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NEW YORK
Julie Antenucci - I got Lyme and 4 co-infections in March,
2003 while living in Frederick Co., Maryland. I was 9 months
pregnant and was bitten by an adult deer tick just above my navel.
My ob/gyn would not deliver my baby and he lived under a bull's-eye
rash for a week before an ultrasound doctor insisted he be delivered
immediately. I got the standard 4 weeks amoxicillin and so did my
baby. We both still test positive for Lyme 3 years later. I have
been through the gamut of symptoms but my little boy has happily
been nearly symptom-free. For me, the disease started with hip
weakness which prevented me from walking. I then developed flu-like
symptoms, sweats, vertigo, and joint pain. Every doctor I turned to
for help told me I had conversion disorder because I had a history
of postpartum depression. They thought I was looking for attention,
trying to get out of taking care of my children, etc. Mind you, I
already had 2 boys that I had been taking care of just fine for 5
years prior to getting Lyme, the oldest of which has Down syndrome
and autism! The illness forced me to leave my job, wait 2.5 years to
get disability, move to my home state of New York so my family could
watch my children, and nearly caused my husband and me to divorce.
We still carry tremendous stress to this day as I am still not well
despite the help of an excellent Lyme specialist. Today my symptoms
consist of forgetfulness, seizures, painfully swollen and curled up
hands, joint pain, limping, hoarseness and slow speech, searing
headaches and backaches, exhaustion, chest pain, nystagmus,
depression, paranoia, and alienation. I recently went to the ER with
low potassium levels - I was spiraling towards death. I believe I
will die from this disease some day. All the doctors around here
think I'm just a nut and even told the paramedics they were "angry"
I was coming back to the ER yet again. I've watched my hopes and
dreams fade away, and my faith has been tested to the limit. I won't
give up, though, for my kids. They need me and I need them.
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Barbara Eylers - I was bitten in
1993, had bulls eye, given antibiotics. In 2003 I had pain in hand,
had to wear brace, had 21 day infusion of antibiotics, I felt
better, but very tired. In July 2005 had high fever twice. I decided
to see a doctor in Rhinebeck, N.Y. He started a series of vitamins,
minerals and herbs. I took this for 6 months. I now take a pack of 5
pills in the AM and PM. I feel 90% better. He also had many blood
tests taken to see what else was wrong; he has treated me for
thyroid as it was not functioning properly. I am so grateful to him.
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Grace Ferguson - I became ill in 2001. Doctor said I had a virus
and was depressed. Finally found doctor who did testing and referred
me to an LLMD doctor who is trying to get me better.
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Wild Condor - Share in the
amazing true story of Wild Condor's 14 year fight with Lyme Disease.
Learn how to fight chronic infection with a killer attitude and
fierce determination. See WILDCONDOR.COM for the full story!
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Ann Kretzschmar
- I am so distraught over my little 3 year old
grandson. He was diagnosed with Lyme after we discovered a severely
swollen right knee / 5.2 test results. He is not himself, yet the
pediatrician said the 30 day 2 a day antibiotic should
cure him. He sweats during his naps and wakes up soaking wet. He
complains of his leg hurting his arm hurting. Others say he may be
making this up--I think not. At 3 your honestly and innocence is
one of your gifts. Where to go, what to do. His mother is guilt
ridden thinking she somehow should of noticed this evil tick. They
live in Columbia County down in the Hudson Area, one of the highest
rated tick areas. I hope in this progressive world of ours where we
can transmit just about anything over the internet and go to the
moon, somewhere someone can come up with a cure for this terrible
disease. I am on the internet daily trying to find something to help
my Grandson and his Mama to alleviate the torture they must endure.
