Re: Re: Does anyone have an after round protocol?

[Guest guest]

I wouldn't be afraid to try to move up from that.

We stated at 1/4 (about 66mg of Nutricology - I still have 1 bottle leftover

then moving over to Thorne)and moved up to

1/2 cap it seemed to work for awhile in the mornings

but her adrenal symptoms would return in the afternoon so we

added the same amount in the afternoon. I use to be kinda

scared to dose it and didn't want to give her too much.

However she did so well when we put her to a full cap.

Thats where we are at now. I believe the thinking is dose the

same amount in the morning as the afternoon. Thats is what

we are doing. Adrenal symptoms were gone even when we

were still at the 25mgs ala dmsa. I tried lowering back to half cap when we

dropped down to 12 mgs ala dmsa but she still needed the full cap.

Some kids need a few caps some need less. There is no right amount

for all kids just the right amount for yours. Don't be afraid to increase

until you find what works. You will know when you've gone too far.

Its been wonderful. Life is so much better with the adrenals support.

All the crying and melt downs are GONE! Makes mommy sooooo

happy.

Simone

On 2011-04-02, at 10:30 AM, mrboysmom wrote:

> What are you doing for the adrenal support? I'm using adrenal cortex extract

66mg 2x/day. Not sure if that is enough. Deb

>

>

> >

> > Hi,

> > We have been successfully plugging away for a few years at the A/C protocol.

> > For my daughter ( now 7 years old round 103 - 55lbs)

> > Adrenal support

> > Yeast

> > but what really did it was making sure we were not moving the dose up too

quickly.

> > This is a gal that had to start at 1-3 mgs . We have moved slowly slowly

slowly

> > over the years and have had tremendous gains. Many times when we moved up we

would

> > see this few day hangover. Trust me we moved up slowly. It seems like there

is a

> > perfect spot to be..sitting right on the fence...too little not enough

gains...too much adrenal

> > and hangovers. Even if logic seems to say its okay to move up and its just a

bit

> > so it should not be a problem and you have been at the dose forever well

......maybe its not time.

> > We had slowly worked our way up to 25 mgs. I was seeing the hangover

frequently.

> > We popped back down to 12 mgs and the hangover is gone but still seeing

tremendous gains.

> > We don't have to reach the goal of the maximum amount we have to reach the

goal of

> > the correct amount for right now. Not saying this is the case for either of

you.

> > This is not the case for everyone but it really seemed to be our round

hangover cure.

> > If you have adrenal support and your feel confident about your yeast

protocol then

> > see if you offer a lower dose and you still get this hangover.

> > Just a thought.

> > Simone

> >

> > > Blair,

> > >

> > > io am wondering this too. My son is very hyper and stimming is off the

wall

> > > for about two to three days off-round. I hope someone replies with an

idea.

> > >

> > > Haven

> > >

> > >

[Guest guest]

My son is getting 125 mg of GSE a day (divided in two doses) along with

d-biotin at 1000mcg twice a day, given when he takes the GSE.

He is on 50 mg of Thorne ACE twice a day. He also takes all the regular

supps for AC Protocol. We divided things up into four times a day. He gets

his probiotics at noon and bedtime (about four hours away from the GSE).

We are on round twelve, and there has been a lot more stimming/finger

flicking on this round and more hyperactivity where he runs down the hall

and throws himself up against the door.

On the othr hand, he is more with it. His auditory processing is much

better.

Am I giving enough ACE, GSE, and biotin? I don't know how to tell if this

is adrenal (I usual know if he is weepy, anxious, or clingy) This could be

yeast or it could be just metals moving around, so I am wondering if I

should be doing something else off round to help mop up anything floating

around?

The stimming is worrisome to me.

Haven

[Guest guest]

Hey Deb,

I agree you should try the increase.

Keep at it.

Mine was always in the - minus 10% for weight and growth. As the metals

came out and the stomach began to heal (GFCF - whole organic foods no additives,

preservatives or msg certainly helped here) she is finally at a perfect weight

and height

with amazing muscle tone.This just really happened in the last 8 months or so.

Really I had many doubts alone the way that we would ever see this outcome.

She has no problem with dairy any longer but we still leave it out. Gluten is

still

a problem. You don't have to do a special diet to chelate but I find it sure

helps

make the journey easier along the way.

Simone

On 2011-04-02, at 12:10 PM, mrboysmom wrote:

> Thank you for the feedback, Simone. I'm going to increase and see how it goes.

He is 16yo, 134 lbs skin and bones, seems like he could take more than I'm

giving. Deb

>

>

> > > >

> > > > Hi,

> > > > We have been successfully plugging away for a few years at the A/C

protocol.

> > > > For my daughter ( now 7 years old round 103 - 55lbs)

> > > > Adrenal support

> > > > Yeast

> > > > but what really did it was making sure we were not moving the dose up

too quickly.

> > > > This is a gal that had to start at 1-3 mgs . We have moved slowly slowly

slowly

> > > > over the years and have had tremendous gains. Many times when we moved

up we would

> > > > see this few day hangover. Trust me we moved up slowly. It seems like

there is a

> > > > perfect spot to be..sitting right on the fence...too little not enough

gains...too much adrenal

> > > > and hangovers. Even if logic seems to say its okay to move up and its

just a bit

> > > > so it should not be a problem and you have been at the dose forever well

......maybe its not time.

> > > > We had slowly worked our way up to 25 mgs. I was seeing the hangover

frequently.

> > > > We popped back down to 12 mgs and the hangover is gone but still seeing

tremendous gains.

> > > > We don't have to reach the goal of the maximum amount we have to reach

the goal of

> > > > the correct amount for right now. Not saying this is the case for either

of you.

