appt with metabolics consultant

[Guest guest]

Thought it would be useful to update on our recent metabolic appt. Hope you're

reading this Nevin. (sorry this is long)

Saw NHS metabolic consultant and presented YASKO genetic results along with

clinical tests done at Breakspear (methylation panel) to show suggested genetic

predisposition and actual clinical situation.

Concentrated on CBS upregualtion and probable low BH4(as these are key to my 2

kids).

Dr (although very nice) was not aware of a role of BH4 in elimination of ammonia

- this worries me as it is well documented and you don't have to look far to

find this info. Apparantly they can test BH4 levels with a finger prick and send

card to switzerland (this would usually be for PKU patients) I didn't push for

this test as we are considering doing it at Breakspear. If we do test we also

need to test for BH2 conversion to BH4 not just overall BH4 levels. We have

also been working hard to increase BH4 naturally for last 6 months and I thought

if they did test and result is not too low it would discredit all I was

presenting.

He kept comparing to PKU patients who are low in BH4 and said they did not have

urea cycle problems. I could not drum in that this was probably because they

don't have the other problems causing the big increase in ammonia.

He said that urine ammonia levels were not accurate and they would only look at

blood - again I could not get it through to him that we also need to look at

what the body is eliminating. Even if blood levels are not elevated, if ammonia

is continually produced at higher levels what effect does this have on the body

i.e low levels of BH4 and kidney stress. The symptoms my kids suffer are not

high ammonia - they are low BH$ because of having to remove too much ammonia!!!

In relation to CBS upregulation, he read the info and said if this was the case

we would see low methionine on amino acid test. At this point I handed urine

amino acid tests for both kids showing very low methionine - he started to

listen but then said again they would only consider blood results. He actually

did blood AA's on my kids last year and methionine was only 14. This actually

confirmed the problem with NHS testing - their range for methionine is from 0 so

if someone has continually low methionine unless this is been looked for it

would not get picked up.

He did confirm that continual low methionine needed treatment (this is why

Breakspear have suggested methyl B12 injections). I asked if he would do bloods

to check and he agreed but only when the Kids are having venous sample taken for

something else.

I plan to write to him asking for these tests to be done straight away as

otherwise we will have corrected it AGAIN taking any resposibility from NHS.

For Charlie (asd) I am quite happy to go this journey without NHS input but for

my daughter who has blood disorder I can't. She is under so many

consultants I have no choice but to tell them what I am doing. The YASKO

testing has uncovered how to help her blood disorder by bypassing her gentic

mutations and I'm determined to make them treat her (LOL!!!)

I have also eventually managed to get some BH4 - currently in freezer, waiting

until after Christmas to be brave enough to try (understand can cause huge detox

initially)!.

Have appt with genetics just after Christmas to investigate link with Charlie

(asd) and , (blood disorder no asd but lots of asd traits). In our case

they are definitely connected and both a result of biochemical

inbalances/errors.

BW

Alison R

[Guest guest]

Well done for keeping on keeping on Alison,you are doing great job

Mx

Thought it would be useful to update on our recent metabolic appt. Hope you're reading this Nevin. (sorry this is long)Saw NHS metabolic consultant and presented YASKO genetic results along with clinical tests done at Breakspear (methylation panel) to show suggested genetic predisposition and actual clinical situation.Concentrated on CBS upregualtion and probable low BH4(as these are key to my 2 kids).Dr (although very nice) was not aware of a role of BH4 in elimination of ammonia - this worries me as it is well documented and you don't have to look far to find this info. Apparantly they can test BH4 levels with a finger prick and send card to switzerland (this would usually be for PKU patients) I didn't push for this test as we are considering doing it at Breakspear. If we do test we also need to test for BH2 conversion to BH4 not just overall BH4 levels. We have also been working hard to increase BH4 naturally for last 6 months and I thought if they did test and result is not too low it would discredit all I was presenting.He kept comparing to PKU patients who are low in BH4 and said they did not have urea cycle problems. I could not drum in that this was probably because they don't have the other problems causing the big increase in ammonia.He said that urine ammonia levels were not accurate and they would only look at blood - again I could not get it through to him that we also need to look at what the body is eliminating. Even if blood levels are not elevated, if ammonia is continually produced at higher levels what effect does this have on the body i.e low levels of BH4 and kidney stress. The symptoms my kids suffer are not high ammonia - they are low BH$ because of having to remove too much ammonia!!!In relation to CBS upregulation, he read the info and said if this was the case we would see low methionine on amino acid test. At this point I handed urine amino acid tests for both kids showing very low methionine - he started to listen but then said again they would only consider blood results. He actually did blood AA's on my kids last year and methionine was only 14. This actually confirmed the problem with NHS testing - their range for methionine is from 0 so if someone has continually low methionine unless this is been looked for it would not get picked up.He did confirm that continual low methionine needed treatment (this is why Breakspear have suggested methyl B12 injections). I asked if he would do bloods to check and he agreed but only when the Kids are having venous sample taken for something else.I plan to write to him asking for these tests to be done straight away as otherwise we will have corrected it AGAIN taking any resposibility from NHS.For Charlie (asd) I am quite happy to go this journey without NHS input but for my daughter who has blood disorder I can't. She is under so many consultants I have no choice but to tell them what I am doing. The YASKO testing has uncovered how to help her blood disorder by bypassing her gentic mutations and I'm determined to make them treat her (LOL!!!)I have also eventually managed to get some BH4 - currently in freezer, waiting until after Christmas to be brave enough to try (understand can cause huge detox initially)!.Have appt with genetics just after Christmas to investigate link with Charlie (asd) and , (blood disorder no asd but lots of asd traits). In our case they are definitely connected and both a result of biochemical inbalances/errors.BWAlison R

[Guest guest]

DO you happen to know if DE detoxes the gi ammonia? and/or systemic ammonia?

Thanks,

>

> Well done for keeping on keeping on Alison,you are doing great job

>

> Mx

>

>

> In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> rowbotham.alison@... writes:

>

>

>

>

> Thought it would be useful to update on our recent metabolic appt. Hope

> you're reading this Nevin. (sorry this is long)

>

> Saw NHS metabolic consultant and presented YASKO genetic results along

> with clinical tests done at Breakspear (methylation panel) to show suggested

> genetic predisposition and actual clinical situation.

>

> Concentrated on CBS upregualtion and probable low BH4(as these are key to

> my 2 kids).

>

> Dr (although very nice) was not aware of a role of BH4 in elimination of

> ammonia - this worries me as it is well documented and you don't have to

> look far to find this info. Apparantly they can test BH4 levels with a finger

> prick and send card to switzerland (this would usually be for PKU patients)

> I didn't push for this test as we are considering doing it at Breakspear.

> If we do test we also need to test for BH2 conversion to BH4 not just

> overall BH4 levels. We have also been working hard to increase BH4 naturally

for

> last 6 months and I thought if they did test and result is not too low it w

> ould discredit all I was presenting.

>

> He kept comparing to PKU patients who are low in BH4 and said they did not

> have urea cycle problems. I could not drum in that this was probably

> because they don't have the other problems causing the big increase in

ammonia.

>

> He said that urine ammonia levels were not accurate and they would only

> look at blood - again I could not get it through to him that we also need to

> look at what the body is eliminating. Even if blood levels are not

> elevated, if ammonia is continually produced at higher levels what effect

does this

> have on the body i.e low levels of BH4 and kidney stress. The symptoms my

> kids suffer are not high ammonia - they are low BH$ because of having to

> remove too much ammonia!!!

>

> In relation to CBS upregulation, he read the info and said if this was the

> case we would see low methionine on amino acid test. At this point I

> handed urine amino acid tests for both kids showing very low methionine - he

> started to listen but then said again they would only consider blood results.

> He actually did blood AA's on my kids last year and methionine was only 14.

> This actually confirmed the problem with NHS testing - their range for

> methionine is from 0 so if someone has continually low methionine unless this

> is been looked for it would not get picked up.

>

> He did confirm that continual low methionine needed treatment (this is why

> Breakspear have suggested methyl B12 injections). I asked if he would do

> bloods to check and he agreed but only when the Kids are having venous

> sample taken for something else.

>

> I plan to write to him asking for these tests to be done straight away as

> otherwise we will have corrected it AGAIN taking any resposibility from NHS.

>

> For Charlie (asd) I am quite happy to go this journey without NHS input

> but for my daughter who has blood disorder I can't. She is under so many

> consultants I have no choice but to tell them what I am doing. The YASKO

> testing has uncovered how to help her blood disorder by bypassing her gentic

> mutations and I'm determined to make them treat her (LOL!!!)

>

> I have also eventually managed to get some BH4 - currently in freezer,

> waiting until after Christmas to be brave enough to try (understand can cause

> huge detox initially)!.

>

> Have appt with genetics just after Christmas to investigate link with

> Charlie (asd) and , (blood disorder no asd but lots of asd traits). In

our

> case they are definitely connected and both a result of biochemical

> inbalances/errors.

