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MINNESOTA
Ann Anderson - I remember sitting
on my couch in June 2006. I had an itch behind my leg. I didn't
think anything more of it. A couple of weeks went by and a noticed a
mosquito bite behind my knee that itched horribly. That bite mark
grew to be 3 inches round and had another swollen red area 2 inches,
with a total of 5 inches round. It ulcerated. I went to the doctor,
they treated me for staph infection. Later that month I had an
appointment with my regular doctor who looked at the bite mark and
remarked that looks like a brown recluse spider bite. Well I did
research on the internet and decided that is exactly what it was. It
also said you could have recurring bites. Low and behold, a week
later I got 3 big red patches on my leg and it became very painful.
Again, doctors weren't quite sure what it was. At this time my
joints were aching horribly, I had a fuzzy, disoriented feeling, my
heart was skipping beats, and it felt like my throat was numb. I
asked the doctor to do a strep and Lyme test. Lyme turned out
positive twice. I was treated for 22 days with an antibiotic. After
this they tested me again, I am still positive. My nurse told me I
would always have Lyme and they do not know the long term effect on
a person. Well here I am today, 10 months later, my joints ache and
I haven't felt the same since I was first diagnosed.
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Carisa Gorak - It started about 4
years ago, waking up to get ready for work and I couldn't walk. I
couldn't remember doing anything to hurt myself, but I was in
extreme pain. The next morning I remember I couldn't feel my feet,
my arms and hands were numb, I thought I might be having a stroke or
something? That was weird, I was only 29 years old! This can't be
happening, I have two kids and I'm a single mom, who would take care
of them if something happened to me? Over the next 3 years I saw
many many doctors between Minnesota and Wisconsin and nobody could
tell me what was wrong. I was told I had everything from Lupus, MS,
Epstein-Barr Virus, Fibro., CFS., Parkinson's, and the list goes
on. I even had 5 Lyme Disease tests 2 came negative, 3 came back
inconclusive! My Primary wouldn't do anymore with the Lyme, he
wouldn't even listen to me about it anymore! I have had so many
MRIs and CT's that I could probably glow-in-the-dark by now! Well
it's been since last fall of 2007 and I found a doctor NOT am LLMD
who would listen and he did a NON-APPROVED Lyme Disease test on me
and guess what? It came back POSITIVE! I now have Chronic Lyme
Disease. I have been on IV Meds. since August of 2007 and I have
good days and bad days. I'm hoping that 1 day I might get back to
my normal life one day! I have just been "Officially" classified as
being disabled by the State of Minnesota at the age of 33, because
I'm no longer able to work because of the effects of the Lyme
Disease and the damage it has caused to my body. "WE AS LYME
SUFFERS, WE ARE OUR ONLY HOPE!"
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Tom Grier - Although I had a good
medical education background, I was completely blindsided by Lyme
Disease. Throughout the 1980s I had a good career, and a happy life
and no real concerns to worry about. All of that changed when in
1990 when I was told that I had probable Multiple Sclerosis. By the
Spring of 1991, I was on the waiting list for a local Nursing Home.
In addition to the MS-like symptoms I had with numbness and tingling
in my arms and legs, loss of coordination, and pressure in my head,
I also had Lyme-Carditis, cardiomyopathy, atrial fibrillation, and
loss of 70% of my visual field. I hallucinated, I heard voices, and
was in constant pain. My muscles burned, my joints ached, my face
twitched, my teeth burned like red-hot coals and I had fevers and
sweats that were so severe I soaked through my sheets, and often
became dehydrated. I slept endlessly, and could not read, drive, or
walk unaided. My recovery took years and now 15 years later I still
suffer from the aftermath of a treatable illness that went
undiagnosed because of a lack of knowledge among doctors and health
professionals. Since that time I have struggled to do what I could to
educate patients and doctors using science and supportable research.
For over 12 years I have run the Duluth/Superior Lyme Disease
Support Group, and have helped write legislation for Lyme, have
written numerous articles on Lyme and organized an MS-antibiotic
treatment study in Pine County MN to see if more MS patients like
myself would respond to antibiotics. We found 3 out of 26 had
immediate and recognizable improvement with 3 months of antibiotics.
But a 4th patient had a full recovery after 15 months on
amoxicillin. We now intend to do another MS-treatment study treating
for 1-2 years. Lyme changed the course of my life and I have paid a
dear price for medical ignorance. I wish I could say I am the only
one with this story, but my story is still being repeated everyday.
So I keep praying for three things to happen: 1) Better medical Lyme
research and more human studies 2) Better drug delivery systems to
the brain 3) A worldwide acceptance by the medical community that
Lyme disease is a complex disease that often defies simplistic
diagnostic tests and treatments.
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Caroline Nobach - On July 15 2005 I woke up and my life had
changed drastically. I had intense emotional feelings, fatigue and
overwhelming fear at my inability to concentrate.My thinking ability
had disappeared overnight. I remember going for a walk and ending up
in my backyard staring up into the woods and breaking down in tears
at the drastic upheaval I was experiencing. It wasn't me, something
had taken over and I couldn't help but feel overwhelmed with the
change in my body and especially my mind. My heart was racing and I
just felt something very serious was taking over my mind.
Fortunately after five different doctors at Cannon Falls Medical
Clinic and two emergency room visits spanning a 6-week period the
mention of a very red spotty rash on the back of my arm resulted in
a doctor's request for a Lyme test which was sent to Mayo clinic and
came back positive. I was treated with doxycycline. My symptoms were
so puzzling to some doctors and nurse practitioners, that I remember
being referred to Goodhue Mental Health and another suggestion was
to talk with my pastor. I sounded psychotic. My heart rated, vision
problems and lack of concentration sounded pretty vague. I know that
my persistence and writing everything down that I could think of
before a doctors visit is what helped with the suggestion for a Lyme
test. During this ordeal I had to cancel a trip to California to
visit my family because I told them that "I wasn't sure I could get
off in the right state". I truly support research and awareness of
Lyme disease so that we can help stop the unnecessary suffering from
its terrible affects.
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