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Yes, I have lyme. I became aware of a rash on the calf of
my leg, which was unusual in that it did not itch and it
took up about ten inches of the inner part of my left calf.
About two weeks later, over Memorial Day weekend (2006) I
had several muscle spasms in my right arm accompanied by
weakness. It made me quite crabby because I am right handed
and it made simple things like blowdrying my hair and
closing the truck door really difficult.
Four days later, I experienced severe muscle pain in my
back, enough to make me cry because I knew something was
terribly wrong. It wasn't like the normal aches you feel in
middle age. The next afternoon, I had this growing feeling
that something was very wrong and increasing joint pain. By
late afternoon, I called my primary physician but they were
already gone for the day. I made a quick decision to go to
a walk in clinic, where they took blood and examined my
rash. They didn't think it looked like a bull's eye rash,
but already I was certain it was Lyme disease. The doctor
at the walk in prescribed 200 mg of Doxycycline for 28 days.
The next week, I saw my doctor, who had the results back
from the lab. He thought my rash was a blood clot and
arranged for an ultrasound of my leg. The results were
negative for a blood clot. He told me my blood work was
normal. He would not extend my prescription for the doxy.
The office staff arranged for an appointment with a
rheumatologist. Her tests three weeks later came back
negative for lyme and rheumatoid arthritis.
In the meantime, crushing joint pain made my life
miserable. I told my husband that he would either have to
help me up the stairs so I could go to bed or I would have
to start sleeping in the bed our daughter left behind when
she moved out. I simply could not get up the stairs.
I missed the last day and a half of the school year at the
school I work at. I did not pack up my materials and books
for the summer. I just left with the promise I would take
care of those things later in the summer when I felt better.
Traipsing from doctor to doctor, I saw five doctors during
the summer. Then someone on a lyme yahoo group suggested a
doctor in Milwaukee who knew about lyme. I saw him August
28th; based on my symptoms and exposure to ticks, he made a
clinical diagnosis of lyme disease and set up an appointment
in two days to start IV treatment. This was on the first
day of school.
After trying to work and adjust to IV treatment (Rocephin)
and oral antibiotic, Flagyl, I found the principal at my
school unwilling to allow me to leave at the end of the
school day so I could rest or drive the hour plus drive to
my doctor. I went on medical leave so I could get the rest
I needed.
A very difficult decision, because I am a speech therapist.
Because of a shortage of speech therapists, I knew my
students might not get any therapy at all while I was out.
Now it is four weeks later. It has been seven weeks since
I first started real therapy for my lyme. I am off the IV
therapy and on oral antibiotics. I am doing better, but the
fatigue is ongoing. I return to work in two weeks and I
know the days will be long and difficult.
If I had been able to get a proper diagnosis and timely
intervention, I would likely have been mostly or fully
recovered by the end of the summer. As it went, it extended
my suffering and deprived my students of the therapy they
needed.
I know my story is nowhere as difficult and painful as those
who have waited much longer for diagnosis and help. I knew
what I had right away because of our lifestyle in the woods
and our participation in outdoor archery. I had the summer
off to research on the internet and learn about lyme
disease, which aided in finding the proper doctor.
I am not well yet. I wonder how long it will be before I
am. I worry about residual effects. So many people
relapse. None of these concerns would be an issue, if I had
gotten the proper treatment early in the summer.
Cheryll Nelson Wisconsin
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