David L. Amole
Berks County, Pennsylvania

Total cost: $6,000
Number of family members with LD: 1
Lost work/school: 6 months
Number of years sick: 2

Hi, my name is David Amole and I have had Lyme disease off and on for 14 months out of an 18 month period. In April of 1996, I didn't feel good for two weeks and had severe headaches, nausea, felt dizzy, and my joints ached. I went to the doctor and he said that I was just probably tired and stressed. The day after I went to the doctor I took a shower and in the mirror I saw a "bullseye" on my buttocks cheek. At the time I was relieved because I thought I "only had Lyme disease". Boy was I wrong.

That doctor gave me antibiotics that I was deathly allergic to, but I figured that out on my own because he figured it was the Lyme making me that sick. He gave me a different antibiotic but it was the same base medicine and made me sick again so I switched doctors. The new doctor put me on antibiotics for a month and said that the Lyme disease was "now you see it, now you don't" so I didn't feel good and I was waiting for the symptoms to go away on their own. I didn't feel good throughout the winter of 1996 but I just thought that was the way it was with Lyme. Then in March 1997 that I got all of the beginning symptoms back again. Headaches, nausea, dizziness, neck hurt so bad I couldn't move my head, knees hurt so bad I could hardly walk, I missed a lot of work AGAIN, called the second doctor I went to the First doctor and he said he would give me a blood test. Blood test showed positive for Active Lyme Disease. He put me on an antibiotic immediately. I told the doctor that I wanted to see a specialist. I saw Dr. ****, a specialist, but before he could see me I was on antibiotics for 10 days and he wanted his own blood tests. His blood test came back negative because I was on an antibiotic for 10 days previously. He said I didn't have Lyme disease and wanted to test me for MS. The test really showed a false negative.

By that time we were on-line with ALDF and AOLyme and the Lyme Disease Coalition and had information saying being on antibiotics before the blood test would make it come up a false negative. I still had all of the symptoms plus somedays my vision was good and some days it wasn't. The ALDF referred us to Dr. **** in Easton, PA. It's 120 miles round trip to Dr. **** but he is very good with Lyme disease and didn't treat me like I was crazy in the head. He understood all of my symptoms and problems because the patients he deals with and he personally knows a doctor with Lyme disease. I am presently on ceftin 500MG twice daily which is $348 after insurance co-pays. I have had numerous blood tests, antibiotic prescriptions, doctor visits which insurance is not willing to pay for. They deemed some of them unecessary. I have been on antibiotics for 6 months so far this year, missed a lot of work, thank God my wife and I run our own business at home, I developed muscle twitches, on medication for that and am also being treated for severe depression. I asked Dr. **** how people who work in factories or people who are not in their own business with Lyme disease get through dealing with the disease. He said he saw people lose their jobs, lose their homes and lose their families because no one understands the disease. As far as my situation with my job and my wife, I think one of the big things that is helping us is that fortunately through our business we have a computer that is on-line and through that we got Dr. ****'s name and talk to many, many other people in my situation over the internet.

We don't know what's in store for the future. Dr. **** said it could reoccur yearly for a minimum of 5 years, not at all or reoccur forever. We don't know what permanent damage, if any, is possible over the years. I can't do my normal daily routines anymore. We have to get people to mow the grass, plow the snow, paint the house, etc. because I am not able to do the things I used to before I got the Lyme disease. My body won't allow me to. All I know is that Lyme disease is a horrible disease and is not "in my head". I used to have a happy, active lifestyle but that is no more. I haven't found an eye doctor that understands Lyme disease yet. I ave "floaters" and "blurry spots" that affect my vision but the eye doctors never give me a solid answer about it. I think it's because they don't understand Lyme disease.

Lyme disease has definately changed my life .. and definately not for the better.