13 minute read
MAY is Lyme Disease Awareness Month…
A perfect time to help educate families and friends about a TICK-ing time bomb of a health care issue.
WRITTEN BY ANN HAUPRICH
There’s a saying in Lyme Action Network circles that when it comes to fully grasping the complexities of the tick-borne illness maze, most people “don’t get it until they get it.” This adage certainly holds true of Brandi Dean, Linda Reeves and John Romano –whose personal tick-bite recovery journeys form integral parts of this multi-tiered wellness feature by Ann Hauprich. To read the piece in its entirety, please go to SimplySaratoga.com. A companion piece about Andrea Simmons includes Lyme titles recommended by the librarian, who found a tick in her younger son’s ear when he was a preschooler. Rounding out the quest to help educate readers during Lyme Disease Awareness Month is an exclusive Q & A Saratoga Family contributor Hauprich recently conducted with SUNY/ Adirondack Microbiology Professor Holly Ahern, whose distinguished credentials also include cofounding the Lyme Action Network in New York’s Capital Region and serving as Scientific Advisor for Arizona-based Focus on Lyme Foundation. The interview clearly reveals both Ahern’s scientific knowledge and her empathy for the suffering that tick-borne diseases inflict on many patients and families.
Read the full story on SimplySaratoga.com
Former Ballston Spa Mayor nearly lost his life to a malaria-like tick-borne disease in 2020
As namesake of a scenic nature trail along the banks of the mighty Kayaderosseras in Ballston Spa’s Kelley Park, former Mayor John Romano wants families to enjoy this and a multitude of other upstate New York outdoor sports and recreational settings to the fullest. But Romano, who nearly lost his life to a tick-borne illness in 2020, also wants lovers of fresh air adventures and activities to take Lyme disease prevention precautions before and after each and every fresh air outing. “I’d never heard of picaridin or permethrin until I was being discharged from the hospital after a three-week long stay during which I ran dangerously high fevers and received both blood transfusions and blood platelet infusions,” says Romano. “Now I won’t leave the house without first applying a picaridinbased insect repellent to my skin and spraying my clothing with a permethrin product that causes ticks to die and fall off.” (Both organic substances are available in the pharmaceutical sections of most stores.)
Former Ballston Spa Mayor and John Romano Nature Trail namesake. Photo by Ann Hauprich.
“I’m not normally one to share my personal health history with strangers, but if doing so, helps prevent even one person from going through what I did, it will be worth it,” says Romano who has no idea when or where he was bitten by a tick because, like many other patients, he never saw a tick on his body or developed a rash of any kind. Although he felt unusually warm and exhausted much of time, Romano wrongly assumed it was because the weather was often hot and humid. “Since I didn’t own a thermometer, it never occurred to me to take my temperature, though I did go straight to bed after returning home from my part-time job because I had zero energy.” It wasn’t until he began to excessively bleed when he nicked himself shaving that Romano finally sought medical help – and not a nanosecond too soon! Upon his arrival at Ellis Hospital in midJuly 2020, the critically ill Romano was admitted to ICU where he was initially suspected of having COVID. Only after an infectious disease specialist was summoned did it become known that the patient had a potentially fatal tick-borne bacterial disease called Babesiosis. (The latter is caused by an infection with Babesia, a malaria-like parasite that attacks red blood cells.) “To be honest, I don’t remember much about my hospitalization because I was out of it so much of the time due to the high fevers of what I later learned had been around 104 or 105 degrees. What I do vividly recall is that at the time of my discharge in early August 2020, I required visiting nurses and physical therapy services in my Ballston Spa home because I was initially so weak and disabled. Only gradually over a period of two months did Romano progress from a walker to a cane before finally taking his first steps without an assistive device. “I’ll never take my health for granted again and hope after reading my story others will take tick-bite prevention seriously because a few simple precautions can prevent a lot of suffering,” he says.
Ballston Spa Librarian Andrea Simmons and husband Brian with sons Josh and Zac. Photo provided.
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 their younger son’s ear several years ago. “Both Zachary and his older brother Josh were – and still are – avid soccer players,” noted Simmons. “On this occasion we had stopped at a store on our way home from a sports field, when I happened to glance down at Zac, 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 removing it from his ear.” The couple rushed to the nearest urgent care where it was safely removed, and they were provided 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 outdoors,” says Simmons, whose family members continue to take tick bite prevention precautions and do thorough skin checks after 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 Andrea Simmons to recommend books on the topic, her top picks include:
Books for Adults/Teens:
1. Lyme Disease, Ticks & You, by Shelley Ball 2. Recovery from Lyme Disease:
The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne
Illness, by Dr. Daniel A. Kinderlehrer 3. Bite Me: How Lyme disease stole my
childhood, made me crazy and almost
killed me (memoir) by Ally Hilfiger
Books for Children & their Caregivers:
1. Lyme Disease: The Beginners Guide on how to treat Lyme Disease, by Dr. Randall Ramaiah 2. Mylie's Lyme Story, by Alexandra Castellanos 3. When Your Child Has Lyme Disease: A Parent's Survival Guide, by Sandra K. Berenbaum
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
Brandi (nee 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, who in March 2022 addressed a global conference on Lyme disease and other tick-borne illnesses, 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 transformation from debilitated Lyme victim to tireless crusader for change did not happen overnight. To better appreciate Brandi’s inspiring story, one needs to rewind to just over a decade ago when the Saratoga Springs High School Class of 1995 alum 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-yearold 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. Notable accomplishments included cofounding the Dean Center for Tick-Borne Illness at Spaulding Rehabilitation Hospital near Boston. The multidisciplinary center specializes in the treatment, rehabilitation and recovery of individuals suffering from persistent tick-borne illness. The story of Brandi, who continues to serve as an active Advisory Board member for the first of its kind center, has since 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, 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.
