Dr. Trifiletti on PANDAS

[HanHan]

8PM EST/7PM CST/5PM PST the PANDAS Parents Network interviews Dr. Rosario Trifiletti. This is a live, call-in show. (646) 595-4018. Here is the link: http://www.blogtalkradio.com/PPN Call in number: (646) 595-4018.

[EAMom]

8PM EST/7PM CST/5PM PST the PANDAS Parents Network interviews Dr. Rosario Trifiletti. This is a live, call-in show. (646) 595-4018. Here is the link: http://www.blogtalkradio.com/PPN Call in number: (646) 595-4018.

 

here's a link to the archived talk:

 

 

http://www.blogtalkradio.com/ppn/2012/08/30/beyond-leroy--dr-rosario-trifiletti

[EAMom]

8PM EST/7PM CST/5PM PST the PANDAS Parents Network interviews Dr. Rosario Trifiletti. This is a live, call-in show. (646) 595-4018. Here is the link: http://www.blogtalkradio.com/PPN Call in number: (646) 595-4018.

 

here's a link to the archived talk:

 

 

http://www.blogtalkradio.com/ppn/2012/08/30/beyond-leroy--dr-rosario-trifiletti

 

It was quite long but worth listening to!

[peglem]

8PM EST/7PM CST/5PM PST the PANDAS Parents Network interviews Dr. Rosario Trifiletti. This is a live, call-in show. (646) 595-4018. Here is the link: http://www.blogtalkradio.com/PPN Call in number: (646) 595-4018.

 

here's a link to the archived talk:

 

 

http://www.blogtalkradio.com/ppn/2012/08/30/beyond-leroy--dr-rosario-trifiletti

 

It was quite long but worth listening to!

Why can't I get there w/ the link- I just get a page to sign up for free blogtalk-for me to create a blog, not listen to one.

[EAMom]

8PM EST/7PM CST/5PM PST the PANDAS Parents Network interviews Dr. Rosario Trifiletti. This is a live, call-in show. (646) 595-4018. Here is the link: http://www.blogtalkradio.com/PPN Call in number: (646) 595-4018.

 

here's a link to the archived talk:

 

 

http://www.blogtalkradio.com/ppn/2012/08/30/beyond-leroy--dr-rosario-trifiletti

 

It was quite long but worth listening to!

Why can't I get there w/ the link- I just get a page to sign up for free blogtalk-for me to create a blog, not listen to one.

 

Hi Peg,

this is the link that works for me http://www.blogtalkradio.com/ppn/2012/08/30/beyond-leroy--dr-rosario-trifiletti

 

the link Han Han posted didn't work (maybe that only worked during the broadcast?).

[norcalmom]

Be prepared - its long - 163 minutes. Its good though! (I'm about 30 minutes in, doing some email and research while listening)

[peglem]

Wow. That was amazing. So, what do you guys think of his cytokine theory? It makes a lot of sense for my daughter...She has a lot more going on than just PANDAS, although I think PANDAS plays a role.

[JuliaFaith]

Very interesting show. Took one of the questions for the next dr. visit off my list after listening to it. Thank you for posting!

[JAG10]

I listened to this in its entirety as I did my chores yesterday. I found it a little depressing.....like nobody really has any idea what they are doing with this condition. The problem is not bad or faulty antibodies......but then it's not understood why iVIG helps? And the BBB breach involvement he also finds suspect as it is being described?

Does anyone know if Dr. T is still in process of offering iVIG in his office? He didn't seem that enthusiastic about iVIG.

I find the alternate fever response theory very interesting. We are all over the "does it exist" question (insert eye roll here) but to not even be able to explain what is happening in a rudimentary way that is agreed upon by all left me feeling deflated.

[peglem]

So, Dr. T's theory got me doing a little looking around and I found this:

 

http://physrev.physiology.org/content/88/3/1183.full.pdf

Histamine in the Nervous System

HELMUT L. HAAS, OLGA A. SERGEEVA, AND OLIVER SELBACH

Institute of Neurophysiology, Heinrich-Heine-University, Duesseldorf, Germany

 

And an excerpt from the section on the immune system link:(page 3 of the pdf doc)

