Busy Bee

*Originally published 5/31/13*

On Saturday, we went to the Lyme Rally, May Day! It was so interesting. There were a lot of people and the cool thing was they were all like me. A bunch of Lymies were talking about their experiences and I would think, “I have that." There were also some doctors and a lawyer who were talking about their experiences with the disease. I also got to meet my “cyber friend” Tania who came all the way from California. I met so many other people too. I am looking forward to going next year and maybe even having a fundraiser of my own.

Also last week, my mom received a call from our local newspaper saying they wanted to do an article on me, my Lyme, and this blog. So that’s what they did! A few days ago, the article was published, on the front cover of my local paper and in the Washington post. I am amazed at what has happened since it came out. All over my social medi,a people are posting and re-posting it. People I don’t even know are posting it! It’s crazy to think of all the people it’s reaching. Not only are people seeing it around my town and in DC but all over the country! My parents have received several emails and calls from people about the article. One man actually said that someone he knows has been sick for a long time and after reading the article they are getting checked for Lyme. I didn’t even think about the fact that the article could be helping sick people; I just thought it would help spread the word. When my mom told me about what this man said I felt so excited. No matter how down I get, I will always know that I am helping people.

Also, from the article being published, more teens have joined my Lyme group on Facebook. I am so thrilled with how my group has taken off. When someone is down we cheer them up. If someone has a question they get multiple answers. We have become this little family of sick kids in need of comfort from people who understand. It’s nice to actually talk to kids my age who understand what I’m going through. They understand why I can’t go to school. They understand why I can’t get out of bed today. I love these people like they are my family. I think I know them better than I know my actual family. I really hope one day we can all meet in person when we are all cured and living happy, healthy lives.

On another note, I went back to my new doctor today. It was a big shock that my Lyme test was negative (not). As I've said before, many people who have Lyme test negative for it because of the improper testing techniques that many of those in the medical field use. If you feel sick but test negative for Lyme, keep trying to get tested other ways! Lyme can be sneaky.

My doctor is putting me on antibiotics for 2 weeks to help fight Lyme and get rid of my sinus infection, then on another kind of antibiotic for 3 months. I also am going back to being gluten free as he thinks this will help. Although my tests were negative he still believes I have Lyme. He said I have the book definition of Lyme disease. I find it funny how doctors can’t even trust blood work anymore because of the false negatives.

Nothing in the medical world makes sense with this disease. Why is it ok for people to be on antibiotics for acne for years but not people with Lyme? Why is it ok for there to be hundreds of us at May Day suffering from the same symptoms, just for them to say it’s all in our heads? We are not faking. We are not seeking attention. We are looking for a cure for this life-altering disease that no one seems to want to believe is real. Well I will tell you, It Is Real!

To read the article about me, click here.