Episode 550: Jesse Ruben: Chronic Lyme Disease, Music, Remission, Relapse, and the Long Road Back

Singer-songwriter and Lyme disease advocate Jesse Ruben joins the Tick Boot Camp Podcast for an incredibly honest, emotional, and deeply educational conversation about chronic Lyme disease, identity loss, treatment failure, unconventional healing, relapse, nervous system trauma, and the role of music and community in survival. Jesse’s journey spans more than a decade and includes misdiagnosis, years of antibiotic treatment, experimental therapies, remission, relapse during the pandemic, gut microbiome restoration, nervous system healing, and ultimately a renewed sense of purpose through advocacy and art. This episode is essential listening for anyone navigating chronic Lyme disease, supporting someone who is sick, or questioning whether healing is still possible. Jesse Ruben’s Early Life and Music Career Jesse grew up outside Philadelphia, surrounded by music, creativity, and curiosity. While he jokes that his songwriting degree was “a very expensive, useless piece of paper,” the competitive creative environment of music school helped sharpen his storytelling voice. By his early 20s, Jesse was living in New York City, touring, running marathons, and building momentum as an independent musician. He had just completed his third New York City Marathon, was in peak physical condition, and his career was accelerating—until his health began to unravel. The Onset of Illness: When Lyme Disease Took Everything Jesse’s first red flag appeared when he became short of breath climbing subway stairs, despite being a marathon runner. Soon after, nausea, dizziness, headaches, neurological symptoms, and crushing fatigue followed. On Christmas Day 2012, Jesse developed what seemed like a flu that never went away. Over the following months, symptoms escalated dramatically: Severe fatigue that made basic movement impossible Brain fog and memory loss Crawling sensations under the skin Air hunger and dizziness Anxiety, depression, and mood changes Weight loss and neurological dysfunction Despite seeing 15 doctors over nine months, Jesse received conflicting diagnoses ranging from vitamin deficiencies to fibromyalgia and lupus. Every test came back “normal.” Insurance denied coverage. Doctors told him he would “have to live with it.” During a national tour, Jesse was so debilitated that a friend physically lifted him onto the stage to perform, then carried him back to the van afterward. Eventually, through relentless self-research, Jesse discovered a symptom list online that finally connected the dots: Lyme disease. Diagnosis and Early Treatment Failure Jesse was ultimately diagnosed at the Morrison Center in New York City, where testing confirmed: Lyme disease Babesia Mycoplasma His initial treatment path included: 6 months of oral doxycycline 18 months of IV azithromycin Antiparasitics Mepron (for Babesia) Antifungals, antivirals, supplements, and Chinese herbs Despite years of treatment, nothing produced lasting improvement. Jesse describes his life during this period as being reduced to pill schedules, doctor visits, and survival mode. The Game Changer: Chelation and Ozone Therapy After nearly three years with minimal progress, Jesse’s provider, Dr. Gerald (“Jerry”) T. Simons at the Morrison Center, suggested a more experimental approach: chelation combined with ozone therapy. Jesse underwent IV chelation and ozone therapy multiple times per week for several months. The results were dramatic. Nearly all of Jesse’s symptoms resolved, and for the first time, he felt like himself again. Even years later, booster ozone treatments helped stop symptom flares before they escalated. 🔗 Learn more about Dr. Simons and the Morrison Center: https://www.morrisonhealth.com/staff/gerald-t-simons-pa-c/ Remission, Identity Loss, and the Hidden Trauma of Healing Jesse entered remission around 2016, but recovery wasn’t simple. While his body improved, his nervous system remained dysregulated, leaving him: Angry Hypervigilant Emotionally reactive Afraid symptoms would return Lyme disease had stolen not only his health but his identity as a musician, partner, and person. Re-entering the world—socially, professionally, and emotionally—was deeply challenging. Music Born From Illness Jesse channeled his experience into music that resonated deeply with the Lyme community. 🎵 Monster Written from a voice memo recorded at 4:45 a.m. during a rare moment of mental clarity, Monster captures the fear, rage, and disbelief of living in an invisible war within your own body. 🔗 Watch “Monster”: https://www.youtube.com/watch?v=xJQKVSA_7Gw 🎵 This Is Why I Need You Written after Jesse entered remission, this song is a tribute to the doctors, nurses, friends, and strangers who carried him through the darkest years. It has since surpassed tens of millions of streams worldwide. 🔗 Watch “This Is Why I Need You”: https://www.youtube.com/watch?v=C4NgsbkyeJs Generation Lyme: Turning Pain ...