The
ALIEN-NATION
TM
One of the most complicated human rights concerns of modern medicine and one of the fastest growing infectious vector-borne diseases in the United States with millions of people worldwide suffering from its shapeshifting symptoms that can lead to death. IT’S TWICE AS COMMON AS BREAST CANCER AND SIX TIMES AS COMMON AS HIV/AIDS. Yet Lyme Disease is pathologically ignored by the Centers of Disease Control (CDC). In fact, 40 years after the discovery of Lyme Disease, the CDC continues to promote out-of-date and outmoded Lyme treatment guidelines (lymestats.org). Lyme Disease affects people of all ages; however, it is most common in children. According to the LivLyme Foundation, 200 children get Lyme Disease everyday, that is about 4 school buses of children a day with Lyme. The higher risks to children is due to playing outdoors, contact with pets and limited recognition of symptoms by parents and physicians.
IT CAN’T HAPPEN TO ME OR CAN IT? You may have never stepped out into the woods or rolled in the grass. You may not live on the East Coast—the only place where people are told ticks thrive. You may have never known to check yourself; you never even knew what to look for. And even if you did know what to look for, you may have missed it.
IT’S TIME FOR EVERYONE TO KNOW THE TRUTH: Lyme Disease is more than a tick bite. Lyme Disease kills, hides in nature
and inside you, doesn’t die,
and doesn’t discriminate.
Or maybe, you were bit by a tick and thought nothing of it—maybe you thought you had a really bad case of the flu. And even if you did know the signs and told your doctor your symptoms… they may not have thought to test you; they may have said, “you’re fine.” And if they do test, often times, you may be negative, as the testing is faulty, allowing you to continue suffering, never knowing the root cause of your illness. In fact, they might even say it’s psychosomatic—it’s all in your head. If you do test positive, you get a short course of Doxycycline and you’re all cured, right? WRONG.
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The
ALIEN-NATION
Genre: Documentary-style, reality mini-series for international distribution No. of episodes: 13 episodes Logline: A young spirited (yet extremely sick) millennial girl goes on a mission to inspire hope for social, political and medical recognition of Chronic Neurological Lyme Disease and for the legitimization of this illness.
Centers of Disease
Congenital Lyme
Control (CDC) says
Disease: “Lyme Borrelia
Chronic Lyme doesn’t
has been proven to pass
exist… “and can be
from mother to child
eradicated with an
both in the womb and
early short course of
through breastmilk.”
antibiotics.”
(NIH, Annals of Internal Medicine)
(lymedisease.org)
Lyme Persists: “Lyme Borrelia is capable of persistence, a new
LYME DISEASE
2017 study from Tulane
IS NO BIG
University found that
DEAL, RIGHT?
the bacteria can survive antibiotic treatment following infection.”
Testing fails: “The standard CDCapproved ELISA test picks up only 50-65% of Lyme positive patients.” International Lyme and Associated Disease Society (ILADS)
Great imitator: “Lyme disease and its co-infections mimic over 300 other diseases, including, MS, Lupus, ALS, Anxiety, Gastro diseases, Heart disease, and many more.” (Under Our Skin, lymedisease.org)
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I USED TO PLAY PRETEND — NOT ANYMORE My name’s Katie Lustig; I’m a 22-year-old girl, and my story is a little more complicated than a deadly tick bite because it started before my first bite—it is speculated by my doctors that I might have been infected with Lyme while in utero from my sick mom, on top of being repeatedly bitten by ticks throughout my childhood into early adulthood. I was diagnosed with acute Lyme Disease with the classic bulls-eye rash at age 10. My Lyme literate doctor gave me a few weeks of doxycycline, and I moved on. I got bit again at age 11 and was once again diagnosed and treated for Lyme; and then at age 12, I got infected again, but this time, by a tick with Babesiosis, one of the co-infections of Lyme Disease that travels on the deer tick. Growing up, I always felt pain in my joints, back and jaw, and struggled with learning disabilities, but this was all ‘normal’ for me. I thought it was ‘normal’ to feel like crap 24/7 with chills and body aches, so I played along, acting like your average happy kid.
Katie, age 10, healthy and happy
WHEN LYME REALITY SET IN I’ve been a writer and an actress pretty much my whole life, ‘simply acting’ like I felt okay. But when my Chronic Lyme Journey began around age 20, this disease became so real and all-consuming that it was impossible to keep hiding and ‘playing pretend.’
