Re: Antivirals for PITANDS/PANDAS

[Guest guest]

Natasa, thanks very much! Time for me to do some digging on this. So glad you mentioned it as it sounds like it may be a viable adjunct for us since he's had no difficulty in the past taking meds with an antihistamine action.To: mb12 valtrex Sent: Mon, November 15, 2010 10:03:21 AMSubject: Re: Antivirals for PITANDS/PANDAS

hi Gayle, going through PANDAS symptoms checklist (to make it easier

* Cognitive inflexibility, difficult to reason with, as if stuck on

an idea: GREATLY IMPROVED!- much more more flexible/mellow, most times

now able to let go after shorter period of arguing. Even talks about

doing novel things - rarely actually does them but one step at the time

)

* Obsessive/repetitive/compulsive argumentative behaviours:

considerably reduced. I'd say most of obsessions gone down 70-90%,

apart from one (biggest of the recent times) which has reduced let's say

30-40% There is less of a 'mad' look when he talks about it, able to

bring in some humour into it and even, at times, control himself.

Fingers xed!

* TICS (repetitive vocalisations of body movements) - never was

there really

* Tourettes Syndrome - never there

* Attention deficits - GREATLY reduced. Still gets tired and drifts

off much more than 'typical' kids but noticable change. Will do longer

periods of unsupported work at school since starting.

* oppositional/defiant behaviours - GREATLY reduced, see first *

one teaspoon x2 a day, started about a month ago.

must add that we started Movicol shortly before, could have some add-on

benefits as better bm (he did have periods of good bm's in the past,

which wasn't followed by improved behaviours, so doubt it, but still a

possibility)

> >

> >

> > Â

> >

> > I have two children dx with PITANDS and they doctor wants to try

> Valtrex to help them as it crosses the blood-brain barrier. The

problem

> is that I can't afford the medication. Is there another antiviral med

> that will cross the blood-brain barrier or something natural that will

> help? We have tried OLE but they can oly take 500 mg in the morning

and

> 250 mg at lunch and dinner. If I go any higher they have weird side

> effects. I could really use some advice.

> >

> > Thanks

> >

>

[Guest guest]



welcome to autism, it's many of the things you have to fight to return the immune system back to normal

sadly

Re: Antivirals for PITANDS/PANDAS

Cheryl, My son is on Diflucan ... I've heard that anti- fungals kick up bacteria... Will this affect the strep? I am so confused.. My poor baby .. All this crap he has to go thru.. Overgrowth of yeast, bacteria... Possibly a virus... Sent from my iPhone

No, you're attempt at Valtrex has nothing to do with PANDAS. If you have PANDAS kid, it was there before you tried Valtrex. Valtrex is an antiviral, PANDAS is an overproduction of strep (a bacteria) antibodies.

Cheryl

~http://www.gryffins-tail.blogspot.com

~@midian42~

Cheryl,

My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...

Sent from my iPhone

While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x).

Cheryl

~http://www.gryffins-tail.blogspot.com

~@midian42~

I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice.Thanks

[Guest guest]

natasa that also goes hand in hand with th1 and th2 irregulations. LDN is very effective in addressing that

Re: Antivirals for PITANDS/PANDAS

We had plenty PANDAS symptoms, all apart from tics. Strep has not beenpicked up by the tests, all markers negative (there is of course a smallchance that tests just missed it..)Recently all our son's PANDAS symptoms have been greatly reducedrecently by Ketotifen. It is an rx antiallergic/antihistamine med withsecondary effect on adrenergic system. I have a 'hunch' that most of hisPANDAS-like symptoms here were/are actually being caused by messed upandrenergic systems.Just something else to consider if strep-tests come back negative (oreven positive)Natasa>>> Â >> I have two children dx with PITANDS and they doctor wants to tryValtrex to help them as it crosses the blood-brain barrier. The problemis that I can't afford the medication. Is there another antiviral medthat will cross the blood-brain barrier or something natural that willhelp? We have tried OLE but they can oly take 500 mg in the morning and250 mg at lunch and dinner. If I go any higher they have weird sideeffects. I could really use some advice.>> Thanks>

