Having just been diagnosed with lyme 3 weeks ago (5 year process or more) I would love to have some input. My name was given to a person from Maine Public Radio. She is working on a lyme disease piece. I was a little nervous about doing this but feel it is very important given the fact that sooooo many people think that lyme isn't this far up in Maine yet! On Thursday I will be doing the interview. The points I plan on making are: 1. Blood tests are not reliable. 2. My MRI continued to show possible MS or lyme but because the blood tests were negative for lyme I spent too much of my time researching MS and not lyme. Although MS didn't account for my skipping heart, chest and rib pain and breast pain. I want to make it clear that MDs don't put all the symptoms together. 3. Rash is not always there....maybe as much or as little as 50% of the time. (Is that accurate?) 4. Some of the diagnosises I had...MS, Chronic Fatigue.... 5. A list of symptoms. Once my sister convinced me to look further into lyme I realized that my symptoms all pointed to lyme. 6. How hard it is to drag myself to school and teach 7th and 8th graders each day....at least teach the way I want to. Any other strong points I should include? Thanks for any help...Cher
Posted by lou (Member # 81) on :
Don't know how long the interview will be. This might be plenty to get across in the amount of time they give you.
The only other things I can think of off the top of my head:
--even though not everyone gets the bullseye rash, it is diagnostic and should be treated immediately. It is the only specific symptom. All of the others can be confused with something else.
--although the tests are not very good, and antibodies take time to develop (so you might get a negative test if it is done too early), nevertheless, prompt treatment is the best way to avoid chronic disease. The longer it goes on before treatment, the harder it is to eradicate.
--a good book to recommend (and to check your facts in) is "Everything you need to know about Lyme disease and other tickborne disorders" by Karen Forschner. Available or can be ordered at local bookstore, or thru Lyme Disease Foundation.
--you can also check your facts at the ILADS website (especially the section called basic info) http://www.ilads.org
Good on you for doing this.
[This message has been edited by lou (edited 02 May 2005).]
Posted by Cher44 (Member # 7243) on :
Thanks Lou This site is my new found friend and a much needed one! I printed that information out and will use it as support. Cher
Posted by bg (Member # 46416) on :
Cher, welcome to our board, and fantastic of you getting someone to do a radio interview with you!
Has TREEPATROL posted on any of your posts yet with his/Tincup's combo newbie links? If yes, look on there towards the beginning of endless,useful links for:
Lyme misdiagnosed as.......
It's a link showing the 300 OTHER illnesses that lyme mimics and that's why it's so hard to diagnose correctly.
Those of us misdx for years, me for 34 years, need long term antibiotics to help us get into remision.
Only 3 reputable tick-borne labs exist in the USA for testing ALL 16 protein banks for ALL strains of lyme: