Lyme has been no ordinary illness for me. But then again, I don’t think there is an ordinary way to get sick. This battle has stripped my life from me and pushed me beyond the limits I thought I had. I had a preconceived notion of what this disease was, and at the very least I was incredibly wrong.
I would love to write down my life story and show you the ups and downs of it all. However, this battle has been most of my life. I don’t know anything else. I thought Lyme was a physical illness that led to achiness and nothing more. I am a different story. This is a story of Lyme disease removing my functioning mind and leading me down a 20-year path of madness. Along with my illness’s madness and horrors, it is a story of hope.
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Part I: The Physical
I was always a nervous kid. A perfectionist from the start. Tantrums from coloring outside the lines to anxiety in school for the most trivial things. This was my normal. I never broke the rules, had a lot of friends, and was well-liked. I was even voted class clown in my high school graduating class.
Truth be told, I have no recollection of when I first got Lyme disease, nor do I recall being bit by a tick, which is the case for 40% of people who have this disease. However, looking back, the symptoms have been present for at least 20 years. It’s a little scary to think about considering I am only 29 years old at the time writing this.
At about nine years old I remember having incredible pain after waking every morning in the bottom of my feet. My family and I chalked it up to growing pains. This made sense considering I am a tall guy, I’m about 6’5” now. By the time middle school came around, my knees were always hurting. I remember telling a baseball coach I couldn’t run because “it feels like spikes are being driven through my kneecaps.” My coach, like most, thought I was complaining about having to run. He must have thought I was lazy. To be honest, I was convinced I was too.
Along with my foot and knee pain, I was struggling with my bowels. I still struggle with this. At first, it was funny to my friends. My coping mechanism has always been humor. I would defecate in my pants more frequently than anyone I’d ever met. I would make a joke out of it, and it would then become just another funny story.
There would be no warning as to when I would have to go. I would be fine and within 30 seconds I would need to sprint to the bathroom. It was ridiculous. I was told it must be my anxiety.
Amidst all these physical symptoms, I was a Ford Model in Manhattan, able to do well in college and have plenty of friends.
As brutal as these physical symptoms were, they were manageable. As my story continues, you will see the mental symptoms were not.
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Part II: The Mental
Although my physical symptoms were able to be managed, my world was rocked by the feelings I began to encounter in high school. I mean, hey, high school isn’t easy for anyone. My depression started when I was 14 years old. It was really the icing on the cake. I had borderline debilitating anxiety for as long as I could remember. Adding this to my problems was what put me over the edge.
That year, my freshman year in high school, was the first time I came to anyone about it. To say the least, it didn’t go well. I had a health teacher that told us to keep a journal and if we ever wanted to ask questions, we could write it and submit it to her. Sounds like a good idea in theory. It wasn’t.
I wrote, “I know I am a happy kid, but I get incredibly sad sometimes.” I wasn’t going to spill my guts in this journal, but I figured this was just enough to be the catalyst to start a conversation. The response I got back in red ink was this, “You seem happy enough, I think you need to reconsider how you feel.” I was devastated. Aside from this being an almost comically bad answer to a child that is clearly reaching out for help, it made me think I was crazy. Or lying. This horrible response made me question my own feelings.
This became a theme in the years following. I was a popular, good-looking, funny kid. People I vented to would just tell me, I have everything, there’s nothing to be depressed about. These responses made me feel like I was making it up.
As time went on, things got worse and worse. I was depressed and became a shell of myself. I was able to put on the façade of the happy-go-lucky guy and people bought it. Meanwhile, I would go home and cry myself to sleep every night. My anxiety made me quit baseball, which was something I loved.
By the time high school ended, I was the class clown, homecoming king, most likely to be famous, and horrifyingly depressed. After high school, I chose to stay home for college due to my anxiety, while my two best friends went away. I got a job at a bakery during college and before my first day, I had my first real thoughts of suicide.
My anxiety consumed me, the panic attacks lasted hours on end and led me to a sort of psychosis. I told my parents, whom I’ve always had a very open relationship with, and had my first five-day stint in a psychiatric hospital. This would be the first of four times I was admitted.
Of these four stays, I always felt like the normal guy in the nut house. Then again, I was there too, so I supposed I was also a little nutty.
All throughout my twenties, I was battling my constant panic and depression. I began to binge drink. I couldn’t walk out of bars on my own. I told people it was because I wanted to have a good time. The truth of the matter was that I wanted to have a break from thinking. It was the only time I felt like myself. My true self.
By 25 I was sober and tried to believe drinking was my big problem. After I stopped drinking it would be smooth sailing.
Wrong.
The panic never let up. After I somehow graduated college with a business degree, I felt lost like most college grads. My friends were back in town. I genuinely think without my parents, brother, cousin, and these two friends I would surely be dead.
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Part III: Work
My panic attacks were strongly triggered by work. I have had over 12 full-time jobs. I am very charming and seem put together in interviews. My perfectionism allows me to excel in all my positions until the panic sets in.
