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OHIO
Pam Conley - “the day … the
hour” -- The words come from Denise Lang’s book on coping with Lyme,
but they ring so true. I can remember the very hour that spelled the
end of my good health, maybe forever. I had taken my dog for a walk
that morning before work, going around our rented property as usual
not thinking anything about grass that hadn’t been mowed in a couple
weeks. After all, you don’t get all of 6 acres mowed every week. It
had to have been that morning that I’d pick up a hitchhiker. Four
hours later, just 20 minutes before then end of 3rd period in school
(she is a teacher), I thought I felt something lightly poking my
leg. Weird, I thought, how would I have picked up a splinter on my
pants? It was high in the inside of my thigh – and kept up an itchy
presence. Since I was standing in front of twenty some 9th graders,
I couldn’t do anything but, boy, as soon as they left, I rubbed at
the spot and headed for the teacher’s lounge restroom. Nothing was
there to see except a little reddening from my vigorous rub. Since
there was no little sliver of wood, I just assumed I’d been bitten
by an adventurous spider. And when a rash showed up 3 days later, I
didn’t worry because I’d had allergic reactions to spider bites
before. But again, weird that it didn’t show up immediately. Weirder
still that the rash didn’t itch much and continued to grow. It grew
into an oval about 8 x 4 inches, the inner area lightening as the
edges spread. It finally faded after about 3 weeks. I showed my
husband, Rick, a few times just because I thought it so strange. I
wasn’t worried and never even considered going to a doctor. I don’t
remember the date of that day in September 2003 but I’ll never
forget the day. In October, I called in two different times with
what I thought was the flu. I slowly was changing; feeling tired all
the time, falling asleep constantly. Of course I was tired – I was
in my second year of teaching five different classes and taking two
courses for alternative certification myself. I did the same thing
last year. We’d also just moved into a new house. I just didn’t
notice how quickly I was slipping – poor preparation for classes,
falling asleep at my desk, at the dinner table, driving. I felt like
crying or throwing things. And my spider bite was infected. I
self-treated with gently expressing the small amounts of pus,
cleaning with peroxide and using antibiotic cream. Doctor? No way
for a little infected spider bite. By the second week in November I
was totally non-functioning. I went to my family practitioner on
November 13th and complained of extreme fatigue. I never returned to
work. And, ruled by ignorance and pride, I never mentioned my still
infected spider bite. I was now starting to have other symptoms. I
hardly had energy to walk my dog, Squirt, but I still tried to go to
the end of the block and back. Only now I was having pain. My
Achilles tendons made walking at all difficult. The day after my
doctor’s appointment, my ribs felt like I had been worked over with
a ball bat. I only made it down past two houses and had to make
Squirt turn around. If there’d been somewhere to sit, I would have
and waited for Rick to come find me. I wanted to cry. I slowly
worked my way back and collapsed. I was also starting to have what I
now know is myoclonus. My legs, sometimes my arms, and sometimes my
whole body was twitching and jerking in violent spasms. This
especially happened when I sat on the couch or lay down in the bed.
Any sudden change in light or sound would set it off. Having the TV
on was almost painful. On November 17, I went to the appointment
with a sleep clinic set up by my doctor. While waiting in the
reception room, my legs were twitching about every five or six
seconds. They continued to twitch while I talked to the doctor, I
mentioned it and he just looked at them for a minute. I have a
history of periodic limb movement disorder (PLMD) and he seemed to
think I was starting to have them in the daytime. His biggest
concern was that I was developing narcolepsy. On December 1, I had
an overnight sleep study. Still had PLMD, no sleep apnea or
narcolepsy seen that would explain the “extreme daytime sleepiness”.
They made an appointment for me with a neurologist. By the time of
my appointment, I was starting to have hallucinations and an even
harder time of staying awake. I had little or no ability to
concentrate. The neurologist thought I still might have undetected
narcolepsy. He scheduled me for another sleep study to include a
multiple sleep latency test (MSLT). I had that overnight on December
16th. By now, I had been given a variety of drugs to try to control
the PLMD and keep me awake during the day. Some had some unpleasant
side effects and seemed to increase the hallucinations while doing
little to keep me alert. The MSLT showed no narcolepsy and I was
scheduled for an EEG for after the holidays. Meanwhile, my spider
bite was still infected and I still didn’t mention it to any doctor.
On Christmas day, I again took the top off the sore and noticed a
tiny black speck. AH-HA! Perhaps it had been a splinter all along.
(I still wasn’t thinking all that clearly). I heated a needle in a
match-flame, steadied myself then removed the poppy seed sized speck
and examined it. It appeared to have whiskers – or tiny legs. I
shrugged and threw it away. Within a few days, the infection at that
site cleared up. During the EEG, the technician asked me about my
twitching. Said it was happening all the time, especially when I
relaxed. He said, strange because nothing was showing up on the EEG.
