When Lyme Stole Her Wings, Her Will Took Flight: The Kaylyn Goode Story
Visualize yourself as a child on your grandparents’ farm. The sun is shining brightly, and you have just spent the day running through Mississippi’s boundless oaks and pines. While most of your upbringing has alerted you to venomous copperheads or menacing coyotes, an unsuspecting predator amongst these woods remains undetected. Lurking is Ixodes scapularis, or the common deer tick, which has just latched onto your skin and proceeds to take a bite. Borrelia burgdorferi, the bacteria transmitted from the tick, has entered your bloodstream. Depending on how long the Ixodes tick was attached, and if you caught it in time to tweeze it off your skin, your life could change. You might join Kaylyn Goode, and roughly 476,000 people across the United States who have been diagnosed with Lyme Disease.
Kaylyn Goode has resided in Hernando, Mississippi since the sixth grade. Throughout her childhood, Kaylyn experienced attention difficulties and anemia. Despite these challenges, she did not receive her first Western Immunoblot test until age nineteen. A couple of months earlier, Kaylyn had sustained a second bite. This further aggravated her preexisting symptoms. Before her first Western Immunoblot test, Kaylyn experienced a disseminated rash that initiated a prompt visit to a primary care physician, who then referred her to a dermatologist. After being told the rash was psoriasis, Kaylyn followed the doctor’s orders and remained undiagnosed.
Had I known what I know about Lyme Disease, I would have asked for the results back myself for me to look at. I have since learned that the testing offered by the CDC is not always accurate, and the guidelines that are required for a person to have Lyme Disease are wrong.
She would remain undiagnosed for the next seventeen years.
Lyme Disease can affect several parts of the body. Classically, patients present with a ‘bullseye rash’ first during the ‘early localized disease’ stage. Then, one might experience vague flu-like symptoms for years, as well as brain fog, gastrointestinal issues, or fatigue, which can be misdiagnosed as fibromyalgia or chronic fatigue syndrome. Days to months after a tick bite, patients can experience the ‘disseminated disease’ stage, characterized by diverse clinical manifestations across multiple organs. It is important to recognize that Lyme Disease does not always adhere to these specific guidelines. As seen from Kaylyn’s case, patients may experience a wide range of symptoms.
Following the first negative Western Immunoblot test, Kaylyn was officially diagnosed with Late-State Neurological Lyme Disease - a rare subcategory.
During her diagnostic odyssey, Kaylyn had positive immunomarkers for both Rheumatoid Arthritis and Lupus, yet no indicators pointed to Lyme Disease. While Kaylyn received a negative Western Immunoblot test at the beginning of her journey, it was only five years ago that a repeat Western Immunoblot test demonstrated positive bands; her results were indeterminate since the number of bands did not meet the CDC’s required 5/10. In 2025, a local healthcare provider ordered an antibody test that confirmed that Borrelia burgdorferi bacteria were still present. Because the tick bite can also transmit other bacteria aside from Borrelia burgdorferi, Kaylyn ordered a co-infection test, which was positive. The positive indicators, being Mycoplasma and Babesiosis, are being treated as mild co-infections by her doctor.
A lot of people have more co-infections than I do. It just goes to show you how the one bacterium, Borrelia burgdorferi, is so harmful by itself.
Treatment for Lyme Disease remains uncharted territory. Typically, the first line of defense is a round of oral antibiotics lasting ten to fourteen days. However, antibiotics like doxycycline, amoxicillin, etc., are only effective during the early stages with prompt intervention. Repeated usage of antibiotics does come with negatives, like antibiotic resistance in already immuno-compromised patients. In certain instances, for late-stage cases, fourteen to twenty-eight days of intravenous antibiotics such as Ceftriaxone may be used for encephalopathy or Lyme carditis. Those with chronic Lyme Disease have frequently encountered issues regarding insurance coverage for these treatments. In determining how much coverage permits, insurers will refer to the Infectious Disease Society of America for guidelines. These guidelines, however, are primarily for standard initial care without the inclusion of chronic conditions. Awareness is improving, given that the Centers for Disease Control and Prevention (CDC) now recognizes that Lyme Disease can lead to ongoing symptoms. Further research in FGFR Inhibitors and Neuromodulation Techniques will be needed for the future of post-treatment.
Throughout her life, she dreamed of becoming a pilot, wishing to soar above her diagnosis and determined to navigate the sky of rare disease with resilience. Unfortunately, that dream has been cut short by her debilitating manifestations. However, when one door closes, another one opens. In spite of her obstacles, Kaylyn’s future shines brightly. Living in the Southeast - where knowledge and treatment of Lyme Disease are quite limited - Kaylyn aims to act as a guide. A rare disease advocate focusing on Lyme literacy and helping to remove barriers to health disparities.
I have learned that I am resilient. I have learned that I can take on any storm. I have learned that I love more deeply.
Kaylyn’s journey is far from over, as she continues to struggle with antibiotic resistance and treatment-related toxicity—complications that have arisen due to the constant battle of fighting Lyme Disease. She is determined to raise awareness for the rest of her life.
