Kara T's Story
Kara Kyriaka Tyson
Huntsville, Alabama
Cost: $12,000 + Out Of Pocket
Lost Work/School: Ongoing
Number of Years Sick: 18 months
MY STORY
My name is Kara Tyson. I am 32 years old . In April of 1999 I was hiking on Monte Sano Mountain (a state park in North AL). 3 days after the hike I developed a red "bull's eye" rash. By the 4th day I was limping and had shooting pains throughout my left leg. I was treated with steroids for a possible spider bite and the rash went away.
6 weeks later I started losing bladder control. Tests for a bladder infection were negative.
I was sent to my OB/GYN since my symptoms were those of a prolapsed uterus. My doctor prescribed Codeine which I took 24 hours a day just to endure the pain. Every time I took Zithromax I regained bladder control and no longer needed the Codeine. But after the 5 day regime wore off I was back in pain and had again lost bladder control. After many tests (everything from PID to ectopic pregnancy) my doctor recommended that I see a urologist.
The urologist visit was of no use to me. The urologist said that what I was describing didn't make any sense. He agreed to do some tests but could not schedule me for another month.
I began to spiral downward with no bladder control, a constant fever, falling asleep at work. Pains in the right leg. Pains in my back. Pains in the neck. I could not sleep at night. I could not wake up during the day.
I sought medical attention (this time from a local clinic run by Huntsville Hospital) and I was told that I was "depressed". Not only that....I was in the "denial" that I was "depressed".
I am a former burn patient. I lost my children in a house fire in 1995. I spent nearly a month in the UAB Burn center being treated for burns over 60% of my body. I thought that the doctor would see that I was a very strong person not easily overcome by illness.
Unfortunately, what was written in my file was that "Ms. Tyson is in need of physiological counseling. She has needed this for many years." Wow! That is an incredible diagnosis for someone who has known me for 10 minutes!! I objected, citing that I got better when I was taking antibiotics. I was told that that was just the "placebo effect."
I was now in pain and scared. My pain medication was running out. Since I was "depressed" who would give me antibiotics?? Getting anti-depressants is easy in our society. Getting antibiotics is not. I was to the point that I would steal, beg or borrow what I needed.
I woke up every morning wishing that I was back in the UAB Burn Center because at least I would know that the pain would stop eventually. I asked God every night to let me die in my sleep I was in so much pain and could not get a physician to help me.
I did a search on the Internet of my symptoms. 2 newsgroups came up. Prostate & Lyme Disease. I knew the first was not my problem. The 2nd I almost dismissed.
Again I sought medical attention (from the same clinic) to be tested for Lyme Disease. I didn't know anything about the tests. Or what to ask for. I was given a simple ELISA. It came back negative. I was told by the receptionist that this was the only test for Lyme and that since it was negative I didn't have Lyme Disease. That their office had never had a positive Lyme Disease test.
I returned to the initial medical office where I was bitten by the "spider" to let them know that I thought I had Lyme. The nurse was very rude to me and rolled her eyes and said, "Did you see a tick?!!". I said no that I had not seen a tick or a spider. When the nurse left the room she shut the door with a smirk on her face. I could hear her through the door saying to the receptionist "She thinks she has Lyme Disease. Can you believe that one?"
In August (4 months after the bite) the Lyme Disease newgroup recommended a doctor 5 1/2 hours away. I went to him. I was positive on the Western Blot test for Lyme Disease. I am also positive on the LUAT test (Lyme Urine Antigen Test). I had had a false negative on the ELISA. I thought treatment would be so easy. It isn't. I am getting better. But it has been over a year and I am still sick. I have spent thousands of dollars out of pocket with no end in sight. I spend 36% of my annual income on Lyme since as a former burn patient I am unable to get health insurance.
I have a will of iron, but this disease brought me to my knees.
My greatest fear is that my hematologist will retire and that I will not be able to get treatment. I know that I am in good hands, but Lyme is a long battle.
Kara Kyriaka Tyson
Huntsville, Alabama
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