Lynn L's Story
Lyme Vaccine Volunteer
Written by Lynn Lane
I am writing to you in hopes of disclosing to the public the definite
possibility of severe adverse reactions to the Lyme vaccine. My husband and
I are living examples of what can happen to a person living on Cape Cod - or
any other endemic area for that matter.
Totally unaware that we had a long history of Lyme or “Lyme-like” symptoms,
we volunteered to participate in the Smith-Kline Beecham 1995 Lyme vaccine
trial study. I was forty-one years old.
We live in a wooded area and have many animals.
My sister and her daughter had been quite ill with Lyme (they live on the
Cape, too) and my husband and I were very interested in the study.
Originally, we were supposed to receive $350 for participating, but once
signed up, that proposal was withdrawn. We figured, “Oh, what the heck, it’s
for a good cause.”
We had blood drawn, and by Western Blot testing were told we were all set to
receive shots. So it began.
Our first inoculation was March, 1995. The second inoculation (or first
booster) was in April, 1995. I was seeing a chiropractor at the time for
neck and back pain.
The chiropractor noticed a decline in my physical
well-being after receiving the vaccine. I thought at the time it had nothing
to do with the vaccine, even though it was a double-blinded study. The
chiropractor did not agree. He was concerned.
That summer of 1995, on July 4th, after a busy day playing an hour of
volleyball and walking two miles or more to and from the fireworks, I went
to bed pain-free and with no injuries, only to wake the next morning with an
extremely swollen left knee that I
could not walk on.
That was the beginning of missed work. At this time, I
naively did not know that my knee problem had anything to do with the
vaccine. I just plugged along - what else could I do as the mother of three
children ages 15, 12 and 5? I attributed it to growing older. However, after
the third inoculation (second booster), which I received March, 1996, within
two days I became very , very ill. Having suffered PMS all my adult life, I
thought maybe this was the reason - but something was different this time.
Something was terribly wrong with me. I decided that maybe the chiropractor
was right, so I began my research on the subject of Lyme disease and its many
symptoms. With every piece of literature I read - books ,cases, testing,
causes, cures, controversy, etc. - I became increasingly concerned. So many
symptoms were just like mine. I contacted the doctor from the study who had
administered the inoculations( Dr. Tratt), and he agreed for me to come to
his office for an evaluation.
Waiting for the doctor while my four-year-old played near the window, I went
over and over in my head just what symptoms and concerns I would speak to
the doctor about - rashes on my face and body, severe pain, anxiety, nausea,
chronic fatigue, numbness and tingling of extremities, buzzing in my head,
brain fog, etc., etc. I expected to be given more blood tests and discuss
reasons that would explain my symptoms.
After Dr. Tratt quickly looked me
over, obviously irritated at my son for touching the blinds, he dismissed me
by saying, “You just have PMS and have also been scratching yourself - you
don’t have Lyme disease.” I left the office in tears, thinking, “Oh, My God,
what have I done?” I am NOT a complaining person by nature and it took a lot
for me to go see this doctor. I just don’t worry about things, but now I was
worried.
I then chose to order my own Western blot through the chiropractor. The
results were sent to an infectious disease doctor at Boston University
Medical Center, on the advice of a representative at the Lyme Care Center in
New Jersey, I had called. The doctor at B.U. Medical Center called me and
said I did indeed have Lyme disease, and that I had it for quite some time.
He also told me that the vaccine alone could not have given me this test
result. He sent a letter to Dr. Tratt telling of both his clinical and
serological findings. I in turn sent a letter to Dr. Tratt requesting
treatment as well as withdrawal from the study because I was so ill.
He
would not treat me and refused to help me find out what my blood tests
showed prior to inoculation. He wanted me to stay in the study until
October, 1995 so I could find out what was really wrong with me. I said,
“but I’m sick now - that’s six months away!”
The doctor at B.U. Medical Center was willing to put me on oral antibiotics
proceeding an appointment with him in June. The orals were continued until
September, 1996, at which time I decided to attempt an appointment with
Allen Steer, MD, the principle investigator in the SKB Lyme vaccine study.
This was done on the advice of my legal representative from New York, whom I
acquired by referral from the Lyme Care Center in New Jersey, also. The
attorney was hoping Dr. Steere might “come clean,” so to speak. YEAH, RIGHT!
He diagnosed fibromyalgia, handed me a brochure with information about
fibromyalgia, and said, “Good luck.” After the x-rays and being stuck with
needles, I knew I had gotten nowhere. Driving was extremely difficult for
me, and it had taken so much from me to drive 1 1/2 hours to Boston. I had
to stop twice for fear of passing out.
