Annie's Lyme History 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 antibiotics. I managed 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, if at all.

IV Treatment and New Doctors From June - December 2002 I was on IV antibiotics with a PICC line in my left arm (you can see the yellow Vetrap covering it in the picture to the left). 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 better doctor, because I knew a good one was out there for me. In May of 2004 I found a holistic MD who uses a combination of antibiotics, herbs, and supplements. First 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 antibiotics again. I did three months of IV Rocephin, 1 gram twice a day pulsing four days a week. Unfortuately, I developed GI complications, possibly 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. At this point, though, it is unclear whether this was the problem or if it was another underlying GI issue worsening.

New Doctor, New Diagnosis In October 2004 I started seeing a new Lyme doctor in upstate NY (about 4 hours away) and began a long testing process to see what other things are contributing to my difficult overall health picture. So far, I have been diagnosed with Reactive Hypoglycemia, Hashimoto's Thyroiditis, and Neurocardiogenic Syncope (NCS), all of which could be caused by the Lyme disease and other TBDs. I began taking various vitamins and supplements to try to help get my body in better shape and better able to handle Lyme treatment. In May 2005 I began daily IV saline infusions with vitamins and minerals added (those were added a few months later). The IV hydration is to try to help my energy level and NCS as well as giving my stomach a break from the oral supplements. In July 2005 I started back on IV antibiotics with three months of IV Clindamycin. This antibiotic didn't help me (and made me feel worse because of its side effects). After those three months I was switched to IV Primaxin and began on Halloween. This treatment did bring improvement and I continued on it for almost 3 months, increasing the dose after about the first month. But had to discontinue it to address a severe and sudden general crash and specific serious crash in my GI tract as well as my immune system. My GI problems have now been diagnosed as Gastroparesis and I am on treatment for that with quite a bit of improvement. And on September 14, 2006 I began treatment again with IV Primaxin with slow but noticible improvement. I have been on it continuously since then, except for a three week (unscheduled) break because of insurance difficulties during which time I got significantly worse. I am still seeing slow but noticible improvement and at the end of February 2007 I began pulsing in IV Flagyl one week a month to get at the cyst form of the Lyme bacteria. Hopefully I will be able to continue this combo as long as I'm improving and don't have any major side effects.

School and Everything Else In September 2004 I decided that I need to put school on hold while I concentrated 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. After a three semester leave of absense, I am back at school for one class and I have been taking online classes one at a time in an attempt to chip away at my remaining credits required for a Bachelor's degree in Human Development. I hope to graduate in May 2007. 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. From day to day I try 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 hopefully one day I'll find my way to health again. In the mean time, I only hope to find my way to peace.

For more information about my day-to-day health journey, visit my Lyme journal.