Archive for Guest Authors

In Memory Of Lindsay K, Lyme Took Her Life

// October 15th, 2010 // 4 Comments » // Guest Authors, LymeBites Blog

(Used with permission from Mona’s site Monamorphosis Blog.)

written by Mona

My friend Lindsay, a 28-year old wonderful young woman, who I met years ago at a Lyme support group and question Board, took her life on September 23, 2010 because of her ongoing battle with Lyme Disease. Because this happened so recently, I have been getting hit with waves of grief, that come and go, and moments of utter despair, frustration, anger, and sadness at all of it. I have never known someone close to me to lose their life let alone take their life from an illness that I also have. It hits very close to home in a surreal way that makes me nauseated to even talk about.

I had spoken with Lindsay many times. She graduated UC Berkeley’s prestigious Boalt School of Law, but became to ill that year to take the Bar Exam and practice law. She became so ill she moved back to the Midwest to have her parents take care of her. Years and years of treatment, and some improvements, but her case seemed unusually difficult. I’ve been through hell and back, repeatedly, I can say that without a stutter, and yet this young woman fought an even harder uphill battle.

Lindsay and I talked and emailed a lot. The severity of her Lyme was extremely intense, but I could relate to every symptom she had. When she told me how her life was so meaningless and painful and empty and she could not go on living like this as a young woman in bed at her parents’ home for years, I knew too well the feelings she talked about. This does not imply that her family wasn’t loving and incredibly supportive; it means that living in bed most of the time while friends your age go on with their lives is incredibly difficult (I know from experience).

Talking of taking your own life is common in the Lyme community.The horrifying symptoms and at-times excruciatingly unbearable treatment (think chemo for years), and the loss of life and identity and loss of any financial stability, and the lack of belief by doctors and even your own family can make you a mess, a puddle of water on the ground wanting to seep into the Earth and never return. There is no way to understand or explain in words the severity of the physical and psychological pain of this disease. However, that said, Lindsay promised me she would never take her life because her sister and closest friend, who had a rare neurological disorder, took her life a year earlier. She told me it would hurt all the wrong people.

Lindsay was right. All those who loved her are in despair. My emotions are mixed, and I find that the grief, anger, despair seeps in when I least expect it. Like today when I went to the doctor’s office we once shared, and cried hysterically out of nowhere.

Lindsay’s mom told me she was experiencing intense anxiety. And I spoke with Lindsay a couple weeks before her death and know she was unusually off kilter. And in that state of Lyme-induced illness and treatment-herxing, she became a different person altogether. The coroner’s autopsy showed swelling of the brain, which is not surprising given the often unimaginable effects of Lyme on the brain.

How Lindsay dealt with the loss of her sister and a torturous disease with a life condemned to a bed so sick to be even unable to do basic things is beyond me. She tried so many treatments, for years, and told me she was going to India next year for stem cell treatment (which has helped many Lyme patients who had not otherwise improved with treatment).

I had no idea and the news of her death came as a shock to me when her mother found my number on her cell phone and called me one Friday night. We were both crying hysterically on the phone. I will never understand how Lindsay’s mother is able to deal with the grief of two lost daughters. But she did make clear that Lindsay took her life because of Lyme and she wanted this to be known. I know it, and her mother knows it. The world needs to know it to understand the severity of this disease that much of the medical community knows nothing about.

With sadness, shock, anger, and tears pumping through my veins, I hung up with Linsday’s mom and realize how close to home this death had hit. I cannot describe it but my closest friend “JB” (who I met through Lyme support and also has late-stage Lyme) responded to my email that described Lindsay’s death and so accurately described the sentiment of the Lyme patient community:

“Oh Mona I want to throw up, cry and crumble all at once—There are so many…family, friends, Dr’s, politicians……….who are in TOTAL disbelief. If not for this disbelief I do not think we would have so many suicides associated with this disease. Yes, we would have some due to the sheer despair of knowing when or if the pain will end—but if we all had support when the pain is so great and our mind is literally failing us, we may be able to hold on just a little longer…maybe much longer.

