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.
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 the 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.
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 picaridin-based 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.)
“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 mid-July 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.
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 years-long 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 Charles Schumer, Congresswoman Elise Stefanik and Assemblyman Paul Tonko. Linda was able to 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.
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.
The letter written by Linda reads in part: “While not living with (Chronic COVID), I have a particular empathy for the people profiled in (the Times Union) piece. There is another large population that has been suffering in silence for years, even decades. Those of us (who are) suffering with chronic Lyme disease face many of the same challenges. We feel the same sense of abandonment once felt by the AIDS community and now by those left to manage chronic COVID. Every day we face severe brain fog, overwhelming fatigue, depression, and joint and muscle pain. And, because of the poor quality of current Lyme testing, our symptoms are often not believed and simply dismissed as psychosomatic as also expressed by the people interviewed for the long COVID story. People with chronic Lyme often must give up careers because of the physical disabilities they now face and many of our dreams have also been denied. Thousands of Times Union readers are looking for the same attention that is rightly being given to chronic COVID, the same acknowledgment that our symptoms are real. There is a tremendous emotional toll associated with chronic Lyme just as there is with chronic COVID, having seen our lives ‘ruined’ as well.”
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.
-As told to Ann Hauprich by Linda Reeves
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 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 a body part that our son would need 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:
Books for Children and their Caregivers:
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-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. 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.
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
The following Q & A between Saratoga Family contributor Ann Hauprich and Brandi Dean, who maintains a residence in her cherished Saratoga County hometown, as well as in Massachusetts, spotlights more of her extraordinary ongoing humanitarian “search and rescue” mission.
QUESTION: Your Lyme journey as documented in the August 2016 edition of Good Housekeeping magazine has been extraordinary. What impresses me most is that you have become a powerhouse of example for others who are coping with tick-borne illnesses. Kindly share highlights of the message you will be presenting at the Global Lyme Alliance virtual conference:
ANSWER: Our team will be talking about the financial burden that many people with Lyme experience and we will touch on our mission to raise funds for people who are in need of financial assistance to pay for their medical treatments. We will also share our personal stories and how they have provided hope, strength, and purpose in our lives.
ANSWER: 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 had a 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 need 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.
QUESTION: You mentioned enjoying hearing stories from your Baby Boomer Mom (nee Barbara Harrison) about her childhood adventures with friends in a Ballston Spa suburb that was in close proximity to woodlands -- long before anyone had ever heard of Lyme disease. 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?
ANSWER: I’d spend hours with my friends exploring the forest behind our homes in the Geyser Crest area, a small neighborhood in Saratoga Springs. 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 in 2011, 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. My youngest son, Finn, recently recovered from a frightening case of PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) triggered by Lyme and Bartonella. 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.
QUESTION: 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 spring air?
ANSWER: 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 must 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 their bags and gear and leave them in one area of our home to avoid bringing ticks into the residence.
QUESTION: Looking back over the past decade, what has been the most rewarding part of your public education and advocacy initiatives?
ANSWER: 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 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
QUESTION: What has been the most challenging part?
ANSWER: 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.
QUESTION: How can Saratoga Family readers assist in your quest?
As Mother Nature beckons youngsters to spring into warm weather action playing and exploring in the great outdoors, it’s vital for parents and caregivers as well as teachers and coaches to be mindful of the latest science-based tick bite prevention and medical intervention guidelines.
According to SUNY/Adirondack microbiology professor Holly Ahern, whose distinguished credentials also include cofounding Lyme Action Network (LAN) in New York’s Capital Region and serving as Scientific Advisor for Arizona-based Focus on Lyme Foundation, a significant proportion of patients diagnosed with Lyme will develop persistent symptoms that can become disabling. Other diseases that can be transmitted by ticks can cause chronic illnesses as well, asserts Ahern, who has worked tirelessly for more than a decade with LAN cofounder Christina Fisk to boost awareness of how life altering a tick bite can be.
The dynamic duo joined forces after discovering they shared a common bond in that young members of their families had endured long and difficult journeys from the discoveries of their respective tick bites to diagnosis, treatment, and resolution of their symptoms.