> > > > This is not the case for everyone but it really seemed to be our round

hangover cure.

> > > > If you have adrenal support and your feel confident about your yeast

protocol then

> > > > see if you offer a lower dose and you still get this hangover.

> > > > Just a thought.

> > > > Simone

> > > >

> > > > > Blair,

> > > > >

> > > > > io am wondering this too. My son is very hyper and stimming is off the

wall

> > > > > for about two to three days off-round. I hope someone replies with an

idea.

> > > > >

> > > > > Haven

> > > > >

> > > > >

[Guest guest]

Hi Haven,

Sounds like you can try an increase on the ACE. When we support with

too little we are not accomplishing what we are trying to do which is

ease their symptoms but also help keep our sanity

I was always so cautious on this and wish I had met her needs sooner.

Finger licking can often be not enough zinc. Take a look at that. Zinc is

not absorbed well and some of our kids need a lot.

Sometimes we kill off too much yeast too fast and its pretty uncomfortable for

them.

I cant really comment on the amount used- we never used biotin as my girl

doesn't

tolerate B vitamins so we just stayed away and made it through without it.

We used Candex, GSE for the yeast. We had to use the GSE with food in her

tummy or it just hurt too much. Usually just squirt random amount in a capsule.

Big cap for lots of yeast little caps for little yeast. Sorry I was never much

for measuring

I tend to follow my " mummy gut " for most things.

Bacteria often follows the die off of yeast and can create aggression physically

and verbally. For this we used oil of oregano but some use Goldenseal.

When you kill off yeast often bacteria will come in to play and around and

around we do the yeast and bacteria dance. The more you chelate the less the

metals

the less the yeast. We are at the point that yeast just pops up once in a blue

moon and

is easily dealt with. Its been a long road but oh so worth traveling.

Not bragging just offering inspiration for you to keep going.

We had heard that some have had success with dropping the last two ala

doses and just giving the dmsa portion for the last two doses; as to not having

the metals that

are redistributing at the end of the round cross the Blood Brain Barrier.

We tried this in an attempt to control the after round hangover but didn't have

success with it. For us it was keeping the dose low, increasing very very slowly

and adrenal support. Chelating can be very hard on the adrenals.

Your right it can be difficult to figure out what is causing what. Trial and

error

Do no harm was what I always kept at the forefront.

Mine was a very very sensitive girl from birth and still is so we always tippy

toed

through it all but were making it!

Simone

On 2011-04-02, at 12:36 PM, Haven DeLay wrote:

> My son is getting 125 mg of GSE a day (divided in two doses) along with

> d-biotin at 1000mcg twice a day, given when he takes the GSE.

>

> He is on 50 mg of Thorne ACE twice a day. He also takes all the regular

> supps for AC Protocol. We divided things up into four times a day. He gets

> his probiotics at noon and bedtime (about four hours away from the GSE).

>

> We are on round twelve, and there has been a lot more stimming/finger

> flicking on this round and more hyperactivity where he runs down the hall

> and throws himself up against the door.

>

> On the othr hand, he is more with it. His auditory processing is much

> better.

>

> Am I giving enough ACE, GSE, and biotin? I don't know how to tell if this

> is adrenal (I usual know if he is weepy, anxious, or clingy) This could be

> yeast or it could be just metals moving around, so I am wondering if I

> should be doing something else off round to help mop up anything floating

> around?

>

> The stimming is worrisome to me.

>

> Haven

>

>

[Guest guest]

Hey ,

Hard to answer without knowing more.

Are you using DMSA also or just ALA?

What are the sensitivities? Is it headaches and or so much more??

Maybe....

ALA increases cysteine levels and its likely she may

already have high cysteine levels. Sometimes this

will show with a reaction to supplements and foods that are high in sulfur.

Sometimes sensitivities to supplements and foods that are high sulphur

will give you a clue on this. I understand that it can have an effect on

yeast and adrenals also. I guess you could try an sulphur exclusion trial?

Andy has lots of info about the connect of ala and cysteine levels in

onibasu.com archives.

Just a thought

Hope that helps

Simone

On 2011-04-02, at 2:41 PM, khieken wrote:

> Hi Simone,

> I completely understand what you are saying about the hangover effect with too

high a dose. My 10yo dd clearly fits into this scenario. Way too much adrenal

stress with even a 1mg increase in ALA. But, you know, she has always been a

very sensitive responder to supplements. We are on round 52, and she is still

just shy of the 1/8 mg/lb dose. I try desperately to get to this minimum dose,

but it just isn't worth it in terms of side effects. Any thoughts on

lower-than-low dose chelation?

>

>

>

>

> >

> > Hi,

> > We have been successfully plugging away for a few years at the A/C protocol.

> > For my daughter ( now 7 years old round 103 - 55lbs)

> > Adrenal support

> > Yeast

> > but what really did it was making sure we were not moving the dose up too

quickly.

> > This is a gal that had to start at 1-3 mgs . We have moved slowly slowly

slowly

> > over the years and have had tremendous gains. Many times when we moved up we

would

> > see this few day hangover. Trust me we moved up slowly. It seems like there

is a

> > perfect spot to be..sitting right on the fence...too little not enough

gains...too much adrenal

> > and hangovers. Even if logic seems to say its okay to move up and its just a

bit

> > so it should not be a problem and you have been at the dose forever well

......maybe its not time.

> > We had slowly worked our way up to 25 mgs. I was seeing the hangover

frequently.

> > We popped back down to 12 mgs and the hangover is gone but still seeing

tremendous gains.

> > We don't have to reach the goal of the maximum amount we have to reach the

goal of

> > the correct amount for right now. Not saying this is the case for either of

you.

