|
WISCONSIN
Marina Andrews - A tiny tick bite on my ear in 2001was so
painful I couldn't let the doctor touch the ear lobe, even my long
hair brushing the lobe was torture. Worried about Lyme Disease I
demanded antibiotics and was given 10 days of Doxycycline. Two
months later the ear felt full, like I hadn't gotten the water out
after swimming. Then the ringing started. I'd heard of "ringing in
the ears" but had no idea how much torture this could produce, how
much sleep a person could lose, how distracting and distressing
constant unwanted noise could be. I began to see Ear Nose and Throat
doctors. "Could this be from Lyme Disease?" I would ask. "NO!" was
the emphatic answer at Mayo, at the U of M, at every ENT doctor's
office. They could find nothing wrong. Offered no treatment, no help
even though I regularly walked into walls. My exceptionally good
balance was gone. Entering a dark room would make me fall over. The
tinnitus eventually led to hearing loss in the affected ear. The
hearing loss makes my work as a substitute teacher difficult though
being able to work at all is something many Lyme victims are
incapable of doing. Lyme Disease causes ear problems in 15% of
victims. Some people will suffer with only one symptom of Lyme
Disease for many years until an arbitrary point of body breakdown, a
threshold is reached. The body then capitulates, more symptoms
occur. Re-infection or other body trauma at any point in a person
already infected with untreated Lyme Disease can have devastating
consequences. This is what happened to me. Then I knew my suspicions
were correct. I'd had Lyme Disease all along.
* * * * * * * *
Diane Biel - Life has many twists
and turns and at every stop it just didn't feel right. I was told
this and that - but I was still sick and only getting worse. My
three girls are always getting sick - picking up anything and
everything that goes around at school - but for them it takes three
times as long to get better. Life came to a point that it just
stopped - we stopped going anywhere - it was just school and home -
and even then the girls and I were still sick and so tired all the
time. Then I took a stop that all made sense - every symptom and
every pain was listed and finally no more going to doctors that have
no right calling themselves a doctor - no more medication that were
not working. My stop has just started for me and for my three girls
- I have a lot to learn yet and sometimes its all just too much to
handle - we have a starting place in life and for that I am truly
grateful - one day I hope to take my kids to the library again or to
the YMCA without the fear that it will make us sick for a week. It's
a long path ahead but it's a path that we are willing to make no
matter what happens along the way - My prayers are with you all -
don't ever give up!
* * * * * * * *
Dawn Birling -
I have lived for 15 years in central
Wisconsin, which is literally infested with ticks. After obtaining
and reviewing my medical records for the last 15 years including all
lab work and all test results that were performed, right down to my
dental records, Lyme disease was suspected already as far back as
1991. I had 3 rashes under my breast and the Doctor looked at it and
said I had ringworm. I have
spent years going to Doctor after Doctor with the same symptoms.
Some of the problems, just to name a few were, headaches, sinus
problems (balance or equilibrium disturbance), carpal tunnel, aching
joints, heart palpitations, arrhythmia, edema, heart burn, vision
problems, light sensitivity, sound sensitivity, muscle spasms,
numbness, cold intolerance, sleeping problems, I would awaken at
night with cramping, sometimes up to 10 times a night. My arms and
hands would go numb to the point that I would have to pick up one
hand with the other and it felt lifeless, as though I was touching
something that was dead; and many more. I had all the testing done
on everything imaginable all of which came back normal. I had
33 of the 35 symptoms of
late-stage Lyme disease.
October 29th, 2004
while already on treatment for Lyme, I was re-infected, not once but
twice. I now have a
service dog. It’s simply impossible to be reliant on others. It is
my goal in life to do everything and anything I can to help others.
