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ILLINOIS
J Harris - I believe I was
infected in August 2002 in Northern Wisconsin at our summer home.
My symptoms started shortly thereafter, facial pain, headaches,
numbness in face hands and feet, joint pain, sleep problems,
fatigue, speech and vision problems and the list goes on. I saw 17
doctors in Illinois GP's, Rheumatologists, neurologists, allergists,
ENT's and even some who practice natural homeopathic and eastern
medicine, with no diagnosis. I asked for a Lyme test in 2004 and
was told it was negative later found out it was positive just not
CDC positive. Finally asked for a second test in Feb. 2005 and it
was CDC Positive through Quest (IgM). I am into 1 full year of
treatment and at about 75%-85% better I am grateful for my Doctor,
and my recovery and glad to be living a fairly normal life again.
Lastly I feel almost glad to have been infected, it was such an eye
opening experience, and now I can help others get diagnosed or find
the right doctor, guidance that I never had, and certainly is not
here in Illinois, for that I am thankful I may be able to help
others.
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Dottie L. Heffron - My story
begins with myself and my sons attending a simple birthday party for
my sons friend, who lived in the country in Southern Illinois. The
party was held under a huge tree. Approximately, two weeks after the
party, I was coming out of the bathroom with a towel on my head and
body. My son gasped "what the heck is that on your back mom?" My
life has never been the same since. The tick had lodged below my
left shoulder blade and was between a quarter/50cent piece in size.
Mortified, I looked in the mirror in disbelief. My son was freaking
out and said he could get it off. He took a cigarette and laid it on
the intruder for a minute, which seemed like an eternity. Still
clinging there, gross and big as all get out, I sat weeping. Then
all of a sudden I felt something hit my foot. Looking down, OMG
there it was, the culprit just smiling at me. It was so big you
couldn't see its legs anymore. I estimate it was there over 2 weeks
since the party. Wanting to torture it, I simply picked it up in a
tissue and a burial at sea was its destiny. Never thinking once to
have it looked at. I have always heard of Lyme disease, but just
dismissed the idea in a second. I worked 40 hours a week and
attended college full-time; I was so busy I never dreamed I would
get so sick. My bouts with Anxiety came about 2 weeks later
after the initial bite. Not having a partner to check my back, I
never knew if I had the bull's-eye rash or not. When the EMT came to
rescue me, with the first attack, he said, "don't worry, you’re not
going to die, you just are having an anxiety attack." I told them at
the hospital I had been bitten by a tick. They never tested me for
the antibodies, not one time. Over the next 4 years there were
endless trips to the same hospital. I saw 10 different doctors and
specialists. All testing came back I was ok. The last straw was: I
had a bad anxiety attack, off to the hospital I went. Low and
behold, there sat the same EMT that took me in the initial ambulance
ride, at the nurse's desk! He asked me why was I there. I told him
my symptoms, he glanced at the board and said, go in bed 4 so
nonchalant, and condescending. I heard the nurse say, why are you
sitting there to him, and who came in. He said he put someone in bed
4. There were 3 other beds with other people in them. I sat there
for about an hour. I saw the nurses helping the other people in the
beds. NOT ONE PERSON CAME to me and even asked how I was, let alone
take a vital. I was moaning and crying. I thought I was dying. Fed
up, I called my son and told him to come and get me NOW. When I left
that hospital, NOT ONE PERSON SAID anything to me, like hey lady
where are you going....nothing, nada. They just let me walk straight
out of there. I drove myself down to the next town's hospital. I had
blurry vision, sick stomach, shaking, tingling in my hands and feet,
one of my pupils were bigger then the other, and other numerous
symptoms. I was just so sick. They were all so nice to me, the sweet
little aid even asked me if I needed a glass of water. What a
difference this hospital was. They straight away got me a wheelchair
and whisked me off to a private room. The doctor came in, and I
noticed he walked with a limp and was paralyzed with one hand. I
believe he also had a glass eye. He was soft spoken and asked
me my symptoms and ordered a simple blood test. I dozed on and off
over the next several hours, and when the results came back, he said
I have the Lyme disease antibodies in my blood. He said to be sure I
will order a Lyme Panel and then prescribed doxy for 42 days. During
the first 3 to 4 days after taking the doxy, I was back to my old
self! WOW, I did have Lyme and now I am so much better! I waited 7
days for the lab results. Since he wasn't my primary care doctor, I
had trouble getting the results from him. I never get sick so I
didn't have a primary doctor. Finally, I got one of his nurses to
tell me the test came back negative. There I sat in disbelief.