> > This is not the case for everyone but it really seemed to be our round

hangover cure.

> > If you have adrenal support and your feel confident about your yeast

protocol then

> > see if you offer a lower dose and you still get this hangover.

> > Just a thought.

> > Simone

> >

> > > Blair,

> > >

> > > io am wondering this too. My son is very hyper and stimming is off the

wall

> > > for about two to three days off-round. I hope someone replies with an

idea.

> > >

> > > Haven

> > >

> > >

[Guest guest]

Simone,

Thanks for the input. We are doing ALA only. My son is a very reacitve

kid. We did IV back in 2006-2007, and my son wound up having severe

respriatory reactions, so we stopped. thenlast summer the DAN said he was

very high in lead and we should just chelate with EDTA IV. We di but ont he

fourth treatment, he had a very severe respiratory reaction.

Then the DAN wanted to keep doing it but give oral prednisone before each

treatment. We said hell no. We asked if he would go along with AC and he

acted like he wouldn't, and when we wouldn't do it his way he said, 'Well,

just leave the metals in there then. " That ticked me off.

My son was no longer stimming by around age four. His OCD, SID had all but

disappeared until we got talked into IV and then it all came back.

After the IV DMPS, he developed a sulfa reaction. He broke out in hives

after being given Bactrim for an infection, and he even broke out after

eating broccoli! He had eaten it just fine before.

I think the respiratory reactions were really a sign of adrenal fatigue --

maybe even a crisis. I just know that once we started AC and started using

ALA and ACE, that he has been healthier than he's ever been.

Before we started AC, he was needing his rescue inhaler almost daily, and we

were on the verge of realizing he would have to go back on steroids. I

dreaded that as they made him gain way too much weight. Then we started the

ALA and ACE, and in eleven weeks, he has only needed his rescue inhaler

three times!

He is on 100 mg ACE a day now. Maybe I will divide some capsules in fourths

and up the ACE a little and see? I'm pretty convinced now that a lot of his

respiratory problems he's had over the years was more an adrenal issue than

an allergy issue.

He is on 250 mg a day of GSE. Are there others who give more? Should I up

that, too? It is hard for me to tell if this is yeast or just metals moving

around.

We are going to see Dr. Rea again at the environmental health clinic

again in the near future to re-do food allergy testing again. My son has

always eaten peanut butter, but about three months ago, he took one bite,

and off to the hospital we had to go!

I see some very good improvements -- mainly health-wise, but I confess, the

excess stimming and finger flicking before his eyes makes me feel like I am

doing something wrong or missing something.

By weight he should be on about 18.75 mg, but we started with 12.5 and

haven't budged from there. I don't want to make things worse, but sometimes

i wonder if we should add some DMSA. It is hard to know what to do, and as

you say, " Do no harm. "

I have always thought stimming was food/yeast related.

He is on Pro Bio gold at noon and Culturelle at night. I've got to figure

this out. My gut tells me -- my intutition tellsme tht the stimming is

happeneing because I am missing something.

[Guest guest]

Hey ,

Yup sounds like my gal. From day one she was sensitive in the way you are

referring.

Long medical history with open heart surgeries and all the fun that goes with 4

month

stay in the hospital from birth and two years to get to the state we thought she

would

survive to 4 years that she could walk to the end of the driveway.

From day one she was sensitive and still is, just as you describe.

Sounds like you have the adrenals figured out - good for you.

My gals food sensitivities were the same - milk , gluten peanut and egg.

She can now have milk with no reaction but we still don't bother.

She chooses to avoid nuts even thought she is an amazing eater and eats anything

except celery.

We too are using one or two eggs - no reaction but don't want to push our

luck(yup sulphur)

Gluten still bothers her.

I do think I too should pursue the cysteine / ala / sulphur thing. I have always

been aware of

it but never really gone down that path. So many paths to go down hmmm

which one should I walk down this month.

When we first began the cutler protocol we had high fevers, some throwing and

nose bleeds. A rough

go of it. We were never more than 3 mgs for the longest time and never moved

quickly at

all. I was scared but kept it low and kept at it. The fevers are fairly normal

for lots of kids for the first few rounds and I was glad I

kept at it. We did 4 rounds or so of DMSA only and added the ALA in. She too

was not

someone who normally got sick and there was nothing going around.

After a few more rounds things worked out in that field and then we

began to chase the yeast beast. It all worked out okay and we saw lots

of great improvement after we made our way through it.

http://onibasu.com/wiki/Cysteine_status

Simone

On 2011-04-02, at 4:49 PM, khieken wrote:

> Hi Simone,

> Very interesting about cysteine and ALA, and the sulfur connection. I had

never heard that before. Maybe something to look into here. I will definitely

look into the archives. I was not very clear in my initial response. This is

what I meant about being a sensitive responder: she most always needs a lower

dose of supplements, meds, etc to be effective, and normal doses will cause side

effects. So for example with ACE, we had to start at a very low dose, probably

1/8th of a 250mg capsule, and slowly (over a month or 2) work up to a full

capsule. Too high of a dose would cause a lot of irritability. Now she takes

5caps/day, but again, it took a few months to get there. Food sensitivities are

to gluten, milk, peanuts. Used to have some trouble with eggs (which are high

sulfur, right?), but can tolerate 1-2/wk now.

>

> We have done 4 rounds of DMSA, not consecutive. First 2 weeks (which were

consecutive) she got the flu. I stopped the DMSA and waited a few more weeks,

then did 2 more weeks with DMSA and she got sick again. She's not a kid who gets

a lot of illnesses (anymore); my fear is the DMSA is lowering her neutrophils,

so I cut it for a while.

>

> Thanks so much for your help.

>

>

>

> > > >

> > > > Hi,

> > > > We have been successfully plugging away for a few years at the A/C

protocol.

> > > > For my daughter ( now 7 years old round 103 - 55lbs)

> > > > Adrenal support

> > > > Yeast

> > > > but what really did it was making sure we were not moving the dose up

too quickly.

> > > > This is a gal that had to start at 1-3 mgs . We have moved slowly slowly

slowly

> > > > over the years and have had tremendous gains. Many times when we moved

up we would

> > > > see this few day hangover. Trust me we moved up slowly. It seems like

there is a

> > > > perfect spot to be..sitting right on the fence...too little not enough

gains...too much adrenal

> > > > and hangovers. Even if logic seems to say its okay to move up and its

just a bit

> > > > so it should not be a problem and you have been at the dose forever well

......maybe its not time.

> > > > We had slowly worked our way up to 25 mgs. I was seeing the hangover

frequently.

> > > > We popped back down to 12 mgs and the hangover is gone but still seeing

tremendous gains.

> > > > We don't have to reach the goal of the maximum amount we have to reach

the goal of

> > > > the correct amount for right now. Not saying this is the case for either

of you.

> > > > This is not the case for everyone but it really seemed to be our round

hangover cure.

> > > > If you have adrenal support and your feel confident about your yeast

protocol then

> > > > see if you offer a lower dose and you still get this hangover.

> > > > Just a thought.

> > > > Simone

> > > >

> > > > > Blair,

> > > > >

> > > > > io am wondering this too. My son is very hyper and stimming is off the

wall

> > > > > for about two to three days off-round. I hope someone replies with an

idea.

> > > > >

> > > > > Haven

> > > > >

> > > > >

[Guest guest]

Lots goin on here hey Haven

I may be worth a closer look for you into

the whole cysteine an glutatione levels thing.

Ive read there is a strong tie to asthma and breathing difficulties.

We haven't had to deal with that here.

Sorry I haven't researched it much myself - Iooked at

it all last year a bit and I guess its time to get reading.

Ive just always read hand licking and zinc were friends.

Im sure its not the only cause but certainly a common one.

Doesn't hurt to try increasing the zinc a bit.

Simone

Article Source: http://EzineArticles.com/5305084

On 2011-04-02, at 4:00 PM, Haven DeLay wrote:

> Simone,

>

> Thanks for the input. We are doing ALA only. My son is a very reacitve

> kid. We did IV back in 2006-2007, and my son wound up having severe

> respriatory reactions, so we stopped. thenlast summer the DAN said he was

> very high in lead and we should just chelate with EDTA IV. We di but ont he

> fourth treatment, he had a very severe respiratory reaction.

>

> Then the DAN wanted to keep doing it but give oral prednisone before each

> treatment. We said hell no. We asked if he would go along with AC and he

> acted like he wouldn't, and when we wouldn't do it his way he said, 'Well,

> just leave the metals in there then. " That ticked me off.

>

> My son was no longer stimming by around age four. His OCD, SID had all but

> disappeared until we got talked into IV and then it all came back.

>

> After the IV DMPS, he developed a sulfa reaction. He broke out in hives

> after being given Bactrim for an infection, and he even broke out after

> eating broccoli! He had eaten it just fine before.

>

> I think the respiratory reactions were really a sign of adrenal fatigue --

> maybe even a crisis. I just know that once we started AC and started using

> ALA and ACE, that he has been healthier than he's ever been.

>

> Before we started AC, he was needing his rescue inhaler almost daily, and we

> were on the verge of realizing he would have to go back on steroids. I

> dreaded that as they made him gain way too much weight. Then we started the

> ALA and ACE, and in eleven weeks, he has only needed his rescue inhaler

> three times!

>

> He is on 100 mg ACE a day now. Maybe I will divide some capsules in fourths

> and up the ACE a little and see? I'm pretty convinced now that a lot of his

> respiratory problems he's had over the years was more an adrenal issue than

> an allergy issue.

>

> He is on 250 mg a day of GSE. Are there others who give more? Should I up

> that, too? It is hard for me to tell if this is yeast or just metals moving

> around.

>

> We are going to see Dr. Rea again at the environmental health clinic

> again in the near future to re-do food allergy testing again. My son has

> always eaten peanut butter, but about three months ago, he took one bite,

> and off to the hospital we had to go!

>

> I see some very good improvements -- mainly health-wise, but I confess, the

> excess stimming and finger flicking before his eyes makes me feel like I am

> doing something wrong or missing something.

>

> By weight he should be on about 18.75 mg, but we started with 12.5 and

> haven't budged from there. I don't want to make things worse, but sometimes

> i wonder if we should add some DMSA. It is hard to know what to do, and as

> you say, " Do no harm. "

>

> I have always thought stimming was food/yeast related.

>

> He is on Pro Bio gold at noon and Culturelle at night. I've got to figure

> this out. My gut tells me -- my intutition tellsme tht the stimming is

> happeneing because I am missing something.

>

>

[Guest guest]

Hi ,

She is 7 1/4 now. We are going on round 104.

My gal eats everything under the sun.

Except for gluten, and dairy. Its great way to eat

for someone who loves it all. If she was a picky eater

I wouldn't be so " chipper " about the subject. .We have never

had a problem being GFCF no additives or preservatives or msg

At this point its more of a life style choice for our family.

My husband and I don't need to be on it but

at this point we enjoy it but do cheat a bit when she's not looking.

So even though I think my daughter would benefit from

pursuing the sulphur/high thiol foods we don't follow it.

She enjoys the way she eats too much and the normalcy of it all.

We did do molybdenum for a year and stopped with no

change for her when we stopped. Keep reading. Lots of good bits

of info to trigger new thoughts and paths to explore.

So even though we are not doing everything we could or

should we still seem to be getting there. No one at this point

is aware she has/had autism. A few health quirks and issues but

not autism. She has been assessed again and no longer has

the label. Depending on the day bcs there are still rough days - some

she really truly seems NT and others she is obviously a girl still

struggling with issues. She still reacts strongly to chemicals

and all the bad stuff. (Her sensory issues, fine and major

motor issues were both huge at one time but now are almost

non existent the high majority of the time, )We have done very little therapy

with therapists

but I personally have worked tirelessly from day one.

She is in regular swim classes, on a regular softball team,

music school group piano class ppp, has best friends with wonderful normal NT

friendships and life

is good. She is still not fully recovered, really a ways to go

and will probably be doing another 100 rounds but its all been worth the low and

slow.

Bless you Andy!

Simone

On 2011-04-02, at 7:43 PM, khieken wrote:

> Thanks for sharing your story Simone. It is always helpful for me to hear

other people's experiences. How old is your daughter? How many rounds of

chelation are you at?

>

> I did a little research on sulfur/high thiol foods and supplements in the

meantime. Maybe something I should explore, but honestly, I can't imagine

eliminating yet more foods from our diet at this point. I think I will try to

watch for reactions after she eats some of the high thiol foods. I also saw that

molybdenum can be helpful - will maybe add that in and see if there are any

changes.

>

>

> > > > > >

> > > > > > Hi,

> > > > > > We have been successfully plugging away for a few years at the A/C

protocol.

> > > > > > For my daughter ( now 7 years old round 103 - 55lbs)

> > > > > > Adrenal support

> > > > > > Yeast

> > > > > > but what really did it was making sure we were not moving the dose

up too quickly.

> > > > > > This is a gal that had to start at 1-3 mgs . We have moved slowly

slowly slowly

> > > > > > over the years and have had tremendous gains. Many times when we

moved up we would

> > > > > > see this few day hangover. Trust me we moved up slowly. It seems

like there is a

> > > > > > perfect spot to be..sitting right on the fence...too little not

enough gains...too much adrenal

> > > > > > and hangovers. Even if logic seems to say its okay to move up and

its just a bit

> > > > > > so it should not be a problem and you have been at the dose forever

well .....maybe its not time.

> > > > > > We had slowly worked our way up to 25 mgs. I was seeing the hangover

frequently.

> > > > > > We popped back down to 12 mgs and the hangover is gone but still

seeing tremendous gains.

> > > > > > We don't have to reach the goal of the maximum amount we have to

reach the goal of

> > > > > > the correct amount for right now. Not saying this is the case for

either of you.

> > > > > > This is not the case for everyone but it really seemed to be our

round hangover cure.

> > > > > > If you have adrenal support and your feel confident about your yeast

protocol then

> > > > > > see if you offer a lower dose and you still get this hangover.

> > > > > > Just a thought.

> > > > > > Simone

> > > > > >

> > > > > > > Blair,

> > > > > > >

> > > > > > > io am wondering this too. My son is very hyper and stimming is off

the wall

> > > > > > > for about two to three days off-round. I hope someone replies with

an idea.

> > > > > > >

> > > > > > > Haven

> > > > > > >

> > > > > > >

[Guest guest]

Hi ,

We have always just used lots of Himalayan sea salt and no iodized table salt.

Its great a no guilt way to have lots of salt/mineral and its good for you.

Any other suggestions?

As for the Ph my gal has always been higlhy acidic but we have had some success

with using LiverLIfe - lots of milk thistle

and drinking organic lemon juice ( use acidic to make the tummy alkaline)

followed by a xylitol rinse for the teeth so that they are not

covered i the lemon juice acid)

Can you share some of the secrets you have used.

SImone

On 2011-04-02, at 8:07 PM, michele_in_california wrote:

>

>

> >

> > Thanks Michele - You gave me a good laugh! I don't see any profanities and

appreciate that you're a straight-shooter.

>

> I changed the offending word to " darn " ( " best darn sow's ear... " ).

>

> >

> > How did you determine that your problem was with low sodium, unbalanced pH,

etc?

> >

>

> The PH thing started with an online conversation with someone with rheumatoid

arthritis who commented on modifying diet to reduce acidity so as to reduce need

for anti-inflammatory drugs. I was having a miserable day and debating whether

or not to take yet more medication and after chatting online with this person, I

jumped up and put baking soda in a glass of water, drank some of it and got

instant relief for the lung inflammation that was making me think about taking

yet more meds. From there, I did lots more research. It turns out that Cystic

Fibrosis is basically an inflammatory condition, it is well known that people

with CF are typically waaay too acid, controlling inflammation in people with CF

is proven to reduce incidence of infection...etc...etc....and then I tripped

across the info about acidity and such causing proteins to misfold. As I

understand it, most genetic disorders involve a misfolded/miscoded protein. So I

am kind of guessing your child may have either some inherent (unrecognized) mild

genetic disorder OR is so toxic that the body chemistry is causing the types of

problems typical of genetic disorders by causing proteins to misfold and thus

causing bottlenecks because there aren't enough channels into and out of the

cells to process stuff efficiently. But that's a very BIG, BIG guess.

>

> However, if what you really wanted to know with your question was how to

determine something like that for your child, some folks on this list have used

PH strips to test saliva and/or urine.

>

> The salt issue is very well established as a problem for my genetic disorder.

It is so well established that people with CF purge salt at high rates that the

most common test for CF is a 'sweat chloride' test -- ie they test just how

salty your sweat is. To apply it to your situation, I would look for symptoms,

like adrenal stress, that indicate salt and/or other minerals are deficient.

>

> HTH and good luck.

>

> Michele

> http://www.healthgazelle.com

> http://www.kidslikemine.com

>

>

[Guest guest]

" I always think that parents of NT children have absolutely no clue how much

more we do as parents of non-NT kids "

Amen to that !

Simone

On 2011-04-03, at 7:59 AM, khieken wrote:

> So great to have such huge improvements. I feel we have come such a long way

too, and I would like to keep it going. For a while I never thought our lives

would look " normal " but we are getting closer and closer to that, and I'm loving

it!

>

> I can guess that you have probably spent every waking minute trying to figure

out how to help your girl. I always think that parents of NT children have

absolutely no clue how much more we do as parents of non-NT kids.

>

>

>

>

> > > > > > > >

> > > > > > > > Hi,

> > > > > > > > We have been successfully plugging away for a few years at the

A/C protocol.

> > > > > > > > For my daughter ( now 7 years old round 103 - 55lbs)

> > > > > > > > Adrenal support

> > > > > > > > Yeast

> > > > > > > > but what really did it was making sure we were not moving the

dose up too quickly.

> > > > > > > > This is a gal that had to start at 1-3 mgs . We have moved

slowly slowly slowly

> > > > > > > > over the years and have had tremendous gains. Many times when we

moved up we would

> > > > > > > > see this few day hangover. Trust me we moved up slowly. It seems

like there is a

> > > > > > > > perfect spot to be..sitting right on the fence...too little not

enough gains...too much adrenal

> > > > > > > > and hangovers. Even if logic seems to say its okay to move up

and its just a bit

> > > > > > > > so it should not be a problem and you have been at the dose

forever well .....maybe its not time.

> > > > > > > > We had slowly worked our way up to 25 mgs. I was seeing the

hangover frequently.

> > > > > > > > We popped back down to 12 mgs and the hangover is gone but still

seeing tremendous gains.

> > > > > > > > We don't have to reach the goal of the maximum amount we have to

reach the goal of

> > > > > > > > the correct amount for right now. Not saying this is the case

for either of you.

> > > > > > > > This is not the case for everyone but it really seemed to be our

round hangover cure.

> > > > > > > > If you have adrenal support and your feel confident about your

yeast protocol then

> > > > > > > > see if you offer a lower dose and you still get this hangover.

> > > > > > > > Just a thought.

> > > > > > > > Simone

> > > > > > > >

> > > > > > > > > Blair,

> > > > > > > > >

> > > > > > > > > io am wondering this too. My son is very hyper and stimming is

off the wall

> > > > > > > > > for about two to three days off-round. I hope someone replies

with an idea.

> > > > > > > > >

> > > > > > > > > Haven

> > > > > > > > >

> > > > > > > > >

[Guest guest]

Irene,

Thanks. I will gradually up his ACE. We are giving it twice a day. Should

they get it more often? should I give it four times a day?

I am pretty sure the GSE is a problem. As soon as he started taking it, his

cheeks and ears got very red, so I am sure he has some issues with phenolic

foods. He has been gf/cf/sf since 2002 (we gradually took the things away

over the course of year). I also suspected phenols were giving him a

problem, but the kid has to be able to eat something. He doesn't get reall

red ears or cheeks from fruit like apples or tomatoes - which I know are

phenolic. But the GSE -- it was very noticeable.

So I give him NO FENOL when he gets GSE, but the GSE could still be

casueding hte problem? What are some other natural yeast fighters?

The other possibility I am thinking about is that the ALA raises cysteine.

I know at one time the DAN put him on cysteine, and he did not react well to

that. I may have to eliminate for sulfur foods from his diet? I hate to do

this as we finally got him to eat some veggies. The first was broccoli, and

then one day he broke out in hives after eating it, so he hasn't had that

since.

Now he will eat cabbage and Brussels Sprouts. He loves " Very veggie " type

lettuce salads with carrots, radish, cucumber etc... We make the dressing

with a littel virgin olive oil and lemon juice. He also loves raw tomato

salads. He loves cauliflower now too. He loves Avocados, as well.

I know some of the foods I mentioned are sulfur foods. this is why I am

taking him to get the food allergy testing done again. We haven't tested

him in years, and I think some things have changed. One doc says take him

off of meat, another says low oxalate. It is hard to know who is right, and

then my son winds up being down to almost nothing he is allowed to eat.

So my plan is to do the food allergy testing and then get him back on a

rotation diet.

He is not picky about the meat he eats. He will eat just about any type of

ground meat, including venison, lamb, buffalo.

I just don't think he should be stimming and flicking his fingers in front

of his eyes as much as he is doing this. I also noticed that he was more

sound sensitive this morning (we are on day 3 of round twelve). He had one

finger in one ear while he got ice cubes from the ice maker. I thought that

was being pretty sound sensitive.

When my son misplaces things, he is quick to get anxious and upset. I found

that I was able to calm him down by acting excited and happy and saying

" It's a mystery! Let's solve it together! "

This is how I feel now -- this is a mystery, and I intend to find the

solution?

As I said before, I wonder if it could just be metals moving around, but my

instict says that is not the case.

let me know of other natural yeast fighters. I might want to take him off

the GSE and try the other. He was on all kinds of anti-fungals at one time

or another. I think the prescription ones quite working long ago, and I was

not happy about him being on those long term.

Thanks for all your help,

Haven

[Guest guest]

Thanks for the advice. I thought OOO was just for bacteria -- sometimes I

can't keep it all straight, but I am glad we are heading toward doing IgG

testing and then maybe we will have some answers, but symptoms tell me that

he's having problems with the GSE. I have some OOO. It says it is pure, no

alcohol, no addtives, gf/cf/sf and sodiaum free. Is this what you are

talking about? It does not say " emulsified " though on the bottle.

How much would I give to a 142 pound boy? My son is 5'3 " . He is a big kid

-- years of steroids didn't help his weight. It is also hard to get a good

phsyical regimine going when you are sick every two weeks. He has been

healthy relatively since September and we started with yoga and walking,

trying to build his stamina up. he also goes on the elliptical machine, but

we are going slowly to build up his stamina.

If I can't use the brand we have on hand: Herbal Authority, what brand did

you use? where to buy and how much do I start with?

Thanks,

Haven

[Guest guest]

" Use acidic to make the tummy alkaline " . Can you elaborate it a bit more?

It would be great if you can provide some reading on that. I would love

to learn more about the theory. Some of the info online

made me even more confused

Thanks!

April

Re: [ ] Re: Does anyone have an " after round "

protocol?

> Hi ,

>

> We have always just used lots of Himalayan sea salt and no iodized table

> salt. Its great a no guilt way to have lots of salt/mineral and its good

> for you.

> Any other suggestions?

>

> As for the Ph my gal has always been higlhy acidic but we have had some

> success with using LiverLIfe - lots of milk thistle

> and drinking organic lemon juice ( use acidic to make the tummy alkaline)

> followed by a xylitol rinse for the teeth so that they are not

> covered i the lemon juice acid)

>

> Can you share some of the secrets you have used.

>

> SImone

>

> On 2011-04-02, at 8:07 PM, michele_in_california wrote:

>

>>

>>

>> >

>> > Thanks Michele - You gave me a good laugh! I don't see any profanities

>> > and appreciate that you're a straight-shooter.

>>

>> I changed the offending word to " darn " ( " best darn sow's ear... " ).

>>

>> >

>> > How did you determine that your problem was with low sodium, unbalanced

>> > pH, etc?

>> >

>>

>> The PH thing started with an online conversation with someone with

>> rheumatoid arthritis who commented on modifying diet to reduce acidity so

>> as to reduce need for anti-inflammatory drugs. I was having a miserable

>> day and debating whether or not to take yet more medication and after

>> chatting online with this person, I jumped up and put baking soda in a

>> glass of water, drank some of it and got instant relief for the lung

>> inflammation that was making me think about taking yet more meds. From

>> there, I did lots more research. It turns out that Cystic Fibrosis is

>> basically an inflammatory condition, it is well known that people with CF

>> are typically waaay too acid, controlling inflammation in people with CF

>> is proven to reduce incidence of infection...etc...etc....and then I

>> tripped across the info about acidity and such causing proteins to

>> misfold. As I understand it, most genetic disorders involve a

>> misfolded/miscoded protein. So I am kind of guessing your child may have

>> either some inherent (unrecognized) mild genetic disorder OR is so toxic

>> that the body chemistry is causing the types of problems typical of

>> genetic disorders by causing proteins to misfold and thus causing

>> bottlenecks because there aren't enough channels into and out of the

>> cells to process stuff efficiently. But that's a very BIG, BIG guess.

>>

>> However, if what you really wanted to know with your question was how to

>> determine something like that for your child, some folks on this list

>> have used PH strips to test saliva and/or urine.

>>

>> The salt issue is very well established as a problem for my genetic

>> disorder. It is so well established that people with CF purge salt at

>> high rates that the most common test for CF is a 'sweat chloride' test --

>> ie they test just how salty your sweat is. To apply it to your situation,

>> I would look for symptoms, like adrenal stress, that indicate salt and/or

>> other minerals are deficient.

>>

>> HTH and good luck.

>>

>> Michele

>> http://www.healthgazelle.com

>> http://www.kidslikemine.com

>>

>>

>

>

>

>

[Guest guest]

Hi April,

Its pretty straightforward stuff. I don't really have any scientific articles on

hand.

The first thing that came up when I googled it

http://www.ehow.com/how_4964609_make-body-alkaline.html

Organic apple cider vinegar has the same effect but

my daughter has a tough time with it. It hurts her tummy but

the lemon and fresh fruit is a gentle approach.

Simone

On 2011-04-04, at 12:25 AM, April itz wrote:

> " Use acidic to make the tummy alkaline " . Can you elaborate it a bit more?

> It would be great if you can provide some reading on that. I would love

> to learn more about the theory. Some of the info online

> made me even more confused

> Thanks!

>

> April

>

> Re: [ ] Re: Does anyone have an " after round "

> protocol?

>

> > Hi ,

> >

> > We have always just used lots of Himalayan sea salt and no iodized table

> > salt. Its great a no guilt way to have lots of salt/mineral and its good

> > for you.

> > Any other suggestions?

> >

> > As for the Ph my gal has always been higlhy acidic but we have had some

> > success with using LiverLIfe - lots of milk thistle

> > and drinking organic lemon juice ( use acidic to make the tummy alkaline)

> > followed by a xylitol rinse for the teeth so that they are not

> > covered i the lemon juice acid)

> >

> > Can you share some of the secrets you have used.

> >

> > SImone

> >

> > On 2011-04-02, at 8:07 PM, michele_in_california wrote:

> >

> >>

> >>

> >> >

> >> > Thanks Michele - You gave me a good laugh! I don't see any profanities

> >> > and appreciate that you're a straight-shooter.

> >>

> >> I changed the offending word to " darn " ( " best darn sow's ear... " ).

> >>

> >> >

> >> > How did you determine that your problem was with low sodium, unbalanced

> >> > pH, etc?