With all I have, a beautiful family….. 2 amazing children to live for…..I don’t have much support, true believers, and I also have many many disbelievers. I wish I could get them out of my mind–but when you are sick, you are lonely and want empathy and love. Just a common, basic human need.

But because this stupid country with these dumb Dr’s, politicians, health insurance companies…...I dont know how the FUCK we will ever bring light to the most hideous disease I think to ever walk this earth. NO disease I know of makes you feel like you are dying constantly , makes you run to the emergency room because organs are just running out of synch at the moment…..and WORST of all…tell me a disease that truly alters your mind and your thoughts. Gets into your brain and totally changes who you truly authentically are.

This is so awful–God we MUST change things.

I LOVE YOU SO MUCH sweet friend….Love, J”

That sums up how I feel. I am nauseated still. I cannot eat much, and believe me, I need to gain some weight. I am sickened and haunted by Lindsay’s face. I wish she hadn’t done this.

I have always known I would use my law degree to make change; I didn’t expect it would be making change around a disease I knew nothing about. But when life throws you lemons, you make lemonade. I plan on serving a ton of it and pouring gallons on the heads of the IDSA (you can read about them in “The Great Lyme Controversy” page at the top of the blog)!

Lindsay, you are a beautiful and amazing young woman, who is now at peace, I suppose. Your memory and spirit live on and drive me even more to keep up this fight. I would have kept fighting though, I wish you hadn’t left all of us.

How Lindsay’s mother, family, and friends can deal with this amount of grief is beyond me. I certainly cannot imagine anything harder than losing your child. I am republishing Lindsay’s obituary with her mother’s permission:
“Age 28. Cherished daughter, compassionate friend , loyal companion to her dog Louis, Passed away unexpectedly on Sept. 23, 2010, due to complications from Lyme Disease and its co-infections. Born 12/19/81 in St. Louis Park, Lindsay attended St. Louis Park Senior High School (class of 2000), Grinnell College in Iowa (2004), and Berkeley Law School (Boalt Hall) in Berkeley, CA (2007). Although Lindsay graduated, she could not take the Bar and pursue her passion in Public Interest Law, for Lyme Disease had already invaded her body. Her friends would describe Lindsay as kind, caring, compassionate, silly, unassuming and she returned those feelings in her fierce and intense love for her family and friends. She fought Lyme Disease for over 5 years with her usual intensity. After surrendering her spirit to her Saviour, Lindsay has joined her beloved sister Jennie in the Kingdom of God, where they both left behind their broken earthly bodies, and now their souls are together again in the love and joy of Heaven. Preceded in death by her cherished sister Jennifer Jean (Feb 2010), grandparents, and cousin X. Lindsay will be immensely missed but eternally loved by her parents M and T and her dear friends. Services to be held on Saturday October 9, 2010. Donations preferred tohttp://www.turnthecorner.org/content/donate (Lyme Disease advocacy).

I Know Why the Caged Bird Sings…

// July 12th, 2010 // 2 Comments » // Family of Lyme, Fundraising for Lymies, Guest Authors

Shared with us by, Helen Raser.
Written by, Katie Johnston

Meet my beautiful friend Birdie…
One day soon we’ll take on the world again. Keep your head up, sister.

“I know why the caged bird sings, ah me,
When his wing is bruised and his bosom sore,
When he beats his bars and would be free;
It is not a carol of joy or glee,
But a prayer that he sends from his heart’s deep core,
But a plea, that upward to Heaven he flings –
I know why the caged bird sings.”

