Spoonie Story: Christel Evans

Hello my name is Christel Evans and I live with Lyme disease.


spoonie christel

I know you’re thinking “she doesn’t look sick”. But I really don’t even know where to begin because this has been a part of my life since I can remember. My mom noticed when I was younger that I would have facial tics. This is where you can’t control the muscles in your face and they just move on their own. When I got older I started having severe muscle spasms throughout my body. This is when I was about maybe 6 or 7 years old. When I started going through puberty it got even worse. I was always sick as a kid and doctors would always just tell my mom that I’m a kid and I’m just making it up. When you’re that young you even start to believe the doctors and just try to live your life normally but that was never my case. I was alone for a very long time and no one would believe me not even my own family and friends.

By the age of 13 my body would have uncontrollable muscle spasms and verbal spasms as well. So test after test after test and nothing would come up. Many vials of blood were taken. Many different Specialists were seen. I have had so many MRIs, CAT scans, EKGs, EEGs, and so much more done as a child. I was just always sick. But the older I got the more crazy the doctors thought I was. They even decided to tell me i was epileptic and Tourette’s. When I was 15 I had a severe seizure at school. To me these seizures are just uncontrollable muscle spasms and it feels like someone is electrocuting your whole entire body and you can’t control it. We went straight to the neurologist and they did an MRI. All I can remember is them telling me to stop moving and I could just remember yelling at them I can’t.

After having my son, who also needs to be tested and possibly treated for Lyme, I lived with severe vertigo, constant migraines, and just overall pain everyday. There are good days and bad days but mainly bad days. I lost many jobs because of this invisible disease. They still to this day can’t seem to find anything wrong and what’s causing these seizures. It wasn’t until I was 23 years old when I found out I had Lyme disease. I was working at my old job driving rental cars and something unexpected happened. My whole right face started drooping and I couldn’t control my face any longer. I started having my seizures but because I was driving I forced myself to focus until I got to a safe place. Then my wife, who at the time was my girlfriend, came and picked me up and took me to St. Mary’s Medical Hospital. They wouldn’t see me for a while and I even told the doctors it seemed like I was having Bell’s palsy. The doctor kept insisting no it’s not Bell’s palsy it’s something else and then proceeded to give me a muscle relaxer after I told them I was not allowed to have that because of my heart condition. I started to feel really sick at this point and they realized I wasn’t knocked out yet. So they then proceeded to shoot me up again with something else and told us that it was just more muscle relaxers.

Come to find out they thought I was schizophrenic and gave me a high dosage of Ativan & Chlorpromazine. They then filled a script for me to take at home called Thorazine. After the last dosage they gave me through my butt I knocked out and my heart stopped. I didn’t wake up for another 3 days in my home. And from then on I have had nothing but horrible blackouts. I decided to go back to the neurologist and make sure everything was okay. That is when he decided to tell me my blood results came back and showed positive for Lyme disease but not to worry because it’s not a real disease. He then proceeded to tell me that I needed to go to the University of Miami and live in a glass box for two weeks to be studied on because they cannot figure out why I have these so-called seizures.

That is when I took matters into my own hands and looked up Lyme disease. Never saw that neurologist again let me tell you that. It’s very hard to find a Lyme doctor in Florida. But my mom somehow found a doctor for me to go speak to. Most doctors lose their practice or their license because they help people like me. These doctors cannot take insurance  so everything is out of pocket.  I paid $700  for me to sit with a Lyme doctor for 3 hours. This doesn’t even include the blood testing that needs to be done and that costs an arm and a leg. You want to know about medications? I haven’t even gotten that far because of how expensive everything is. I just try to live my life as normal as I can and be healthy. I’m hoping to go to Jacksonville soon to get the rest of the help that I need. Until then this is my story and it’s still being written.

My Symptoms:
-Uncontrollable muscle spasms
-Facial tics
-Severe migraines
-Heart palpitations
-Numbness in my fingers and toes and even sometimes legs
-Severe pain throughout my whole body
-Feels like someone is electrocuting my spine
-Unable to with stand too much heat or cold
-Vitamin waster
-Memory Loss
-Constant confusion
This is just a small list of things I live with on a daily basis….I hope my story can help many others that are being told they are crazy or nothing is wrong with them. Don’t ever fall into a depression because of someone with a Dr. degree is telling you you’re making it up. Because there are so many others with you. I am someone who lives with Chronic Lyme Disease and may never have a different life but that wont stop me from living my life. Never give up. Ill keep you all posted once i go to Jacksonville!
Love Always,
Christel Evans

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