> >> >

> >>

> >> The PH thing started with an online conversation with someone with

> >> rheumatoid arthritis who commented on modifying diet to reduce acidity so

> >> as to reduce need for anti-inflammatory drugs. I was having a miserable

> >> day and debating whether or not to take yet more medication and after

> >> chatting online with this person, I jumped up and put baking soda in a

> >> glass of water, drank some of it and got instant relief for the lung

> >> inflammation that was making me think about taking yet more meds. From

> >> there, I did lots more research. It turns out that Cystic Fibrosis is

> >> basically an inflammatory condition, it is well known that people with CF

> >> are typically waaay too acid, controlling inflammation in people with CF

> >> is proven to reduce incidence of infection...etc...etc....and then I

> >> tripped across the info about acidity and such causing proteins to

> >> misfold. As I understand it, most genetic disorders involve a

> >> misfolded/miscoded protein. So I am kind of guessing your child may have

> >> either some inherent (unrecognized) mild genetic disorder OR is so toxic

> >> that the body chemistry is causing the types of problems typical of

> >> genetic disorders by causing proteins to misfold and thus causing

> >> bottlenecks because there aren't enough channels into and out of the

> >> cells to process stuff efficiently. But that's a very BIG, BIG guess.

> >>

> >> However, if what you really wanted to know with your question was how to

> >> determine something like that for your child, some folks on this list

> >> have used PH strips to test saliva and/or urine.

> >>

> >> The salt issue is very well established as a problem for my genetic

> >> disorder. It is so well established that people with CF purge salt at

> >> high rates that the most common test for CF is a 'sweat chloride' test --

> >> ie they test just how salty your sweat is. To apply it to your situation,

> >> I would look for symptoms, like adrenal stress, that indicate salt and/or

> >> other minerals are deficient.

> >>

> >> HTH and good luck.

> >>

> >> Michele

> >> http://www.healthgazelle.com

> >> http://www.kidslikemine.com

> >>

> >>

> >

> >

> >

> >

[Guest guest]

Hi Simone,

Thanks for the quick reply. Yea, I also googled it in the past, and found

some conflicting info For example, some website claims that carrot will

raise alkalinity, but some says the opposite. Berry is another example.

For some reason, however, lemon seems very consistent; all the articles I

have read recommend it.

I thought if I can find some scientific study on this subject, I can be more

sure of it.

April

Re: [ ] Re: Does anyone have an " after round "

>> protocol?

>>

>> > Hi ,

>> >

>> > We have always just used lots of Himalayan sea salt and no iodized

>> > table

>> > salt. Its great a no guilt way to have lots of salt/mineral and its

>> > good

>> > for you.

>> > Any other suggestions?

>> >

>> > As for the Ph my gal has always been higlhy acidic but we have had some

>> > success with using LiverLIfe - lots of milk thistle

>> > and drinking organic lemon juice ( use acidic to make the tummy

>> > alkaline)

>> > followed by a xylitol rinse for the teeth so that they are not

>> > covered i the lemon juice acid)

>> >

>> > Can you share some of the secrets you have used.

>> >

>> > SImone

>> >

>> > On 2011-04-02, at 8:07 PM, michele_in_california wrote:

>> >

>> >>

>> >>

>> >> >

>> >> > Thanks Michele - You gave me a good laugh! I don't see any

>> >> > profanities

>> >> > and appreciate that you're a straight-shooter.

>> >>

>> >> I changed the offending word to " darn " ( " best darn sow's ear... " ).

>> >>

>> >> >

>> >> > How did you determine that your problem was with low sodium,

>> >> > unbalanced

>> >> > pH, etc?

>> >> >

>> >>

>> >> The PH thing started with an online conversation with someone with

>> >> rheumatoid arthritis who commented on modifying diet to reduce acidity

>> >> so

>> >> as to reduce need for anti-inflammatory drugs. I was having a

>> >> miserable

>> >> day and debating whether or not to take yet more medication and after

>> >> chatting online with this person, I jumped up and put baking soda in a

>> >> glass of water, drank some of it and got instant relief for the lung

>> >> inflammation that was making me think about taking yet more meds. From

>> >> there, I did lots more research. It turns out that Cystic Fibrosis is

>> >> basically an inflammatory condition, it is well known that people with

>> >> CF

>> >> are typically waaay too acid, controlling inflammation in people with

>> >> CF

>> >> is proven to reduce incidence of infection...etc...etc....and then I

>> >> tripped across the info about acidity and such causing proteins to

>> >> misfold. As I understand it, most genetic disorders involve a

>> >> misfolded/miscoded protein. So I am kind of guessing your child may

>> >> have

>> >> either some inherent (unrecognized) mild genetic disorder OR is so

>> >> toxic

>> >> that the body chemistry is causing the types of problems typical of

>> >> genetic disorders by causing proteins to misfold and thus causing

>> >> bottlenecks because there aren't enough channels into and out of the

>> >> cells to process stuff efficiently. But that's a very BIG, BIG guess.

>> >>

>> >> However, if what you really wanted to know with your question was how

>> >> to

>> >> determine something like that for your child, some folks on this list

>> >> have used PH strips to test saliva and/or urine.

>> >>

>> >> The salt issue is very well established as a problem for my genetic

>> >> disorder. It is so well established that people with CF purge salt at

>> >> high rates that the most common test for CF is a 'sweat chloride'

>> >> test --

>> >> ie they test just how salty your sweat is. To apply it to your

>> >> situation,

>> >> I would look for symptoms, like adrenal stress, that indicate salt

>> >> and/or

>> >> other minerals are deficient.

>> >>

>> >> HTH and good luck.

>> >>

>> >> Michele

>> >> http://www.healthgazelle.com

>> >> http://www.kidslikemine.com

>> >>

>> >>

>> >

>> >

>> >

>> >