CASCADE OF EVENTS
Katie, age 22, having seizures
My brain began to feel like it was exploding because of the recurrent infections and viruses attacking my immune system, eventually causing numerous chronic neurological symptoms, like seizures, tremors, acquired Tourette’s, short-term memory loss, speech impairment, ‘mini stroke’ like episodes, and general loss of motor function—just to name a few.
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FAST-FORWARD TWO YEARS TO 2018 I’m still seriously sick and getting worse. I never thought it was possible to actually be afraid—not only of the world around me, but the possibility I could die from a disease the government claims ‘fake.’ Most recently, this illness brought me to what I thought was ‘death’s door.’ On October 22, 2018, I was at home in bed just doing my daily infusion, when I started to have a seizure and I could hardly breathe. My mom tried to do all the things she does when I have seizures, but nothing worked. She called 911 for the first time. When the paramedics came, they couldn’t even move me out of my mom’s bed until I was stable enough to be transported. This was my first ambulance ride—the first time being strapped in a chair to be lifted down the stairs.
Katie during a recent hospital stay
Deer tick, common on the East Coast
I was taken to Yale New Haven Hospital (a hospital I avoided at all costs due to the STRONG stigma there that Chronic Lyme isn’t ‘real’) where I spent five days connected to wires, oxygen tubes and an IV drip in my port. I could barely even get up to go to the bathroom even with the support of two nurses, my mom and a walker. I was crashing, convulsing, barely breathing, unable to walk on my own and almost had a heart attack. I felt like I had nothing left in me to give; they were taking so much blood and I was truly near death… but I survived because I wasn’t meant to leave this earth—my purpose is to share this story with you and the rest of the world, so that everyone will know the truth. Lyme IS real, it’s a big deal—and yes it CAN kill you.
(Please see Appendix for Katie’s Complete Story)
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WARRIORS IN ALL OF US
But this story is not about me, Katie, or how this illness has affected my family; it’s about ALL of us—it’s a human rights fight!
That’s why I’d rather call myself a ‘Warrior’ than a sick kid. If I weren’t a ‘Warrior,’ I could be doing a lot of other low-key things rather than working on bringing this true horror story to light. And I’m no stronger than any of the millions of other fighters out there just because I’m not afraid to share my convulsing body and my scared-up face. Sharing the hidden truth about Chronic Neurological Lyme Disease is simply a way for me to stay positive through the hope to find a path to a cure and to show humanity why Lyme Disease is more than just a tick bite and it’s even more than a global pandemic, it’s a human rights problem.
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TOGETHER WE ACHIEVE MORE The only way to reveal and conquer Lyme—an ultimately, the human rights concern—is if we do it TOGETHER. When I got introduced to Emmy award-winning director/producer Will Harper and his team at The Global Touch Group (GTG), an international company who champions human rights concerns, I knew it was fate stepping in. GTG has helped multiple non-profit foundations rooted in science and education to raise awareness to further their missions on a global scale and have worked with human rights icons, such as Nelson Mandela, Archbishop Desmond Tutu, Oprah Winfrey, Ambassador Andrew Young and Congressman John Lewis. We also joined forces with Dr. Eva Sapi, an internationally recognized expert in Lyme Disease research who was the first to discover the presence of Borrelia biofilm in human infected skin tissue, a finding that was published in the “European Journal of Microbiology & Immunology.”
“Together we achieve more”
Diana from The Global Touch Group visiting Katie in the hospital
This is a time-sensitive matter and the Lyme community needs a group of fighters on our side to start the next movement of the 21st century— but we can’t do it alone; we need you to help us all fight back.
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OUR MISSION The goal of The Alien-Nation™, a documentary-style reality miniseries, is to tackle an even larger problem: a human rights fight— to raise global awareness far beyond the current Lyme community that inspires hope for social, political and medical recognition of Chronic Neurological Lyme Disease; propagate fundraising to advance much needed research to find a path for a cure; and for the legitimization of this illness. While there have been programs on Lyme, these prior programs/ documentaries on the illness have had little impact outside of the Lyme community. They provided good education but didn’t engage for action. Recent mainstream media has even played off the fact that Lyme Disease is “controversial,” painting patients in a false light— when what society really needs is the truth to save not just those affected, but those who could potentially become affected by Lyme.
