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ILLINOIS
K. Cuyler - Aug 19, 1985 living in Houston, Texas: auto accident
treated with long acting corticosteroids. May 1986 huge bull's-eye
rash, but no diagnosis, followed by surgery in July 1986 with IV
corticosteroids followed by 15 days in hospital w/no diagnosis,
discharged unable to sit-up, walk more than 1/2 block. Adrenal
failure, hypothyroid, immune system failure, severe chronic pain
24/7, forced to drop out of college (senior, dean's list, 3.5 gpa).
Forced to apply for SS disability at age 26 to qualify for food
stamps eventually approved nearly 4 years later. After years of
unrelenting pain & profound fatigue finally diagnosed with Lyme in
2006 after traveling to MO to see LLMD. Extreme problems finding
any medical care in IL, mostly homebound and in bed nearly
24/7. This doesn't even begin to touch on the abuse and mistreatment
by all sorts of educated professionals, not just MDs who seem to
think that if someone can stand up for even a few minutes that they
can then work full-time, or do anything else that some other person
thinks they should be able to do. I struggle to understand why/how
people can be some cruel and malicious towards others who are sick
through no fault of their own.
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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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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Nancy Mackay - Hi my name is
Nancy Mackay. I would like to tell you a story that started in 1987.
I am Midwest born and raised, I live just out side of Chicago in
Elgin IL. In 1987 I moved from Rock Island Il. w/2 small children to
the Chicago. I got sick in 1988 and have been every day since.
Twenty years of PROFOUND FATIGUE, RELENTLESS PAIN AND NEUROLOGICAL
PROBLEMS. I have seen enough doctors to last me a lifetime. Every
doctor told me I have something. LUPUS/5 yr’s, ATYPICAL MIXED
CONNECTIVE TISSUE DISEASE, FIBROMYALGIA, CHRONIC FATIGUE SYNDROME,
TMJ, ACID REFLUX, UPPER RESPIRATORY PROBLEMS, ALLERGIES, RAYNAUDS,
HEARING LOSS, VISION LOSS, ESSENTIAL TREMOR, EARLY PARKINSON’S, OR
RARE UNKNOWN NEUROLOGICAL MOVEMENT DISORDER. Then drugs, drugs and
more drugs none of which helped me, in oct 07 I went to my Dr. of 15
yrs and told him that I could not stop shaking, after several visits
he said quote “I have been watching you for the last ten minutes and
you are not shaking, call me when you have a fever”. I was shocked.
I went to my chiropractor and said please help me. She recommended
another doctor so, here I go again, more doctors, he sent me to at
least 5 more specialists and no one helped me. That’s when they told
me I have essential tremor, early Parkinson’s or rare unknown
Neurological movement disorder on top of everything else. I went
back to my chiropractor in Aug '08 and said, again help me please.
She said Nancy you have Lyme disease, I am sure of it. She sent me
w/test to my MD he refused to draw it and sent me back to my
chiropractor, so she drew it. Came back positive and that’s when the
INSANITY started. I can't find a LLMD in IL. I had to go to New York
for treatment and now I am going to North Carolina. AND THEY DON’T
ACCEPT INSURANCE CONSIGNMENT. The public needs to know, doctors need
to be educated. THIS HAS TO STOP. THE WORLD NEEDS TO KNOW PLEASE
TELL THEM THANK YOU.
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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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