Re: Re: New with PANDAS questions!

[Guest guest]

Other than the fact that it's completely ruined our lives and I'd gladly take my son back exactly the way he was 2 years ago PRE PANDAS in a heartbeat, autism and all. Autism alone was a piece of cake for us compared to Autism + PANDAS.

We've done so much and gotten no relief, no improvement. He just keeps getting worse

Kerrie

Does anyone have PANDAS experience they can share?

[Guest guest]

Christel,

We've used OLE, zithro, omnicef, rotated zithro and omnicef, IM Bicillin, and 15 IVIG treatments.

I think we even have our big name DAN stumped. I can be on the phone with him and get dead silence, and then "hmmmm....yeah....I'm trying to think of what to try next....hmmmmm....uh....."

It's scary

Kerrie

one thing I have realized this year, is that PANDAS is tricky and quicklycan mutate. the first few rounds we had ONLY reacted to OLE, Tried 3 roundsof the zithromax) the next few ONLY to zithromyacin, (tried the OLE and itdidn't work)then we did clyamindamiacin and got great results! went off tonot be resistant to it, *doing biofilm protical, and went back tozithromyacin BOOM 2 days off clymindamicin, we have a flare and zithrodidn't touch it, infact he did better OFF of it! put in OLE it helped SOMEbut didn't get rid of it. so we are now going to do pulseing ofantibiotics! can you list what you have tried, and are those things thatwere used anti wise in the PAST for other things; perhaps you have alsoseen some mutations that are requiring bigger guns!

[Guest guest]

I don't know about the dose but we weren't doing 2mg/kg that's for sure. Our dosage was prescribed by Dr. Gupta at UC Irvine. We could barely afford what we were giving him, no way to afford 2 mg/kg. We couldn't get insurance coverage.

Kerrie

My understanding is double ivig, that is 2mg/kg as opposed to 1mg/kg treats pandas. zythromax or other antibiotics can help you avoid catching the strep virus, but ivig reverses the damage.Can someone weigh in on this?Steph

[Guest guest]

one thing I have realized this year, is that PANDAS is tricky and quickly

can mutate. the first few rounds we had ONLY reacted to OLE, Tried 3 rounds

of the zithromax) the next few ONLY to zithromyacin, (tried the OLE and it

didn't work)then we did clyamindamiacin and got great results! went off to

not be resistant to it, *doing biofilm protical, and went back to

zithromyacin BOOM 2 days off clymindamicin, we have a flare and zithro

didn't touch it, infact he did better OFF of it! put in OLE it helped SOME

but didn't get rid of it. so we are now going to do pulseing of

antibiotics! can you list what you have tried, and are those things that

were used anti wise in the PAST for other things; perhaps you have also

seen some mutations that are requiring bigger guns!

Original Message:

-----------------

From: ratlenhum@...

Date: Sat, 5 Sep 2009 13:50:39 EDT

To: mb12 valtrex

Subject: Re: Re: New with PANDAS questions!

Other than the fact that it's completely ruined our lives and I'd gladly

take my son back exactly the way he was 2 years ago PRE PANDAS in a

heartbeat, autism and all. Autism alone was a piece of cake for us

compared to

Autism + PANDAS.

We've done so much and gotten no relief, no improvement. He just keeps

getting worse

Kerrie

In a message dated 9/4/2009 11:49:46 P.M. Eastern Daylight Time,

stephanieweeks@... writes:

Does anyone have PANDAS experience they can share?

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[Guest guest]

My understanding is double ivig, that is 2mg/kg as opposed to 1mg/kg treats pandas. zythromax or other antibiotics can help you avoid catching the strep virus, but ivig reverses the damage.Can someone weigh in on this?StephTo: mb12 valtrex From: christelking1@...Date: Mon, 7 Sep 2009 16:59:48 -0400Subject: Re: Re: New with PANDAS questions!

one thing I have realized this year, is that PANDAS is tricky and quickly

can mutate. the first few rounds we had ONLY reacted to OLE, Tried 3 rounds

of the zithromax) the next few ONLY to zithromyacin, (tried the OLE and it

didn't work)then we did clyamindamiacin and got great results! went off to

not be resistant to it, *doing biofilm protical, and went back to

zithromyacin BOOM 2 days off clymindamicin, we have a flare and zithro

didn't touch it, infact he did better OFF of it! put in OLE it helped SOME

but didn't get rid of it. so we are now going to do pulseing of

antibiotics! can you list what you have tried, and are those things that

were used anti wise in the PAST for other things; perhaps you have also

seen some mutations that are requiring bigger guns!

