Lyme disease diagnosed after 34 years
From: JWissmille (jwissmille_at_aol.com)
Date: 08/29/04
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Date: 29 Aug 2004 01:06:08 GMT
http://www.zwire.com/site/news.cfm?BRD=2035&dept_id=490351&newsid=12640925
&PAG=461&rfi=9
Lyme disease diagnosed after 34 years
By: Jayne Bullock, Staff Writer August 07, 2004
On Monday, July 12, Betty Gordon of Ames was officially diagnosed with
late-stage Lyme disease.
"I was shocked, but relieved to know," she said. "Finally after
34-plus years, I had a correct diagnosis. A new chapter has opened up in my
life. I need every bit of strength, energy and endurance to educate myself
to again pull me through this one, especially since in January 2004 I was
diagnosed with Type 2 diabetes."
Gordon said she has been fighting for years to have the Lyme
diagnosis, but unless a definite rash is noted, the tests are far from
accurate. She has been diagnosed with chronic fatigue syndrome since age 21.
She was also diagnosed with fibromyalgia syndrome 11 years ago, but the
symptoms go back at least 30 years.
Like many people with Lyme disease, she has had a variety of
symptoms that have been misdiagnosed over the years.
The disease causes problems with the immune system and it attacks the
brain, lungs, heart and kidneys. It mimics many other illnesses which are
hard to detect - fibromyalgia, chronic fatigue, Bell's palsy, multiple
sclerosis and Parkinson's disease. In Gordon's case, she also suffers from
sensitivity to light and noise.
"I saw an article (in the paper) ... there was going to be a
speaker talking about fibromyalgia pain, chronic fatigue, MS, etc., etc,"
she said. "So I went to hear Dr. Scott Taylor and I didn't even know it was
a Lyme meeting until I got there."
Gordon said the symptoms he was describing fit her own special
problems.
"I kept saying, 'I got this, I got this, I got this,'" she said.
"The thing that puzzled and astounded me was that Lyme patients have tender
pressure points. There are 18 in the body. Mine are 18 of 18. I started
listening very intently."
As the result of that and other meetings, Gordon eventually heard
about a new test that is currently only being used in California called the
western blot tests, IGG and IGM.
"So I went to my doctor who has treated me for all this mess and he
sent me to specialists," she said. "I've probably seen 40 doctors to finally
get this diagnosis two weeks ago of late-stage Lyme disease."
It has been a long, uphill road for Gordon to learn about Lyme disease
and how it affected her. At age 21 she had mononucleosis and never
recovered. She said she is not an outdoor person, although she grew up on a
farm and enjoyed being around horses.
"I kept getting more and more symptoms," she said. "I even had rashes,
but never saw a tick bite. I had three skin biopsies done at Mayo Clinic,
which came back 'negative, unknown bug bite.' Things progressed."
She said her friends and family question her health.
"You look perfectly healthy - not sick,'" they say. "Oh what
they don't know and can not feel of the pain and fatigue inside me. If I
were in a wheelchair, used crutches, a walker, or a cane, I would have a
visible disability impairment. As our illness progresses, we use the aids I
mentioned."
She said some say it is all in her head.
"Only those of you going through what we fibro folks have will
know how much pain and anger you cause us with your thoughtless comment on
our 'invisible' illness," Gordon said. "We don't want sympathy; we only want
your support, compassion and someone to talk to when our flare-ups are
really bad. I have been blessed with my full-time supporter, my husband
Jack, and other close and online friends."
One problem Gordon has been pursuing is social security disability.
She has been denied benefits and is currently in litigation.
"I left my job after 30 years as a secretary at the D.O.T. because the
pain was getting so bad, I couldn't even sit down," she said. "I was only
49, not eligible for retirement, and at the same time my younger sister was
dying of breast cancer. I couldn't go through another death and this, too,
so I quit. Then I filed for social security disability. I've been in that
route for four years."
Gordon is hopeful the new diagnosis will be successful in two ways.
"Now that I have a new and correct diagnosis, I'm working with Iowa
Senator Tom Harkin's Des Moines office to see if he can expedite my first
(social security) claim in Maryland's appeals council office, buried there
for two years."
As for the disease itself, it can be treated, but she will never be
cured because it is in its late stage. An antibiotic program called the
Marshall protocol will be used.
"Going through this medication program is like going through
chemo, so that's what I've got to look forward to for three months starting
Aug. 9," she said.
Gordon said she had the new western blot test done because she is
having signs of early onset Alzheimer's disease,
"I wanted to rule this one out - I am fighting for my life," she said.
ŠAmes Tribune 2004
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