Posted 5/13/2014 6:27 PM (GMT 0)
My recent facebook post:
I, Kate, had my first family Dr appt two weeks ago. I said I
have a positive Lyme test. She asked me about my symptoms. I was about 1/3
through them, when Dr stopped me and said she wants me to see four (4)
specialists for the issues I was listing: Infectious Disease (ID), Neurologist,
Ophthalmologist and Heart. I went to the eye dr, and said all was fine. Then,
my lab work for the Lyme test my new pcp ordered through Quest Labs came back
neg. This lab uses the testing the CDC has for data info only. It is flawed and
only tests one strain out of the 100 in the USA. There are 300 strains
worldwide, and I had been in Europe, so I could have gotten it there. But, most
labs don’t even test for all the USA strains.
I canceled all the other dr appts as they won't show
anything. LD is a stealth spirochete, hiding and changing shape. Quest labs
have only 30% accuracy rate. IGenex, where I tested positive, has a 75%
accuracy rate, but the CDC won’t acknowledge this lab because they are testing
correctly, and the CDC doesn’t want their numbers of now 300,000/yr new LD
cases to sky-rocket even higher. Just this year the CDC finally acknowledged
their past numbers of yearly new LD cases were wrong at 30,000/yr to 10 X’s
that number to 300,000/yr. If they were wrong in their numbers, more than
likely even these new numbers are wrong. Their testing is wrong, which is a
known fact, yet the CDC isn’t changing their flawed testing.
And, I have stopped seeing the Naturopath I was seeing. He
was treating me with the same supplements/tinctures I was already using from
all my research, yet charging us up to $500 per visit out of pocket. He also
used my appt time to talk about his religious activity, other patient's lives,
etc. He had no knowledge of how diet plays an important role in treating LD.
Plus, he was late up to 1 hr per visit, and one appt he double booked, he didn't have me in his book or the other
person who showed up for the same appt time, plus he was sleeping when I got
there.
I am at a loss as to what to do next. This disease is a
nightmare in how it has debilitated me physically, mentally and in every
'relationship' I have/had. I am not well, and I have no quality of life. Most
days I am home in bed, or in a chair, unable to do anything other than suffer
in pain.
I just wanted to give everyone an update. I am one of the
millions of LD shadows pushed into the shadows. I may never get the treatment I
need.
Most people have no idea what LD is, and how it can destroy
a person and any chance for a life without pain, confusion and daily loss. I am
not who I was before LD hit me this hard in 2008. I had a severe flu-like
illness in 2000, and I believe that is when all of this started. LD can lie
dormant and be ‘activated’ if one goes through severe stress, which I did when
I lost my job 12/24/07; someone broke into our home while I was there 1/08, and
other stressors. This is when all hell broke loose inside of my body, and then
in my brain.
I have to accept that I many NEVER be well again. Talk about
despair. While others around me go on with their active lives, I can't even
walk my dog around the block without severe pain and not being able to breath.
Don't feel sorry for me. Pray I get direction to find help and possibly
healing. Every day is one step down for me, one more day that these parasites
inside of my body are destroying every fiber they touch. They are in my brain,
causing me to be confused, and often in a dream-like state where I can't process
what I'm seeing or hearing; like I'm in a fish bowl, where everything is
cloudy.
So, if you do see me out and about , which I try to do things
with Jose as he deserves a partner to enjoy life with, know that I may not be
totally there due to the LD. Know that I may be agitated, or seem loopy, or any
number of weirdness. Know that I’m in pain, pain that doesn’t go away no matter
what I do. Since the dr’s aren’t acknowledging this disease inside of me, there
are no pain meds offered. I may not be able to process what you say to me, or
say/do things that aren’t ‘normal.’ I’m not normal. I’m very ill with an
illness you cannot see.
Why am I sharing all of this personal information? Because,
I am not a shadow: I am a person who is very ill who is being abused and tossed
around by our medical community. I am frustrated, and scared. I am sad. And,
this is happening to millions of people around the world. My experience is the
norm, rather than unusual. Entire families are dealing with this illness, and
being denied help. Children, young adults, and adults are losing their ability
to live lives without pain and suffering and no hope for medical care. This is
a pandemic and it’s happening all around us, as those who are
Shadows in the
Shadows.