Re: An evening in Chicago (Conference Report #1)

[Guest guest]

Stan, thank you for the updates and thoughts about the DAN conference.

I have been doing biomedical intervention on my Ethan for close to two

years now and so far, it's the Valtrex therapy that's giving me the

greatest hope that he will be recovered. We are onto our 40th day of

Valtrex and everyday is a breakthrough day for Ethan. He is starting

to communicate in sentences for the first time since 2002 (that's when

all his words disappeared). We recently watched Ice Age 2 and for the

first time again, he sat throughout the preview up till the closing

credits. He seems to be very alert since we started Valtrex.

I don't think we could have gone this far it weren't for this group.

All your good experiences and inputs helped me make one of the best

decisions --that is to give Valtrex a shot.

Keep up the good work, Stan!!!

A.

>

> It's after midnight and my delayed flight home caused me to miss a

connection, so now I'm

> sitting in my room at the Crown Royal with a glass of wine while I

start to assemble my

> thoughts after the DAN! Conference. I have lots to share.

>

> I started putting in one long letter, but I know if I continue to

try to fit everything in one

> document it will surely never be completed with the detail that I

would like and ultimately

> it might never be published so I thought I would just start writing

and see where we go.

>

> I feel really good about all that was accomplished for MB12 Nasal

Spray and Antiviral

> treatments this week. Here were some of the highlights.

>

> I presented both days at the DAN! Think Tank, which is a relatively

small and sought after

> group of invited leading DAN! doctors and researchers who speak

about the latest

> research in autism.

>

> The first day was moderated by Dr. Jacquelyn McCandless. She had

invited me to speak

> about antiviral therapy along with her and Dr. Sid Baker. I don't

know of a parent that has

> spoken at a DAN! Think Tank before, so speaking along side of Dr JM

and Dr Sid Baker

> first felt like one of those " Now what doesn't belong in this

picture " excercise at our

> preschool, but it turned out great.

>

> My talk was about our group, how many people respond to the therapy,

how many people

> get the rashes, what we suspect they are (metals excretion), what

the regression looks like

> and how long it lasts. I also talked about the mercury vapor

testing we did on teeth and

> the rashes. I talked about how we see fungal flairs when we treat

viruses (which some

> doctors privately told me they see as well and no one seems to

understand why this is or

> could be happening). I talked about Valtrex compared to Acyclovir

and that we don't see

> Acyclovir doing well compared to Valtrex. I discussed having an

antifungal onboard prior

> to starting Valtrex and what we see if you don't. I talked about

how we don't see nystatin

> doing great things. I also had some examples of parents who gave me

copies of test

> results that showed improved metals excretion with Valtrex compared

to without.

>

> Also, the Shoemakers (sorry if I spelled that wrong, ), the

family who posted their

> child's OLE recovery here and on Dana's View's website has been

getting some really nice

> press. They also spoke at the DAN! Conference Parent Panel and I

heard they did very

> well. They're doing a nice job raising interest to natural

antifungals.

>

> A couple interesting things.

>

> Jane ElDahr, the leading immunologist in the DAN! movement, told the

Think Tank that

> acyclovir does not cross the blood brain barrier whereas Valtrex

DOES. Basically, oral

> Valtrex works as well as IV acyclovir. This may help to explain

many of our observations

> about Valtrex compared to acyclovir.

>

> Dr. Sid Baker presented a slide that showed acyclovir (remember,

Valtrex also turns into

> acyclovir and is 8 times more bioavailable) not only lowered high

adenosine, but raised

> low adeonsine. Basically, it acts as an adenosine modulator or

normalizer. This was very

> interesting to hear and gives us something to try to learn more

about. Adenosine has

> been identified to be troublesome in at least a subset of our kids.

Both Jill and Jon

> Pangborn have been looking at this. Jon Pangborn is one of the

co-founders of DAN! and

> the gatekeeper of the DAN! philosophies from a science credibility

standpoint. He watches

> carefully that everything that is presented from DAN! has a science

basis. He's like the

> science watchdog. Behind the scenes early on in my involvement of

DAN!, Jon was critical

> of my efforts because I wasn't an MD or PhD. This weekend I think

we got over that hump.

