Nancy's Story
I have thought for a long time about writing my Lyme story, but something
kept holding me back. I thought for certain the first major attack was over
and that surely I would stay well. Unfortunately that's not how it
happened. Hopefully by all of us sharing our stories, someone who is
searching for answers will find them like we (the Lymies) did, and take
heart that they are not alone.
In June 1995 my daughter graduated high school; what a wonderful time in
our family. We had moved to our new home in Sussex County, Delaware, in the
woods, just a couple of years before. How I loved the woods, the deer, the
ducks, the geese, the pond -- beauty and serenity everywhere. Life was good.
We were building a screen porch, I had returned to college to work on my
associate degree in Human Services. When I reflect back on those days, it
amazes me how this disease has crept into so many areas of our lives. My
daughter had been sick in May and been tested postive for mono.
She was
really struggling with fatigue and general achiness, sore throat, etc.
Around the same time I was getting ready for my evening shower and found a
tick on my abdomen -- attached. I removed it and put it in a plastic bag,
just in case. I had no symptoms at that time, but did have a bull's eye red
rash at the site. The next morning the rash had spread and the area was hot
to the touch. Still no symptoms, but I called my family doctor. She looked
at it and said it could be Lyme and that since the tests took a while to
come back, she was going to give me the standard course of treatment of
doxycycline for 10 days.
She threw the tick in the hazardous waste
container and off I went. I took my doxy and thought, thank goodness I was
on top of it and got treated fast. I had read an article and knew I didn't
want Lyme disease. Unfortunately, it was about 6 or 8 weeks later, while I was in
college and busy at work, when symptoms of horrible
fatigue, joint pain, achiness, and eye twitching started to hit me. I blamed the tendinitis on my
job, the muscles on my weight and sedentary job, and surely I must have
mono with this ungodly fatigue.
I have never been so weak. Unless one has
experienced Lyme fatigue, it just can't really be put into words, other
than that I felt like my life force was being drained out of me, and that this
must be what dying felt like. After multiple visits to the family dr. for
these symptoms, she referred me to an infectious disease doctor. The soonest
I could be seen was 6 weeks. Of course 10 days before I was to see the new
doctor I was feeling much better, which confirmed my thoughts that this must
have been mono or some kind of virus that ran its course. The doctor's
office said since I was better there was no need to come in.
1996 - The next stage seemed to hit; horrible muscle weakness, tendinitis in
my right wrist and elbow. Then, tendinitis in my shoulder. Physical therapy,
anti-inflamatory meds, cortisone shots; no major relief. Finally, in June
1997 (after the orthopedic doctor had asked me three times,"You have had the
Lyme test and Lupus test, right?"), I kept telling him that I had been tested two
or three times in blood work, and it came back negative everytime. By June
1997 the tendinitis was so severe in my right elbow and rotator cuff,
that surgery was the only option left. I said no, not till I finished college in
August.
That summer I got on the internet and researched Lyme disease, since
the orthopedic doctor kept bringing the subject up. I found out how
unreliable the blood work can be, especially if you've had cortisone. I saw
another person in the chatroom talking about a LUAT. I found out that it tests
for Lyme antigens in the urine. I went 50 miles north to a bigger area and
found an infectious disease doctor to discuss the last two years worth of
problems, expecting the usual: it's depression, it's stress, it's your
weight, it's aging (I'm 44), the excuse dujour. Thank you Lord, that you
answered my prayers and I had found a specialist who really listens and
evaluates the whole picture. He ran the LUAT and several blood tests.
All
blood work was negative: Lyme titers, Western blot,and the Lupus and Rheumatoid
tests. But, the LUAT was positive. Finally I was vindicated. But now what?
He put me on oral doxycylcine for 2 months; no relief, then went to 30 days
IV of rocephin by PICC line, which actually made these symptoms flare. Now I
had burning nerve endings in my feet, followed by another 4 months of
doxy. I finally had relief by December 1997. YEAH, I was cured! I had my
muscle strength back, no more tendinitis, no problems in any of my joints,
no burning in my toes and feet.
April 1998, I noticed some of the symptoms seeming to return. I tried hard
to ignore it and just believed it was overuse, the weather, anything but
Lyme. I had beaten it, right? The weakness in the muscles got so bad I was
afraid I had MS. Then the word thing was happening; trouble coming up with
simple words, trouble remembering names, all those weird unexplainable
symptoms -- the eye twitching for about a month everyday which just about
drove me nuts.
June '98, I was in Exton, PA for a week long training in
Reality Therapy, and got horribly sick on the the second day there; 103
fever, uncontrolled diarreah, had to have family come get me, went to the
doctor got meds, no help, ended up in ER getting IV for dehydration. All
lab work was negative, but now looking back I wonder if the 6 days of that
were actually related to a relapse of the Lyme or reinfection. By the
Winter of 1998 I finally gave in and went back to my infectious disease
doctor.
He ran the LUAT and this time it was twice as high as the original
test in '97.
Don't ask me what that means. I don't think I want to know.
I went back on oral antibiotics in January '99 and stayed on them for four
months, then IV rocephin again which I just finished June 4th. Now it's back
on oral Vantin, which has hurt my stomach, so I've stopped for a while. I
seemed to be having so many more cognitive problems this time:
forgetfulness, unable to concentrate and stay focused, easily distracted,
more anger, can't come up with the little three letter words, switch words,
transpose letters when hand writing. I was sent to a neurologist. He ordered an MRI,
sleep lab study, and neuropsych exam. The MRI was clear, mild to moderate sleep apnea,
given one of the machines to keep airway open.
The neuropsych shows no
problems with cognition, or learning, or IQ. I asked the doctor if that's the
case why can't I recall three letter words, etc. No real answer. MMPI
(personality test) shows somatoform disorder (I seek medical answers for my
psychological problems according to the test results), which I knew would
happen if I answered the questions honestly due to the nature of the
physical symptoms of Lyme, that I've had over the last 4 years. Of course
the fact that I've been in counseling for childhood sexual abuse,
depression, and anxiety, made that diagnosis seem obvious.
I can't imagine
why anyone who has battled this stinking disease would be depressed, anxious
or angry. Surely most people love taking antibiotics for years, battling
yeast overgrowth, stomach problems, not to mention unrelenting Lyme
symptoms. Thank God again, that I have a wonderful counselor who understands
the physical problems of Lyme and a psychiatrist who does my meds for the
depression, who knows about Lyme as well. They have been wonderful support
during this time.
My family has been very strong through most of this, but
of course, like me they have their times wishing it was all a dream we would
wake up from. The physical problems seem to have been greatly helped this
time by the IV and I am hopeful for continued healing. I have continued to
work full time as an employment counselor and managed to finish the
associate degree. I really want to do the bachelor program, but I am
concentrating my energy on wellness right now. I still struggle with
wanting to sell and move, and not because the woods has also been a healing
place for me.
I just want to reassure anyone reading this that you are not alone.
However, with the current conflict in the medical community and insurance
industry regarding Lyme disease, you MUST advocate for your health. No one
else will. I pray for continued research for Lyme disease, for accurate
testing, a way to kill the bacteria for good, good insurance coverage, a more
informed medical community, and doctors who listen and care.
Nancy Brown (a/k/a Liz)
The Lyme Disease Quilt Page
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