(Please stay with me here and read this all the way through)

As you all know, I’m currently planning an event called “F U Lyme” at The Other Bar this Thursday, to help raise money for a lady by the name of Elizabeth Chalker. I had the privilege of hearing Elizabeth Chalker’s story from my dear friend and advisor, Helen Raser. What you need to know about Elizabeth is this: She’s 39 years old, was once an accomplished (PhD) Forensic and Sports Psychologist and athlete. Her passion was helping at risk youth and their families, often without payment. Currently, Elizabeth is dying from Late Stage Lyme Disease & Co-Infecions, as well as Lyme-induced Endometriosis, which have virtually taken over her body. Multiple organs and systems are shutting down. Due to medical ignorance surrounding Lyme disease, she has been suffering for over 20 years, debilitated the last 7 years. Without appropriate treatment she will die an agonizing death.

Elizabeth’s body is wracked with pain 24 hours a day – uncontrollable muscle twitches – daily migraines – seizures – convulsions – constant nausea and dizziness – extreme light and sound sensitivity – excruciating bone and organ pain – inability to sleep more than ½ hour at a time – inability to stand long without blacking out – And with virtually no family to help, she lives alone in a cold, dark apartment, in constant agony. Elizabeth’s only chance for the life saving treatment she desperately needs is in Washington State . But treatment will take years and hundreds of thousands of dollars.

In spite of this indescribable torture, Elizabeth has the most amazingly strong spirit and huge heart. She will help anyone who reaches out to her, though no one can help her. Her dream is to be able to dedicate her life to helping others and make a difference in the world. Helping Elizabeth would be like helping thousands. The world needs Elizabeth Chalker.

Although we’re throwing this bash in an attempt to raise money for Elizabeth, it’s also about raising awareness of Lyme. What you really need to know about it, is this: Lyme disease affects MILLIONS around the world, in every state, and on every continent. It is the fastest growing infectious disease, growing at a rate of over 39%, and is 10 times more prevalent than HIV / AIDS. It mimics, causes or contributes to more than 300 other disease and conditions and is frequently misdiagnosed as MS, Lupus, Parkinsons, ALS, Alzeimers, Arthritis, Rheumatoid Arthrits, Fibromyalgia, Chronic Fatigue Syndrome, Psychiatric Disorders, even Cancer, and much more. It can affect every single organ and system in the body, thus causing neurological, cardiac, gastrointestinal, vision, hearing, psychiatric, and many other issues. Yet people are misdiagnosed every day and left to suffer mercilessly and even die.

The State Attorney General of Connecticut launched an investigation of the IDSA Lyme Panel and determined that their guidelines for diagnosing and treating lyme are FLAWED and that panel members had conflicts of interest (IE: ties to insurance companies, pharmaceutical companies, patents, etc). They were ordered to form a new panel and to re-do the guidelines. In the meantime, doctors are operating under those flawed guidelines, denying that Chronic or Late Stage Lyme even exist and that Lyme Disease is rare and easy to treat. And doctors who are willing to become educated and administer proper treatment risk losing their licenses and other penalties. Because of politics, greed and egos, millions of lives are being destroyed. One extremely important life in particular is being destroyed…

Now, onto why this event is so personal for me and back to the caged bird reference… Seven years ago, I met a boy that would change my life, as do most significant people one comes across in this great journey. John became my best friend and soon after, much more than that. He introduced me to a world I never knew existed, whilst also introducing me to one of the most incredible friends I’ll ever have. Life only affords you so many people in life who will actually reciprocate your love for them. Through John, I found an entire family willing to do just that, but more than that, I found my Birdie, the inspiration to all of this madness, to F U Lyme, to the reasons sometimes I find it hard to be empathetic to small problems, to the reasons I only allow myself to be down for only a bit, to the reasons I see the world sometimes with TWO sets of eyes, and to the reason I feel things with TWO hearts… because even though you’re not always able to be with me, Terd, I assure you that you are with me more than you’ll ever know. And while your physical body has not allowed you to experience the world like a 23 year old should, you’ve been with me in spirit on so many occasions.

