HB399

*Originally published 3/9/16*

Yesterday I went to the State Delegate building with a group of Lymies and other advocates to fight for the House Bill 399: Lyme Disease Testing Disclosure Act. This bill would make it so doctors in Maryland would have to inform patients of the inaccuracy of the Lyme testing.

The current Lyme testing has been around for over 50 years, and is very inaccurate. Many people, including me, get false negatives, so Lyme can go undiagnosed. If doctors had to inform patients of this, more people could get clinical diagnosis, and many could be saved from falling victim to this disease.

Here is my testimony:

My name is Cassidy Colbert and I support HB 399 Lyme Disease Testing Disclosure Act.

I have been suffering from Lyme Disease for almost 4 years, although I may have had it for many years before that. My symptoms started in May of 2012. At the time, I was a freshman in high school. I went to numerous doctors and specialists who could not figure out what was wrong with me. I was tested for Lyme multiple times, and each time I was told I didn’t have it. I didn’t know the tests were inaccurate, and I’m not sure my doctors did either. As a result, I went untreated and suffered tremendously for over 6 more months.

I was a high school athlete – I played volleyball and softball my freshman year, but had to give them up, due to my constant pain and fatigue. Some days I can barely walk or even get out of bed. Along with my pain and fatigue, I also have constant headaches, nausea, tremors, hot flashes, trouble breathing, numbness in my extremities, loss of concentration and memory issues, just to name a few. I lost a huge part of my childhood, lost many friends, as I was no longer able to “hang out” or do any of the things a normal teenager should do. At school, after missing 29 days the first semester of my sophomore year, I had to take an abbreviated schedule, and take a fewer number of classes, so I could try to make it through the school day. I had to get a 504 plan, so I could have accommodations to ensure I would be able to graduate. I didn’t, and still don’t, have the life a girl of my age should be having.

started college in September, in the hopes that my disease would not hinder the next chapter in my life. I was wrong. I had to withdraw from college this semester and I spend most of my days lying in bed or watching TV. I have no energy to do much else, and I am in pain and nauseous all the time. Most days I have little hope that I will get better. I have watched some of my Lyme friends become completely bed-ridden, spend their days in a wheelchair, and even die. I don’t want to die. I am only 18 years old. I should be enjoying my carefree college days, not thinking about if I will be able to get out of bed each morning. I already lost my childhood to Lyme disease; I don’t want to lose my future too. Who knows how much less suffering I could have endured if I was diagnosed sooner.

One thing I learned yesterday is that my life is far from the normal 18 year olds. I’m not worried about grades or boys or sports. I’m worried about bills (medical and legislative), doctors’ appointments, and most of all, surviving.

I know this journey is hard and I often lose hope, but I know now that something good will come out of it. I enjoy helping people and changing the world. Who knows, Lyme may change my life for the better in the end.