> He was very responsive to my presentations and I was grateful for

that, especially

> considering many doctors and researchers were turned away because

they only had 65

> seats for the Think Tank.

>

> Dr. Mark and Gieir talked about how antifungals lower

testosterone and how

> lowering testosterone raises glutathione. I thought this was very

interesting. Having

> Diflucan onboard while doing Valtrex would raise glutathione. This

may be another

> beneficial effect from the use of antifungals. I think if you are

going to fight off viruses,

> and possibly detox metals having raised glutathione levels seems to

make sense to me.

> Testosterone reacts synergistically with metals, specifically

mercury. The Gieirs have

> talked in the past about the concept of benefits from lowering

testosterone before

> mercury detox. The way the Think Tank works is that if you are

going to present at the

> DAN! main sessions, the group needs to approve the talk first.

There is work that the

> Gieirs are doing related to testosterone that was not approved by

the group yet, so I will

> not discuss it here, but it does seem there will be more research

done about the

> testosterone/mercury/and glutathione connection.

>

> Binstock reminded everyone that she and I found many papers

that led us to

> believe that Valtrex may be improving liver function and possibly

helping to excrete

> mercury.

>

> Now, I haven't spoken about this publicly but, Dr. Jacquelyn

McCandless and I have not

> had a, let's say, a warm unstable relationship. Ever since we met

she seemed irrated by

> me. I think something about my energy triggers something in her

that causes her not to

> trust me. I was hearing reports from several people that she was

speaking about me with

> great concern, especially when I started this group. I honestly

don't think she understood

> me or my intentions and therefor ended up criticizing me " until

proven innocent. " This

> isn't an uncommon situation in the scientific community from what I

now understand, but

> much moreso with me for some reason that I still do not fully

understand. The Last

> conference I believe I made some headway with her and now I think we

have truly turned

> the corner. First, she invited me to the Think Tank (although I

believe with some outside

> encouragement... but she did it and that's what matters to me) and

she was pretty

> supportive of the presentation as was the group. She did express

some things after the

> presentation that were misconceptions, but I think I dispelled them.

She mentioned our

> group in her general session talk and ... and.... she openly spoke

about how she changed

> her position about Rxing Valtrex. She said that she origionally

believed that she should

> only do it with positive viral markers, but now she is open to Rxing

it at times without a

> viral panel as well. This was a real change in her thinking about

Valtrex and medicine

> based antivirals and I was so glad it was said publically, because I

believe it will start to

> make it easier for parents to get their DAN! to try Valrex if the

parents want it.

>

> As time goes on, hopefully my relationship with Dr. JM will continue

to grow. Typically, I

> go with my first instinct and not put energy in places where it is

not accepted, but

> sometimes the difficult relationships in the beginning can lead to

unique relationships and

> I hope that's what continues to happen with Dr. JM, because I really

do respect her and

> appreciate the work she does for the families... and I also respect

her search for her own

> grand-daughter's cure.

>

> And one more thing. After the main conference is the Physician's

and Nurses Training,

> and Dr Liz Mumper played Ethan's recovery video after talking about

Valtrex and Ethan's

> recovery.

>

> Basically, I believe we did very well this weekend in educating and

advocating for antiviral

> treatment. I received nothing but positive feedback. I think

there will be more doctors

> trying antiviral therapy, and for the kids sake, I'm very grateful

for that.

>

> One of my goals now is to work on putting a few mini studies

together to try to

> understand what Valtrex , OLE, and Virastop are actually doing. It

would require the help

> of Jill , since she has the only lab that I know of that can

measure adenosine. She

> was at the Think Tank and has been very supportive of my work so

far. I have written her

> to see if she'll help us.

>

> Well, it's late and I'm off to bed. Sorry for not proofing or spell

checking but the magnetic

> influence of my pillow is just too strong right now.

>

> I have more conference experiences to share, but hopefully this is a

decent start.

>

> Talk to you soon.