* * * * * * * *
Randy Birling - My wife Dawn has
posted her story regarding chronic Lyme. I myself was just diagnosed
and tested positive on a Lyme Serology. I have had loss of vision,
aching and multiple rashes popping out all over. I seen a local
doctor and was told, and I quote, " it looks like ringworm, but
ringworm usually doesn't look like that", End quote. Unusual remark
coming from a medical professional. They asked me if I had ever had
a Lyme test. I said no, but they did not take one, just said we will
watch it. My wife took me and had a test run by another doctor and
it was positive. I am fortunate that I was diagnosed and it is in an
acute and not chronic state. Hopefully I will be cured by oral
antibiotics and not have to endure what my wife has and is going
through. One controversial question I have is, can Lyme be sexually
transmitted from partner to partner? Could I have gotten this from
her? Hard to say but like my wife, I am an outdoor person and pull
many ticks off myself during the year. I agree, Doctors need to be
educated. I hold a degree in animal science, I know what ringworm
looks like. Ironically, our daughter had a tiny tick on June 13,
2005 and this winter developed the same rash. Went to the same
Doctor and was told the same thing, ringworm. Hmmm, do we have an
epidemic of ringworm here?
* * * * * * * *
Tamara Kibler - I was finally
diagnosed with Lyme Disease in Sept. 2005, it seems I have had Lyme
since 1998 and was wrongly diagnosed with various illnesses as well
as the "Psycosymatic" disagnosis. My Lyme doctor is now under
attack by a lawyer of a drug seeking patient and now the medical
board. I was so ill when my doctor diagnosed me that I would
probably have been dead within 2 weeks had treatment not been
started.. What made my case more difficult was because of an over
abundant amount of steriod injections by a good meaning
anesthesiologist I had no immune system left, had developed pnemonia
and then Babesiosis. After about a year of treatment I developed
pernicious anemia which nearly killed me and the doctors in the
hospital said I should only been treated with a single course of
Zithromax and that would have been all that was needed to cure me of
the Lyme and Babesiosis. I am so greatful for my Lyme doctor for
not feeling the same way and it was his treatment that saved my
life. I continue to have linguring symptoms but the thought of
losing my doctor because of this legal matter would be a terrible
injustice to a wonderful man. A doctor in private practice who will
not turn down any patient regardless of ability to pay, is now going
to be driven out of practice because of a money hungry lawyer.
* * * * * * * *
Stacey Kremel - I have been
living with undiagnosed Lyme Disease for 6 years. I most likely
contracted the disease while on a camping trip in August of 2002. My
fiance, friends and I were celebrating our upcoming wedding. On
September 30th, 2002, one month after we were married, I got
horribly sick. Severe fatigue, headaches, neck aches, migrating
pain. I saw a doctor immediately, I thought maybe I had mono. He
asked if I had traveled anywhere. I didn't think much of it, but I
told him we'd been camping about 6 weeks ago. The very first thing
he tested me for was Lyme Disease. I was worried. I had heard that
Lyme Disease could cause arthritis. I waited a week for the results.
Finally, the doctors office called, my Lyme test was negative. If
only I knew then, what I know now, my life would be completely
different. I didn't know you could still have Lyme when the test was
negative. If I had this information back then, I would have demanded
antibiotics immediately. Instead, I saw over 15 doctors in the
course of 6 years, each of them not knowing what was wrong. They
preformed test after test, everything was "normal". Many of them
told me I had fibromyalgia. They said I just have to exercise and
eat right, then I will get better. I tried that and it didn't work.
In fact, I was getting worse. I continued to see doctors and they
continued to tell me nothing was wrong. I was beginning to think I
might be crazy! During this time, I watched a lot of "Mystery
Diagnosis", a program on the Discovery Health channel. I came to
see, many people had serious illnesses which their doctors ignored.
One of them was Lyme Disease. It made me start searching again. I
found a Lyme Literate doctor who did another Lyme test. On August
8th, 2008, I got the news, I tested positive for Lyme Disease!
Finally, I knew what was wrong and I could start treating it
properly. At this time, I am on my second month of antibiotics. I am
slowly starting to improve. My husband and I are still married. He
is, and will always be, my biggest supporter. He's seen me through
the good times and the bad, in sickness and in health. He is my
rock.
* * * * * * * *
PJ Langhoff -
My daughter, son and myself contracted Lyme disease
back in 1992 in the city of Elkhorn, WI while playing in our
backyard. Little did we know it would be 12 long years before any
doctor in our state would even acknowledge that we could possibly
have Lyme. Despite the bulls-eye rashes, and all the associated
symptoms of Lyme disease, doctors ignored our plight. Now we have
long-term damage. I have neurological Lyme disease. Both children
are depressed and affected by the Lyme psychologically. My daughter
even was hospitalized for mental illness caused by Lyme disease.
