Download This is what makes Lyme disease so dangerous. There may be

Chair Gonzales, Vice Chair Huffman, Ranking Member Antonio, and distinguished
members of the House Health and Aging Committee, thank you for the
opportunity to offer proponent testimony on HCR 5 – legislation that, if enacted,
would urge the Centers for Disease Control and Prevention to take action to
improve prevention, diagnosis, and treatment of Lyme disease.
Living on 20 acres has its advantages. Great hunting is one of them. There is
nothing like being in the woods on an autumn day with the wind swaying your
tree stand and the smell of dried leaves in the air. Although I am never going be
confused with being a master buck slayer, I love the thrill of the hunt.
It may have been one of those days over ten years ago that I contracted Lyme
disease (Ld). I don’t recall being bit by a tick and I did not develop a bull’s eye
rash. I may have had flu like symptoms…but that was so long ago, who knows
now. But what I do know is the devastation a poppy seed sized insect has on the
body.
Five years ago after being under a lot of stress, I began to exhibit serious
symptoms that frightened me. First it was chronic bronchitis, then seasonal
bronchial asthma, then full blown asthma, and Pleurisy. No sooner than I was
over being sick, it came back again. A friend with Ld kept telling me that it’s not
normal to be sick like that all the time and she thought I had Lyme. I told her,
“You have Lyme – you think everyone has Lyme”.
I had lived in the cycle of pain and exhaustion for so long that it became my
normal. “Managing the symptoms” did serious damage to my central nervous
system. I had pushed my body too far and created the perfect storm for the
Lyme bacteria to grow.
Other symptoms developed - quickly. Short term memory loss, cerebral ataxia,
muscle weakness, joint pain, air hunger, cramping, fevers, vertigo, blurred vision,
cyst formation in my joints, reactive mono, Hoshimots’s hypothyroidism,
migraines, buzzing sensations in my head, heart palpations – then a seizure.
Maybe my friend was right…. maybe I did have Lyme. I made an appointment
with a LLD, Lyme Literate Doctor in Pennsylvania and was given a clinical diagnosis
of Lyme disease. Extensive blood work came back negative (+). According to the
IDSA, Infectious Diseases Society of America there must be three positive bands
for a positive test. Because I only tested positive for two bands (that are specific
for Ld) my test is considered negative.
I progressively got worse. After six months of antibiotic treatment, a new series
blood work revealed a negative (+) again. But the crazy thing happened. One
band that was previously positive is now negative and the band that was negative
was now positive. My doctor explained it as “Protein Shifting”, a theory
explaining how Borrelia Burgdorferi (bb), the bacteria that causes Lyme, change
its outer membrane from a spirochete, or cork screw to a hook shape or even to a
line to evade the immune system.
After year of treatment I responded well enough to discontinue medication.
Within three months I was worse than before. The bacteria had traveled to my
brain. The oral antibiotics could not pass through the blood brain barrier and the
bacteria found a safe place to thrive. A PICC Line, (peripherally inserted central
catheter) was ordered. One problem….the insurance company would not cover it
without a positive test.
By now my health had declined rapidly and my LLD suggested another test, a
three day urine catch. He said it was a shot in the dark but we had no other
option. I went off medication for three weeks; long enough to trick the bacteria
out of hiding and began medication again. The hope is to get a fresh kill and pass
dead spirochetes in the urine. The test was Positive. After a year of antibiotic
therapy I still had a present Lyme Infection. Unfortunately the insurance company
denied coverage – again - stating the PICC line is experimental without a positive
blood test.
This is what makes Lyme disease so dangerous. There may be hundreds and even
thousands of people out in our community who may have gone to well meaning
doctors, had blood work done that came back negative and they have Ld.
If you or someone you know is chasing symptoms… one day its joint pain on the
right side, then the left, or my vision gets funky, stomach problems then there
are bad headaches….the list goes on, there may be a chance they are a
hypochondriac; or they may have Lyme disease. There are over 100 symptoms of
Ld and no two people are the same.
Lyme disease had been misdiagnosed as Parkinson’s, ALS, MS, Fibromyalgia,
Chronic Fatigue Syndrome, Autism and so on. Lyme disease is easy to get, hard
to diagnose and very difficult to treat. What works for one person may not work
for another. When co-infections are present, it is even harder to manage.
I am passionate about educating people on the risks, prevention and diagnosis of
Lyme disease. One day the Lord laid it on my heart to start a support group for
those of us who struggle with living with Ld. LYME BITES was birthed to give
encouragement, share knowledge about treatments and be that support for
those ailing from the disease. Desperate to help my community I saw how other
states had passed Lyme legislation. Wanting my state to be aware and protected,
I contacted State Representative John Patterson in April of 2013. With his leading,
a law went into effect last September, only to be repealed by the Ohio Medical
Association.
My heart’s desire is that no one has to suffer as I did from years of misdiagnosis.
My family doctor did not know to look for Lyme. If he had, I may have received
treatment early and been spared the ravishing effects of unchecked bacteria
growing in my body for over a decade.
Lyme disease is here, in Ohio. You do not have to live in the country to get bit by a
tick. They travel on birds, squirrels, mice, dogs, cats and insects. Sooner or later
you WILL come in contact with someone with Lyme. Be someone’s hero. Help us
bring the “Lyme” light on Lyme disease.