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VIRGINIA
Jennifer Boyle - I was
misdiagnosed 10-plus years....the usual drill: MS, Lupus,
Fibromyalgia, etc. My life has been saved by my current doctor...I
am positive of that.
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B Bradford - Can you add my children too, A. Bradford and K.
Bradford - born with lyme - 11 and 13 years old and struggling
psychologically
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Sharon Dexter - By the Grace of God, I'm here today to tell my
story - short version only. Back in 1995, my co-workers were quite
upset that I could not manage them as I'd been doing for the past 3
yrs. I had already noticed that they were trying to ease my
workload, but something was definitely different. I went to my
family physician, telling her I thought maybe I had a brain tumor,
the neurological signs were that bad! After a series of tests, she
thought I had Fibromyalgia, which I do have. There was still
something that I couldn't quite put my finger on that was wrong & I
knew it was more than brain fog! Over many years of visiting
neurologists (in tears) & rheumotologists begging for help (at this
point 1999), I couldn't even fill out a doctor's form or any of the
required paperwork for seeing a new doctor; I gave up. Depression
was so deep that I felt I physically had Blinders on! It wasn't
until 2001 that my family physician suggested that I visit another
rheumotologist for an extensive workup. She guaranteed that I would
be listened to and respected as a human being. I was! It took a few
months, but that doctor finally came to the diagnosis of Lyme
Disease and started me on treatments right away. My family physician
was a doctor who had been diagnosed in 2000 with Lyme and waited
until she was treated until she felt it safe to send me to her
doctor. God Bless both of them for having the courage to stand up
for me and to be my advocate in my battle with Lyme. By the Grace of
God, I wrote this story! God bless all of you!
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M Harrington - I got a rash in
August 2005 from what I thought was a spider bite. It didn't look
like "bulls-eye" to me. When I called my doctor about it, she didn't
think it was serious. Several weeks later, I looked up Lyme on the
Internet and saw rashes that looked just like mine. We hear a lot
about West Nile Virus in our area. In fact, the news media sounded a
panic about it a few years ago. Yet I had never seen any TV news
stories in the Washington, DC metro area about Lyme and how to
protect yourself from it. Lyme is real and it is nearly everywhere.
It is also a serious illness and not always easy to treat. Because
of esophageal problems, I am having trouble taking oral antibiotics.
I take things one day at a time. I wish I knew one year ago even 10
percent of what I know now about Lyme. We need to educate the public
and our government about how Lyme devastates individuals and
families.
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Karen Hausfeld - along with
weight gain. Another med for acid reflux/stomach/IBS, also "stress".
Next, asthma...inhaler, nasal drops, allergy pills/Rx eyedrops.
Migraines came 3x week and it was difficult living (can't drive or
function on migraine meds), then a daily dose of anti-seizure meds
was added. My joints began disintegrated & required surgery -
wrists, elbows, rotator cuffs, spinal cervical (neck) disks as I
lost connective tissue. I forfeited volunteer work, and was unable
to work for long periods of time. Still tests (including Lyme) came
back negative. Doctors (even a neurologist) had no idea. August 2004
my then-17 year old son complained his arm was numb. Within minutes
his face was numb and speech became difficult. We rushed him to the
ER & by the time he arrived, he was unable to walk, and became
completely paralyzed. He was intubated & induced into a coma to run
an MRI, because he was unable to breathe while lying down. He
remained in ICU, intubated & in a coma, for a week, while every test
available (including Lyme) was run. Every test was negative.
Continued testing by his neurologist & infectious disease
specialists brought nothing. Tony had to re-learn to walk, write,
and function. He has been exhausted, had migraines, joint pain, you
name it. His barely graduated from his senior year of high school. I
saw Tony's neurologist & he dismissed my complaints. A friend
referred me to a doctor who had treated her sister-in-law for Lyme.
Despite my earlier negative tests, the doctor diagnosed me as a
classic case of advanced Lyme, with co-infections. I have been on
oral antibiotics for 16 months & have had two rounds of daily IVs,
plus 10 weeks of another IV. There are times when I can actually eat
again and for the first time I see a light at the end of a very long
tunnel. That's not the end of the story. On a check up with the
doctor my son mentioned he was paralyzed the prior August. She
immediately said Lyme can present that way and wrote a script for
IGeneX testing. Tony tested POSITIVE for Lyme! He also received 6
weeks of IV treatment and has been on oral ABX for almost a year, &
is now in college part-time. He sees a light at the end of his
tunnel too...at 18 years of age, you should never be in a dark
tunnel. We still remember what we "used to be like", Eyeores who
used to be Tiggers and we want our lives back! I am an MBA, but
cannot work because I have no stamina and suffer from "brain fog,"
constant pain, & emotional ups and downs of advanced Lyme. This has
been the case for years. My family's finances are a shambles due to
the increase in our medical expenses. Yet I live in hope that I
might one day have some of my life back because I was finally
diagnosed & got treatment.