The Lyme Community fights for legitimization of this lillness
SERIES CONCEPT The series is told through the millennial eye—Katie Lustig—a 22-yearold writer and marketing-communication, honors student at Emerson College in Boston who is living with Chronic Neurological Lyme Disease. She will share her heart-wrenching personal journey while exposing the hidden truth about this deadly disease that knows NO BOUNDARIES. She’ll achieve this through telling not only her story, but by conducting eye-opening interviews with other unexpected people with Lyme and sharing their humbling journeys, including celebrities, who thought this couldn’t happen to them and revealing the damage it has done to their bodies, minds and soul; and the incredible scientists and doctors at the forefront working to combat this disease.
Katie, the series narrator
The series is designed to reach the audience outside of the Lyme community—those who either know nothing of the illness and/or think it’s “no big deal.” The combination of creative storytelling and binge watching (Netflix, Amazon Prime, etc.) TV culture will both shock and amaze people, while exposing the truth about this highly complex disease that makes its victims ultimately feel alienated from society. To achieve this, our goal is to join forces with a group of people and organizations, so we can create the pilot episode of the series; a series that will be life changing and eye-opening for millions, and one where we ALL can be proud to have brought this series to light.
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PARTICIPANTS Celebrities with Lyme Disease we intend to include: • • • • • • •
Yolanda Hadid Bella Hadid Anwar Hadid Avril Lavigne Ally Hilfiger Shania Twain Ben Stiller
• • • • • • •
Ashley Olsen Jesse Ruben Amy Tan Parker Posey Debbie Gibson David Lettermen Alice Walker
• • • •
Rebecca Wells Darryl Hall George W. Bush Rob Thomas’s wife Marisol Maldonado
Doctors and Researchers: • • • • • • • • •
Dr. Eva Sapi (Ph.D.) - Researcher and professor of cellular and molecular biology at the University of New Haven, Ct., and the first to discover breakthrough research in the field of Lyme Disease with Borrelia burgdorferi in human tissue Dr. Elena Frid - Neurologist and Neurophysiologist focusing on infectious induced autoimmune disease Dr. Richard Horowitz - Internist treating Lyme patients and author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” Dr. Charles Ray Jones - World’s leading pediatric Lyme Disease specialist Dr. Amiram Katz - Neurologist who treats Lyme Disease Dr. Bill Rawls (OB/GYN) - Author of “Unlocking Lyme” (also has Chronic Lyme) Dr. Susan Hall (Vet) - Specializes in small animal internal medicine and surgery Dr. Katherine Lantsman - Internal Medicine (chronic illness and overall health), passionate about functional medicine and nutrition Mary Beth Pfeiffer - Author “Lyme: The First Epidemic of Climate Change,” published April 2018
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PARTICIPANTS CONTINUED Lyme Patients (and individuals affected by the issue): • • • • • • • • • • • • • • • • • •
Susan Lustig - Katie’s mom, who’s been battling Chronic Lyme Disease for 22 plus years Emily Levy - CEO and co-founder of Mighty Well; also suffers from Chronic Lyme (24 years old) Betsy Covey - Young adult with Chronic Lyme Dan Lenon - Young adult with Chronic Lyme Christina Womble - Young adult with Chronic Lyme Judy Rossiter - Battling Chronic Lyme disease Olivia Chiacchia - Young adult with Chronic Lyme Brooke Stoddard - Young adult with Chronic Lyme Jasmine Szantyr - Young adult with Chronic Lyme Brandon Rathbun - Young adult with Chronic Lyme Hannah Lustig - Actress (little Katie), Katie’s cousin Kim Lustig - Katie’s older sister Neal Lustig - Katie’s Dad Susannah Murphy - Katie’s nurse Sarah Carlson - Katie’s childhood best friend Bridget Kolf - Katie’s childhood best friend Taylor Thompson - Katie’s childhood best friend Dan Wolf (“Tick Man Dan”) - president and founder of TickEase, Inc.
Recurring contributors: • •
Laura Esquer - Presentation Designer and Art Director Lauren Goldenberg - Writer with Credits on “Gossip Girl,” “The Good Wife,” and “Chuck”
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BRIEF OVERVIEW OF EPISODES OF THE ALIEN-NATION This series leads with the narrative of Katie’s story with documentary-style segments about her childhood (growing up with Lyme woven throughout each episode organically). She is on a mission to help people with Lyme Disease (and ALL people no matter what they may be going through) feel like they have a purpose, while showing viewers the truth about this mysteriously, hidden, complex disease that can touch anyone, no matter their socio-economic status, ethnicity, geographic location, sexual orientation and gender, making its victims ultimately feel alienated from society.