I had all the symptoms, except the bells' palsy. I discontinued the
doxy. Something told me to seek other help, so the very next day
after i stopped the doxy, I went to a rural health care facility and
saw another doctor. She told me, the same thing has happened
to her husband, and why did I stop the doxy? She told me the testing
is bunk, and her and her husband had to pay out of pocket to have
another test done for him, and it was positive. I went back on the
doxy that day. July 11, 2007 was my last day of doxy. Here I was
thinking I am fine now and all is well in my little world. That is
far from the truth. On August 7th, I was at work when I had a major
Anxiety attack and back to the hospital where they found the
antibodies I went. I told them about my recent bout with Lyme and
they merely dismissed it and told me I had "heat exhaustion"! I have
had 5 or so attacks since. I can feel this movement in my head and
then the anxiety/panic hits me, and hits me hard. I had an
appointment with a Neurologist August 8th for a sleeping disorder I
have, so I decided to tell him about the Lyme antibodies in my blood
and he prescribed a 21-day supply of doxy for me. So back to
the rural primary doctor I went. This time I saw the gentleman that
practices with the doctor I usually saw. He said to me, let's fix
you from having the anxiety attacks in the first place. Here is some
"free" Lexapro. Take 10 milligrams per day, and I will see you in 3
weeks. I told him I was going to see a Neurologist the next day. As
I was leaving his office, I thought to myself....they are just going
to mask my attacks and that's not right. It just didn't settle right
with me. Upon seeing the Neurologist, the first words he said to me
was, "did your primary give you a HAPPY PILL?" I was just stunned, I
sat there like a deer in the headlights. Yes, was my reply. Then he
said, it would help the scratching in my head and he would like me
to take 20 milligrams the first week and then up it to 30 milligrams
the 2nd week, but Medicaid (Illinois state aid) would only cover 20
milligrams and he would see to it I would get the other 10
milligrams in samples from him. I also told him my primary ordered
another Lyme panel. He asked me, “Why did you have another Lyme
test, In 3rd World countries we don’t have any testing, we rely on
what the patient tells us.” I cried all the way back to my
office and then some. I am sorry but I would not give that Lexapro
to my dog, let alone take it myself! It would just mask my problems,
they think I am a sheep, and that is far, FAR from the truth. The
next day, I wasn't crying anymore.....I WAS MAD! I got on the
internet and found a vast supply of information and started making
phone calls and emails with others like me. That is how I came to
you today. I found such a sweet angel, named Sarah from a support
group based in St. Louis, MO. I am so very happy I have found
answers, and I can never repay her kindness. I am a strong woman who
had just been enlightened, and I will be HEARD! WE WILL BE HEARD!
Thank you so much for reading my story. May God Bless you and your
families.
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Brin King - My experience
thus far with Lyme Disease is long and challenging. I contracted
Lyme Disease while employed as a Forest Ranger in Northern Illinois
in July 1990 and have endured much, mentally, physically,
neurologically and in every aspect of my being as well as
materialistically, financially, family, friends, relatives affected
by my contracting Lyme Disease. The journey is long and much of it
has been painful and filled with so much medical treatment. I have
endured seizures at the beginning, were 17 - 40 seizures per week,
giving me neurological damage and epilepsy, as well as enduring
meningitis twice. Progressive encephilitis for a duration of 4-5
months. 38 days in a coma, a heart attack due to lack of oxygen to
the lower part of the heart in which was diagnosed due to Lyme
Disease, two months after contracting Lyme Disease, a stroke in May
1994 in which I was paralyzed on the left side of my body, yet due
to 28 months of physical and occupational therapy, I have regained
95% of my left side of my body. I have endured cancer, and 43
radiation treatments for prostate, kidney, colon. Have had my gall
bladder removed. I have had brain surgery to remove brain tumors
behind my right eye. Presently after finishing up my radiation
treatments, I still endure arthritis in my joints, mainly knee,
elbow, fingers, wrists and ribs and spine. I still have seizures
periodically, and have good days and yucky days, but I am here today
to say, Lyme Disease is hell and for some it can be endured, but for
many-not! 11 spinals, 16 MRIs, numerous blood tests, x-rays, eeg's,
surgeries, etc. all have come to be a part of Lyme Disease for me. I
have had my last rights given to me on three occasions, the latest
on May 11, 2007, 11:14 a.m., my life expired due to allergic
reaction to medication given during surgery for cancer, due to
complications created by Lyme Disease. To go into depth and detail
on my experience with Lyme Disease is long and tests what memory I
do have, for I no longer have the luxury of recalling childhood
memories or many people that at one time were in my life and
memories, but what I do recall, what I do recall is a battle that
continues on to this day, 17 years later and yes, there is chronic
Lyme Disease and antibiotics, natural herbs and otc, have all been
tried repeatedly as well as a picc line of 6-1/2 months to 484
I.V.'s of Rocephin antibiotics. As many have endured, Lyme Disease
puts you on trial, it is not a question of guilty or innocent, it is
a question of want and will to survive! -- Brin King Lyme Disease
victim / survivor
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Alisha Prunty - I contracted lyme
at age 9 or so while living in Maryland. I may have had subsequent
bites but it was the only to leave a bulls eye rash. I didn't have
symptoms until I was about 17. Since then it has only gotten worse.
I thought until recently that everyone feels constant pain all the
time and deals with the sweats and tingling, numbness or shooting. I
got so used to the pain, it was my norm, so I figured it was
everyone's. I was seeing a chiropractor thinking most of my symptoms
were caused by a knee injury and flat feet which lead to maladaptive
compensations throwing my whole spine out. My chiropractor however
thought my symptoms were unusual for someone of my age and suspected
fibromyalgia. One of my professors also suspected this diagnosis.
