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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.
* * * * * * * *
Sheila Bodey
- My story begins in late May of 1999 when I began experiencing low
grade fevers and general aces and pains. I also noticed a ring like
rash behind my right knee. Not being familiar with Lyme disease and
still feeling ill after 2 weeks I went to my Dr. who said I had the
flu and looked at my leg and said I had ringworm! So I left with a
prescription for antifungal cream and wa told to come back if things
didn't get better. Well the leg never did itch ( which I told the
doc) and finally after another 3 weeks the ring went away. For the
next year I was plagued with many symptoms - aches, pains, fevers,
headaches, memory lapses, fatigue. Nothing real serious but just
enough to other me and make me miss work more than usual ( I was a
full time Respiratory Therapist at the time). The next spring my
husband & I bought the local ice cream parlor which meant I was now
working 90 hours per week. The added stress caused the hiding menace
within me to come out full force. I noticed my toes started dropping
on my left oot, my back went into spasms without warning, I suddenly
began to suffer migraine headaches ( I had never had these before),
I had numbness and tingling in my right fingers and hand that spread
into my arm.
The nightmare continued on...22 doctors and 2-1/2 years later I had
been diagnosed with the following illnesses: Probable MS: anxiety
disorder, depression, polyneuropathy, gastroparesis, Lyme disease.
The Lyme disease diagnosis came after I traveled 9 hours from home
to see a Lyme literate Doctor. He did a Western Blot test which came
back positive. The other Dr. had only done Elisa titers for Lyme
because the CDC says that if the ELISA titer is Neg. then the
patient doesn't have Lyme. But I am proof positive that is not true.
My Elisa titers were Neg. but the Western Blot was positive. As a
result of not being treated for 2 1/2 years I have suffered the
following PERMANENT damage to my body (and my life). Bilateral
polyneuropathy (I wear bilateral AFO's and walk with forearm
crutches), chronic pain syndrome (I have an inplanted intrathecal
pain pump), Urinary incontinance,paralyzed right hemidiaphragm,
gastroparesis (paralyzed stomach),chronic migraine headaches,
frequent muscle spasms, tremors, depression. I am unable to work and
really miss being able to earn a living as well as provide care to
patients. I really feel like I was let down by the Medical community
as a whole , especially the CDC who set standards for physicians to
follow, standards that in the case of Lyme disease are very
inaccurate and in turn hurtful to the very people they are paid to
protect-all of us.
* * * * * * * *
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!
* * * * * * * *
Sophia Biel
- I am 10 years old - when I was born my mom passed on lyme disease
to me. I have been sick on and off my whole life and I suffer with
fatigue, pain, and get ill very often. I started treatment to lyme
disease about six months ago and am starting to feel better and be
able to do things "normal" kids do. I pray no other kid will ever
have to live like this - I pray doctors will help more people and
they will help us who are sick with this disease.
* * * * * * * *
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?
* * * * * * * *
Tom Easton - My family vacations for several weeks a year in a
wooded area of Washburn County in Northwest Wisconsin, and has since
1926. I have been going there my whole life, from 1959 until now. In
Summer of 2002 I became very ill after a family vacation to
Northwest Wisconsin. I suspected Lyme, as my brother and father had
both become ill after the vacation. Both were diagnosed with Lyme by
separate doctors, and my father also had Ehrlichiosis. They were
given Doxycycline and are fine now. My Lyme antibody test was
equivocal. After several days of intense suffering, I convinced the
doctor that he needed to do something, so I got 2 weeks of
Doxycycline. I immediately felt much better, but I never regained
full health. Years went by and I gradually felt worse and worse.
Since then I have had several positive Lyme antibody tests, and my
Western Blot tests have been interpreted for me as having an older
and a newer Lyme infection. The doctors that I saw told me that if
indeed I ever had Lyme, I was adequately treated and any lingering
symptoms were "post Lyme syndrome". I eventually found an LLMD 3
years ago. He ran a co infection panel and I tested positive for two
strains of Bartonella. I also have very low thyroid and
testosterone. I am three years along in treatment and functioning
fairly well. I have been on various antibiotic combination's, Lyme
inflammation diets, supplements, herbs, and any other Lyme
treatment that I come across in my research of this disease. I am
still trying to somehow get back to full health.