Katie and Hannah Lustig who will play “little Katie”
Katie’s journey mirrors the journey of so many others with Lyme. She exposes the raw truth, even if there are moments that challenge viewers. During the filming process nobody is to interfere should she have a seizure, including uncontrollable body movements, confusion, speech impairment, ministoke episodes, etc.; nor is anyone allowed to stop filming unless discussed prior. If a medical situation becomes dire, Katie’s mom will be on the scene to intervene, as she is well aware of how to respond in these situations (these intense moments will also be recorded and revealed).
Katie and her mother, Susan
Throughout the series, Katie, will interview patients, celebrity-patients, friends, family members, doctors, scientists and researchers—which will be aligned with each of the topics (i.e. social, psychological, medical, political, etc. ) in each episode depending on each person’s insight on the problem. Such intended people to feature will be decided on as the story unfolds along with the running thread of Katie’s Lyme life, which will serve as a guide to enlighten the public about this pandemic and the mystery and confusion surrounding Lyme.
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BRIEF OVERVIEW OF EPISODES OF THE ALIEN-NATION EPISODE 1 | Why we’re not crazy! Tackling the main problem that Chronic Neurological Lyme is not considered a ‘real’ disease according to the CDC; leading to the problem where a community of suffering people are mistreated, disbelieved, and alienated by friends, family, and the medical system. Focus on social alienation and loss of friends, family, and identity. EPISODE 2 | Lyme persists antibiotics; testing fails; misdiagnosis, psychological, and physical suffering (from trauma as well as biologically induced psychological symptoms). EPISODE 3 | Rapidly growing biggest boom of infectious disease; easy transmission; lack of awareness on MULTIPLE ways to catch it (not just ticks, spiders, flees, mosquitos, congenital) and demystifying the scientific ‘myths’ outdated from CDC guidelines; physical suffering. EPISODE 4 | Great imitator; stats and stories on misdiagnosis and symptoms mimicking other diseases/disorders; etiological basis for disorders. EPISODE 5 | Paying out-of-pocket; ‘codes’ for insurance coverage; robing families and patients of finances; proper treatment ultimately comes down to a patient’s resources; people who have to self-treat; managing the Lyme system. EPISODE 6 | The truth about ticks—transmission time, prevention, spirochetes, and biofilm; co-infections.
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BRIEF OVERVIEW OF EPISODES OF THE ALIEN-NATION CONTINUED EPISODE 7 | The crisis with animals and Lyme Disease; burden on your pets; exposure from your dogs, cats and other animals. EPISODE 8 | Lyme suicide, deaths and tragic symptom induced deaths; burden on patient and loved ones. EPISODE 9 | Gender and Lyme—same physical symptoms; similar stories at core; but social aspect is different. EPISODE 10 | Climate change; global warming; ticks and Lyme Disease. EPISODE 11 | Attack on Lyme Doctors; what they must do to protect themselves to treat patients; potential to lose license or even be arrested. EPISODE 12 | Our war with the CDC and IDSA—governmental policies and our petitions to change them that are being ignored. EPISODE 13 | Reaching pandemic levels and still ignored— worldwide human rights concern.
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EXECUTIVE TEAM KATIE LUSTIG
CO-CREATOR, WRITER AND NARRATOR Katie Lustig, a Connecticut native, is a 22-year-old creative storyteller and honor student, currently (on a leave of absence) in her senior year at Emerson College studying marketing-communications and minoring in writing. She has been a natural writer, poet, and actress since a very young age. Throughout college, she has explored and expanded her skills in non-fiction/fiction writing, poetry, advertising, copywriting, and brand strategy. Katie has always been a lover of nature and animals—the kind of girl that played imaginative games in the woods and went to camp every summer. During her freshman and sophomore year at Emerson, she interned with the Jewish Vocational Services in Boston as a marketing assistant. She later interned with Mighty Well, a Boston based startup, wellness-wear apparel company for two semesters as their online community manager— with responsibilities including blogging, editing, social-media campaigning, and patient-outreach. Today, she is battling Chronic Neurological Lyme Disease with an undefeatable desire to ignite a movement to shine light on the fastest growing human rights pandemic affecting millions of people worldwide.
