On Saturday, April 11, Midcoast Lyme Disease Support & Education will host its sixth annual conference at the Augusta Civic Center and, as always, admission is free — free for patients who are seeking to connect with resources that will project them towards health and wellness, free for caregivers to learn more about support resources, free for medical providers who want to learn more about diagnosing and treating Lyme and tick-borne disease, free to the general public who want to learn more about prevention, what the state of Maine is doing about our tick problem, and changes that will be taken place at a federal level.
World-renowned expert speakers and exhibitors, eager to share their knowledge, their experiences, and their products and services. A full day from 8 a.m. to 5 p.m., with doors opening at 7 a.m. for registration; there is no advance registration. We are prepared to seat 1,500.
This year, we’re excited to offer free physician training for medical providers who want to learn more about diagnosing and treating the tick-borne diseases presenting in their patients. This is peer-to-peer training (doctor-to-doctor) from world-renowned experts in the field of tick-borne disease presenting how complicated it can be to not only diagnose but to treat and recognize co-infections.
Our conference theme this year is “Know Better, Do Better” and it’s taken from one of my favorite inspirational authors and speakers, Maya Angelou. As Oprah Winfrey pointed out, 20/20 means perfect vision, and this is the year we are choosing to identify and remove roadblocks that restrict a patient’s access to care. With clear and perfect vision, with more education, and with more available resources, medical providers can do better. Their questions and concerns can be addressed with real science and they can be armed with newer, better diagnostic tools and resources for their patients.
Our vendor section each year is filled with over 100 community partners and exhibitors, like-minded individuals, businesses, and organizations that offer products and services to better the lives of patients and the public at large. What if you could listen to the latest cutting-edge treatment, research, and trials? What if you could sample some of the modalities that you only hear or read about? What if you could bring your paperwork and talk to the labs who processed your blood so that you could better understand what you have? Well, you can, and you can do it for free.
How about a quick peek at some of our speakers?
Holiday and Olivia Goodreau
Bitten by a tick at age 6, Olivia Goodreau was seen and misdiagnosed by over 50 medical providers before receiving her proper diagnosis in 2013. With a slow recovery, Olivia was adamant that something must be done, that a cure must be found, and so at age 15, Olivia has raised more than $1 million to help scientists find a cure and assist families to pay for their Lyme disease treatments. She and her mother, Holiday, founded the LivLyme Foundation. In addition to providing financial assistance to families of children suffering from Lyme disease, the LivLyme Foundation funds studies for Lyme and tick-borne diseases research, providing grants to scientists with research projects focused on better testing, improved treatments, and finding a cure for Lyme disease. Another part of the LivLyme mission is to deliver tick education and awareness around the globe. Together, Holiday and Olivia developed a free mobile application called TickTracker as an educational tool for identifying and combating tick-borne infections and diseases in real time using their geographical location to keep others aware. The app also uses game-based learning to educate users about tick identification, prevention, and safety.
Retired U.S. Air Force Col. Nichole Malachowski
Col. Nicole Malachowski medically retired from the U.S. Air Force as a colonel after 21 years of service as a career fighter pilot. She was the first woman in history to fly with the Thunderbirds (U.S. Air Force demonstration squadron) and went on to be the commander of the 333rd Fighter Squadron, where she trained more than 200 students to fly the F-15E fighter jet. She later served as the deputy director for U.S. Air Force readiness and training for the Office of the Under Secretary of Defense for Personnel and Readiness. In addition, she served in the White House: first, as a fellow for the U.S. General Services Administration (2008-2009), then as the executive director of the White House “Joining Forces” Initiative (2015-2016).
Malachowski was at the peak of a long and promising career. Her medical retirement, however, was premature. At only 43 years old, she was deemed unfit for duty due to neurological damage from tick-borne illness. She began experiencing numerous symptoms, including intractable pain, insurmountable fatigue, cognitive dysfunction, and speech impairment, which would progress over the next four years to include disorientation, confusion, anxiety, and temporary paralysis. These symptoms significantly impaired her ability to serve her country in the U.S. Air Force, as well as her ability to provide for her children, and she became dependent upon her husband as a caregiver.
Despite access to both military and civilian physicians, identifying the root cause of these symptoms was exceedingly difficult and prolonged. Her concerns were initially dismissed as originating from being overstressed; however, the symptoms persisted. In the end, it took over 4 years, 24-plus doctors, and multiple misdiagnoses before she was accurately diagnosed. After receiving an accurate diagnosis and available treatment, she was able to regain the abilities to stand, read, and speak. While she still deals with lingering symptoms, she now has a quality of life worth living and is again independent.
