Re: Re: Turning a corner: thoughts on amazing gains and the AC protocol

[Guest guest]

Irene!!!! Congratulations!!!! God bless you for posting and encouraging us, even

those of us who have not started yet.

So happy for you guys!

Isa

Enviado desde mi oficina móvil BlackBerry® de Telcel

[ ] Re: Turning a corner: thoughts on amazing gains and

the AC protocol

Thanks for posting this Irene. It is still amazing to me to hear about such

great recoveries! This post was especially needed here, as we have had to hold

on chelation due to what I believe are adrenal issues. I feel more than ever

that we need to get back to it as soon as we can get both kids' adrenals

functioning better.

Congrats on your son's tremendous gains.

>

> I posted on this on another forum. I apologize for the length. But I think my

experience with my son, bears posting here as well, to give hope and

encouragement to those just starting out and to those perhaps further along who

are in a stall or have hit a bump with the AC protocol.

>

> My son is 5 now. We are coming up on round 96. We have been doing the AC

protocol for 2 years. My son got 26 shots in his first 18 months of life,

including several flu shots and one in utero. My boy lost his skills starting

with a Hep A shot at age one, and with all the ensuing shots down to age 18

months, before we stopped the madness. My boy was loaded with metals, needless

to say and was in a terrible way. Early Intervention in our state came in at 19

months and intimated we were dealing with a case of severe autism. We got an

appt with a neurodevelopmental ped - but that appt we had to wait 6 months for.

During this time we discovered biomed - started gfcf, omega 3 oils, yeast

fighters and probiotics. By the time of our appt, we got a dx of high

functioning PDD-nos. Whatever, labels meant nothing - my boy was vax injured.

His gut was still a mess and he could not function or communicate properly. For

the first several rounds of dmsa we saw lots of gains. Then we added ALA - this

was very tough, stressed his adrenals out, and we could only give him 3mg or so

for half a year. At 25 rounds we hit a stall, that lasted 8 months, 8 long,

long months where there was even regression. We tried everything people tout

here as miraculous - Enhansa, high dose vitamin A, antivirals, vinpocetine,

gingko,, b vites, you name it. Nothing worked or mattered. We persevered. By

round 50 we were able to up ALA and were at more weight appropriate doses. We

saw some satisfying gains, then nothing for a few months. At round 66 we saw

some good gains again, then nothing.

>

> At this time my son's gut was basically healing - no more yeast or parasites

for months, formed stools, he could eat many things, corn eggs, some dairy, etc,

and he loved to try lots of new foods. His seasonal allergies were gone and food

allergies starting to abate. Still he spoke like a cave man and had limited

receptive understanding. Cognition lagged way behind. We just kept chelating.

My dh and I went round and round on whether an EEG was necessary. My dh said

no, no EEGS or Pharma rx meds, lets just chelate and eventually we will have

enough rounds and it will get better. He prevailed and we waited.

>

> In the last 2 weeks it is like someone flipped a switch. My son talks, and

talks and talks, and seems to understand everything. He plays word games, makes

jokes. He seems to be 100% present for the first time in his life. The teacher

reports he greets peers and plays with them on the playground instead of merely

running around the perimeter as is his habit. He is by no means recovered or

age appropriate yet - but he is starting to be on his way there. It is like he

can't tell me enough things - like he is uncorked or something. The other night

he would not go to sleep, it was 11 pm and he is a good sleeper. He had a place

mat with the presidents on it and he was hell bent on showing me that he knew

all their names from Washington onward. He even told me, " you know,

Washington even has his own bridge. " I almost fell over laughing. I finally

uttered words I thought I would never say, but I had to... " sweetie, please be

quiet, stop talking, it is time to go to sleep. " We have done nothing really,

other than what we have for the last 2 years. In fact, we have recently lowered

all of his supplements considerably. He takes nothing but the most basic mins

and vites, a few amino acids, liver support, fish oils, antioxidants, and

probiotics. I even hesitated to post this, for fear of jinxing it somehow.

>

> I posted this basically to say, there is one miracle supplement only in my

view: AC chelation - dmsa and ala, week after week, after tedious sleepless

week. To anyone doubting it or having a hard time of it, do not give up! We

have had stall after stall and regression, and at times I wanted to throw in the

towel, thinking my boy is damaged beyond repair. But with the support of people

here on the boards and Andy, and my spouse, we just forged on, and on and on.

