How has Lyme Disease affected your life? What inspires you?
My name is Chloe and I am 14 years old. I have had Severe Chronic Neurological Lyme Disease, along with Ehrlich, Bart, and Babesia for 3 years now. I never got a rash and it started out by severe strep throat like symptoms when I was 11. Bad fatigue, sore throat, headaches, and a high fever of 103 for over a month without the fever breaking. It was the beginning of December when this started and by Christmas I got a level 10 headache and basically as my mom and doctors put it, I was shutting down.
A couple days after that I went almost completely blind. So they sent me to our local hospital where I stayed for 1 week, during this time they tested me for a lot of things and everything was coming back normal. My fever had broken but I still had a level 10 headache, despite the heavy pain killers, and was still almost completely blind. From there they rushed me to Washington DC where they ran every test known to man and everything was coming back okay, they gave me varied tests like spinal taps. At this point I was pretty much a vegetable and have very few memories from this time, but I remember a doctor telling me I was faking and that it was in my head and I needed to get over it. They discharged me and at this point I was still blind and temporarily paralyzed and couldn’t feed myself. But my parents didn’t give up they had heard of Lyme disease since we live on the Eastern Shore of Maryland and we drove several hours away to a LLMD who sent my blood to IGNEX.
While waiting for the blood test to come back I got worse and they had to send me to a Hospital in Florida. Where I spent a week which included painful tests. At the end of my stay I remember the doctor and a Social worker coming and telling my Parents that they needed to speak in private, during which they told my parents that I was faking and that they needed to control me and it was my head. At the end of the conversation he said and also your LLMD called, you tested positive for Rocky Mountain Spotted Fever. My parents just smiled and walked out.
I immediately started treatment and my vision came back and my headache got better. The next winter I was back in the hospital, but it wasn’t as bad. But after that I was only having a couple bad days a month, I mean everyday is a struggle but getting to where you can function is a blessing. Last year was pretty good. This year has been rough I haven’t been in school for 2 months and am starting to get tics which is terrifying. Lyme has now damaged my liver, heart, and thyroid.
I have to say the scariest thing is being blind and paralyzed, fearing that you would be like this for the rest of your life. However, I am starting to feel better and I am going back to school Monday . So YAYYAYYAYAYAY! I would have to say my future inspires me, along with my family and Lyme Friends. It is hard to see a future with Lyme Disease, but I refuse to give up my mind and that is what pushes me.