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WILL HARPER
CO-CREATOR, DIRECTOR, CEO OF THE GLOBALTOUCH GROUP (GTG) Will Harper is an award-winning international producer and director who has worked for Oprah, Clint Eastwood, Good Morning America, Entertainment Tonight, Nelson Mandela, Bishop Tutu, MTV Network, Warner Bros, ESPN and ad agencies, such as Ogilvy and Mathers and Leo Burnett. He designed the campaign for the Foundation for the “Study of Highly Sensitive Persons” and directed the documentary Sensitive-The Untold Story, featuring Alanis Morissette.
In nationwide search, Will was selected by Harpo, Inc to become the lead field director for the Oprah Daytime Show. He produced a marketing campaign for Universal Studio/MCA in Hollywood that was instrumental in acquisition of Universal Studios by Seagram. He directed Lenny Kravitz’s first documentary for VH-1’s “Behind the Music,” which was one of BTM’s longest running shows and increased Lenny Kravitz’s market share by 20%. Will was the executive producer for 2006 Trumpet Awards and worked closely with civil rights leaders, including Nelson Mandela, Desmond Tutu, and Ambassador Andrew Young. Will recently executive produced and directed a 13-part environmental broadcast series entitled GDiaries for ABS-CBN Network–the largest multi-media conglomerate in Southeast Asia with international reach. The show has garnered four awards to date. In 2018, Will was appointed vice dean at ABSCBN University in Manila, Philippines where he is designing curriculum for the film department and creating practical studio and field proficiencies for network employees to enhance their current production status.
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DIANA SINELNIKOVA
EXECUTIVE PRODUCER, PRESIDENT OF THE GLOBALTOUCH GROUP (GTG) Diana Sinelnikova is the quintessential combination of a forward thinker, film producer and brand strategist. Her far-reaching talent to research and implement strategies has been responsible for the success of many branding campaigns. Companies that have benefitted from her tenacity and arduous accomplishments include: DuPont, SOS California, Clouds Rest Vineyards, The Trumpet Awards and Artist Group International. Diana has worked with several nonprofit foundations rooted in science and education to promote their goal on a global scale: Foundation for the Study of Highly Sensitive Persons, Pioneers in Education (alliance of NASA, U.S. Army, ExxonMobil, DuPont and Pioneer Hi-Bred), SOS California and The National Museum of U.S. Army. Diana’s latest feature documentary Sensitive-The Untold Story, based on the findings of the bestselling author-psychologist Dr. Elaine Aron (The Highly Sensitive Person) and featuring Alanis Morissette has been released in nine languages in 64 countries and 3,000 universities. Aside from producing the feature documentary, Diana oversaw and strategized fundraising, social media campaign and distribution of the film. The film was created for the Foundation for the Study of Highly Sensitive Persons with a purpose to raise awareness about the trait of highly sensitivity people around the globe. Diana’s affiliations with international production companies, talent agencies, and film commissions, along with her fluency in several languages and her understanding of international culture have made GTG one of the most sought after branding and content development agencies in the world. Film campaigns Diana produced with GTG’s director Will Harper helped multiple contemporary fine artists become top sellers on Princess and Disney cruises. The GlobalTouch Group, Inc. conceptualized, designed and produced Behind The Artist television specials on contemporary fine artists for closed circuit programming on Princess Cruises.
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MARIA GRIMARDI
EXECUTIVE PRODUCER AND MARKETING EXECUTIVE Maria Grimardi, a passionate Marketing professional, offers 30 years of experience across a full range of marketing disciplines in travel, hospitality, finance, telecommunication, health/fitness, and education. Maria currently holds the position of the Director of Marketing, Creative and Content Strategy, at AmaWaterways River Cruises since September 2016. Key responsibilities include creating lead generation, nurturing, acquisition, and retention strategies; and spearheading the content and creative strategy to deliver new visual assets, including videography and photography, to tell the AmaWaterways’ story, as well as create 3D-renderings and 3D-animation for company’s groundbreaking new ship. Prior to AmaWaterways, Maria worked as the Vice President of Global Marketing at Uniworld Boutique River Cruises for eleven years, combining creative vision with strategic thinking to produce high impact B2B and B2C programs focused on revenue growth, profit, acquisition, retention and brand awareness. During her tenure at Uniworld, she oversaw the complete rebranding of the company globally, and overhauled all visual and video assets, ensuring Uniworld’s brand aligned with luxury. Maria managed all annual video and photo shoots, including hiring photographers, cinematographers, talent, etc.; handling all logistics; and final product delivery. Within six months, produced ten videos, including the first LGBT travel video in cruising and Uniworld’s first App using Virtual Reality and Oculus Rift technology. She executive produced with The Global Touch Group a culinary travel show on the rivers, “Dining with Darling,” which aired on Cooking Channel. Prior to joining the Uniworld team in 2005, she worked with Princess Cruises as a consultant, a Senior Marketing Manager for VISA USA, and as an Advertising Manager for Verizon Wireless, Northern California. Maria holds a Bachelor of Arts Degree in History from the University of California, Los Angeles, and Master of Arts Degree in English from the California State University, Sacramento.