The not knowing if this will affect him throughout his life and just
praying to God to take it from him and hoping that it is a mistake
and he really doesn't have this disease after all. Thanks for
listening --- I feel better writing this even to this computer -
even if no one else reads it. So much for nature and enjoying the
outdoors-
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William Moody - I was treated for
Lyme Disease with IV antibiotics when I was 11 years old. Although
I never had a positive test result. After 1 month of treatment I was
back on my feet again, I was confined to a wheel chair, and over the
past 5 years was in fairly good health. I did have some bouts with
joint pains. In November 2005, my legs collapsed from under me and I
was in severe pain in my legs and shoulders. My lymph nodes were
swollen in my groin and under my arms. We figured the Lyme was back
and I would need treatment again. After going to the hospital and
having several tests and Lyme test, all came back negative, they
told me it was psychosomatic and I did not have Lyme disease. Since
than I have been to psychiatrists that say my condition is medical
and the medical doctors say it is mental. I am now in a wheel chair
again. I have little feeling in my left leg and limited feeling in
my right leg. My groin area is swollen most all the time with a lot
of pain there. I was taken to a doctor in CT. who had a test for
Lyme done at IGenex lab and it came back positive, but he cannot
order the antibiotic because we live in NY. He did put me on Zithro
though and there is a slight improvement in my joint pain. I also
had a herxing event while on the Zithro. I was put in a hot tub
hoping that it would help with my joint pain and when I got out of
the tub I felt like I was going to pass out, I couldn't even hold my
head up, and was rushed to the hospital. I had no reflexes in my
legs. I really don't even remember much about that night, my
grandmother told me what happened. No one could figure out what was
wrong with me. They did a spinal tap and it was normal. My
grandmother went on the internet and found out that it was called
herxing. The Lyme bacteria reacts to very hot conditions and "fights
back". Proving to me I must have Lyme disease! The NY doctor say
that positive test only proves that I was exposed to Lyme Disease.
We are now searching for a reputable doctor in NY that will give me
the IV antibiotic.
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Chris Nimphius -
Nearly 2 years ago
I was on spring break having the time of my life. I remember very
vividly when my first symptoms started to manifest. It was the last
night of our stay. We finally made it back to the hotel, which
seemed like an eternity to get to. I tried to sleep before we had to
catch a flight back home in the morning but I had no such luck. Then
the notorious preamble to Lyme started. Suddenly I had a the flu
like symptoms where I was freezing yet sweating profusely all at the
same time. Morning came and I stumbled my cinderblocks I had for
legs through the airport while trying to maintain mental vigor and
not fall. I finally made it back to my school and went right to the
doctors. They tested me and nothing serious came back. They gave me
some antibiotics and sent me on my way. For the next week I couldn’t
sleep and felt as though I was letting out a gallon of sweat each
night. My sheets were completely drenched. I managed to muster up
enough energy to get to class but was totally in cloud 9 and
disconnected. A week went by and the night sweats started to subside
but I still couldn’t sleep and was extremely fatigued. I was
reiterating to my mother what I had been experiencing. She had
talked to a doctor who insisted that I go for walks in order to get
vital energy from the sun. I was fine for 3 months never felt any
residual affects from that incident. I had taken a job down in
Maryland where I was very over worked; working 6 sometimes 7 days a
week with a minimum of 70 hours a week. It was rigorous and my body
was starting to send indications that I was starting to get worn
down. After a while I realized I just couldn’t do it anymore. So I
quit and tried to live a mundane life for the next 2 weeks. The last
night before I returned home to NY I started to become real
lightheaded again and that night my bed was drenched in sweat again.
I didn’t have anymore night sweats but I was beyond lightheaded on a
daily basis now. I tried to ignore the signs and thought it was
sinus pressure. This went on for about a month and the worst part
was I had just started a really promising job. I was over one of the
big tilt skillets at work when I suddenly lost my legs and had to
sit down for a minute. I managed to regain composure and make it to
the bathroom. I tried putting water on my face, taking deep breaths
and drinking lots of water. I had managed to convince myself that I
would get through this. I continued doing my job while leaning my
body up against every table or object I could; in order to keep
stable. I drove home that night and almost went right off the road.
the oncoming traffic was too much to endure and I couldn’t stay in
my lane. I finally made it home and hugged my mom told her what had
happened then proceeded to break down in tears. I felt all the
symptoms daily now coupled with massive head pressure and migraines.
