Kiera

Hi ilovedogs, just sent you a pm about Az PANDAS/PANS support group!

Sent you a pm

Personally, I think mixing it up is probably a good idea . . . Who knows which gut flora are flourishing in one's system and which aren't? We use a mixed probiotic that contains about a dozen different flora, and then also a sach b. -- not Florastor but a Jarrow brand version. Yes, supposedly sach b. is a beneficial yeast that can help crowd out "bad" yeast like candida. If you want (and have the extra cash!) you can go to a DAN Dr and have him order a comprehensive stool analysis - shows the exact gut flora! We were low on lactobacillus, NO yeast after 2yrs on abx (yeah) and a little high on clostridium so doing a course of flagyl to bring that down, and switched to a better probiotic. Now that's custom treatment!

I agree! Dr T believes Pandas research IS autism research! It provides a glimpse into the autism world and may provide the answers, he said all this on one of his radio/blog shows! The explosion of "autism" is all immune/gut dysfunction and depending on age of onset and various other factors, depends on where on the spectrum you fall. There still are "classic" cases of autism, but these are few and far between. The bulk of them start out normal and regress into autism in the early years.

Email: info@pyroluriatesting.com Direct Healthcare Access II Laboratory 350 W. Kensington Road Suite 118 Mount Prospect, Illinois 60056 United States Phone: 847-222-9546 Fax: 847-222-9547

I'm testing ds for this this week. Test cost $80, results come to me. I plan on taking result to DAN dr already treating methylation issues, I also think addressing methylation helps with pyroluria also.

All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented. Discussing on social media has the potential to cause mass conversion disorder! Like, Like, Like!!!

yes - i did think about that, but we do have strong strep evidence for onset, so it served my purpose. . . but i do wonder that also. esp b/c i believe ds had an exacerbation due to stress which would appear that he always has these troublesome antibodies circulating. i just read the synopsis for Dr. T at the upcoming conference and i wasn't sure i was previously aware the alternate fever theory was in constrast to molecular mimicry. EAmom -- are you going to that conference? i'd love to hear about it! Hard to keep up with all of Dr T's evolving theories on the mechanism of pandas From his last podcast he implicated cytokines and a certain area of the brain called the TMN (control center that affects alot of other centers), he's also said histamine is a root cause and at Irvine he's going to announce the 3 genetic defects that are found in 70 - 80% PANS kids!! He thinks autoimmunity is a latent mechanism of long-standing PANS. Brilliant mind, he's throwing out all these theories to open up the discussion of the issue, if anyone can figure it all out, it's Dr T! We just have to saty tuned!

Thanks so much. I do think the neuro would be checking for other things along with the folate levels, as my ds has a hx of dev. delay.