A Twist of Lyme: Battling a Disease That "Doesn't Exist"

by Andrea H. Caesar

When she moved to Barrington, Rhode Island, Andrea Caesar was an active, happy, vivacious ten-year-old who loved to play kickball and hang from the monkey bars. A year later, Andrea had trouble catching her breath while running, was plagued by migraines, and battled constant muscle aches. Andrea had changed as a person; she was the kid who was always missing school. Although she did not know it at the time, she had contracted Borrelia burgdorferi, better known as Lyme disease. Caesar, who was finally diagnosed at age thirty-six, shares a raw and honest look inside the mind of a woman tormented by treatment in her pursuit of wellness. She chronicles her life from age eleven through her diagnosis and subsequent treatment, recalling her emotions as she struggled with Lyme, its symptoms, and multiple related infections-all while attempting to live a normal life. Driven by her determination to help others with the same affliction, Caesar provides details on what worked, what did not work, and why. A Twist of Lyme shares the captivating, heart-wrenching story of a woman's decades-long battle with Lyme disease as she is led by perseverance, courage, and hope to an eventual diagnosis and treatment.

Genres: Memoir, Nonfiction, Health, Medical

364 pages, Paperback

First published October 30, 2013

About the author

Andrea H. Caesar was born and raised in New England having ties to all six states. An avid traveler since her teenage years, Andrea has been to thirty-six countries and relishes in learning about each country's culture and language. Andrea spent a total of one and a half years in the former USSR during the end of the Cold War. In 1992 Andrea was a high school exchange student and lived in Norrköping, Sweden for a full academic year. A graduate of American University and The School for International Training (a part of the NGO World Learning), Andrea holds a B.A. in International Relations and a M.A. in Teaching English to Speakers of Other Languages. Caesar then spent several more years working in Stockholm, Sweden, until 2004 when she was forced to return to the USA due to her struggle with her undiagnosed disease.

A passionate voice for those with Lyme Disease and chronic illness, Andrea writes about her experience as a twenty-eight year victim of the disease and its related co-infections both in her book and in her blog. Undiagnosed for 26 years, since she was eleven years old, Andrea has been on the dark side of Lyme for decades. Determined to spread the word about this disease which is not recognized by the medical community in its chronic form, she hopes her book will help millions by sharing her story and her ability to muster the strength to do whatever she sets her mind to.

Andrea is a single mother to a magical All-American daughter, born in Kazakhstan. She speaks native level Swedish, fluent Spanish, and proficient Russian, along with basic knowledge of several other languages. In addition to her love for language and culture, Andrea is an active proponent of non-toxic living and proudly represents the company Ava Anderson Non-Toxic as one of the company's highest ranking founding consultants.

Reviews

[Nicole · Rating 5 out of 5]

I love that this book is real. It's a real story. It's an honest story. Andrea does an amazing job of exposing how brutal Lyme is, and how over time, it can rob its victims of an ordinary life. Thank you from the bottom of my heart for writing this book. Your honesty connected with me in such a way that lifted a weight from my shoulders. Anyone who has Lyme, has had Lyme, or knows someone who has Lyme should absolutely read this book. Lyme is real, it is merciless, and it is life altering.

As a mother who was diagnosed with Lyme shortly after the birth of my twins, I felt like every step of my own journey was re exposed by reading this book. It brought back some pretty tough memories and made me deal with the reality that my own life has been permanently altered. What a relief to hear someone talk openly and honestly about the effects of Lyme. Lyme literally shut down my life - I was unable to work, unable to care for my family, and unable to even take care of myself. Life totally changed - permanent paralysis in my face, memory loss, Lyme rage, vision loss, just to name a few. This virus is real and it is awful. But, we find the good - find out who our true friends are, make new connections, find the good in what we have. You are strong Andrea, and you are doing hard things. I can only imagine how difficult it was to put your story out there, but thank you for doing it.

[Nancy Grossman · Rating 5 out of 5]

If you are dealing with Lyme, as a patient, friend or relative of someone afflicted with Lyme, do yourself a favor and take this book home with you. The actual, day-by-day experiences of the strongest, funniest, most honest and most serious writer you’ll ever read, who contracted Lyme disease at age eleven and was diagnosed at thirty-six is easily the most important book I’ve had the privilege to edit. What she has survived, what she has learned, what she has experienced, and what she has to share, you really need to read.
- Nancy Grossman, Editor

[Connie · Rating 4 out of 5]

A Twist of Lyme is Andrea Caesar’s account of her struggle for diagnosis and treatment of a highly controversial illness. Her story begins when she is eleven years old and ends while still in treatment and trying to reach remission. It is more a story of the actual battle than it is about any final outcome or victory (though each small step in recovery is a victory in itself).

Taken mostly from her blog, the author uses a direct and intimate approach, with a voice that feels as though it’s coming from an old friend (and is often quite funny). The chapters are short enough that anyone with Lyme brain or brain fog can follow. This format also allows the [non-patient] reader to experience a real-time account of what it is like to go through the worries, horrors—and downright tortures—of this disease and its treatment. And yes, this is not always the happiest of places to be, but that is also part of the power of this book; if you feel even slight discomfort just in reading about it for a few hours or days, imagine what it is like living with this disease for months and years just trying to get to a place of remission. A potential downside to the format, however, is that the overlap of information causes a bit of redundancy at times. And, on a technical note, since the blog was (intentionally) left unaltered, there are some grammatical issues as well, but the narrative is so engaging and well-written that it really doesn’t matter.