>

> BW

>

> Alison R

>

[Guest guest]

DO you happen to know if DE detoxes the gi ammonia? and/or systemic ammonia?

Thanks,

>

> Well done for keeping on keeping on Alison,you are doing great job

>

> Mx

>

>

> In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> rowbotham.alison@... writes:

>

>

>

>

> Thought it would be useful to update on our recent metabolic appt. Hope

> you're reading this Nevin. (sorry this is long)

>

> Saw NHS metabolic consultant and presented YASKO genetic results along

> with clinical tests done at Breakspear (methylation panel) to show suggested

> genetic predisposition and actual clinical situation.

>

> Concentrated on CBS upregualtion and probable low BH4(as these are key to

> my 2 kids).

>

> Dr (although very nice) was not aware of a role of BH4 in elimination of

> ammonia - this worries me as it is well documented and you don't have to

> look far to find this info. Apparantly they can test BH4 levels with a finger

> prick and send card to switzerland (this would usually be for PKU patients)

> I didn't push for this test as we are considering doing it at Breakspear.

> If we do test we also need to test for BH2 conversion to BH4 not just

> overall BH4 levels. We have also been working hard to increase BH4 naturally

for

> last 6 months and I thought if they did test and result is not too low it w

> ould discredit all I was presenting.

>

> He kept comparing to PKU patients who are low in BH4 and said they did not

> have urea cycle problems. I could not drum in that this was probably

> because they don't have the other problems causing the big increase in

ammonia.

>

> He said that urine ammonia levels were not accurate and they would only

> look at blood - again I could not get it through to him that we also need to

> look at what the body is eliminating. Even if blood levels are not

> elevated, if ammonia is continually produced at higher levels what effect

does this

> have on the body i.e low levels of BH4 and kidney stress. The symptoms my

> kids suffer are not high ammonia - they are low BH$ because of having to

> remove too much ammonia!!!

>

> In relation to CBS upregulation, he read the info and said if this was the

> case we would see low methionine on amino acid test. At this point I

> handed urine amino acid tests for both kids showing very low methionine - he

> started to listen but then said again they would only consider blood results.

> He actually did blood AA's on my kids last year and methionine was only 14.

> This actually confirmed the problem with NHS testing - their range for

> methionine is from 0 so if someone has continually low methionine unless this

> is been looked for it would not get picked up.

>

> He did confirm that continual low methionine needed treatment (this is why

> Breakspear have suggested methyl B12 injections). I asked if he would do

> bloods to check and he agreed but only when the Kids are having venous

> sample taken for something else.

>

> I plan to write to him asking for these tests to be done straight away as

> otherwise we will have corrected it AGAIN taking any resposibility from NHS.

>

> For Charlie (asd) I am quite happy to go this journey without NHS input

> but for my daughter who has blood disorder I can't. She is under so many

> consultants I have no choice but to tell them what I am doing. The YASKO

> testing has uncovered how to help her blood disorder by bypassing her gentic

> mutations and I'm determined to make them treat her (LOL!!!)

>

> I have also eventually managed to get some BH4 - currently in freezer,

> waiting until after Christmas to be brave enough to try (understand can cause

> huge detox initially)!.

>

> Have appt with genetics just after Christmas to investigate link with

> Charlie (asd) and , (blood disorder no asd but lots of asd traits). In

our

> case they are definitely connected and both a result of biochemical

> inbalances/errors.

>

> BW

>

> Alison R

>

[Guest guest]

DO you happen to know if DE detoxes the gi ammonia? and/or systemic ammonia?

Thanks,

>

> Well done for keeping on keeping on Alison,you are doing great job

>

> Mx

>

>

> In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> rowbotham.alison@... writes:

>

>

>

>

> Thought it would be useful to update on our recent metabolic appt. Hope

> you're reading this Nevin. (sorry this is long)

>

> Saw NHS metabolic consultant and presented YASKO genetic results along

> with clinical tests done at Breakspear (methylation panel) to show suggested

> genetic predisposition and actual clinical situation.

>

> Concentrated on CBS upregualtion and probable low BH4(as these are key to

> my 2 kids).

>

> Dr (although very nice) was not aware of a role of BH4 in elimination of

> ammonia - this worries me as it is well documented and you don't have to

> look far to find this info. Apparantly they can test BH4 levels with a finger

> prick and send card to switzerland (this would usually be for PKU patients)

> I didn't push for this test as we are considering doing it at Breakspear.

> If we do test we also need to test for BH2 conversion to BH4 not just

> overall BH4 levels. We have also been working hard to increase BH4 naturally

for

> last 6 months and I thought if they did test and result is not too low it w

> ould discredit all I was presenting.

>

> He kept comparing to PKU patients who are low in BH4 and said they did not

> have urea cycle problems. I could not drum in that this was probably

> because they don't have the other problems causing the big increase in

ammonia.

>

> He said that urine ammonia levels were not accurate and they would only

> look at blood - again I could not get it through to him that we also need to

> look at what the body is eliminating. Even if blood levels are not

> elevated, if ammonia is continually produced at higher levels what effect

does this

> have on the body i.e low levels of BH4 and kidney stress. The symptoms my

> kids suffer are not high ammonia - they are low BH$ because of having to

> remove too much ammonia!!!

>

> In relation to CBS upregulation, he read the info and said if this was the

> case we would see low methionine on amino acid test. At this point I

> handed urine amino acid tests for both kids showing very low methionine - he

> started to listen but then said again they would only consider blood results.

> He actually did blood AA's on my kids last year and methionine was only 14.

> This actually confirmed the problem with NHS testing - their range for

> methionine is from 0 so if someone has continually low methionine unless this

> is been looked for it would not get picked up.

>

> He did confirm that continual low methionine needed treatment (this is why

> Breakspear have suggested methyl B12 injections). I asked if he would do

> bloods to check and he agreed but only when the Kids are having venous

> sample taken for something else.

>

> I plan to write to him asking for these tests to be done straight away as

> otherwise we will have corrected it AGAIN taking any resposibility from NHS.

>

> For Charlie (asd) I am quite happy to go this journey without NHS input

> but for my daughter who has blood disorder I can't. She is under so many

> consultants I have no choice but to tell them what I am doing. The YASKO

> testing has uncovered how to help her blood disorder by bypassing her gentic

> mutations and I'm determined to make them treat her (LOL!!!)

>

> I have also eventually managed to get some BH4 - currently in freezer,

> waiting until after Christmas to be brave enough to try (understand can cause

> huge detox initially)!.

>

> Have appt with genetics just after Christmas to investigate link with

> Charlie (asd) and , (blood disorder no asd but lots of asd traits). In

our

> case they are definitely connected and both a result of biochemical

> inbalances/errors.

>

> BW

>

> Alison R

>

[Guest guest]

Alison,

Diatomaceous earth[DE] is used in animal industry for ammonia control-spread out

in the animal stalls etc as well as for bug control. We have used food grade DE

to try and rid parasites and clean up gut but I never thought of it for ammonia

control until your discussion of the BH4 issue. We've not done the genetic

testing but we deal w hyperammonia periodically[hyperventilation is the cue

here] and it seems as if the CBS upregulaion applies as well as some of the

other Yasko stuff. Plasma methionine is usually in the red low. My daughter also

has lots of trouble w tyrosine-usually a seizure provoker, whilst the doc

encourages it for hypothyroid. Been trying to get a handle on this and the light

finally went on with your post. Anyway, I was just wondering if anyone has used

the DE for ammonia and what results. Was thinking that if the DE mopped enough

of the gut ammonia that BH4 would be available systemically in other critical

parts of the body to do its job-very unscientific, I know.

> > >

> > > Well done for keeping on keeping on Alison,you are doing great job

> > >

> > > Mx

> > >

> > >

> > > In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> > > rowbotham.alison@ writes:

> > >

> > >

> > >

> > >

> > > Thought it would be useful to update on our recent metabolic appt. Hope

> > > you're reading this Nevin. (sorry this is long)

> > >

> > > Saw NHS metabolic consultant and presented YASKO genetic results along

> > > with clinical tests done at Breakspear (methylation panel) to show

> > suggested

> > > genetic predisposition and actual clinical situation.

> > >

> > > Concentrated on CBS upregualtion and probable low BH4(as these are key

> > to

> > > my 2 kids).

> > >

> > > Dr (although very nice) was not aware of a role of BH4 in elimination of

> > > ammonia - this worries me as it is well documented and you don't have to

> > > look far to find this info. Apparantly they can test BH4 levels with a

> > finger

> > > prick and send card to switzerland (this would usually be for PKU

> > patients)

> > > I didn't push for this test as we are considering doing it at

> > Breakspear.

> > > If we do test we also need to test for BH2 conversion to BH4 not just

> > > overall BH4 levels. We have also been working hard to increase BH4

> > naturally for

> > > last 6 months and I thought if they did test and result is not too low

> > it w

> > > ould discredit all I was presenting.

