some big AH-HA moments!

[eljomom]

I just happened to click on a link that someone posted in a thread about the corinth girl being treated for Lyme. It was Columbia's website (where I believe Brian Fallon is....he's a lyme specialist who researches neuro. lyme, etc..). However, I am seeing these statements AS THEY RELATE TO PANDAS/PANS/PITAND, and not necessarily to Lyme...

 

So I am going to paste a few statements that were in the Frequently Asked Questions sections---these were replies from Columbia. It got me thinking some things...which I will elaborate on after the quotes:

 

"The cause of the psychological symptoms in Lyme disease is unclear. It is clear that patients with acute Lyme disease who develop new onset depressive symptoms or irritability or cognitive disturbances often show a remarkable improvement when given antibiotic therapy. If the psychological symptoms persist or if the initial symptoms are severe, it is very important to consult with a psychiatrist to evaluate how best to treat these symptoms apart from the antibiotic therapy. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated. Treatment of the psychiatric symptoms at that point would require anti-depressant or anti-anxiety medications or psychotherapy."

 

 

I find this interesting. Maybe that's why some of our kids get better when treated right away with abx, and others go chronic. MAybe since the immune system was activated so long that the neurotransmitters functioning is "changed" and no amount of abx will help. Maybe these are the kids who really DO need a "start low and go slow" dose of SSRI's???

 

 

Okay, next quote:

 

"A blood test may be positive for several reasons. First, the positive test may indicate that the person was infected previously by the agent of Lyme disease and the immune system mounted a successful attack which resulted in the long-term production of antibodies against the agent of Lyme disease. That's why tests can stay positive for months to years, even when active infection is no longer present. "

 

I often wonder about strep titers, and how some kids' stay high for so long, even after long abx treatment. Also myco p, etc.....

[LaurenK]

I just happened to click on a link that someone posted in a thread about the corinth girl being treated for Lyme. It was Columbia's website (where I believe Brian Fallon is....he's a lyme specialist who researches neuro. lyme, etc..). However, I am seeing these statements AS THEY RELATE TO PANDAS/PANS/PITAND, and not necessarily to Lyme...

 

So I am going to paste a few statements that were in the Frequently Asked Questions sections---these were replies from Columbia. It got me thinking some things...which I will elaborate on after the quotes:

 

"The cause of the psychological symptoms in Lyme disease is unclear. It is clear that patients with acute Lyme disease who develop new onset depressive symptoms or irritability or cognitive disturbances often show a remarkable improvement when given antibiotic therapy. If the psychological symptoms persist or if the initial symptoms are severe, it is very important to consult with a psychiatrist to evaluate how best to treat these symptoms apart from the antibiotic therapy. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated. Treatment of the psychiatric symptoms at that point would require anti-depressant or anti-anxiety medications or psychotherapy."

 

 

I find this interesting. Maybe that's why some of our kids get better when treated right away with abx, and others go chronic. MAybe since the immune system was activated so long that the neurotransmitters functioning is "changed" and no amount of abx will help. Maybe these are the kids who really DO need a "start low and go slow" dose of SSRI's???

 

 

Okay, next quote:

 

"A blood test may be positive for several reasons. First, the positive test may indicate that the person was infected previously by the agent of Lyme disease and the immune system mounted a successful attack which resulted in the long-term production of antibodies against the agent of Lyme disease. That's why tests can stay positive for months to years, even when active infection is no longer present. "

 

I often wonder about strep titers, and how some kids' stay high for so long, even after long abx treatment. Also myco p, etc.....

 

 

 

. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated.

 

Just because the immune system is no longer activated by an infection doesn't mean that all auto-antibodies produced by the infection are gone.

[T_Mom]

 

...I find this interesting. Maybe that's why some of our kids get better when treated right away with abx, and others go chronic. MAybe since the immune system was activated so long that the neurotransmitters functioning is "changed" and no amount of abx will help. Maybe these are the kids who really DO need a "start low and go slow" dose of SSRI's???