Cue music, world. Meet Teri Danielle Raser. She’s the most beautiful friend I’ve ever had; has the voice of an angel, or of the Jenny Lewises in the world; the innocent laughter of a kid’s first reaction to the tea cup ride at Disney; a heart the size of Texas, scratch that, more like that of the size of all of Africa; dance moves better than Ashlee Simpson (inside joke); and a wit about her that even Rainn Wilson couldn’t contest on his Twitter page. Aside from all of these amazing attributes, the greatest thing about Teri is that she is exactly that friend every friend wants in life, the one who treats you like you want to be treated, the one that makes you a better person just by being in her presence. This is who she’s always been to me… ever since I met her on that sweet summer day 5 years ago.

Since then, Bird & I have shared clothes, gossip, deepest-darkest secrets, belly-aching laughter, beds, concerts – live & in the car, a room for a summer, and the best of times… but most recently, we’ve shared some of the worst. In February of 2007, Teri was struck with something we spent day in and day out chasing, trying to figure out, to understand, only to be misdiagnosed for months on end until finally determining that she, my very best friend, was suffering from Lyme Disease which has since proven to be the biggest battle she, her family, and her friends have had to fight yet. (Read more of her story from her brother’s eyes here: http://gospeedraser.com/2009/02/22/under-our-skin/ & http://gospeedraser.com/causes/).

For the last 3.5 years, Bird has endured treatments after treatment, IV therapy, medication post medication post medication, and days and nights on end spent lying in bed, unable some days to even walk down the stairs for family dinner. Her symptoms match closely to those of Elizabeth’s listed above. Too physically sick to stay on her own, Teri was forced to leave Miami mid-sophomore year, at the height of her college career, dominating UM’s best blog, working for a couture fashion designer, all the while owning the Miami social scene. And now her life consists of TV shows on DVR, a very cute and large mini-Shetland look-alike pup Ziggy & his big but smaller brother Hurley, adorable cousins Liv & Iz to brighten the day, occasional phone calls or texts from friends, daily visits from Eva/Chris/John/her parents,.. and finally Grandpa Joe sessions with me when time & her health allows.

The point of all of this story-telling is simply this: if you’re in the area, I’m asking you ever so kindly to show your face at this F U Lyme event this Thursday, July 15th from 7-10 PM at The Other Bar, to bring your $5 and if you have more to spare, please do so. (http://www.facebook.com/event.php?eid=142167449131064)

If you don’t live in the area, I’m asking you to donate. Contact me about how. Contact John. Contact Mrs. Helen. If you’re in the area and can’t make it OR if you’re not in the area and can’t donate, fine, fair enough. I understand. Just let this all soak in.

For 5 minutes, think about how fragile life is; how drastically it can change in the blink of an eye or in a matter of a night in Teri’s case; how no matter how bad you might think you have it, someone else probably has it worse; how the Government needs to recognize that Lyme Disease is an epidemic… that this isn’t just a story you heard and need to prove true through Snopes.com. This is real life. And for me, it’s personal. Really personal. So take your 5 minutes, and help me raise awareness, for Elizabeth Chalker, for Teri Raser, for all Lyme victims in the world… and for all of those people in their lives affected by it.

Bird, you once told me I was never allowed to leave your life. I promise you, on everything, I’m not going anywhere. Not now, not ever. I’ll be here every day, every single day… until you can face the sunshine again. And I promise you the sun will shine again. Although I don’t understand why this happened nor do I like whatever purpose this all serves, if ever I believed someone had the strength to turn it all around, I would place bets on you. High bets, at that. And until then, I will happily grandpa joe it right beside you, making bucket lists the world will be envious of, crying when you feel compelled to do so, and laughing obnoxiously loud just when you need it.

Although your body might make you a caged bird, I hear your song and I know why you sing, and one day soon, you will find freedom again. Please know that but most of all, believe it. Believe it with all your heart, because I believe it with all of mine.