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DR. EVA SAPI PH.D.
RESEARCHER AND PROFESSOR OF CELLULAR AND MOLECULAR BIOLOGY Dr. Sapi received her Ph.D. in Genetics from the University of Eotvos Lorand, Budapest, Hungary, and Postdoctoral training at Yale University, School of Medicine, Department of Therapeutic Radiology. She is a Professor at the University of New Haven, Connecticut, where she teaches undergraduate and graduate level biology courses and carries out the University’s Lyme Disease Research Program with her students. To date, over 90 graduate students have received training in Lyme Disease related research. Dr. Sapi is on the front lines of searching for a cure for a disease that the Centers for Disease Control says is the fastest-growing vector-borne disease in the United States. She was the first to discover breakthrough research on the presence of Borrelia biofilm in human infected skin tissue, a finding that was published in the “European Journal of Microbiology & Immunology,” an international peer-reviewed online journal, representing one of her 50 peer-reviewed scientific papers on Lyme disease. Dr. Sapi’s current research, with James Goldman, a Columbia University professor of pathology and cell biology, centers on a case in which a woman received 16 years of antibiotic therapy and still died from Lyme disease. Their findings – presented in International conferences and the manuscript under preparation – supported her earlier discoveries that Borrelia can form biofilm, a protective layer around itself, making it extremely resistant to antibiotics. Dr. Sapi and her students are continuing to study a recent breakthrough in which they found that liquid, whole-leaf stevia extract — not the powdered varieties that people most commonly use — have reduced the biofilm mass by about 40 percent. The goal of her research is to ultimately identify novel antibacterial agents that are effective in killing all forms of Borrelia. Recognized by Massachusetts General/Harvard Medical School for her Lyme Disease research, Dr. Sapi was named a research trailblazer by LymeDisease.org in 2018. She’s shared her findings at conferences around the country and organized seven Lyme Disease Symposiums at the University of New Haven, which regularly draws 200 participants, and she has received the Lyme Connection of Ridgefield’s Courage Award. Dr. Sapi’s initial research focused on breast and ovarian cancer. She shifted her focus to finding a better treatment for Lyme Disease after contracting the disease herself.
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APPENDIX: KATIE’S FULL STORY There’s more to the story than meets the eye
“I was 9 years old when I first discovered that my mom was sick with Chronic Lyme— but for some reason, no one believed her or really understood her suffering. As my mom became more ill, wasting away, losing the ability to speak and form coherent thoughts, losing her job, and simply lacking the ability to keep up with the energy of her two theatrical daughters—I saw the darkness in her eyes, a lack of light that I hoped to re-ignite. Every day after school, I’d get off the bus and rush upstairs to her bed, where we’d hang out in PJs. Sometimes, I would pick at her brain to attempt to understand why she was always in bed, why doctors thought it was ‘all in her head,’ and why friends and family thought she was a lazy complainer. But out of all my questions, the biggest and most important of them all were—Why isn’t anyone doing anything about this? Why aren’t YOU doing anything about this?”
Katie with her sister, Kim and mother, Susan
Little Katie at camp
She’d reply in the easiest way she could, reminding me that no one could do anything about the problem right now because of a few reasons: 1) The government won’t let anyone change the testing and treatment guidelines to fit modern research; 2) The science itself is extremely hard to comprehend, even for some of the most intelligent doctors or researchers; 3) We don’t look sick, and sadly 4) Since many of our friends and family don’t know the truth about Chronic Neurological Lyme Disease, they don’t believe us either, which makes everything so much more complicated; after all, aren’t our most beloved family and friends supposed to be by our sides no matter what?