Long years of antibiotics have done little to help. IV antibiotics
are helping, but are no longer feasible. My immune system is so
damaged that I can no longer eat food normally like everybody else. None of this should have happened. No one should have to live
like this! We are still struggling to get treatment after 14 years
while Doctors in our state claim Lyme disease is "not in our area",
that chronic Lyme "doesn't exist" or that they won't treat longer
than 30 days because of the medical boards and insurance problems.
This is unacceptable!
* * * * * * * *
Yvette Lobajeski -
There is a trend in Lyme carrying ticks in regions of SW WI to pass
on the disease without the bull's eye rash. My father purchased some
land to tend as a hobby in his retirement and my family of 5 find
ourselves camping, hiking and hunting there frequently. Both my
father and I were diagnosed with Lyme after having the same symptoms
develop. We were treated with a month of antibiotics. This will be
the 3rd known time for me to be infected, and each time the symptoms
build up. I first contracted the disease in '94 from a camping trip
in Black River Falls, WI. It was one of the first areas in WI that
the CDC became aware of as being high-risk. It wasn’t until the
second bite that more pronounced symptoms appeared and the Dr. made
the connection. I was given a 30-day treatment and the more
pronounced symptoms eased up. The 3rd time for me and the 1st known
for my father was in 2004. I have recently gone to a neurosurgeon
who wants to do a spinal tap to look for spirochetes. He believes
that they reside in the brain tissue and breed. This poses the
problem of making them almost impossible to kill and very difficult
to detect. On that visit in 2004 to my primary care doctor, I told
him my father had a positive diagnosis of Lyme. My mother prompted
me to get tested too. She recognized our symptom similarities. Since
my first diagnosis we have learned a lot about the disease and she
continually asks my opinion of the issues that affected my brain. Is
it old age or tick bites she asks every once in awhile and a health
conversation ensues. In 2004 my knees that gave it away. After
telling the doctor how, according to my mother, I had the same
symptoms as my father; he wrote in neat large print on my medical
record that...* Patient is likely seeking attention ...* Patient is
dealing with a lot of stress....In contrast to his usual messy
writing it sticks out like a sore thumb in my records. He wrote this
on his final day of work, before any tests were done. My test was
positive, just like my fathers test had been. Yet, every doctor I
have seen since refers to that note that is written in my chart and
base their conversations on that reference. I have always believed
myself to be able to manage stress. But I am not as good dealing
with arthritic symptoms in my early 30's, heart and breathing
problems, and difficulties with speaking and remembering. I find the
aphasia the most troubling of all of my symptoms. It makes it
difficult to teach when you "forget" common words. Short-term
memory? I've already forgotten what that is. I can't recall being
pregnant with my daughter or the first 3 years of her life. I look
at pictures that I took and vaguely remember. One doctor told me it
might be an early onset of Alzheimer's.
* * * * * * * *
MaryAnn Maeder - After 20 years
of being sick, I was finally diagnosed with Lyme Disease in 2004. I
showed the typical symptoms of Lyme, even requested of doctors to do
a Lyme test; they stated no way did I have Lyme. I was finally lucky
enough to find a physician, who I had worked with at one time, who
told me he would find out what was wrong. He kept his promise by
diagnosing Lyme after 20 years of being sick, and made to feel I was
crazy by some of the past physicians who saw me---shame on them!
Because of THEM and their inadequacies, I will probably never regain
my life back. My condition is too far gone; I have lost most of my
vision, I suffer from vertigo, tremors, difficulty in walking,
extreme fatigue, memory loss, difficulty in expressing my words,
pain throughout my body especially my limbs. At times I have
difficulty breathing and swallowing. There are many more lasting
effects that this disease has fated me. I was released from my job
(a medical clinic) three years ago because I was sick; did I say a
medical clinic--very sad. My health insurance "allowed" me two
rounds of IV antibiotic treatment two+ years ago. I improved
somewhat at that time but soon after declined and continue to do so.
My health insurance states that I should be better after those
treatments and that it probably wasn't Lyme. How patheticaly
ignorant. Because of lack of income and health insurance payments, I
no longer can afford any type of treatment. When is this country
finally going to make a stand and recognize this terrible disease
for what it is and how many people it effects? When is our
government going to take away the "god-like" power that our health
insurance companies have? All of us who suffer from this disease
need to state our opinions, make a stand and talk until someone who
can make a difference listens. We need to do this not just for
ourselves but for all the others that will follow us; if we can make
it easier for them, we have done something positive.