* * * * * * * *
Michele Feltz
-
I started
chasing symptoms 25 years ago, fatigue, joint & muscle pain, back &
neck pain, headaches, chest pain, shortness of breath, numbness &
tingling of hands and arms, on and on. Diagnosis over the years
were, overuse of joints from being athletic, carpal tunnel, stress,
depression, mitral valve prolapse, pleurisy, lupus, chronic fatigue,
fibromyalgia, MS, etc. Many related surgeries. I now have
neurologic symptoms and memory loss. I have had 4 negative Elisa
tests since the early 90's. Even though I was recently diagnosed
with Lyme with a CD57 of 32 and positive Western Blot (1 band), I
have had severe fatigue off and on since childhood with other
symptoms and have had chest pains, etc. since I was 19. I am now
48! I have passed this onto my oldest daughter, now 20, who also
has many of the same symptoms. Three years ago, I woke up dizzy and
was admitted into the hospital for 5 days, only to be released
because all my tests came back normal. I saw an otolaryngologist
and went through 3 days worth of tests for vertigo. Again, the test
did not show anything. I was told that it was all in my head! I
remained dizzy for 10 months, using a walker for balance, lost my
job, could not drive. Continuing to go down hill year after year,
until near collapse last year, I finally found a natural doctor that
gave me a real diagnosis. My years of complaints were finally
validated, along with my daughters issues. I'm so very scared that
it may be too late to reverse any damage that has been done to us
thus far. I fear the most for my young, beautiful daughter whose
life has been so difficult for far too long. My youngest daughter
shows some signs, but at present are manageable. How could this
have gone misdiagnosed for so long? All of our suffering should not
have been taken so lightly by the many doctors we've seen and
presumed most of our issues to be all in our heads. How very sad to
have lost so many years to a chronic disease that we had no idea
that we even had. Now we must endure another long journey.
* * * * * * * *
Stacy F. - my
problems started after a canoe trip; about a month later I got a
stiff neck and tremor in my hands; sore throat; fever numbness and
tingling; shaking; dizziness; motion sickness; eye floaters; heat
sensation in my foot; aching joints like I've never felt before. I
went to the doctor and my first Lyme test came back neg; after
several months of these strange symptoms that would come and go.
Sometimes multiple symptoms at once sometimes only one or two
symptoms at once. I went back to the doctor and said I'll not going
crazy there's something wrong with me. They did more tests and by
this time I was researching my symptoms on-line and I asked the
doctor if she could test me again for Lyme; the ELISA test came back
equivocal; so I knew I had it; I don't think there a whole lot out
there that will make a Lyme test come back that way. I'm being
treated for two weeks on DOXY 100 mg twice per day and I'm feeling a
little better; I think; I hope I can get rid of this otherwise I
heard about an acupuncturist in Madison that is supposed to work on
Lyme as well.
* * * * * * * *
Denise Ingeman
- I decided to start hiking out at Bong Base recreational area is SE
Wisconsin. Wanted to get into shape and do a 3k cross county run out
there. So I was out there nearly every day. I found many ticks on me
but none attached, until the end of June 09. I must have missed one,
pulled it off of me on a Thursday.. was at the docs office by
tuesday with an EM on my leg. The Nurse practitioner had never seen
Lyme before and had printed the entire CDC manual , and asked me to
pick the tick from the pictures that looked like the one I pulled
off. I said are you kidding me what is this a line up? I have the
bull's-eye rash that really is all we need to know.. lets get the
drugs started..I am an RN and did some research so already knew what
I had and what to do.
So 21 days of Doxy. While on the doxy I started to have neuro
involvement. I emailed and called the Nurse prac, she said she
didn't think it had anything to do with having Lyme.. so I emailed
my doctor. When I told her what was going on she called me on a
Saturday night and said she wanted to see me in her office that
Tuesday .. she was not there on Monday.. Tuesday I go in, she hears
my story walks me to the outpatient department and gets me started
on IV Rocephin. The next day I had a PICC line placed.