More than a month later, on February 9th, I finally had another
appointment with the neurologist. He said two things: 1) there’s
nothing wrong with you and 2) you can try taking Ritalin. Ritalin
was not only expensive, it was not covered by my insurance without
prior authorization. Of course, he doesn’t do prior authorizations –
too busy. February 12th, I was back at the sleep clinic for another
follow-up. They don’t prescribe Ritalin for adults so he refered me
to a psychiatrist. On February 18th, I did an exhaustive intake
interview at the psych’s office with a social worker. I had driven
myself even though I was afraid too because my husband had to work –
and pride. On March 1, I drove myself to my PCP’s for a follow-up
with him. Still no clue as to what was happening to me. Afterward, I
couldn’t remember how to get home even though it was an easy route.
I drove around in an almost panic until something looked familiar.
Two days later, I’m back at the psychiatrist. He suggested that I
might have fibromyalgia. He also gave me some meds to try – samples
of Ritalin. He sent in a prior authorization form so my insurance
would pay. The next day I found out that it has been refused. They
won’t pay for Ritalin for adults. That was ok because I had tried
the samples. Not only did Ritalin leave me jittery, extra
sound-sensitive and with worse myoclonus, it made me unable to fall
asleep when I was so very exhausted. Next day, I was back to the
sleep clinic where I mention fibromyalgia. He suggested following up
on that since they can’t do anything for me. (Huh? Why did you have
me come back?) Two weeks later, on March 12th, I was back yet again
at my PCP’s. I relayed the suggestion that I might have fibromyalgia.
He did a cursory exam, found some seriously painful “tender points”
and said he thinks he agrees. BUT, he doesn’t treat fibro. He
refered me to another family practice MD with a “special
interest/expertise”. The earliest appointment I could get is April
13th. Hallelujah! He confirmed that I have fibromyalgia. Finally I
was getting somewhere after seven months, if you started with
October when I first had symptoms. Then – he suggested something
else. I might have Lyme disease. What? What exactly was that? He
explained that it’s a tick-borne illness that mimics other diseases
including fibro. He strongly suggested that I send blood to IGeneX
for testing – for only $175, not covered by insurance. AND, the test
can come back negative and you still have Lyme. I tell him that I
have to talk to my husband. That’s a lot of money especially since I
hadn’t been able to work since November. I went home and we decided
to not get the test done since it is both expensive and not
completely dependable. Curious and desperate, I took a few lucid
moments here and there to search the internet. I found lots of
information, lots of confusion and pictures of MY (or just like my)
bulls-eye rash! I wasn’t together enough to really think about it
much. I didn’t even show Rick at that point. On my next visit to the
pysch, April 21st, I told him that I think I might have Lyme. He
immediately tells me that’s not possible, “We don’t have Lyme in
Louisiana”, here’s some Neurontin for your neuoropathic pain. That
was the last time I saw him. I later found out when I was filing for
SSDI that he diagnosed me with depression – nothing else. Of course
I was depressed! I was totally worn out, had no short-term or
long-term memory, couldn’t follow a conversation or read or watch
TV. My body was wracked with pain and jerking like a puppet, and I
couldn’t stand any kind of light or sound. Something horrible was
screwing up my life and I didn’t quite know what. I felt like I was
getting passed around and no one knew what they were doing.
The one guy who was the closest said that I might have Lyme - that
was causing fibro - but you couldn’t really prove it. ARGH!!!! Well,
I did more research and I went back to the fibro/Lyme guy. On May
10th I sent my blood winging to IGeneX. The test came back with some
positive bands but not the ones counted by the CDC. I took in
pictures from the net that closest resembled my rash and told him
about what I now knew was a tick bite. I got a clinical diagnosis of
Lyme. Like millions of others with Lyme, I’m not included in any
official stats. On June 18th, 2004, I started my first treatment,
doxycycline.
* * * * * * * *
Shelli Gentry - We live in
Franklin Ohio, my better half has been sick going on 18 months. He
woke last July with double and blurry vision. We have been to 8
different doctors all saying you have had mini strokes that have
affected your vision it will correct itself in time. It has not he
has gotten worse and has almost all the nuero sypmtoms of lyme. We
thought and thought and remembered he had what appeared to be a
bulleye ring last spring that we thought was ring worm since looking
on the internet I have found that it was bulleye ring the small red
dot in center is still on Rod's leg. He went from working 12-14
hours a day to almost no functioning at all on certain days. We need
help with this as he has been off work the whole time and has been
denied long term disability through his employer and SSI because of
no significant diagnostic testing that is positive.