[Guest guest]

I called our pharmacist whose been watching my son's journey for 5 years and asked her about Ketotifen. She tells me that other than in eye drop form, it's not available as best she can tell. This brings me back to LDN again. Got to find a way to try LDN and minimize herx potential. Any advice on that, Christel? To: mb12 valtrex Sent: Mon, November 15, 2010 9:51:49 PMSubject: Re: Re: Antivirals for PITANDS/PANDAS

natasa that also goes hand in hand with th1 and th2 irregulations. LDN is very effective in addressing that

Re: Antivirals for PITANDS/PANDAS

We had plenty PANDAS symptoms, all apart from tics. Strep has not beenpicked up by the tests, all markers negative (there is of course a smallchance that tests just missed it..)Recently all our son's PANDAS symptoms have been greatly reducedrecently by Ketotifen. It is an rx antiallergic/antihistamine med withsecondary effect on adrenergic system. I have a 'hunch' that most of hisPANDAS-like symptoms here were/are actually being caused by messed upandrenergic systems.Just something else to consider if strep-tests come back negative (oreven positive)Natasa>>> Â >> I have two children dx with PITANDS and they doctor wants to tryValtrex to help them as it crosses the blood-brain barrier. The problemis that I can't afford the medication. Is there another antiviral medthat will cross the blood-brain barrier or something natural that willhelp? We have tried OLE but they can oly take 500 mg in the morning and250 mg at lunch and dinner. If I go any higher they have weird sideeffects. I could really use some advice.>> Thanks>

[Guest guest]

We found that Imunovir worked better for our son I would try LDN first since it's cheaper and available in the US. If it does not work I would reseach and try Imunovir. It is approved in 48 countries except the US.......it is made in Ireland and you can get it with a script from Rives Pharma in CanadaSubject: Re: Re: Antivirals for PITANDS/PANDASTo: mb12 valtrex Date: Monday, November 15, 2010, 10:23 PM

I called our pharmacist whose been watching my son's journey for 5 years and asked her about Ketotifen. She tells me that other than in eye drop form, it's not available as best she can tell. This brings me back to LDN again. Got to find a way to try LDN and minimize herx potential. Any advice on that, Christel? To: mb12 valtrex Sent: Mon, November 15, 2010 9:51:49 PMSubject: Re: Re: Antivirals for PITANDS/PANDAS

natasa that also goes hand in hand with th1 and th2 irregulations. LDN is very effective in addressing that

Re: Antivirals for PITANDS/PANDAS

We had plenty PANDAS symptoms, all apart from tics. Strep has not beenpicked up by the tests, all markers negative (there is of course a smallchance that tests just missed it..)Recently all our son's PANDAS symptoms have been greatly reducedrecently by Ketotifen. It is an rx antiallergic/antihistamine med withsecondary effect on adrenergic system. I have a 'hunch' that most of hisPANDAS-like symptoms here were/are actually being caused by messed upandrenergic systems.Just something else to consider if strep-tests come back negative (oreven positive)Natasa>>> Â >> I have two children dx with PITANDS and they doctor wants to tryValtrex to help them as it crosses the blood-brain barrier. The problemis that I can't afford the medication. Is there another antiviral medthat will cross the blood-brain barrier or something natural that willhelp? We have tried OLE but they can oly take 500 mg in the morning and250 mg at lunch and dinner. If I go any higher they have weird sideeffects. I could really use some advice.>> Thanks>

[Guest guest]

LDN only scratched the surface for us. It was good but brought nowhere

near the level of improvements we are seeing now. - it was ages ago

though, when ds was more severe

But I would not touch LDN with a barge pole now because of bad

experience when trying to get off it - three attempts, regressions,

seizures... I know it is rare, but was all too risky in our son's case.

