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 (313)774-5038. (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