I would have panic attacks that would last over six hours at a time. I would crap my pants, hysterically cry, and become very suicidal. I have been on 30+ medications treating Bipolar Disorder, Borderline Personality Disorder, Schizophrenia, and more that I can’t even remember. Therapy didn’t have any impact on me.
Whenever I was in a psychiatrist’s or psychologist’s office, I always had the feeling they had no idea what was wrong with me. I would try to explain, “I know what to do, I just can’t.” I don’t think they believed me, and if they did, they didn’t know what to do.
Every failure in my professional life would lead to a three-month suicidal depression. A feeling of absolute failure and not understanding why I was so broken. I just wanted to be normal and live a normal life. I don’t want to be a millionaire; I just want to be able to go to work like anyone else.
After probably my fifth or sixth failure, I broke up with a long-time girlfriend and attempted suicide when I was 24 or 25. Hell, maybe I was 26. These years were so painful, I tried for a long time to block them out.
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Part IV: Alternative “Cures”
After convincing myself nothing would help me, I knew I didn’t want to die (that’s where I thought my life was heading) so I decided to think outside the box.
First, I went to CBT (Cognitive Behavioral Therapy) which didn’t work. Then I went to ECT (Electro-Convulsive Therapy) and this also didn’t work. ECT, to me, is just a nicer way to say shock therapy.
After these two things didn’t work, I went to Sierra Tucson, a mental health rehab in Arizona. Overall, it was a great experience but also wasn’t a fruitful endeavor. After that, I tried TMS which is some kind of magnetic stimulation to the brain, I don’t even remember what it stands for, and clearly, this didn’t work either. After these heartbreaks, I thought maybe I need to think even further outside the box.
The first alternative I tried was psilocybin mushrooms. I tried micro-dosing and just got high after that didn’t work. Then marijuana. Marijuana helps me sleep but provided no help for my panic attacks because you can’t really have a panic attack at work and light up a joint.
The most extreme measure I took was going to Costa Rica and trying Ayahuasca. For those of you who don’t know what this is, you’re not alone. After a lot of research, I stumbled upon this “medicine.” It is one of the most powerful psychedelics known to man and there are a lot of success stories curing people’s depression. At first, I thought it worked for me, but after two weeks of bliss, I was crying in my room, suffering another panic attack.
The most important measure I took was going to Ketamine treatment. Don’t get me wrong, this didn’t work either. However, this doctor told me, “If this doesn’t work for you, I think it would be a good idea to see a Lyme Disease specialist.” He asked me to see my stretch marks, asked if I had joint pain, pain between my shoulder blades, and night sweats. I had no idea why he was asking me these questions, but I went with it.
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Part V: Lyme Diagnosis
I live in New York and the ketamine doctor I saw referred me to a doctor in Connecticut which is super inconvenient, but I was willing to try anything. He said this was the best doctor I could see to possibly get to the bottom of my problem. When I first met him, I was very skeptical. “How could a tick cause all of this?” I thought to myself. While these thoughts ran through my head, I figured this would be worth a shot.
He clinically diagnosed me right away before the blood results came back. He gave me antibiotics and said if I start to feel worse, it means I have Lyme Disease and the medicine is working. It was working because within days I was really feeling horrible.
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Part VI: The Detox
At first, it was exciting! I called everyone I loved and let them know I was feeling bad so things must be working. I finally found out what was wrong with me. It was like a weight was lifted. However, this feeling of elation didn’t last for long. Feeling like hell soon got worse.
In the research I had done, it says that detoxing with antibiotics will feel far worse than the symptoms you feel during everyday life. All I could think was, “How could it be any worse?” Well, I was wrong. I have been detoxing for 4 months and counting.
Over these past 4 months, I have had ups and downs, I was warned that healing isn’t in a straight line, but the ups and downs have been more than drastic. There are weeks when I feel great and can get back into the gym and carry on with my everyday life. However, after a great week, I am normally exhausted and in bed for a couple of weeks. I’m unable to go to the store and do the smallest things like get food for myself.
Luckily, I have a great support system from my amazing girlfriend, my parents who have been with me every step of the way, and my friends whom I cannot thank enough.
I will feel great and then suicidal in the blink of an eye. I now have arthritis in both my knees. Getting up the stairs in my house has become a chore. I even had to ask a friend to help me up the stairs one time.
My journey is not over, but the overarching theme is to never give up. I have tried everything and wanted to give up repeatedly. Looking back, I have an entirely new opinion of myself. I always thought I was a cowardly quitter. Now, I view myself as a courageous man who never gave in. Over 20 years of struggle have led me to this point. I am incredibly proud of my perseverance and willingness to get better.
Whether you have Lyme Disease or a different illness either mental or physical, please don’t give up. There is a light at the end of the tunnel. There are days I can’t see it, but when you do, it is worth the struggle.
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This post was previously published on medium.com.
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