Natasa

> >

> >

> > Â

> >

> > I have two children dx with PITANDS and they doctor wants to try

> Valtrex to help them as it crosses the blood-brain barrier. The

problem

> is that I can't afford the medication. Is there another antiviral

med

> that will cross the blood-brain barrier or something natural that

will

> help? We have tried OLE but they can oly take 500 mg in the morning

and

> 250 mg at lunch and dinner. If I go any higher they have weird side

> effects. I could really use some advice.

> >

> > Thanks

> >

>

[Guest guest]

that is not true - are you in US? I know several people there use it in

liquid form, not sure of the make. The one we get here is Zaditen

Elixir, think it is from South Africa...

Natasa

> >>

> >>

> >> Â

> >>

> >> I have two children dx with PITANDS and they doctor wants to try

> >Valtrex to help them as it crosses the blood-brain barrier. The

problem

> >is that I can't afford the medication. Is there another antiviral

med

> >that will cross the blood-brain barrier or something natural that

will

> >help? We have tried OLE but they can oly take 500 mg in the

morning and

> >250 mg at lunch and dinner. If I go any higher they have weird

side

> >effects. I could really use some advice.

> >>

> >> Thanks

> >>

> >

> >

>

[Guest guest]



start slow and get a script~!

Re: Antivirals for PITANDS/PANDAS

We had plenty PANDAS symptoms, all apart from tics. Strep has not beenpicked up by the tests, all markers negative (there is of course a smallchance that tests just missed it..)Recently all our son's PANDAS symptoms have been greatly reducedrecently by Ketotifen. It is an rx antiallergic/antihistamine med withsecondary effect on adrenergic system. I have a 'hunch' that most of hisPANDAS-like symptoms here were/are actually being caused by messed upandrenergic systems.Just something else to consider if strep-tests come back negative (oreven positive)Natasa>>> Â >> I have two children dx with PITANDS and they doctor wants to tryValtrex to help them as it crosses the blood-brain barrier. The problemis that I can't afford the medication. Is there another antiviral medthat will cross the blood-brain barrier or something natural that willhelp? We have tried OLE but they can oly take 500 mg in the morning and250 mg at lunch and dinner. If I go any higher they have weird sideeffects. I could really use some advice.>> Thanks>

[Guest guest]

what dose did you do? I have heard of this with kids at too high a dose but not heard much at low doses. with PANDAS kids I am hearing best results at a 1-2 line marker instead of the 5 lines

Re: Antivirals for PITANDS/PANDAS

LDN only scratched the surface for us. It was good but brought nowherenear the level of improvements we are seeing now. - it was ages agothough, when ds was more severeBut I would not touch LDN with a barge pole now because of badexperience when trying to get off it - three attempts, regressions,seizures... I know it is rare, but was all too risky in our son's case.Natasa> >> >> > Â> >> > I have two children dx with PITANDS and they doctor wants to try> Valtrex to help them as it crosses the blood-brain barrier. Theproblem> is that I can't afford the medication. Is there another antiviralmed> that will cross the blood-brain barrier or something natural thatwill> help? We have tried OLE but they can oly take 500 mg in the morningand> 250 mg at lunch and dinner. If I go any higher they have weird side> effects. I could really use some advice.> >> > Thanks> >>

[Guest guest]

in the states we do transdermal

Re: Antivirals for PITANDS/PANDAS

that is not true - are you in US? I know several people there use it inliquid form, not sure of the make. The one we get here is ZaditenElixir, think it is from South Africa...Natasa> >>> >>> >> Â> >>> >> I have two children dx with PITANDS and they doctor wants to try> >Valtrex to help them as it crosses the blood-brain barrier. Theproblem> >is that I can't afford the medication. Is there another antiviralmed> >that will cross the blood-brain barrier or something natural thatwill> >help? We have tried OLE but they can oly take 500 mg in themorning and> >250 mg at lunch and dinner. If I go any higher they have weirdside> >effects. I could really use some advice.> >>> >> Thanks> >>> >> >>

[Guest guest]

I meant ketotifen, not LDN

> > >>

> > >>

> > >> Ã,

> > >>

> > >> I have two children dx with PITANDS and they doctor wants to

try

> > >Valtrex to help them as it crosses the blood-brain barrier. The

> problem

> > >is that I can't afford the medication. Is there another antiviral

> med

> > >that will cross the blood-brain barrier or something natural that

> will

> > >help? We have tried OLE but they can oly take 500 mg in the

> morning and

> > >250 mg at lunch and dinner. If I go any higher they have weird

> side

> > >effects. I could really use some advice.