I was light-sensitive, prone to migraines, had to tolerate severe migrating
pains down my left leg as well as my hips, ribs, shoulders and both arms. I
also had intermittent diarrhea, inability to speak correctly or recall what
I said or did a few seconds before, etc., etc. Many of you know the
symptoms - I don’t need to list them all.
Every single thing in my life became excruciatingly difficult if not
impossible. I felt useless, and to top it off my research into Lyme disease
lead to the discovery that all three of my children as well as my husband
also had Lyme disease.
We are all being treated by the doctor at B.U.
Medical Center. I was forced to share even this - a disease I couldn’t just
deal with on my own. To be sick and have to take care of a sick family and
try to deal with the mounting bills because of the loss of income is the
most draining experience of my life.
My husband began his treatment -- thankfully, his symptoms were not a severe
as mine. He was eager to learn in October, 1996, if he had received the
vaccine or the placebo in the Lyme trials. Still not hearing from them by
December, he finally went in to see the doctor connected with the study.
The doctor would not tell him if he received the vaccine or the placebo, and
said, “If you want to find that out, go get a lawyer.” I was RIPPED!!!
Through our attorney in New York, we did get SKB to admit that I had
received the vaccine, not the placebo (as if I needed anyone to tell me!),
but when information was requested about my husband, SKB wasn’t quite sure
if he had received the vaccine or placebo. Funny how that happens!
I was on oral antibiotics for one year, with some improvement, until March
1997. We then tried IV long-line catheter to my heart for four months,
changing medications once after the first two months. My twelve year old was
also on IV’s for three months at the same time. NOT FUN!! Stress was high
because mommy could do so little. The pain became unbearable, and I was sure
that I would die. I actually wrote a living will.
In July, 1997, I did come close to dying - my liver functions (AST and ALT)
went in to the thousands! The norm is 0-31. I couldn’t eat, sleep or drink
anything without vomiting. My temperature stayed at 103 degrees, give or
take a point or two. I was in constant pain. Every exhale in my breathing
was a moan. Most of the time my body temperature ranged from 94.2 to 97.6
degrees normally. I was often cold in an 87 degree room, bundled with
sweaters and blankets.
One night, I awoke two hours after going to bed with my body shaking
uncontrollably. I couldn’t talk for fear I would bite off my tongue. My
husband scooped up our youngest and managed somehow to get me in the car to
take me to the hospital. We were petrified that I was dying!
This was the second “hospital run” for me. The first was almost as scary,
but my liver functions that first time were only 100 and 81. In five hours
time at the hospital, they did nothing for me other than taking blood. Thank
God for a friend with Lyme who was with us at the hospital. At least she was
supportive and brought me water. I’m sorry to say that she died from Lyme
disease a few months later at the age of 48.
Home I went after the tremors subsided. The pain continued, and I refused
to infuse again. The IV line was pulled. In December, 1997, just before
Christmas, I had to have my gallbladder removed. Through all this, I have
lost over 30 pounds and have endured much pain and suffering. I feel I will
never be as well as I was before being inoculated. Thank goodness the doctor
at B.U. Medical Center was willing to help me and did not deny my symptoms
existed as did the doctors connected with
the SKB vaccine study.
I would love to know just how much money these
doctors were paid to inoculate us.
My major concern is for the thousands of other people who do not know my
situation exists and that there are definite risk factors for anyone
interested in taking the Lyme vaccine, considering there is no serological
test yet available that will show a definitive result as to whether or not a
person has Lyme bacteria in their system.
Please be sure to be well-informed before you make a decision about the Lyme
vaccine. To this day we still do not know with what we were inoculated, or
how much we received.
Thank you for listening.
Sincerely,
Lynn Lane
P.S. In late January, 1998, I received a letter from my attorney stating
that there were fundamental flaws in the pre-trial testimonies of his key
expert witnesses which proved to be fatal to my case. No
more lawyer. So much for compensation. I haven’t been able to work for over
a year because of my involvement in the Lyme vaccine study.
These doctors
and the pharmaceutical companies are going to make millions of dollars on
the vaccine, and I can’t even get a lawyer decent enough to represent me.
Doesn’t anyone believe in right and wrong - or justice - anymore, or is
everything all about money regardless of the consequences of human
suffering? Please wish me well. Legally, I have until March, 1999 to file my
case, but FOREVER I will be scarred for volunteering to participate in this
study.
Lynn Lane
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