In a quest to help educate readers during Lyme Disease Awareness Month, Ahern -- who is additionally the author of nationally published textbooks on microbiology, cell biology and molecular biology -- recently engaged in a Q & A with Saratoga Family contributor Ann Hauprich. The following excerpts from that exchange clearly reveal both Ahern’s scientific knowledge and her empathy for the suffering that tick-borne diseases inflict on many patients and families.
QUESTION: Your Lyme Action Network responsibilities include working closely with members of the local community as well as with tick-borne disease experts and advocates from across the nation to drive policy change at state and federal levels. When – and why – did you decide to devote so much of your life to this cause?
ANSWER: When my daughter Kaleigh was a teenager, she was bitten by a tick at a horse show. We found the tick on her the next day. It had been attached to her for less than 12 hours. Although she was examined by her doctor, the bite was dismissed as a health concern. We were advised to go home, and if a rash, fever, or flu-like symptoms occurred, to return for an antibiotic. Since she did not develop a rash or any other symptoms, the tick bite went untreated. After setting records and achieving All-American in swimming her freshman year in college, Kaleigh came home for a long weekend. On her first night home, she had a fever and complained of aches and pains. By the next morning, her symptoms had escalated. Over the next several weeks, she suffered with blinding headaches, a heart arrhythmia, overwhelming fatigue, and sensations like electricity running up and down her arms and legs and making her muscles feel like they were on fire. The left side of her body went numb. Over the next few months, she was referred to an infectious disease specialist, a rheumatologist, a cardiologist, an endocrinologist, and a neurologist, who actually suggested that because she was a “girl” she might be exaggerating her illness. Not one of them considered that a tick-borne disease could be the root cause of her illness. The journey from tick bite to diagnosis, treatment, and resolution of my daughter’s symptoms was long and difficult. We were marginalized by a medical system overly invested in a narrow, outdated medical perspective on Lyme disease that hasn’t changed in over 30 years. We had to navigate an insurance system unwilling to reimburse for treatment of her illness, because the standard of care for Lyme disease does not provide options for patients with long-lasting symptoms. We had to find ways to pay for the effective treatments that ultimately returned my daughter health. Once my daughter was on a path toward recovery, I began giving educational presentations to the public to raise awareness of just how life altering a tick bite could be and became connected to many others with similar experiences. I guess you could say that I was recruited to Lyme disease advocacy by a tick.
QUESTION: What are some of the most common myths and/or misconceptions that exist among the general public concerning Lyme and tick-borne diseases?
ANSWER: The narrative that comes from the medical community and public health agencies is that Lyme disease is “hard to catch, and easy to cure.” In fact, since Lyme is the third most common bacterial infection on record, it is not “hard to catch.” The disease is also not “easy to cure” because the only therapeutics available, antibiotics, are only marginally effective and only in the earliest stages of the infection. And yet the standard of care for this disease has not evolved to accommodate all that is now known about the pathobiology of infection and disease. Another common misconception is that people only catch one disease at a time when they are bitten by a tick. Although Lyme disease is recognized as the most common tick-borne disease, several other pathogens can be transmitted – including other species of Borrelia that cause a disease known as relapsing fever, Babesia (a parasite that’s a relative of malaria), Anaplasma and other rickettsias, and there’s growing evidence that a bacterium that is even stealthier than Borrelia named Bartonella can also be transmitted by ticks (among other routes).These microbes are synergetic, so someone who is infected with both Borrelia and Babesia for example, may have a worse outcome than someone who only has one infection. A third misconception is the issue of ticks being the only route of transmission of the bacteria that cause Lyme disease, which I discuss in more detail elsewhere. We need research to find answers to these questions!
QUESTION: What prevention precautions should family members take before heading out to enjoy grassy meadows, sports fields, nature trails, state parks and other settings that present elevated tick bite exposure risks?
ANSWER: The first thing to consider is that ticks are amazing survivors – a recent study just published revealed that a population of ticks kept in a laboratory for 27 years remained alive despite the fact that they were given no food for eight of those years. (To learn more visit https://pubmed.ncbi.nlm.nih.gov/34897423/)
Although the conventional wisdom that spring is “tick season” and May is Lyme Disease Awareness Month, the reality is that different stages of ticks, which can all transmit diseases, occur nearly year-round in our area. In February, the first reports of people finding ticks started to show up on social media – so remain vigilant in all seasons!
You should also be alert to the fact that ticks are not only found in the woods, they can be found in your yard, at the playground where you take your kids, the park where you walk your dog, and even in urban environments. Ticks feed by grabbing on to you or your animals as you walk by, and then race to find a good location on the skin to settle down for a meal of blood. For animals, this location is often the head and neck, so check your pets when they come in from the outside. Ticks have been noted attaching to all parts of the human body, including places where you may not always check. To make yourself or your animals less attractive to ticks, bug repellants containing picaridin or certain types of essential oils can be applied directly to skin. There are others such as permethrin and DEET that can be applied to clothing – you can even buy clothing that has been pre-treated with permethrin. Pet dogs and cats that go outside, even those wearing anti-tick collars, can traffic ticks into your house, which increases your exposure risk to ticks and the diseases they carry.
A common misconception regarding tick bites is that a tick must be attached and feeding for 36 – 48 hours before you are at personal risk of acquiring a tickborne disease. Although there are a few studies showing that longer attachment times increase the risk of acquiring the bacteria that cause Lyme disease, they were done using a single type of immature tick in a controlled environment on the reservoir host for the bacteria (mice), which does not adequately model the real-world scenario of how humans are bitten by ticks. Transmission time for other tickborne microbes remains unknown, although viruses transmitted by ticks are known to be transmitted almost as soon as the tick has broken through the skin and located a blood vessel to cement itself into. If the tick is attached to the skin, you are at risk of exposure to a tickborne disease. In New York state, surveillance data compiled by the Thangamani lab at Upstate Medical Center in Syracuse shows that Saratoga County and the Adirondack region have the highest rates (40 – 50%) of ticks carrying pathogenic microbes.
QUESTION: What are the most important things family members can do upon returning home from such fresh air outings? In the event that evidence of a tick bite is observed on a family member, what actions should promptly be taken? Under what circumstances should medical attention be sought?
ANSWER: To prevent tick bite transmission of Lyme disease – check for ticks after spending time in their habitat. Here’s a great song created by a team at PA Lyme Resource, called “Tick Check” which more or less says it all: https://www.youtube.com/watch?v=M4vpi1L3nIY. If you find a tick that is attached (meaning you can’t just flick it off, you have to pull it off), remove it as soon as you see it. You can send the tick for testing – in NYS you can send them to the Thangamani Lab at Upstate Medical College (https://nyticks.org/), where the ticks will be tested for bacterial and viral pathogens and a report sent to you with the results. The data is used for disease surveillance purposes, but the result will let you know if the tick you were bitten by was infected or not, which is an indication of your own personal risk of infection. Unfortunately, in our region, the medical standard to treating tick bites is to NOT treat the bite and send people home to “wait and watch” for a bull’s eye rash or flu-like symptoms, which do NOT occur in the majority of cases. This was the recommendation that was responsible for the life-altering events that consumed my family when my daughter was bitten. The other option is to offer a single treatment with the antibiotic doxycycline which is intended to kill the bacteria before they can establish an infection. Both of these recommendations can have profoundly negative impacts on patient outcomes. If you are infected, waiting for a rash or flu-like symptoms to appear before treating increases the risk of dissemination and chronic illness. The bacteria begin the dissemination process within hours and once established in tissues, antibiotics are largely ineffective at eradicating the infection. There is also very little science to support the concept of using doxycycline as a “prophylaxis” to prevent infection – only one very poorly designed clinical study was done in 2001 and the outcomes never confirmed by other research studies. So there is no scientific evidence that this treatment actually prevents someone from developing Lyme disease, and is also problematic because antibiotics further suppress antibody production. A prophylactic single dose of doxycycline may NOT prevent infection, but it MAY prevent a positive test result and thus delay diagnosis and decrease the likelihood of treatment success.
QUESTION: What have been the most important policy changes that have been enacted since you and Lyme Action Network President Christina Fisk first joined forces on this shared crusade?