* * * * * * * *
Victoria Mattson - I train horses
for eventing for a living and spend a lot of time in wooded areas.
After working horses one day in Aug of 2005 I noticed I had a bulls
eye shaped rash under my arm. I decided to just put antibiotic
ointment on it and assumed it would go away. A week or so later I
went to the ER one night due to high fever. I asked the DR if the
rash had anything to do with it, and he said NO. I showed my father
a few days later and he said get to the doctor that is a classic
sign of Lyme. Went to the regular doctor he put me on Doxy. I did
not handle it well. I spent all day vomiting, in pain, and not being
able to get out of bed. After a month on the doxy, which I called
the doctor and kept complaining about what was happening, I went
back in and they said I was cured. Another month later they put me
back on the Doxy and it almost killed me. My body acted like they
were over dosing me. At that point I did not want to see doctors
anymore. By spring of 2006 I could not ride either my horses or my
clients horses. My balance was horrible, and I had started blacking
out at times, I also started not being able to speak correctly.
July of 2006 I finally found a doctor that specialized in Lyme, and
he was not that far from me! He did some other Lyme tests, listened
to my symptoms, and told me I had advanced Lyme. He put me on some
all natural drugs to get my body to the point that it could even
handle the antibiotics he was going to put me on, as he was afraid
that the antibiotics would kill me. I spent three months on Bioxin,
Omnicef, and Tindemax. Was doing great until fall of 07. I ignored
the signs until spring of 08 and by that time I was sick every few
weeks and my balance was failing. I started back up on all three
drugs and now am on just Bioxin and Samento TOA FREE drops. My
doctor has helped a ton, and I hope to get back to what I use to do.
I have not been able to compete or work for almost three years.
Lyme\ took me from being one of the top trainers and riders in area
IV to hoping to just compete my own horses again.
* * * * * * * *
Shari Olson - My name is Shari
Olson. I live in Weyauwega, central Wisconsin. Both my Mother and my
Father have posted their story to this site. (Dawn and Randy Birling)
I am due to have a baby this month (Aug. 06), and last week I was
just diagnosed positive as my Mother arranged for me to be tested,
(she has been suffering with this for many years). I went to my
local Dr. when the horrible rash appeared and he sent me to a
dermatologist and I was given a cream to apply. My Mother
photographed the rash, saved the tick and took me to have a Lyme
test taken. Thank God. I hope that I can get proper treatment after
the baby is born. It's ironic that my Dr. is the same Dr. that saw
my Mother in 1991 when she had 3 rashes, and my Father when he
developed the rash and they were both told they had ringworm and
dismissed. It was horrible and it also left my leg scarred. It seems
my whole family is afflicted with this disease. My Mother arranged
for him to have a test which came back positive. I am not literate
on this disease, all I know is that I am so sick. I can sleep around
the clock and feel like have the flu. Constant headaches. My husband
has to come home from work and take care of the house and the other
children. If it hadn't been for my Mother, I would not have gotten
the test.
* * * * * * * *
Kendra Sanderson - I had a
succesful landscape business and was bidding a job in Sommerset WI.
That evening I found 25 ticks on me tried to remove them alot of the
heads stuck in me. I went to urgent care the following day the doc
said I would be ok, they would assimilate in my body and there was
no lyme in that area. Ten days later on June 15, 2002 I became sick
like the flu. Drs...Drs...Drs. "you're depressed take these pills"
and so the story goes. Some days I can most days I can't.
* * * * * * * *
Lisa Schultz - Hello, My name is
Lisa. I live in Lake Geneva Wisconsin. Id been sick with a fever for
a couple months and diarrhea. Thats what started me going to the Dr.
I also had been noticing that I was having a hard time with memory
and that my arms and legs were getting tingly and numb. but it would
come and go. After months of tests my Dr finally called me and told
me I tested positive for Lyme. She put me on Doxy 100mg twice a day.
It hasnt done anything to improve my condition yet. I developed a
tremor. I would go through these twitching bouts every couple days.