> > >

> > > He kept comparing to PKU patients who are low in BH4 and said they did

> > not

> > > have urea cycle problems. I could not drum in that this was probably

> > > because they don't have the other problems causing the big increase in

> > ammonia.

> > >

> > > He said that urine ammonia levels were not accurate and they would only

> > > look at blood - again I could not get it through to him that we also

> > need to

> > > look at what the body is eliminating. Even if blood levels are not

> > > elevated, if ammonia is continually produced at higher levels what

> > effect does this

> > > have on the body i.e low levels of BH4 and kidney stress. The symptoms

> > my

> > > kids suffer are not high ammonia - they are low BH$ because of having to

> > > remove too much ammonia!!!

> > >

> > > In relation to CBS upregulation, he read the info and said if this was

> > the

> > > case we would see low methionine on amino acid test. At this point I

> > > handed urine amino acid tests for both kids showing very low methionine

> > - he

> > > started to listen but then said again they would only consider blood

> > results.

> > > He actually did blood AA's on my kids last year and methionine was only

> > 14.

> > > This actually confirmed the problem with NHS testing - their range for

> > > methionine is from 0 so if someone has continually low methionine unless

> > this

> > > is been looked for it would not get picked up.

> > >

> > > He did confirm that continual low methionine needed treatment (this is

> > why

> > > Breakspear have suggested methyl B12 injections). I asked if he would do

> > > bloods to check and he agreed but only when the Kids are having venous

> > > sample taken for something else.

> > >

> > > I plan to write to him asking for these tests to be done straight away

> > as

> > > otherwise we will have corrected it AGAIN taking any resposibility from

> > NHS.

> > >

> > > For Charlie (asd) I am quite happy to go this journey without NHS input

> > > but for my daughter who has blood disorder I can't. She is under so

> > many

> > > consultants I have no choice but to tell them what I am doing. The YASKO

> > > testing has uncovered how to help her blood disorder by bypassing her

> > gentic

> > > mutations and I'm determined to make them treat her (LOL!!!)

> > >

> > > I have also eventually managed to get some BH4 - currently in freezer,

> > > waiting until after Christmas to be brave enough to try (understand can

> > cause

> > > huge detox initially)!.

> > >

> > > Have appt with genetics just after Christmas to investigate link with

> > > Charlie (asd) and , (blood disorder no asd but lots of asd traits).

> > In our

> > > case they are definitely connected and both a result of biochemical

> > > inbalances/errors.

> > >

> > > BW

> > >

> > > Alison R

> > >

> >

> >

> >

>

[Guest guest]

Alison,

Diatomaceous earth[DE] is used in animal industry for ammonia control-spread out

in the animal stalls etc as well as for bug control. We have used food grade DE

to try and rid parasites and clean up gut but I never thought of it for ammonia

control until your discussion of the BH4 issue. We've not done the genetic

testing but we deal w hyperammonia periodically[hyperventilation is the cue

here] and it seems as if the CBS upregulaion applies as well as some of the

other Yasko stuff. Plasma methionine is usually in the red low. My daughter also

has lots of trouble w tyrosine-usually a seizure provoker, whilst the doc

encourages it for hypothyroid. Been trying to get a handle on this and the light

finally went on with your post. Anyway, I was just wondering if anyone has used

the DE for ammonia and what results. Was thinking that if the DE mopped enough

of the gut ammonia that BH4 would be available systemically in other critical

parts of the body to do its job-very unscientific, I know.

> > >

> > > Well done for keeping on keeping on Alison,you are doing great job

> > >

> > > Mx

> > >

> > >

> > > In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> > > rowbotham.alison@ writes:

> > >

> > >

> > >

> > >

> > > Thought it would be useful to update on our recent metabolic appt. Hope

> > > you're reading this Nevin. (sorry this is long)

> > >

> > > Saw NHS metabolic consultant and presented YASKO genetic results along

> > > with clinical tests done at Breakspear (methylation panel) to show

> > suggested

> > > genetic predisposition and actual clinical situation.

> > >

> > > Concentrated on CBS upregualtion and probable low BH4(as these are key

> > to

> > > my 2 kids).

> > >

> > > Dr (although very nice) was not aware of a role of BH4 in elimination of

> > > ammonia - this worries me as it is well documented and you don't have to

> > > look far to find this info. Apparantly they can test BH4 levels with a

> > finger

> > > prick and send card to switzerland (this would usually be for PKU

> > patients)

> > > I didn't push for this test as we are considering doing it at

> > Breakspear.

> > > If we do test we also need to test for BH2 conversion to BH4 not just

> > > overall BH4 levels. We have also been working hard to increase BH4

> > naturally for

> > > last 6 months and I thought if they did test and result is not too low

> > it w

> > > ould discredit all I was presenting.

> > >

> > > He kept comparing to PKU patients who are low in BH4 and said they did

> > not

> > > have urea cycle problems. I could not drum in that this was probably

> > > because they don't have the other problems causing the big increase in

> > ammonia.

> > >

> > > He said that urine ammonia levels were not accurate and they would only

> > > look at blood - again I could not get it through to him that we also

> > need to

> > > look at what the body is eliminating. Even if blood levels are not

> > > elevated, if ammonia is continually produced at higher levels what

> > effect does this

> > > have on the body i.e low levels of BH4 and kidney stress. The symptoms

> > my

> > > kids suffer are not high ammonia - they are low BH$ because of having to

> > > remove too much ammonia!!!

> > >

> > > In relation to CBS upregulation, he read the info and said if this was

> > the

> > > case we would see low methionine on amino acid test. At this point I

> > > handed urine amino acid tests for both kids showing very low methionine

> > - he

> > > started to listen but then said again they would only consider blood

> > results.

> > > He actually did blood AA's on my kids last year and methionine was only

> > 14.

> > > This actually confirmed the problem with NHS testing - their range for

> > > methionine is from 0 so if someone has continually low methionine unless

> > this

> > > is been looked for it would not get picked up.

> > >

> > > He did confirm that continual low methionine needed treatment (this is

> > why

> > > Breakspear have suggested methyl B12 injections). I asked if he would do

> > > bloods to check and he agreed but only when the Kids are having venous

> > > sample taken for something else.

> > >

> > > I plan to write to him asking for these tests to be done straight away

> > as

> > > otherwise we will have corrected it AGAIN taking any resposibility from

> > NHS.

> > >

> > > For Charlie (asd) I am quite happy to go this journey without NHS input

> > > but for my daughter who has blood disorder I can't. She is under so

> > many

> > > consultants I have no choice but to tell them what I am doing. The YASKO

> > > testing has uncovered how to help her blood disorder by bypassing her

> > gentic

> > > mutations and I'm determined to make them treat her (LOL!!!)

> > >

> > > I have also eventually managed to get some BH4 - currently in freezer,

> > > waiting until after Christmas to be brave enough to try (understand can

> > cause

> > > huge detox initially)!.

> > >

> > > Have appt with genetics just after Christmas to investigate link with

> > > Charlie (asd) and , (blood disorder no asd but lots of asd traits).

> > In our

> > > case they are definitely connected and both a result of biochemical

> > > inbalances/errors.

> > >

> > > BW

> > >

> > > Alison R

> > >

> >

> >

> >

>

[Guest guest]

Alison,

Diatomaceous earth[DE] is used in animal industry for ammonia control-spread out

in the animal stalls etc as well as for bug control. We have used food grade DE

to try and rid parasites and clean up gut but I never thought of it for ammonia

control until your discussion of the BH4 issue. We've not done the genetic

testing but we deal w hyperammonia periodically[hyperventilation is the cue

here] and it seems as if the CBS upregulaion applies as well as some of the

other Yasko stuff. Plasma methionine is usually in the red low. My daughter also

has lots of trouble w tyrosine-usually a seizure provoker, whilst the doc

encourages it for hypothyroid. Been trying to get a handle on this and the light

finally went on with your post. Anyway, I was just wondering if anyone has used

the DE for ammonia and what results. Was thinking that if the DE mopped enough

of the gut ammonia that BH4 would be available systemically in other critical

parts of the body to do its job-very unscientific, I know.

> > >

> > > Well done for keeping on keeping on Alison,you are doing great job

> > >

> > > Mx

> > >

> > >

> > > In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> > > rowbotham.alison@ writes:

> > >

> > >

> > >

> > >

> > > Thought it would be useful to update on our recent metabolic appt. Hope

> > > you're reading this Nevin. (sorry this is long)

> > >

> > > Saw NHS metabolic consultant and presented YASKO genetic results along

> > > with clinical tests done at Breakspear (methylation panel) to show

> > suggested

> > > genetic predisposition and actual clinical situation.

> > >

> > > Concentrated on CBS upregualtion and probable low BH4(as these are key

> > to

> > > my 2 kids).