* * * * * * * *
Diana Houston - More than 4
years ago, I was hiking on the Florida Trail, in the Ocala National
Forest. I never gave ticks a thought. When returning home to Ohio, I
felt ill. I assumed it was the flu. Fever, ached all over, swollen
glands, fatigue. It really slammed me. I saw the Dr and was treated
for flu with anti-virals. No better. The "flu" went on and on and I
grew weaker all the time. My Dr did blood work, but not for Lyme. I
was anemic and my thyroid was messed up. New meds were started.
Anemia continued and thyroid levels fluctuated, too high-too low.
Seemed like mono but it wasn't in the lab work. Soon, bloodwork
showed problems. The numbers were increasing, resulting to a
referral with a Hemotologist/Oncologist. My labs returned
"inconclusive" for leukemia. I still have yearly checkups for this.
The "odd flu thing" kept coming and going. I changed Dr's and became
very ill with a mono-type thing. I was vomiting, weak, my glands
painfully swollen. Dr. diagnosed Cytomegolo Virus, which usually
affects you if you have an impaired immune system. We searched for
that reason. Bone marrow tests -- I was getting sicker all the time
with new symptoms. I was doing my own research and kept coming up
with Lyme, backtracking to the last time I was healthy...the Florida
Trail. By now there were so many Dr's and way too many tests. I
began having trouble with my eyes and the Opthalmologist diagnosed
me with an MS-type problem. To the Neurologist I went, and more
tests. I had plaques on my brain, my brainwaves were too slow and
there was a problem between my right eye and brain. I was diagnosed
White Matter Disease, possibly, MS. But I had a lot of non-MS
symptoms. I told my prominent Neuro I would like to be tested for
Lyme but he laughed at me! I was told if giving me a test for Lyme
would mollify me, he would do it, but only to reassure me of what he
already knew. (Idiot). I am so thankful my family physician did not
treat me that way. He listened, then gave me excellent advice. I was
told that the labs here are not what the "Lyme Literate" Dr's would
use and that it would be in my best interest to travel to see one of
these specialists. If I came back with a diagnosis of Lyme, he would
happily work hand-in-hand with the other Dr. And so it was. I
returned to the Neurologist who scoffed at me and told him I had a
firm diagnosis of Lyme. He asked if I had the Dr's business card.
"Yes, but why?", I asked. He replied, "I want to see what a snake
oil salesman puts on his business card." He asked how many odd
things were sold to me. "None," I replied. I was so angry and did
not hide it. I told him I would not be back. I have been through the
cycles of this illness and each time it takes me by surprise. I have
been through stuttering, visual problems, photophobia, weakness,
extreme fatigue, word association problems, forgetfulness, rage,
hallucination (once, but that was enough), some loss of hearing, odd
"aromas", brain fog, feelings of being "disassociated", crying jags,
confusion, feeling lost, fibromyalgia, arthritis, spleen pain,
vomiting, numbness, bone degeneration, headaches, extreme neck and
back pain, emotional problems, Bells Palsy, drenching sweats, reflex
loss, transient dyslexia, dizziness, light sensitivity, sleep
disorders, depression, rashes, irregular heartbeat, vasculitis, CMV,
anemia, joint and muscle pain, fevers, repeated infections,
stammering, clumsiness, word/spelling/number reversal. I tell you
this because it helped me to know that there were others with Lyme
and that I was not on an island. I need people to understand and I
know that the general idea is Lyme is easily cured with a few weeks
of antibiotic. What most people don't understand, is that the
difference between early and disseminated Lyme, is like the
difference between early and late Cancer. A whole different
ballgame. I talk about it to bring the facts to the forefront. Lyme
is under-diagnosed and under-reported. Some states claim it is not
there, but that is not true. I will keep talking about until people
understand that it is real and it is lurking, possibly, in your own
backyard.
* * * * * * * *
Shirley Metro -
I have had three different Lyme
disease infections. The first bout took place in 1991. A tick fell
off of a cat onto my bed. I didn't notice the tick on me and it was
there quite awhile before I knew it. I went to the doctor--- in
eastern Ohio, and he said, "Gotta think about Lyme Disease ", and
gave me a 10 day course of erythromycin--which did nothing. I
started getting other symptoms--lack of sensation, dizziness;
altered taste and smell, and kept going back to the doctors for
antibiotics to knock out the Lyme I supposedly had. It took 8 months
and several visits to an out of state doctor--- then two years on
the initial combo therapy the out of state doc gave me to really
kill the infection. By the way, the vector in this instance was a
dog tick. Fast forward to 1996. It was autumn---I was at my friend's
house and their Australian Shepherd nuzzled me. I immediately
thought of ticks. I asked my friend to look and he didn't see any on
me. I saw a black spot on the side of my neck and scraped it off. I
didn't see any blood-so I thought it wasn't a tick. I started
feeling funny- went to the doctor's and didn't emphasize Lyme", so
she didn't know to prescribe anything for me because I really had
vague symptoms. I went back a week later, and did my Lyme speech and
got two weeks worth of something. Even by then the Lyme had
disseminated quickly-- fluorescent lights just slayed me; I lost my
taste and smell. The lack of sensation thing was back, too, in
addition to other things. I went through orals and IVs, and was out
of commission for two years-- but in 1998, I got kidney infection
and went to a walk in clinic and they put me on a very common and
inexpensive antibiotic and that cleared the Lyme. Of course, I would
relapse every year in the spring. I recently discovered that there
is a cyst form of the bacteria, which causes relapses in the spring
or fall. So, I would simply take this antibiotic for a certain
period of time and be perfectly fine. If it only could have stayed
that way. May, 2008. My mother still has her farm in eastern Ohio.
