To my family and loved ones: Please read the statement below my intro
when you have time. I have been laboring over this email for four
hours b/c it is very difficult for me to think clearly and I have to
revise again and again. Here is some background: A ferocious war
has been raging for a decade or more.in the US, Canada, and the UK, yet
the general public not only does not know the Lyme War exists, but also
does not know there is anything to fight for/about. Few of us know that
our children, parents, brothers, sisters, friends, neighbors, pets,
are in danger nor that the mice scampering around our garages and the
meat from the animals we consume might infect us with stealthy bacteria
that may not cause any problems for months, years, or even decades.
We have not been adequately instructed in how to defend ourselves
against an enemy right outside the door: in our yards, in our gardens,
in our fields of grain, in our parks, in our woods, in our trees;
perhaps inside our house: on our pets, in the floor boards, under the
rugs, in the basement; and.or in our bodies: propelling themselves with
their whip-like tails through our veins and arteries, nesting and
reproducing in our muscles, joints, tendons, liver, heart, kidneys - or
in the greatest fortress of all - our brain. Bird flu, mad cow
disease, mercury poisoning from fish, killer bees get media attention,
yet the current epidemic of tick borne infectious diseases - which is no
longer confined to the east coast or to deer populations - is invisible
to the public because of the stringent criteria required for reporting
tick-borne infections to the agencies that collect the data. Guess who
wrote the reporting guidelines? More and more strains of Bb (the
spirochete that causes Lyme) and babesiosis and Ehrlichiosis and
bartonella are being discovered all over the world every week. I am not
kidding; I get alerts from medical journals daily. The war continues
because treatment for "so-called" chronic/late stage tick-borne
infections is VERY VERY expensive - unfortunately, unlike HIV/AIDS
patients, Bb infected patients don't usually die - suicide is more
probable than death from disease. The bacteria like to keep their host
alive. Instead, those who are misdiagnosed or cannot afford to pay
for their own treatment or cannot get on the waiting list for a
Lyme-literate doctor (there are only FOUR in the whole UK) or whose
intruders manage to survive in the brain and CNS despite repeated and
prolonged antibiotic treatment - those unfortunate ones lose their
value to society (they often lose their families too). They cannot
work, so collect unemployment or disability, eventually qualify for
Medicare and social security and spend all their social safety net
income on medications, therapy, devices to keep their bodies alive, and
caregivers. If the insurance companies lose this war, they will be
hit with a Katrina WAVE that will roll back out to sea and turn around
and hit them again and again. Several doctors I see have told me that
that cannot write the word Lyme disease on any documentation b/c they
know the claim will be rejected. So they write other stuff instead -
which of course keeps the "reported cases of lyme" low too. The ISDA
members who worked on the new guidelines have been investigated by Lyme
advocacy groups and ties to insurance company executives have not only
been documented but also have been reported to Congress.
I cannot stop crying every time I read the new guidelines. A single
document is sweeping hundreds of desperately ill men, women, and
children into a huge garbage pail; the only chance they have of saving
themselves is to sacrifice everything they have: their jobs, their
houses, their pension plans, their children's education fund - to pay
out of pocket for their treatment, to travel abroad to a country where
these diseases ARE recognized and treated or to find a Lyme literate doc
in the US, often driving hours and hours, waiting hours and hours -
hoping for a miracle. Many miracles are being documented in these few
places, but for so many others - sooner or later - the money is all
gone, the mind can no longer remember what life without Lyme was really
like, and/or the very very tired, hurting bodies can not take another
step. Ironically, those who have consigned us to the garbage can do
not, even in the face of battle, recognize that we will not only survive
but also win the war because WE didn't find garbage when we hit the
bottom of the can: we found thousands of people from all over the world
who don't pay lip service to the golden rule: they live it every day of
their lives - no matter how painful, dark, lonely, or desperate they
feel as they watch the indifferent shadows of the world outside pass
over them, day after day. If I digress, forgive me. My mind is very
slippery, today. I am tired deep deep in my bones and muscles. My
head, neck, ankles, and wrists hurt. I am extremely cold - cannot get
warm b/c cold is deep inside my body. For family: If anything should
happen to me, I want a special autopsy under the guidance of a Lyme
literate doctor like Dr. P or Dr. B. I want all of my organs and brain
to be dissected and sent to Bowen research lab or a lab that Drs. P or B
prefer. The lab must perform an exhaustive search for Bb and other
tick-borne bacteria in every organ of my body. I want the autopsy
report to include minutiae: every detail of what was found - especially
where it was found and what damage it had inflicted. I want copies of
the autopsy report to be posted on all of the Lyme support websites, and
copies sent to all of the doctors who misdiagnosed me (so that they can
learn something) and copies sent to the US congressional committee that
is considering funding for lyme disease research. I also want an ad
to be placed in the capitol city newspapers in every state that is
infected with BCBS (note: large US health insurance carrier) with
highlights of the autopsy, a statement that I tested negative FOUR times
on the test BCBS requires for Lyme diagnosis - which postponed my
diagnosis and treatment for months, causing dicfficulties for all of my
students and for my colleagues who had to take over when I collapsed
four weeks before the end of the spring semester. You can add anything
else you want to say. * This is not a suicide note.* I am, however,
very ill, and complications can arise, so I wanted to get this in
writing while I can still see and type. . Finally, I would like to
say on behalf of all the "Lymies" - We need to know you believe us --
that you recognize that we have a dangerous disease, which entails, for
us, not just dealing with a horrific disease but often at the same time
making plans to survive so many potential losses: jobs, benefits,
hobbies, friends, homes, hopes, dreams .... the future becomes so fuzzy
that we try to live in the present only to have something we forgot
about smack us in the head two or three times a day. We need our
families, friends, and loved ones to NAME and DESCRIBE our DISEASE so
that it MATTERS and is COUNTED by all the people you meet on all of the
paths of your lives. And just in case we forget, you can also
kick the can - hard - every once in awhile to remind us that you are
still there - cheering us on. Love always, Sandy