>

> - Stan

>

[Guest guest]

Stan,

My wife and I enjoyed meeting up with you at the DAN!. I was thinking

about one of the things we talked about, and I think that putting my

son on Valtrex for a short time would be a good test to see if any

other viruses pop out that the OLE/Virastop did not get. I will have

to talk to Angie about it more, but I think it would be an interesting

test if we tried this, and find someone who would be willing to go the

other way around (i.e. OLE after Valtrex).

Anyway, once again, it was great meeting you. Give us a shout if you

ever need any help on any projects.

Shoe

[Guest guest]

Thanks for the note, A. That's great news.

- Stan

> >

> > It's after midnight and my delayed flight home caused me to miss a

> connection, so now I'm

> > sitting in my room at the Crown Royal with a glass of wine while I

> start to assemble my

> > thoughts after the DAN! Conference. I have lots to share.

> >

> > I started putting in one long letter, but I know if I continue to

> try to fit everything in one

> > document it will surely never be completed with the detail that I

> would like and ultimately

> > it might never be published so I thought I would just start writing

> and see where we go.

> >

> > I feel really good about all that was accomplished for MB12 Nasal

> Spray and Antiviral

> > treatments this week. Here were some of the highlights.

> >

> > I presented both days at the DAN! Think Tank, which is a relatively

> small and sought after

> > group of invited leading DAN! doctors and researchers who speak

> about the latest

> > research in autism.

> >

> > The first day was moderated by Dr. Jacquelyn McCandless. She had

> invited me to speak

> > about antiviral therapy along with her and Dr. Sid Baker. I don't

> know of a parent that has

> > spoken at a DAN! Think Tank before, so speaking along side of Dr JM

> and Dr Sid Baker

> > first felt like one of those " Now what doesn't belong in this

> picture " excercise at our

> > preschool, but it turned out great.

> >

> > My talk was about our group, how many people respond to the therapy,

> how many people

> > get the rashes, what we suspect they are (metals excretion), what

> the regression looks like

> > and how long it lasts. I also talked about the mercury vapor

> testing we did on teeth and

> > the rashes. I talked about how we see fungal flairs when we treat

> viruses (which some

> > doctors privately told me they see as well and no one seems to

> understand why this is or

> > could be happening). I talked about Valtrex compared to Acyclovir

> and that we don't see

> > Acyclovir doing well compared to Valtrex. I discussed having an

> antifungal onboard prior

> > to starting Valtrex and what we see if you don't. I talked about

> how we don't see nystatin

> > doing great things. I also had some examples of parents who gave me

> copies of test

> > results that showed improved metals excretion with Valtrex compared

> to without.

> >

> > Also, the Shoemakers (sorry if I spelled that wrong, ), the

> family who posted their

> > child's OLE recovery here and on Dana's View's website has been

> getting some really nice

> > press. They also spoke at the DAN! Conference Parent Panel and I

> heard they did very

> > well. They're doing a nice job raising interest to natural

> antifungals.

> >

> > A couple interesting things.

> >

> > Jane ElDahr, the leading immunologist in the DAN! movement, told the

> Think Tank that

> > acyclovir does not cross the blood brain barrier whereas Valtrex

> DOES. Basically, oral

> > Valtrex works as well as IV acyclovir. This may help to explain

> many of our observations

> > about Valtrex compared to acyclovir.

> >

> > Dr. Sid Baker presented a slide that showed acyclovir (remember,

> Valtrex also turns into

> > acyclovir and is 8 times more bioavailable) not only lowered high

> adenosine, but raised

> > low adeonsine. Basically, it acts as an adenosine modulator or

> normalizer. This was very

> > interesting to hear and gives us something to try to learn more

> about. Adenosine has

> > been identified to be troublesome in at least a subset of our kids.

> Both Jill and Jon

> > Pangborn have been looking at this. Jon Pangborn is one of the

> co-founders of DAN! and

> > the gatekeeper of the DAN! philosophies from a science credibility

> standpoint. He watches

> > carefully that everything that is presented from DAN! has a science

> basis. He's like the

> > science watchdog. Behind the scenes early on in my involvement of

> DAN!, Jon was critical

> > of my efforts because I wasn't an MD or PhD. This weekend I think

> we got over that hump.

