How former US Coast Guard Search and Rescue soldier Brandi Dean became a beacon of hope for patients with Lyme disease and other long-term tick-borne illnesses

INTRODUCTION BY ANN HAUPRICH

Brandi Curtis Dean was well prepared to weather stormy seas while serving with the US Coast Guard Search and Rescue (SAR) division. But nothing could prepare the Saratoga County native for the storms of life that would develop — testing her courage, endurance and health care navigational skills to the limit — in the aftermath of a tick bite in 2010.

These days Brandi is widely regarded as a beacon of hope whose advocacy and fund-raising initiatives are akin to life rafts for many whose lives were thrown off course and set adrift in uncharted waters after being infected by a bug bite. The fact that she was tapped to address a global conference on Lyme disease and other long-term tick-borne illnesses speaks volumes about her expertise on this health care issue that was recently showcased in a documentary titled The Quiet Epidemic (https://ballstonspaliving.com/the-quiet-epidemic/).

The transformation from debilitated Lyme victim to tireless crusader for change did not, however, happen overnight. To better appreciate Brandi’s inspiring story, one needs to rewind to just over a decade ago when the former Geyser Crest resident was a young mother in Boston who kept fit by hiking, mountain biking, jogging and practicing yoga.

It was shortly after discovering a tick bite on her bottom (there was NEVER a bull’s eye rash) that Brandi began to experience symptoms ranging from extreme fatigue to vertigo to intermittent hearing loss to tingling and weakness on one side of her body.

But it wasn’t until after she had to lean on the double stroller she was pushing in which her then two-year-old and five-month-old sons were passengers in order to maintain her balance that the former Special Assistant to the Commanding Officer of the US Coast Guard’s New England region finally gave into waves of emotion and broke down sobbing.

Teddy Roosevelt’s poignant passage that “Courage is not having the strength to go on; it is going on when you don’t have the strength” comes to mind when pondering the fortitude Brandi ultimately mustered and the unsinkable spirit she maintained following that turning point in her Lyme disease battle. The treatments she received over a four-year period included IV infusions of antibiotics and hyperthermia treatments in Germany. Helping Brandi stay anchored throughout this tumultuous time were her children Rylan and Finn, as well as her father, Bruce Curtis, and her mother, Barbara Harrison, both of whom are Ballston Spa High School alums. “It was very lonely and scary when Brandi was first diagnosed because the common belief was that it was no big deal. There was so little accurate information at that time and no personal stories making it difficult for Lyme patients to find connections with others who could relate to their conditions,” recalls Barb, who marvels at her daughter’s steadfast perseverance.

Brandi, whose achievements include cofounding the Dean Center for Tick-Borne Illness at Spaulding Rehabilitation Hospital near Boston, now serves on the Board of The Alex Manfull Fund as well as being an Advisory Board member for the Bay Area Lyme Foundation. Brandi has additionally been featured in the Boston Globe, DoctorOz.com, Fox News Boston, WCVB Boston, NPR, Good Housekeeping and Wellesley Weston Magazine. Brandi’s unwavering determination to make a positive difference in the lives of Lyme disease patients is further demonstrated in her leadership of Ride Out Lyme, a charity event she designed and that raises funds to provide grants for adults with the illness. Annual Ride Out Lyme events are held at SoulCycle in Boston, NYC and Los Angeles with expansion into other cities.

 

The following Q & A between Ann Hauprich and Brandi Curtis Dean spotlights more of her extraordinary ongoing humanitarian “search and rescue” mission

 

Q: A companion piece at the conclusion of this Q&A highlights some of the memories your Baby Boomer Mom (Barbara Harrison, BSHS Class of 1967) most cherishes about blissful fresh air adventures in a Ballston Spa neighborhood that was in close proximity to woodlands. Was your own childhood equally carefree in terms of running and playing in The Great Outdoors without needing to be mindful of preventing tick bites?

