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As I approach LLMD appointment: Which Igenex test to ask for?

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Posted 3/3/2015 8:13 AM (GMT 0)
Is the PCR test often times positive? I just read a story of a lady that came "inconclusive" in her IGENEX WB and then the LLMD ordered the PCR test and it was positive? Your thoughts, please! I never used IGENEX, my test was + through Quest Diagnostics, so before I fork thousands of $ to test 3 kids, I would like to get some opinions on which tests are most reliable.

THanks!
Posted 3/3/2015 2:51 PM (GMT 0)
No, it is not often times positive. It is harder to get a positive.

I ordered the full Lyme test, I forget what they call it, but it was ~ $400. My Western Blot was CDC and Igenex positive and my PCR was negative. Does that help?
Posted 3/3/2015 4:14 PM (GMT 0)
Thanks Sarah, I guess it depends, then. I've read 2 stories here
**one person having a negative WB and a + immunoflorecence test,
**the other having a negative WB but a + PCR test

I was hoping to narrow it down to the most accurate, but I guess even the Igenex is having a hard time with those tests turning +.

Thanks again!
Posted 3/3/2015 10:26 PM (GMT 0)
I got the WB - IgM and IgG - for approx. $200.

I guess it depends how much you're willing to spend. If money wasn't an issue, I would get the full panel...and co's as well
Posted 3/4/2015 12:44 AM (GMT 0)
I agree with Girlie. If you can afford it, test for co-infections. If not, I recommend Horowitz's book "Why Can't I Get Better?" He has a excellent chapter on differential diagnosis which is helpful for figuring out which co-infections you or your kids may have. I only the Lyme WB because it all seemed so expensive. Not knowing which co-infections I had made treatment harder to tailor to my needs, and I probably spent a few extra months in extreme pain and discouragement because I wasn't treating Bart along with Lyme. In hindsight I would have spent the extra money to check for co-infections.
Posted 3/4/2015 3:39 AM (GMT 0)
Thanks, Girlie and Ark!

It is not that I don't want to spend the money to find out what is wrong with my kids.  I think I was misunderstood.   It is the fact that I've read so many people tested negative even through Igenex especially for co-infections.  Too many from what I have read on here!  So, if the tests were accurate, I would gladly fork the bills for a complete test of lyme and co.  But if they are negative, what would be the point?  So that is what I am struggling with in making a decission weather to test or not for co-infections.  Are there better labs for co-infections?  It seems that Igenex is good for Lyme compared to other labs.

But when it comes to co-infections, too many people tested negative on this board although they had the co-infections.  So that is my dilema.  Of course if the tests would be 100% accurate I would test them for everything!  I just don't know at this point if it's worth it or not.  And a negative test for co-infections wouldn't give me any more confidence or peace of mind that they are not infected with a particular disease than not doing the test at all. 

THere are several members that tested negative for co-infections but eventually their doc clinically diagnosed them with them, despite the negative coinfection Igenex tests.

Thanks so much for your help!

Post Edited (Simela1) : 3/3/2015 9:30:01 PM (GMT-7)

Posted 3/4/2015 3:07 PM (GMT 0)
As far as I know, there really aren't any great labs for co-infections. The tests just aren't good enough.
Posted 3/5/2015 5:38 AM (GMT 0)
Thanks, Sarah!

I think I will do the WB for Lyme and then take it from there.
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