> > >

> > > Dr (although very nice) was not aware of a role of BH4 in elimination of

> > > ammonia - this worries me as it is well documented and you don't have to

> > > look far to find this info. Apparantly they can test BH4 levels with a

> > finger

> > > prick and send card to switzerland (this would usually be for PKU

> > patients)

> > > I didn't push for this test as we are considering doing it at

> > Breakspear.

> > > If we do test we also need to test for BH2 conversion to BH4 not just

> > > overall BH4 levels. We have also been working hard to increase BH4

> > naturally for

> > > last 6 months and I thought if they did test and result is not too low

> > it w

> > > ould discredit all I was presenting.

> > >

> > > He kept comparing to PKU patients who are low in BH4 and said they did

> > not

> > > have urea cycle problems. I could not drum in that this was probably

> > > because they don't have the other problems causing the big increase in

> > ammonia.

> > >

> > > He said that urine ammonia levels were not accurate and they would only

> > > look at blood - again I could not get it through to him that we also

> > need to

> > > look at what the body is eliminating. Even if blood levels are not

> > > elevated, if ammonia is continually produced at higher levels what

> > effect does this

> > > have on the body i.e low levels of BH4 and kidney stress. The symptoms

> > my

> > > kids suffer are not high ammonia - they are low BH$ because of having to

> > > remove too much ammonia!!!

> > >

> > > In relation to CBS upregulation, he read the info and said if this was

> > the

> > > case we would see low methionine on amino acid test. At this point I

> > > handed urine amino acid tests for both kids showing very low methionine

> > - he

> > > started to listen but then said again they would only consider blood

> > results.

> > > He actually did blood AA's on my kids last year and methionine was only

> > 14.

> > > This actually confirmed the problem with NHS testing - their range for

> > > methionine is from 0 so if someone has continually low methionine unless

> > this

> > > is been looked for it would not get picked up.

> > >

> > > He did confirm that continual low methionine needed treatment (this is

> > why

> > > Breakspear have suggested methyl B12 injections). I asked if he would do

> > > bloods to check and he agreed but only when the Kids are having venous

> > > sample taken for something else.

> > >

> > > I plan to write to him asking for these tests to be done straight away

> > as

> > > otherwise we will have corrected it AGAIN taking any resposibility from

> > NHS.

> > >

> > > For Charlie (asd) I am quite happy to go this journey without NHS input

> > > but for my daughter who has blood disorder I can't. She is under so

> > many

> > > consultants I have no choice but to tell them what I am doing. The YASKO

> > > testing has uncovered how to help her blood disorder by bypassing her

> > gentic

> > > mutations and I'm determined to make them treat her (LOL!!!)

> > >

> > > I have also eventually managed to get some BH4 - currently in freezer,

> > > waiting until after Christmas to be brave enough to try (understand can

> > cause

> > > huge detox initially)!.

> > >

> > > Have appt with genetics just after Christmas to investigate link with

> > > Charlie (asd) and , (blood disorder no asd but lots of asd traits).

> > In our

> > > case they are definitely connected and both a result of biochemical

> > > inbalances/errors.

> > >

> > > BW

> > >

> > > Alison R

> > >

> >

> >

> >

>

[Guest guest]

Hi Alison,

It's good to see that you are looking at this complex issue together with

DrG.from Breakspear Hospital.We will see him in January.I copied your message

and I am going to ask him the test you mentioned here.

How do you naturally increase BH4, what are you giving to Charlie?

Roni's test results all came from the GOSH.They found nothing significant

related to his seizures except one enzyme which I mentioned it here before.

His plasma ammonia is low, 14 less than the ref value of 40

His methionine....23 (Ref 10-60) perhaps it is low....

In his spinal fluid.. there was no measle virus and no herpes . They used the

word 'herpes simplex , it was negative..I wonder is it the same herpes virus

which Dr Goldberg is treating?

I will hear DrYasko's recommendation on Monday.Last night he had a silly, funny

laughter again, I was expecting seizure any minute but it didn't happen..perhaps

regular use of Ammonia RNA helped??I don't know.Perhaps it was the moon affect

for that silly, manic laughter for an hour??

Please keep inform us as our children have both similarities in genomic profile,

your observation and investigation is helping me.

I don't know what DrG is going to recommend us?

All the best

Nevin

>

> Thought it would be useful to update on our recent metabolic appt. Hope

you're reading this Nevin. (sorry this is long)

>

> Saw NHS metabolic consultant and presented YASKO genetic results along with

clinical tests done at Breakspear (methylation panel) to show suggested genetic

predisposition and actual clinical situation.

>

> Concentrated on CBS upregualtion and probable low BH4(as these are key to my 2

kids).

>

> Dr (although very nice) was not aware of a role of BH4 in elimination of

ammonia - this worries me as it is well documented and you don't have to look

far to find this info. Apparantly they can test BH4 levels with a finger prick

and send card to switzerland (this would usually be for PKU patients) I didn't

push for this test as we are considering doing it at Breakspear. If we do test

we also need to test for BH2 conversion to BH4 not just overall BH4 levels. We

have also been working hard to increase BH4 naturally for last 6 months and I

thought if they did test and result is not too low it would discredit all I was

presenting.

>

> He kept comparing to PKU patients who are low in BH4 and said they did not

have urea cycle problems. I could not drum in that this was probably because

they don't have the other problems causing the big increase in ammonia.

>

> He said that urine ammonia levels were not accurate and they would only look

at blood - again I could not get it through to him that we also need to look at

what the body is eliminating. Even if blood levels are not elevated, if ammonia

is continually produced at higher levels what effect does this have on the body

i.e low levels of BH4 and kidney stress. The symptoms my kids suffer are not

high ammonia - they are low BH$ because of having to remove too much ammonia!!!

>

> In relation to CBS upregulation, he read the info and said if this was the

case we would see low methionine on amino acid test. At this point I handed

urine amino acid tests for both kids showing very low methionine - he started to

listen but then said again they would only consider blood results. He actually

did blood AA's on my kids last year and methionine was only 14. This actually

confirmed the problem with NHS testing - their range for methionine is from 0 so

if someone has continually low methionine unless this is been looked for it

would not get picked up.

>

> He did confirm that continual low methionine needed treatment (this is why

Breakspear have suggested methyl B12 injections). I asked if he would do bloods

to check and he agreed but only when the Kids are having venous sample taken for

something else.

>

> I plan to write to him asking for these tests to be done straight away as

otherwise we will have corrected it AGAIN taking any resposibility from NHS.

>

> For Charlie (asd) I am quite happy to go this journey without NHS input but

for my daughter who has blood disorder I can't. She is under so many

consultants I have no choice but to tell them what I am doing. The YASKO

testing has uncovered how to help her blood disorder by bypassing her gentic

mutations and I'm determined to make them treat her (LOL!!!)

>

> I have also eventually managed to get some BH4 - currently in freezer, waiting

until after Christmas to be brave enough to try (understand can cause huge detox

initially)!.

>

> Have appt with genetics just after Christmas to investigate link with Charlie

(asd) and , (blood disorder no asd but lots of asd traits). In our case

they are definitely connected and both a result of biochemical

inbalances/errors.

>

> BW

>

> Alison R

>

[Guest guest]

Hi Alison,

It's good to see that you are looking at this complex issue together with

DrG.from Breakspear Hospital.We will see him in January.I copied your message

and I am going to ask him the test you mentioned here.

How do you naturally increase BH4, what are you giving to Charlie?

Roni's test results all came from the GOSH.They found nothing significant

related to his seizures except one enzyme which I mentioned it here before.

His plasma ammonia is low, 14 less than the ref value of 40

His methionine....23 (Ref 10-60) perhaps it is low....

In his spinal fluid.. there was no measle virus and no herpes . They used the

word 'herpes simplex , it was negative..I wonder is it the same herpes virus

which Dr Goldberg is treating?

I will hear DrYasko's recommendation on Monday.Last night he had a silly, funny

laughter again, I was expecting seizure any minute but it didn't happen..perhaps

regular use of Ammonia RNA helped??I don't know.Perhaps it was the moon affect

for that silly, manic laughter for an hour??

Please keep inform us as our children have both similarities in genomic profile,

your observation and investigation is helping me.

I don't know what DrG is going to recommend us?

All the best

Nevin

>

> Thought it would be useful to update on our recent metabolic appt. Hope

you're reading this Nevin. (sorry this is long)

>

> Saw NHS metabolic consultant and presented YASKO genetic results along with

clinical tests done at Breakspear (methylation panel) to show suggested genetic

predisposition and actual clinical situation.

>

> Concentrated on CBS upregualtion and probable low BH4(as these are key to my 2

kids).

>

> Dr (although very nice) was not aware of a role of BH4 in elimination of

ammonia - this worries me as it is well documented and you don't have to look

far to find this info. Apparantly they can test BH4 levels with a finger prick

and send card to switzerland (this would usually be for PKU patients) I didn't

push for this test as we are considering doing it at Breakspear. If we do test

we also need to test for BH2 conversion to BH4 not just overall BH4 levels. We

have also been working hard to increase BH4 naturally for last 6 months and I

thought if they did test and result is not too low it would discredit all I was

presenting.

