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Betsy's Story

I got bitten on the heal in my garden last year, August 1st. I thought it was a spider bite. I immediately felt a "sensation" go through me. I never looked on my heal because the sensation was all over me. I never saw the tick but I did see a big blister perhaps where it had been (after a few days). I lived in a Lyme disaster area. Deer used to come right up to my door. (I moved this year.) In two days I got a fever, low blood pressure and heavy malaise--didn't want to move, basically.

The Emergency room showed up nothing (3rd day); by day 4 I got a rash which started on my foot from the heal. But I didn't know anything about Lyme rashes. I had been told to go to my doctor if I didn't feel better, so I did (got a substitute--mine was on vacation. And the sub treated the rash as eczema, even though there was a chart on his wall showing this exact kind of rash on the body, on a "Lyme" chart. I asked him to please test me for Lyme.

He said he doubted it was but that he would do so. In three weeks after that appointment I got multiple rings, some growing in front of my eyes (up to 9 inches, some small and only a few with bull's eyes). I STILL didn't think it was Lyme because I thought you only got one bull's eye rash.

However, I went to an ER again -- they immediately treated me for Lyme and the next day I went to my own doctor who said she had not received any test results for any Lyme test from the sub doctor (but when she saw my rings and heard the story she was sure I had it, and gave me a prescription for doxycycline -- the hospital had given me one for amoxicillin).

She gave me titer and Western Blot tests and all came out very positive, and by that time I was really feeling rotton -- fever, malaise, aches and all that; also a terrible time with memory etc. I got two courses of the med and in December one more course. I was out of work 3 months and by March, maybe was just about feeling myself, but thought old age was setting in early since I never did get all my old umph back.

All summer feeling tired and more so until I just couldn't stand up one day, fell down -- did not pass out, just couldn't move my muscles. From there to the hospital for two weeks and on major rocephin. I have a different doctor and different hospital this year and they think I need 4-5 weeks of this stuff. My MRI showed spots (Lyme) and I've had several neurologic things happening, but finally this week they've abated and I feel better.

I've had a lot of trouble finding words, and sometimes in the beginning couldn't process what someone was saying, or what I was looking at. I would also wake up with violent shakes in my head or body parts and couldn't stop my hands shaking, for instance. Very tired, dizzy, racing heart and just about everything everyone else says everyone gets etc. I was told this could come back any time the rest of my life and I've also been told it can be totally cured.

Also, before they came to the conclusion that it had to be Lyme, I also got a lot of skeptical treatment from some hospital personnel. Because my heart monitor and echocardiogram came back normal etc. A little bit of mixed messages. So, I'll just wait and see. And,I'm grateful for the rocephin.

Latest Update

For over a year now I've been declared Lyme free. I went back to work last year after 4 months off and after 5 weeks of Rocephin. It took me all year to regain my normal level of organization at home (2-3 months to get it together at work).

But, I've gone from taking an hour to count out my pills 3 times a day, to zipping around with my usual old speed and energy. I feel so alive and so LUCKY. I hope indeed it's gone. As I write this update (1/8/01) my very conscientious doctor is waiting for another titer test just to be sure. (I still get Lymey shakes when I sleep if I've been overtired--or after I've been flying in an airplane. I still don't get the full benefit after exercise.)


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