Looking back, I think I’ve had Lyme my entire life. On and off during my high school days I suffered from major depression and depersonalization, but never knew that was a symptom of Lyme. I am honored to share with other Lymies my story, my experience, the valuable information I discovered on a daily basis, and my recovery. I currently have almost no symptoms and am happy to be living again.
I attribute my success to God, my friends in the Lyme community, and Perry Fields. I want to encourage as many Lymies as possible, and let you know that you are not alone, and we are in this together.
When I was younger my family bounced around between New York City and Connecticut. I went into the woods all the time as a little girl, but I don’t remember ever getting bitten by a tick. I loved the outdoors. The weird part for me was that I had no physical symptoms.
When I was about twelve we finally moved back into New York City. During my teen years I suffered from major depression and anxiety. Everyone in my family felt it was abnormal for a girl of fifteen to be so anxious all the time. I later developed an onset of depersonalization for about a year and then it went away. Depersonalization is really scary. You’re completely detached from the world emotionally and feel as if you are on another planet, or possessed. But the strange part about that--looking back--is that it went away all of a sudden.
Later I attended college in Pennsylvania. I struggled with some bad times of severe depression, but like most Lymies I was bounced around from therapist to therapist. Seeing a therapist actually became a normal occurrence for me. I attributed it to being from Manhattan. Seems like everyone in New York has a lawyer and a therapist!
I think my life took a turn for the worse when I started law school. It wasn’t so much the curriculum, but the stress. I was living in Miami at the time, and doctors were baffled by my symptoms. I remember getting really bad headaches. I once passed out in a car dealership. I was holding my head and asking to be rushed to a hospital. As usual the tests came out fine.
They put me on all sorts of medicine for my headaches and depression. Later, towards the end of law school, my symptoms got really bad. I remember overnight the severe depression turning into immense anxiety. It was horrendous. I walked into work and I knew something was wrong. I was scared of people; sounds became too loud and knew I had to take some time off work.
That time off was horrible. My anxiety got worse and worse. I started staying in my house for weeks on end. Weeks turned into months. I ordered several tapes from Lucinda Basset and walked around the city saying to myself, “I am fine,” “I am good,” “I am special,” but that didn’t work. I knew how hard it would be to get out of this. That summer I tried to take the bar exam but I was so anxiety-ridden that I couldn’t even leave the house. I soon became addicted to Xanax, and my doctor prescribed it like it was candy. I needed it every second. I couldn’t live without it. Later that summer, my anxiety turned into depersonalization. I wasn’t sure if the depersonalization was a way my body protected itself from immense anxiety, but I knew I needed help.
I struggled with addiction to Xanax and knew I couldn’t be alone. I didn’t trust myself and what I was going through. Life became completely unmanageable. I walked around the city feeling like I was in a dimension beyond this dimension. I couldn’t feel anything and I was emotionally numb. The world as I knew it was gone. I felt like I was away from the world, in another dimension, and couldn’t go back.
Soon my depersonalization turned into derealization. This was more of a visual problem. Again, doctor after doctor kept giving me pills and said that I was just depressed. I went to the top psychiatrist saying, “Please help me, I can’t feel anything. Doctor, I can’t even feel this chair.” He gave me pills and told me it would get better if I just started dating. I stared at the pills, and later because of my addiction I knew I had to flush them down the toilet. There had to be another way. After much prayer, God put an angel in my life. She said it sounded like I had Lyme. I kept telling her that I felt like I was “high” all the time--almost like I just smoked marijuana or was drunk, and I hated drugs. I was such a lightweight in college. I just wanted to be back in the world. “Please God, please help me.” Later that year I had a Lyme test and it came out positive.
I took a test that showed how damaged my cognitive skills were. I couldn’t add or subtract numbers anymore. I thought this was crazy because I was a math geek in college! I cried during that entire session when the doctor asked me questions. I think I even stopped the test because my heart was so broken. What was I to do? Here I was, having graduated law school, and I couldn’t even read or add simple math. It was devastating. How was I going to pay back loans? That walk back to my friend’s apartment/couch was the longest walk home. I walked through the park and looked around at all the Manhattan mothers playing with their children. Was I even living? I sat on a bench with my head in my hands and sobbed. This was a normal day in my "groundhog's day" life.
On July 1, 2009, I sat in the doctor’s office getting my antibiotics, and I started telling the doctor I was relapsing again. I told him about horrible brain fog, derealization, heart palpitations, hotness in the back of my neck, hot and cold sweats, tingling in my hands and feet, migraines and exhaustion. He said this was normal, and then the nurses came into the room to take my blood. They were laughing and talking about what they were going to do for July 4th.
Tears welled up because I couldn't remember the last time I went out with friends or had a life, for that matter. They were also laughing at me because my veins were too small and it was hard to inject me with a needle.
That drive home from the doctor's office was the worst day of my life. The words from my doctor that “I might have this for the rest of my life” made me want to drive my car off the road. If he knew how I felt he wouldn’t want to live either. Thankfully, I was able to drive that day because my family was tired of taking me to doctors, and tired of my being sick.
A couple of weeks later was my birthday. I was broke--really broke. I knew it would take a lot of money to get me out of this. I sat in my room alone on my birthday, with no friends. Just me and a candle. I sat there holding the candle, praying to God to give me money for treatments, to give me hope, and to be there for me through all this.
After I blew out the candle, I ran to my computer and bought myself my first birthday gift, an infrared sauna from Promolife. It was perfect because it rolls up like a blanket, and here I was sitting on my friend's couch. As I clicked the button to pay, I had one eye open and was shaking. "Okay I can do this. I’ll just pay it off when I’m better." It’s funny, but I have been saying this with each treatment, and have actually been able to pay it off six months later! The power of God is amazing!
That day I knew I had no choice but to seek help and get on the right track. I started talking to Perry Fields and seeing alternative healers. Going off antibiotics was scary for me. I won’t lie. It wasn’t an easy task, but I just said, “I’m dying anyway. What difference does it make? Let me try this for six months.”
Every day for six months now I have pretty much been my own doctor. I get up and have a routine. Routines are SO important with this. It was important for me to just keep going. Even though some days I had setbacks, I prayed that what I was doing was right for my body.
Every day for the past seven months I've taken vitamins in the morning, minerals and aloe. I incorporated vitamin C IV drips, ozone water (sometimes I would drink this with my vitamins), Biofeedback machines, Salt C protocol and many others, including a parasite cleanse.
I can’t believe I'm living again. I have dreamed of this for four years. Lyme has manifested itself in me in some pretty weird ways, but I know everything happens for a reason. It’s strange, but I almost don’t want to take back my Lyme. I’m so grateful today, and hope my story will bring hope to people when life seems hopeless. My dream is to have a rehabilitation center for people with Lyme, to open up a spa or rehabilitation center--a place for Lymies to call home. It was everything I wanted when I was sick and alone and my family couldn’t understand this disease at all.
I found comfort during those bad days by talking to other Lymies. I’m crying as I write this because it was so awful. Please remember no matter how bad it gets, there IS hope. You guys are my family. You have saved me, and I wouldn’t be here today without the help from the Lyme community. God Bless You all!
Heather Levine, California