The LYME/PANDAS paper is published

[butterflymom]

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Edited October 5, 2015 by tampicc

[rowingmom]

Thank you, thank you! I just sent this to our open-minded, yet main stream pediatric psychologist who had Dx DD10 with Aspergers, motor tic disorder and probable PANDAS, but only suggested treatment with psych meds. She seems very interested in the resolution of DD10's ASD and tic symptoms with Abx treatment.

[Fixit]

The paper is free to download and read:

 

http://www.dovepress.com/lyme-disease-and-pediatric-autoimmune-neuropsychiatric-disorders-assoc-peer-reviewed-article-IJGM

 

 

Thank you. I will print this.

 

brief update

DS12 has been doing well, trending slowly better, following a lyme, myco p protocol.

Like last spring when we restarted with a doxy protocal at a slow rate, (but had to restop),

this 3rd attempt (starting in the fall), took 12-16 weeks to see the first softening of tics.

We do have flares with each tooth loss for about 5-7 days.

His first 12yr molar started to come in just over 2 weeks ago. When it took more than a week for the ramp in symptons to resolve i started to wonder and worry what to do and what am missing.

They started to resolve about 2 days ago, taking 2 weeks for the molar. ONly 3 more to go

Edited February 23, 2012 by Fixit

[momcap]

I really appreciate this paper. Finally someone is making a link between PANDAS and lyme in the literature. However, I'm concerned that in juxtaposing the 2 conditions they are sending a message that you can't have both, and that they are considered mutually exclusive. Did anyone else get that impression?

 

I'm certain my son has both. He has symptoms on both sides of their lists in Table 2. He's always had issues, and I'm pretty sure he has gestational lyme. I didn't know I had lyme, but now I know I am CDC positive and all 3 of my boys are IgeneX positive. I don't think we ever would have discovered lyme if it wasn't for PANDAS. The boys got scarlet fever over 3 years ago and all heck broke loose. And here we are 3 years later with only 1 child whose ASO is finally almost normal. DS8 (PANDAS) is dropping but still in the 300s. DS5 is also dropping but still in the 600s!!! DS8 had positive Cunninghams (CamK II at 176 and anti-dop 1 in the 4000s). He reacts VERY badly to strep exposure, even if he doesn't get it himself. How can that not be PANDAS? I'm assuming the lyme infection created an environment that made PANDAS possible, but that's just my theory. Perhaps it damaged his blood brain barrier, or perhaps it messed up his immune system so that he would react this way to strep. I don't know. But I am glad they published this paper. I think it's a good start.

[momcap]

Double post

Edited February 24, 2012 by momcap

[MichaelTampa]

I really appreciate this paper. Finally someone is making a link between PANDAS and lyme in the literature. However, I'm concerned that in juxtaposing the 2 conditions they are sending a message that you can't have both, and that they are considered mutually exclusive. Did anyone else get that impression?

 

I'm certain my son has both. He has symptoms on both sides of their lists in Table 2. He's always had issues, and I'm pretty sure he has gestational lyme. I didn't know I had lyme, but now I know I am CDC positive and all 3 of my boys are IgeneX positive. I don't think we ever would have discovered lyme if it wasn't for PANDAS. The boys got scarlet fever over 3 years ago and all heck broke loose. And here we are 3 years later with only 1 child whose ASO is finally almost normal. DS8 (PANDAS) is dropping but still in the 300s. DS5 is also dropping but still in the 600s!!! DS8 had positive Cunninghams (CamK II at 176 and anti-dop 1 in the 4000s). He reacts VERY badly to strep exposure, even if he doesn't get it himself. How can that not be PANDAS? I'm assuming the lyme infection created an environment that made PANDAS possible, but that's just my theory. Perhaps it damaged his blood brain barrier, or perhaps it messed up his immune system so that he would react this way to strep. I don't know. But I am glad they published this paper. I think it's a good start.

 

Gosh, yeah, in a way I'm glad someone's thinking and writing about the two of them at the same time, but they started the paper out by saying they are mutually exclusive, with no explanation or footnote justifying that comment (despite the multitude of footnotes for other claims). They lost quite a bit of credibility in my mind starting out like that. I haven't finished the paper, by the way, just started reading it this morning.