Question re IGeneX Testing

[philamom]

Yikes, philamom or someone else please clarify this. The complete Lyme panel (#6050)includes Lyme PCR-Serum and Lyme PCR-W Blood. Does this mean DD has to be off abx?? Definitely cannot do that!!

 

Nancy

I would suggest calling Igenex directly to get an answer. Someone once mentioned you need to be off abx for the PCR testing...I'm not sure. We ran the Basic Panel which does not include the PCR.

[NancyD]

Yes, I will do that. If so, we'll do basic as well.

 

I would suggest calling Igenex directly to get an answer. Someone once mentioned you need to be off abx for the PCR testing...I'm not sure. We ran the Basic Panel which does not include the PCR.

[Iowadawn]

Just a heads-up so you are not surprised. We paid IGenex $1450. IGenex is out of Network. We had met our stupid $3000 deductible, so that didn't matter. What really can get flukey is when you go over the state lines with BCBS (& probably other companies). You then are in the NATIONAL BCBS program and whatever the rules are for coverage in that state are the ones that apply. So, in our case BCBS in CA said they would normally allow $598 for these tests. So Iowa BCBS allowed $598. NOW this is the point the 70/30 split comes in for going out of network. We will be getting a check for a whopping $420. Better than nothing, but nothing to write home to Grandma about! Dawn

[LNN]

Great suggestion, Laura! I guess I'll do the basic Lyme panel then since I cannot take DD off abx. Are you doing the complete co-infection panel? Also, did you check to see if you are a strep carrier? Other than rapid strep test and ASO/Anti-DNASE B, are there any other tests I should take?

 

I checked my strep carrier status about 18 months ago - whole family was checked. We were all negative, so we haven't pursued that since. DS had a standard elisa and western blot this past March - everything was absolutely negative. So we went ahead with IVIG in June. It was the summer from ######. 8 weeks of bad Pandas stuff. Most of that is now gone, but we're left with muscle pain and brain fog. So we did Igenex about 3 weeks ago. These results came back a mixed bag - overall negative test because you need two positive IGM or IGG bands for a positive. We had several indeterminate bands, one positive IGM and one positive IGG. So not enough to produce an overall positive result. But...all of the "indeterminate" results are on starred, lyme specific bands (31, 34 and 39). So in my novice mind, this is not a slam dunk negative report.

 

When we did the blood draw, I also asked that his ANA and C3d levels be checked. High immune complexes can give you a false negative

 

http://www.lymenet.de/labtests/brenner.htm (see last few paragraphs)

 

DS C3d levels were 52 - (above 8 is high). So it's possible too many lyme antibodies were bound up in complexes to create a positive band. I don't know. But something is preventing DS from getting well and getting his brain power back. And the high c3d shows that his body has a high level of some unknown antigen swimming around.

 

So we will do the full co-infection panel and I may also ask to re-test the basic panel (the Igenex report suggests re-testing in 4-6 weeks for indeterminate starred bands).

 

I'd also have your DDs immune complex levels checked so you know whether the Igenex results may be effected by this.

Please keep me posted.

[lyme_mom]

Your interpretation of the igenex test is right. My first lyme test was igenex and CDC negative but I had indeterminate bands for double starred antibodies. Igenex offers a follow up test where they look at band 31 and compare indeterminate bands to their database of positives. My ind 31 became a positive in this test. I definitely had Lyme but think I may have been tested too early on in the infection. I look at those results you posted as very suspicious for Lyme (it definitely indicates exposure to Lyme). Btw a llmd does not limit him or herself to whether igenex or the CDC considers the test positive. Results like u describe plus symptoms are reason enough for a trial treatment. I am pretty sure Dr j does not agree with either the CDC or the igenex criteria for a positive test. He reads the bands himself and doesn't pay attention to whether the overall result is positive or negative.He also does a complete physical exam unlike anything I have ever seen. There are physical signs he looks for too.

[matis_mom]

15% discount and a chance of reimbursement... this is music to my ears!

I had posted a separate question about this before reading this topic... I guess my question has been answered