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MISSOURI
Beth Davis - Misdiagnosed many years. In 1978 I was told I
had rhuematic fever and as a result now needed treated for juvenile
arthritis, depression, emotional issues, fibromyalgia. Diagnosed
with lyme 2001. I am told I may never have had rhuematic fever;
having tick fever instead.
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Susan Kemp - I contacted my lyme
bite in Clay county. I have heard from friends that they have a
relative that is infected so there are many more people here then
the statistics say. There is lyme in Missouri and I hope people read
this and take the proper precautions with their loved ones. Of
course I was misdiagnosed while my health spiraled downward, over
and over again. I am at the bottom now and fighting my way back up
thanks to a lot of people that stand up and call it like it is, if
it were not for their on-line support I would not be on the road to
recovery.
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Tamara Owens - I began my Lyme
adventure in Topeka, Kansas, and I believe nine people were infected
in 2003 in Kansas. I often wonder if moving to New England would
benefit my medical process, but that seems a dream of Oz. I woke up
July 5 about 5:30 a.m. Much to my surprise, I could not move my
neck. It was not stiff or sore, but locked up completely. It took me
thirty minutes to curl up, roll over and do a push-up in order to
get out of bed. I drove immediately to the ER. The doctor decided I
had torticolitis, the first misdiagnosis in a line of many. My neck
did loosen up after about 3 days, but then things got worse. My left
knee was swollen and tingling. I have had problems with my right
knee since I was a teen, but never my left. I was sent to a
Rheumatologist. I really got the impression from him that I was too
mobile and too young to waste his time. So after a brief range of
motion exam, he sent me on my way. By the end of July I began to
feel assaulted by an invisible enemy. Within two weeks of the
locking neck episode, I was faced with a numb and swollen right hand
ring-finger, a left thumb that felt as though I hit it with a
hammer, all of my muscles seemed to move into rigor mortis and my
brain was on half capacity. A week after this I had to huff and puff
and scream to work up enough adrenaline to get out of bed. It was
simply too painful. After 3 days of that I started sleeping on the
couch. While everyone else was busy running this test and that test,
I was busy on the internet... EVERY day. I was scared. I searched
for hours to match my symptoms to anything, a simple logical process
that has since become a way of life. My Rheumatologist seemed
offended that I gave him a list of possible offenders. He sent me
for a spinal tap. My mobility started to fade. My knees would not
bend normally, my right arm was only comfortable in a sling position
by my side and no matter how hard I tried to use mind over matter,
my body quickly told my mind that it did not matter. I stayed
upright, but it was a painful fight to do so. I was now existing on
Skelaxin and Neurontin. My primary doctor said the Neurontin was a
seizure drug, but seemed to help nerve stem pain. I had to sign up
for FMLA [family medical leave act – U.S. Dept. of Labor] at work.
The attendance policy was very strict and I was about to lose my
job. Between the appointments, fatigue, pain and medication, I was a
shell of myself. The cut-back in hours was a cut-back in income. I
had to move in with an ex-boyfriend to save money. My independence
was checking out at the door with my health and mobility. August
passed by with a litany of tests and supposition. The tests that
were coming back “ok”. Nothing was wrong with me. I told them to
keep testing. Finally, one day in early September, I asked the
Rheumatologist to test me for Lyme disease. I think he laughed
quietly to himself as he pompously questioned why I would think
that. That it is “rare” in Kansas. I told him I was in the woods for
many hours in June. He wanted me to produce my bulls-eye rash. I
could not. I looked him in the eye and asked, “Do you know what IS
wrong with me?” He could not answer affirmatively. The good news was
the bad news and it was Lyme disease. He wanted to start a 21 day
IV. It began on a Monday. The first few days I left the shunt in my
arm, but soon grew tired of Saran wrapping my arm to shower. By the
seventh day I just had them take the needle in and out. We went
through diarrhea and improvement. I ate a lot of yogurt and the
diarrhea became so bad after one week they took me off off the IV
for two days. Then we started again. After 3 weeks, there was
improvement. There was never full recovery to the pre-Lyme me, but I
did gain more mobility. I was still in a lot of pain. My brain still
did not function properly. I still lost my job, my home, my car, my
sanity, my patience, my hope and my pride. I moved in with my birth
mom. A year later I went to truck driving school and have tried to
do that ever since. That year off was a blur of pain, alcohol and
