Has anyone tested negative on IGNEX?

[lyme_mom]

tpotter - I don't think that ALL kids with PANDAS are going to test positive through IgeneX, but if you have ANY reason at all to believe it is a possibility... known tick bite, endemic area, spend a lot of time outdoors, etc... then I would recommend testing. As I stated in a previous post, I do believe that it is possible to have a false positive test, especially the IGM western blot. IgeneX IGM results actually state "Infection with HSV, EBV, HCV, and/or syphillis (RPR+) may give false (+) results." I also think it is possible to have a negative test, but still have Lyme. Everyone's immune system is different and will mount differing responses. Overall, the testing just isn't terribly reliable. That's why I think it takes a multitude of tests for various infections to help rule things in/out.

 

Jag10 - If you keep looking around on the internet, you will find statistics all over the board (from 30% - 90%) regarding the bulls-eye rash. The truth is probably somewhere in the middle, but I also think that atypical rashes (red, but not a bulls-eye) are under appreciated in medical literature, and LLMD's will tell you this also. About band 41... yes, that's basically it... any microbe with flagella (tail) can cause a reaction at band 41 such as E coli, salmonella, and others. That's why so many people have a positive reaction at this band. It is not specific for Lyme. As stated above, Epstein Barr (EBV), Herpes Simplex (HSV), and other viruses can cross-react at band 31 (and possibly others) of the western blot and make the band appear indeterminate or positive.

From what I have read the rashes are not common at all. Also the rash doesn't have to be a bullseye exactly. My son had what looked like large mosquito bites after the camping trip that made him sick. I believe they are the bites that gave him lyme but I will never know for sure. They were bothering him and he pointed them out to me so that is why I remember them. Otherwise I would never have paid attention to them. I remembered them when he got very ill five weeks later.

[MichaelTampa]

More reasons to forget the rash:

- they may not last that long, what if they appear on an area of the body that you don't look at so much or ever, and it is gone in 24 hours

- for all the kids here, if they are born with lyme, when could there be a rash

 

I have heard some do eventually see rashes during treatment, and it is a sign that they are finally getting somewhere.

 

Myself, I never saw one, at least that I remember.

[wornoutmom]

question: if you know your child has EBV, how do you interpret the test results? Do you assume a positive result is due to EBV infection and not lyme?

[matis_mom]

Let me just say...... If you thought PANDAS was overwhelming try reading up on LYME

Wendy,

I know exactly how you feel, I am so afraid to go down that path!

[lyme_mom]

question: if you know your child has EBV, how do you interpret the test results? Do you assume a positive result is due to EBV infection and not lyme?

? I would never assume it is a false positive-I'd get an opinion from a lyme literate doctor. With lyme the earlier you start treating the easier. Also it is quite common for lyme patients to be coinfected multiple infections or viruses like EBV. Lyme can open the body up to all kinds of infections. What bands were present?

[Iowadawn]

If someone knows a GOOD LLMD in the Midwest PM me.

 

We are waiting for the IGenex results on our PANDAS son--probably a week out. I will not go to the one in Iowa seeing the doc's hx with the State Board of Medical Examiners. He is the only Iowa one and not very far from my town, but the seriousness of his discipline is too much. Errr. I do not want to dink around should these tests come back looking suspicious. I'll fly if we have to get to a good doc. I did a gulp while reading an earlier post by SF Mom and multiple IVIG's. Hmm. And we wait. Dawn