> > He was very responsive to my presentations and I was grateful for

> that, especially

> > considering many doctors and researchers were turned away because

> they only had 65

> > seats for the Think Tank.

> >

> > Dr. Mark and Gieir talked about how antifungals lower

> testosterone and how

> > lowering testosterone raises glutathione. I thought this was very

> interesting. Having

> > Diflucan onboard while doing Valtrex would raise glutathione. This

> may be another

> > beneficial effect from the use of antifungals. I think if you are

> going to fight off viruses,

> > and possibly detox metals having raised glutathione levels seems to

> make sense to me.

> > Testosterone reacts synergistically with metals, specifically

> mercury. The Gieirs have

> > talked in the past about the concept of benefits from lowering

> testosterone before

> > mercury detox. The way the Think Tank works is that if you are

> going to present at the

> > DAN! main sessions, the group needs to approve the talk first.

> There is work that the

> > Gieirs are doing related to testosterone that was not approved by

> the group yet, so I will

> > not discuss it here, but it does seem there will be more research

> done about the

> > testosterone/mercury/and glutathione connection.

> >

> > Binstock reminded everyone that she and I found many papers

> that led us to

> > believe that Valtrex may be improving liver function and possibly

> helping to excrete

> > mercury.

> >

> > Now, I haven't spoken about this publicly but, Dr. Jacquelyn

> McCandless and I have not

> > had a, let's say, a warm unstable relationship. Ever since we met

> she seemed irrated by

> > me. I think something about my energy triggers something in her

> that causes her not to

> > trust me. I was hearing reports from several people that she was

> speaking about me with

> > great concern, especially when I started this group. I honestly

> don't think she understood

> > me or my intentions and therefor ended up criticizing me " until

> proven innocent. " This

> > isn't an uncommon situation in the scientific community from what I

> now understand, but

> > much moreso with me for some reason that I still do not fully

> understand. The Last

> > conference I believe I made some headway with her and now I think we

> have truly turned

> > the corner. First, she invited me to the Think Tank (although I

> believe with some outside

> > encouragement... but she did it and that's what matters to me) and

> she was pretty

> > supportive of the presentation as was the group. She did express

> some things after the

> > presentation that were misconceptions, but I think I dispelled them.

> She mentioned our

> > group in her general session talk and ... and.... she openly spoke

> about how she changed

> > her position about Rxing Valtrex. She said that she origionally

> believed that she should

> > only do it with positive viral markers, but now she is open to Rxing

> it at times without a

> > viral panel as well. This was a real change in her thinking about

> Valtrex and medicine

> > based antivirals and I was so glad it was said publically, because I

> believe it will start to

> > make it easier for parents to get their DAN! to try Valrex if the

> parents want it.

> >

> > As time goes on, hopefully my relationship with Dr. JM will continue

> to grow. Typically, I

> > go with my first instinct and not put energy in places where it is

> not accepted, but

> > sometimes the difficult relationships in the beginning can lead to

> unique relationships and

> > I hope that's what continues to happen with Dr. JM, because I really

> do respect her and

> > appreciate the work she does for the families... and I also respect

> her search for her own

> > grand-daughter's cure.

> >

> > And one more thing. After the main conference is the Physician's

> and Nurses Training,

> > and Dr Liz Mumper played Ethan's recovery video after talking about

> Valtrex and Ethan's

> > recovery.

> >

> > Basically, I believe we did very well this weekend in educating and

> advocating for antiviral

> > treatment. I received nothing but positive feedback. I think

> there will be more doctors

> > trying antiviral therapy, and for the kids sake, I'm very grateful

> for that.

> >

> > One of my goals now is to work on putting a few mini studies

> together to try to

> > understand what Valtrex , OLE, and Virastop are actually doing. It

> would require the help

> > of Jill , since she has the only lab that I know of that can

> measure adenosine. She

> > was at the Think Tank and has been very supportive of my work so

> far. I have written her

> > to see if she'll help us.

> >

> > Well, it's late and I'm off to bed. Sorry for not proofing or spell

> checking but the magnetic

> > influence of my pillow is just too strong right now.

> >

> > I have more conference experiences to share, but hopefully this is a

> decent start.