I must especially commend the author for her courage in “baring it all” within the pages of this book. As a 30-year Lyme sufferer myself, now 3 years into treatment, there are definite moments I would not want to share with some of my closest friends, let alone the entire world. In sharing so completely, Andrea Caesar not only brings this important issue to light but will help those already suffering to feel understood and much less alone in their battle. For anyone unaware of Chronic Lyme disease, this is a wake-up call as to the daily suffering of Lyme patients, and the staggering expense of treatment.

While perhaps not all of the author’s personal views and decisions are representative of every individual within the Chronic Lyme community, her story as a whole will resonate with many. The powerful foreword by the world-renown, Dr. Jemsek—one of the doctors featured in the award-winning documentary Under Our Skin— is also not to be missed.

Many thanks to the author for this very honest, highly-readable, helpful, and important book. I wish her nothing but the best as she reaches full remission, and onward.

*Disclaimer: I received a free “early review” copy via librarything.com in exchange for my review.

[Grady · Rating 5 out of 5]

Diseases and consequences that simply ‘don’t exist’

How long can our ongoing discoveries in the medical fields of stem cell research, genetic manipulation, creation of machinery such as the Da Vinci Robotics devices that replace surgeons’ hands and concomitant touch from the organs for correction, and other hypnotic devices and avenues of research – how long can medicine advance along those speed rails and fail to foster attention to the diseases that ‘don’t exist’ – such as Borreliosis Complex (aka Lyme disease), fibromyalgia, and so many other conundrums that face near mockery? This book is a testament about how much we do not know and the desperate need for medical attention to focus on some very critical issues that continue to plague our populace in this time of scientific discovery.
Andrea H. Caesar has experienced much: she was in the former USSR during the end of the Cold War, studied in Norrköping, Sweden, is a graduate of American University and The School for International Training earning a BA in International Relations and a MA in Teaching English to Speakers of Other Languages. She has had Lyme’s Disease since age eleven and yet has endured paranoia, extreme lethargy (not unlike chronic fatigue syndrome), rages, migraines, severe myalgia, social phobias, insomnia, panic attacks, bad memory problems, sensitivity to sound, weight gain and even hallucinations, participated in long term IV antibiotic therapy, massively expensive medical bills, and often the frustration of physicians who refused to accept her diagnosis. Despite this she remains a passionate voice for those with Lyme Disease and chronic illness, and here writes in an almost blog format about her experience as a twenty-eight year victim of the disease and its related co-infections.

This is the story of a modern heroine whose willingness to share her entire life experiences to date in this immensely readable book places her in the forefront of champions of causes to bring to the public eye and the medical community the need for attention to a problem deemed ‘unreal’. It reads as well as a mystery/suspense/war story and deserves a place in the libraries of all people who have suffered or are enduring chronic illness and impending demise form untreatable illness, as well as in the hands of caring concerned readers everywhere.

Grady Harp

[Wanda Sue · Rating 5 out of 5]

My husband and I were tested for Lyme disease 3 years ago and both tests came back positive. My symptoms were never as bad as my husband, but the doctor treated us with doxycycline for 13 months, about $3 each per month! He said that he, his wife and one daughter, also a doctor, has had Lyme. He believes a simple round of doxycycline for 13 months will totally wipe out Lyme! After 13 months on doxycycline we didn’t seem to be improving, we decided to quit the meds due to side effects. Our care provider Dr Miller introduced us to Health Herbs Clinic Lyme herbal treatment. The treatment is a miracle. We are both cured as well as his family. Many doctors don't know that a few months of antibiotics simply will not kill Lyme, Going back to my farm work again gives me so much joy. I recommend healthherbsclinic Lyme herbal formula for anyone out there with same condition. visit their website healthherbsclinic .com.

[Marissa Jones · Rating 3 out of 5]

I was glad to pick up this book since I have been dealing with Lyme for many years now. The foreword from Dr. Jemsek was very good, and I have always had an interest in him after watching him featured in the film, "Under Our Skin". The book goes into depth from Andrea's beginning, through her struggles with her disease. I am glad that there is a book out that is bringing attention to the disease, but couldn't help feeling disappointed after reading it. I don't agree with some of her choices that she has made, and don't find it to be relatable to others since she does get above and beyond help from everyone around her, financially and support of her family. I am not saying her situation was easy by any means, but many Lyme sufferers don't get this, and it also doesn't show those who need to wake up about Lyme all the aspects of what it can do to your life, other than her day to day struggles. Lyme is something that needs to be heard, but I don't think her story is the one. Although it gets to the depths of it, it really sounded to me like a sad vent session. I felt better at the end though as she does leave it off on a better note. It was an easy book to get through though. It wasn't worth the money when you can buy Dr. Horowitz's new book for the same price.

[Sam Ferris · Rating 4 out of 5]

Thank you so much Andrea for writing this book. While the style did get to me a little (but was clearly explainable, having been previously a blog, and did a good job in that format) it was comforting. I joked that I wouldn't worry until my tongue turned green, and even then I wouldn't worry as I wasn't the first. It's raw and blunt at times, but also quite emotive, and gets to the nitty gritty of this disastrous illness that is Lyme. While if I read another book about Lyme I would expect it to be quite different that is because of how the illness is, not a reflection on the author.

[Jessica · Rating 4 out of 5]

I loved this book- it is very real, and makes Lyme personal. It is written like a blog, which I struggled with (hence the 3 stars). I highly recommend it to anyone who has any connection to Lyme.

[Lizzie · Rating 4 out of 5]

honest and real

[Jay]

This is a raw, emotional book written in a diary format while Caesar was undergoing intensive treatment for Lyme disease. It is, from start to finish, the story of one person's medical nightmare, and I feel enormous empathy for anyone experiencing pain like what she suffered.

I am impressed she wrote this while she was sick, rather than after. We're allowed to see all her ups and downs, sometimes hour by hour.