Re: Anyone stop protocol and then go back on?

[Guest guest]

,

I am interested in the response for this.

Can you share a little bit more about your situation? what symptoms improved &

what did not.

How did the labs change over the course?

Thanks,

Kay

________________________________

From: ljburns83 <lisajburns@...>

Sent: Wed, December 22, 2010 7:19:13 PM

Subject: Anyone stop protocol and then go back on?

Hi All,

My son has been a pt. of Dr. G's for four years and we have seen great results

the first three years. Over the past year, two things have happened which make

me take pause. One, my son has not shown marked improvement and two, I have

seen numerous ASD children who are doing better than him without any medical

intervention.

This may be the wrong forum to ask, but is there anyone in this group that has

either stopped or stopped and re-started ?

If you would like to respond public or off-line, all comments would be

appreciated.

Thank you,

[Guest guest]

I did.  Strictly because of financial reasons, although my oldest son Garrett -

the one that was on the spectrum - was doing very well and his labs were so good

that Dr G was considering pulling off some of the meds in the near future - I

think the antiviral? Can't remember specifically.  He did not appear to

regress.

Although both boys were on the protocol, my youngest was typically

developing.  Dr G had said it was weird because the 2nd son had far worse

looking blood work than his big brother on the spectrum.  And at the time he

commented on how good Garrett's labs were, he said we haven't quite figured this

one out yet.

Fast forward, and we were forced to stop.  All seemed ok, and after a few

months

I breathed a sigh of relief.  But at 9 months, I started feeling like something

was wrong with (#2) ... couldn't pin it, but I started taking him to the

pediatrician saying something wasn't right.  (I heard later that there seems

to

be a 9 month window after stopping an antiviral before symptoms may come back

for a lot of people & I went back and sure enough - it was 9 months when I

first

went for " a feeling " .)  Three months into that (right as my pediatrician

decides

to go back to genetics full time & I have to find a new ped), started

filling the full Fudoko criteria for Chronic Fatigue Syndrome.  He became so

fatigued that he couldn't hold his spoon to eat in the morning - he'd cry if it

wasn't a plastic spoon.  But he could go to school - he just was 'off', and

slower to walk.  But by the time he made it home, he would be in a total crash

and not move from the couch. The entire weekend was spent laying down.  He

couldn't walk across a parking lot, hold onto a swing...  He gradually

partially

lost and changed his eye contact.  He started having headaches.  He started

losing receptive and expressive language, and at times babbled such nonsense

that I really was freaking out.  Then months into it (I can't say right now how

many - maybe 5 or 6?), he spiked a fever of 106.9, and he looked great, and from

that day forward (over a few months) his energy started perking up, his language

improved, his eye contact improved, sensory problems (lukewarm water would

'burn' him) improved, etc.  Then it all started all over again.  So we went to

Texas (because I needed help desperately too and couldn't get in to see Dr G). 

My husband had never quite had the committed belief that the protocol had saved

Garrett from autism, but watching the CFS was so dramatic that he agreed on the

trip.  Since Dr started with antivirals (I think), I told my husband

that it will take up to a month to start seeing the subtle benefits (that's how

it was the first time w/antivirals).  We were on the front porch 3 days after

getting back, and I was just saying it would be a little while until we see

something so don't be discouraged.  At that moment, 'leaped' out the

door, danced a little jig, said something, and danced back into the house.  So

I

said maybe not quite that long.  It was pretty intense.  It completely erased

my

husband's years long 'doubt' in that one moment.

My oldest was seeming to do fine, but not a particularly happy kid.  He was

still improving socially, but he was very negative, irritable (still is), and

not doing so well in school.  Some of that could and is situational, some of it

is .  I think his labs still looked fine.  But " since we were there " , Dr

did a trial of Nizoral (one of Garrett's real good meds) to see if there

was any improvement.  Two weeks into it, Garrett & I were riding in the car,

and

he'd been quiet, in thought.  I had said almost nothing about their meds - I

didn't want them thinking about them much - and out of the blue, he says " Mom? 

Can I stay on this new medicine forever?  It makes it so much easier to be

good. "   And he had been so much more pleasant.  (It wore off, but hey.)  So

he

has been on the meds ever since.  I don't have phone consults as often as

needed

or maybe we'd be doing even better,  but he has definitely improved far more

socially since starting over the last year or so - but is also more aware of his

difference.  He knows the 'autism' diagnosis, but we talk about how it's not

really autism and he's getting better all the time, and how I believe it can be

cured.  I explain that he's only cared about being around kids for about 2

years, where most kids have been playing with other kids for 9 and more years,

so he just has more to learn - don't give up.  We struggle with diet, and

there's more to be worked out - he's one irritable mean-tempered kid right now

at 11, but since rediscovering soy, it's sooo much better, and now we have to

work on the damage done by the almost year of rage problems he had while eating

soy.

Anyway, yes.  If you feel like going back, I'd say go for it in a heartbeat.

________________________________

From: ljburns83 <lisajburns@...>

Sent: Wed, December 22, 2010 9:19:13 PM

Subject: Anyone stop protocol and then go back on?

 

Hi All,

My son has been a pt. of Dr. G's for four years and we have seen great results

the first three years. Over the past year, two things have happened which make

me take pause. One, my son has not shown marked improvement and two, I have seen

numerous ASD children who are doing better than him without any medical

intervention.

This may be the wrong forum to ask, but is there anyone in this group that has

either stopped or stopped and re-started ?

If you would like to respond public or off-line, all comments would be

appreciated.

Thank you,

[Guest guest]

,

We are in the same boat as you. Wondering if this is the right path to

continue with no marked improvement for a long time. Scared to stop but

doubting all the same.

Please send in opinions.