Mean time doc checked with the ID doc to get his advice and he said
14-21 days should do it. Day 14 still had symptoms so continued to
21 days. Pulled the PICC line, even though I still had symptoms ..
went to doc that Wed for follow up told her still have same
symptoms.. she freaks says we will need a mediport because will need
months of IV therapy.. calls the ID doc because she wants him to run
the show and he refuses to do the therapy, Says I should be cured
and if I still have symptoms I need a Neuro consult. By this time I
am livid.. why would we waste time and money on a consult.. when 21
days before he said it was TEXT book neuro lyme. So primary doc and
I argue with ID doc and he agrees to getting labs. Wants a titer.. I
insist on not only a titer because we all know they are not a good
indicator, but I want a western blot and co-infections ran.. so that
is where I am now . I had the labs done this Tuesday 9/8 and have to
wait 7-10 days to see what they say. ID doc says if they are
negative he will not see me until I have a neuro consult , an MRI
and an LP. If they are positive well then I guess he will treat me.
* * * * * * * *
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" diagnosis. 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 steroid injections by a good meaning
anesthesiologist I had no immune system left, had developed pneumonia
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 grateful for my Lyme doctor for
not feeling the same way and it was his treatment that saved my
life. I continue to have lingering 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. I probably had it since 1969 since I had a bull's-eye rash
back then. Little did we know it would be 12.5 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 and have
physical symptoms.
Long years of antibiotics have done little to help. IV antibiotics
are helping, but are no longer feasible due to cost. My immune system is so
damaged that I can no longer eat food normally like everybody else
and I am disabled medically. None of this should have happened. No one should have to live
like this! We are still struggling to get treatment after 17 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.
* * * * * * * *
Pam Norman
- I was diagnosed in summer of 2007 after testing negative
twice in Madison, WI, & Mayo Clinic. I remember two rashes, not
bulls eyes, but itchy & raised & a mild fever with one. I could
not/cannot take antibiotics because I have had Cdiff (Clostridium
difficile) but I found a naturopath in Wisconsin who works with a
doctor who is also an LLMD. I have been mostly going to the
naturopath & he has prescribed supplements for me - liquid Cat's
Claw, Sawmento, Spiro, & Lymestat. I also took Artemisinin for a
while but stopped when my liver values went up. My naturopath said
that at my worst point, Lyme was a 20% load on my body. I was never
really sick although I did have some fatigue. Maybe I had been
exposed years before in Californina, I don't know. I have also
been treated with the Rife machine. At my last appt with my
naturopath, he said that Lyme was no longer a burdern on my body or
of significance to my general health. He also says I do not have to
continue with the supplements. This seems too good to be true
considering what so many others are suffering. I pray it is true.
* * * * * * * *
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.
* * * * * * * *
Eileen Richter
- About 9
years ago in late summer, I started experiencing dizzy spells,
weakness, sweats, heart palps, headaches and flu-like symptoms.
Because i had a thyroid growth at the time my docs attributed ALL of
it to this, even though my thyroid levels were normal. They
proceeded to do a surgery to paritally remove this gland and a
superball-sized sudden growth. Two months later, our entire family
got a horrible flu and I tried to go back to work and collapsed.
That was my last working day. Neck pain and severe headaches,
crippling hand and joint pain, slight fever and extreme fatigue
continued. I was finally checked for Lyme, even though the docs
said "well, you live in town so you cant have it". (we lived on the
edge of a rural subdivision where deer drank from our little kid's
pool the previous summer.) They also said, "you don't have the
hallmark rash" (but I had to remind them I did have an oval solid
rash on my ankle after gardening the previous early fall). Then they
argued, "it's March, you can't get Lyme in March!" (had to remind
them we had vacationed in South Texas a couple months before). Also,
I informed them that I grew up on a farm and have ALWAYS lived and
breathed hiking, hunting, fishing and camping. Finally, they did
consider an infectious disease and tested for LYME. My initial Elisa
test was as close to positive as could be, but a Western Blot
negated it. They called and were so happy to say I didn't have
LYME!! Instead I was diagnosed with Chronic Fatigue Syndrome when
the 6 months wait list for THIS disease passed after my "flu".