And I believe we have another 200 rounds to go, for full recovery. But I

believe in my heart it is truly possible. We have only one child, and for the

first time, I feel his presence, his true presence as another person with

opinions and ideas, fully present living in our house. It is a beautiful thing.

>

> I want to close my post with an inspirational saying my late mother, a

relentless optimist, kept by her bed side even as she lay dying of breast

cancer:

>

> Keep your heart open to dreams, for as long as there is a dream, there is

hope, and as long as there is hope, there is joy in living.

>

> She lived this and believed this, and she was very right. I have hope, and

joy now.

>

> Irene

> 5 year old, 95 rounds

>

[Guest guest]

We are on round 63 and are experiencing similar stages in our progression. My

daughter is 9 and as services become more limited it is great to see what may be

a possibility.

S

Sent from my iPhone

On Aug 25, 2010, at 5:29 PM, " mywonderbaby " <mywonderbaby@...> wrote:

Hi Irene,

How are you? I was so glad to see this message. I have been thinking about you

guys queit often. Its amazing the progress you guys have made. We are on our 66

round and we still have a full blown autistic child but we have come a long way.

Rimaan is talking but only to communicate his needs and nowhere an age

appropriate conversation. Teaching him things is a big challenge. I am so tired

but one thing that keeps me going is chealation. I hope he makes progress.

Thanks for the update. Always good to hear from you !

Thanks,

Maya

>

> I posted on this on another forum. I apologize for the length. But I think my

experience with my son, bears posting here as well, to give hope and

encouragement to those just starting out and to those perhaps further along who

are in a stall or have hit a bump with the AC protocol.

>

> My son is 5 now. We are coming up on round 96. We have been doing the AC

protocol for 2 years. My son got 26 shots in his first 18 months of life,

including several flu shots and one in utero. My boy lost his skills starting

with a Hep A shot at age one, and with all the ensuing shots down to age 18

months, before we stopped the madness. My boy was loaded with metals, needless

to say and was in a terrible way. Early Intervention in our state came in at 19

months and intimated we were dealing with a case of severe autism. We got an

appt with a neurodevelopmental ped - but that appt we had to wait 6 months for.

During this time we discovered biomed - started gfcf, omega 3 oils, yeast

fighters and probiotics. By the time of our appt, we got a dx of high

functioning PDD-nos. Whatever, labels meant nothing - my boy was vax injured.

His gut was still a mess and he could not function or communicate properly. For

the first several rounds of dmsa we saw lots of

gains. Then we added ALA - this was very tough, stressed his adrenals out, and

we could only give him 3mg or so for half a year. At 25 rounds we hit a stall,

that lasted 8 months, 8 long, long months where there was even regression. We

tried everything people tout here as miraculous - Enhansa, high dose vitamin A,

antivirals, vinpocetine, gingko,, b vites, you name it. Nothing worked or

mattered. We persevered. By round 50 we were able to up ALA and were at more

weight appropriate doses. We saw some satisfying gains, then nothing for a few

months. At round 66 we saw some good gains again, then nothing.

>

> At this time my son's gut was basically healing - no more yeast or parasites

for months, formed stools, he could eat many things, corn eggs, some dairy, etc,

and he loved to try lots of new foods. His seasonal allergies were gone and food

allergies starting to abate. Still he spoke like a cave man and had limited

receptive understanding. Cognition lagged way behind. We just kept chelating. My

dh and I went round and round on whether an EEG was necessary. My dh said no, no

EEGS or Pharma rx meds, lets just chelate and eventually we will have enough

rounds and it will get better. He prevailed and we waited.

