“A cursory google search of ‘lyme disease’ doesn’t tell you much, but that’s exactly what I raced to do when I hung up the phone with my very concerned doctor on a cold wintry day in my tiny New York apartment. I had recently graduated from NYU Tisch School of the Arts, excited to move full steam ahead with my music career. But instead of making my dreams come true, I had spent the last year lying incapacitated on my couch, unable to find the energy to even cook or shower.
Google provided me with a laundry list of physical maladies – rash, fatigue, flu-like symptoms, joint pain – followed by the word ‘common.’ A scroll through WebMD informed me in most cases all that was necessary was to take a round of Doxycycline for a few weeks and all would be back to normal. I wondered why my doctor had such a grave tone when she gave me the diagnosis, this sounded like no big deal at all. There was finally a name and a cause for the mysterious illness that had wrecked my life for the past year plus, and it was all going to go away with some antibiotics! I felt incredibly hopeful and optimistic, certain my old life would be returning in no time. Boy was I wrong.
I’ve had autoimmune issues dating all the way back to 2008. No doctor was able to pinpoint exactly why, but I was no stranger to restricted diets, copious amounts of supplements and specialist visits. Even though my life was a bit different than that of my friends, my health never really got in the way of anything I wanted to achieve. I was an ambitious and driven teenager, focused on graduating at the top of my class in the very academically competitive Stoneman Douglas High School in Florida. I juggled this along with several after school activities relating to my music. I was a typical Type A person who knew exactly what she wanted and how she was going to get it. My whole life was mapped out and nothing was going to stop me.
Everything was going exactly according to plan when I was accepted into NYU Tisch for college, and even more so when I graduated a year early, eager to work full time on my music and embark on tour for my recent EP. Very shortly after graduation, as if my body were simply just waiting for me to finish my schooling, my health started deteriorating quickly. I pushed through, because nothing was more important to me than my career. One morning, when I was riding the subway, I started to feel a little dizzy. If you’ve never ridden the N line between Queensboro Plaza and Lexington Ave/59th Street during rush hour, consider yourself lucky. The train is packed like sardines and there is quite literally nowhere to go. As we crossed the East River I started to lose my vision, and could barely breathe. I had no idea what to do as I physically could not move. When the doors finally slid open at Lexington Avenue, I spilled over onto the platform packed with hundreds of commuting New Yorkers, and couldn’t even make it to a bench. I sat on the ground near a stairwell until my breathing and vision slowly returned to me. It was a wakeup call- I finally understood what was happening to me was serious. It had to be my priority.
I bounced around from doctor to doctor, most of them dismissing me with ‘normal fatigue for someone of my age.’ All sorts of random ailments I had never had before kept surfacing. For instance I recall a vocal lesson with a new instructor I was eager to impress but I could hardly make it through ten minutes of simple vocal warm ups because I couldn’t breathe. A few days later I was diagnosed with asthma which had never been an issue before. I used to be a vivacious and motivated girl who was full of energy and strength, but suddenly I had become so pessimistic and incapable of simple tasks. I went from being the girl who had it all together, to the girl stuck in her bedroom watching everyone else move on. A career in music no longer felt possible. A career in general didn’t feel possible – I couldn’t even leave my room. Doctors kept telling me it was all in my head, and even many people close to me didn’t take it seriously. I had no idea I had an actual illness with a name and so I truly started to think all this was my fault. I genuinely believed I had become lazy, unmotivated, and weak. My mind became an incredibly dark place, and for once I didn’t know how to fix it.
My mom, who was absolutely my rock throughout this whole process, came across a functional medicine doctor in New York and got me on a waitlist. When the appointment finally came, the doctor questioned me for hours about my medical history and symptoms. I could barely remain awake, present, or focused enough to answer. I hardly remember the visit. She suggested testing for Lyme disease, and was the one to ultimately call and inform me my test had come back positive both for Lyme, as well as for Babesia, a commonly occurring co-infection. We tried antibiotics as well as some simple herbs, but my immune system was almost entirely shut down by this point. I was only getting worse. My doctor recommended I go back to my roots, and consider Ayurvedic (traditional Indian medicine) treatments to help alleviate my symptoms.
I was referred to an Ayurvedic doctor in New Mexico who I’m thrilled to say has single handedly changed my life. It was a long and arduous process of course, nothing changed overnight. I had to completely alter my lifestyle – there are very few foods I can eat, and I take 50+ supplements a day. Nothing about this treatment was easy, and it’s very difficult for the people around you to understand when you suddenly have to say no to so many things. But even just within months I began to see a huge difference. And it’s only gotten better from there.
My initial google search mentioned a few of the physical symptoms but in no way prepared me for the mental ones. I didn’t know along with headaches and dizziness I’d also have memory loss and severe brain fog, or I’d have to reread one simply written paragraph five times over before I even began to comprehend what it said. It didn’t tell me how common depression and anxiety were with a co-infection like Babesia. It didn’t tell me I’d have to move back home to Florida and abandon everything I had built in New York. It didn’t tell me my whole life as I knew it was about to change. For that reason, writing about Lyme is never easy for me. When I think back to the girl I was before this happened, I feel like I’m talking about an entirely different person. I’ve spent the last year of my life recovering and rebuilding and am ecstatic I’ve been able to find my way back to my music career, something that once seemed way outside the realm of possibilities.
I have found tremendous comfort and support within the Lyme community online, and I hope by sharing my story I can provide that same feeling for someone else. Lyme is a disease that can affect anyone, and it’s steadily on the rise. I myself wasn’t very familiar with Lyme before I had it, and I find even people close to me don’t really have an understanding of what this often oversimplified illness feels like. This is my specific story with Lyme, but it affects people in so many different ways. This is a very long story short, but I hope it can provide some insight as to what it’s actually like to go through something like this. I am very grateful to Love What Matters for providing people like me with an outlet to share our journeys, and to people like you for taking the time to read them! Lyme advocacy has now become a big part of my music, and if there is anyone out there who might be going through something similar, please don’t hesitate to reach out!”
This story was submitted to Love What Matters by Sonali Argade from Parkland, FL. Follow her on Instagram here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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