My Story

On Monday, May 24, 1998, I woke up to excruciating pain in my lower back and in every possible area of my head. I finally went into the Emergency Room on Wednesday, May 26, 1999. After hours of being there, I was given a shot of Demerol, I was told I had the flue, given pain medication, and sent home.

The pain never stopped. I could only sleep for 40 minute intervals and I had a hard time convincing everyone just how much pain I was in. I went back to the Emergency Room on Sunday, May 30, 1999. I couldn't walk by myself. There were more tests run, I was given a shot of Morphine, a pain medication and sent home.

By the time I arrived home, I could not move my upper lip. I called the Emergency Room and I was told it would go away.

Monday, Memorial Day, May 31, 1999, found me unable to move at all. I had to be carried to the car and driven once more to the emergency room. Still in excruciating pain, I now had my entire face paralyzed and I was having trouble moving my arms and my legs. I was still in excruciating pain.

A neurologist was finally brought in and the testing began.

I could barely talk. A spinal tap was done in the emergency room and I had once more been given a shot of Demerol.

I was tested for every possible disease. Multiple Sclerosis, Lupus, Aids, etc. etc. etc. Catscan, M.R.I., blood tests, urine tests. Needles, intravenous.

I was being admitted.

We had a probability of 10 options regarding what was wrong. As each test came back negative, the next option seemed more drastic. It was comforting to know someone finally understood how much pain I was in but it was discouraging to find myself unable to speak properly and unable to move on my own.

It was finally narrowed to one problem left: Lyme Disease. The problem was that each Lyme Disease test kept coming back negative, yet I was showing all the symptoms for it. Seems I may have what is referred to as a Dormant Lyme Disease. I could have gotten bitten anywhere from one to three years prior and the results will not show positive until six weeks after the symptoms start.

This is week three. I am looking at four weeks of antibiotics given intravenously through a MIDLINE by a nurse that comes to my home every day. I am on vitamins and trying everything I can think of to kill the pain and get my face working again. I can still barely walk and my arms keep tingling and hurting.

Please, this is a disease that has no mercy and no cure.

June 4, 1999. I visited my neurologist. He seems to believe I'm coming along fine. The face paralysis is almost gone but my left arm and leg still tingles and I constantly get pins and needles. I have no feelings in the fingertips of my left hand. He believes there is no problem with my being on steroids, which, I am understanding is not very good for a Lyme patient. My left hand is so swollen, I had to use oil to remove my rings. For the first time in 23 years, I do not have a wedding band nor an engagement ring on my finger.

I have an appointment scheduled for June 21, 1999, with as near a Lyme Disease specialist as I can find in the State of Massachusetts. I'll still be taking antibiotics then so I feel comfortable waiting.

I've begun to feel like I have a ball attached to the bottoms of my feet and my legs are still functioning as if they are Jell-O. I wish I had feelings back in my fingertips. Rainy days hurt. We'll see what June 21, 1999 brings.

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