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IOWA
Kathy Cuddeback - 1977 - Kathy was first exposed to Lyme disease
while working as an Outdoor Planner and Park Ranger in KY and TN.
She was hospitalized following a tick bite on her right leg and
developed the classic bull's-eye rash and other typical early Lyme
symptoms. But her doctor was not familiar with Lyme and diagnosed
her with Rocky Mountain Spotted Tick Fever. Received 2 weeks of oral
Doxycycline. Felt better, but not great, received another week of
doxy. Had fatigue, no stamina (former marathon runner) low
resistance to viruses, memory and concentration problems,
personality changes, but tried to hide it all. 1982 – First daughter
born, Kathy was on crutches during the last trimester due to leg
numbness and pain. 1986 – Second daughter born, Kathy was ill with
flu-like symptoms during the first and second trimester, weeks at a
time. Right leg pain and numbness, on crutches by 3rd. trimester.
1990 – Third daughter born, right leg pain, numbness again. Severe
fatigue, for 3 months following delivery. 1993 - Symptoms totally
disable her – tremors, unexplained pain, memory loss, fatigue,
inability to walk, heart problems, etc. She saw 5 doctors in 3
months, asking each one what about Lyme disease, each doctor asked
if she had a tick bite and a bull's-eye rash, and she replied yes,
she did in 1977. 1994 - January saw a neurologist in Iowa City
ordered a Lyme test before proceeding with a steroid epidural for
spinal pain relief. The steroid did not help her pain; instead it
allowed the bacteria to get a firm hold in her brain. Rapid heart
beat, speech and memory loss, confusion, inability to remember what
she read all increased. The two Lyme tests were positive, diagnosis
of Lyme disease, IV antibiotic ordered for 2 weeks only. By then she
would be "cured”, said this respected neurologist. This was 13 years
ago. 1994 – February, due to her health condition, she was
terminated from her job as County Naturalist, Environmental
Education Coordinator which she had and loved for 14 years. 1994 –
September saw a Dr. in IN, former co-director of Midwest Lyme
Disease Clinic, made a clinical diagnosis of Lyme with positive
tests, recommended 6 more months of IV antibiotics. 1996 – Saw a
Dr.in MO, ordered 6 more months of IV antibiotics or until symptoms
subsided. 2001 – Saw another Dr. in MO, he supported long-term
antibiotics until symptoms subsided. 2004 – Purchased a frequency or
Rife machine, and soon found out it works too well. Kills the
bacteria by shattering it with an electrical frequency. Problem is
my immune system thinks there are thousands of bacteria when it dies
this way and have a horrible herxheimer. Use it with great respect.
2007 – Local physician continues to treat Kathy with antibiotics.
She has 15 symptoms, mostly neurological, including severe spinal,
neck and leg pain, 4 types of seizures, speech loss, tremors,
migraines, Tourette's, and inability to walk at times. She is
permanently disabled, and her newest symptom, blurred and double
vision is worsening monthly. She helps husband on a farm in SE Iowa,
grows flowers and makes flower arrangements, and also creates
gemstone jewelry for an individuals purposes, and is mother of
congenital Lyme child, and President of the Iowa Lyme Disease
Association.
