FB Group PANDAS/PANS with Lyme

[cara615]

Hi! I know some of you may be on this group. I was added by a friend recently and I am noticing that there are some people that feel that Lyme is the underlying cause of MOST cases of PANDAS/PANS. They think its the root cause of the immune system disregulation. I never considered Lyme to be an issue for us as ds only has tics. But I plan on ruling it out.

 

Any thoughts on how prevalent you all think Lyme and co-infections of Lyme really is? Is the Igenx test the ONLY one that is accurate?

 

I just want to make sure I get some other opinions on this as that FB group is scaring me a little.

 

Thanks

[sf_mom]

There are many ways to test for Lyme. Some better than others. Most LLMDs use specialty labs.

 

Advanced Labs: Lyme culture must be off antibiotics for one month

 

NeuroScience: Not good if you have any immune deficiencies

 

Igenex: Tests broader range and specific proteins 'bands' of Borrelia. Igenex Urine Dot Blot is a urine test looks for an antigen but would need to provoke die off with antibiotics or herbs. The Dot Blot is good if there are immune deficiencies. Remember immune deficiencies will create a low antibody response.

 

Stony Brook Labs: Similar to Igenex

 

There are other speciality labs. We tested several ways and were able to get both antigen and PCR (DNA) positive results. Many with PANS/PANDAS do have Lyme however sometimes combination antibiotics will not bring about full recovery. Herx's can be intense. We have found a home in integrative medicine that looks at all aspects of the immune function.

 

Edit: I would agree that not all have Lyme/TBIs but should be ruled out.

Edited March 3, 2014 by sf_mom

[airial95]

Dr. T was specifically asked last weekend at the conference if PANDAS/PANS was really all caused by Lyme disease - he said unequivocally no. He said that PANDAS/PANS - regardless of the trigger - still has a very narrow diagnostic criteria that does not implicate Lyme specifically. Can Lyme cause PANS? He said yes, but that it is not the majority.

 

We have ruled out Lyme with Igenix (tested 2x) and have no reactive bands whatsoever. So it is absolutely possible to have PANDAS/PANS with no Lyme.

 

That being said, it is always good to rule it out, however, don't let the FB group scare you. There are several other FB groups out there for PANDAS/PANS support - all discuss Lyme, however some are less "scare tactic" than others.

[ibcdbwc]

Dr. B agrees, as we discussed this specifically over the weekend. Multiple triggers yes, and lyme and co infections yes. But is it all tick borne initiated? No.

 

However, in our past we had clear strep triggers with the addition of flu and parvo later on. Things were stable for a long while until our bottom fell out again in September. Upon reviewing his previous labs, we noted a positive lyme band via western blot which was lyme specific (23) - this was IgM during a flare from three years ago but ruled out because it did not meet CDC criteria and we did no further testing at that time. Therefore now, we suspect lyme or bartonella involvement somewhere in there. Our onion is very fat.