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NORTH CAROLINA
Debbie Applegate - I have
struggled with health issues including diagnoses of chronic fatigue,
fibromyalgia and Meniere's Syndrome along with cognitive dysfunction
and much more for many years. I really went into decline after my
second child was born. I could not function as a normal person
anymore. For years, I went to specialists in North Carolina and even
down to Florida. Nothing seemed to help very much even when I sought
help with alternative medicine after giving up on years of
allopathic meds that were prescribed in an effort to relieve pain
and help with sleep. Finally, about a year and a half ago, someone
in a fibromyalgia support group recommended that I should seek help
from a doctor who had helped them improve tremendously. This doctor
was an infectious disease specialist in another state. One of the
tests she ran was for Lyme disease. I came back a resounding and
undeniable positive for Lyme disease by any scale. I started on oral
antibiotic treatment and have had my first real relief and even some
actual improvement for the first time in many years. My children who
also had health issues from birth were tested and my second child
was put on treatment as well. I apparently passed the Lyme to her in
utero. She is 10 now. I thank God for this doctor who diagnosed me
and my child. I am a living, breathing testimony that Lyme disease
is real in North Carolina. We need more doctors who will open their
minds and educate themselves about Lyme disease. I am also proof of
how long a person can suffer and sit in countless doctor's offices
and go without a proper diagnosis. If this had been caught earlier,
my chances of recovery would have been greatly improved. After this
many years of no correct diagnosis and a late treatment, my chances
of being able to eradicate it are not nearly as good as they would
have been if it had been caught earlier. Many late diagnosis
patients like myself will have to have treatment the rest of their
lives to keep this bacterium at bay.
* * * * * * * * Wendy Harrell - In 2001, I
moved to North Carolina to be able to hike and camp and mountain
bike in the mountains like I had in the summers as a child. I was
outside every chance I got, always active. When I couldn’t get out
in the forests, I was at the Y taking spinning classes so I could
ride my bike on more strenuous mountain trails. I practiced yoga 2-3
nights a week. I remember having many ticks on me over time, but
never a bite or one attached. On April 1, 2003, I fell off of my
bike and had pain and swelling in my ankle. The next day I woke up
screaming with pain in my left shoulder. Later that day the pain
migrated to my right shoulder. Over the next several months, I had
pain in my hands frequently at night which woke me up. I slept
poorly when I did sleep. I was exhausted. I gained weight and
couldn’t exercise. I woke up with pain in my right knee. I was sent
to the ER for x-rays-no break. At times my wrists were so swollen, I
couldn’t bend them. I woke up one night and was unable to walk due
to pain in my right hip. I went to my family doctor the next day. I
had a rash on my hip, extreme fatigue, insomnia, joint pain, low
grade fevers, difficulty concentrating, back pain, sore throat,
chronic cough, metallic taste. It was suggested that I seek
psychiatric help, I was told I was extremely anxious, I was given
anti-inflammatory drugs, and at my insistence referred to a
rheumatologist. I was diagnosed with polymyalgia rheumatica and
given a variety of medications. The joint pains worsened and became
incapacitating. I developed Reynaud’s Syndrome and lost feeling in
my fingers and feet some of the time. I was always cold. My fatigue
worsened. I slept little. I found a doctor near home who would treat
me with antibiotics. I was put on IVs for 10 days and given
supplements and dietary changes. I took oral antibiotics as well. My
eyes were bothered by light and I was seeing floaters. I was
forgetful, confused and had a hard time working. My doctor suggested
a western blot to test for lyme. He ran the test through Quest labs
and it came back with several bands positive. I decided I should see
a “Lyme Literate” doctor. I administered twice daily IV antibiotics
at home for the 28 days that my insurance would pay. I improved by
the end of the 28 days of IV treatment; I thought that I should have
done more, but couldn’t afford to. I think and hope that the brain
fog, memory and vision problems have resolved. I continued to have
joint pain and have since been put on a TNF blocker to stop the
joint erosion that has occurred. I now have very little joint pain
unless I forget to take the meds. I am always wondering what I would
be like if that first doctor almost three years ago had diagnosed
lyme or at least looked at the rash on my hip and suggested a test.
Would I have “Chronic Lyme” today?
* * * * * * * *
Jesse Hughes - Long story short,
it took 15 years to find a doctor who knew what was wrong with me.