Doctors told me the pain, and fibromyalgia, are all in the head.
Because f this I've been afraid to seek treatment for Lyme disease
which I feel more closely matches my symptoms. The Lyme Disease
Association (LDA) provides 38 symptoms of the disease, I have 32. I
still fear the doctor's snide remarks, doubt, and reliance on
procedures which often provide a false negative. The pain is so bad
that I consider suicide often. I'm lucky to have a powerful support
system which keeps me from this option. When I researched to find a
possible cause of my symptoms I got goose bumps reading about Lyme
Disease when I read about the bulls eye rash. My rash from my past
and the information that the disease can remain latent for decades,
and my 32/38 symptom match assures me to seek testing. Still I am
afraid. I have been searching for hours to find lyme disease
specialists or infectious disease specialists who are extremely
knowledgeable in Lyme disease. One lyme source provides one source
to find doctors though I signed up and never received the necessary
email from them to access the data base. I haven't been able to find
any other sources.
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Jennifer Scott - I can make my
story VERY brief - it's just like everybody elses. Period. Lots of
doctors, lots of wrong diagnosis, lots of feeling like I'm some
psychotic hypochondriac, lots of late nights on the internet with my
husband, diagnosed myself when I read other peoples stories - told
doctor what I had - multiple negative lyme tests. Finally talked to
a lyme literate doctor who was a co-workers dad who said I did have
it and advised me where to send my blood for testing. Finally a
positive result. No lyme doctors in Chicago. Finally found a lyme
"friendly" doctor who was willing to try - and I give him kudos for
working outside the CDC box - but after a year of treatment, several
hospital stays and one unnecessary gallbladder surgery I had had
enough. Through referral of another lymie living in my area found a
lyme doc in Kansas who has researched and treated nothing but lyme
and chronic illness for 25 years. Took a leap of faith with trust in
my Lord and here I am. Treatment started September 11th and
unfortunately I'm thinking I feel worse than ever. I'm on my third
round of a different IV antibiotic - and I have not stopped herxing
since I got here. Only a few days where I felt okay. She definitely
knows what she's doing. She has done so many tests on me and found
so many things that no other doctors ever mentioned. She gives me
copies of everything, explains everything, and how everything fits
together. I'm on a very strict diet, on tons of supplements, plus
IV's several hours a day. But these spirochetes must be hiding in
every nook and cranny of my body because it's been one gigantic herx
since I got here. I wobble between...I'm getting them all and I'm
going to be all better sooon, to....this is pointless and I'm only
going to die anyway. It's sad really....the not knowing. The change
in attitude about it. I've been away from my family for treatment
for almost 3 months now (which was how long it was supposed to be)
but I already know I will be staying longer....just praying for a
happy ending.
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Joan Sullivan - 53 yr. old Mom.
2001 excellent health, then came down with excrutiating pains &
fatigue. 24 Drs. 2 yrs later saw LYME LITERATE Dr. slow
recovery. Physician husband divorcing me. Unsure of my health
insurance. Very scary.
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Ken Talaga - July 4th weekend,
2005 went up to Wisconsin kayaking the Wisc. & Miss rivers... had a
great time but little did I know that I brought back a serious
disease. A week or two later I was at work on a hot 90 degree day
when I was hit with my first symptoms of what I thought was heat
exhaustion. I developed a pounding head/neck ache that would not go
away no matter what I did. As the week progressed the head/neck ache
persisted and I felt fatigued. Friday night I spent fighting the
head/neck ache that had moved into my entire back or spine and just
wanting to sleep. The pain was so intense that it was difficult to
just lay comfortably enough and long enough to sleep. I lost my
appetite for three days but drank water to keep myself hydrated. I
had no bulls eye rash yet. I have no health insurance so a friend of
mine, who thought that I may have Lyme disease, began looking for a
clinic or a primary care doctor for me. The first doctor I saw would
not do the blood test for Lyme even though I requested it. This
doctor felt that I just had a case of a flu bug and that I should go
home and take some Tylenol and get plenty of rest...... hhmmm. A
couple more days go by and I visit another doctor pleading my case
and this doctor basically told me the same thing the first doctor
did and did not want to give me the Lyme test either. A few more
days go by and I began having some trouble breathing and developed
rash marks on my shoulders, chest, and thighs. Went to the doctor
again and she still felt that I did not have Lyme and that it was a
respiratory problem. She gave me a vaporizing treatment that lasted
for an hour. Then I sat in the exam room waiting for what was to
happen next for two and a half hours. Finally she comes back and
wants to rush me off to ER to have a spinal tap done because she
"thinks" I have Lyme...... I refused her suggested treatment and
went home tired and disgusted with the local physicians. A few days
later my friend convinced me to go to one more doctor. This doc.
listened to my list of symptoms took a look at my various rashes
that were now all over my chest, back, arms, and thighs. She did the
blot test and gave me a prescription for antibiotics that I took for
about a month. Now I just read an article claiming that this
treatment is not enough to rid of the disease. Occasionally I suffer
from joint pain so much so that I can't write or draw for too long
and it affects my ability at work. Where to go from here?.....
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