by Ali Moresco
My Diagnosis
Like many others in the Lyme disease community, it took me two years to finally receive an accurate diagnosis of Lyme disease, Babesia, Bartonella, and ehrlichiosis. I live in Chicago and am not typically attracted to the outdoors. My husband grew up in Michigan and goes to Northern MI every summer with his family, I was lucky enough to be included in this trip in our first year of dating.
I came home from the trip, and within a week, I had a rash from head to toe and flu-like symptoms that lasted for months. I went to a large hospital system in Chicago and was told there was nothing wrong with me, and then spent years being misdiagnosed with other illnesses. Ironically, a different doctor in this same hospital system would diagnose me with Lyme disease two years later.
My Symptoms
My first symptoms began immediately after my trip, I had flu-like symptoms and a spotted rash. I never found a tick. Within a few months of the bite, I was very sore and had intense joint pain. Within two years, I lost chunks of my memory at the age of 22 and could barely get out of bed.
Tick-borne illness turned my life upside down. Before becoming ill with Lyme disease, I was a thriving, ambitious, productive member of society, and within a matter of months, I was practically bedridden. Like many others in this community, I put my entire life on hold to seek treatment. Nothing prepared me for the battle that ensued after my chronic illness diagnosis.
Due to the lack of education in the medical community and not knowing to test for Lyme disease, I went untreated for so long, so I have terrible memory loss and neurological damage. I have also gone on to develop Dysautonomia and Specific Antibody Deficiency.
Something I always discuss openly on Instagram– is the fact that it is critical, and okay, to grieve your “old self.” We have to find a “new normal” when living with tick-borne disease, but that is okay!
My Impact
Honestly, I never would have imagined that tick-borne disease would go on to impact my life positively. I have found my true life’s purpose in advocacy efforts, fundraising, and lobbying politically on behalf of tick-borne illness patients.
When I was finally referred to a reputable LLMD and started to learn about treatment, I found out that there is a lack of accurate testing for tick-borne illnesses, little to no insurance coverage for those suffering, and a lack of education in the medical community. It devastated me to learn about this marginalized population, and I knew that I had to do something about it.
I started researching nonprofit organizations supporting tick-borne disease and read all the annual reports of the organizations. Global Lyme Alliance (GLA) impressed me the most. I sent a blind email, heard back a few months later, and the rest is history!
My background is PR and events, so I applied those skills to bring other GLA events to the Chicago area: first, the SubLyme Soirée, then a Brunch and Conversation, and many others sprinkled in. To date, we have had over 700 people attend our events and have helped raise almost half a million dollars, all to support GLA’s mission. This brings me a lot of joy! We also have two virtual events coming up in December to support GLA and the Lyme community. Get tickets for Lyme Warriors Live here.
Giving back to Global Lyme Alliance is a regular part of my life now, as it should be. My family and I make monthly contributions, and my father sits on the GLA board as of 2019. I also use my presence to bring awareness to tick-borne illness by advocating on behalf of GLA online and in the media. The more attention I can bring to the organization, the more community members we can help! I genuinely feel that GLA will be the organization to improve the lives and get us closer to a cure.
Global Lyme Alliance is more than an organization. It is a community that has turned into a family. Through this community, I have met some of my closest friends, all over the country, that I am so thankful for. Anything I can do to support my tick-borne illness family is what I am all about. Sign me up.
My Advice
While suffering from a tick-borne disease can be a very uphill battle, do not give up. I am in my fifth year of treatment and have finally found something that is working: IVIG therapy. You have to have hope because when you least expect it- things will start looking up.
I am always here for you. I am always happy to chat with any member of the Global Lyme Alliance community- all you have to do is send me a message!
As you may know, GLA is solely funded by donor support. Due to COVID-19, we have been unable to hold our usual fundraising events. Please donate below if you’d like to support GLA’s research, our programs, and our mission.