After serving four years in the U.S. Coast Guard, Brandi Dean was used to tackling tough missions head-on. But in 2011, she faced one that was largely out of her control: battling Lyme disease. In October 2010, Brandi was living in Boston and pregnant with her son Finn when she was bitten by what she thought was a spider. It left a bruise “the size of a softball.” Even though it was alarming, she tried not to think much of it. Symptoms like vertigo, unsteadiness, and heart palpitations soon followed, but she just assumed they were a side effect of her pregnancy. Shortly after she gave birth, her symptoms began to intensify, and she ended up in the emergency room. There, Dean was diagnosed with Lyme disease, and it would end up changing the course of her life.
Dean received treatment for Lyme, but soon after finishing, her symptoms returned. They were so severe, it left Dean incapacitated for months at a time, inhibiting her ability to move her arms and legs and causing immense muscle and joint pain.
“The symptoms were far more severe than I had ever experienced… I told people it was like being tortured from the inside out,” she says. The physical pain was met with mental distress, as the disease pushed Dean to have severe anxiety and panic attacks. “I really think that the infection and inflammation affected my brain as well, because I felt like I was such a burden on everyone around me,” she says. “I lost hope that I was going to push through.”
During this time, she made countless appointments to try and find another solution for more treatment options. But instead of doctors diagnosing her with chronic Lyme and suggesting further treatment options, most of her appointments ended with misdiagnoses of anxiety or stress.
Though it’s estimated that there are nearly 330,000 new cases of Lyme disease each year in the United States, current diagnostics miss up to 60 percent of acute cases, according to the Bay Area Lyme Foundation. Dean was part of the latter percentage; medical professionals were unequipped to properly diagnose her symptoms, and frequently wrote them off as the side effects that come with raising small children.
“If I received the proper treatment from the beginning… I would not have had to suffer like I did years after that bite,” says Dean.
After learning first-hand that the treatment aid for chronic Lyme disease was few and far between, Dean decided to take matters into her own hands to not only help herself but help others as well. In 2015, she founded and developed The Dean Center for Tick Borne Illness, which serves as both a research program and specialized clinic to help with the emotional and financial burdens of chronic Lyme disease.
In 2016, her home state of Massachusetts officially mandated that insurance companies cover the long-term care of patients with Lyme disease. It was a step in the right direction, according to Dean, but this is not the case for insurance companies in all 50 states.
Based on both Dean’s personal treatment and information from The Dean Center for Tick Borne Illness, a typical week of IV antibiotics can cost upwards of $5,000, and that’s excluding other medical expenses, like in-home nursing care.
“The cost is just extraordinary and we’re fortunate that we had the resources to pay for that, but many patients don’t,” says Dean. “That’s why [The Dean Center for Tick Borne Illness] helps patients on a weekly basis who are losing their homes and taking on a huge amount of debt.”
Even though Dean founded the Center to help others, she still had a long personal battle ahead. In May 2016, she was bitten again by a tick carrying the virus and suffered with symptoms every day. This time, when searching for a solution, she turned her research overseas.
In August of 2017, she received hyperthermia treatments at Klinik St. Georg in Germany. Dean says that just one day after treatment, her difficulty breathing, chest pain, anxiety, numbness in her legs, and brain fog seemed to disappear immediately; she was even able to walk up a hill to see a castle in Austria. She lived virtually symptom-free for seven months after treatment, and to this day, she has infrequent and minor symptoms.
After recovering from the second tick bite, Dean began to incorporate exercises like yoga back into her routine. Though she hadn’t done a lot of cardio in a while, a trip to a Soul Cycle class with a friend opened a new chapter in Dean’s life and gave her a new idea for raising money for the Center.
“[Soul Cycle] was this message of strength, and hope, and it was so inspiring I left the class in tears and I remember thinking this would be a great place to bring our [Lyme] community together,” she says.
Dean believes that support systems are essential for those battling Lyme disease.
“That sense of compassion from [my] community really helped me pull through… I feel like I had lost the strength to pull through the difficult days and if it weren’t for the strength of my family and friends I don’t know if I’d be here today,” she says.
She has since created a Lyme disease fundraiser along with her friend and co-founder, Jill Fulginite. Partnering with Soul Cycle, Ride Out Lyme’s charity spinning classes raise funds for the “treatment, wellness and support programs for Lyme patients and their caregivers,” according to the fundraiser’s website. Ride Out Lyme’s next event will take place in New York City on May 19.
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Keep these stories coming. Shout this to the world. The tide will turn when enough people in positions of power are affected by this plague. Lyme/MSIDS is causing homelessness, suicide, and outright misery and death. It is not a simple case of fatigue and joint pain in a multitude of patients.