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ALASKA
Christine Mayne - I am a former
resident of New York State. Living in Holland, New York in 1978 I
contracted Lyme Disease while raising Samoyed dogs. I relocated
within two years to Anchorage and continued to remain ill until
reading an article on Lyme in Time Magazine. Diagnosed at Stoney
Brook University Hospital in 1989 I lived with Lyme undiagnosed all
the previous years. I had all the symptoms listed and the brain was
infected so I wrote from right to left and had sufficient memory
loss. Any emails directed to me I will answer. Doctors and
psychiatrists here were all to familiar only one Ph.D. understood
the symptoms and the Rocephine worked wonders as did continous
scalding hot baths. Saunas and heat were my only friends.
Interestingly I used tools to help my memory as I supplied
information to law enforcement here with notations written down on
yellow sticky sheets as the memory loss was consistant. I was known
for my proficiency with information. I still laugh and am fascinated
at the amount of brain involvement caused by Lyme. I recognize all
the articles and information I read are relevant to understanding
Lyme and now at least the information is available. At the time I
was diagnosed there were telephone connections being made across the
U.S. from New York to Alaska and beyond to keep us in touch with
other patients. Congratulate yourselves on your success with
accumulated information on the subject! I remain a reader of
information forty years later. Christine (Nelson - Ross) Mayne
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Dawn Quinn - I have only been
bitten by one tick in my life, when I was 4years old in Novato, CA.
I was diagnosed with Lyme Disease when I was 8. I am now 25. It has
been quite a struggle. I was put on massive amounts of antibiotics
at a young age and tested frequently. I soon become somewhat of a
guinea pig to the doctors who had access to me, not that I blame
them, no one really knew about the disease at that time. I was never
told much about the disease or the effects that it might have on me
other then that it might cause some mild arthritis. As I got older I
began to study it myself and became a bit scared that no one had
ever warned me. Now, I don't have a clue as to where to begin
finding help as I have been scoffed at many times when I tell a
doctor I have Lyme disease. I wish I had more information on this.
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Bruce Deile - Hiked Appalachian
Trail Georgia-Maine 2/4/01-6/18/01. Prepared for Pacific Crest Trail
but bit by tick in Annadel State Park, Santa Rosa, CA. Large red
rash (EM) 10 days later. ER doc diagnosed Lymes, prescribed 3 weeks
of abx. On 5th day woke up and hands/forearms seemed paralyzed (parasthesias).
ER doc diagnosed that as allergic reaction to abx. switched to
another for 16 days. The parasthesia may have been herxheimer
(reaction from the killing of bacteria). By switching abx. may have
allowed infection to persist. However, ILADS states no one is cured
with only 3 weeks of abx. (standard protocol), so may have remained
infected regardless (if indeed it is a chronic infection). I was
very outdoorsy--loved downhill/x-country skiing, hockey, baseball,
hiking, jogging--but seem to be getting worse slowly over time.
Seizures and vertigo; I also use a service dog. Stiff neck, blurry
vision, dizziness, joint pain/stiffness, etc. Used to love walking,
now use profanity when forced to walk long distances. Has become a
struggle but at least it's not paraplegia (yet?). Grateful to be
walking however difficult. I have traveled the country (hitchhiking
[dangerous]/Greyhound) seeking IV antibiotics the NIH states bring a
full recovery in most Lyme patients. Low-income clinics and ER's in
over 8 states have denied treatment. Since NIH scientists
simultaneously contract out to pharmaceutical companies, unconvinced
IV abx. would actually bring a cure if ever fortunate enough to
try. LLMD's do not take indigent patients. And abusiveness of
doctors/nurses has been trying. One ER doctor replied in front of
the nurses station when they were turning me away (I had said I was
losing my legs)-- "Where did you lay them? Has anyone seen this mans
legs? How is it you keep losing them? Call security--he's been
discharged!". When diagnosed with Lyme disease at an ER (6/14/02),
the nurse told me to sit in waiting room as they tried to find where
I might go to have a blood test. She came out as I was sitting there
watching TV and became irate, saying "Why are you still sitting
here? You just want to watch TV don't you? You have nowhere to go
and think you can sit and watch TV here." I tried to explain I was
waiting to find out where to go for blood test but the nurse
immediately called security and I was forced off property under
threat of arrest for trespass. 86'd upon Lyme diagnosis. Terribly
abusive. U.S. healthcare seems a nightmare.
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Eric Parsons - Suffered from Lyme
disease in my teens, and luckily got over it with exercise and
antibiotics. Still have knee troubles but doing very well now! thank
you!
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In
the interest of making the stories palatable for everyone, please
spell-check your submissions, and substitute a word like "antibiotic(s)"
or abx for drug names. This site is foremost about telling the story of our
disease and problems with diagnosis, treatment, etc.
Please refrain from listing every drug and/or dosage you have been
on. We have all been through a unique experience and that is the
focus of this page. Thanks for your understanding and cooperation.
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