ANSWER: In New York, we worked with state legislators in both the Senate and Assembly on a bill that “prohibited the investigation of any claim of medical professional misconduct based solely on treatment that is not universally accepted by the medical profession.” This bill, which was signed into law in December of 2014, protects physicians from the time-consuming and expensive process of defending their medical license when treating patients with persisting symptoms of Lyme disease, when the standard antibiotic treatment fails. With the leadership of Sen. Sue Serino (NY Senate District 41) and other legislators in both the NYS Senate and Assembly, we were able to successfully advocate for increased funding for tickborne disease statewide initiatives. In 2017 the Senate convened a public hearing which included testimony from experts in the field, medical professionals, insurance industry representatives, patients, and advocates to explore the issue with a goal of finding effective solutions to empower patients and reduce disease risk to people who live in the state. In 2018, the Department of Health held a summit to develop a statewide Action Plan which included a 12-point TBD Collaborative Action Plan.
Link to the Action Plan: www.health.ny.gov/diseases/communicable/lyme/working_group/docs/tick_collaborative_action_plan.pdf
The Action Plan recommended formation of a NYS Lyme and Tickborne Disease Working Group to work with national experts and local health departments to review New York’s existing initiatives, and to make recommendations for future policy actions. I was officially appointed to serve on the NYS TBDWGin March 2022 and look forward to getting to work on this important public health issue here in New York.
On the federal level, we worked closely with former US Congressman Chris Gibson and other members of Congress, including Rep. Chris Smith of New Jersey, to draft a bill directing the Secretary of the Dept. of Health and Human Services to convene a federal working group to review federal efforts related to tick-borne diseases and identify gaps. This bill was ultimately included in the “21st Century Cures Act” and was signed into law in 2016.
The HHS Tickborne Disease Working Group (TBDWG) has issued reports to the Secretary of Health and Human Services and Congress in 2018 and 2020, with a third pending in 2022. The reports present findings and recommendations to guide the federal response to tick-borne disease prevention, treatment, and research, as well as how to address gaps in these areas. I was appointed to serve on this working group twice – in 2018 and 2022.
Link to the HHS TBDWG Reports: https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/index.html
Current federal legislative efforts are focused on increasing the funding available for research and other initiatives to improve tickborne disease patient access to care. For the last three years, the Center for Lyme Action, a national 501-c-4, has organized “Advocacy Days” to connect patients and advocates with their legislators. This effort has resulted in modest increases in funding over the past two years. The 2022 Advocacy Day was in March, with over 300 advocates from across the country participating.
QUESTION: Are there additional policy changes you would like to see come to fruition at the state and/or federal levels?
ANSWER: Although Lyme disease is the third most common bacterial disease in the US, and despite the fact that a significant proportion of patients diagnosed with Lyme disease will develop persistent symptoms that can be disabling, Lyme and the other diseases that can be transmitted by ticks are not considered significant public health threats and are largely ignored by the medical community at large as a cause of chronic illness. This needs to change. given the number of people who become chronically ill as a result of exposure to tickborne microbes, funding for research into “long-Lyme” should be prioritized among the governmental funding agencies (such as the NIH and Department of Defense). Congress can also act to create National Centers of Clinical Excellence for Lyme and tickborne diseases, modeled after the successful NCI-Designated Cancer Centers that exist across the country. The clinical centers would offer patients with tickborne diseases the opportunity to not only provide improved access to knowledgeable healthcare providers, but also to be included as participants in clinical studies. Two small clinical research centers currently exist – one at Columbia University in NYC, and the other at Johns Hopkins University in Baltimore, MD. Both are funded privately through philanthropic donations, so the number of patients involved represent only a very small subset of Lyme disease cases.
Understanding the pathophysiological landscape of “long-Lyme” goes hand-in-hand with a similar set of disabling symptoms that are now being observed in people infected with Covid. Note that in 2021, Congress appropriated $1.15 billion in funding over four years for NIH to support “research into the prolonged health consequences of SARS-CoV-2 infection.” As a disease with more than a half-million new cases per year where 30 – 40% of patients remain ill with debilitating symptoms, the need to investigate “prolonged health consequences of Lyme disease” should also be considered a national health priority. Research aimed at finding new approaches to diagnostics, treatments, and prevention strategies for Lyme disease is needed. Another initiative in the works is a public-private partnership between the Steven and Alexandra Cohen Foundation and the HHS to support the “LymeX Innovation Accelerator” program to strategically advance tick-borne-disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry, and government. This innovative model has been successful for kidney disease and will advance both science and medicine of Lyme disease and improve patient access to care. The Cohen Foundation has contributed their share to the project, but the federal government has not yet done so. This was one of the points advocates made to their representatives on Advocacy Day two weeks ago – fund the program. It's also imperative for NIH to fund an unbiased, systematic, and comprehensive review of ALL the science that exists with regard to tickborne diseases, but with an emphasis on Lyme disease, since Lyme disease cases make up more than 80% of tickborne diseases in the US.