I became sluggish and normal tasks looked very problematic for me. A
month into the break all my symptoms seemed to exacerbate and I
could barely walk. I went through the whole convoluted process of
seeing doctor after doctor, specialist after specialist which each
had there own words of wisdom and take on the matter. I convinced
one of them to treat me for lyme even though my test had come back
negative. I took the 3 weeks of doxy and it did nothing but make
things worse. I even tried acupuncture to see if any of this was
stress induced. On my 23rd birthday I checked into the hospital
suggested by neurologist to run a battery of tests on me. I had
MRI’s, CAT scans, Spinal tap, HIV, AIDS test and saw an infectious
disease specialist. Everything came back stellar except for an
elevated white blood cell count. They released me from the hospital
told me I had migraine issues and prescribed meds for them. They
suggested I see a balance specialist next where I had a balance test
done. It came back with slight damage in my left ear but was at the
marginal level. The specialists said I had a vestibular problem and
would need balance therapy. So I went along with it and went for
balance therapy 3 times a week. Each time I went my vertigo would
just increase gradually and the therapist was very perplexed that I
hadn’t shown any improvements. I decided to go seek a second opinion
at the Eye and Ear Infirmary in NYC. I took another vestibular test
and various others. This time nothing came back at all. I went to
the head of the department who treated me for a solid 4 months and
once again no substantial gains. Now I was deteriorating rapidly. I
had now completely abandoned the life I once loved and cherished so
dearly. I couldn’t move out of bed and trying to maintain simple
dialog with someone now seemed impossible. This is when all the
neurological factors began to come into play. The brain fog, poor
concentration, poor memory, shaking, light sensitivity, anxiety,
dyslexic indications and total problems with sensory integration. A
friend of the family got wind of someone that had beaten lyme and
what her symptoms entailed, She urgently told me that I should go
see her LLMD that her case sounded and awful lot like mine. I booked
my first appointment with an LLMD in Mount kisco, NY. I went into
the office wrote down my symptoms and gave blood. The doctor
immediately put me on Amoxicillin and was convinced I had lyme. My
blood work returned and I received a negative result once again. The
doctor this time was not discouraged by this and stated that this
frequently happens to about 50% of patients due to poor tests and
such. He said its often referred to as a false negative. The only
concrete evidence was that my white blood cell count was elevated
substantially and he calls these lyme marker indicators. So as of
now he is basing my case on the literature and not the equivocal
tests and knowledge that surrounds this dreadful disease. The oral
prescriptions I was on for 2 months did virtually nothing for me so
now I am on the big dog antibiotics. The first 2 months I was
starting to make some head way. suppressions in fatigue, dizziness,
migraines, heart palps, brain fog, concentration, blurred vision and
so on. Then I started to herx realll badly around week 10. Now all
these symptoms returned full fledged if not worsened and now new
symptoms began to emerge. Now I started to feel excruciating pains
throughout my body and became intermittently numb throughout the
course of the day. The doctor says this is a telltale sign of good
things to come and I trust him implicitly. He has done wonders for
many and I confide in him immensely. This is now my 14th week of
treatment and am still in the abyss of a herx. I know this is going
to be a massive hurdle and is going to be a trial by fire in all
essence of the phrase. But I truly believe I will see the dawn of a
new day. The sense of solidarity in the lyme community has lifted my
up when I am in total despair. So as a testament to myself, family,
and supporters I will fight this as gallantly possible and make sure
when I see this through that those who are still suffering or have
just started their journey towards health find the courage and
support they so long for. Although difficult to deal with all the
slander, scrutiny, and lack of credibility surrounding this disease
we all have a purpose here. And that is we will set the stage as we
are the pioneers for this disease. Because of our integral part,
there subsequently will be a voice for those in the future and
hopefully a diagnosis before it becomes incorrigible. Stay strong
everyone and carry on!
* * * * * * * *
Valerie Primavera - I have had
Lyme disease since 1993. I was diagnosed after 8 months of being
sick and seeing multiple doctors without diagnosis. After a spinal
tap I was finally diagnosed with lyme and treated with IVs. I was
better in two weeks and went about my life only to find out that
this disease would become a relapsing nightmare. Over the last 12
years I have been on many different antibiotics had many ups and
downs and have struggled greatly. I was forced to quit my job in
2000 and as of now can only work part time. This disease can be
devastating and debilitating and destroys lives. It is not at all
easy to cure and extremely difficult to diagnose. It is an epidemic
that needs national attention immediately to raise awareness to the
much needed research and education!
* * * * * * * *
Cathy W - No one believes me that
I am sick. Finally my phycopharmacoligist read my blood test - I had
3 titers (bands) not enough for other doctors to give me a
diagnosis. I was bit by a tick about 5 years ago. I went to my
regular doctor with the rash, she gave me salve and said it was
nothing to worry about. The rash got bigger, the salve had no
affect. It finally went away, but I still have a residual mark on my
shin, dark although very light. When I take the antibiotics which I
have been on for just about a year I get so very sick. My bones hurt
from the inside out. When I go to sleep at night I hurt all over,
sometimes even the sheets hurt when they touch me. Forget physical
touch, what once felt nice now it is very painful. Who is going to
do something about this terrible disease. I was told that penicillin
would do the trick - but no one will give it to me. I am just
frustrated. I have not worked full time in over a year since my very
bad outbreak in 2005. I have my own business too - no disability - I
am afraid.