> > >>

> > >> Thanks

> > >>

> > >

> > >

> >

>

[Guest guest]

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,

over it was VERY bad.

> > >

> > >

> > > Â

> > >

> > > I have two children dx with PITANDS and they doctor wants to try

> > Valtrex to help them as it crosses the blood-brain barrier. The

> problem

> > is that I can't afford the medication. Is there another antiviral

> med

> > that will cross the blood-brain barrier or something natural that

> will

> > help? We have tried OLE but they can oly take 500 mg in the

morning

> and

> > 250 mg at lunch and dinner. If I go any higher they have weird

side

> > effects. I could really use some advice.

> > >

> > > Thanks

> > >

> >

>

[Guest guest]

Natasa, could you ask someone you know in the US whose using it what the make or name of it is or can you give me a suggestion as to how I can find this? Many thanks to you.To: mb12 valtrex Sent: Tue, November 16, 2010 7:55:12 AMSubject: Re: Re: Antivirals

for PITANDS/PANDAS

in the states we do transdermal

Re: Antivirals for PITANDS/PANDAS

that is not true - are you in US? I know several people there use it inliquid form, not sure of the make. The one we get here is ZaditenElixir, think it is from South Africa...Natasa> >>> >>> >> Â> >>> >> I have two children dx with PITANDS and they doctor wants to try> >Valtrex to help them as it crosses the blood-brain barrier. Theproblem> >is that I can't afford the medication. Is there another antiviralmed> >that will cross the blood-brain barrier or something natural thatwill> >help? We have tried OLE but they can oly take 500 mg in themorning and> >250 mg at lunch and dinner. If I go any higher they have weirdside> >effects. I could really use some advice.> >>> >> Thanks> >>> >> >>

[Guest guest]

that is consistant in what I am finding is helpful with the PANDAS kids

Re: Antivirals for PITANDS/PANDAS

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,over it was VERY bad.> > >> > >> > > Â> > >> > > I have two children dx with PITANDS and they doctor wants to try> > Valtrex to help them as it crosses the blood-brain barrier. The> problem> > is that I can't afford the medication. Is there another antiviral> med> > that will cross the blood-brain barrier or something natural that> will> > help? We have tried OLE but they can oly take 500 mg in themorning> and> > 250 mg at lunch and dinner. If I go any higher they have weirdside> > effects. I could really use some advice.> > >> > > Thanks> > >> >>

[Guest guest]

that is consistant in what I am finding is helpful with the PANDAS kids

Re: Antivirals for PITANDS/PANDAS

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,over it was VERY bad.> > >> > >> > > Â> > >> > > I have two children dx with PITANDS and they doctor wants to try> > Valtrex to help them as it crosses the blood-brain barrier. The> problem> > is that I can't afford the medication. Is there another antiviral> med> > that will cross the blood-brain barrier or something natural that> will> > help? We have tried OLE but they can oly take 500 mg in themorning> and> > 250 mg at lunch and dinner. If I go any higher they have weirdside> > effects. I could really use some advice.> > >> > > Thanks> > >> >>

[Guest guest]

that is consistant in what I am finding is helpful with the PANDAS kids

Re: Antivirals for PITANDS/PANDAS

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,over it was VERY bad.> > >> > >> > > Â> > >> > > I have two children dx with PITANDS and they doctor wants to try> > Valtrex to help them as it crosses the blood-brain barrier. The> problem> > is that I can't afford the medication. Is there another antiviral> med> > that will cross the blood-brain barrier or something natural that> will> > help? We have tried OLE but they can oly take 500 mg in themorning> and> > 250 mg at lunch and dinner. If I go any higher they have weirdside> > effects. I could really use some advice.> > >> > > Thanks> > >> >>

[Guest guest]

What line markers are you talking about please??