Martha

On Wed, Dec 22, 2010 at 9:19 PM, ljburns83 <lisajburns@...> wrote:

>

>

> Hi All,

> My son has been a pt. of Dr. G's for four years and we have seen great

> results the first three years. Over the past year, two things have happened

> which make me take pause. One, my son has not shown marked improvement and

> two, I have seen numerous ASD children who are doing better than him without

> any medical intervention.

>

> This may be the wrong forum to ask, but is there anyone in this group that

> has either stopped or stopped and re-started ?

>

> If you would like to respond public or off-line, all comments would be

> appreciated.

>

> Thank you,

>

>

>

>

[Guest guest]

Hi ,

Based on our experience and reading responses of others, it appears some do not

respond to protocol. However, some parents swear by the protocol for

their child. As a parent, you have to decide what works best for your child.

My opinion is was treating/masking symptoms, not addressing the cause, for

us.

In our case, it was a clear vaccine reaction that caused my sons issues and

after stopping protocol, we opted for protocols designed to reverse the

vaccine adverse effects. ZERO autism in unvaccinated populations (Amish,

Homefirst, 9,000 surveyed kids) caught my attention, as did the stories of

improvement and cure.

Our symptoms of lack of eye contact, spinning, flapping, noises, no social, no

speech, no bowel control, tons of allergies seemed to fit both and Vaccine

damage.

By reversing the Measles Virus with High Vitamin A, we got eye contact and

reduced stims within a week or two, plus a quantum leap in cognitive skills.

Now we are working on MERCURY POISONING (pdf shows symptom comparision)

http://www.generationrescue.org/pdf/ads/050608.pdf

which appears to be the source of our issues.

Our ATEC has dropped over 60 points, he is getting straight A's at grade level,

some mainstream classes, giving speeches, playing sports and we believe our son

will lose his diagnosis in the next 2-3 years and not have to continue on any

prescription medication. (He's not on any now)

There are almost infinite theories on cause and resolution to the ASD/

diagnosis which makes it challenging for parents to ascertain which direction to

go and not waste precious time or resources. I just report what works for us and

my experience and observations.

This animation raises some interesting questions

Street Corner Autism Debate http://bit.ly/gSGWGT

Good luck in finding what works best for you.

>

> Hi All,

> My son has been a pt. of Dr. G's for four years and we have seen great results

the first three years. Over the past year, two things have happened which make

me take pause. One, my son has not shown marked improvement and two, I have

seen numerous ASD children who are doing better than him without any medical

intervention.

>

> This may be the wrong forum to ask, but is there anyone in this group that has

either stopped or stopped and re-started ?

>

> If you would like to respond public or off-line, all comments would be

appreciated.

>

> Thank you,

>

>

[Guest guest]

FWIW...

my son was not vaccinated and still regressed into autism. We are not Amish, my

son was a patient at Homefirst for a while before he regressed. He is a

" toughnut " and has made some progress, but not much for all we have done. Still

exploring the protocol.

>

> Hi ,

>

> Based on our experience and reading responses of others, it appears some do

not respond to protocol. However, some parents swear by the protocol

for their child. As a parent, you have to decide what works best for your child.

>

> My opinion is was treating/masking symptoms, not addressing the cause,

for us.

>

> In our case, it was a clear vaccine reaction that caused my sons issues and

after stopping protocol, we opted for protocols designed to reverse the

vaccine adverse effects. ZERO autism in unvaccinated populations (Amish,

Homefirst, 9,000 surveyed kids) caught my attention, as did the stories of

improvement and cure.

>

[Guest guest]

Hi,

Could you please educate us as to what protocols are available to reverse

adverse effects of vaccine that have helped your kids. My daughter had a

reaction to the MMR vaccine.

Really would appreciate your help.

Thanks,

Kamal

Sent from my iPad

[Guest guest]

My second son did not complete his vaccines.  He definitely didn't get the

MMR. 

He developed typically until he was 5, then regressed 9 months after coming off

antivirals. 

Vaccines trigger immune responses just like other illnesses, and perhaps we're

going to find that XMRV replicating during that immune resonse had an impact...

or at least an improper cellular immunity response by XMRV inhibiting it (which

cools off the initial immune response is how I understand it).  Just another

possible paradigm.

But yes, my oldest definitely regressed after the MMR.  Then he got better and

I

stopped tripping out.  Then, he got the flu, and the flu is what pushed him

into

full-blown autism.  Yes, he had displayed some typical symptoms very early on,

but I don't think that if I had had Dr Goldberg as a pediatrician when he was a

baby, that he would have progressed.  I believe he would have developed it with

or without vaccines.  My youngest son - previously typically developing - is

being tentatively diagnosed PDD, because his Chronic Fatigue Syndrome symptoms

are soooo similar to autism.

HTH

________________________________

From: djajhooten <dhooten@...>

Sent: Thu, December 23, 2010 3:32:00 PM

Subject: Re: Anyone stop protocol and then go back on?

 

FWIW...

my son was not vaccinated and still regressed into autism. We are not Amish, my

son was a patient at Homefirst for a while before he regressed. He is a

" toughnut " and has made some progress, but not much for all we have done. Still

exploring the protocol.

>

> Hi ,

>

> Based on our experience and reading responses of others, it appears some do

not

>respond to protocol. However, some parents swear by the protocol for

>their child. As a parent, you have to decide what works best for your child.

>

> My opinion is was treating/masking symptoms, not addressing the cause,

for

>us.

>

>

> In our case, it was a clear vaccine reaction that caused my sons issues and

>after stopping protocol, we opted for protocols designed to reverse the

>vaccine adverse effects. ZERO autism in unvaccinated populations (Amish,

>Homefirst, 9,000 surveyed kids) caught my attention, as did the stories of

>improvement and cure.

>