 

 

 

 

Elijomom,in the paradigm of PANS, the immune modulating therapies when used effectively (IVIG and plasmapheresis) interrupt and break the "cycle" of reaction--so that the 'chronic' reaction is stopped by using the bigger gun (bigger and more effective than abx that is--)

 

I believe the PANS researchers would agree that the immune modulating therapies are the big guns for the autoimmune reaction of out of control PANS.

SSRI's may have a similar immune modulating effect certainly. Here are a couple of earlier discussions on the immune modulating effects of SSRIs...

 

http://www.latitudes.org/forums/index.php?showtopic=6667&st=0&p=52788&hl=+immune%20+modulating%20+effect%20+ssri&fromsearch=1entry52788

 

 

http://www.latitudes.org/forums/index.php?showtopic=9390&st=0&p=78781&hl=+immune%20+modulating%20+effect%20+ssri&fromsearch=1entry78781

Edited March 11, 2012 by T.Mom

[PowPow]

I just happened to click on a link that someone posted in a thread about the corinth girl being treated for Lyme. It was Columbia's website (where I believe Brian Fallon is....he's a lyme specialist who researches neuro. lyme, etc..). However, I am seeing these statements AS THEY RELATE TO PANDAS/PANS/PITAND, and not necessarily to Lyme...

 

So I am going to paste a few statements that were in the Frequently Asked Questions sections---these were replies from Columbia. It got me thinking some things...which I will elaborate on after the quotes:

 

"The cause of the psychological symptoms in Lyme disease is unclear. It is clear that patients with acute Lyme disease who develop new onset depressive symptoms or irritability or cognitive disturbances often show a remarkable improvement when given antibiotic therapy. If the psychological symptoms persist or if the initial symptoms are severe, it is very important to consult with a psychiatrist to evaluate how best to treat these symptoms apart from the antibiotic therapy. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated. Treatment of the psychiatric symptoms at that point would require anti-depressant or anti-anxiety medications or psychotherapy."

 

 

I find this interesting. Maybe that's why some of our kids get better when treated right away with abx, and others go chronic. MAybe since the immune system was activated so long that the neurotransmitters functioning is "changed" and no amount of abx will help. Maybe these are the kids who really DO need a "start low and go slow" dose of SSRI's???

 

 

Okay, next quote:

 

"A blood test may be positive for several reasons. First, the positive test may indicate that the person was infected previously by the agent of Lyme disease and the immune system mounted a successful attack which resulted in the long-term production of antibodies against the agent of Lyme disease. That's why tests can stay positive for months to years, even when active infection is no longer present. "

 

I often wonder about strep titers, and how some kids' stay high for so long, even after long abx treatment. Also myco p, etc.....

 

 

 

. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated.

 

Just because the immune system is no longer activated by an infection doesn't mean that all auto-antibodies produced by the infection are gone.

 

You hit the nail right on the head, Lauren K!! Thanks for putting this in such clear words

 

So what do you think we can do about this?

Stick with treatment for auto-antibodies? That where we have the most success- IV steroids, pex--

 

I have a child in each category-- one who is "chronic" as eljomom said and one who "got better" (mostly

[sf_mom]

Or the infection has persisted even after antibiotic therapies.

 

Attached is a recently published study regarding persistent Lyme...... the article describes two experiments using a nonhuman primate model (Rhesus Macaques) that suggest that Borrelia burgdorferi can persist even if the primates are given aggressive antibiotic therapy.

 

There is lively interchange in which Phillip Baker, former NIH head of Lyme funding engages in a discussion of this article in the comments section. Its all very insightful.

 

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-was-this-important-lyme-study-hidden-for-12-years.html

 

Hopefully the new Lyme Culture test will put "some" of the persist Lyme debate to rest. It appears it will be a very effective tool when stopping antibiotics and we plan to use it with our family.

Edited March 12, 2012 by SF Mom

[philamom]

Our LLMD always said that a persistent active Bb infection was driving dd's continous positive WB IGM (negative IgG) for over a year. That proved to be true in our case - she recently cultured positive with the new lyme test.

Edited March 12, 2012 by philamom