Steven's Story
In 1986 I was visiting Colorado near East Park at the Mount Olive Ridge
camp ground, in the Roosevelt National Forest. I remember the tick. I
attempted to scrape it off and the head of the
tick got stuck under the skin on my leg. I didn't do too much about it
and a few days later I ended
up in the Emergency Room. They said it was Rocky Mountain Spotted Fever
and sent me on my
way with some med's. I got back home and was still sick. From that
point on I was sick off and on
for years -- everything from sinus infections to kidney stones.
I seemed to be going from doctor to
doctor, each one treating me for whatever I went in for, but not finding
the underlying problem of why
I was getting sick all the time, missing work and college classes. All
the time I never thought that the tick bite would have anything to do
with this. I ended up having a couple of surgeries, some which were
later considered unnecessary (but I cannot blame them because they
were treating me the best they knew how, then). It wasn't until I moved
out of state to California for a new job, I was heading up the ladder
in my Criminal Justice career. During this I was getting sicker and
sicker as months-years went on. I would go from doctor to doctor
because I wasnt happy with the
results.
I knew in my own mind that it wasn't just a sinus infection. There
had to be more to it, because
I was having a lot of problems: sinus infections, muscle, joint, eyes, headaches, dizziness, tired all the time, memory problems - one word
recall, etc etc etc etc etc etc.....
It was 1995 now, and I'd finally found a doctor (California) who said he was
going to test me for all types of things. He asked if I had ever been
bitten by anything. I said yes, and showed him the scar on my leg from the
tick bite. He asked if I had a rash with it. I said, "yes, you can check
the ER report," which I sent to him later (I always made copies of
medical records).
I went back for my blood results and while the doctor
was reading over the results, I could see him puzzled, as he stopped for
sometime on one page. He said my results were normal and that I
should stay on my medications. As I left the office I stopped by the
desk and got a copy of my records. I went home and saw sections that
said high out of range. One said Lyme disease. I called the lab and
asked what this was and what it meant. After finding that out, I made
another appointment with the doctor. He said that it didn't mean
anything but would retest me for my own sake.
I went back and that
doctor had left the practice so I had to see another one. This doctor came
into the room and said that I didn't have Lyme disease (never had it and never
would have it, and said that I was to see a mental health specialist to learn
to deal with my
chronic sinus infections). I left stunned and jolted -- I'd never felt so
bad in my life. I was a mental case;
at least that's what I was told (there is a saying in the Lyme
community - you know you have Lyme
when you're told to see a psychologist).
I got those results after I left, and they also said high out of range
for Lyme disease. I went to another
doctor sometime after and was tested again -- and again, the same results.
Then I went to another doctor who tested me again and again, and still more of the same
thing. I began to study up on Lyme disease. I found a specialist but
it was some distance from were I lived. I ended up making an
appointment and
saw him. After several visits and treatments I was told I had Lyme
disease.
Due to the drive I was told about a doctor somewhat closer to
me, who also specialized in Lyme. After several visits and treatments,
I was diagnosed with chronic Lyme disease, chronic fatigue, peripheral
neuropathy,and fibromyalgia --
among a list of other things the other doctors had diagnosed me with.
After a long time of treatments I was still getting worse, and every time
something new came up I would never go back to the
same way I was before. I was now an unemployed, legally disabled, young
adult, and losing my health.
I struggled everyday with one or more problems. I decided to see an
expert in the field to see if I really had this thing, and what the
future held for me. I went to Boston and saw an expert
in the field. I ended up being diagnosed with chronic Lyme disease,
among other things.
Today, I see a local doctor who is treating me for my major problems,
and consulting with the doctor in Boston for Lyme related issues.. If
I went in for everything that bugged me, I would end up living at the
doctor's office.
There has been a lot that has
happened to me since 1986 'till today, 1-99. I am familiar
with the west coast and how it deals with Lyme disease. I feel that I can
lend a hand and offer some ideas. More importantly, I would like to help organize more Lyme support groups here on the west coast, and help to educate doctors, patients, someone who might think they have Lyme
disease, and anyone interested in learning more about this illness. And you
don't have to live directly on the west coast (western states). If you
need help or wish to help out with this cause, please email me.
Steven
Check out the web site:
Lyme Disease -- The West Coast Connection
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