To: mb12 valtrex Sent: Tue, November 16, 2010 6:39:02 AMSubject: Re: Re: Antivirals for PITANDS/PANDAS

that is consistant in what I am finding is helpful with the PANDAS kids

Re: Antivirals for PITANDS/PANDAS

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,over it was VERY bad.> > >> > >> > > Â> > >> > > I have two children dx with PITANDS and they doctor wants to try> > Valtrex to help them as it crosses the blood-brain barrier. The> problem> > is that I can't afford the medication. Is there another antiviral> med> > that will cross the blood-brain barrier or something natural that> will> > help? We have tried OLE but they can oly take 500 mg in themorning> and> > 250 mg at lunch and dinner. If I go any higher they have weirdside> > effects. I could really use some advice.> > >> > >

Thanks> > >> >>

[Guest guest]

perhaps what we think of as " PANDAS kids " needs to be talked over and

reformulated ...

> > > >

> > > >

> > > > Â

> > > >

> > > > I have two children dx with PITANDS and they doctor wants to

try

> > > Valtrex to help them as it crosses the blood-brain barrier. The

> > problem

> > > is that I can't afford the medication. Is there another

antiviral

> > med

> > > that will cross the blood-brain barrier or something natural

that

> > will

> > > help? We have tried OLE but they can oly take 500 mg in the

> morning

> > and

> > > 250 mg at lunch and dinner. If I go any higher they have weird

> side

> > > effects. I could really use some advice.

> > > >

> > > > Thanks

> > > >

> > >

> >

>

[Guest guest]



it's how LDN is dosed, it comes in a cream you put on the skin, it has lines that divide it up, most often it's perscribed at 5 lines a night, but I am seeing PANDAS most successful over the years at 2 not 5 being the magic line number to work best so far

Re: Antivirals for PITANDS/PANDAS

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,over it was VERY bad.> > >> > >> > > Â> > >> > > I have two children dx with PITANDS and they doctor wants to try> > Valtrex to help them as it crosses the blood-brain barrier. The> problem> > is that I can't afford the medication. Is there another antiviral> med> > that will cross the blood-brain barrier or something natural that> will> > help? We have tried OLE but they can oly take 500 mg in themorning> and> > 250 mg at lunch and dinner. If I go any higher they have weirdside> > effects. I could really use some advice.> > >> > > Thanks> > >> >>

[Guest guest]

meaning what?

Re: Antivirals for PITANDS/PANDAS

perhaps what we think of as "PANDAS kids" needs to be talked over andreformulated ...> > > >> > > >> > > > Â> > > >> > > > I have two children dx with PITANDS and they doctor wants totry> > > Valtrex to help them as it crosses the blood-brain barrier. The> > problem> > > is that I can't afford the medication. Is there anotherantiviral> > med> > > that will cross the blood-brain barrier or something naturalthat> > will> > > help? We have tried OLE but they can oly take 500 mg in the> morning> > and> > > 250 mg at lunch and dinner. If I go any higher they have weird> side> > > effects. I could really use some advice.> > > >> > > > Thanks> > > >> > >> >>

[Guest guest]

We do 1 line and it is phenomenalSent from my iPhone



it's how LDN is dosed, it comes in a cream you put on the skin, it has lines that divide it up, most often it's perscribed at 5 lines a night, but I am seeing PANDAS most successful over the years at 2 not 5 being the magic line number to work best so far

Re: Antivirals for PITANDS/PANDAS

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,over it was VERY bad.> > >> > >> > > Â> > >> > > I have two children dx with PITANDS and they doctor wants to try> > Valtrex to help them as it crosses the blood-brain barrier. The> problem> > is that I can't afford the medication. Is there another antiviral> med> > that will cross the blood-brain barrier or something natural that> will> > help? We have tried OLE but they can oly take 500 mg in themorning> and> > 250 mg at lunch and dinner. If I go any higher they have weirdside> > effects. I could really use some advice.> > >> > > Thanks> > >> >>