Malachowski is, unfortunately, a very real example of the shortcomings in both the civilian and military medical systems regarding tick-borne illness. As well as a concern for public health, tick-borne illness is a military readiness issue and must be treated as such to do proper justice to the men and women in uniform. Malachowski serves as an advocate for patients suffering from tick-borne disease and for the Congressionally Directed Medical Research Programs’ Tick-Borne Disease Research Program to help the Department of Defense and the Veterans Administration take a leadership role in addressing this significant problem.
Dana Parish
Sony singer-songwriter, author, and patient advocate Dana Parish, who has numerous chart-topping singles, including “Not My Problem” and “Let it Go By,” and collaborations with husband Andrew Hollander, Kenny “Babyface” Edmonds, Celine Dion, Jacquie Lee, and Idina Menzel, among others, has also struggled with Lyme disease. Despite early antibiotic treatment after discovering a rash in early 2014, she continued to experience worsening symptoms. Two years and many medical consultations later, Dana is again on antibiotics with a confirmed diagnosis of persistent Lyme infection. Parish is “fighting the good fight,” but making progress. She co-authored along, with Dr. Steven Phillips, “Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again,” due out in May. Backed by a trove of published data, “Chronic” reveals striking evidence that a broad range of microbes, including the Lyme bacteria, causes a variety of recurrent conditions and autoimmune diseases. “Chronic” delves into the history and science behind common infections that are difficult to diagnose and treat, debunks widely held beliefs by doctors and patients alike, shows how medicine got the facts patently wrong, and provides solutions that empower readers to get their lives back.
Kris Newby
The author of “Bitten,” while on vacation on Martha’s Vineyard, Newby was bitten by an unseen tick. That one bite changed her life forever, pulling her into the abyss of a devastating illness that took 10 doctors to diagnose and years to recover. Newby had become one of the 300,000 Americans who are afflicted with Lyme disease each year. As a science writer, she was driven to understand why this disease is so misunderstood, and its patients so mistreated. This quest led her to Willy Burgdorfer, the Lyme microbe’s discoverer, who revealed that he had developed bug-borne bioweapons during the Cold War, and, believed that the Lyme epidemic was started by a military experiment gone wrong.
“Bitten” takes readers on a journey to investigate these claims, from biological weapons facilities to interviews with biosecurity experts and microbiologists doing cutting-edge research, all the while uncovering darker truths about Burgdorfer. It also leads Newby to uncomfortable questions about why Lyme can be so difficult to both diagnose and treat, and why the government is so reluctant to classify chronic Lyme as a disease.
Dr. Ying Zhang
Zhang is a professor of molecular microbiology and immunology at Johns Hopkins Bloomberg School of Public Health. His research interests are focused on antibiotic resistance, bacterial persistence, and development of more effective treatments for a wide variety of persistent bacterial infections, including tuberculosis. Recently, he has been working on the challenging problem of persistent Lyme disease. Zhang’s group has identified a variety of FDA-approved drugs as well as some essential oils that are more effective in killing Borrelia burgdorferi persisters in vitro than the current Lyme antibiotics.
Dr. Richard Horowitz – conference keynote speaker
From one of the country’s foremost doctors come groundbreaking books about diagnosing, treating, and healing Lyme, and peeling away the layers that lead to chronic disease, “Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease” and “How Can I Get Better?.” Horowitz introduces the reader to his 16-point differential diagnostic map, the basis for his revolutionary Lyme treatment plan, and an overarching approach to treating all chronic illness. He sheds light on Multiple Systemic Infectious Disease Syndrome, a new lens on chronic illness that may prove to be an important missing link. Horowitz covers in detail Lyme’s leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain, and neurodegenerative disorders — providing a unique functional and integrative health care model, based on the most up-to-date scientific research, for physicians and health care providers to effectively treat Lyme and other chronic illnesses. Horowitz offers new therapies to rid bacterial “persister” cells (resistant to antibiotic) and offers doctors and patients a seven-step action plan to better health.
In March, we will be posting the full day’s agenda along with breakout sessions. Again, there is no advance registration — the doors will open at 7 a.m. The venue is handicapped-accessible and we are prepared to seat up to 1,500. If you are traveling and need to stay overnight, we have special rates at local hotels. Lunch, beverages, and snacks will be available onsite at cost and the menu along with hotel information is posted on the “Conference” tab on our website, mldse.org.
This “do not miss” event promises to deliver and not disappoint! So, mark your calendar and keeping checking our website and social media — Twitter and Facebook — for more conference updates and announcements.
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, a nonprofit 501(c)(3) organization; the Maine partner of the national Lyme Disease Association; and member of Maine CDC’s Vector-borne Disease Workgroup. She is active in Lyme legislation. Email her at paula@mldse.org or go to mldse.org for more information.)