So now I have chronic Lyme. Permanently disabled from too much nerve
damage and cognitive symptoms. I've been sick since my mid-20's.
Been to many doctors over the years who ran every test they could
dream of just to get an "I just don't know" from them. I struggled
with being able to function good enough to work, drive, etc. Some
doctors said I was crazy, tried to put me on anti-depression drugs
because they didn't believe me. I would refuse and leave that doctor
forever. Finally got a clinical diagnosis for Chronic Lyme last year
(age 41). My doctor was run out of the state by the stupid state
medical board. I'm still receiving IV antibiotics. I can't safely
drive, and have lost my job and insurance (which wasn't helping
anyway). I know I have nerve damage and who knows what else. I am
disabled and don't know if that will ever change.
* * * * * * * *
Charlene Humble
- I am a 49 year old with this disease and I have already lost my
husband to it and it still took me 5 years to get a doctor to help
me. God Bless the doctors who will help us even in the face of the
stupid CDC of N.C. We need help with insurance and really some
understanding also would be nice. Love to all those in need and I
pray for us all.
* * * * * * * *
Karen Lilly - My illness began
with an outbreak of hives. They covered me from head to toe. I went
to my DR who placed me on steroids but the rash persisted. I saw
dermatologist, allergist, immunologist and with each visit I came
out with a different med and cause. I began feeling fatigued and
achy. My joints were swelling and I had trouble walking. This went
on for about 14 months and many Dr visits. One morning I woke up
with an intense headache. I looked over at my clock and could not
see it. I sat up and realized I could see out of my right eye but
nothing out of my left. Next a referral to an opthalmologist.
neurologist and an MRI. The diagnosis optic neuritis suspected MS
due to lesions on the brain. I had a spinal tap. Three weeks passed
with no word on my results and the headaches continued to rage. I
soon found I was losing use of the right side of my body. I was
terrified. One night the headaches became so intense I went back to
the hospital. Another spinal tap showed an increase in my cerebral
pressure. The ED doctor happen to look up my last spinal tap results
and found that for the past three weeks I had been suffering from
meningitis. I called my neurologist who then referred me to an
infectious disease Dr. in my area who is also Lyme Literate. I
tested + for Lyme and began IV therapy. Three PICC lines, insurance
battles and 3-1/2 years later I still suffer the affects of Lyme but
I feel I am on the road to recovery. I am no longer in a wheelchair.
I CAN WALK. My memory is still foggy but far better than before. For
those of you who are still in the midst of treatment and herxing...stay
the course. There is a light at the end of the tunnel and you will
get better. I may never function at the level I did prior to the
illness but I have hope thanks to my Lyme Dr and the Lord.
* * * * * * * *
Terri Holtzclaw-Reiser - I
contracted what I know now is Lyme in the early 80's near
Greenville, NC. I went through the first medical trip I have ever
been on. Zillions of tests...flunked ONE, the visual pattern test
used for MS. The neuro didn't tell me he suspected MS, and that's
good as I may have given up at that point. He just told me something
was wrong. I plowed on for another 15 years or so, got my graduate
degree, teaching certificate and went to Germany for 4 years to
teach (where I picked up the European strain!!) I had to resign my
great job due to medical reasons, constant respiratory infections,
walking pneumonia, chronic coughing, panic attacks that disabled me
(literally) and an inability to handle any type of work-even a phone
call. When I came home to the US with my then-husband, I got
pregnant. I felt awful all through the pregnancy and my daughter
nearly died at birth. She is and always has been the picture of
health. She has congenital Lyme. I continued to go down hill, felt
it was all stress, got dx with CFIDS, FM, Sinus disease, etc. All
the while being tested (Elisa) and (local labs W Blot.)..six
negatives. Finally my md put me on antibiotics for 8 months. I felt
much better and could do daily chores, narcolepsy and balance were
better. When I came off the meds, I crashed hard, had
hallucinations, and he immediately put me back on meds and sent me
to the LLMD in MA. I lived on Cape Cod at the time. He tested me
thru BBI--I had 11 bands...I got well for a while but had to go on
to another LLMD who would check me for the coinfections thru IGenix,
MDL and Bowen, showed all coinfections present. Babesia was bringing
me to the verge of Parkinson's and again deep fear, but IV and oral
and IM antibiotics got me well. That took three years non-stop of
meds. Then I got on a good maintenance program and decided to move
back home to NC, as we had seen an LLMD down here who said he would
continue to treat me and my daughter. Well, that did not happen. It
was horrid. Sad but more common place story here, all my hopes and
health. There is hope, you can get better, but you have to find a
relentless and courageous doc, I credit my life to Dr. B and now to
one of his cohorts. Never give up. My current maintenance is 4 days
IV, weekly IM shot, daily oral antibiotic, and vitamin IV, oral
supplements. Stress reduction, faith, hope, and contact with other
Lymies...and boards like this where people tell it like it is.
