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Alison's Story
Life as I knew it ceased to exist for me in 1994, three days after
receiving the second booster of the experimental Lyme vaccine being
tested by Connaught laboratories. Although it has since been determined
that I had a pre existing case of Lyme before volunteering for this
vaccine, I was holding my own and managing to lead a normal life. But
since that second injection, my world has been turned upside-down.
It began with a fever, sore throat and general body aches but rapidly
progressed into an all encompassing, debilitating disease. I have a
picture hanging on my wall, taken the last day I felt like myself. I
spend hours staring at it, trying to catch a glimmer of that person in
the one that I have become. My entire personality has changed and I do
not like who I am now. But I remain powerless to do anything about it.
I am suffering from degenerative joint disease and have had to have
surgery on both my knees. My back is disintegrating and to quote my
doctor, I now have the spine of an 80 year old although I will only be
45 this winter. I have also been told I suffer from damage in the
sensory nerve center of the brain and that there is nothing that can be
done for that. I have developed a heart condition, thyroid condition,
endometrial hyperplasia, urinary problems, clotting problems and
neurological problems. When my psychiatrist was filling out the papers
sent to him on my behalf from SSDI, he described me as having dementia
and a personality disorder.
I read the words and found it almost
unbearable to acknowledge that they were being used to describe me, and
yet there is no way I can deny that it is true. During
neuropsychological testing, it was determined that I have suffered great
losses in the areas of memory and cognitive thinking. I no longer have
any friends who do not also suffer from Lyme Disease and I barely speak
to my family. The sense of loss I feel because of this is so
overwhelming, I can hardly bring myself to appear in public.
I do not
trust my ability to control my rage and I cry at anything and
everything. I am no longer able to drive because I fall asleep behind
the wheel of the car with no warning, yet I can not sleep in bed at all.
Lyme is a horrible disease. There is so much controversy surrounding it
that the important points pertaining to it are getting lost in the
shuffle. The most important to me, is the overwhelming need to find a
cure for it.
But I would be remiss if I did not vehmently stress that
the current vaccines, the one that was patented recently, and the one I
received, are not the answer to the problem.
In some respects I am lucky. I have a knowledgable doctor who is not
afraid to aggressively treat my illness, and so far, an insurance
company who has not balked at paying for this very costly treatment. I
am provided with as much narcotic medication as I request and I have an
amazingly understanding and compassionate husband.I have met many, many
wonderful people also suffering from this plague and amongst them, I
have a strong support system.
But if I was granted one wish, it would be
to turn back the clock to the very second I agreed to take part in the
Lyme study. And, I would never ask for anything more, because if this
disease did one thing for me, it helped me set my priorities straight
and I have learned that there is nothing more valuable
in life than good
health.Alison E. Schettini
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