A: I’d spend hours with my friends exploring the forest behind our suburban homes in the Geyser Crest development. We’d crawl through bushes to look for small critters to bring home to our siblings. We climbed trees, covered ourselves with piles of leaves, and ran through meadows surrounded by blades of tall grass. When I think about it, it makes me sad that my children are not able to experience the carefree childhood that I was accustomed to as I was growing up because of the threat of Lyme. I didn’t learn about Lyme disease until I was in college and, even then, I thought that Lyme was a disease that was easily preventable and treatable. Since my own diagnosis just over a decade ago, I have seen it ravage the lives of so many people. My children have never gone hiking through the woods, nor have they jumped into a pile of leaves, or experienced the classic outdoor exploration that was so common to me. During their early years, as I was stricken with this frightening illness, instead of exploring, they became accustomed to seeing me attached to my IV pole, and my countless visits from nurses, and friends. When they were in elementary school, one of their friends, an avid figure skater, became very sick with Lyme and has never fully recovered. I’d like to say that their experience, although unfortunate, has turned them into the most compassionate and empathetic boys. Although I wish we never had to go through the challenges of recovering from Lyme, I believe that it has made us stronger and more appreciative of the things that REALLY matter in life. It has also connected us with so many beautiful people in our community.

Q: What do you most miss about your family’s life BEFORE Lyme prevention became part of preparing for outings to parks, playgrounds, outdoor sports fields, etc? And what advice do you have for other parents as Mother Nature beckons them to let their youngsters venture outside to play in the fresh air?

A: I loved spending time outdoors with my boys. I dreamed of taking them on camping trips, long hikes, and walks down wooded paths. I always enjoyed the beauty of nature and looked forward to sharing it with them. I miss that feeling of absolute peace and tranquility when I am surrounded by nature. After I got sick, I was overcome with fear and trepidation every time my boys walked through the grass. I wanted to do everything possible to protect them, even if it meant preventing them from enjoying all the things I loved growing up. I realize now that I have to let them be boys, but they do it safely, knowing what one bite from a tick can do. I spray their shoes and socks with permethrin, and they apply bug repellent before they go out to play. They do daily tick checks (under the arms, behind their ears, between the legs, etc.) and shower every night to wash off unattached ticks. I often put their clothes directly in the wash and dryer on high heat for 10 minutes to kill ticks that might still be attached to their clothing. I also check all of their bags and gear and leave them in one area of our home to avoid bringing ticks into the residence.

Q: Your Lyme journey as meticulously documented in the August 2016 edition of Good Housekeeping magazine has been extraordinary. What impresses me most is that you have become a power of example for others who are coping with tick-borne illnesses. Looking back over the past decade, what has been the most rewarding part of your public education and advocacy initiatives?

A: The most rewarding part of my advocacy initiatives are the meaningful connections I’ve made with people all over the world. I am so inspired by this tight-knit community of incredibly strong and brave people, many of whom are advocating from their beds. I also love what this experience has taught my boys. While I was struggling to recover, my boys were learning a valuable life lesson – what it looks like to persevere and overcome challenging moments in your life. A few years ago, my son Rylan gave a speech to a room full of people about overcoming adversity. To my surprise, he shared my story. As he shared his sentiments (found below), I cried. It was in that moment that the guilt of not being “supermom” during the years I was sick was lifted. I realized that a little love from my bedside was just enough to touch their little hearts. “Something that helped me during my mom’s illness was her selflessness. She was very sick and wanted to help others get through the pain that she was going through…she was very sick, but never gave up and kept on helping others. There are some things she cannot do now but the things she can do, she does better than anyone. Learning from this experience taught me many things – to be thankful for what you have, to be selfless, not selfish, and that everybody has obstacles and when you believe in yourself and try your best, you will overcome the many obstacles in your life.” – Rylan Dean, March 2020

Q:
What has been the most challenging part?

A: Lyme disease is an illness that, if not caught early, is severely debilitating, physically, emotionally and financially. It is so hard to hear stories of lives that have been lost to this illness. I’ve seen children who are now permanently disabled because doctors refused to treat them, even when presented with positive tests for tick-borne infections. I’ve received multiple letters from people who are desperate for help. Sadly, two of them died by suicide because they did not have the support or the financial means to pay for treatment. It is absolutely heart-wrenching to hear about the hundreds of thousands of people who are suffering. Although my advocacy work feels overwhelming at times, I am hopeful that one day our efforts will be fruitful to be able to offer the support, relief and funding necessary to tackle this challenging disease. There are so many advocates around the world who are using their voice to raise awareness and educate our medical community, to work with legislators to secure federal funding for vital research and diagnostics, to raise money for patients in need of financial assistance and to lend a helping hand to people living with Lyme.