> >

> > Talk to you soon.

> >

> > - Stan

> >

>

[Guest guest]

Hey Shoe,

It was great seeing the both of you too.

I could try OLE on my son. Let me know the exact product you used and the

dosage and

I'll order it and try it the same way and see if anything pops up. If anyone

else wants to try

OLE after Valtrex (or even a couple people who want to try it with Valrex) feel

free to chime

in. I wouldn't have everyone jump in without others trying it first, but if a

few people want

to take a shot at it and document what happens that might help others.

- Stan

>

> Stan,

>

> My wife and I enjoyed meeting up with you at the DAN!. I was thinking

> about one of the things we talked about, and I think that putting my

> son on Valtrex for a short time would be a good test to see if any

> other viruses pop out that the OLE/Virastop did not get. I will have

> to talk to Angie about it more, but I think it would be an interesting

> test if we tried this, and find someone who would be willing to go the

> other way around (i.e. OLE after Valtrex).

>

> Anyway, once again, it was great meeting you. Give us a shout if you

> ever need any help on any projects.

>

> Shoe

>

[Guest guest]

My daughter has only been on Valtrex for a few months, but I would

happily OLE afterward.

Also, my slew of test results have come back that I'm pretty toxic.

I know I carry a significant viral load as well. I'm going to be

starting Valtrex myself, but I could OLE first and provide an

adult's view.

The only issue is I want to get pregnant at the end of the year, so

that's how much time I have to work on my loads.

Dawn

>

> Stan,

>

> My wife and I enjoyed meeting up with you at the DAN!. I was

thinking

> about one of the things we talked about, and I think that putting

my

> son on Valtrex for a short time would be a good test to see if any

> other viruses pop out that the OLE/Virastop did not get. I will

have

> to talk to Angie about it more, but I think it would be an

interesting

> test if we tried this, and find someone who would be willing to go

the

> other way around (i.e. OLE after Valtrex).

>

> Anyway, once again, it was great meeting you. Give us a shout if

you

> ever need any help on any projects.

>

> Shoe

>

[Guest guest]

We used the Wild Oats house brand in drops ($8.95 a bottle). It is

about 40% alcohol. I think I would definitely do it with the

Virastop if starting all over again.

http://www.wildoats.com

The dosage we used was 1/3 the max adult dose (120 drops for a 150

lb adult) Since my son is about 50 lbs, we maxed out at around 45-50

drops separated over 3 times a day (i.e. - 15 drops 3 times a day).

We usually syringed this hidden in drinks w/other supplements

because it does not taste that good.

We are currently doing it again because we had to stop his

maintenance dose early for the news story we did, and I did not want

him to have any late reactions. This time we are adding Virastop.

We have seen some very minor regressions (compared to the last time)

and they are short lived, but for the most part we knocked most of

it out the first round. We will probably be able to get some

Valtrex in late May, and it depends on whether we make any more

changes. We are just about to add ALA to his chelation schedule.

Yeast goes crazy with him when we are chelating and attacking

viruses. I will have to talk it over with Angie, since I am told

ALA really gets the yeast going from what.

It will be cool to figure out if one gets viruses that the other

does not and vice versa. I am interested to see if others try this,

since it will be awhile until we can. This could really be some

great info!

> >

> > Stan,

> >

> > My wife and I enjoyed meeting up with you at the DAN!. I was

thinking

> > about one of the things we talked about, and I think that

putting my

> > son on Valtrex for a short time would be a good test to see if

any

> > other viruses pop out that the OLE/Virastop did not get. I will

have

> > to talk to Angie about it more, but I think it would be an

interesting

> > test if we tried this, and find someone who would be willing to

go the

> > other way around (i.e. OLE after Valtrex).

> >

> > Anyway, once again, it was great meeting you. Give us a shout

if you

> > ever need any help on any projects.

> >

> > Shoe

> >

>

[Guest guest]

That could be a good sign actually. Get the yeast under control

with Difulcan or Amphotericin B, etc and see if any gains come

along. I would get that yeast under control. Keep us posted.

