Thanks, I'm so glad you like the link (I also have the jerking and teeth aching). I'm going to post a couple more links in case someone here hasn't seen them, as well, I'm going to post a couple of emails from a friend (
in Bold) of mine whose son has Lyme's. This friend has 3 PhD's, a photographic memory, and doesn't miss a trick.
The simplest short answer to the testing conundrum is, Lyme is an immunosuppressive organism. The vast majority of Lyme infected people will test negative for Lyme. I can not overemphasize that a negative test does not mean that you do not have Lyme or associated coinfections. There is also a slew of ridiculous politics that make the test even worse than it could be--if you are ever interested I could summarize it for you, but it is easy enough to find out about. I would put money on the idea that you have Lyme. If you do, a course of antibiotics will often unmask the disease so that you become seropositive. I think that you should pursue it--but of course it is your body. But I think you should call Dr. T. C. in Kennebunk. She specializes in treating Lyme and her husband is her partner and is a naturopath. I also think you should go to this web site and read what they say, especially the Burrascano guidelines:
http://www.lymediseaseassociation.org/index.html
Here is another link I thought might be useful:
http://abreathofhope.blogspot.com/2005/03/interface-if-cronic-lyme-disease-cfs.html
Dr. D. is the doctor we are going to try to make a connection with. . .
And, this message is more recent...
If Dr. D. is right, IGENEX should give you the positive result you need (he didn't even send a test out for Kieran because he pretty well implied that they almost always get a positive result, but that's not the point, the point is if you try the antibiotcs and they don't help, what have you lost?? So whatever you do to get them prescribed so you can give it a try is worth it.
Meanwhile, if you do get started on antibiotics, and you have Lyme, expect a flare of symptoms, somteimes pretty severe...take comfort, if it happens, that that is considered nearly diagnostic by Lyme practitioners and means you are on the road to recovery.
Now, my daily prescriptions are: oxycontin, oxycodone, neurotin, clonazapam, etc., etc., so you would think that with they slew of doctors/specialists that I've been to and no one can give me an actual diagnosis other than, well, maybe Fibro, that they would at least try the course of antibiotics. I guess I'll just have to insist more loudly.
Sorry this is so long...
Cindy
Post Edited By Moderator (CajunGrl) : 7/25/2009 11:20:00 AM (GMT-6)