Q: You were on the March 2022 program to benefit the Global Lyme Alliance. Kindly share highlights of the message you presented to the virtual conference on that date.

A: Our team talked about the financial burden many people with Lyme experience as well as touching upon our mission to raise funds for people who are in need of financial assistance to pay for their medical treatments. We also shared our personal stories and how they have provided hope, strength, and purpose in our lives.

Q: What would you most like readers to know about the Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown, Massachusetts and Ride Out Lyme?

A: As a result of my own traumatic experience living with this debilitating illness that wasn’t recognized by many physicians, including my own doctors, I joined hands with Spaulding to fill the void for long-term, affordable patient care and research for patients with persistent tick-borne illness symptoms. The Dean Center earned recognition for its compassionate, open-minded and comprehensive, multi-disciplinary team approach to patient care spanning almost nine years from 2014 to 2022. I launched Ride Out Lyme, Inc. (ROL) after realizing that many Lyme patients were unable to afford treatment. ROL is a nationally-recognized non-profit, partnering with SoulCycle, to raise funds for people with Lyme who are in need of financial assistance to cover the burden of their medical treatments. As many as 30 percent of people diagnosed with Lyme develop chronic symptoms, and, in most states, treatments offered past the initial three weeks of antibiotics are not covered by insurance. Many patients pay as much as $5,000 a week for antibiotics and other treatments – totaling an astounding $53,000 per year. Since its inception, ROL has raised over $500,000 while hosting charity rides and wellness events that offer not only necessary funding but hope and strength for people with Lyme.

Q:
How can readers assist in your quest?

A: Share your stories, donate, organize a local event, or join and volunteer for an organization focused on raising awareness, education, patient support, and research for tick-borne illness. We are always looking for volunteers to help us raise awareness while raising funds for people living with tick-borne illness. If you would like to get involved, please contact info@rideoutlyme.org.

 

 

Raking up memories of carefree outdoor fun before Lyme became a health care concern

BY ANN HAUPRICH

Generations of elders have delighted children by demonstrating how to preserve the splendor of bright orange, yellow, red and/or crimson autumn leaves by pressing samples of Mother Nature’s colorful creations in between sheets of wax paper. But how to impress upon today’s youth colorful memories of what it was like to enjoy carefree activities and adventures in the great outdoors before Lyme disease became a TICK-ing time bomb of a health care issue?

Although Brandi Dean regrets her sons have never known the exhilaration of spontaneously jumping in piles of leaves (see above Q&A), she is elated their maternal grandmother, Barbara Harrison, and her lifelong friend Jody Wheeler accepted an invitation from Ballston Spa Living to share fond recollections of fresh air experiences during the Eisenhower and Kennedy eras.

The formative years of Barb, who graduated from Ballston Spa High School in 1967, followed by brothers Glenn and Wayne in 1969 and 1971 respectively and their younger sister Lynne in 1981, were spent in a nurturing home on Pinewood Lane, just off Rowland Street.

“Our summer fun days started right after breakfast, ended after dark and most of us spent the entire time outside, breaking only for supper,” remembers Barb. “There were long walks in the woods, picnic lunches on the grass, camping out on the ground under a cluster of trees and running through a sprinkler or playing kick the can on the lawn of one of the neighborhood houses. Sometimes, my friend Jody and I laid on pine needles when watching clouds moving through the summer sky as we created stories to match the changing formations. I can still hear everyone’s laughter as we ran and jumped in huge piles of colorful leaves that we raked up in the fall. The outdoors was full of fun, joy and beauty and a place where the Pinewood Lane kids created so many wonderful, carefree memories. Now, I cringe when someone walks through grass with no shoes. After watching Brandi’s struggles, my carefree relationship with nature has changed. It was,” she emphasizes. “very lonely and scary when Brandi was first diagnosed because the common belief was that it was no big deal. There was so little accurate information at that time and no personal stories making it difficult for Lyme patients to find connections with others who could relate to their conditions.”