>

> He kept comparing to PKU patients who are low in BH4 and said they did not

have urea cycle problems. I could not drum in that this was probably because

they don't have the other problems causing the big increase in ammonia.

>

> He said that urine ammonia levels were not accurate and they would only look

at blood - again I could not get it through to him that we also need to look at

what the body is eliminating. Even if blood levels are not elevated, if ammonia

is continually produced at higher levels what effect does this have on the body

i.e low levels of BH4 and kidney stress. The symptoms my kids suffer are not

high ammonia - they are low BH$ because of having to remove too much ammonia!!!

>

> In relation to CBS upregulation, he read the info and said if this was the

case we would see low methionine on amino acid test. At this point I handed

urine amino acid tests for both kids showing very low methionine - he started to

listen but then said again they would only consider blood results. He actually

did blood AA's on my kids last year and methionine was only 14. This actually

confirmed the problem with NHS testing - their range for methionine is from 0 so

if someone has continually low methionine unless this is been looked for it

would not get picked up.

>

> He did confirm that continual low methionine needed treatment (this is why

Breakspear have suggested methyl B12 injections). I asked if he would do bloods

to check and he agreed but only when the Kids are having venous sample taken for

something else.

>

> I plan to write to him asking for these tests to be done straight away as

otherwise we will have corrected it AGAIN taking any resposibility from NHS.

>

> For Charlie (asd) I am quite happy to go this journey without NHS input but

for my daughter who has blood disorder I can't. She is under so many

consultants I have no choice but to tell them what I am doing. The YASKO

testing has uncovered how to help her blood disorder by bypassing her gentic

mutations and I'm determined to make them treat her (LOL!!!)

>

> I have also eventually managed to get some BH4 - currently in freezer, waiting

until after Christmas to be brave enough to try (understand can cause huge detox

initially)!.

>

> Have appt with genetics just after Christmas to investigate link with Charlie

(asd) and , (blood disorder no asd but lots of asd traits). In our case

they are definitely connected and both a result of biochemical

inbalances/errors.

>

> BW

>

> Alison R

>

[Guest guest]

Alison,

We have never used arginine due to what seems like a heavy viral load and have

heavily dosed lysine. Here, testing has never shown the ammonia but the symptoms

say yes and she has responded well to Yasko's suggestion of Yucca w protein. For

sure the neurotrans balance is off here. Do you know what the shelf life of BH4

is? I've some sitting in the freezer that I've been too chicken to use. And can

it be given intermittently? Part of my dilemma is parttime custody. Thanks,

> > > > >

> > > > > Well done for keeping on keeping on Alison,you are doing great job

> > > > >

> > > > > Mx

> > > > >

> > > > >

> > > > > In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> > > > > rowbotham.alison@ writes:

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Thought it would be useful to update on our recent metabolic appt.

> > Hope

> > > > > you're reading this Nevin. (sorry this is long)

> > > > >

> > > > > Saw NHS metabolic consultant and presented YASKO genetic results

> > along

> > > > > with clinical tests done at Breakspear (methylation panel) to show

> > > > suggested

> > > > > genetic predisposition and actual clinical situation.

> > > > >

> > > > > Concentrated on CBS upregualtion and probable low BH4(as these are

> > key

> > > > to

> > > > > my 2 kids).

> > > > >

> > > > > Dr (although very nice) was not aware of a role of BH4 in

> > elimination of

> > > > > ammonia - this worries me as it is well documented and you don't

> > have to

> > > > > look far to find this info. Apparantly they can test BH4 levels with

> > a

> > > > finger

> > > > > prick and send card to switzerland (this would usually be for PKU

> > > > patients)

> > > > > I didn't push for this test as we are considering doing it at

> > > > Breakspear.

> > > > > If we do test we also need to test for BH2 conversion to BH4 not just

> > > > > overall BH4 levels. We have also been working hard to increase BH4

> > > > naturally for

> > > > > last 6 months and I thought if they did test and result is not too

> > low

> > > > it w

> > > > > ould discredit all I was presenting.

> > > > >

> > > > > He kept comparing to PKU patients who are low in BH4 and said they

> > did

> > > > not

> > > > > have urea cycle problems. I could not drum in that this was probably

> > > > > because they don't have the other problems causing the big increase

> > in

> > > > ammonia.

> > > > >

> > > > > He said that urine ammonia levels were not accurate and they would

> > only

> > > > > look at blood - again I could not get it through to him that we also

> > > > need to

> > > > > look at what the body is eliminating. Even if blood levels are not

> > > > > elevated, if ammonia is continually produced at higher levels what

> > > > effect does this

> > > > > have on the body i.e low levels of BH4 and kidney stress. The

> > symptoms

> > > > my

> > > > > kids suffer are not high ammonia - they are low BH$ because of

> > having to

> > > > > remove too much ammonia!!!

> > > > >

> > > > > In relation to CBS upregulation, he read the info and said if this

> > was

> > > > the

> > > > > case we would see low methionine on amino acid test. At this point I

> > > > > handed urine amino acid tests for both kids showing very low

> > methionine

> > > > - he

> > > > > started to listen but then said again they would only consider blood

> > > > results.

> > > > > He actually did blood AA's on my kids last year and methionine was

> > only

> > > > 14.

> > > > > This actually confirmed the problem with NHS testing - their range

> > for

> > > > > methionine is from 0 so if someone has continually low methionine

> > unless

> > > > this

> > > > > is been looked for it would not get picked up.

> > > > >

> > > > > He did confirm that continual low methionine needed treatment (this

> > is

> > > > why

> > > > > Breakspear have suggested methyl B12 injections). I asked if he

> > would do

> > > > > bloods to check and he agreed but only when the Kids are having

> > venous

> > > > > sample taken for something else.

> > > > >

> > > > > I plan to write to him asking for these tests to be done straight

> > away

> > > > as

> > > > > otherwise we will have corrected it AGAIN taking any resposibility

> > from

> > > > NHS.

> > > > >

> > > > > For Charlie (asd) I am quite happy to go this journey without NHS

> > input

> > > > > but for my daughter who has blood disorder I can't. She is

> > under so

> > > > many

> > > > > consultants I have no choice but to tell them what I am doing. The

> > YASKO

> > > > > testing has uncovered how to help her blood disorder by bypassing her

> > > > gentic

> > > > > mutations and I'm determined to make them treat her (LOL!!!)

> > > > >

> > > > > I have also eventually managed to get some BH4 - currently in

> > freezer,

> > > > > waiting until after Christmas to be brave enough to try (understand

> > can

> > > > cause

> > > > > huge detox initially)!.

> > > > >

> > > > > Have appt with genetics just after Christmas to investigate link with

> > > > > Charlie (asd) and , (blood disorder no asd but lots of asd

> > traits).

> > > > In our

> > > > > case they are definitely connected and both a result of biochemical

> > > > > inbalances/errors.

> > > > >

> > > > > BW

> > > > >

> > > > > Alison R

> > > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Alison,

We have never used arginine due to what seems like a heavy viral load and have

heavily dosed lysine. Here, testing has never shown the ammonia but the symptoms

say yes and she has responded well to Yasko's suggestion of Yucca w protein. For

sure the neurotrans balance is off here. Do you know what the shelf life of BH4

is? I've some sitting in the freezer that I've been too chicken to use. And can

it be given intermittently? Part of my dilemma is parttime custody. Thanks,

> > > > >

> > > > > Well done for keeping on keeping on Alison,you are doing great job

> > > > >

> > > > > Mx

> > > > >

> > > > >

> > > > > In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> > > > > rowbotham.alison@ writes:

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Thought it would be useful to update on our recent metabolic appt.

> > Hope

> > > > > you're reading this Nevin. (sorry this is long)

> > > > >

> > > > > Saw NHS metabolic consultant and presented YASKO genetic results

> > along

> > > > > with clinical tests done at Breakspear (methylation panel) to show

> > > > suggested

> > > > > genetic predisposition and actual clinical situation.

> > > > >

> > > > > Concentrated on CBS upregualtion and probable low BH4(as these are

> > key

> > > > to

> > > > > my 2 kids).

> > > > >

> > > > > Dr (although very nice) was not aware of a role of BH4 in

> > elimination of

> > > > > ammonia - this worries me as it is well documented and you don't

> > have to

> > > > > look far to find this info. Apparantly they can test BH4 levels with

> > a

> > > > finger

> > > > > prick and send card to switzerland (this would usually be for PKU

> > > > patients)

> > > > > I didn't push for this test as we are considering doing it at

> > > > Breakspear.

> > > > > If we do test we also need to test for BH2 conversion to BH4 not just

> > > > > overall BH4 levels. We have also been working hard to increase BH4

> > > > naturally for

> > > > > last 6 months and I thought if they did test and result is not too

> > low

> > > > it w

> > > > > ould discredit all I was presenting.

