WindowsWare 2 the Maxx/winmaxx.zip/winmaxx/COMM/MNTEXT37.ZIP/MYLYME.TXT

Text File | 1991-12-30 | 4KB | 69 lines

Dear Sir or Madam,
     I am writing this letter to tell you a little about myself, my
experiences with Lyme Disease and a new service I am starting for Lyme
Disease Patients. First I will tell you about my experience with Lyme
Disease, then the service.
     I think I have had Lyme Disease for 20 years. I got lost in the woods
when I was a child and was practically infested with ticks. My uncle joked
about me having Rocky Mountain Spotted Fever because of the rashes I got
and flu like symptoms.
     After that I had all kinds of neurological problems with three
surguries for carpal and tarsal tunnel syndrome. I also experienced
continual problems with arthritis in my ankle and shoulder joints,
constant bouts of fevers of unknown origin and Chronic Fatigue Syndrome.
I also had a problem with my Lymph glands which caused severe abdominal
pain and eventually led to me having my appendix removed because doctors
felt I had chronic appendicitis.
     Finally, in July of '90, I lost my vision due to "optic neuritis".
Lots of tests were done to check for MS, Lupus, Viral infection, etc. One
of the tests was for Lyme's but it was negative. (I now understand the
test for Lyme's is only about 60% accurate.) The doctor put me on I.V.
steroids for a week to reduce the swelling in my optic nerves. This did
restore my sight for a short time but within a week I was having seizures,
lost sensation in my legs and was about as week as a puppy. Back in the
hospital for more tests which really didn't find anything conclusive.
Evoked potentials showed some kind of problems with my nervous sytem
but were non-specific. MRI's showed MS like plaques but 2 spinal taps
testing for MS and Lupus proved negative.
     Finally, in December of 1990, I chanced upon an article about Lyme
Disease. I asked my doctor to retest. He was willing . The titers were
marginal. He decided to do a test run on antibiotic therapy. It was like a
miracle. My sight has improved dramatically and I have enough strength
to get on with most daily activities. I still have some bad days. I have
been on intravenous antibiotics for about 32 weeks total on and off. I
continue to have recurring symptoms and still struggle with TMJ, Carpal
Tunnel, Chronic Fatigue, and Migrane headaches. Lucky for me my husband
has been very supportive and understanding. He has some trouble with my
constant fatigue because he knows how much energy I have on a good day but
his anger is directed at my disease not me. If it wasn't for him I don't
know how I would have got thru all this. I had a Mediport implanted in
July and this is a real help as I can totally take care of my I.V. myself
and don't need to rely on a nurse coming to the house. It has increased my
independence dramatically.
     Anyways, I wanted to share my experiences with others. There are
several support groups in Michigan but they are all at least 2 hrs drive
away and I rarely have the excess energy to make the monthly meeting. I
decided to start an Electronic Bulletin Board Systen or BBS to give myself
and fellow Lymies the opportunity for access to information 24 hrs a day &
7 days a week so that it will be there when we need it as well as when we
have the energy for it.
     The Lyme Light BBS went online November 1, 1991. It can be accessed
with a computer and a Modem at [phone]. (300/1200/2400 baud) Set
your communications software for 8 databits, 1 stopbit, No Parity, Echo
Off. There are several message bases and a file section where users can
exchange thoughts, ideas and information. There is even an area where you
can play a game or two and forget about Lyme Disease for a while. If you
have any information you would like to see posted on this Bulletin board
upload it or send it to me:

Anne Bussell
The Lyme Light BBS
14413 Hendricks
Warren,MI 48089

     I am trying to get up to date information which I can display and
share with the public.

Amberle Stargazer