Lyme Disease: Stories From the Front Lines of An Epidemic – Maggie R.

(In her own words and with all relevant permissions)

My name is Maggie R. I currently live in Maryland.  I am 28 years old and was first diagnosed at 16.  I currently live with mild chronic Lyme disease.

I was 16 years old and it was the summer between my junior and senior year of high school I believe July of 2001.  I was out at a friends house in the country waiting for my mom to come pick me up.  We were in the front yard and that is when I was bit.  That night I had some friends over and found 3 bug bites on my legs.  I didn’t think of anything since it was summer and the mosquitoes were out in full force.  It was a week later I was going to a baseball game for my boyfriend at the time and was in the shower shaving my legs.  I looked at the back of one of my legs and saw this huge rash.  It was the bulls eye.  The other problem is that I have very severe local reactions to mosquitoes and always has since I was a kid so I was not sure what it really was at the time. I showed my mother when she came home from work and I was in the doctor’s office the next day.  I had the tick on my body for less than 12 hours and I had Lyme disease.

I went on 30 days of antibiotics of doxycycline.  I went through the “normal” pains and everything for 2 weeks.  I was in pain in every joint and it went from my hands, up to my shoulders, into my head and down my body.  There were some nights I could not sleep.  There were days I couldn’t eat.  I lost about 10 pounds from Lyme.  I was already a small girl at about 120, I went to 110 maybe less.  I could barely move most days.  All I wanted to do most days was just eat and walk.  It hurt so bad.  By the other 2 weeks I was doing much better.  I was going to lacrosse camp on my last day of doxy.  I was so excited to feel great and be active again.  

It was in September of 2001 that I was starting to notice problems again.  I already had knee problems from playing lacrosse and field hockey but it was a different pain.  I pushed past the pain and made it through the rest of the season.  For the rest of the fall I would come home from school and just sleep.  My parents would come home and I would be passed out on the sofa till about dinner was ready. I kept saying something was wrong but my mom just kept saying “you are fine” It was December of 2001 that I finally made my mom take me to the doctors.  They tested me again and of course I would always test positive/negative.  My doctor barely believed me.  In January I was put on 2 weeks of IV antibiotics.  

At this point I was having massive headaches,  horrible pain all over the body, muscle spasms, was losing brain function.  My doctor wanted to test me for MS. 

It was my home nurses that suggested I see a specialist.  She had also had Lyme disease. I went to see a specialist in the Towson area of Maryland. He was able to really help me out.  I had very weak muscle movement in my legs.  It was so hard to walk around school up and down the stairs and make it to a class in less than 5 min when they are across the building.  My new doctor tested me for babesia.  I tested positive.  I was informed that I can’t clear up the Lyme until the babesia was cleared up.  I was on so many drugs at the time.  ( I can get you a list possible since I have the medical records) I went under his care and was under new instructions for even to get around school and life.  

At this point it was the middle of the school year.  Our school needs to have so many physical educated credits.  I was a 4 time JV athlete, a 2 time Varsity athlete, sport manager, and a physical educated aid for the Athletic Director of the school.  So many people at that point were fighting for this 1/2 credit the system said I needed.  My mom, the AD, other teachers but I had to take a class.  I walked for the rest of the school year.  

I had permission to sleep when I needed to in school, I had special passes to show up a little late due to climbing stairs was not easy for me.  One of my scariest moments I had at school was just after a walking class.  I bent over to change and I had a massive lower back spasm.  It hurt so bad I was crying. I hit the floor and could only lay on my back crying.  They had to get the wheel chair and get me to the nurses office to get it to stop.  It finally cleared up but it was extremely scary.  

It was getting better as the last of the school year finished up.  I finished all medications up after I graduated.  Granted I took a lot of other hits and noticed I will be living with some issues.  

I took a hit to my life.  I graduated with very few friends.  I had no life.  And that is also when the chronic side started kicking in.  My doctor cleared me up for going back to sports and living a very normal life.  

Today I live with muscle spasms in my lower back that come and go once and a blue moon.  I have muscle and skeleton spasm in my chest. My husband I met my freshman year of college.  I told him of my problems but never really understood till I ended up in the hospital with massive chest pains.  The ER docs just said it was apart of my Lyme.  

I do control a lot of my symptoms with my diet and sleeping.  I don’t eat a lot of carbohydrates, I stay on the more natural sugar.  Sure sometimes I let go on my diet and can feel my body reacting to my eating and drinking.  Which than I know to change it as soon as I can.  I live a very normal life now.  I was told I can have kids and everything will be fine.  

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