William's Story
I don't really know how to start this letter except to say I have been sick for two years.
In September 1998 I was working on a movie that took place at the edge of a swamp. We were filming at a wildlife preserve that was a rice plantation in the early 1800s. Plenty of wildlife: gators, snakes, you name it. But one of our worst problems was the insects. We sprayed, fogged, used sprays containing Deet, and we still got eaten up by insects.
Ticks were a major problem. Almost everyone on the crew had at least one tick on them before we finished filming. I had five tick bites before we finished.
In September, we had a tropical storm move through the area and everything got flooded. We were in water up to out waists trying to get equipment to higher ground. I was unable to get out of my wet clothes for eight hours.
When I did get a shower, I found another tick attached to my hipbone. I removed it and didn't think anything about it. The next day the place on my hip looked like a bruise. The following day it had gotten larger and looked like a bull's eye.
When I saw this I went to a local 'urgent care' doctor. He looked at it and said it looked like it might be Lyme Disease. He gave me antibiotics and said it was nothing to worry about, that the antibiotics would take care of it.
For the next few days I felt like I had the flu and ran a fever for a couple of days. After I got over these few days, I felt a little better but not good. I finished the antibiotics and didn't think anything else about the tick bite. The production office of the movie had printed out a site on the Internet that said Lyme was no problem and that ten days of antibiotics would take care of it.
I finished the movie and was going to take the next couple of months off. I didn't feel good at this time but I didn't feel bad either. I figured I was just tired from all the long hours I had worked. I felt tired all the time, slept a lot and couldn't seem to get 'rested up.' My joints started hurting when I walked.
For the next couple of months, I was feeling worse and worse.
I started having problems breathing. I couldn't walk a block without getting out of breath and having to stop and rest. It got even worse. When I tried to lie down at night I couldn't breathe at all. I went to the doctor who said it was pneumonia but when they took x-rays, nothing showed up. They took a second set to be sure. My lungs showed clear, but I couldn't breath.
My oxygen level was 96 which was normal. They couldn't find anything wrong so they put me on antibiotics again. I started to feel better after about a couple of weeks, not good but better.
I spent the spring and summer of 1999 going to doctors. I told them about the tick bite and what the 'urgent care' doctor had said but they kept telling me there was nothing to worry about since I had taken the antibiotics.
My joints were hurting more now and any exertion caused very labored breathing. By this time I had seen several specialists who had done blood tests and said the test was negative for Lyme. I found out later that unless the blood test was done before the antibiotics, Lyme would not show up. They could find no cause for the joint pain, staying tired and sleeping all the time, and my breathing problems.
By the start of 2000, I was getting worse. I live on the coast of North Carolina and my house is built on pylons so I have to go up and down the stairs every time I go anywhere. It got so bad that when I would go to get the paper out of the yard , I would have to lie down when I went out to get the paper.
By this time, any exertion at all bothered me. My wife had to help me out of the bed. After taking a shower, I'd have to rest because I'd be so exhausted, and my breathing was very labored.
My sleep patterns were really messed up. I would be awake for a day or two, with no sleep at all or I
would sleep all the time. About this time, I went back for yet another doctor's appointment. I still had the joint pain, tired, still having problems breathing.
When I got to the doctor I was having some pain in my chest. She looked at me and sent me, by ambulance, to the hospital. I was seen by a heart specialist, had a heart catheterization, MRI, more x-rays and tests. All the tests came back negative. My heart was fine. They could find nothing wrong, AGAIN.
I was next sent to an Infectious disease specialist. I told him about the tick bite and he said there was no Lyme Disease in North Carolina. He also said he didn't think Lyme was a disease, just a misdiagnosis
of other problems.
In March 2000, I had another bad experience with my breathing. I would go to bed at night not knowing if I would wake in the morning. I felt so bad by this time that I really didn't want to live like this. I can't work, my wife works and looks after me, my son has to do all the physical work around the house. My friends have noticed the change in me and say my skin looks gray. I had no color and no energy.
I had lost almost all my will to live. I mean who wants to live when all you do is walk down the hall and watch TV? I wanted to be outside planting flowers, mowing my yard and fishing, and I can't do any of these things now. I live 3 blocks from the ocean and use to walk there; now if I want to go I have to drive.
I now go to the doctor very seldom. After seeing all these specialists and taking all these tests, they still cannot diagnose what is wrong with me. Every time I bring up the Lyme Disease, the doctors don't want to discuss it.
My wife had changed jobs and now her insurance will not pay, since I have a "pre-existing condition."
My 2 day hospital stay was over $10,000. This combined with other medical bills ii over $25,000.
How can the insurance company say it is pre-existing if they don't know what it wrong with me?
A friend called me the middle of April and said I should start taking an isotonic vitamin product that she was taking. She had had cancer and it was really helping her. She also said that someone she knew with Lyme was taking it and was doing better. At this point, I was ready to try anything so I started taking it.
It has really helped me. I still can't do a whole lot, but I am better. Not good, just better.
The pulmonary specialist who had seen me called and wanted to do a follow-up visit. I went and it was very interesting. He said since I had been in, he had done some reading about Lyme and thought I should try to find a Lyme specialist. He even told me he thought I could find one in Pittsburgh.
He does not agree with the Infectious disease specialist in his group but he cannot go on record with his opinions. He said he has read all my records and can now see Lyme as the only cause but of course, he will not put this in my medical records.
As of now I am barely getting by. My small monthly income plus my wife's salary just pays for the bills. We only hope nothing 'expensive' happens.
If anyone has any suggestions regarding doctors, how to handle the denial of the insurance to pay, anything that can help, would be greatly appreciated.
I will say that the vitamin products have helped tremendously. I am not on any medication from the doctor except for 2 inhalers.
My wife said she would hate to think what shape I would be in if not for the vitamin product I am taking. It seems to be the only thing that has helped. If you would like to know about them, just e-mail me and I will let you know. If it has helped me, maybe it can help someone else.
Looking for advice, and thanks to all for listening.
William
The Lyme Disease Quilt Page
Please click on the mailbox to send me your comments
Lyme Quilt main page
Lyme Disease related links
Copyright ©1998-2001 The Lyme Disease Quilt Page