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Christopher P - Got infected in April of ’05. Noticed a
bull’s-eye rash on my right leg; I had no idea what Lyme was so I
ignored it. A few days afterwards I had flu symptoms, and then a
cough that lasted for two months. Again; I just thought I was sick
and went about with my normal life. Then in June ’05 I was standing
and my heart suddenly started messing up, and I wound up in the
hospital. I went to a cardiologist and to the ER two more time
because my heart kept messing up; no one knew what was wrong. It
would beat irregularly, and fast. After three weeks it went away,
and was assumed to be a virus. Well, one morning in August of ’05 I
woke up and both of my legs were numb. Rushed to the ER, and had a 2
hour MRI done checking for MS; the test was negative. They dismissed
me from the hospital and told me to see a neurologist. Shortly
afterwards I started getting muscle twitches all over the place, and
developed meningitis symptoms (extremely bad headache and stiff
neck, and fever.)
Since then my symptoms have spread everywhere. I have/had memory
problems, “brain fog”, vision problems, ear problems, dizziness,
headaches, stiff necks, joint pain, muscle pain, stabbing pains,
numbness, pins and needles, itching sensations, stomach problems,
horrible GI problems, panic attacks, heart murmur, mitral valve
prolapse, insomnia, weight gain, fatigue, anger, depression, mood
swings, low body temperature, and the list just goes on and on and
on. I ended up seeing 9 different specialist (two nuero, one cardio,
one GI, one eye, two infectious disease, and two rheumatologist)
before I found a Lyme literate doctors. I am on IV antibiotics right
now, and pray that I can start to feel normal again. I don’t even
remember what normal feels like anymore.
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Susan Pyne - 1995 Lyme - 6 months
antibiotics. Resolved. Subsequent development of migraines, stiff
neck, hearing loss, short-term memory problems, 5 root canals, hot
flashes, cognitive problems. 2005 migratory joint pain - Lyme again
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M. Veiga - Took 4 years and 6
doctors to diagnose correctly. Feeling good after 2+ years on
antibiotics! Praising God for a great doctor and great support
system.
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Dianne Vogt-
I currently live in PA but I was living in VA when I was
MISDIAGNOSED with fibromyalgia so that is the city and state I
listed, "for the records". The raw-looking red painful sore appeared
on May 17, 2003, but I'm not sure if that's when I was originally
"bit". That day just happens to be when I saw and felt the pain for
the first time. It was a Saturday so I went to the closest hospital
ER and their "treatment" was not only worthless but downright
NEGLIGENT. They did NO CULTURE and NO BLOOD TESTS to try and
determine what they were "treating" me for BEFORE giving me an Rx
for an antibiotic. It WASN'T just a tiny spot. It WAS obviously
painful and should have been taken VERY seriously. The only thing
they did right was give me an Rx for a pain medication, just enough
to hold me over until Monday. Since they made no attempt to
"diagnose" the problem, I should've been given the pain medication
and NOTHING MORE. Their negligence that day prevented me from
getting an accurate diagnosis because they started me on an
antibiotic without doing any tests. The doctors I saw in the
following weeks didn't even seem concerned enough to do a culture or
blood tests until I eventually INSISTED on the blood tests, weeks
later. The ER records claim it was an abscess and/or boil. The
doctors I saw in the following weeks and months "guessed" at a
diagnosis of a spider bite. I became too sick to work, moved back
"home" to PA in July 2003, and continued to receive treatment for
fibromyalgia. On December 13, 2006, (about a month ago) I finally
got a "real" diagnosis of Lyme Disease from IGeneX lab in CA. I've
been started on long-term doxycycline but, so far, I've seen no
improvement and I'm not sure I ever will. I'm relieved to know the
truth but I'm ANGRY with the ER, the doctors, and the government for
letting this happen to me. I want some justice and I'm ready to
fight! Thanks for listening to my story.
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