> > > > >

> > > > > He kept comparing to PKU patients who are low in BH4 and said they

> > did

> > > > not

> > > > > have urea cycle problems. I could not drum in that this was probably

> > > > > because they don't have the other problems causing the big increase

> > in

> > > > ammonia.

> > > > >

> > > > > He said that urine ammonia levels were not accurate and they would

> > only

> > > > > look at blood - again I could not get it through to him that we also

> > > > need to

> > > > > look at what the body is eliminating. Even if blood levels are not

> > > > > elevated, if ammonia is continually produced at higher levels what

> > > > effect does this

> > > > > have on the body i.e low levels of BH4 and kidney stress. The

> > symptoms

> > > > my

> > > > > kids suffer are not high ammonia - they are low BH$ because of

> > having to

> > > > > remove too much ammonia!!!

> > > > >

> > > > > In relation to CBS upregulation, he read the info and said if this

> > was

> > > > the

> > > > > case we would see low methionine on amino acid test. At this point I

> > > > > handed urine amino acid tests for both kids showing very low

> > methionine

> > > > - he

> > > > > started to listen but then said again they would only consider blood

> > > > results.

> > > > > He actually did blood AA's on my kids last year and methionine was

> > only

> > > > 14.

> > > > > This actually confirmed the problem with NHS testing - their range

> > for

> > > > > methionine is from 0 so if someone has continually low methionine

> > unless

> > > > this

> > > > > is been looked for it would not get picked up.

> > > > >

> > > > > He did confirm that continual low methionine needed treatment (this

> > is

> > > > why

> > > > > Breakspear have suggested methyl B12 injections). I asked if he

> > would do

> > > > > bloods to check and he agreed but only when the Kids are having

> > venous

> > > > > sample taken for something else.

> > > > >

> > > > > I plan to write to him asking for these tests to be done straight

> > away

> > > > as

> > > > > otherwise we will have corrected it AGAIN taking any resposibility

> > from

> > > > NHS.

> > > > >

> > > > > For Charlie (asd) I am quite happy to go this journey without NHS

> > input

> > > > > but for my daughter who has blood disorder I can't. She is

> > under so

> > > > many

> > > > > consultants I have no choice but to tell them what I am doing. The

> > YASKO

> > > > > testing has uncovered how to help her blood disorder by bypassing her

> > > > gentic

> > > > > mutations and I'm determined to make them treat her (LOL!!!)

> > > > >

> > > > > I have also eventually managed to get some BH4 - currently in

> > freezer,

> > > > > waiting until after Christmas to be brave enough to try (understand

> > can

> > > > cause

> > > > > huge detox initially)!.

> > > > >

> > > > > Have appt with genetics just after Christmas to investigate link with

> > > > > Charlie (asd) and , (blood disorder no asd but lots of asd

> > traits).

> > > > In our

> > > > > case they are definitely connected and both a result of biochemical

> > > > > inbalances/errors.

> > > > >

> > > > > BW

> > > > >

> > > > > Alison R

> > > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Alison,

We have never used arginine due to what seems like a heavy viral load and have

heavily dosed lysine. Here, testing has never shown the ammonia but the symptoms

say yes and she has responded well to Yasko's suggestion of Yucca w protein. For

sure the neurotrans balance is off here. Do you know what the shelf life of BH4

is? I've some sitting in the freezer that I've been too chicken to use. And can

it be given intermittently? Part of my dilemma is parttime custody. Thanks,

> > > > >

> > > > > Well done for keeping on keeping on Alison,you are doing great job

> > > > >

> > > > > Mx

> > > > >

> > > > >

> > > > > In a message dated 10/12/2011 08:48:22 GMT Standard Time,

> > > > > rowbotham.alison@ writes:

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Thought it would be useful to update on our recent metabolic appt.

> > Hope

> > > > > you're reading this Nevin. (sorry this is long)

> > > > >

> > > > > Saw NHS metabolic consultant and presented YASKO genetic results

> > along

> > > > > with clinical tests done at Breakspear (methylation panel) to show

> > > > suggested

> > > > > genetic predisposition and actual clinical situation.

> > > > >

> > > > > Concentrated on CBS upregualtion and probable low BH4(as these are

> > key

> > > > to

> > > > > my 2 kids).

> > > > >

> > > > > Dr (although very nice) was not aware of a role of BH4 in

> > elimination of

> > > > > ammonia - this worries me as it is well documented and you don't

> > have to

> > > > > look far to find this info. Apparantly they can test BH4 levels with

> > a

> > > > finger

> > > > > prick and send card to switzerland (this would usually be for PKU

> > > > patients)

> > > > > I didn't push for this test as we are considering doing it at

> > > > Breakspear.

> > > > > If we do test we also need to test for BH2 conversion to BH4 not just

> > > > > overall BH4 levels. We have also been working hard to increase BH4

> > > > naturally for

> > > > > last 6 months and I thought if they did test and result is not too

> > low

> > > > it w

> > > > > ould discredit all I was presenting.

> > > > >

> > > > > He kept comparing to PKU patients who are low in BH4 and said they

> > did

> > > > not

> > > > > have urea cycle problems. I could not drum in that this was probably

> > > > > because they don't have the other problems causing the big increase

> > in

> > > > ammonia.

> > > > >

> > > > > He said that urine ammonia levels were not accurate and they would

> > only

> > > > > look at blood - again I could not get it through to him that we also

> > > > need to

> > > > > look at what the body is eliminating. Even if blood levels are not

> > > > > elevated, if ammonia is continually produced at higher levels what

> > > > effect does this

> > > > > have on the body i.e low levels of BH4 and kidney stress. The

> > symptoms

> > > > my

> > > > > kids suffer are not high ammonia - they are low BH$ because of

> > having to

> > > > > remove too much ammonia!!!

> > > > >

> > > > > In relation to CBS upregulation, he read the info and said if this

> > was

> > > > the

> > > > > case we would see low methionine on amino acid test. At this point I

> > > > > handed urine amino acid tests for both kids showing very low

> > methionine

> > > > - he

> > > > > started to listen but then said again they would only consider blood

> > > > results.

> > > > > He actually did blood AA's on my kids last year and methionine was

> > only

> > > > 14.

> > > > > This actually confirmed the problem with NHS testing - their range

> > for

> > > > > methionine is from 0 so if someone has continually low methionine

> > unless

> > > > this

> > > > > is been looked for it would not get picked up.

> > > > >

> > > > > He did confirm that continual low methionine needed treatment (this

> > is

> > > > why

> > > > > Breakspear have suggested methyl B12 injections). I asked if he

> > would do

> > > > > bloods to check and he agreed but only when the Kids are having

> > venous

> > > > > sample taken for something else.

> > > > >

> > > > > I plan to write to him asking for these tests to be done straight

> > away

> > > > as

> > > > > otherwise we will have corrected it AGAIN taking any resposibility

> > from

> > > > NHS.

> > > > >

> > > > > For Charlie (asd) I am quite happy to go this journey without NHS

> > input

> > > > > but for my daughter who has blood disorder I can't. She is

> > under so

> > > > many

> > > > > consultants I have no choice but to tell them what I am doing. The

> > YASKO

> > > > > testing has uncovered how to help her blood disorder by bypassing her

> > > > gentic

> > > > > mutations and I'm determined to make them treat her (LOL!!!)

> > > > >

> > > > > I have also eventually managed to get some BH4 - currently in

> > freezer,

> > > > > waiting until after Christmas to be brave enough to try (understand

> > can

> > > > cause

> > > > > huge detox initially)!.

> > > > >

> > > > > Have appt with genetics just after Christmas to investigate link with

> > > > > Charlie (asd) and , (blood disorder no asd but lots of asd

> > traits).

> > > > In our

> > > > > case they are definitely connected and both a result of biochemical

> > > > > inbalances/errors.

> > > > >

> > > > > BW

> > > > >

> > > > > Alison R

> > > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Hello Alison,

WE completed several tests.DrYasko made her comments on the test results and

also wrote a one page comments and added her view for the supplement lists.

Anyway what she says;

CSA....my son's lysozme is just above the ref range, she is recommending Bowel

RNA,Negeral inflammation RNA and Cytokine RNA for this. Candida is+2, so she

recom.Mycology RNA+candisol+nystatin or IMF 7

In bacterial culture there are some strep....she recom.STRX+IMF5+naturomycin

lithium is low,she recom.lithium then B12

She hasn't made much comments about the metals which were low on the test,she

says minimal comments until the seizures under control

My son's metabolic profile...Riboflavin and ultimate B she suggests,because

looks they are in high need

Amino acids in urine...kidney RNA.SHMT spray,leaky gut RNA,once they ar ein

place adding PS,Amino Assists spray

Says..wait to stop any added taurine until it climbs on its own with methylation

support..,all the values here are within the ref.range..include ammonia...but

creatinine is high..,that's why she recom.kindney supports and also rhodiola

root...

