How I Found Positivity as a Lyme Disease Warrior
Guest post from Alex Moresco, Lyme disease patient, advocate, and owner of A Morseco Public Relations.
For those of you reading this that I have not yet had the pleasure to meet, my name is Ali Moresco, and I have had neurological Lyme disease for five years.
Since being diagnosed with a tick-borne illness, I have had the privilege of getting deeply involved with the Lyme community - hosting the In The Lymelight Podcast, advocating socially and politically for patients and families, and joining forces with Global Lyme Alliance to raise over $350,000 to support tick-borne illness research.
In honor of Lyme Disease Awareness Month, Ranger Ready asked me to share my story and I am delighted to do so.
Five years ago my world was turned upside down overnight. I currently live in Chicago - I am a city girl at heart who has rarely spent time in wooded areas. A little over a year into dating my now husband, I was invited to go to Northern Michigan with his family. We spent a week surrounded by woods; beautiful tall trees, willowy grasses, and friendly wildlife. It was essentially a hotbed for ticks.
I had never heard of ticks or tick-borne illnesses, and I didn’t know how to take preventative measures - like applying Ranger Ready Repellents or wearing full-coverage, permethrin treated, white clothing.
In the week following my trip, I began to experience flu-like symptoms that would go on to last for months, and which then evolved into an auto-immune disorder. Like many Lyme patients, I went through two years of medical testing with every type of specialist imaginable, to no avail.
At 22, I had flu-like symptoms, intense joint pain and began to lose my memory, vision, hearing, and my ability to swallow. While I was once a strong willed, ambitious go-getter, I found myself essentially bedridden with no end in sight.
I was eventually told by a prominent Chicago endocrinologist that my illness was "all in my head” and that I needed to take a break from work to “de-stress.” At this time in my life, I had founded my namesake public relations firm in Chicago, and was devastated when my brain could no longer keep up with my clients’ needs.
I was in my third month of my “mystery illness,” and my general practitioner refused to test me for Lyme disease. It would take me more than two years to eventually be tested for Lyme disease and diagnosed correctly with tick-borne illness.
If I had been tested at the early stages of my infection, I could potentially have avoided the last five years of hardship.
I was relieved to finally have an answer to my failing health, and cried in relief. When I was diagnosed, I had no idea what lay in front of me, or that this illness would go on to positively impact my life.
Shortly after being diagnosed with Lyme disease, the injustices that Lyme patients face reared their ugly head. Sadly and wrongfully, Lyme disease is still hotly debated in the medical field. Physicians are not adequately educated to look for, diagnose, or treat Lyme disease, often believing that it cannot live in the body past 30 days or that it does not exist, period.
In 2017 I had the opportunity to write for SWAAY and my thoughts then still resonate in 2020:
“Most battling Lyme do not have medical treatment covered by insurance and spend thousands of dollars every week to get the care necessary to stay alive, including myself. When I talk about my battle with Lyme, as horrible as it may be, I always say that I am one of the lucky ones because I am able to afford treatment. Most cannot and suffer the long-term consequences of untreated Lyme disease that can tragically end in death.”
After the tragic passing of Senator Kay Hagan of a tick-borne disease, Powassan virus,
we now have politicians working to change the narrative, like Representative Dan Swanson, Representative Karen Whitsett, and Senator Susan Collins.
After having no choice but to take a step back from work to focus on my treatment, I refocused my efforts on fundraising initiatives, advocacy, and lobbying for political change. While my illness temporarily took away my career, it brought me to my true passion of helping others. Spending months strategizing how I could help my new community, it came to me that I could leverage my expertise in public relations, events, and social media to bring awareness to the battle against Lyme Disease.
And this is where the positive gains from my illness come in. After researching what advocacy and research groups existed to help those living with Lyme, I connected with Global Lyme Alliance.
Global Lyme Alliance is the leading 501 (c)(3) dedicated to conquering Lyme and other tick-borne diseases through funding innovative research, offering effective education and awareness programs, and advancing, through science and data, reliable diagnosis, treatment, prevention, and an eventual cure.
At the time, GLA had not yet expanded outside of the East-coast and I knew there was a golden opportunity to make a huge impact. I blindly emailed GLA, and soon after an email from their team popped up in my inbox.
I quickly connected with another Lyme disease patient and new volunteer for GLA, Kasey Passen. Kasey graciously took me under her wing and taught me about simple things that helped her in treatment - cupping, epsom salt baths, digestive enzymes, and more. Kasey was the first person I met that also had Lyme disease and, for the first time since my diagnosis, it made me feel not so alone after I had lost many friends who were not so understanding of my new limitations.
Kasey and I would go on to co-found GLA’s second largest annual event, The SubLyme Soiree. The SubLyme Soiree brought together Chicago’s top chefs to cook a gluten and dairy free dish for attendees. The event is often as "electric,” and the feeling of camaraderie, passion, and positive energy in the air is contagious.
Heartbreakingly, Kasey passed away from her battle with tick-borne illness in 2018. Despite my very poor memory due to neurological damage, it is a day that is burned in my brain. As strange as it may sound, I still feel her presence at times and know that she is guiding our community as she did for so many years on Earth. The third annual SubLyme Soiree was held in her honor, with proceeds going to one of her passions - a neurology and Lyme disease research grant in Sweden through GLA.
In 2020, I have had the pleasure of working with GLA for three years and have founded two signature events in Chicago - the “SubLyme Soiree” and “Breakfast and Conversation.” One thing that amazes me about this community is how selfless our advocates are- thus far. Ally Hilfiger, Erin Walker, Jimmy Walker, Jesse Ruben, Crystal Hefner, Jordan Younger and Tori Piskin have all donated their time to raise funds for research.
That is special.
Many direly needed Lyme disease fundraising events have been postponed or cancelled, including this year's Brunch and Conversation and the fourth annual SubLyme Soiree. In lieu of a physical Spring event I will be hosting a digital Conversation and Cocktails to help raise funds for critical tick-borne illness research. I would love for you to join us, and you can do so, here.
As the years of peeling back the many layers to my illness have gone by, my tick-borne illness has triggered other diseases such as dysautonomia (POTS) and Specific Antibody Deficiency (SAD). We now know why after years of treatment, I was not substantially improving.
In the Fall of 2019, I was approved for IVIG therapy for my SAD. This would be the first thing in three years of active treatment that would make me begin to feel substantially better. Through the guidance of Dr. Steve Meress at Fox Valley Wellness and supplemental support of Dr. Casey Kelley at Case Integrative Health, I finally started to see small improvements in my day to day life through western and functional medicine.
I know that I still have a long road ahead of me, but day by day I am accepting my “new normal,” and feel incredibly grateful for simple pleasures like going out for lunch with my husband, helping my mom cook or taking my service dog, Scout, for a walk outside.
Two years ago, I could never have done even the simplest of these activities.
Growing up, my mom always echoed the saying “say little, do much.” It has stuck with me to this day. When I was bedridden, could neither “say little” or “do much.” As I feel increasingly well, my greatest joy is expanding my reach into the Lyme disease community to bring us together. I truly believe that if even just one person can practice prevention and avoids my journey with tick-borne illness, it is well worth it.
As Erin Walker wrote in her previous Ranger Ready post, being tick aware is something that everyone can benefit from no matter your age, race, location, or income. No person is immune to the everlasting change of a tick bite; all it takes is one bite! Prevention is key. Please join me in supporting Ranger Ready’s mission of protecting future generations from tick-borne disease by spreading awareness and education about Lyme disease.