* * * * * * * *
Victoria Wilcox - I was first
diagnosed with Lyme Disease in June 2005. I had the typical bulls
eye rash but still managed to get misdiagnosed because the ER doctor
believed it was only an infected hair follicle. I was only diagnosed
when I had a seziure on a missions trip a few weeks later, which led
to extensive testing. The infectious disease doctor put me on
antibiotics for a few weeks, and with my mom fighting for me to get
more antibiotics, I started to feel better. Then at the beginning of
my sophomore school year (Fall 2006) I was feeling off, and as the
school year progressed I started to get ear infections and eye
infections back to back. Then I started feeling like I was missing
half of my classes that I was going to, due to little seizures I was
experiencing that were making my brain completely stop functioning.
On December 4th I had a seizure in school and I passed out. The
nurses got me into a wheelchair, but they couldn't keep me conscious
the whole ride to the nurse's office. I was rushed to the ER by
ambulance. After a few weeks of testing the cardiologist asked if we
had considered re-testing for Lyme Disease or going to another
doctor. With that we said yes we had considered Lyme Disease, but we
had not considered another doctor. He then referred us to the
pediatric Lyme specialist Dr. J in Connecticut. When we called him
he did a phone evaluation. Meanwhile, I had been taken out of school
and my life had become completely flipped. When the doctor heard my
story and symptoms, he diagnosed me with Lyme Disease and meningitis
of the brain and ordered some extensive brain tests. They put me on
new antibiotics and hoped that I would respond to them. At this
point I had donated around 90 vials of blood to
"operation-figure-out-what-is-wrong-with-Victoria". I started
getting even sicker and I was getting so sick that I was just
thinking that it would be a lot easier to just give up at this
point. The doctor called this a herxheimer reaction and he said that
it was because the spirochetes were exploding and sending toxins
through my body. So it was good and I guess this makes the saying
things have to get worse before they get better come into hand a lot
easier. Then as I was showing no more progress within a few weeks
after Christmas Doctor J fit us into his schedule sooner than
planned. The doctor was pushing around to feel where my tender
points were and it was basically every where he pushed. I was in
extreme pain and at some points I couldn't sleep because of a low
grade fever. On June 4th, 2007 I had another seizure. This was the
first seizure I had while on antibiotics, and it was by far the
worst. I collapsed in school and I was taken by ambulance to our
local ER. The doctors there were baffled with my condition and had
no idea what to do with me, so they decided to send me to NYC to
Columbia Presbyterian Children's Hospital which happens to be right
next door to the Lyme Disease Association's brand-new Lyme Disease
Research Center. Unfortunately for us, I was not at the Research
Center. I was in the Children's Hospital, where the doctors were not
Lyme Literate and they led me to believe I was going crazy. I was so
frustrated with the whole situation all I could do was cry. I just
didn't understand how these doctors who claimed to be so good at
what they do be so naive to how I was feeling. They just didn't
understand. Although I can't remember all of that week until Friday
I do remember how frustrated I was Friday. By then they had taken me
off my antibiotics and told my parents that I didn't have Lyme
Disease anymore and that I was supposed to go to therapy and with
that and thinking good thoughts I would be better. Unfortunately for
me that's not the case and just thinking happy thoughts at this
point won't get me better although thinking happy thoughts with
antibiotics will. We got discharged and I came home from there. Then
the 13th of July I got my picc line and I have being treated by that
lately. Hopefully the picc line will be the answer and be what we
needed although things haven't gotten better yet. All I can say now
is that I have a ton of faith in God and slowly I am going to get
better. It's a long process but, it's a process I have to go through
to become the girl I once was. I also have learned that no matter
what others tell you if you continue to believe in yourself you can
reach any goal you want to. As a wise man once said the greatest
revenge is to accomplish what others say you cannot. Since I had
been extremely sick this past winter, my friend Sarah and I had
noticed that people really didn't know all that much about Lyme
Disease (Sarah included!). So we decided we wanted to start a Lyme
Disease Awareness walk in our area and potentially have the walk go
national. As our event gains more public knowledge, it's even more
noticeable how many people really have no idea of what Lyme can do to
a person. Hopefully our Lyme Disease Walk will create awareness in
our community, and if nothing else, spread knowledge that may help
someone else out who is in the same situation Victoria was.
* * * * * * * *
Cathy Wild - Just about 4 years
ago I was doing a lot of camping in Ct. I noticed one day a rash on
my shin, but no bulls eye. I went to my GP and was given an
ointment to put on the rash, but it kept getting bigger and bigger.
During that time until now - I have become ill. I was told by that
GP that I did not have enough titers. I have yet to have a doctor
to confirm the lyme disease because here on Long Island Finally, I
showed the blood test results to my shrink and with all the
depression and with all my other symptoms he agreed with me. I am
taking antibiotics once a day now since August. I don't really feel
any better, but can get up out of bed and do menial tasks. I am
scared, and feel as if I am invisible.
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