Now a seasoned children’s book illustrator, Jody Wheeler (BSHS Class of 1970) also treasures “wonderful memories of playing outside all day and climbing the huge pine tree down the street. My dad (Byrhl) would rake huge piles of leaves for me and my brother Rodney (Class of 1971) and our sister Betsy (Class of 1973) to jump in. The only danger I recall was when we were all playing hide and seek in our front and back yard. One day our dad joined us and hid in the leaves behind a big tree. He happened to lie on a ground bee nest and the bees swarmed over all. One boy was allergic so bee stings were to be feared. Now I spray myself with tick repellant just to walk in the grass to the garbage can. And I still watch out for bees.”

It is noteworthy that Jody drew inspiration from her own girlhood memories when creating the whimsical watercolor that accompanies this story. The masterpiece that captures the bliss of kids romping in colorful autumn leaves before Lyme disease became a household name was crafted for a Touch and Feel Ideals board book titled Happy Thanksgiving Day! To learn more, please visit www.wheelerillustration.com.

ADDENDUM: A second article about tick-borne illnesses by Ann Hauprich will showcase an in-depth interview with SUNY/Adirondack microbiology professor Holly Ahern, whose distinguished credentials also include co-founding Lyme Action Network (LAN) in New York and serving as Scientific Advisor for the Arizona-based Focus on Lyme Foundation.

While waiting to read that feature early in the New Year, we hope you’ll enjoy a great song that was created by a team at PA Lyme Resource, called “Tick Check” which more or less says it all (video below).

 

 

Read all about librarian’s favorite books on Lyme disease and other tick-born illnesses:

BY ANN HAUPRICH

Village of Ballston Spa Librarian Andrea Simmons has always been a voracious reader of books on a broad variety of health and wellness topics.

But titles containing content about Lyme disease and other tick-borne illnesses have held an extra special fascination for Simmons since she and husband Brian discovered a tick burrowing into one of their younger son’s ear..

“Both Zachary and his older brother Josh were – and still are – avid soccer players,” noted Simmons. “On this particular occasion we had stopped at a store on our way home from a sports field in the Luther Forest area of Malta, when I just happened to glance down at Zac, who was then a preschooler, and spotted the tick that was clearly in the process of imbedding itself in his ear. Although both Brian and I had educated ourselves as much as possible about tick bite prevention and how to remove ticks from the skin, neither of us dared to risk poking around that close to body part our son would need in order to hear properly for the rest of his life.”

For this reason the couple rushed to the nearest urgent care center where a qualified specialist safely removed the tick and provided the parents with instructions for follow-up care. “It’s so important for parents and coaches to be mindful of the fact that ticks pose a risk to youngsters who practice and compete in games on outdoor sports fields,” says Simmons, whose family members continue to take tick bite prevention precautions and do thorough skin checks before outdoor sports and recreation activities, including camping.

When patrons at the Ballston Spa Public Library, which is a member of the Southern Adirondack Library System, ask Simmons to recommend books on the topic, her top picks include:

Books for Adults/Teens:

1. Lyme Disease, Ticks & You, by, Shelley Ball, 2021 ISBN: 9780228103202
2. Recovery From Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness, by, Dr. Daniel A. Kinderlehrer, 2021 ISBN: 9781510762053
3. Bite Me: How Lyme disease stole my childhood, made me crazy and almost killed me (memoir) by, Ally Hilfiger, 2016 ISBN: 978145567065

 

Books for Children and their Caregivers:

1. Lyme Disease: The Beginners Guide on how to treat Lyme Disease, by, Dr. Randall Ramaiah, 2021 ISBN: 978849746620
2. Mylie’s Lyme Story, by, Alexandra Castellanos, 2020 ISBN: 9780578746609
3. When Your Child Has Lyme Disease: A Parent’s Survival Guide, by, Sandra K. Berenbaum, 2015 ISBM: 9780996224307