Anger And Outrage – From A Non-Lymie Perspective

// July 4th, 2010 // 6 Comments » // Guest Authors, LymeBites Blog

As I write this, I can’t help but be distracted by how lousy I feel. My head feels like it’s being held underwater. My stomach is quivering. I am absolutely exhausted. I spent most of today in bed, in a deep sleep, waking up long enough to wipe the sweat off my face and neck with the sheet, adjust the pillows and turn over to my other side. The pain started last night…first in my shoulders, then growing until I could feel burning in every single part of my body. Each individual joint in my fingers, my elbows, my toes, my legs, my knees. I wanted to scream and cry, but I didn’t have the strength or energy to. I just lay in bed, as still as I possible could, waiting for the pain to subside.

   Some of these symptoms may be all too familiar to you. The joint pain, the nausea, the fatigue, the brain fog…all common symptoms of Lyme disease. As I sit here, I am completely aware of my discomfort…but I consider myself lucky. I know what is making me sick. I am currently going through withdrawal from a commonly prescribed antidepressant. I’ve been taking the drug since October, to manage symptoms of anxiety and depression, and also to alleviate insomnia. Unfortunately, the mental health clinic which has been managing my care has recently decided to close my case. Since I am currently uninsured, I cannot afford to regularly see a psychiatrist. I owe my primary care physician a few hundred dollars at the moment, and he is not comfortable with prescribing drugs for mental health issues. I figured it would be better to try and ween myself off of the medication; to find other means of managing my anxiety, at least until I can find someone else to take my case.

   As much as it absolutely sucks to feel like this right now, I know that it will end. I have had to go off the meds cold before, when I ran out and had no money for a refill, or couldn’t get in to the doctor’s office soon enough. From those experiences, I know that full withdrawal lasts about 2 weeks. This time around, I have gradually reduced my dosage. I’m hoping that doing so will reduce my withdrawal symptoms, as well as the length of withdrawal time.

   This has me thinking, though, about a few things. I can’t imagine feeling like this most of the time. I’m struggling right now to continue writing despite the migraine growing from above my right eye. I’m frustrated that I missed spending time with my friend before he had to leave for work this afternoon, because I could not stay awake. As many of you know, it is difficult enough to be sick, without having to deal with the additional angst regarding how being ill has impacted the rest of your life, and the way that you live it.

   I’m also thinking about the health care industry. Industry. That word seriously bothers me. As if our doctors are nothing more than used car salesmen, looking to make a quick and easy sale that throws the largest profit their way.

   A few weeks ago, I was watching A&E’s “Intervention”, a show about addiction. They featured a woman named Brooke, who was addicted to painkillers. When she was 17, Brooke woke up with a rash and a high fever. Two weeks later, she woke up screaming, paralyzed with crippling joint pain. The doctors diagnosed her with Rheumatoid Arthritis, and prescribed a number of pain medications and anti-inflammatories. Her condition continued to get worse, rather than better. She enrolled in college only to have to drop out because she was so ill. She started to see a number of doctors, mixing prescriptions in order to manage her pain. Nothing seemed to work. It took Brooke two hours just to be able to move in the morning. She could barely walk. Her hands and arms twisted into claws. On top of the debilitating illness, Brooke was cut off from most of her family. Her siblings resented her for the attention that she received from their parents. There was a rift among the family members about how to best deal with Brooke’s illness and her addiction.

   It was clear to me that Brooke’s illness had been mismanaged. I figured that Rheumatoid Arthritis was a misdiagnosis. I could not comprehend why the doctors would diagnose her with RA, a syndrome with no known cause, than to consider Lyme disease…especially considering that she had the tellmark rash, fever, and joint pain. Brooke’s mother revealed that she had done her own research, and suspected that Brooke actually had Lyme disease. She took her daughter to a doctor’s office, where she tested positive for Lyme. Despite the positive test results, the doctors maintained that Brooke had been diagnosed with a condition which explained her symptoms, and that the regimen of pain medication should be continued. These medical “professionals” completely ignored the clinical test results. They refused to even acknowledge the existence of Lyme disease. They simply repeated that she had crippling Rheumatoid Arthritis.