and we go there about once a month. I don't think I would have gone
there this year if I knew in May what I know now. Our neighbor told
us that he has picked over 100 ticks off him (they were not
attached) from May- July of this year. He had 30 crawling on him
even though he had done all the precautions--spraying himself;
putting pants cuffs in socks---etc.
In May, I took one of my cats down to the farm with us. I never
usually took any of them from May-October because of what I called
"high tick season", and the experience I had in 1991. I did not
check the cat when I loaded him into the carrier or when I got him
home and I firmly believe that he dropped several ticks on my bed. I
was driving up the road and I thought I felt something on my head. I
did not really investigate it well, but I felt like a tick. Then I
forgot about it and didn't get the tick off. I don't know what
happened to it. A few days later, I came down with flu like
symptoms---sore throat; headache; muscle soreness; dizziness. It was
weird. Three days late I lost my voice totally, but felt fine. I was
thinking Lyme but I didn't call the doctor. A couple of weeks
later, I figured it out, and headed up to the doctor who treated me
so long ago. Of course, the Lyme was already disseminated. I am
beating myself up for not doing the prudent thing because I don't
know what the prognosis will be. My symptoms include: light
sensitivity; no taste or smell; lack of sensation; anorexia-like
symptoms; swallowing difficulties; weakness; dimness of vision;
inability to do checkbook; read newspaper; write letters; difficulty
with driving ,among others. I was on some type of antibiotic from
day 10 after the infection; so I am hoping things will get better.
One antibiotic made me so ill that I ended up in ER; they called the
treating doctor and he advised I stay on the antibiotic. As I write
this, I am into day 13 of this antibiotic. I understand the
frustration of those who are seeking a diagnosis, and those of us
who just want to get better.
* * * * * * * *
Jan Page - I have been sick for about 12 years. I
went to many doctors. One said I think you have MS but all your
tests are negative. I was told I have Bells Palsy, Neurocardiogenic
Syncope (low blood pressure), Pheriphial Neuropathy (feet, legs,
back, hands and arms). Also Arnold Chiari malformation (hind brain
compression of 3mm), diverticulosis, myofacial pain, migraines,
daily headaches, extreme fatigue, fibromyalgia, arthritis, whole
body pain, premature heart beats. I got in a car wreck and hurt L4&5
and got whiplash at the age of 19, now I have degenerative disk
disease. Swollen legs that are constantly red. I was at the county
fair and one night I broke out in a rash covering my body, even my
lips started to swell. I went to the hospital and they gave me three
shots and it cleared up except for my legs that stayed red for
almost a year. I have been told it looks like RSD. I have seen
doctors for 12 years for these symptoms and they always say "I
cannot find out why." A year ago I went to a new pain clinic and got
a wonderful doctor. He did a nerve conduction test and said "you
must have a pinched nerve in your neck you have dead nerves in your
hands." I told him my feet are much worse, and have been for around
9 years. He reviewed an MRI I had then returned and said no to the
pinched nerve. He said "something is really wrong here and I am
going to order some tests to find out why you are in so much pain."
He did blood work and I am thankful he was not afraid to diagnose
what was wrong. Finally I got a call from the nurse who said I had
Lyme disease. I cried and thought I was going to die but felt relief
that someone found an answer to this insanity. I thought I was
crazy, I just couldn't have all these things wrong with me, and I
also wondered why me. My illness had a name-lyme. It felt wonderful
to know what to do. I was sent to a specialist and they put me on
abx for 1 month but I was sick for three weeks. Then I began to get
better but then relapsed. The doctor repeated my doses and the same
thing happened again. I found another specialist who said the other
doctor followed her protocol and sent me on my way. Now I am left to
suffer I guess, when I could be treated and get better. I have a
wonderful pain management doctor but no one wants to treat my Lyme's
aggressively. I guess they don't think there is any Lyme in Ohio so
why study it? To them I am but one person and not worth the time. I
have often wondered if there were more people would the doctors
start to care?
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