which ingenex tests?

[norcalmom]

I all,

I just checked out the igenex website, and was wondering if anyone could advise on which tests I should order for my pandas son. I don't have any reason to suspect Lyme, but definately want to make sure it is not playing a role in ds's pandas. We never proved a strep infection with cultures or titers (although I'm pretty sure I treated a mild case of what I now know is peri-anal strep with antibiotic ointments) several weeks before pandas onset...but seems that researchers now saying Lyme can casue it too so I'm getting him tested.

 

We live on the West Coast, but we travel to the East Coast for 2-3 weeks every summer. Additonally my son makes no anibodies to strep pnemoniae, and has low IgG, so I don't know if the tests that measure antibody response will work with him.

 

Is "complete Lyme panel" all we need? I've read he has to go off antibiotics for 2 weeks to take the test? REALLY don't want to do that. I'll have to see how things go. We are 3 weeks post ivig, I'm hoping not to have to take the test becuase IVIG works so well, but getting my ducks in order in case it doesn't.

[MichaelTampa]

First of all, unfortunately, none of the tests work well enough to really rule out lyme if they all come back negative. There are just too many problems with it. The tests that look for antibodies have the problem that your body can be too weak to make enough to be noticed, or maybe the body can't make antibodies (like your son can't for strep). The ones that look for the actual lyme bug (PCR), well, lyme doesn't hang out a lot in blood, they like tissue. And all the tests have the problem that there are so many different lyme strains that the tests do not test for all of them.

 

This is why an appointment with someone really experienced in diagnosing and treating lyme is really important, regardless of any test results.

 

As far as which tests to do, I believe it is the PCR where some have said abx messes it up. Sounds like your son's situation is one where getting off the abx is a real problem, seems like reason enough not to bother with the test. How many to do is a real judgment call, somewhat depends on how much money you have to spend. In general, I suggest the IGeneX western blot, IGG and IGM, get an appointment with a lyme doctor, and that is a good place to start. Then you and the lyme doctor can always decide to do more if it really seems like it would be helpful.

 

Regarding being 3 weeks post-IVIG, I have a feeling that could mess up any test results, even western blot. Someone else my chime in for sure, or maybe IGeneX can tell you, but, so soon after IVIG, if it comes back positive for lyme, the question would be, how much of that is from your son, and how much is from the IVIG donor blood?

 

Michael

[lyme_mom]

First of all, unfortunately, none of the tests work well enough to really rule out lyme if they all come back negative. There are just too many problems with it. The tests that look for antibodies have the problem that your body can be too weak to make enough to be noticed, or maybe the body can't make antibodies (like your son can't for strep). The ones that look for the actual lyme bug (PCR), well, lyme doesn't hang out a lot in blood, they like tissue. And all the tests have the problem that there are so many different lyme strains that the tests do not test for all of them.

 

This is why an appointment with someone really experienced in diagnosing and treating lyme is really important, regardless of any test results.

 

As far as which tests to do, I believe it is the PCR where some have said abx messes it up. Sounds like your son's situation is one where getting off the abx is a real problem, seems like reason enough not to bother with the test. How many to do is a real judgment call, somewhat depends on how much money you have to spend. In general, I suggest the IGeneX western blot, IGG and IGM, get an appointment with a lyme doctor, and that is a good place to start. Then you and the lyme doctor can always decide to do more if it really seems like it would be helpful.

 

Regarding being 3 weeks post-IVIG, I have a feeling that could mess up any test results, even western blot. Someone else my chime in for sure, or maybe IGeneX can tell you, but, so soon after IVIG, if it comes back positive for lyme, the question would be, how much of that is from your son, and how much is from the IVIG donor blood?

 

Michael

Another member had this question about how long to wait to test and I asked my llmd. He said to wait one month.

[justinekno]

This comment scares the bageezus out of me. We are going through Lyme right now and contemplating IVIG to help "boost" my son's immune system to continue the fight against Lyme (and PANDAS). I've heard that the blood is really cleaned but I always have it in the back of mind, what if.

 

 

the question would be, how much of that is from your son, and how much is from the IVIG donor blood?

 

Michael

[norcalmom]

Thanks everyone! I think Michael is talking about the antibodies to the lyme bacteria..not the actual disease. Although, yes I agree, its scary. It took me along time to finally have ds do it.

[mama2alex]

I've been reading up on Lyme lately, and my understanding is that it does not hang out in the blood - it goes straogjt to the organs. So I doubt you could catch the actual disease through IVIG. I suppose your child could get some antibodies to it through the IVIG, if a donor had been exposed to it, but that wouldn't hurt them.

 

This comment scares the bageezus out of me. We are going through Lyme right now and contemplating IVIG to help "boost" my son's immune system to continue the fight against Lyme (and PANDAS). I've heard that the blood is really cleaned but I always have it in the back of mind, what if.

 

 

the question would be, how much of that is from your son, and how much is from the IVIG donor blood?

 

Michael

[MichaelTampa]

Yes, I really was referring to the antibodies that could be coming from the donors. They do have blood tests to look for the lyme bugs (I think they call it PCR?), so, perhaps that is an indication that it is at least possible to have a lyme bug in blood. However, I have also read, they do like to hang out in tissue and particularly organs, making it much less likely to get an infection of that sort from donated blood. Of course the donated blood is also screened and cleaned and all that, and hopefully that process has a good bit of value as well.

 

Michael

[lyme_mom]

If you have babesia you can never give blood again. Don't know about Lyme. As we know Lyme testing is not reliable. They must have a way to clean the plasma. I am interested in how they address this if anyone ever finds out.