   I was infuriated, to say the least. The addiction specialist who was brought in had to explain to the family that  Brooke’s condition was real, and that her pain was real. It wasn’t so much that she was abusing her medication to get high. Rather, she was trying to get rid of her pain using a treatment that just didn’t work. The family was riddled with guilt for the way that they had treated Brooke, because they did not understand what was really going on. Brooke was sent to a facility where she was treated for advanced Lyme disease, Rheumatoid arthritis, and addiction. While she was in treatment, the doctors had to remove parts of her shoulder and hip, which had been destroyed by the Lyme bacteria. As far as I know, her illness is still being managed.

   I am one of many who can’t help but wonder how things would have been different if she was diagnosed with Lyme disease within those first few months, following her initial symptoms. What if she had been able to find a Lyme Literate Medical Doctor when she received the positive test result? What if she had been able to receive the proper treatment?

   It’s somewhat of a moot point, because we can’t go back and change the past. We CAN, however, change the way that people view Lyme disease. We can increase awareness. We can demand more from our doctors and our politicians, to ensure that people receive the care that they need and deserve.

   It can be hard to gather up your energy when you’re sick…but somehow, we still manage to get angry. And that’s okay. That can be a very good thing. We need to get a little angry, and to demand that healthcare go from being this “industry”, which treats people as a disposable source of income, and return to the service that it was always intended to be. In the Lyme community, we’ve learned how to be resourceful. We rely on one another to find LLMDs who are willing to do what needs to be done. At the same time, we protect the identities of our LLMDs, to ensure that they remain able to practice. What else can we do to ward off the attack from those who refuse to believe that chronic Lyme exists? To demand proper care from those who view patients as interchangeable? What is it that you do to positively channel the anger and the outrage?

THOUGHTS ON VIETNAM AND LYME – ©Karen Angotti

// June 25th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog

(Written and copyrighted by Karen Angotti, printed with permission)

Vietnam. Did you wrinkle your nose and have a bad taste in your mouth when you read the word? If you came of age in the sixties and seventies, then you probably know what I mean about this most unpopular war–uh-oh I’m sorry I mean military action. My husband spent almost a year in that little spot of hell on earth. He was 8 miles from the North Vietnamese border living in a hooch which boasted two foot long rats on the inside and poisonous snake nests underneath. During the rainy season, the sheets were constantly damp and he contracted severe dysentary. His unit was the last stop on the supply line so the only pops that reached them were Frescas, all the better drinks having been snatched up before they reached Quang Tri. But all these were just minor inconveniences compared to the stark realities of war. At twenty years of age he watched friend after friend leave after breakfast and not come home for lunch. Then his turn came and he struggled to land a helicopter filled with smoke while his own flesh was burning. Only two people out of an eight man crew lived through that crash and Frank was one of them. Yes, he had third degree burns on 20 per cent of his body but he was alive. He was medi-vac-ed from Japan to Ft. Sam Houston and, with tears in his eyes, thought that he had never seen a more beautiful sight than the lights and flag of the United States of America. He soon found though that a good many people in the good old U.S.A. were not quite so happy to see him as he was to be back. Vietnam vets were derided, insulted, and even spit upon. He fought back rage while Jane Fonda made millions after sitting in a North Vietnamese anti-aircraft gun pointing it at our soldier boys, and I do mean for the most part boys. But perhaps these people were not the worst because at least they had a position. The others were harder to understand. Like the girlfriend, who wanted to know , “Oh yes, now which side are we fighting for North or South Vietnam?” The apathy was incredible. No matter what your position during the war, I am sure that you can agree with me on two things. One, it was not the soldiers’ fault that our government had entered into this war. And, two, most of the people who were protesting the war were not protesting against the ostensible, lofty reason for the war which was to prevent the spread of Communisim, but against the WAY the war was being fought. Too many lives were being spent trying to fan the flame of war rather than trying to put it out. We had the military might to have ended the war without losing American lives, but our leaders refused to take that course. Instead we had “peace with honor” which had no honor. And within a few months of the armistice, the Communists had overrun not only South Vietnam but Laos and Cambodia killing millions of people.

