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PENNSYLVANIA
Robyn Chilson -well. The Lyme Disease bacteria lives off the
connective tissues and destroys the joints. So, I continue to
struggle with my illness, but had I not been my own health advocate,
I'd be disabled or dead. I've reconnected with old friends,
and my husband and my sons stood beside me and supported me through
all those hard times. But the idea of not finding treatment haunts
me still! What if I hadn't? Would I be in a nursing home at age 44?
Or dead? Yes, people die from Lyme Disease. I've lost several people
to this damned disease. In fact, some were people who I helped find
a doctor and get diagnosed. I still live in fear that my infection
now in remission will rear its' ugly head again. But I try to stay
active, watch what I eat to support a healthy immune system, and to
deal with infections quickly when I get one. I now work with the
Wellness Train and moderate a Lyme Disease Website. I send out
information at the business we own (a campground) and try to educate
people about Lyme Disease! In addition, I helped to develop a Lyme
Bear that is sold to raise funds for Lyme Education and Research!
You see it was all part of the bargain I made with God -- as I
prayed for a cure, and help. The bargain was that in return for my
wellness that I would try to help others!
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Michelle Ferro - I
was bit by a tick and pulled it off of me in 2000. I had symptoms
then but did not realize it. Constant sore throat would get better
with antibiotics then come back once they were done. I saw the Dr.
every Saturday for six months...my tongue also felt swollen...and I
had chest/heart pain. 2005-It hit hard. I was either re-infected or
the lyme became active again. I had a bad battle with bronchitis
that started as a sore throat on May 13th 2005, it ended in June,
then started right back up again in August...starting with a sore
throat again. I felt terrible a feeling I had never felt before. At
the same time I had bad wrist pain, and neck pain...I thought from
sitting at my desk for too long. I vaguely remember a purplish bite
on my leg in April 2005, at the same time I started walking during
lunch at work in a campus full of deer and Canadian geese...walked
through grass plenty of times. I did the Dr. shuffle in and out of
ER 12 times, my Dr. diagnosed me with migraines, which 2 other Dr.s
said I did not have that what I had was systemic. Finally found a
lyme Dr. and I'm not undergoing treatment. I am in the process of
losing my job and I am only 30 years old. Sept. 2005 I had classic
lyme symptoms...dizziness, sensitivity to light, sore neck, wrist,
head pressure...drug reaction. Neurologist even ordered a lyme
western blot but Quest only did an IgG which tests for past
infection and IgM was never done by Quest. I feel all of my
suffering could have been avoided if the Dr. had just seen the signs
of lyme disease...one huge clue-getting worse on antibiotics.
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Heidi Healy - Was finally diagnosed with Lyme in 2002 after I
had seen about 12 doctors for many different reasons. I believe I
picked up the disease when living in NJ. My husband and 3 children
also have it, all acquired different ways. My 8 year old got bit
twice. Doctors believe my 6 year old got it from the birthing/breast
milk issue. And my beautiful adopted Chinese daughter just got it
last August when we vacationed in Cape Cod. The doctors I used in NJ
did not do the right tests at first. Lyme never came up in the blood
first. It was first found in the urine, then a year later in a
stomach biopsy. Finally showed up after 20 PCRs in my blood. Went to
Dr. B finally and he did all IGenex testing on me. The Babesia came
up also. That was never treated and now it is chronic. It is so
important to have ALL the right tests done. And then it is so
important for your doctor to treat the lyme and it's co-infections
with the PROPER drug and the PROPER dosage. If there is one lesson I
have learned from dealing with this is to make sure you have a
doctor treating you who truly knows the disease inside and out. They
should always do IGenex testing on you. MDL rarely came through for
me or for my kids for that matter. The children's diagnoses were
delayed because of tests through MDL that never caught it. We need
more families to get involved and voice our stories. I'm sure there
are many families out there struggling with incorrect diagnosis and
heartache!
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Jason Kalbach - In 1994 I
had terrible back and neck pain. Was told it was a pulled muscle. I
developed severe brain fog and fatigue, cognitive problems,
nightmares, photophobia, and a fainting spell. Told it was viral
Meningitis. I was only 16 yrs. old, and had great difficulty in
school processing information, etc. Shortly after, TERRIBLE, CHRONIC
HIP/BACK/GROIN pain. I saw too many doctors to count. No one agreed
with "viral meningitis" diagnosis. Doctors could not tell what was
causing my terrible pain. I was told arthritis, old sports injury,
bursitis, torn ligament, sacroiliac dysfunction, back injury, and
others. In 2003 came a worsening of, and new symptoms. Numbness,
throat spasms, trouble swallowing, terrible neck pain, and more
doctors & tests, but no definitive diagnosis. Tests showed an
unidentified "inflammatory arthritis," in my body; bilateral ulnar
neuropathies (peripheral neuropathies), white matter brain lesions,
a vascular brain malformation; with unknown cases. Diagnosed with MS
in August 2003 despite all this and normal evoked potentials, no
oligoconal bands in the spinal fluid, and no myelin basic protein.
