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Story 54

How has Lyme Disease affected your life? What inspires you?

In high school, I was around 125 pounds, athletic, averagely in shape, had good grades, and was very social. During my senior year I had put on weight in a matter of months and the following summer after graduation is when everything started to really go down hill. I was moody, slept constantly, wasn’t doing well in school couldn’t remember things here and there, had stretch mark like scars all over and they went around my entire waist like a belt, under my arms and the side of me, and down my inner thighs, my hair got thinner, and I was severely anti social. I thought I was losing my mind because no doctor knew what was wrong so they would just send me on my way and tell me it’s all in my head or that I just need to take better care of myself. I got through my first semester of college (failed everything) and moved into the second semester still thinking I was just crazy because no one thought anything was wrong and that college must clearly not be for me even though I did well in high school. So middle of the second spring semester, (2014) I was working for my mom at her preschool and a parent had come in telling her about her 13-year-old daughter and 3-year-old son who were very sick and was telling my mom about their symptoms and when she started talking about her daughter my mom started noticing similarities between her and I and called me up to talk to this parent. Turns out this parent is also a doctor and asked if she could see my waist- not knowing the slightest bit what was happening I showed her the scars and she went into full doctor mode and started going to town with information to my mom about what to to do. And instead of going on a spring break trip with my friends, I sat in a doctor’s office talking about treatments and taking a medical leave from college and pretty much saying goodbye to life for a while which included the classes I was currently in at community college, I had just been accepted into an internship and been accepted into an out of state university-  all just a couple days before being diagnosed.

I started out detoxing, then supplements. And I thought the supplements were horrible just by themselves. I also changed my diet- no gluten, no sugar, no dairy. Then by May was finally starting on antibiotics and oh my word I have never felt so sick and helpless in my life. The summer was brutal now mind you I live in Texas so on top of feeling horrible it was also raging hot. I did the normal working up to different antibiotics and doses but every higher dose or new drug made me feel more and more helpless. And by the end of the summer I was ready to give up. I felt like my body was no longer indestructible and that if I even got through this than there would be no way to have a normal life after because I knew things would be different. Come September I was finally clearing up and feeling better and from there it was a steady climb uphill and everything went smoothly, I was able to slowly decrease antibiotics and I was able to go out and not be stuck in bed. January 2015 I was finally declared in remission and the weight that was lifted off my shoulders is indescribable. I was left with a couple of set bacs that I refer to as” permanent damage” being that it was in my brain so my emotions are pretty much shot, my nervous system which causes severe anxiety, faulty hearing, my MTHR gene needs a supplement, and I cannot have kids. And I stay on a gluten free diet but I wouldn’t consider that horrible.

But I got my life back.

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