In neurotransmitters...(urine) epinephrine and norepinephrine were low..she

says when ready start PS

Serotonin is low...recom.seromood....ofcourse checking with the dr to see if it

is ok with the seizure medication.

Special digestive enzymes which are higher inpancreatin is recom.

The test from GOSH Amino acids in plasma was High glycine....she

recom.methlmate A+B+B12 and again neruotransmitters in CSF dhydrobiopterin was

high..she says..NADH or ALA98C caps.

In her notes;she suggests;start with lithium then B12,soy free PS,then SHMT

spray,then methymateA+B

creatinine needs attention, to be loweredsome gut bugs needs to be dealth

with.She is not sure H.pylori plays a role here/.

I ordered supplements which she recommended except probiotics,they don't send

outside USA.However Breakspears " profolora " from BioBotanical has one or two

elements similar which she recommends, s it will be OK I think.

So..I would like to follow her recommendation, I sent a message to DrGoyal ..We

will see him in January but I don't want to wait as my son's seizures are still

in present.I would like to give him lithium but I am a bit timid.Revita pop i

think is OK for B12.

As a summary I am happy for all these interpretation, if I can get DrG.support

,it will be nice.I have difficulty for following her forum though.

As you know my son had so many tests to see if we can catch any clue for his

seizures, so far they haven't found something significant.Yasko thinks (and also

send me an article )..lack of B12 can cause seizures..MY suspicion is hormonal

now, testesterone level.I will ask dr G to check this in tests..

Another reason ofocurse is the metals perhaps hidden.But DrYasko made a comment

on his toxic metal test..that he is excreting despite the low B12...Suggesting

more frequentFMT alternate HMT+UTM

She wrote a word " ...as he is excreting well without methylation,so there may be

a jump in excration with methylation.... This is complicated,I need more

understanding how could it be possible if one pathway doesn't work properly, how

can he eliminate the metals if he has, ofcourse he has..If anyone would like to

make a comment, please do.

This is the situation now.

Nevin

> > >

> > > Thought it would be useful to update on our recent metabolic appt. Hope

> > you're reading this Nevin. (sorry this is long)

> > >

> > > Saw NHS metabolic consultant and presented YASKO genetic results along

> > with clinical tests done at Breakspear (methylation panel) to show

> > suggested genetic predisposition and actual clinical situation.

> > >

> > > Concentrated on CBS upregualtion and probable low BH4(as these are key

> > to my 2 kids).

> > >

> > > Dr (although very nice) was not aware of a role of BH4 in elimination of

> > ammonia - this worries me as it is well documented and you don't have to

> > look far to find this info. Apparantly they can test BH4 levels with a

> > finger prick and send card to switzerland (this would usually be for PKU

> > patients) I didn't push for this test as we are considering doing it at

> > Breakspear. If we do test we also need to test for BH2 conversion to BH4

> > not just overall BH4 levels. We have also been working hard to increase BH4

> > naturally for last 6 months and I thought if they did test and result is

> > not too low it would discredit all I was presenting.

> > >

> > > He kept comparing to PKU patients who are low in BH4 and said they did

> > not have urea cycle problems. I could not drum in that this was probably

> > because they don't have the other problems causing the big increase in

> > ammonia.

> > >

> > > He said that urine ammonia levels were not accurate and they would only

> > look at blood - again I could not get it through to him that we also need

> > to look at what the body is eliminating. Even if blood levels are not

> > elevated, if ammonia is continually produced at higher levels what effect

> > does this have on the body i.e low levels of BH4 and kidney stress. The

> > symptoms my kids suffer are not high ammonia - they are low BH$ because of

> > having to remove too much ammonia!!!

> > >

> > > In relation to CBS upregulation, he read the info and said if this was

> > the case we would see low methionine on amino acid test. At this point I

> > handed urine amino acid tests for both kids showing very low methionine -

> > he started to listen but then said again they would only consider blood

> > results. He actually did blood AA's on my kids last year and methionine was

> > only 14. This actually confirmed the problem with NHS testing - their range

> > for methionine is from 0 so if someone has continually low methionine

> > unless this is been looked for it would not get picked up.

> > >

> > > He did confirm that continual low methionine needed treatment (this is

> > why Breakspear have suggested methyl B12 injections). I asked if he would

> > do bloods to check and he agreed but only when the Kids are having venous

> > sample taken for something else.

> > >

> > > I plan to write to him asking for these tests to be done straight away

> > as otherwise we will have corrected it AGAIN taking any resposibility from

> > NHS.

> > >

> > > For Charlie (asd) I am quite happy to go this journey without NHS input

> > but for my daughter who has blood disorder I can't. She is under so

> > many consultants I have no choice but to tell them what I am doing. The

> > YASKO testing has uncovered how to help her blood disorder by bypassing her

> > gentic mutations and I'm determined to make them treat her (LOL!!!)

> > >

> > > I have also eventually managed to get some BH4 - currently in freezer,

> > waiting until after Christmas to be brave enough to try (understand can

> > cause huge detox initially)!.

> > >

> > > Have appt with genetics just after Christmas to investigate link with

> > Charlie (asd) and , (blood disorder no asd but lots of asd traits). In

> > our case they are definitely connected and both a result of biochemical

> > inbalances/errors.

> > >

> > > BW

> > >

> > > Alison R

> > >

> >

> >

> >

>

[Guest guest]

Hello Alison,

WE completed several tests.DrYasko made her comments on the test results and

also wrote a one page comments and added her view for the supplement lists.

Anyway what she says;

CSA....my son's lysozme is just above the ref range, she is recommending Bowel

RNA,Negeral inflammation RNA and Cytokine RNA for this. Candida is+2, so she

recom.Mycology RNA+candisol+nystatin or IMF 7

In bacterial culture there are some strep....she recom.STRX+IMF5+naturomycin

lithium is low,she recom.lithium then B12

She hasn't made much comments about the metals which were low on the test,she

says minimal comments until the seizures under control

My son's metabolic profile...Riboflavin and ultimate B she suggests,because

looks they are in high need

Amino acids in urine...kidney RNA.SHMT spray,leaky gut RNA,once they ar ein

place adding PS,Amino Assists spray

Says..wait to stop any added taurine until it climbs on its own with methylation

support..,all the values here are within the ref.range..include ammonia...but

creatinine is high..,that's why she recom.kindney supports and also rhodiola

root...

In neurotransmitters...(urine) epinephrine and norepinephrine were low..she

says when ready start PS

Serotonin is low...recom.seromood....ofcourse checking with the dr to see if it

is ok with the seizure medication.

Special digestive enzymes which are higher inpancreatin is recom.

The test from GOSH Amino acids in plasma was High glycine....she

recom.methlmate A+B+B12 and again neruotransmitters in CSF dhydrobiopterin was

high..she says..NADH or ALA98C caps.

In her notes;she suggests;start with lithium then B12,soy free PS,then SHMT

spray,then methymateA+B

creatinine needs attention, to be loweredsome gut bugs needs to be dealth

with.She is not sure H.pylori plays a role here/.

I ordered supplements which she recommended except probiotics,they don't send

outside USA.However Breakspears " profolora " from BioBotanical has one or two

elements similar which she recommends, s it will be OK I think.

So..I would like to follow her recommendation, I sent a message to DrGoyal ..We

will see him in January but I don't want to wait as my son's seizures are still

in present.I would like to give him lithium but I am a bit timid.Revita pop i

think is OK for B12.

As a summary I am happy for all these interpretation, if I can get DrG.support

,it will be nice.I have difficulty for following her forum though.

As you know my son had so many tests to see if we can catch any clue for his

seizures, so far they haven't found something significant.Yasko thinks (and also

send me an article )..lack of B12 can cause seizures..MY suspicion is hormonal

now, testesterone level.I will ask dr G to check this in tests..

Another reason ofocurse is the metals perhaps hidden.But DrYasko made a comment

on his toxic metal test..that he is excreting despite the low B12...Suggesting

more frequentFMT alternate HMT+UTM

She wrote a word " ...as he is excreting well without methylation,so there may be

a jump in excration with methylation.... This is complicated,I need more

understanding how could it be possible if one pathway doesn't work properly, how

can he eliminate the metals if he has, ofcourse he has..If anyone would like to

make a comment, please do.

This is the situation now.

Nevin

> > >

> > > Thought it would be useful to update on our recent metabolic appt. Hope

> > you're reading this Nevin. (sorry this is long)

> > >

> > > Saw NHS metabolic consultant and presented YASKO genetic results along

> > with clinical tests done at Breakspear (methylation panel) to show

> > suggested genetic predisposition and actual clinical situation.

> > >

> > > Concentrated on CBS upregualtion and probable low BH4(as these are key

> > to my 2 kids).