Now enters–the Lyme Vietnam. Our country is engaged in a war against an enemy which has invaded our borders and whose presence threatens every man, woman, and child. It is an unpopular war. And many would not call it a war, but then they are not involved in the fighting, the hand-to-hand combat, the care of the wounded. Even in the midst of the battle, the soldiers have been insulted, derided, and spit upon as if subjecting them to these hostilities will cause them to withdraw from the battle. Little do these blinded zealots realize that we were drawn into the battle kicking and screaming to be released and that we would like nothing better than to lay down our arms and quit fighting. I don’t know about you, but I would like nothing better than to trash this IV pole, the pills, the bedpan, the feeding tube, the needles, the wheelchair, and other assorted paraphenalia. Quite frankly, after more than two years of carrying bedpans and rarely being able to leave my house because my daughter requires constant care, I am more than willing to quit fighting, IF someone will just stop the Borrelia burgdorferi from their assaults and convince them to return their captured territories.

Unfortunately, this war also has its Jane Fonda, a couple of researchers who have, in essense, turned their guns on their own fellow countrymen. Using unproven rules even stricter than the code from the Geneva Convention, they have defined a very narrow range of enemy action that may precipitate a defense response. This action allows the enemy free reign in many cases much like the Geneva rules left the G.I.’s defenseless if they followed such inane rules as not shooting at a religious statue even if an enemy soldier is hiding in said religious statue and shooting at you and not entering into that demilitarized zone even if someone in there is shooting at you. Like good soldiers, we are supposed to suffer in silence, follow orders, and let the powers that be determine our fate.

Again unfortunately, this war also has ineffectual and untruthful government leaders. Leaders who are more concerned with numbers and statistics than wounded or dying soldiers. Leaders who care more about their own public image than a mere soldier’s private sorrows. Leaders who want to direct the war from the comfort and safety of a cushy, government office. Leaders who are being paid cushy, government salaries to watch us die while they waste the research funds trying to find a better ELISA (an antibody based blood test) when they would not accept the results as valid even if they had one. In a real war, one uses the best weapons not the WWII relics. If we are going to spend research dollars let’s spend it on something that has results everyone can agree upon–a reliable culture.

Let no one kid you, this is a war. And like all wars, there will be one winner, at least, in the intellectual arena. But while the battle is being fought, we patients continue to lose—jobs, homes, families, schooling, life savings, painfree days, and, for some, their very lives. The longer this war takes the more we lose. We must shorten the war by throwing all we have into the battle for in this war there can be no retreat or armistice and the next draft number picked may be your own.

What A Doctor Should Be – ©Karen Angotti

// June 10th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog, Lymenaide Awareness Campaign

(The following article is copyrighted and being used in it’s entirety with permission from the author). 

Helen Raser’s friend, Karen Angotti, is the mother of a beautiful young woman, Lisa Marie, who has been sick with lyme and co’s for about 20 years. Here is one of Karen’s many beautifully poignant pieces based on her long and difficult journey in the world of Lyme Disease. You may repost this article in its entirety only, please do not excerpt it, per Karen’s request.

WHAT A DOCTOR SHOULD BE
©Karen Angotti

A doctor should be a hero, a knight in shining armor, the sheriff in the white hat. A brave, courageous defender against wanton diseases and virulent pestilences that kill, maim, and destroy. He should be someone who doggedly pursues the enemy without a thought of retreat. Relentless and determined, he fights until the last breath is gasped and the last, faint heart beat is pumped through the struggling body of someone he may not even know. For this is his mission, to fight death and pain, to endeavor to soothe, heal, and relieve. It is a thankless task for death and suffering are as much a certainty as anything in this world. For as soon as one hideous disease demon is squashed with his seemingly pitiful weaponry, another more dreadful and fierce replaces it; and the battle begins anew.

