Lack of use had caused some permanent damage and she had a limp and needed some support from a cane. But it was like a miracle. However, several years later the disease came back with a vengence. Her doctor told her that there were no case histories to tell him that this would occure. Most if not all people that had lyme that bad were dead. All of the problems put her over the edge and she became emotionaly distraught. She and her husband divorced, and she no longer lives in the area, but my wife see's her from time to time. She is still alive and functioning as best she can, but what a hard and hellish toll that disease has taken from her and her family.
Harry
{"commentId":7143650,"threadId":"581206","contentId":"2831343","authorDomain":"hehheh"}
- 1 vote
#61 - Mon May 18, 2009 11:49 AM EDT{"commentId":7143682,"authorDomain":"john00911"}
{"commentId":7143791,"authorDomain":"renee-viens"}
Wow, how sad that no doctors would take any type of measures to help this woman. I would like to comment though, that suicide is NEVER the answer...
{"commentId":7143791,"threadId":"581206","contentId":"2831343","authorDomain":"renee-viens"}
#63 - Mon May 18, 2009 11:57 AM EDT{"commentId":7148806,"authorDomain":"fulkerforce2000"}
Maybe if you felt the pain of living with the disease and the daily horror of it you might think before you speak.
{"commentId":7148806,"threadId":"581206","contentId":"2831343","authorDomain":"fulkerforce2000"}
- 3 votes
{"commentId":7151379,"authorDomain":"agenias"}
AtlanticRenee,
I understand what you are saying. I too used to say the same thing! How could anyone kill themself?? It sounds terrible. THEN I got Lyme. I was 17 years old and doctors told me first it was mono, then Chronic Fatigue Syndrome. I stopped going to doctors. When you are so sick and you can't live, life just doesn't matter anymore.
I know you mean well....but if you could have just stepped in my shoes for about a week, you would totally understand! And I can handle a lot of stuff, birthed a posterior baby without pain meds. That was NOTHING compared to Lyme. And I'm still sick, but my kids give me a reason to live.
{"commentId":7151379,"threadId":"581206","contentId":"2831343","authorDomain":"agenias"}
- 2 votes
{"commentId":7143849,"authorDomain":"ziradith"}
I am so sick of Doctors who won't listen to their patients, instead they ramble on what they believe is the cause of the illness. Often times, being over-weight is their argument for a person feeling unwell.
I am sorry for your loss, John.
{"commentId":7143849,"threadId":"581206","contentId":"2831343","authorDomain":"ziradith"}
- 1 vote
#64 - Mon May 18, 2009 12:01 PM EDT{"commentId":7143871,"authorDomain":"mabellia"}
I am sorry for your loss. My niece has had lyme for about 5 years. She was misdiagnosed right from the beginning. She became pregnant during this time. Now her son who is only just turned 5 has been diagnosed with lyme. This horrible disease was passed on to him through the pregnancy. I know 4 people that are suffering horribly with this disease and yet you dont hear anything about it. All four of these people have been from doctor to doctor being told that they were crazy or hypocondriacs. My friend was told that she had munchausen's because she was taking her daughter to so many doctors. Doctors PLEASE wake up and people dont be in such a hurry to criticize. You dont know how hard it is to watch a loved one suffer and know that there is nothing you can do about it.
{"commentId":7143871,"threadId":"581206","contentId":"2831343","authorDomain":"mabellia"}
- 1 vote
#65 - Mon May 18, 2009 12:03 PM EDT{"commentId":7143925,"authorDomain":"wbamert"}
Dear John,
I was very saddened to see another story of someone suffering with Lyme taking their own life. While I am in slightly better place then your sister, I understand why she would do what she did. I have been to those dark places at times and hope I can keep from going back but my struggle is far from over. It seems I have been suffering with Lyme for about 30 years now. I may have gotten it back in boy scouts. I am 46 now. For the first 10 years I just wondered why my neck hurt and why I was so tired all the time. Over the next 10 years I developed more symptoms and started going to doctors to find out what was wrong. As you might guess I didn't get any quick answers from them. I finally found a Lyme literate doctor and have been under treatment now for about 12 years. I am still waiting for a cure. I mostly read about political break throughs instead of medical ones. While I truly wish your sisters story had a different ending, her story will help those of us still suffering and those that might get infected by letting people know what has been going on. Again, I am so sorry for your family's pain. Watch out for your kids with the ticks. I check mine all the time. They get so mad at me but I can't let this happen to them.
