The Story Behind the
Kentuckiana Lyme Disease Support Group
It is impossible to write how our support group began without telling some of my own personal Lyme story. It all began in September of 2003. Our family had just moved to a resort town on the Chesapeake Bay. Getting out of the tub one day I noticed an odd rash. It was not a bullseye, but was strange enough, that I knew as a nurse that something wasn’t right. Very quickly after the rash appeared other symptoms appeared, including, pain in neck and right arm, insomnia, stiffness on awakening and emotional instability, and fatigue like I had never felt before. I knew very little about Lyme disease, but was fortunate that a local GP diagnosed me relatively quickly. Due to my nursing background I too began researching Tick Borne Diseases. During my research, I found a site called lymenet.org. Lymenet had interactive boards where you could post your Lyme questions and this is where a woman named Stacey found me in October of 2003. She convinced me that I needed an LLMD and my journey began.
I had my first appointment in December of 2003 and began the slow hard process of getting better. Several months after my initial appointment with my LLMD, I met a second woman online named Helene and we began talking regularly by phone. My recovery was incredibly slow and for the first two years, I was nearly housebound. My husband did the household tasks, and I did what I could which was usually a load of laundry or maybe cooking dinner. Most of the day was spent on the couch. At the 2 1/2 year mark, I felt slightly better, but a rash had developed and my LLMD did not know what it could be. I changed LLMD’s and at the three year mark, began to have some days where I felt better. My two Lyme friends continued to call and we were even able to meet up a couple of times, since we all lived in the same area.
In April of 2006, I felt well enough to drive to a shopping mall about an hour away and include my mother and daughter. We planned to be gone a couple of hours and I was excited. I was finally joining the world of the living again. The night before our trip tragedy struck and my only daughter was killed in a car accident. Two months later in June of 2006, my only brother had a massive heart attack. He remains in an unresponsive state to this day. It was at this time that I truly thought I might die. Crawling up into a ball and not treating Lyme really sounded good. I could not imagine how I was going to survive my daughters death and Lyme disease. It was my two friends from lymenet, who called and cheered me on and told me, ”You can do this! You will make it through.”
I basically started over. My symptoms became raging again. I aggressively treated with injectible antibiotics and orals and slowly but surely began to get slightly better.
Fast forward to late 2008. I have had to change doctors again. I feel a bit better, but still easily fatigued and still treating on and off. My husband learns that he may domicile to another part of the country. We decide that a move to Louisville, KY is in order. The move was frightening to me as I would be leaving my Lyme friends and my doctors. Most of my support system would remain on the east coast. I remembered a woman on lymenet who had been helping others on the site for some time and who seemed very knowledgeable about Lyme. The plus was she was from Louisville. In Feb. 2009, we moved to Louisville. I emailed Pam prior to the move and she was nice enough to help me in the transition, including finding a Lyme friendly physician when I moved. The move was hard and took about a year to get over. I continued corresponding and talking with my friends on the east coast. Pam and I would also occasionally talk.
In early 2011, Pam and I knew that the time was right for a support group. We had both heard through the Lyme grapevine that there was a local minister who had Lyme. We decided to give him a call and see if his church might be an option for meetings. Mike, the minister, was gracious enough to let us meet in his church and the Kentuckiana Lyme Support Group was born. Pam and I had no experience with leading a support group. We thought we might get 3-4 people. Our first meeting was held on Sept 19, 2011. Ten people came. We knew without a doubt that we had made the right decision. It was time for a support group in Louisville and Southern Indiana. Since that time, our group has grown to nearly 60 people. Mike’s struggle with Lyme disease was featured on the front page of our local paper in July of 2012. One of our group members, Logan, will embark on a hike of the Appalachian Trail this summer to raise Lyme awareness. Our Facebook page at times gets 25,000 hits per month. We are making a difference and hope our group continues to grow and expand.
May is Lyme disease awareness month. We want as many people as we can reach to learn just how prevalent and serious Lyme is. It was through the kindness of perfect strangers who found me in an online Lyme board that I was able to navigate Lyme disease. In my opinion, support with this illness is just as important as the antibiotics or supplements you take. Pam and I agreed when the group was founded, if we help one person, it will be worth it. No one should have to go through Lyme alone.
(Click on links to see stories or videos.)
Watch the video here of Michael Gatton’s interview.