Since then, I have about every symptom imaginable, and seemed to
have gone in stages. The past 2 years were more neurological, with
unexplained seizure-like attacks and cognitive loss. (I had to give
up driving). The worst relapse ever began in November of 2008, and I
was again glued to my bed, unable to get up most days. It gave me
the presence of mind to research what we ALWAYS knew was my
reality...a heavy dose of LYME bacteria. Thanks to friends met
online, I was retested and positive. My HMO in Madison will not
acknowledge it, even though my LLMD says it is a "reportable" case.
I am just starting treatment the past few months. This May was spent
in hospital and a nursing care center for rehab, when I "crashed"
suddenly with mega symptoms...having to regain strength to walk
again. I am so thankful to still be here and if I had more strength
would fight much harder with my voice. The doctors need to take off
their blinders. The heavy hitter insurance beasts need to grow a
heart and quit counting their precious money while people suffer.
And the public needs to be informed. We will NOT go quietly into the
night. We cant, because the next generation is counting on us to
blast this wide open!!!!
* * * * * * * *
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.
* * * * * * * *
Bill Vandehey - Lost my vision in
my right eye December of 2006. Retina specialists said they did not
know what was causing it but it was due to a swollen optic nerve.
Treated with bactrum and eyesight got better. Then over the next 6
months I came down with extreme fatigue, spending all day either in
bed or on the couch. Muscle jumping, tremors, dizziness, headaches,
cramps, acute ear oversensitivity, unable to stand any noise, motion
sickness, and severe depression. Went to 30 doctors including
Marshfield clinic, UAW Madison, May Clinic where I had a total of 3
MRIs, a CAT scan, spinal tap, EMG test for Lou Gehrigs Disease.
Tested 6 times for Lyme disease but it came back negative every
time. All doctors said I did not have Lyme yet all of them said they
did not know what I had. Finally I found a doctor in St. Louis who
treated me for late stage Lyme with 12 weeks of IV antibiotics. Did
not get better, the doctor gave up and told me to go home. In
September of 2007 I went to see a Lyme specialist in Fond du Lac, WI
who diagnosed me with late stage Lymes. He put me back on IV and
oral antibiotics for 12 more weeks, still no help. I went back on
oral antibiotics until February of 2008. Currently I am fighting a
fungus infection from 10 months of antibiotic treatment. I am
currently trying a natural treatment called Samento Extract. Samento,
I have been told, is what they produce the antibiotic Cipro from.
Six months after I came down with my symptoms my wife began
experiencing many of the same symptoms. She too has been diagnosed
with Lyme. Regular blood tests were also negative on her but tested
positive same as me through IGenex lab. It's been 15 months since I
came down with symptoms and am not much better.
* * * * * * * *
Tessa Whitemarsh
- Starting this spring I began to suffer joint pain, localizing in
my knees, hips, elbows, fingers and ankles. I had an odd rash appear
on my right upper thigh that presented a Bulls Eye for only about a
day but the rash persisted for weeks. After a battle with my Doctor
I was started on Doxycycline 100mg twice a day for twenty one days.
I was told “if this is Lyme you should be feeling better within a
few days”, unfortunately I did not see any improvement. Several more
odd symptoms have appeared through the months including; leg
swelling, blue/purple feet and knees, lymph node swelling, fatigue,
muscle weakness, muscle spasms/tremors, dizziness, headaches, light
and sound sensitivity, rashes and pain in my chest. I have seen 4
doctors who have tested me for Lyme, Leukemia, HIV, Syphilis, TB,
Parvovirus, Auto-Immunes (Rheumatoid Arthritis, Lupus, several
Vascular, and Reynaud’s Phenomenon) all coming back negative. I have
been treated with NSAIDS and Prednisone; the steroids did help my
swelling but made me unbearably irritable. I am currently seeing a
Rheumatologist at the UW Hospital who is thinking I do have Lyme but
is comfortable with the three week treatment and is assuming I am in
the process of “shedding” proteins of Lyme. Stating this is the
cause of my symptoms and could last 6-12 months. I feel uneasy of
this diagnosis and am in the process of finding a Doctor that is
willing to do a more specialized test and treatment. I am a 20
(almost 21) female, whose life has been overtaken by this illness
but I WILL NOT, let it beat me.
* * * * * * * *
Dana -
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!
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