>

> In the last 2 weeks it is like someone flipped a switch. My son talks, and

talks and talks, and seems to understand everything. He plays word games, makes

jokes. He seems to be 100% present for the first time in his life. The teacher

reports he greets peers and plays with them on the playground instead of merely

running around the perimeter as is his habit. He is by no means recovered or age

appropriate yet - but he is starting to be on his way there. It is like he can't

tell me enough things - like he is uncorked or something. The other night he

would not go to sleep, it was 11 pm and he is a good sleeper. He had a place mat

with the presidents on it and he was hell bent on showing me that he knew all

their names from Washington onward. He even told me, " you know,

Washington even has his own bridge. " I almost fell over laughing. I finally

uttered words I thought I would never say, but I had to... " sweetie, please be

quiet, stop talking, it is

time to go to sleep. " We have done nothing really, other than what we have for

the last 2 years. In fact, we have recently lowered all of his supplements

considerably. He takes nothing but the most basic mins and vites, a few amino

acids, liver support, fish oils, antioxidants, and probiotics. I even hesitated

to post this, for fear of jinxing it somehow.

>

> I posted this basically to say, there is one miracle supplement only in my

view: AC chelation - dmsa and ala, week after week, after tedious sleepless

week. To anyone doubting it or having a hard time of it, do not give up! We have

had stall after stall and regression, and at times I wanted to throw in the

towel, thinking my boy is damaged beyond repair. But with the support of people

here on the boards and Andy, and my spouse, we just forged on, and on and on.

And I believe we have another 200 rounds to go, for full recovery. But I believe

in my heart it is truly possible. We have only one child, and for the first

time, I feel his presence, his true presence as another person with opinions and

ideas, fully present living in our house. It is a beautiful thing.

>

> I want to close my post with an inspirational saying my late mother, a

relentless optimist, kept by her bed side even as she lay dying of breast

cancer:

>

> Keep your heart open to dreams, for as long as there is a dream, there is

hope, and as long as there is hope, there is joy in living.

>

> She lived this and believed this, and she was very right. I have hope, and joy

now.

>

> Irene

> 5 year old, 95 rounds

>

[Guest guest]

I'm so glad that book is helping you. It helped Ethan a lot. he still

writes better when he draws his thoughts out in a picture first.

I am more hopeful now than I have been in years. Between deciding to home

school and seeing great gains academically and then with AC chelation and

his better health. This is just becoming a year long Christmas for us.

I'm wishing you all continued success as the rounds add up.

Haven

[Guest guest]

Irene what is your view on IV chelation? My son is full of lead 83 after a

provoke urine test...

Sent from my BlackBerry® wireless device

[ ] Re: Turning a corner: thoughts on amazing gains and

the AC protocol

Thanks Haven and to the other posters. I am glad this post of mine from last

summer continues to give people hope - that is why I posted. We are now at round

121. We have hit some issues of bacteria and low neutrophils and low white blood

count, necessitating a hiatus from DMSA. (we will return to it when his numbers

are up due to lead) But the work horse chelator of ALA is still on board, doing

the work of clearing metals from my boy's brain. He continues to make great

strides and has much more language and is more connected. Some blips in the road

with bacteria etc caused some hurdles - but now we are back on track. And

tackling anti virals along the way. We have also started to work with him on

acquiring language in a different way- thanks to your great reference Haven to

" Learning with a visual brain in an auditory world. " A wonderful book that has

helped us to help him acquire a wider vocabulary and to give meaning and context

to language for hiim.

To those of you just starting out-and perhaps whose kids have little or no

language- know that your child is in there, never stop chelating, don't give up,

never stop talking to them, explaining things as if they are NT. AC chelation

helps to lift the veil and someday - maybe not today, tomorrow - maybe months or

even a year or two from now you will find out that they were taking in what you

were saying but did not yet have the means to communicate this. Just today my

son related events from almost 3 and 4 years ago - when I had yelled at him at

certain family events for certain behaviors. He let me know that he remembered

the events in vivid detail - and how upset he was that I had admonished him

repeatedly not to do something. At the time I thought he did not hear or

understand me. He understood just fine at the time, but could not tell me so, or

explain that his stimm was calming to him at a noisy event, and that he felt sad

that I was disappointed in him. My heart was broken for him -

thinking of the silence he was trapped in back then. But I felt a sense of

satisfaction, purpose if you will - that all of these sleepless weekends are for

a purpose and have empowered him.

Like Haven, I too was told all sorts of things about my boy could and could not

do because of his autism, and to have no expectations. But we all have the hope

and the reality of AC chelation. We know better - and no one knows the great

things our kids may be capable of in the future because of it. When I think of

my son and autism in

general the old saying " still waters run deep " comes to mind.

>

> Wow! Irene that is wonderful! You give hope to many!

>

>

>

[Guest guest]

I'm not Irene, but I would say do not do IV. My son had serious respiratory

reactions after IV chelation and it brought back stimming, OCD, and SID --

so yes, it caused him to regress in many areas we had made great progress

in. I think low dose, frequent chelation is best. I think IV just moved

metals around and deposits them elsewhere. It can also cause adrenal

crisis. I honestly think now the reactions my son had were not allergy but

IV taxed his adrenals so much they were depleted.

Challenge tests pose the same risk. The best way to see what your child is

toxic in, I think is a DD hair test and apply the rules of counting.

We have seen more gains in eight rounds of AC than we ever saw in the months

we did IV.

Get lots of input from others and then make your decision.

[Guest guest]

Dear Sasmita,

It took us a long time to realize we should have done AC Protocol in the

first place. My son -- I know we are lucky - improved greatly with diet and

metabolic supports. by age four and a half, the stimming was gone. By age

six, the OCD and SID were all but gone. Then we did IV. My son had serious

delayed reactions after the last two rounds of IV DMPS. The second reaction

snowballed into pneumonia. We stopped. That was '06-'07. IV also brought

back stimming, OCD, anxiety, and SID. It did get a lot of lead out, though.

Then in the summer of '10, the DAN said he was very high in lead so we got

talked into EDTA IV only. We thought the reactions were due to the sulfa in

DMPS, so we went ahead. On the fourth round, our son had a severe, delayed

reaction while we were stuck in traffic on the freeway! That was

frightening, but with asthma meds we got him through it. the DAN wanted us

to continue but then wanted to give him oral prednisone before each

treatment. Since the only other time our son was on oral steroids he had a

psychotic episode, we said " NO! " And we were done with IV. Instead of

support us with the AC Protocol, the DAN said, " Well, jsut leave the metals

in there then. " Just because we didn't want to do it HIS way.

Then I remembered this group and the AC Protocol and started re-reading

Andy's book. I had over the years read some wonderful research about ALA

(and Acetyl-L-Carnitine, which we've had our son on since age three). I was

very nervous, given the reactions he had to IV chelation, but another parent

gave me a good hypothetical kick in the pants, and we started over nine

weeks ago, and of course wish we'd started years ago.

Since regression, my son has been sick or had an infection with fever

roughly about every two weeks. Our lives have revolved around his constant

illnesses. He was diagnosed with an NOS immune disorder, chronic bronchitis

and pneumonia, and also -- whenever an insect bites him, he will develop

radiating staph from each and every bite site. We had to put him on Xopanex

and Pulmacort for the " asthma. "

Antoher parent suggested to me that the reacitons he had to IV and his

" asthma " might actually be adrenal issues. So when we began AC, we started

with 12.5 mg ALA only. We put him on GSE and biotin for yeast along with

his other supplements. We started him on ACE for adrenal support. I

started with only about 25 mg of ACE once a day. He started acitn glike he

was having an asthma attack on the first day we started AC. I upped his ACE

to 25 mg twice a day. Since we started he has needed his rescue inhaler

only three times in the nine weeks. All were on day one of a round, but I

then would up his ACE. since upping ACE to 50 mg twice a day, he has not

needed any asthma meds.

Since starting the AC Protocol, my son has not been sick. He has not had

any infection. The improvement in his health is enough reason for us to

continue. We still see increased stimming at times along with SID and OCD.

The OCD is much improved. A parent posted a note by ANDY from onibasu which

stated the worst symptoms your child is having may increase at times while

doing AC. I now think of it as a sign the chelation is working. I don't

like the increased stimming, but time will tell. We now have extended times

where there is NO stimming, and this is a positive sign to us.

Sometimes when it is bad, I give two sprays of Endotrex (which is

L-thionine) spray, and this helps a lot with the hyperactivity and stimming.

When my son has anxiety, is easy to cry or is very clingy, then I know to

give or up the ACE. If he starts to clear his throat and have this

distinctive cough (the way his " asthma' always manifested), then I know I

need to up the ACE. When I give ACE, these symptoms subside.

I think it makes my son calmer and allows him to cope.

Hope this helps you.

Haven

[Guest guest]

haven...what is the ACE supplement you used??

From: Haven DeLay <hdelay@...>

Subject: Re: [ ] Re: Turning a corner: thoughts on amazing gains

and the AC protocol

Date: Tuesday, March 22, 2011, 5:52 PM

 

Dear Sasmita,

It took us a long time to realize we should have done AC Protocol in the

first place. My son -- I know we are lucky - improved greatly with diet and

metabolic supports. by age four and a half, the stimming was gone. By age

six, the OCD and SID were all but gone. Then we did IV. My son had serious

delayed reactions after the last two rounds of IV DMPS. The second reaction

snowballed into pneumonia. We stopped. That was '06-'07. IV also brought

back stimming, OCD, anxiety, and SID. It did get a lot of lead out, though.

Then in the summer of '10, the DAN said he was very high in lead so we got

talked into EDTA IV only. We thought the reactions were due to the sulfa in

DMPS, so we went ahead. On the fourth round, our son had a severe, delayed

reaction while we were stuck in traffic on the freeway! That was

frightening, but with asthma meds we got him through it. the DAN wanted us

to continue but then wanted to give him oral prednisone before each

treatment. Since the only other time our son was on oral steroids he had a

psychotic episode, we said " NO! " And we were done with IV. Instead of

support us with the AC Protocol, the DAN said, " Well, jsut leave the metals

in there then. " Just because we didn't want to do it HIS way.

Then I remembered this group and the AC Protocol and started re-reading

Andy's book. I had over the years read some wonderful research about ALA

(and Acetyl-L-Carnitine, which we've had our son on since age three). I was

very nervous, given the reactions he had to IV chelation, but another parent

gave me a good hypothetical kick in the pants, and we started over nine

weeks ago, and of course wish we'd started years ago.

Since regression, my son has been sick or had an infection with fever

roughly about every two weeks. Our lives have revolved around his constant

illnesses. He was diagnosed with an NOS immune disorder, chronic bronchitis

and pneumonia, and also -- whenever an insect bites him, he will develop

radiating staph from each and every bite site. We had to put him on Xopanex

and Pulmacort for the " asthma. "

Antoher parent suggested to me that the reacitons he had to IV and his

" asthma " might actually be adrenal issues. So when we began AC, we started

with 12.5 mg ALA only. We put him on GSE and biotin for yeast along with

his other supplements. We started him on ACE for adrenal support. I

started with only about 25 mg of ACE once a day. He started acitn glike he

was having an asthma attack on the first day we started AC. I upped his ACE

to 25 mg twice a day. Since we started he has needed his rescue inhaler

only three times in the nine weeks. All were on day one of a round, but I

then would up his ACE. since upping ACE to 50 mg twice a day, he has not

needed any asthma meds.

Since starting the AC Protocol, my son has not been sick. He has not had

any infection. The improvement in his health is enough reason for us to

continue. We still see increased stimming at times along with SID and OCD.

The OCD is much improved. A parent posted a note by ANDY from onibasu which

stated the worst symptoms your child is having may increase at times while

doing AC. I now think of it as a sign the chelation is working. I don't

like the increased stimming, but time will tell. We now have extended times

where there is NO stimming, and this is a positive sign to us.

Sometimes when it is bad, I give two sprays of Endotrex (which is

L-thionine) spray, and this helps a lot with the hyperactivity and stimming.

When my son has anxiety, is easy to cry or is very clingy, then I know to

give or up the ACE. If he starts to clear his throat and have this

distinctive cough (the way his " asthma' always manifested), then I know I

need to up the ACE. When I give ACE, these symptoms subside.

I think it makes my son calmer and allows him to cope.

Hope this helps you.

Haven

[Guest guest]

I buy Thorne ACE (adrenal cortex extract).

Haven

[Guest guest]

where can we buy Thorne Ace

Kara

________________________________

From: Haven DeLay <hdelay@...>

Sent: Tue, March 22, 2011 7:23:44 PM

Subject: Re: [ ] Re: Turning a corner: thoughts on amazing gains

and the AC protocol

I buy Thorne ACE (adrenal cortex extract).

Haven

[Guest guest]

I got ours at Amazon.com