* * * * * * * *
J Rogers - I have been sick most of my
life, my parents took me to several doctors and found nothing. I
worked about 20 years after getting my BS which took five years. I
was lucky that I got the degree. It was a hard through school and
working, but the pain and lack of endurance caused me to stop work.
I worked 5 to 10 years past what I should and put myself through a
lot of pain. I was in my 40's before finding out I had Lyme. Both of
my parents have had a western Blot and and would be considered
positive by the CDC but they need one ore band on the IgG and IgM.
The weak bands that they have are enough to tell me that they are
positive or at least need more testing. They do not want to do
additional testing now. They both have some signs of Lyme and have
been diagnosed with other illness. I would not wish this on anyone.
Not working has improved my quality of life, but if I do too much
the pain returns to levels as it was while I was working. My doctor
could not control the pain and I still work. Three pain meds
combined were not enough. I wish everyone a much better life than I
have had, it is better now but not where it should be.
* * * * * * * *
Anonymous - I am
37. I have had lyme 6 years. It took doctors 2 years to diagnose me
correctly although I diagnosed myself on google.com the first day I
got sick. My life has changed forever. I had to quit my job and am
supported by my partner. Managing this disease is all-consuming and
costly.
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M Singleton - In July of 2004 I
came home from visiting my family in Ohio and discovered a
quarter-sized raised red spot on my leg. Within 3 days the spot
spread and grew to approximately 8 inches. I seriously doubted I had
Lyme but since I wasn't sure when I would be able to get an
appointment with the family physician I took a photo of the rash in
case it disappeared before I could see the doctor. The day I saw the
doctor he gave me a prescription but told me not to take any
medication until I had symptoms. Within 2 weeks I had a dry cough
and was feeling sick in a way I couldn't describe. When the
medication was gone I started to feel sick again. My list of
symptoms grew but the blood tests were negative and the doctor only
reluctantly agreed to ok another refill of amoxicillin. Once again I
scheduled an appointment, but this time the doctor was busy, so his
NP saw me. She left the room after I described my returning
symptoms. When she returned she told me the doctor suggested I see
someone at the Infectious Disease facility. I knew he was washing
his hands of me but I was relieved. The experts would be familiar
with Lyme and would surely help me. After all, I had the photo, I'd
been to Ohio, and if that wasn't enough perhaps the fact that I had
worked in the field of veterinary medicine for over 15 years would
tip the scale in favor of at least considering Lyme. After several
evasive phone calls to the infectious disease facility I was shocked
to be told they would not see me because the referral letter from my
doctor indicated I was only interested in getting more antibiotics.
This was my lowest point. I had just recently moved to N.C. and I
had no idea where to go for help. I felt so very, very sick. But God
was with me and a special person lead me to a new doctor, and as
this new doctor listened to me cautiously describing my symptoms,
she leaned toward me and said, "First let me say, I am so very, very
sorry for what you have been through." This doctor has been my life
saver. I have been terribly discouraged but when, as she aptly put
it , I have been "ready to put my head in the oven" she has
bolstered my resolve and together we have continued the fight. I am
not cured, but I am better. And I will keep fighting. For myself and
for others. My doctor is a blessing. She is not too proud or
self-righteous to refuse research information, and she has even
traveled out of state to attend a Lyme conference to help me. When I
am well, I will have only her and God to thank. Thank you for
letting me acknowledge this special person.
* * * * * * * *
Nancy Zukowski - I have
Morgellons Disease. This is a condition associated with Chronic Lyme.
It is sad that so little is know about the condition, because the
suffering is quite diverse. It's great to know there are
organizations out there we can reach out & touch so easily. Thank
you for the support.
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