QUESTION: Does a “Gold Standard” lab test exist yet for confirming the presence of Lyme and Tick-borne Diseases in a patient’s body? If not yet available, when is the soonest that such a test might become available?
ANSWER: The existing diagnostic tests for Lyme disease measure antibodies that are produced by the immune system once an infection ensues. The problem with these types of tests is that the bacteria can evade immune detection and have the ability to shut down antibody production or otherwise mess with the immune response. What this means is that the existing serological tests are not “clinically accurate.” Serological tests for Lyme disease should not be used at all during the first month or so of infection, since less than 30% of those infected produce enough antibodies to reach the limit of detection of the test. Although the presumption exists that after a month or so, sufficient levels of antibodies are produced and that the tests become more accurate, this is not true for Lyme disease. This very short-sighted perspective completely ignores how the bacteria manipulate immunity and prevent or disrupt production of the antibodies measured in standard diagnostic tests. Here’s what is a huge concern – the tests are specific for Lyme disease, meaning that if the test comes back “positive,” the patient probably has Lyme disease. However, the tests are not sensitive, which means that a negative test result truly has no diagnostic value. A person may have a negative lab test for Lyme disease, and still have Lyme disease. Likewise, a person may have a positive lab test for Lyme disease, and yet NOT have Lyme disease. So, at the moment, there is no diagnostic test that can provide the information that providers want before prescribing an antibiotic – which is whether the person is actually infected with Lyme disease or not. Why this matters is because it has been scientifically established that once the bacteria get into the body, they initiate the process of dissemination by penetrating the lining of blood vessels and traveling to tissues (the connective tissues that line the nervous system, heart, joints, and the deeper layers of the skin), where they attach and remain permanently situated. Once established, the bacteria are largely indifferent to antibiotic treatment. Disseminated Lyme disease is infinitely more difficult to treat.
So, while the standard medical mantra is that “antibiotics always cure Lyme disease” the reality is that they don’t. If a patient is diagnosed and treated with an antibiotic during the first few weeks following infection, 85-90% recover sufficiently to return to their normal life – although 36% report lingering symptoms according to data from the Johns Hopkins Lyme Disease Research Center. However, if diagnosis is DELAYED, the bacteria disseminate and antibiotic treatment is less effective, leading to escalating symptoms that may affect multiple systems – neurological function may be impaired, there may be localized or widespread body pain that can include partial body paralysis, heart arrythmias may occur and the fatigue is overwhelming. People who are diagnosed later in the course of the disease are more likely to fail antibiotic treatment and become chronically ill. Because there is such huge resistance on the part of infectious disease specialists to acknowledge that the bacteria have this superpower, and because the “one-size-fits-all” mentality that permeates medical practice these days, this population of patients (which included my daughter and millions of people like her) are marginalized by the healthcare system and are being denied access to adequate healthcare options. This is a health equity issue, and one that is being addressed by the HHS Tickborne Disease Working Group in the 2022 report. And that’s why perhaps the biggest need to improve Lyme disease patient outcomes is an accurate diagnostic test, one that can differentiate those who are actively infected from those who are not. That test does not currently exist, and this is one of the major “gaps” that all three federal working groups have identified.
QUESTION: Vaccines to help prevent COVID infections were developed fairly quickly following the arrival of the coronavirus on American shores in 2020 and its spread during 2021. What is the status of the development of a Lyme and Tick-borne Disease prevention vaccine?