I left several messages at my Dr's officed before a nurse finally
called me back and told me it might be because of Lyme. She
instructed me to take some Benadryl. I didnt. I found a new Dr and
started reading up on this disease. Now i have seasalt and vit c,
and lots of vitamins but nothing is really working yet. I had a good
day yesterday but today has been hard. I'm having a hard time
typing. I have ringing in my ear, and it feels like someone beat the
bottom of my feet with a bat. WE had a family get together and I
slept the whole time. My new Dr sent me to a neurologist, who talked
to me for a minute then said I don't have Lyme. He called my other
two Drs and said I am just manifesting symptoms because I read about
Lyme. (Which I knew nothing about until I was diagnosed over a month
ago.) He ordered an MRI and did blood tests for Lupus and Syphillis,
and referred me to a neurologist tomorrow. Thinking back I think I
picked this up over ten years ago. I've had a stiff neck, panic
attacks, strange rashes, (but not bulls eyes, more like hives) and
numb hands for years. I'm now afraid to even call my Dr since the
neurologist called them and said I don't have Lyme, but I only have
two days left of antibiotics. I'm very scared. Lisa
* * * * * * * *
Linda Vander Heien - I was diagnosed with lyme in Oct. of 2006.
My husband came down with it first. We suspected at first, then we
thought we should rule out lyme. Well he had it did treatment and is
better. I thought I better get checked and had it. I am still in
treatment, went through 2 treatments of antibiotics. But the
interesting part of the story is I have 3 sisters with M.S. and
their symptoms are very much like lyme. One sister is being tested
for it and others think I am crazy. My lyme doctor told me that m.s.
is misdiagnosed alot of the time. My sister that is being tested
said there is hope I do not have to live like this. I do think my
whole family has it. We are very outdoorsy people. It is hard to get
doctors to test the lyme. How do we get them educated.
* * * * * * * *
Kathryn Van Handel - 2 years old,
Lyme disease, contracted by mosquitoes. Pictures of mosquito bites
on forehead, pictures of the bull's-eyes on the forehead, one week
later.
* * * * * * * *
Dana Weinberger -
My story begins with the development of Fibromyalgia at age 22.
Because my mother had it as well, I was not surprised that I also
got it. However, it did not stop there. I also started to develop
other illnesses in the past 17 years. I have been diagnosed with FM,
Depression, Osteoarthritis, Hypothyroidism, severe Interstitial
Cystitis, severe dry skin, hair loss and a host of other mysterious
symptoms; (memory issues, brain fog). My youngest son contracted Lyme
Disease last year and through my research on Lyme Disease and his
treatment, I realized that I probably have Chronic Lyme Disease
(and was probably bit as a child). I had to go out of state to get 3
months of treatment for my son's Lyme because in this epidemic area
they only treat with a 21 day course of antibiotics. He has had some
return of symptoms so decided to treat my whole family with a
natural treatment until we can afford good Lyme Testing. I am in the
process of setting up my first appt. with a Lyme Literate Dr. After
starting a natural treatment for Lyme Disease, I had a "herx"
reaction immediately. And, a week later developed a EM Migrans Rash
on my leg. My Dr. of course poo-pooed it and said it could also be
"ringworm" (it was the middle of winter of course). I also had
other rashes on my body that have never been diagnosed. My ELISA
test came back negative which did not surprise me since I knew that
the test is not that sensitive. I have been disabled and housebound
for 3 years now and am now going through the process of Disability
Benefits. It has already been a year of denials and am waiting to
get my day in court. This illness is insidious and life-destroying.
My whole family is probably infected and it has even effected my
marriage. Financially we are bad off and I do not see an end in
sight. The worst part I believe is not having enough Lyme Literate
Dr.'s to help us. There is also a huge cover-up because drug
companies do not want to pay for long-term antibiotic treatment. I
try not to get "caught up" in the Lyme controversy but, it is
difficult not to. I only hope that I can help others who are
suffering. I believe I can now spot Lyme disease and will do my best
to recommend diagnostic testing through a good lab like Bowen or
IGenix. I also believe that Dr.'s, especially in epidemic areas like
mine, need to be educated about Lyme Disease. I am in the process of
putting together materials to send to my Dr. because it may open her
mind to this awful disease. All I can do is try. I am happy to have
found this site and look forward to directing many more Lyme
sufferers here to tell their story. Thank you!
* * * * * * * * |