Read the full story on SimplySaratoga.com
Brandi Dean. Photo courtesy of Bethany Colavincenzo for August and Iris Photography.
An excerpt from Ann’s Q+A with Brandi…
A few years ago, my son Rylan gave a speech. As he shared his sentiments below, I cried. It was in that moment that the guilt of not being “supermom” during the years I was sick was lifted… “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 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 them.” - Rylan Dean, March 2020
Keep going...
Former competitive tennis player became Lyme activist and advocate while dreaming of walking to her mailbox without a cane
As a hard-driving competitive tennis player, Linda Reeves prided herself on bouncing back from adversity both on and off the courts. But the Ballston Spa High School alum, whose early educational blocks had been cemented in Burnt Hills, reluctantly hung up her racquet six years ago after her body was invaded and viciously attacked by an invisible opponent named Borrelia burgdorferi. Better known in scientific circles as the bacteria that causes Lyme disease, the microscopic pathogen ultimately manifested in myriad excruciatingly painful and debilitating symptoms that left Linda socially isolated and emotionally devastated. Linda’s life changed dramatically in 2016 when suddenly -- literally overnight -- she was unable to walk and couldn’t figure out how to sit in a chair or step outside her front door. After 18 grueling months of countless doctor appointments and blood tests, unimaginable burning pain, overwhelming fatigue, and cognitive decline, she was finally diagnosed with Lyme disease in 2018. Linda had taken an early retirement in 2010 from her longtime career at The University at Albany, and now her plans for that retirement were swiftly dashed. “I can honestly say that Lyme disease has stolen what I had expected to be some of the best years of my life,” says Linda, who now resides in Guilderland. Finally free of commuting to the UAlbany campus and sitting indoors at a desk five days a week, Linda’s retirement plans included her yearslong fantasy of being able to play tennis during the day. There was at long last also time for Linda to pursue her love of gardening and she soon became a Master Gardener. Tragically Lyme rendered her unable to continue to pursue any of those passions. Travel dreams that had been put off until retirement also abruptly ground to a halt when the mere act of stepping outside her front door became physically impossible. “Ironically, I had initially been thrilled upon hearing my Lyme diagnosis because I finally had an explanation for all the pain I had been enduring for so long. And, at that time, I believed that a simple course of antibiotics would end the suffering. I would be back on the tennis court and taking my beautiful long walks around my neighborhood. When that didn’t happen, and I began to learn about the complexities of Lyme disease, I realized my future was much less certain.” Her own education about Lyme disease began when Linda met Lyme Action Network President and co-founder Christina Fisk at a Lyme awareness event in 2018 at The Crossings in Colonie. “Discovering that I was not the only one on the planet who was experiencing this very same healthcare nightmare was an unthinkable revelation. I often refer to Lyme disease as The Silent Epidemic and The Best Kept Secret in Town. Once people contract Lyme disease or another serious tick-borne illness they are absolutely shocked by the reality and scope of the problem. You realize you are now living in a kind of Twilight Zone.” Only after she began reading everything that she could about Lyme and tick-borne disease and viewing online presentations by Lyme specialists did Linda summon the strength to blaze a recovery trail that would include advocacy and activism efforts she could tackle without leaving her home. From organizing educational events in her community, to writing letters to the editor and opinion pieces for Capital Region newspapers, to participating in Zoom meetings and virtual conferences, Linda has helped to educate legions near and far. Notable recent endeavors have included participating in the February 2022 Center for Lyme Action Advocacy Day — meeting virtually with Congressional staffers and members of Congress including US Senators Kirsten Gillibrand and
Former competitive tennis player Linda Reeves is now a Lyme advocate and activist. Photo provided.
Charles Schumer, Congresswoman Elise Stefanik and Assemblyman Paul Tonko. Linda was able tell her story and advocate for increased Federal funding for better testing and treatments for Lyme disease patients. “I felt privileged to be part of such an important event,” she reflects. Given the devastating impact Lyme disease has had on her life and all she has come to learn, Linda’s advocacy work on behalf of millions of Lyme sufferers has become her life’s purpose. “I cannot accept the status quo of Lyme disease, knowing what it has done to far too many lives,” insists Linda, whose recent outreach initiatives additionally included serving as both an inspiration and a guiding light for this Saratoga Family wellness feature.
Meanwhile,
a March 2022 piece Linda penned was published by the Albany Times Union and posted by internationally acclaimed Lyme expert Dr. Richard Horowitz on his popular Facebook page. Linda was “incredibly honored” when the renowned Lyme expert agreed with her summary of the parallels of Chronic COVID and Chronic Lyme and shared her writing with his many followers.
