Question about lyme testing via igenex

[Kiera]

Hi all,

For those of you that have tested for lyme via igenex did you take your kid off abx for the suggested 3wks? Have any of you done it while on abx and what's the issue - abx can supress a true pos?? or something else? Tx.

[philamom]

No need to take your child off abx for the Western Blot (IGM/IGG).

[Kiera]

I already have the western blot IgG/IgM, that's negative, but apparently this basic testing is pretty useless if negative, that's why you have to do the more specific testing via igenex. I've been reluctant to go down this road but here I am !!

[philamom]

Yes, I meant the Igenex Western blot is fine while on abx. We also have ordered Igenex B. duncani & babesia fish while on abx.

Edited July 18, 2012 by philamom

[LNN]

The standard WBs that follow CDC criteria (Quest, Labcorp et al) aren't terribly reliable. What makes the Igenex WB different is that it looks at two of the lyme-specific bands that the CDC tells other labs to omit (due to ancient/failed vaccine plans that would've made testing these bands unreliable - but when the vaccine failed, these bands should've been added back to the criteria - grrr). Can't recall which two bands - 31 and 34?.

 

We did the Igenex WB while on abx. Came back with 5 positive or indeterminates. But if you want to run the PCR test (which I think looks for DNA evidence of lyme, rather than antibodies to lyme), then I think you need to be off abx. That said, if you truly want to get a test with the least amount of debate, and you can go off abx for 4 weeks, I'd recommend the "new" lyme culture test from Advanced Labs that came out last fall. Your doctor needs to order the kit, it costs about $600 and insurance doesn't cover. But they culture a blood sample and take a picture of spirochettes in your blood - like a strep culture. If you have a photo of a spirochette in your blood, there's not much to debate about whether you have lyme. http://www.advanced-lab.com/

[Kiera]

Ahhh, thanks all for the clarification! I didn't know igenex WB is different from mainstream WB! I think that's where I'm starting (have emailed Dr B waiting on clarification of which test) He said we could test for co-infections later if necessary. He upped my ds's abx as he's still very symptomatic but we think he has a clogged sinus again (awaiting CT of sinus!)so don't think going off abx is possible at the moment!

[beeskneesmommy]

I did not take my son off abx. IgeneX testing was thru Dr. Bouboulis' office. I was not told to do so. Lyme and Bart both were borderline +. I have always questioned IgeneX's results. My son is classix Strep:PANDAS morphed to PITAND. 10 months later we used another facility that also used the long culture method and both Lyme and Bart were neg.

[LNN]

You may want to discuss the possibility of doing a combo abx. Lyme is almost always treated with more than one abx at a time. It won't help you with diagnosis, but it also won't hurt you to be on 2 abx during an Igenex basic panel test. It's possible you could at least get a break from the sinus issue and/or symptoms that aren't resolving.

 

We initially tried zith+augemtin but this had no effect (it does help many, just not us). When we first started with our LLMD, he kept these two (so as not to change more than one factor at a time) and added bactrim. Saw great improvements in that first few months.

 

Another thing to consider is biofilms if recurring sinus issues are at play. But I don't think I'd try to tackle those on my own or without an LLMD. I hear you on not wanting to go down the lyme trail. Fraught with controversy, a money pit, doctors contradicting one another, guessing at what's going on - oh wait - that's Pandas. So fear not. You're already Alice in Wonderland. Looking into lyme probably won't make life any crazier than it already is. For some, it helps clear roadblocks. It was a good course to pursue for my son. I'm actually drafting a blog about what "normal" feels like after so many years of treating illness. (of course, my DD is flipping out on me just so I don't get full of myself and start to get used to "normal").

[Kiera]

I hear you on not wanting to go down the lyme trail. Fraught with controversy, a money pit, doctors contradicting one another, guessing at what's going on - oh wait - that's Pandas. So fear not. You're already Alice in Wonderland. Looking into lyme probably won't make life any crazier than it already is.

 

You said it!!! Do I really want TWO controversial disorders!!! And spend another 1000hrs on the internet trying to figure out how to manage it!!!!