{"commentId":7143925,"threadId":"581206","contentId":"2831343","authorDomain":"wbamert"}
- 1 vote
#66 - Mon May 18, 2009 12:06 PM EDT{"commentId":7143950,"authorDomain":"wnkf"}
I'm really surprised that the doctors involved didn't pick up the Lyme disease. I got Lyme disease in 1991 while working outside clearing brush. I almost always, when I went inside, disrobed by the washer/dryer, and looked for ticks. Lyme ticks are barely visible. My wife would help and go through my scalp. And we would do the same thing for our two young sons. We were living in CT at the time where it was common knowledge and a common problem for people to get Lyme. If you took care of it RIGHT AWAY it was not in anyway debilitating. You were put on antibiotics and were feeling better within days.
It surprises/angers me every time I read a story like this where the patient is misdiagnosed. It's hard to believe that any GP could miss this knowing the devastating effect it could have if not treated immediately.
{"commentId":7143950,"threadId":"581206","contentId":"2831343","authorDomain":"wnkf"}
#67 - Mon May 18, 2009 12:08 PM EDT{"commentId":7143965,"authorDomain":"khambor"}
I am sorry for your loss, but I am so grateful that this story has been told. Lyme disease is not "made up" or "in your head" and many people are misdiagnosed with MS, ALS, Parkinson's Disease, Fibromyalgia and they actually have Lyme disease. Lyme disease is an epidemic and we don't even know it yet. My father, mother and brother all tested positive for Lyme. Doctors diagnosed my father with ALS, but I think they gave him this diagnosis because they don't believe Lyme disease is a "real" problem. It will be 3 years in August that he passed away and deep down, everyone in our family knows he died from Lyme. It can be passed from mother to child during pregnancy and between husband and wife during intercourse. The CDC and NIH thinks giving 2 weeks of antibiotics will cure Lyme but that will only work if you get a bullseye and it is a recent bite. Long-term antibiotics should be given to people who don't know they were bitten, but show signs of other diseases. Also, the Western Blot test, which is the current test for Lyme, isn't very accurate. They have more accurate tests out there, but your insurance companies won't cover them. I just want people to get mad at this situation. I want people to understand that whatever you may have, may have started out as Lyme Disease and it still could be!! Most doctors don't know much about Lyme and they need to be educated. You need to be educated!! Heed my warning, this is an epidemic and we won't know until it's too late. Thanks for reading and I'll get off my soapbox now.
{"commentId":7143965,"threadId":"581206","contentId":"2831343","authorDomain":"khambor"}
- 2 votes
#68 - Mon May 18, 2009 12:09 PM EDT{"commentId":7144969,"authorDomain":"thutchcraft2"}
Don't get off the soapbox! This needs to be spread to the entire medical profession. They swear to "do no harm" but refusing to treat this disease or changing their diagnostic tools is not doing no harm. Perhaps if more insurance company executives were infected it would get to a personal level and the companies would think twice before refusing treatment.
{"commentId":7144969,"threadId":"581206","contentId":"2831343","authorDomain":"thutchcraft2"}
- 1 vote
{"commentId":7144107,"authorDomain":"MrQ"}
I lost my best friend to Lyme's Disease. He was a strong Athletic Man in his thirties. He had never been seriously sick before. It was untreated for 3- 4 years due to not being diagnosed sooner. He fought the hardest he could for a long time. He could not sleep due to pain and was immobilized by the loss of his balance.
He didn't end his life because he was thinking about himself, he was a fighter. But in his sleep deprived mind and with no hope left, sadly my friend ended his life because he didn't want to be a burden on the people around him. We all loved him and would always wanted him to be around. He did what he felt was the best. I wish my friend was still here!
Lyme's Disease is a silent and unnecessary killer, best prevented by education. Most of us has never heard of Lyme's Disease and would not react to the symptoms. Awareness is the best weapon against it!