Histamine plays a central role in innate and acquired

immunity: in allergy and inflammation, closely associated

with mast cell functions (157, 467), in immunomodulation

regulating T-cell function (318) and autoimmunity (435,

500, 564, 748, 749). Histamine synthesis, signaling, and

function is controlled by a variety of immune signals and,

in turn, modulates cytokine and interferon networks and

function. Histamine-deficient animals (HDC-KO mice)

show elevated levels of proinflammatory cytokines [interferon

(IFN)-, tumor necrosis factor (TNF)-, and leptin]

(500, 564). The gene encoding the H1R is an important

autoimmune disease locus (435) identical to that of Bordetella pertussis toxin sensitization (Bphs), which controls

both histamine-mediated autoimmune T cell and

vascular responses after pertussis toxin sensitization. Histamine

H1R- and H2R-deficient mice have an imbalance in

Th1/Th2 cell function (318, 564) and a lower susceptibility

to develop autoimmunity (435, 748, 749). In contrast,

more severe autoimmune diseases and neuroinflammation

are observed in mice lacking H3R (749), the receptor

confined to the CNS and controlling brain histamine levels.

H4R on immune cells regulate cell migration and

allergic responses in the periphery (135), and together

with neuronal H3R may control trigeminovascular function,

blood-brain barrier permeability, and immigration of

immune cells into the otherwise immunoprivileged CNS

(749).

I haven't read the whole article yet but there are links to virtually everything that has been discussed on this board: methylation, taurine, sleep issues, NMDA receptor, narcolepsy, eating issues, anxiety, etc.

And I think Dr. T's theory is not necessarily in conflict with what other PANS researchers are finding, just that the basal ganglia is affected via the tuberomamillary nucleus of the posterior hypothalamus.

Edited September 30, 2012 by peglem

[EmilyK]

So, Dr. T's theory got me doing a little looking around and I found this:

 

http://physrev.physiology.org/content/88/3/1183.full.pdf

Histamine in the Nervous System

HELMUT L. HAAS, OLGA A. SERGEEVA, AND OLIVER SELBACH

Institute of Neurophysiology, Heinrich-Heine-University, Duesseldorf, Germany

 

And an excerpt from the section on the immune system link:(page 3 of the pdf doc)

Histamine plays a central role in innate and acquired

immunity: in allergy and inflammation, closely associated

with mast cell functions (157, 467), in immunomodulation

regulating T-cell function (318) and autoimmunity (435,

500, 564, 748, 749). Histamine synthesis, signaling, and

function is controlled by a variety of immune signals and,

in turn, modulates cytokine and interferon networks and

function. Histamine-deficient animals (HDC-KO mice)

show elevated levels of proinflammatory cytokines [interferon

(IFN)-, tumor necrosis factor (TNF)-, and leptin]

(500, 564). The gene encoding the H1R is an important

autoimmune disease locus (435) identical to that of Bordetella pertussis toxin sensitization (Bphs), which controls

both histamine-mediated autoimmune T cell and

vascular responses after pertussis toxin sensitization. Histamine

H1R- and H2R-deficient mice have an imbalance in

Th1/Th2 cell function (318, 564) and a lower susceptibility

to develop autoimmunity (435, 748, 749). In contrast,

more severe autoimmune diseases and neuroinflammation

are observed in mice lacking H3R (749), the receptor

confined to the CNS and controlling brain histamine levels.

H4R on immune cells regulate cell migration and

allergic responses in the periphery (135), and together

with neuronal H3R may control trigeminovascular function,

blood-brain barrier permeability, and immigration of

immune cells into the otherwise immunoprivileged CNS

(749).

I haven't read the whole article yet but there are links to virtually everything that has been discussed on this board: methylation, taurine, sleep issues, NMDA receptor, narcolepsy, eating issues, anxiety, etc.

And I think Dr. T's theory is not necessarily in conflict with what other PANS researchers are finding, just that the basal ganglia is affected via the tuberomamillary nucleus of the posterior hypothalamus.

 

 

That is a fascinating piece of research. Look how connected histamine is to all the symptoms! And we do hear of some kids benefitting from the use of Vistaril. Thanks for posting,

Emily

[Missmom]

My son is one who benefits from vistaril, but mostly antibiotics. So what explains the effectiveness of long term antibiotics?

[peglem]

My son is one who benefits from vistaril, but mostly antibiotics. So what explains the effectiveness of long term antibiotics?

Just guessing, but Dr.t's theory still is based on an errant immune response to microbes and other immune system stimulation. So keeping the bacterial load low reduces immune stimulation maybe?