Original Message:

-----------------

From: ratlenhumaol

Date: Sat, 5 Sep 2009 13:50:39 EDT

To: mb12 valtrex

Subject: Re: Re: New with PANDAS questions!

Other than the fact that it's completely ruined our lives and I'd gladly

take my son back exactly the way he was 2 years ago PRE PANDAS in a

heartbeat, autism and all. Autism alone was a piece of cake for us

compared to

Autism + PANDAS.

We've done so much and gotten no relief, no improvement. He just keeps

getting worse

Kerrie

In a message dated 9/4/2009 11:49:46 P.M. Eastern Daylight Time,

stephanieweeksymail writes:

Does anyone have PANDAS experience they can share?

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[Guest guest]

PANDAS doesn't actually mean you have strep, it can mean the body is

reacting to something it THINKS is strep and flare attacking brain, lungs,

and heart! i know whwen we used strep line probiotics we saw an INSTANT

flare! we have done testing on and off strep line probiotics and had an

aspie friend of ours do the same, we have had 80 plus families report the

same experience~

Original Message:

-----------------

From: ratlenhum@...

Date: Mon, 7 Sep 2009 17:17:45 EDT

To: mb12 valtrex

Subject: Re: Re: New with PANDAS questions!

I don't know about the dose but we weren't doing 2mg/kg that's for sure.

Our dosage was prescribed by Dr. Gupta at UC Irvine. We could barely

afford

what we were giving him, no way to afford 2 mg/kg. We couldn't get

insurance coverage.

Kerrie

In a message dated 9/7/2009 5:14:49 P.M. Eastern Daylight Time,

stephaniejbuckley@... writes:

My understanding is double ivig, that is 2mg/kg as opposed to 1mg/kg

treats pandas. zythromax or other antibiotics can help you avoid catching

the

strep virus, but ivig reverses the damage.

Can someone weigh in on this?

Steph

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[Guest guest]

you could propose clymindamiacin and see if that one would give some

relief, others have noted things like lycine, EDTA (breaking down the

biofilms to get it better) in combo with an antibiotic, LDN as well KEEP us

from crashes up till recently!

Original Message:

-----------------

From: ratlenhum@...

Date: Mon, 7 Sep 2009 17:08:00 EDT

To: mb12 valtrex

Subject: Re: Re: New with PANDAS questions!

Christel,

We've used OLE, zithro, omnicef, rotated zithro and omnicef, IM

Bicillin, and 15 IVIG treatments.

I think we even have our big name DAN stumped. I can be on the phone with

him and get dead silence, and then " hmmmm....yeah....I'm trying to think of

what to try next....hmmmmm....uh..... "

It's scary

Kerrie

In a message dated 9/7/2009 5:00:35 P.M. Eastern Daylight Time,

christelking1@... writes:

one thing I have realized this year, is that PANDAS is tricky and quickly

can mutate. the first few rounds we had ONLY reacted to OLE, Tried 3 rounds

of the zithromax) the next few ONLY to zithromyacin, (tried the OLE and it

didn't work)then we did clyamindamiacin and got great results! went off to

not be resistant to it, *doing biofilm protical, and went back to

zithromyacin BOOM 2 days off clymindamicin, we have a flare and zithro

didn't touch it, infact he did better OFF of it! put in OLE it helped SOME

but didn't get rid of it. so we are now going to do pulseing of

antibiotics! can you list what you have tried, and are those things that

were used anti wise in the PAST for other things; perhaps you have also

seen some mutations that are requiring bigger guns!

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100126575x1222846709x1201493018/aol?redir=htt

p://www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=115 & bcd

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[Guest guest]

You don't know how glad I am to find someone with autism and PANDAS!I don't have tics or Tourette's,but I do have a history of a more severe form of autism, with recurring regression all triggered by bacterial infection,strep and otherwise.I also have a history of rheumatic fever,and rheumatic heart disease.The latter appears to be getting worse.What I have always found so frustrating,is there is no documentation,of PANDAS or PITAND with autism,and nobody talks about the symptoms lasting into adulthood,with the severity they were in childhood. Subject: Re: Re: New with PANDAS questions!To: mb12 valtrex Date: Saturday, September 5, 2009, 11:50 AM

Other than the fact that it's completely ruined our lives and I'd gladly take my son back exactly the way he was 2 years ago PRE PANDAS in a heartbeat, autism and all. Autism alone was a piece of cake for us compared to Autism + PANDAS.

We've done so much and gotten no relief, no improvement. He just keeps getting worse

Kerrie

In a message dated 9/4/2009 11:49:46 P.M. Eastern Daylight Time, stephanieweeks@ ymail.com writes:

Does anyone have PANDAS experience they can share?