{"commentId":7144107,"threadId":"581206","contentId":"2831343","authorDomain":"MrQ"}
- 1 vote
#69 - Mon May 18, 2009 12:18 PM EDT{"commentId":7148885,"authorDomain":"fulkerforce2000"}
It is our governments fault as well as the HMO's. They are the true killers of these people. It is because they will not allow DR's to give the proper test without their approval!!! My family has stuggled with this for 13 yrs until I met the "right" people.
{"commentId":7148885,"threadId":"581206","contentId":"2831343","authorDomain":"fulkerforce2000"}
- 2 votes
{"commentId":7144209,"authorDomain":"kfayle-4300"}
I am so sorry to hear of your loss and the pain that your sister endured. This story really hit close to home, as my mom recently suffered through the same horrible disease and outcome. She was a wonderful mother and person. This disease took my mothers life, she suffered and tried to pull through. But as the pain increased and all doctors wouldn't listen or help, it was unbearable. There were so many symptoms that I can't even list. The antibiotic actually made her feel worse and was unable to maintain her treatments. I tried natural methods, but she was so scared that even that would make her feel worse. My mother and I have always had sensitivities to almost all medications, why I am not sure. It is unbelievable to me that the number of Doctors that we saw would literally just look at her and tell her there was nothing they could do. On top of having Lyme's disease they made her feel like she was crazy. She was the strongest, most loving and selfless person I will and have every known.
{"commentId":7144209,"threadId":"581206","contentId":"2831343","authorDomain":"kfayle-4300"}
- 1 vote
#70 - Mon May 18, 2009 12:24 PM EDT{"commentId":7145805,"authorDomain":"jennysantic"}
i can't comprehend that doctors are behaving so ignorantly...this seems like a modern tragedy...
{"commentId":7145805,"threadId":"581206","contentId":"2831343","authorDomain":"jennysantic"}
{"commentId":7144223,"authorDomain":"mcfighter"}
This tragedy did not need to happen. What is more risky? Taking antibiotics for months or years, or considering suicide because the pain has become unbearable? I chose to take antibiotics. It has been 5 years since my diagnosis of Lyme disease and the progression of my disease has been slowed and even reversed in some instances. About 2 months ago, I lost the ability to walk or talk effectively. Antibiotics reversed that loss quickly. I am fortunate that the doctors listened to me and agreed to administer IV antibiotics once again. The studies that show antibiotics do not help after a few months were designed poorly and did not consider the length of antibiotic use that is prescribed in real life by doctors willing to look outside of the little boxes promoted by mainstream medicine. I have been on oral or IV antibiotics now for 5 years. I have had some reactions to antibiotics, but none have been immediately life-threatening. Currently, my pain level is minimal, and I am able to function well enough to have a meaningful life. To me, that is worth any risk long-term antibiotic use could present.
As far as making someone surgically deaf, I do not believe that any nerves would need to be resected. It could have been as simple as removing the bones in the middle ear, which could be replaced at a later date if desired.
I am sorry for your loss, and the loss for your family. This is a trajedy that could have been prevented if more doctors were willing to step outside of their little safe boxes and actually treat an infection that is progressing, killing people either from the infection itself or through desparate measures such as your sister used. Publication of this story may help others to seek help from doctors not blinded by certain medical societies that allow unlimited antibiotic use for treatment of acne but prohibit antibiotic use for diseases such as Lyme disease that can kill people.
{"commentId":7144223,"threadId":"581206","contentId":"2831343","authorDomain":"mcfighter"}
- 2 votes
#71 - Mon May 18, 2009 12:25 PM EDT{"commentId":7144278,"authorDomain":"kenb-jillp"}
Thank you for sharing your beautiful, though painful, story. You, your sister and family have touched many lives. I'm sure your experience will help thousands of others, and I'm so happy to see it on the front page, where it deserves to be. My heart goes out to you and to the countless other families who have lived and endured similar tragedies.
{"commentId":7144278,"threadId":"581206","contentId":"2831343","authorDomain":"kenb-jillp"}
- 1 vote
#72 - Mon May 18, 2009 12:28 PM EDT{"commentId":7144411,"authorDomain":"charlenec"}
Thank you for sharing the story of your lovely sister's struggle with that dreadful disease. She came from a wonderful family which did all that could be done for her. I know Luke will grow up to miss and love his aunt. Thank you again. May God bless each of you.
