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NEW HAMPSHIRE
Suzanne Dev
- I actually had a bulls eye rash, a tick we found in bed, and all
the symptoms of fever and flu, and aches and pains. In 1988 I was
mowing our grandmothers lawn, and trimming bushes etc. as a Mothers
day gift. It was later in the summer in June around Fathers Day in
Wilton, CT. That is where I once heard Dr. Jones say was the
epicenter of Lyme. However in 1988 our family lived in NH, we were
back home after a long weekend in Ct., where we found a tick in our
bed walking on my husband. We knew a little about Lyme, and watched
for him to develop symptoms. He never did, but the following weekend
I was feverish, and achy with flu like symptoms, and we laughed and
joked that I was having sympathy pains for him, so he wouldn't have
to get sick. Ha, Ha!! After a few days, I took my 3 month old baby I
was nursing, and my 4 year old to the Pool in town. A woman came
over to me and asked if I knew I had this big red round rash on my
back. She was alarmed because she said it looked like Herpes. So, I
made an appt with our HMO doc, and by the time I got in to see him,
the rash was fading. Anyway, he told me, It couldn't be Lyme rash
because it wasn't perfectly round, it was more oval. But he agreed
to have my blood tested, He gave me a prescription for tetracycline,
but asked me to wait for the results. He told me I would have to
stop nursing in order to take it, because it would harm my infants
teeth that were developing. So, naturally, I waited, it came back
negative and I went on my merry way. Now I know that I passed it all
on to my baby while nursing her. It explains the last 20 years of
both of us being sick with something or other. My relatives were
mailing me photos, and articles from CT, to watch out for in case my
husband developed symptoms, and I was written off as not infected.
As time went on I started developing intense muscle pain whenever I
did any exercise. I had played soccer with a small group, for years,
up to the age of 30. I was a competitive swimmer growing up, I
played sports. He started reading my chart and listened to me ramble
on about all the various ailments I had at the time. He checked my
reflexes, felt my neck, I had a swollen lymph gland. Looked at my
feet, elbow etc...Oh I had also had fallen and hit my head earlier.
He just looked up and simply asked me if I had ever been by a tick.
Simple as that. yes, I said, many times probably, but yes I had had
the bulls eye like rash. I explained that it was 15 years earlier in
1988, and that I didn't test positive, so surely that could not be
the issue. He tested me again, and they too tested negative. He
explained that having had the rash was the simplest way to diagnose
the illness and actually one of the only ways to know for sure that
you have been infected. He explained the two standards of care etc.
and sent out more labs to IGeneX. Not CDC positive but a few
specific ++ bands. I still think I wasn't sure of all this, and he
was just learning about it himself. But I immediately stopped and
tapered off several of the bipolar meds, and started on antibiotics.
He didn't tell me I would feel worse before better, I had fevers,
sweats, chills, random symptoms, but I continued until I was
remarkably improved 6 months later. I realized much of the stiffness
in my fingers had disappeared. My feet didn't hurt when I got up in
the morning, my headaches were no longer a daily event. I added new
meds this time two at once-Biaxin and Plaquenil and 3 months later I
could read better, think clearer, and was generally less moody. Now
I was able to absorb some of the lingo I had been collecting and
hearing and reading, and I was mad as hell, I had resentment toward
everyone, and my self esteem was still low because I still looked
healthy, was losing weight, smiling a bit more. When people
commented on my weight loss, especially my relatives who had dissed
me all those years and still were, I would answer: nothing like
chemotherapy to really make you feel like eating.
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Laura Turner
- I was diagnosed with juvenile rheumatoid arthritis when I was 3
years old. My parents said sometimes my legs were too tired so my
Dad would carry me. After 42 years of every diagnosis under the sun
(like everyone else) I FINALLY found out I had Lyme 8 months ago. I
started treatment and had herx pretty bad each time my doctor
changed or increased the antibiotics. Thankfully I am on neurotin
for pain and lexapro for my mood. If you had told me 20 years ago
that I would have to live through the treatment process, I would
have never believed you. Either I’m a zombie or have inner strength
beyond my belief. The exhaustion is unreal and the pain is horrible
at the worst of times. They say Lyme is not fatal, but there are
days it feels it will take you away against your will. I am so
fortunate to have the most loving and understanding fiancé. If it
wasn’t for him, I would be lost.
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