- Stan

> >

> > Stan,

> >

> > My wife and I enjoyed meeting up with you at the DAN!. I was

thinking

> > about one of the things we talked about, and I think that

putting my

> > son on Valtrex for a short time would be a good test to see if

any

> > other viruses pop out that the OLE/Virastop did not get. I

will have

> > to talk to Angie about it more, but I think it would be an

interesting

> > test if we tried this, and find someone who would be willing

to go the

> > other way around (i.e. OLE after Valtrex).

> >

> > Anyway, once again, it was great meeting you. Give us a shout

if you

> > ever need any help on any projects.

> >

> > Shoe

> >

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I created a file in the Files folder to track your comments and the

results of people who try OLE either before or after Valtrex and

we'll see what we can learn.

- Stan

> > >

> > > Stan,

> > >

> > > My wife and I enjoyed meeting up with you at the DAN!. I was

> thinking

> > > about one of the things we talked about, and I think that

> putting my

> > > son on Valtrex for a short time would be a good test to see if

> any

> > > other viruses pop out that the OLE/Virastop did not get. I

will

> have

> > > to talk to Angie about it more, but I think it would be an

> interesting

> > > test if we tried this, and find someone who would be willing

to

> go the

> > > other way around (i.e. OLE after Valtrex).

> > >

> > > Anyway, once again, it was great meeting you. Give us a shout

> if you

> > > ever need any help on any projects.

> > >

> > > Shoe

> > >

> >

>

[Guest guest]

Thanks ,

There are certain things that are considered more common signs like

hypotonia and low registration, sensory integration issues, eye

problems and others. But it seems the best way to know is to just

do a trial and see what happens. Within 40 days you should know if

it's working.

- Stan

> > >

> > > Stan,

> > >

> > > My wife and I enjoyed meeting up with you at the DAN!. I

was

> thinking

> > > about one of the things we talked about, and I think that

> putting my

> > > son on Valtrex for a short time would be a good test to see

if

> any

> > > other viruses pop out that the OLE/Virastop did not get. I

> will have

> > > to talk to Angie about it more, but I think it would be an

> interesting

> > > test if we tried this, and find someone who would be willing

> to go the

> > > other way around (i.e. OLE after Valtrex).

> > >

> > > Anyway, once again, it was great meeting you. Give us a

shout

> if you

> > > ever need any help on any projects.

> > >

> > > Shoe

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I haven't used it myself, but many docs talk about the Meyers and

say they see good things with it.

- Stan

> > >

> > > Stan,

> > >

> > > My wife and I enjoyed meeting up with you at the DAN!.

I was

> thinking

> > > about one of the things we talked about, and I think that

> putting my

> > > son on Valtrex for a short time would be a good test to

see if

> any

> > > other viruses pop out that the OLE/Virastop did not

get. I

> will have

> > > to talk to Angie about it more, but I think it would be

an

> interesting

> > > test if we tried this, and find someone who would be

willing

> to go the

> > > other way around (i.e. OLE after Valtrex).

> > >

> > > Anyway, once again, it was great meeting you. Give us a

shout

> if you

> > > ever need any help on any projects.

> > >

> > > Shoe

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Good idea Stan. Thanks. I spoke to Angie tonight about it, and she

thought it is a pretty cool experiment, and is on board once we get

to a point where we can add Valtrex in. Wouldn't that be wild if it

turns out that more viruses tend to emerge either way. This could

tell us a lot.

> > > >

> > > > Stan,

> > > >

> > > > My wife and I enjoyed meeting up with you at the DAN!. I

was

> > thinking

> > > > about one of the things we talked about, and I think that

> > putting my

> > > > son on Valtrex for a short time would be a good test to see

if

> > any

> > > > other viruses pop out that the OLE/Virastop did not get. I

> will

> > have

> > > > to talk to Angie about it more, but I think it would be an

> > interesting

> > > > test if we tried this, and find someone who would be willing

> to

> > go the

> > > > other way around (i.e. OLE after Valtrex).

> > > >

> > > > Anyway, once again, it was great meeting you. Give us a

shout

> > if you

> > > > ever need any help on any projects.

> > > >

> > > > Shoe

> > > >

> > >

> >

>