Hello, my name is Tracie Young, and my story starts on a cold November day. When I was about three months old, my parents noticed I was very quickly becoming quite sick. I was rushed by airplane down to a medical center in St. Paul, Minnesota, and on the way, my heart stopped beating. Paramedics where able to get it beating again, and when we landed I was immediately prepped to have open heart surgery. I miraculously survived the surgery, but shortly there after, lost my right arm due to complications from the surgery. Growing up, I thought that living life with only one arm would be my biggest challenge, however, I never imagined that thirty-one years later everything I have ever known and every challenge that I have lived through would be the least of my worries.

It was July of 2009 and I had a great Fourth of July weekend of camping and hanging out with friends. It was probably the best Independence Day that I have ever had. About four days later I developed a terrible headache similar to my migraines, but much more severe in nature. I went to the emergency room where I had a spinal tap done and was told that I had spinal meningitis. The headache continued to bother me over the following weekend not getting any better. I again returned to the emergency room demanding that there was something wrong with me and telling them that I had never felt like this before. This time the emergency room said they didn’t think I had spinal meningitis and that I probably just had a really bad virus. I was again sent home with pain meds. Over the next week I became so fatigued followed by pain in my joints that everyday life was almost impossible. My heart started having these really weird palpitations making me feel like I was having a heart attack. I felt like I was living a completely different life from everyone else. They all just seemed so far away. I had been back and forth to the doctor always getting the same results; there is nothing wrong with you. They decided I needed to see a neurologist for the continued headaches. It was here where a wonderful nurse practitioner decided to do a Lyme disease test.

I was standing in my kitchen when the nurse called me at home and informed me that my test came back with a few positive bands and they wanted me to see a doctor who specializes in Lyme disease. My husband was standing in front of me and I immediately started crying. I was put on a month of doxycyclene and was sent on my way. It would be another two months before I could get in to see this doctor. I continued to be sick and just did not get any better. They were able to help some of my headaches with migraine medicine and they basically just tried to treat the symptoms. I was told that I should see a therapist and that I could be experiencing signs of depression. When I finally got to the doctor they put me on a strict diet of antibiotics, vitamins, and supplements. I seemed to get a little better and was able to continue on with school. They told me I would have to be on this regimen for about a year.

Over the next year I did a lot of research and read the many stories of this debilitating disease. Though most people do get better there are some of us that just need more treatment. I became aware of the political and medical insurance issues that plague this disease. I began to pray for these people and decided that I will fight to change the stigma that follows this disease. I began going to church feeling like I had no other options and began learning how to have faith in God and that he would get me through this. I saw things passing me by in life, and all the activities and events that I used to be a part of, I no longer had the energy for. My school work and grades began to slip seeing that by the time I got home I had no energy left to even sit up much less do my homework. My relationships began to change and my husband and I seemed to fight all the time. It seemed as if my life was crumbling beneath my feet.

In April of 2010 I was getting worse and worse. One day I was in school and I became very confused as to where I was. I had to call my Mom for her help and was able to bring myself back. My symptoms have been more periods of confusion, forgetfulness, tremors, muscle ticks, possible seizures, headaches, neck aches, stomach pains, vomiting, diarrhea, fatigue, joint and chest pain, and continued heart palpitations. I was bedridden some days and felt like I was dying other days. Though I have a lot of strength there were and are times that I don’t know if I will make it through. It was decided by my Lyme doctor that we would run a co-infection test to see if the tick gave me something else. It took a month and 600 dollars later to get the positive results. Now not only do I have Lyme disease but I also have Bartonella. He explained that is why I was not getting better and that we have to treat it in a different way. He told me to go get a second opinion.

My second opinion revealed that there is no one here in Minnesota that is educated enough to treat my symptoms and what these diseases are doing to my body. I must go out of state and see someone that can better help me. I have decided after much research and talking to one of his patients to go see a doctor in New York City. My appointment is set for the middle of August, which seems like forever away. The problem is that these doctors take only cash so that they don’t have to fight with insurance companies and they are very expensive. My family only has one income since I am unable to work, and now I have to withdraw from school because of my disease. We are barely able to pay for our bills much less anything extra that the kids need. My medicine that I take is not covered by insurance and costs us about 200-300 dollars a month. These meds are only going to increase in price after my trip to New York and the longer that I am being treated the more likely that my insurance company will deny treatment and medicine that I need. The co-infection makes my case specifically harder to treat and that much harder to beat. I am unable to do any fund-raising activities myself and for the first time in my life I have to be humble and ask for help. Our families can only do so much. I ask for prayers if you are able to do that and I ask that you spread awareness of how terrible this disease is. It starts with only one person. I have faith in my ability to get better and I promise that I will never stop fighting. I make these decisions when I look at my children who so desperately need their Mom back. This disease has completely taken a hold of my life for over a year now and I plan to not let it take another year.

When I do get better I plan to make it my life’s mission to advocate for this disease and all the other people battling it. I would like to share my story with others and help them get through their tough times as well. I know first hand how it would have helped me to have someone like that around. Too often in your time of need do you find who your true friends are and the people that are going to help you get through this. Mine have dwindled down over the past year and I want to personally thank those that have stood by my side. You know who you are. I am weak now but my mind is strong and my heart is even stronger and through your love and support and that of my families I will beat this disease even if it is the last thing that I do.