The same Neurologist later said, "I don't think its MS". I asked if
it was Lyme, due to a persistent sore throat, rashes under my arm
pits, and a new MRI of my brain showing SEVERE CORTICAL ATROPHY. He
said, "yes it could be Lyme," and ordered tests, but I went to an
LLMD, and I was CDC positive on the IgM and IgG Western Blots. Brain
Spect showed "global cortical pattern of hypoperfusion. Due to delay
in diagnosis/treatment, I became disabled at age 26, and to date
have not yet recovered despite being on antibiotics and taking over
20 medications daily for more than two years. Due to our pitiful
healthcare system and insurance industry I have lost nearly
everything I own. Health Insurances refuse to pay for treatments,
medications, or if they do pay, they reimburse 1/10 of what is
spent. Due to the bills, I went bankrupt, despite full health
coverage. I lost my home, health, career all because of a system
that wants to charge and collect fees without doing a correct job!
We should all have been doctors because you can do a job and charge
IRRATIONAL FEE'S, EVEN WHEN IT'S WRONG! Not many jobs like this! I
feel because it's not they who are affected, so they don't care. All
they seem to do is keep the production line moving, get you in, out,
and charge your insurance. When you requre time and careful
evaluation, nobody wants to put in the time to take a careful
history, diagnose properly, etc. When you require complex treatment,
PCP's run, and are scared to death of the insurance companies with
whom they have contracts, disciplining them for ordering tests or
treating you in ways that cost them money! This system is a monkey
court! It's an absolute joke, and one of the biggest scams I have
ever seen going! People in this country need to wake up, and take a
stand, as our healthcare system is honestly, TERRIBLE!
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Catherine Kennedy - I'm
soon to be 53 years old and always been in good health which I've
never took for granted but as the start of June 2006 I was having
mostly lower back pain which then moved up to the middle of my back,
which hurt so bad just sitting down in my recliner that it took my
breath away and it move on up to my shoulders and neck. I then
started getting a low grade fever and fatigue. So knowing something
was up because it wasn't like anything I've experienced before so I
made a dr. appointment. Meanwhile the same day I literally dragged
myself to the shower and when the water hit my back it was stinging,
which it didn't anywhere else so when I got out I looked at my back
in the mirror and that's when I discovered the bulls eye rash. I was
almost relieved because at least now I knew what it was. I was put
on 21 days of Doxycycline and that's it. period. I wasn't told to
come back for a follow up, nothing. I have read so much about Lyme
this past month and it scares the hell out of me to read all the
misery some people go through and my dr. acted as though it wasn't
much worse than the common cold. I know my body and I do not feel
myself. Since taking and finishing the abx, I've been getting pain
in different places that last from 3 to 5 days and then goes away. I
feel it isn't resolved and I would feel better finding a dr. that
treats people with Lyme.
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Maggie Marchiani - Like so
many others I was misdiagnosed for so long Lyme has taken its toll.
It has totally destroyed my nervous system. It is eating my brain
stem. I can hear an ant crawling on the windowsill 3 houses down, my
spelling & math skills are at a 4th grade level & I'm 42, & I get
lost in my living room and all the usual Lyme symptoms. I had 2 picc-lines
& I still get a positive spinal tap result (love them ...
NOT!!!!!).I do all I can to preach Lyme awareness. Because I cant
imagine a child living with this. Blessings to all with & those you
know with LYME DISEASE.
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Robert Martin - I have lyme wife has lyme and she was never
bitten by a tick. This disease may be spread a lot easier than we
think? I went undiagnosed for over 13 years and I was given western
blots and other lyme tests every year because of recurring tick
bites and attachments and not one of the hospitals ever put me on
antibiotics. When I found a lyme Doctor LLMD who understands lyme
and was tested by IGenex and given antibiotics by LLMD to provoke a
response by freeing up antigens and killing spirochetes and then
tested I was highly positive 2 strains and co-infection. I am doing
better but not through yet.
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Evelyn Throne - My beloved
son-in-law was sick for many years with an assortment of ailments
from sinus infections to numbness in his hands and feet to back pain
to stroke-like episodes. He finally got so sick that he lost his
hair and spent much of the time either in bed, in excruciating pain,
or both. He was seeing many doctors, and got diagnosis from
radiculopathy (inflammation of nerves in the spine) to epilepsy, and
too many others to count. We couldn't really pay the attention we
should have to him, because during that time, his son was having
many brain operations to deal with Hydrocephalus. It got to the
point that he just decided it was ok to die. Of course, we
disagreed, and got him into a hospital where he developed a high
fever, and almost did die. The doctors were mystified, but luckily I
remembered a woman who said to me in a grocery line that if I knew
anyone who was sick, and didn't know what was wrong with them, to
please check out Lyme Disease. Her voice came back to me, and we had
the answer. The journey has been up and down since then, but we keep
up hope. I am starting a Lyme support group in the Lower Bucks Pa.
area and I hope we can spare others from having to go so long
undiagnosed, and help them to know they are not alone. Since Mitch's
diagnosis, we have gotten his son Brandon diagnosed at Dr. Jones's
office, and believe he was born with congenital Lyme, and that
caused his many problems, including Hydrocephalus. We are in the
process of figuring if my daughter is still infected with Lyme. She
had a rash which came and went during her pregnancy but was assured
it was not a Lyme rash (sure it wasn't). After all the incompetence
of most of the doctors we've encountered I'm just praying they wake
up to this growing epidemic soon.
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Tom Trexler - Been diagnosed with
Lyme Babesia. Taking drugs since May 2004, sicker than ever. What am
I doing wrong? Anyone beaten Babesia?
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