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Linda's Story

My Ordeal With Lyme Disease

Where do I start? I guess that would be back four years ago. I had been cutting the grass late in the afternoon on our wooded lot. When I went to bed that night I noticed that my ankle was itching terribly and when I looked, I saw something that looked like a small bump. It itched all night and the next morning, so I decided to call the doctor and make an appointment; I saw the doctor that afternoon.

The bump on my ankle was still extremely itchy. The doctor looked at it, ran his finger down over it and gave me a couple of tubes of Topicort cream to apply to it. I went home. It stopped itching late that night. A few weeks later, I noticed a blotchy, reddened area over the place where the bump had been. It faded after a while, so I didn't pay much attention to it. A few days later I came down with a fever, headache, sore throat, and swollen glands.

I was so tired that I couldn't get out of bed for days. My husband drove me to the emergency room and I was given a prescription for antibiotics. I felt better after a few days. A few months later I was bending down and when I tried to stand up again, I couldn't without a lot of pain. I was walking around bent forward. My tailbone was also hurting when I would sit for a while.

I was sitting at my computer at work. It was time for a break so I tried to stand up to leave. I couldn't straighten up without a lot of pain. I mentioned to the girls in the office that I must be getting old. I went to see my doctor but he couldn't find anything wrong. A few months later I was having a hard time staying awake and keeping from yawning at work. We had a fire drill and I got up to leave and couldn't walk. I couldn't put my body weight on my right leg or foot. I was experiencing extreme pain. I was working at a hospital so, I was taken to a doctor there, in a wheelchair.

He prescribed a muscle relaxer and a pain medication. The secretary wheeled me to my car in a wheelchair, and I got into my car standing on my good leg. when I got home, I dragged my injured leg into the house where I reached the couch and sat down, and stayed there until my husband arrived some hours later. I went to see my doctor; he said I should see an Orthopedic doctor. I made an appointment. The doctor looked at me and ordered an MRI. He looked at the MRI and said I needed surgery on the same disc that I'd had surgery on eleven years before.

I had the surgery but my pain was intensified afterward. It was about a month before the pain calmed down to the state it was before the surgery. I wasn't getting any better. One day I got some home health handbook cards in the mail. One of the cards listed the symptoms of Lyme Disease. I began reading and realized that I had all the symptoms. I called my doctor's office and asked to be tested... the test was negative.

I decided to see another doctor because I couldn't get pain medication from my present doctor. After a year I was tested again for Lyme Disease... the test was negative. I started getting attacks where my joints were hot and swollen, and so painful that I couldn't move my leg. I had to take to my bed and use a crutch to go to the bathroom and back. I was taking Darvocet every four hours.

We had to sell our house and couldn't afford to rent, so we moved in with a friend. One day she handed me an old Womans' Day magazine to look at. I found an article entitled "The Critters We Encounter." It stated that most tests for Lyme Disease have a high false/negative rate. That's when I decided to see another doctor. I searched for a doctor that treats patients with Lyme Disease and found one in Hermitage, Pennsylvania. His office sent forms for me to fill out and mail in, along with a vial for a first morning urine sample to be frozen immediately. I went to my appointment.

Because I had all of the symptoms associated with Lyme disease, the doctor prescribed antibiotics that day. His nurse drew my blood and sent it along with my urine specimen to a lab in California. A few weeks later I got the results... it was positive. I had Lyme Disease for three years before I was diagnosed. I have been on antibiotic treatment for over a year now. I also have had six weeks of Rocephin IV treatment through a Hickman, or central line in my upper chest. The PICC catheter in my arms didn't work.

The Hickman was removed with a local anesthesia. My skin had grown fast to the Hickman and had to be cut from away from It. The ordeal was very painful and left quite a scar just above my left breast. When I mentioned the pain to the doctor he replied with, "that doesn't hurt." The nurse asked if I wanted smelling salts; I was so nauseous I felt like I was about to faint or vomit. The doctor said I didn't need smelling salts, so I didn't get any.

I am disabled and am on SSI. It helps to buy antibiotics, acidophilus, and vitamins. Sometimes I feel as if I don't have a life anymore -- compared to the life I had. But what I really need to do is focus on the positive... like what I CAN do. This will help by body with the healing process. I have the faith to believe that God will heal me. The healing has begun!!!

Since I have been taking antibiotics I have improved. I can get up out of bed on my own. I can walk enough to do household chores. I have a stool in the kitchen that I can sit on when cooking or doing dishes. But, I do have nerve damage and a partial paralysis in my right leg and right foot. I still have those awful nerve spasms throughout my body, and fatigue, muscle aches, hoarseness, constipation, insomnia, hearing loss, ringing in my ears, irregular rapid heart beats, dizziness, depression, and reddened, itchy eyes, accompanied by blurred vision.

I wish there was some miracle drug that I could take that would kill every last one of these Spirochetes that are ravaging my body. My prayer is that there will be a cure and that everyone will be freed from this devastating disease. Praise God!!!

Linda Susan

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