In the summer of 1997, when I was 15, I was working at a summer camp in Plymouth, MA. In July I got the flu but didn't think much of it. It went away on its own and I seemed to be fine. Then, in October, I started getting severe headaches that would incapacitate me for weeks, I had horrible fatigue, and depression. I went to a few doctors, had lots of tests done, and eventually was referred to a Lyme disease specialist. I was diagnosed based on my symptoms and history because my tests were negative, as they often are with people who have been infected for a long time. I've probably been infected since I was about 8 (1990) or younger.
After I was diagnosed, I was put on oral antibiotic treatment and I got better to a point. But after some complications from the treatment I stopped treatment. I managed to live for a few years without treatment but in September 2000 when I went off to college, it was very apparent that I was too sick to continue without treatment any longer. So, I found a new doctor because my old Lyme doctor wasn't working well for me. I was put back on oral treatment and eventually was referred to a doctor in New York because I had a difficult case. I was diagnosed with two co-infections (Babesiosis and Bartonella henselae) and was put on treatment for them. After this, I decided I needed to pursue IV treatment because the oral treatment I was doing wasn't helping me very much.
From June - December 2002 I was on IV antibiotics with a PICC line in my arm. As a side effect from one of the antibiotics, I developed gallstones and had to have my gallbladder removed in November 2002. I had to stop IV treatment at the beginning of December 2002 because my insurance company decided I didn't need it any longer. I made significant strides forward during these six months of treatment but I was not healthy when it was stopped.
I continued with oral treatment after stopping the IV antibiotics but they weren't able to keep me on the path of improvement and I eventually began relapsing completely. I was bounced around from doctor to doctor again and didn't find anyone who I felt really knew what to do and understood me at all. So, I kept searching for a good doctor, because I knew a good one was out there for me. In May of 2004 I found my current Lyme doctor in Newton, MA. She's a holistic MD and uses a combination of antibiotics, herbs, and supplements and I'm hopeful this combination will help me. I was treated for Babesiosis and Bartonella again since it seemed I never got rid of them.
On July 14th, 2004 I had a single lumen port-a-cath (which I've nicknamed "Winnie the Port") put in my chest to try IV Rocephin again. I did three months of IV Rocephin, 1 gram twice a day four days a week. Unfortuately, I developed GI complications, including "sludging" in my bile duct which basically caused "gallbladder" attacks, although of course it wasn't my gallbladder. This means that even without my gallbladder, this medicine causes "galladder" problems so I can't be on it anymore. I'm now seeing a new Lyme doctor in upstate NY (about 4 hours away) and am beginning a long testing process to see if there are other things contributing to my difficult to treat case. So far, we've discovered that I have Reactive Hyoglycemia and Hashimoto's Thyroiditis, both of which could be caused by the Lyme disease and other TBDs. Right now I'm taking B vitamin supplements as well as B12 injections every three days to try to get the hypoglycemia under control. I'm also beginning a corn-free and gluten-free diet in hopes of helping the hypoglycemia, Hashimoto's, and corn sensitivity that has been discovered.
As of September 2004 I have decided that I need to put school on hold while I concentrate on my health. Deciding this was very difficult but once the decision was made I discovered that I became very calm and at peace with things. I now feel that I have the opportunity to explore other things and, more importantly, take the time to heal that I so desparately need. And, I will also take this opportunity to have FUN! I will probably go back to school at some point but most likely it won't be at Wheelock. I'll finish at a state school somewhere (probably in Oregon) but that isn't as important to me right now as following other projects that have much more meaning and relevance to me in my life.
My life has been greatly affected by Lyme disease and the other tick borne diseases I also have. Since I have been living with it for most of my life, I often wonder what parts of who I am are really me and what parts are the disease. But, from day to day I struggle to keep on the positive side and look at each day as the possibility for something good to happen. Some days it does, some days it doesn't. Some days I make it out into the world and get stuff done and have some fun. Other days I lie in bed and watch tv, unable to even gather enough energy to get up to take a shower. But everyday I keep going. Giving up is not an option, it never will be, so I keep fighting. And maybe one day I'll find my way to health again. In the mean time, I only hope to find my way to peace.