Lyme Disease Support Group

So I guess I sort of figured my blood test would come back negative for lyme. As I hear they usually are not very accurate. My doctor told me that if the bloodwork would have come back positive they would do a western blot, but he said that it wasn't even close. What do you think that statement "wasn't even close" means. Is there some collection of data that has to add up to a blood diagnosis or something? I went to the clinic and ordered a copy of the test for myself I should have it in a few days.

You probebly had an ELSIA test. check out the forum "Breakdown of Igenex test" or something like that. Jamie, a group leader can give u more insite. Also check out the forum "Lyme a clinical dx." If you have symptoms that can not be explained by another dx then i would go c an LLMD, again Jamie can give u a list of docs in your area, just pm her, private message.

I had an ELISA five years ago come back borderline, then negative, so a Western Blot was never even done. And I have been suffering ever since. And I guess you really have to have an Igenex Western blot (or other reputable lab) because it's so much more sensitive/complete (which I did finally, a month ago---POSITIVE). And even then, depending on the state of the pathogen, it may show up negative (at different times) anyway. As many others have stated, the tests are not the only/definitive way to diagnose Lyme. You need a doctor who's up on all of this. A doctor who won't even run a Western Blot? I'd get me a new Lyme-literate LLMD, if I were you. Don't waste your time and money with a doc who "doesn't get it?" Take it from one who knows. Blessings and luck to you.

Post edited by: PegB, at: 08/21/2008 08:38

I live in Nassau County Long Island, NY. I was wondering if anyone new of a good LLMD in the area. I have had 2 western blots - both negative. The first time I took it 2 bands, now - none. I never had anti biotics so I don't even know why it would be none now. I have many "lyme" symptoms -- but I need a doctor who will listen and understand. Any info would help. Thanks.

that makes no sense at all! they should have done a western blot to begin with, but never mind that because the testing should really be done thru a special lab like IGENIX, and lyme is usually treated based on symptoms because MOST people do have a CDC negative test. My test didn't reach cdc standards, but I do have some positive bands and over 60 symtpoms, so my lyme doc treats. And a lot of times a test will come back even more positive once you're in treatment because lyme knocks your immune system down so much it can't even make the antibodies that they test for, so when you're in treatment and your immune system starts kicking in, making antibodies, and if you retest it looks like you're getting worse, when in reality you're not.

pm me if you'd like a list of docs in your area.

warmest regards,

jaime