ANSWER: There was a vaccine developed in the late 1990s which used a particular Borrelia antigen (OspA) which was found to be strongly antigenic. However, shortly after the clinical trials began, some participants reported development of arthritis-like symptoms and initiated a lawsuit. Although the narrative is that this side effect was “rare” – the report of the group that was convened by the NIH to investigate shows that approximately 10% (1 in 10) of participants developed the equivalent of “Lyme arthritis” following vaccination. Which is not all that rare! By 2001, the company withdrew the vaccine from the market citing poor sales as the reason. There is currently a new version of the vaccine using a recombinant OspA antigen, which is supposed to mitigate the risk of the side effects noted with the first vaccine. That vaccine is currently in clinical trials, so the data will not be available for review any time soon. There is also an upcoming preventative drug that is not technically a vaccine, but rather a “pre-exposure prophylactic” or PrEP, similar to the drugs available to prevent HIV infection. Lyme PrEPis an antibody treatment against the same target as the vaccine, which is OspA. This drug works to kill the bacteria in the tick's gut while the tick drinks its victim's blood before the bacteria can get into the human host. The problem with these approaches, and in particular reliance on OspA as the target antigen of choice, is that the bacteria turn off the OspA protein once they get into a person’s blood. So, the antibodies don’t work to neutralize the bacteria that get into you, they neutralize the bacteria in the gut of the tick BEFORE they get into you - which means there has to be sufficient amounts of antibodies circulating in your blood, for the tick to pick up during the time it’s attached and drinking your blood, for this approach to work.
Another issue is that tick bite transmission is not the only route of transmission. There are a significant number of research articles showing that maternal-fetal transmission of the Lyme disease bacteria can occur, meaning an infected mom can pass the bacteria to her baby. Perinatal transmission is known to occur, but the few studies that investigated pregnancy outcomes did not focus on what that means for the babies born to infected moms. The data gathered by the CDC which shows that Lyme disease is the third most common bacterial infection in the US, behind only chlamydia and gonorrhea which are both sexually transmitted diseases, is a strong indicator that tick transmission is NOT the only route by which humans can be infected with Lyme disease. This should be obvious to epidemiologists who investigate disease trends using the data – it makes little sense that a disease with such a huge number of new cases per year is ONLY transmitted via the bite of a tick (and only a certain kind of tick which is only found in a few regions in the US), and the tick has to be attached for two days or more before a person is at risk of getting the disease. With all those caveats – no one should have to worry about getting Lyme disease! And yet, hundreds of thousands of people in all parts of the country, even those lacking the correct ticks, are diagnosed with Lyme disease each year.
As a comparison – among all “vector-borne” (vectors are blood sucking insects like mosquitoes, fleas, and ticks) disease cases the CDC tracks, no other vector-borne disease comes close to the case numbers for Lyme disease. As a microbiologist, I can assert that the biology of blood-sucking bugs, and their relationships with the microbes inside them and how those microbes are transferred to humans during the feeding process, is complicated and transmission via this route is not very efficient. Logically, there has to be another route of transmission for Lyme disease.
QUESTION: Looking back over the past decade, what has been the most rewarding part of your public education and advocacy initiatives?
ANSWER: The most rewarding aspects include collaborating with others in the Lyme community to advocate for policy changes that will improve access to healthcare options for patients with Lyme disease and other types of chronic illnesses. This growing network now includes several national organizations that fund research, provide patient and provider education, and advocate for policy changes. We are fighting an uphill battle given all the roadblocks, but we are making progress on many fronts.
QUESTION: What has been the most challenging part?
ANSWER: I mentioned roadblocks in the answer to the previous question. The major roadblock is the resistance on the part of infectious disease medicine to acknowledge that Lyme disease is not a simple bacterial infection that you can cure with antibiotics and develop vaccines for. The bacteria that cause Lyme disease, and the ones that cause other vector-borne diseases, are remarkable in their survival ability. They manipulate our immune systems for their own purposes. They establish long term permanent infections in the hosts they infect. They are talented in their ability to resist the actions of antibiotics. Yet Borrelia is treated in the same way as other bacterial infections – with a short round of antibiotics, and if that doesn’t work it must be some other problem. The other half of that roadblock is the public health response to the disease, which follows the dogma, but not the science.
QUESTION: How can readers assist in your quest?
ANSWER: Lyme disease is a common but poorly understood disease that medicine has no answers for. Lyme disease patients have a saying – “You don’t get it, until you get it” – which is a profoundly sad statement. People with Lyme disease are marginalized and told the problem is all in their heads. Can you imagine having an invisible illness, which no medical options and little support? My short and practical advice is to support friends and family who may be struggling with the downstream consequences of an invisible illness like Lyme disease.
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