Andrea H. Caesar - A Twist of Lyme: Battling a Disease That Doesn’t Exist

Battling a
Disease That
Doesnt Exist

ANDREA H. CAESAR

Foreword by Joseph G. Jemsek, MD, FACP

Edited by Nancy Grossman

Copyright 2013 Andrea H. Caesar.

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ISBN: 978-1-4808-0264-3 (sc)

ISBN: 978-1-4808-0266-7 (hc)

ISBN: 978-1-4808-0265-0 (e)

Library of Congress Control Number: 2013918126

Archway Publishing rev. date: 10/29/2013

Contents

I dedicate this book to my daughter, Anelya. You are the reason I get up in the morning. You are the reason I fight to be well. You are, quite simply, a spectacularly magical little creature and I am blessed to be your mommy.

I have an endless list of people to thank for so many different reasons, but that would be a book in itself. I have to start by thanking my parents, Porter and Susan Caesar, for their endless support of every aspect of this journey. You have stepped in as temporary parents to my daughter whenever duty called and have been selfless and a crucial part of my survival of treatment. I have no words to thank you enough.

My lifes journey would have been incomplete without the love of my grandparents Edward and Mary Lou ORourke, and Allison Caesar who learned to understand this baffling illness that has infested every part of my body. Thank you for being so open-minded and loving through it all. I am fortunate to thank the rest of my family for also being there for me, calling me, and sending me cards, as I fight for my life.

I thank Dr. Steve Clark, ND , for finally diagnosing me and sticking with me through the seven years of testing it took us to find out what was really happening to me. I also thank you for putting up with me as my boss for those seven trying years.

To my sidekick and the best assistant I could ever ask for, Michaeleen Sicard, who always lights up a room no matter what the situation and always knows how to cheer me up. For knowing where everything is at all times and taking on Mini at the drop of a hat, you have been a savior. Thank you for being a part of our family.

To all of my friends who have cooked for me, sent gift certificates for my juice cleanses, dropped everything to stay with me for a weekend, and so on, thank you. I could not ask for better friends. This includes all of the incredible messages of hope and encouragement I have received from my friends around the world: Sweden, Russia, Cameroon, Colombia, Germany, Switzerland, Slovakia, Japan, and more. Thank you for the strength your words offered me.

I would like to thank my friend of twenty-five years, Leah Palmisciano, not only for being a loyal and devoted friend, but for introducing me to a career that would save my financial life when I needed it most and for introducing me to Omar Benavides, an unexpected light at the end of a very dark tunnel. Omar, I will forever be grateful to you for opening my eyes and heart to the option of allowing myself to be truly happy again.

I want to thank my dear friends, Ava, Kim, and Frohman Anderson. You have provided me the freedom to earn a substantial income from home while in treatment. Our relationship now stems far beyond business and I am proud to call you dear friends. Thank you for what you have done for my family. You have forever changed our lives.

Dr. Joseph G. Jemsek, MD , I believe with all of my heart that you not only saved my quality of life, but my life itself. As you said many times, had the wind blown in the wrong direction I could have found myself immobilized, unable to speak, or in many other debilitating conditions. I thank you for sparing me that hell. I believe that you are a crusader for the helpless, for those who cannot find help in a broken medical system. Your cutting-edge willingness to go against the system approach has spared the pain of many people. Thank you for your bravery and your heart of gold. And I thank you especially for supporting me in sharing my story, by writing the Foreword to this book.

By Dr. Joseph G. Jemsek, MD , FACP

The Lie Too Big to Confess

The person attempting to travel two roads at once will get nowhere.

Xun Zi, Chinese philosopher in the Confucius era

When life brings change we, the human species, adapt to that change if the change threatens our survival or, perhaps as a lesser challenge, threatens the quality or comfort of our lives. We adapt by modifying our behavior, we invent or evolve new coping skills, we make concessions and we often compromise and move on we adjust, we adapt, and we cope. The human species is arguably the most adaptable species to ever have inhabited planet Earth, other than the cockroach.

Andrea Caesar writes about an abiding affliction she has endured and continues to endure. This affliction is Borreliosis Complex , or Lyme Borreliosis Complex , which represents a complex set of infections involving all of the body systems, but in particular the nervous system and its most primitive and basic functions. Andrea writes about her affliction in real-time in her blog format, adapted into this book, and so this is not a story of challenge and triumph, but a story of a disease which so distorts human experience that self may become unrecognizable to the patient afflicted, and certainly to those who love and support this person.

In the scope of chronic illness, this is very dangerous territory, indeed; and Andrea reflects such during her treatment, especially in the early portions that are marred by a severe disconnect from normal life. When we become unrecognizable to ourselves and others, what have we become? Who will believe we are suffering, when the suffering is oftentimes questioned by the medical community or family and friends? The conundrum is complicated by the prevailing opinion in the medical community that Andreas disease does not exist. This struggle with reality and the surrounding confusion and frustration are all on full display in Andreas journalistic diary in her quest for wellness.