A doctor should be someone who cares more for people than for money or prestige. A doctor who does not care is like an airborne blind pilot who cannot see the runway or read his instruments. All the knowledge in the world will not land that plane without the eyes to see. And likewise all the knowledge in the world will not cure a patient that a doctor blinded by indifference and apathy cannot see is truly ill. For a real doctor will listen to his patients with a heart of concern. He will listen to all his patients not just those who are comely of form, polished, refined, and educated. And adding that working knowledge of the patient to his book knowledge and experience, he will attempt to piece together a treatment that will work. No computer can compete with this ability. For though computers can spit out a diagnosis based on symptoms and then prescribe a standard treatment, no computer has a heart that can see and hear the patient with his own peculiarities and idiosyncracies like a real doctor can. Compassion is at the heart of that indefinable “art of medicine.” Without it, a doctor might as well be replaced by a timesaving, efficient state-of-the-art computer whose memory has less capacity for error than a frail, fallible human mind.

A doctor should be humble realizing that his craft is far from perfected. Medicine is a science that is constantly changing and growing; and the modern “discoveries” of today may soon become the obsolete “discarded failures” of tomorrow. Only a doctor who is humble enough to recognize the gaps in knowledge that exist can begin to have the kind of open mind that considers intriguing, new ideas and possibilities which may become the discoveries of tomorrow. For if one thinks he knows all there is to know, he no longer looks for answers and the three little words, “I don’t know” cannot pass through the sweilling lump of pride in his throat. Pride can construct an impassable roadblock on the path to the future.

A doctor should be someone who enters not a profession but a ministry–someone who is there to serve not to be served. People (even doctors) are not at their best when they are sick and scared. Who would not be irritated by listening to endless complaints all day long year after year? Only someone who realizes that the reason for choosing this calling was to alleviate as many of those complaints as possible. And given the impossibility of curing all of these ailments, the reward must not come totally from the lessening of complaints or the adulation of patients but from the knowledge of a service well rendered. The greatest satisfaction must come from knowing that you have done your best sometimes against seemingly impossible odds. Unraveling an intricate, diagnostic puzzle, using an innovative technique, or maybe simply holding someone’s hand and saying, “I am sorry.” These are the things that make being a doctor worthwhile. These are the intangible things that make the endless complaints, petty annoyances, and invasions of time bearable.

A doctor should be someone who is honest and trustworthy. Qualities that we often ascribe as more necessary for bankers and accountants. But which has more intrinsic value–mere money or an irreplaceable life? Trust is necessary between doctor and patient or a crucial element that may mean the difference between life and death is missing. If a doctor is saying one thing to a patient and writing another in the chart or gossiping about him with other doctors and nurses, then a sacred, unspoken trust has been broken; and the breach may impinge the entire relationship.

A doctor should be someone who is courageous and undaunted by the challenges which he most surely will face. There will always be some in every profession who are dishonest and even evil, those who will use their power for gain no matter how many or who it harms. “All it takes for evil to prevail is for good men to do nothing.” In medicine, perhaps more than any other field, it is imperative that the good men restrain the unsavory. For if they do not, who else will have the necessary knowledge or expertise to do so?

A doctor should be someone who is kind and discreet for ill-spoken words can scar
and maim as surely as a knife. And because these hidden scars are indetectable by any test or examination, they almost always cause a pemanent affliction–most notably a communication rift between doctor and patient that cannot be bridged.

A doctor should be someone who loves what he is doing so much that he would do it even if he were not paid or otherwise compensated. For in this ongoing battle between life and death, God’s most precious creation, Man, must inevitably confront his soul.

To my doctor, Edwin J. Masters, M.D., who showed me that a doctor could be what he should be.
Karen Angotti