[Guest guest]

We do 1 line and it is phenomenalSent from my iPhone



it's how LDN is dosed, it comes in a cream you put on the skin, it has lines that divide it up, most often it's perscribed at 5 lines a night, but I am seeing PANDAS most successful over the years at 2 not 5 being the magic line number to work best so far

Re: Antivirals for PITANDS/PANDAS

yes, we had to stay at 2-2.5 lines the whole time. Under it was bad,over it was VERY bad.> > >> > >> > > Â> > >> > > I have two children dx with PITANDS and they doctor wants to try> > Valtrex to help them as it crosses the blood-brain barrier. The> problem> > is that I can't afford the medication. Is there another antiviral> med> > that will cross the blood-brain barrier or something natural that> will> > help? We have tried OLE but they can oly take 500 mg in themorning> and> > 250 mg at lunch and dinner. If I go any higher they have weirdside> > effects. I could really use some advice.> > >> > > Thanks> > >> >>

[Guest guest]

.... in the light of " PANDAS " symptoms being massively reduced by an

unrelated medicine with antihistamine and antiandrenergic action...

meaning that in some/many kids what we think as " PANDAS " is something

else entirely....

Natasa

> > > > >

> > > > >

> > > > > Â

> > > > >

> > > > > I have two children dx with PITANDS and they doctor wants to

> try

> > > > Valtrex to help them as it crosses the blood-brain barrier.

The

> > > problem

> > > > is that I can't afford the medication. Is there another

> antiviral

> > > med

> > > > that will cross the blood-brain barrier or something natural

> that

> > > will

> > > > help? We have tried OLE but they can oly take 500 mg in the

> > morning

> > > and

> > > > 250 mg at lunch and dinner. If I go any higher they have weird

> > side

> > > > effects. I could really use some advice.

> > > > >

> > > > > Thanks

> > > > >

> > > >

> > >

> >

>

[Guest guest]

.... in the light of " PANDAS " symptoms being massively reduced by an

unrelated medicine with antihistamine and antiandrenergic action...

meaning that in some/many kids what we think as " PANDAS " is something

else entirely....

Natasa

> > > > >

> > > > >

> > > > > Â

> > > > >

> > > > > I have two children dx with PITANDS and they doctor wants to

> try

> > > > Valtrex to help them as it crosses the blood-brain barrier.

The

> > > problem

> > > > is that I can't afford the medication. Is there another

> antiviral

> > > med

> > > > that will cross the blood-brain barrier or something natural

> that

> > > will

> > > > help? We have tried OLE but they can oly take 500 mg in the

> > morning

> > > and

> > > > 250 mg at lunch and dinner. If I go any higher they have weird

> > side

> > > > effects. I could really use some advice.

> > > > >

> > > > > Thanks

> > > > >

> > > >

> > >

> >

>

[Guest guest]

there are defining lines with PANDAS< if things like antihistamines are effecting it, it wouldn't be PANDAS related as it's not an allergy therefor wouldn't be cured with something like that. PANDAS is also backed with titers. that go up and down with treatment, I would not guess that in situations you discribed that titers would fit into that

Re: Antivirals for PITANDS/PANDAS

.... in the light of "PANDAS" symptoms being massively reduced by anunrelated medicine with antihistamine and antiandrenergic action... meaning that in some/many kids what we think as "PANDAS" is somethingelse entirely....Natasa> > > > >> > > > >> > > > > Â> > > > >> > > > > I have two children dx with PITANDS and they doctor wants to> try> > > > Valtrex to help them as it crosses the blood-brain barrier.The> > > problem> > > > is that I can't afford the medication. Is there another> antiviral> > > med> > > > that will cross the blood-brain barrier or something natural> that> > > will> > > > help? We have tried OLE but they can oly take 500 mg in the> > morning> > > and> > > > 250 mg at lunch and dinner. If I go any higher they have weird> > side> > > > effects. I could really use some advice.> > > > >> > > > > Thanks> > > > >> > > >> > >> >>