Brandi Dean Lyme Warrior and Founder of Ride with Lyme Shares her story with us.
In October of 2010, I was bitten by a bug and ended up with a large bruise on my backside. I would not recall that bite until several months later when I was rushed to the ER in July of 2011 with my husband. I was numb along the right side of my body, disoriented, and my heart was racing. I was prescribed three weeks of antibiotics after a positive Lyme test. When I completed the three weeks of antibiotics, I was overcome with an onset of new symptoms: vertigo, heart palpitations, debilitating muscle weakness, fatigue, daily panic attacks, heart palpitations, and intermittent hearing loss. During this time, I had a second positive Lyme test and went to over a dozen doctors – all of them refuted my positive tests because they didn’t believe that the neurological symptoms that I was experiencing were due to Lyme. I didn’t have the tell-tale bulls-eye rash or the achy joints and flu-like symptoms so they insisted that anxiety or a viral infection were causing my illness. They even suggested that the viral infection was causing me to test positive for Lyme disease. I could not walk more than a block without becoming physically exhausted. I had to squint my eyes to read and became dizzy when I read more than a few sentences. I could no longer exercise and barely had enough energy to take care of my kids. My diagnosis: Anxiety, Vestibular Neuritis, and a viral infection. My treatment: Ativan, Zoloft and Vestibular Rehab Therapy.
Reading the notes written in my medical records were demoralizing. One doctor wrote that I seemed to have a tendency of catastrophizing, suggesting I was overreacting and that my illness was all in my head. Other doctors wrote that they were confident that I did not have Lyme due to the timing of the tick-bite in the Fall and the neurologic symptoms did not seem to fit the diagnosis for Lyme. Every doctor’s visit was traumatizing.
I received my third positive Lyme test in December of 2011 and was prescribed 31 days of IV antibiotics. Within days, the vertigo, fatigue, anxiety, light and noise sensitivity were resolved and I was able to exercise again. These symptoms never returned but as soon as I completed the course of IV antibiotics, the brain fog, head buzzing and pressure headaches came back. I spent years on and off oral antibiotics and herbs but I started running again, and was enjoying my bootcamp style classes, mixed in with some yoga and was an active contributing member of society again. This period of wellness lasted for two years until I was bitten by a tick in May of 2016. This time, I came down with the summer flu, achy joints and muscles, nausea, an intolerance to heat and a very dark depression and sense of panic that terrified me. My symptoms were physically and emotionally debilitating. I had lost all hope that I would ever get better again. I was desperate to get well again. This desperation for wellness led me to the St. Georg Klinik in Bad Aibling where I had Hyperthermia treatment. I had significant improvements and am now 90% better.
This experience has encouraged me to turn my pain into passion. I learned a lot about Post Traumatic Growth and the positive psychological changes one can experience as a result of adversity. Overtime, I was able to focus on these positive changes and learned to embrace my new normal. I discovered my new passion of giving hope to those who are in the trenches now by providing resources and a supportive community at Ride Out Lyme and the Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital. I am also teaching my children every day about the POWER OF COMPASSION and HOPE. I am here today because of the compassion I received from my “Wellness Team” that included my doctors, physical therapists, acupuncturist, friends and family. They gave me the hope and strength I needed to keep fighting. Compassion, Hope, and Community are so incredibly powerful. I am so grateful for this community of inspiring “Lyme Warriors” who are raising awareness about tick-borne illness while lifting each other up. I don’t know where I’d be without them.