depression. I have filed a disability claim and am currently in
appeal. I am too young and can do other things, that is what they
tell me. I cannot stand very long, cannot sit very long, get tired
easily, become confused easily. I can no longer multi- task. I have
zero patience in a customer service situation — obviously, I was
fired. Now I am living in and out of insurance, getting my
medications most of the time, begging once more for a diagnosis. The
worse part of it all is my sleep pattern has never recovered. I
NEVER sleep more than two hours at a time. I wake up. Sometimes I
stay awake and other times I go back in for another two hours. The
sleep is never restorative. A year and a half ago I began to have
problems breathing and developed pink lumps on my legs. This has
been tested for many options, but no definite decisions. COPD and
erythema nodosum is all “they” will commit to. Chronic fatigue,
insomnia, confusion, frustration and when I wake up I have visual
halos. The less I sleep, the larger the halos. I carry a bevy of
medications to cover any emergency. I am doing research on herbs and
supplements. I am seeking resolution and peace. I know there are
thousands of us, and I am one of many. It offers consolation, but
not help. It nearly destroys our hope. I often cannot even believe
this is what my life has become. I have not given up completely, but
I am doing everything I can to take care of myself. Ultimately we
are our only defense. We may not get a fancy diagnosis, but we can
experiment with things that bring relief in a stable way. I am not
condoning or suggesting the use of any of my remedies because I am a
work in progress. May we all find time to appreciate what we have
and try not to give too much power to what we have lost.
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Charlie Scheuring - My
name is Charlie, I am 6yrs old. My Mom and I have Lyme Disease and
Babesiosis. We have been diagnosed for a year now. I am doing much
better, I have had many problems. Being on the antibiotic protocol
has really helped my symptoms and pain. I am happy I am getting
better and I can go to school and play better now, I am not all
better, but I am getting there. You know my mom wrote this, but I
helped. I want to be counted! Not enough people or doctors believe I
could have gotten this in my state. I was very lucky to get a good
doctor to help me and a school that understand's why I feel the way
I do due to my disease. I wish more people knew that LD is real and
in Mo., I wish more doctors would believe and try harder to help
people. I wish people would not keep getting misdiagnosed with other
problems and meanwhile the LD get's much worse. I wish I could tell
the world that this is so important, and too many people do not take
it seriously. I also hope no other children or Moms and Dads have to
suffer like we did.
Thank you for hearing my feeling's. Love Charlie and his parents
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Amy Whittington - Hello, My name
is Amy. I was born and raised in Joplin, MO. For a couple of years I
suffered from weakness in my left leg that made me limp. Last fall,
the weakness became more profound and was accompanied by severe
fatigue and vertigo. After being treated with antibiotics for a
bladder infection, I developed numbness from the chest down,
including forearems and hands, mental confusion, cognitive problems,
bladder and bowel problems, heart arythmias, and a great deal of
difficulty in standing or walking more than 15 minutes. A
neurologist said she wanted to test me for MS, Lupus, and Lyme
disease. Even though they found Lyme antibodies in my blood, she
said she thought it was MS. I explained that I had a history of Lyme
rashes. So, she got a disgusted look on her face and shook her head
and then said she would order a lumber puncture, with strong
emphasis on the word puncture. "If they find Lyme antibodies in your
spinal fluid," she says, "I MIGHT give you 30 days worth of
antibiotics, just to make MYSELF feel better. But I want you to
start MS meds." She got 3 binders and literally "plopped" them down
on a table next to me and said, "Here, research this. These are MS
meds, find out which one you want to start the next time you come
in." I got online and found a LLMD. I researched all three
extensively and discovered that I had variations of Lyme rash since
I was 5 years old. I also discovered the controversy and the
unbelievable amount of ignorance surrounding the disease. The
horrifying ignorance comes from the very people who we trust to know
these things, Doctors. But what I have found are all kinds of
people, including doctors, who are so complacent that they are more
than willing to only accept knowledge that is spoon fed to them.
Good thing I don't suffer from that condition. Since then, all three
of my children have been diagnosed with Lyme/Master's. I don't know
about the rest of MO, but I would be willing to bet southwest MO is
endemic. Too many cases here of fibromyalgia, MS, and chronic
fatigue syndrome....aka misdiagnosed Lyme.
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