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Betty Gordon - July 12, 2004, I
was correctly dx with late stage, CHRONIC lyme disease after being
misdx for 34 yrs. after a case of mono, and the list goes on with 30
diagnosis/symptoms! I tested with a blood test, WESTERN BLOT IGM &
IGG, which needs to be tested for ALL 16 protein bands...all strains
of lyme disease! In USA, only 3 diagnostic labs do this testing:
IGeneX, MD, and Bowen Labs. 2004, I was diagnosed with: diabetes 2
in 1-04; chronic lyme disease 7-12-04; and sleep apnea (I stop
breathing when sleeping) and restless leg syndrome 12-04.....3
life-threatening illnesses. "You look perfectly healthy...not sick”
said one of my family members. 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. “It’s all in her head”. Only those of you going through
this know how much pain and anger you’ve caused us with your
thoughtless comment on our “invisible” illnesses! We don’t want
sympathy; we only want your support, compassion, and someone to talk
to when our “flare-ups” are bad. I have been blessed with my
supporter/ husband, Jack, and close friends. I have had chronic
fatigue syndrome, CFS, since age 21, Feb. 1970, after getting
mononucleosis; and still have 34 years later. I was diagnosed with
fibromyalgia syndrome, FMS , 11 years ago but have had at least 30
years. I then began having many other symptoms: A person has fibromyalgia if they have at least 11 of 18 specific tender point
painful sites. I have all 18 of 18 tender points. My pain never goes
away! I use a heating pad and/or frozen cold packs on my neck,
shoulders, lower back, thigh, and knee helping to numb pain. Do you
have any idea what it is like to go to bed night after night, year
after year, and get up just as TIRED as when you went to bed? Plus I
wake up frequently urinating 4-8 times. I can’t reach level 4 sleep
healing our injuries and rejuvenating our systems. I have
sound-proofed our bedroom to eliminate noise from the neighbor’s
driveways, slamming of the car doors, racing engines, dogs barking,
piano playing, and bouncing of all balls. I was clinically diagnosed
with major depression and anxiety, and put on antidepressant that
helped my chemical imbalance causing temper flare-ups, and causing
me to gain 25 lbs, which caused my type 2 diabetes sooner.
Difficulty concentrating or performing simple mental tasks. I now
point at things since I can’t think of words, abdominal pain,
bloating, and alternating constipation/diarrhea (irritable bowel
syndrome) as well as irritable bladder syndrome causing urinary
urgency/frequency; super sensitivity to light (reflections/glare)
and to sound (loud mufflers). Finally after 34 years, I have
discovered it was my LYME disease causing extreme PAIN sensitivity
to lights/glare/reflection and to sounds/noise! I have seen 40-50
drs. to get a correct diagnosis! SS Disability doesn’t acknowledge
LYME/FMS/CFS as work disabilities and fight to DENY each claim
although our treating specialists all state, “patient is unable to
do substantial work now and in the foreseeable future”. July 1,
2005, I was finally approved on my 2nd SSDI claim after 5 years of
hell.
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Thomas Sharpe - I was bitten by a
tick in L.A. county, California, probably picked up while clearing
brush, leaves and debris at my job. I developed a huge bull's-eye
rash, was treated with 4 weeks of doxycycline for Lyme disease. My
symptoms came back, worsened and mulitiplied, constant headaches and
dizziness, stomach problems, periods of disorientation and
confusion, lost 40 pounds. Doctors told me I didn't have lyme
because I'd already been treated for it. They didn't know what it
was. Got so weak and sick I had to move back to Iowa to live with my
retired parents and try to get treatment there. Doctors in Iowa told
me same thing, "Can't be lyme, you've already been treated," but
they couldn't explain my symptoms either. I was diagnosed with:
"Vestibular neuritis, gastroparesis, an "unknown virus -- may just
take some time to clear up." but they couldn't explain my symptoms
or dropping blood counts. Finally went to see a specialist in New
York. Testing showed positive for Lyme, was given a brain scan at
Columbia which showed global hypoperfusion (reduced brain blood
flow) the radiologist judged was similar to pattern seen in
inflammatory disease such as Lyme. The specialist also tested me for
Babesiosis, sending a blood sample to Sonoma County Board of Health.
It came back positive, as well. I am being treated for both diseases
now. I am hoping to get better. I've been sick for 10 months now, so
my Lyme infection is much worse than it could have been if treated
more aggressively earlier, for a longer period of time. I lost my
job and my apartment in Los Angeles. I am overwhelmed with medical
bills and about as broke as I could be. Current testing and
treatment standards are causing patients like me to be overlooked
and misdiagnosed. Something has to be done.
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