Lyme and Pandas

[MaggiesMoons]

"doctor suggested Igenex testing (they were both definitively negative on LabCorp's Lyme last year). Well, I just got a call and both of them are positive for Bartonella."

 

I just read this on another post....curious why the child tested Negative with Laborp and then why it was decided to re-test a year later with Igenex???

My DS dx with PANDAS-more PANS-non-strep triggered but possibly viral triggered or seronegative PANDAS was negative for Lyme test through quest diagnostics recently. How do you decide to do a retest and what is Igenex testing??? Trying to figure this stuff all out, and still not sure!

 

Also, is the metals test something specific to ask for? We have been working with Dr T and he has tested for Lyme etc, but not the metals stuff.

Edited November 12, 2011 by MaggiesMoons

[LNN]

The standard labs (Lab Corp, Quest etc) follow CDC guidelines and test for specific bands of antibodies against borellia. They specifically omit bands 31 and 39 (I think - memory is rusty) which were bands that would show up if people got vaccinated with the lyme vaccine developed in 2000. The CDC said don't test for those bands or the whole country will test positive for lyme. Well, the vaccine was a total failure and was pulled from the market in 2002. But the CDC has never updated its guidelines.

 

Igenex is a lab that does test for bands 31 and 39 and other bands that are commonly seen with lyme. So Igenex is often used in the lyme community because you can test negative on a CDC western blot but positive on an Igenex western blot. To get an Igenex test, you can call the co and they'll send you a collection kit. But you'll need a doctor to sign the form requesting the labs. (some chiropractors have signed for patients).

 

Bartonella is a separate test. Igenex will run a test that looks for antibodies to bartonella, babesia and one other (again - memory fails me). It's expensive. Specialty Labs - a division of Quest - also has a bartonella test that only tests for that one infection. It is usually covered by insurance. But lyme doctors have preferences and I'm not trying to suggest one lab over another. Igenex also looks for infections in other ways with other tests. Your best bet is to work with a doctor who understands the options and can guide you. Specialty Labs' bartonella test is considered fairly valid, but I don't think their lyme test is any different than any other lab that follows the outdated CDC guidelines. For lyme, I personally would recommend Igenex.

 

As for metals, there are a few labs that will do urine and/or hair tests to look for heavy metals (mercury, lead, cadmium, aluminum, et al). Metals is a whole can of worms. Tests for metals are even more unreliable than lyme tests. Yet metals can cause a huge issue for both kids and adults (and especially kids of moms who have a lot of amalgam fillings like me). Since you're just sticking your toe in the water, I don't want to bombard you with info. But do keep it on your list of things to look at. Lyme, chronic infection and metals often go together. The bacteria may use the metals to help suppress the immune system and make the body a better host. If you want pursue, let me know and I'll try to share what I know.

 

The last I knew, Dr T was not using Igenex or lyme labs for his testing. So it's good he's open to it, but he may not be using the best tools (all are admittedly flawed at best). If you're in the tri-state area or southern New England, there are other doctors who are more versed in lyme issues. Many of us can PM you with names. But maybe ask Dr T if he'll sign an Igenex test for you and see where the results take you. The guiding principal is to follow your son's symptoms. If he's not getting well on a Pandas protocol, then consider alternatives. I've had to consider a half dozen "labels" and had to pick and chose treatments based on what worked and what didn't. Labels matter less than results.

[MaggiesMoons]

The standard labs (Lab Corp, Quest etc) follow CDC guidelines and test for specific bands of antibodies against borellia. They specifically omit bands 31 and 39 (I think - memory is rusty) which were bands that would show up if people got vaccinated with the lyme vaccine developed in 2000. The CDC said don't test for those bands or the whole country will test positive for lyme. Well, the vaccine was a total failure and was pulled from the market in 2002. But the CDC has never updated its guidelines.

 

Igenex is a lab that does test for bands 31 and 39 and other bands that are commonly seen with lyme. So Igenex is often used in the lyme community because you can test negative on a CDC western blot but positive on an Igenex western blot. To get an Igenex test, you can call the co and they'll send you a collection kit. But you'll need a doctor to sign the form requesting the labs. (some chiropractors have signed for patients).

 

Bartonella is a separate test. Igenex will run a test that looks for antibodies to bartonella, babesia and one other (again - memory fails me). It's expensive. Specialty Labs - a division of Quest - also has a bartonella test that only tests for that one infection. It is usually covered by insurance. But lyme doctors have preferences and I'm not trying to suggest one lab over another. Igenex also looks for infections in other ways with other tests. Your best bet is to work with a doctor who understands the options and can guide you. Specialty Labs' bartonella test is considered fairly valid, but I don't think their lyme test is any different than any other lab that follows the outdated CDC guidelines. For lyme, I personally would recommend Igenex.

 

As for metals, there are a few labs that will do urine and/or hair tests to look for heavy metals (mercury, lead, cadmium, aluminum, et al). Metals is a whole can of worms. Tests for metals are even more unreliable than lyme tests. Yet metals can cause a huge issue for both kids and adults (and especially kids of moms who have a lot of amalgam fillings like me). Since you're just sticking your toe in the water, I don't want to bombard you with info. But do keep it on your list of things to look at. Lyme, chronic infection and metals often go together. The bacteria may use the metals to help suppress the immune system and make the body a better host. If you want pursue, let me know and I'll try to share what I know.

 

The last I knew, Dr T was not using Igenex or lyme labs for his testing. So it's good he's open to it, but he may not be using the best tools (all are admittedly flawed at best). If you're in the tri-state area or southern New England, there are other doctors who are more versed in lyme issues. Many of us can PM you with names. But maybe ask Dr T if he'll sign an Igenex test for you and see where the results take you. The guiding principal is to follow your son's symptoms. If he's not getting well on a Pandas protocol, then consider alternatives. I've had to consider a half dozen "labels" and had to pick and chose treatments based on what worked and what didn't. Labels matter less than results.

 

Thank you so much for the info. I will look further into all of this, wow so much to consider. Wish it were as simple as just strep triggered and ABX. But on we go to find the real culprit and Squish it!