{"commentId":7144411,"threadId":"581206","contentId":"2831343","authorDomain":"charlenec"}
#73 - Mon May 18, 2009 12:35 PM EDT{"commentId":7144523,"authorDomain":"pminn1608"}
Thank You for sharing your sister's experience with all who read this article. It is disturbing to read Doctor's do not take time to listen to those who need help. To question this lady's decision to end her life is appalling as none of us has a clue what she was going through.
{"commentId":7144523,"threadId":"581206","contentId":"2831343","authorDomain":"pminn1608"}
#74 - Mon May 18, 2009 12:42 PM EDT{"commentId":7144534,"authorDomain":"loveshepherds107"}
My husband tested positive for Lyme and was put on antibiotics at the present moment his is doing fine but I fear that the Doctors today are too quick to dismiss and kind of pain by simply saying is in your head. I notice sometimes that he forgets things a lot and that worries me some. Can anyone tell me if that is a symptom of Lyme?
Thank you for your story it was sad but a beautiful tribute to your sister and I know it will help many people who are just not sure what to do about this horrible sickness.
{"commentId":7144534,"threadId":"581206","contentId":"2831343","authorDomain":"loveshepherds107"}
#75 - Mon May 18, 2009 12:42 PM EDT{"commentId":7145094,"authorDomain":"thutchcraft2"}
Yes, unfortunately memory loss or confusion is an effect of Lyme. My wife, while driving an often traveled route, suddenly had to pull over to the side of the road. She was totally lost and didn't recognize anything in the area.
{"commentId":7145094,"threadId":"581206","contentId":"2831343","authorDomain":"thutchcraft2"}
{"commentId":7145227,"authorDomain":"loveshepherds107"}
Thanks I am going to have him go back in for more work up then. Is she getting any help or do they just have to live with it?
{"commentId":7145227,"threadId":"581206","contentId":"2831343","authorDomain":"loveshepherds107"}
{"commentId":7145621,"authorDomain":"rfmezzy"}
Yes, forgetfulness is a symptom of Lyme. "Brain fog," confusion, reading something and immediately forgetting what you read, getting lost in familiar places -- all are included in the neurological symptoms of Lyme. Don't assume it's just the fact that you are getting older.
Please, please, go to the ILADS.org website, all of you Lyme sufferers. You can find out what the docs who believe that Lyme is real are doing, what tests you can take (there is now one -- measuring CD-57 -- which really works!), and most heartening of all, Dr. Burrascano's article which will help you see that you are NOT crazy and NOT exaggerating -- you really do have Lyme. A diagnosis of Lyme Disease must be based on clinical symptoms, since the blood tests have traditionally been so unreliable, and that means YOUR SYMPTOMS COUNT!!
{"commentId":7145621,"threadId":"581206","contentId":"2831343","authorDomain":"rfmezzy"}
- 2 votes
{"commentId":7147404,"authorDomain":"loveshepherds107"}
Thank you RFM I will start my research right now :)
{"commentId":7147404,"threadId":"581206","contentId":"2831343","authorDomain":"loveshepherds107"}
{"commentId":7147678,"authorDomain":"loveshepherds107"}
Excellent Site Thanks RFM!
{"commentId":7147678,"threadId":"581206","contentId":"2831343","authorDomain":"loveshepherds107"}
{"commentId":7144561,"authorDomain":"officemanager"}
This is a tragic story. Unfortunately, many doctors do not diagnose lyme disease properly. My own brother suspected he had it after a hiking trip in college. He went to the college infirmery to be examined. He even showed them the bullseye on his leg. They basically laughed at him. For two years he has weired symptoms and saw different specialists. Finally, a podiatrist diagnosed him, but it was too late.
He now suffers great pain and is on painful injections that can damage his kidneys.
More needs to be done, but there is not enough people stepping up to make this a serious issue.
{"commentId":7144561,"threadId":"581206","contentId":"2831343","authorDomain":"officemanager"}
- 1 vote
#76 - Mon May 18, 2009 12:44 PM EDT{"canLink":false,"threadId":"581206","isPrivate":false}
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