"There are No Deer in Wayne County"
by Connie Siese

I was really feeling great. I was at the end of a long, nine-month flare from rheumatoid arthritis (RA). I was even mall walking. I had to move my classroom again, and was able to do it with minimal discomfort. I am a caregiver for ages one through four in an Adult Education Center. It was the first day of school - a really hectic time. The first day the kids really cry and fuss a lot. I was really busy, but I kept feeling an irritation on the right side of my jaw. I kept rubbing my jaw on my shoulder, trying to get rid of the irritation. About two-and-a-half hours into the morning, I reached up and felt a small scab, or so I thought. I picked it off, and it looked like a small piece of pepper. I just flicked it away. I felt a blister getting bigger, and my jaw got really red by the end of the day. Because of the location of the bite, it was really hard to see. After work, my husband said it was getting red, and a perfect circle had formed. I saw my family doctor the next day, and he said it was probably a tick bite. I was already on Biaxin for a sinus infection.

For the next three days I was extremely tired and felt like I had the flu, but I attributed it to the busy start of school. Incidentally, we've had mice in our building all the time for the past five years.

On Saturday, we got up very early to attend an estate auction about one hour away. I woke up in terrible pain everywhere, a bad headache, and so dizzy I could hardly stand. I was really irritated, and was not going to let another RA flare get me down. I took my medicine, and we headed for the auction. By the time we got there, I was really sick. The pain was so bad everywhere, especially in my joints. It took us over three hours to get home, because I could not stand the bumps in the road and kept making my husband pull over.

Later that day, I ended up in the ER. The first doctor that saw me said I needed to see the main doctor. I didn't care - I was in so much pain and so sleepy, I didn't care where they sent me. The second ER doctor was very rude. When he come in his exact words were, "You really think you have Lyme disease?" First time I had heard the word Lyme. "You couldn't possibly have been bitten in the city, because there are no deer in Wayne County." I was bitten in my classroom about a mile from the hospital. "But, if it will make you feel better, I will do a blood test. You are very lucky you are already on Biaxin, because it is the number one treatment for Lyme, and you will be cured."

Well, as everyone knows, it's downhill from there. I had so many symptoms within a few weeks that I couldn't believe anyone could feel that bad. When I was able to function a little better, I was determined to prove that ER doctor wrong. I headed for the library to get any information I could on Lyme. I also started calling all the health departments. The Michigan epidemiologist told me I couldn't have been bitten by a Lyme disease infected tick, because they only bite in July and August - I was bitten on September 15, 1993 - but if I got bitten again to send him the tick. I asked him if the tick had a calendar and knew their last date for a meal was August 31.

The library ordered me a book from another library. It was the Lyme Disease Update from US and Canada. I began reading. After being told that there was no Lyme in Michigan, I was very relieved when I reached the back of the book. There were six Lyme disease support groups in Michigan - and the name of a woman I could call. I thank God for her, and having her name in that book. Finally, I had a connection to information to help both my doctor and me.

During this time, I kept going to my doctor with terrible symptoms - but bringing him all the information I could find. He was very open-minded, and willing to listen and learn. Because of all the cognitive problems, he started ruling out brain tumors and other diseases. My Lyme test was negative. He also had very little information on Lyme. He said he was also under the impression that it was curable with one month's antibiotics.

The best thing I ever did was keeping a diary. I had so many neurological problems, I could never have been able to tell another doctor what was going on. My doctor sent me to an infectious disease specialist. She said I couldn't possibly have Lyme, because the tick wasn't on me for longer than 24 hours and I wasn't in the woods near deer. Those terrible stabbing pains and other symptoms had to be a thyroid problem. I had taken all my test results to her and my thyroid was normal. By that time, I realized that I knew more about Lyme disease than she did. She charged me $l19 for that visit.

That same evening, there was a large Lyme meeting in our area. Two of our gift shop customers recognized me, and from then on I received more information - including the symptoms list. I had 27 of the 45 symptoms at that time. They also gave me a name of another doctor two hours away that could help me. It was a four-month wait for an appointment. I took Dr. Burrascano's Treatment Guide to my doctor, and together we read it. I was too sick to wait four months. He put me on Doxycycline, 100 mg. three times a day By the time I saw the other doctor; I had more symptoms, and a positive urine antigen and Western Blot. I had asked the specialist to do a urine antigen for Lyme, but she said she didn't believe in them.

Because of severe panic attacks and always getting lost, my husband had to drive me to the doctor two hours away. It was very difficult, because we had to find someone to watch our gift shop, and the two-hour ride was very painful. God bless my family doctor. He was willing to learn and take over my case, so I wouldn't have to make that long trip.

Eventually, the Doxycycline quit working and I was getting worse. Our one and only child was getting married, and I felt so bad I didn't think I would be able to even walk or go to the wedding. I was then put on Zithromax pulse therapy - three days on; four days off. It was like a miracle. The wedding was a great joy. Eventually, the Zithromax quit working, and I am now on Vibramycin -100 mg. two times a day - along with vitamins and other medications for various symptoms. Most of the symptoms are much better, except for this last attack on my knees. I took a three-week leave, because I couldn't walk. My knees felt like they were broken. I knew that I couldn't chase those kids in my classroom.

I know that Lyme will always be a battle of good days and bad, but I really try to keep my sense of humor. I'm not afraid anymore when I get lost, or don't know my name, or forget something. The panic attacks are better when driving, but I still don't go very far on the freeway. I am really tired of the pain; it's a blessing when it goes away. The best advice is to call and call until you find a support group, or a "fellow Lymie". If my Lymie buddy, Karen, was not there to listen to my crazy days, I don't know where I would be. You need support from family, friends, or anyone who will give it. Tell them you aren't a certified "NUT", you have Lyme disease. And, remember to tell them thank you for caring. Never give up until you are satisfied with the answer - remember, it is your body and mind that is hurting. When you feel better; see if you can help someone else who is searching for answers.

Personal Note: Despite having to work full-time while dealing with the physical hardships caused by Lyme disease, Connie spends many of her free hours furthering the cause of Lyme patients in Michigan. She is always there with a helping hand, and somehow always manages to bring laughter into your life. I admire her very much.  

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

This page hosted by Get your own Free Home Page