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An ostracized “other”
As I grew up, I watched my mom lose all her friends; she isolated herself, becoming an ostracized ‘other,’ an alien of society who would never be accepted, at least not at the time. She rarely wanted to go to the movies or go out to eat with my family, so I’d stay home with her a lot, partially because I was a homebody, but also because I didn’t want my mom to feel alienated—I didn’t want her to give up or lose her reason to live. How is it legally humane to withhold life-saving treatment from ill patients who have lost all faith in the healthcare system and humanity as a whole? And how is it so easy to give up the fight and let your brain and body wither away into dust—becoming even smaller than the tiny creature that bit you?
Susan during one of her many hospital stays
I’d later realize that it was because my mom felt hopeless, like the rest of us, nor did she have the energy to combat the forces around her, preventing her from living as an accepted member of society. There was nothing she could do to change the world’s perspective. So, mom resorted to moving on, because she had two little girls who really needed her, and it was her only way of finding some sort of relatively ‘normal’ happy life amidst all the madness around her and inside herself.
Katie and her dog Serena, who also has Lyme
However, you see, there are people trying to change perspectives, but our voices are not being heard, our faces unseen, and our bodies alienated. This means we need to speak louder than every sound in the universe to show humanity why Lyme Disease is more than just a tick bite and it’s even more than a global pandemic, it’s a human rights problem that does not discriminate. Every one of us is a host, which is only one reason why we should all pay attention and believe in things we can’t see.
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My name’s Katie Lustig and my story is a little more complicated than a simple, yet deadly tick bite, because it started before my first bite—I was infected with Lyme while in utero from my sick mom, and then was repeatedly bitten by ticks throughout my childhood into early adulthood. At age 10, I was diagnosed with acute Lyme Disease with the classic bulls-eye rash. My Lyme literate doctor gave me a few weeks of doxycycline, and I moved on. I got bit again at age 11 and was once again diagnosed and treated for Lyme; and then at age 12, I got infected again, but this time, by a tick with Babesiosis, one of the co-infections of Lyme Disease that travels on the deer tick.
“When I was just a little girl I asked my mother what will I be? Will I be pretty? Will I be rich? Here’s what she said to me: que sera, sera whatever will be will be. The future is not ours to see, que sera, sera what will be, will be.”
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Growing up, I always felt pain in my joints, back and jaw, and I struggled with learning disabilities, but this was all ‘normal’ for me. I thought it was ‘normal’ to feel like crap 24/7 with chills and body aches. I thought it was ‘normal’ to take 3 times as long to read a book as my friends. So, I just kept going, eventually becoming a lifeguard around age 15 for the next 4 years.
Katie as a lifeguard
Katie wearing mask to prevent allergic immune response
Around age 20, I started rapidly declining and we didn’t know why. My mom took me to her Lyme literate neurologist because we didn’t know what to do and most of the healthcare system simply couldn’t think ‘outside of the box’ with what was going on in my body. We had no answers and no help at the time. No form of treatment could have prevented me from my fate— the loss of my body that continues to disintegrate.
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When I first got diagnosed—I thought shit...
I just got diagnosed with a fake disease that my mom has and now my friends and family are going to think we’re both crazy! I didn’t want to accept the diagnosis, so I threw myself down the rabbit hole of a healthcare system to try to find some diagnosis that wouldn’t be Chronic Lyme.
Katie during one of many hospital stays
Katie receiving treatment
Living with a fake disease
Eventually, we got to the point where I simply had no ‘real’ disease—all I had was simple little fake Chronic Lyme, like my Mom. Even when hiding my diagnosis at a prestigious hospital, I was still harassed and belittled for my smile being ‘too big’ and my attitude ‘too positive.’ I started getting angry and I wanted the world to know this disease is very, very real and we should all be afraid. Especially looking at what happened to my mom and how she lost all her friends; I swore to myself to never lose my friends. The thought alone terrified me. I held on to some of them about a year after my diagnosis—trying to convince them of my pain, to believe me, as well the legitimacy of my disease... but things didn’t go as planned, (another story to share later).
The Alien-Nation The Alien-Nation | | 22 22 TM
My hope
If I can do one small thing to advance the legitimization of this illness, find a path to a cure, and to stop all the suffering and alienation, I want to use every drop of energy in my power to do it.
I am the master of my fate and the captain of my destiny. – Nelson Mandela
There IS a light in the darkness, but I can’t do it alone; we can’t do it alone... which is why we ALL need to fight together.
©2018 The Alien-Nation
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