> > >

> > > Dr (although very nice) was not aware of a role of BH4 in elimination of

> > ammonia - this worries me as it is well documented and you don't have to

> > look far to find this info. Apparantly they can test BH4 levels with a

> > finger prick and send card to switzerland (this would usually be for PKU

> > patients) I didn't push for this test as we are considering doing it at

> > Breakspear. If we do test we also need to test for BH2 conversion to BH4

> > not just overall BH4 levels. We have also been working hard to increase BH4

> > naturally for last 6 months and I thought if they did test and result is

> > not too low it would discredit all I was presenting.

> > >

> > > He kept comparing to PKU patients who are low in BH4 and said they did

> > not have urea cycle problems. I could not drum in that this was probably

> > because they don't have the other problems causing the big increase in

> > ammonia.

> > >

> > > He said that urine ammonia levels were not accurate and they would only

> > look at blood - again I could not get it through to him that we also need

> > to look at what the body is eliminating. Even if blood levels are not

> > elevated, if ammonia is continually produced at higher levels what effect

> > does this have on the body i.e low levels of BH4 and kidney stress. The

> > symptoms my kids suffer are not high ammonia - they are low BH$ because of

> > having to remove too much ammonia!!!

> > >

> > > In relation to CBS upregulation, he read the info and said if this was

> > the case we would see low methionine on amino acid test. At this point I

> > handed urine amino acid tests for both kids showing very low methionine -

> > he started to listen but then said again they would only consider blood

> > results. He actually did blood AA's on my kids last year and methionine was

> > only 14. This actually confirmed the problem with NHS testing - their range

> > for methionine is from 0 so if someone has continually low methionine

> > unless this is been looked for it would not get picked up.

> > >

> > > He did confirm that continual low methionine needed treatment (this is

> > why Breakspear have suggested methyl B12 injections). I asked if he would

> > do bloods to check and he agreed but only when the Kids are having venous

> > sample taken for something else.

> > >

> > > I plan to write to him asking for these tests to be done straight away

> > as otherwise we will have corrected it AGAIN taking any resposibility from

> > NHS.

> > >

> > > For Charlie (asd) I am quite happy to go this journey without NHS input

> > but for my daughter who has blood disorder I can't. She is under so

> > many consultants I have no choice but to tell them what I am doing. The

> > YASKO testing has uncovered how to help her blood disorder by bypassing her

> > gentic mutations and I'm determined to make them treat her (LOL!!!)

> > >

> > > I have also eventually managed to get some BH4 - currently in freezer,

> > waiting until after Christmas to be brave enough to try (understand can

> > cause huge detox initially)!.

> > >

> > > Have appt with genetics just after Christmas to investigate link with

> > Charlie (asd) and , (blood disorder no asd but lots of asd traits). In

> > our case they are definitely connected and both a result of biochemical

> > inbalances/errors.

> > >

> > > BW

> > >

> > > Alison R

> > >

> >

> >

> >

>

[Guest guest]

Hello Alison,

WE completed several tests.DrYasko made her comments on the test results and

also wrote a one page comments and added her view for the supplement lists.

Anyway what she says;

CSA....my son's lysozme is just above the ref range, she is recommending Bowel

RNA,Negeral inflammation RNA and Cytokine RNA for this. Candida is+2, so she

recom.Mycology RNA+candisol+nystatin or IMF 7

In bacterial culture there are some strep....she recom.STRX+IMF5+naturomycin

lithium is low,she recom.lithium then B12

She hasn't made much comments about the metals which were low on the test,she

says minimal comments until the seizures under control

My son's metabolic profile...Riboflavin and ultimate B she suggests,because

looks they are in high need

Amino acids in urine...kidney RNA.SHMT spray,leaky gut RNA,once they ar ein

place adding PS,Amino Assists spray

Says..wait to stop any added taurine until it climbs on its own with methylation

support..,all the values here are within the ref.range..include ammonia...but

creatinine is high..,that's why she recom.kindney supports and also rhodiola

root...

In neurotransmitters...(urine) epinephrine and norepinephrine were low..she

says when ready start PS

Serotonin is low...recom.seromood....ofcourse checking with the dr to see if it

is ok with the seizure medication.

Special digestive enzymes which are higher inpancreatin is recom.

The test from GOSH Amino acids in plasma was High glycine....she

recom.methlmate A+B+B12 and again neruotransmitters in CSF dhydrobiopterin was

high..she says..NADH or ALA98C caps.

In her notes;she suggests;start with lithium then B12,soy free PS,then SHMT

spray,then methymateA+B

creatinine needs attention, to be loweredsome gut bugs needs to be dealth

with.She is not sure H.pylori plays a role here/.

I ordered supplements which she recommended except probiotics,they don't send

outside USA.However Breakspears " profolora " from BioBotanical has one or two

elements similar which she recommends, s it will be OK I think.

So..I would like to follow her recommendation, I sent a message to DrGoyal ..We

will see him in January but I don't want to wait as my son's seizures are still

in present.I would like to give him lithium but I am a bit timid.Revita pop i

think is OK for B12.

As a summary I am happy for all these interpretation, if I can get DrG.support

,it will be nice.I have difficulty for following her forum though.

As you know my son had so many tests to see if we can catch any clue for his

seizures, so far they haven't found something significant.Yasko thinks (and also

send me an article )..lack of B12 can cause seizures..MY suspicion is hormonal

now, testesterone level.I will ask dr G to check this in tests..

Another reason ofocurse is the metals perhaps hidden.But DrYasko made a comment

on his toxic metal test..that he is excreting despite the low B12...Suggesting

more frequentFMT alternate HMT+UTM

She wrote a word " ...as he is excreting well without methylation,so there may be

a jump in excration with methylation.... This is complicated,I need more

understanding how could it be possible if one pathway doesn't work properly, how

can he eliminate the metals if he has, ofcourse he has..If anyone would like to

make a comment, please do.

This is the situation now.

Nevin

> > >

> > > Thought it would be useful to update on our recent metabolic appt. Hope

> > you're reading this Nevin. (sorry this is long)

> > >

> > > Saw NHS metabolic consultant and presented YASKO genetic results along

> > with clinical tests done at Breakspear (methylation panel) to show

> > suggested genetic predisposition and actual clinical situation.

> > >

> > > Concentrated on CBS upregualtion and probable low BH4(as these are key

> > to my 2 kids).

> > >

> > > Dr (although very nice) was not aware of a role of BH4 in elimination of

> > ammonia - this worries me as it is well documented and you don't have to

> > look far to find this info. Apparantly they can test BH4 levels with a

> > finger prick and send card to switzerland (this would usually be for PKU

> > patients) I didn't push for this test as we are considering doing it at

> > Breakspear. If we do test we also need to test for BH2 conversion to BH4

> > not just overall BH4 levels. We have also been working hard to increase BH4

> > naturally for last 6 months and I thought if they did test and result is

> > not too low it would discredit all I was presenting.

> > >

> > > He kept comparing to PKU patients who are low in BH4 and said they did

> > not have urea cycle problems. I could not drum in that this was probably

> > because they don't have the other problems causing the big increase in

> > ammonia.

> > >

> > > He said that urine ammonia levels were not accurate and they would only

> > look at blood - again I could not get it through to him that we also need

> > to look at what the body is eliminating. Even if blood levels are not

> > elevated, if ammonia is continually produced at higher levels what effect

> > does this have on the body i.e low levels of BH4 and kidney stress. The

> > symptoms my kids suffer are not high ammonia - they are low BH$ because of

> > having to remove too much ammonia!!!

> > >

> > > In relation to CBS upregulation, he read the info and said if this was

> > the case we would see low methionine on amino acid test. At this point I

> > handed urine amino acid tests for both kids showing very low methionine -

> > he started to listen but then said again they would only consider blood

> > results. He actually did blood AA's on my kids last year and methionine was

> > only 14. This actually confirmed the problem with NHS testing - their range

> > for methionine is from 0 so if someone has continually low methionine

> > unless this is been looked for it would not get picked up.

> > >

> > > He did confirm that continual low methionine needed treatment (this is

> > why Breakspear have suggested methyl B12 injections). I asked if he would

> > do bloods to check and he agreed but only when the Kids are having venous

> > sample taken for something else.

> > >

> > > I plan to write to him asking for these tests to be done straight away

> > as otherwise we will have corrected it AGAIN taking any resposibility from

> > NHS.

> > >

> > > For Charlie (asd) I am quite happy to go this journey without NHS input

> > but for my daughter who has blood disorder I can't. She is under so

> > many consultants I have no choice but to tell them what I am doing. The

> > YASKO testing has uncovered how to help her blood disorder by bypassing her

> > gentic mutations and I'm determined to make them treat her (LOL!!!)

> > >

> > > I have also eventually managed to get some BH4 - currently in freezer,

> > waiting until after Christmas to be brave enough to try (understand can

> > cause huge detox initially)!.

> > >

> > > Have appt with genetics just after Christmas to investigate link with

> > Charlie (asd) and , (blood disorder no asd but lots of asd traits). In

> > our case they are definitely connected and both a result of biochemical

> > inbalances/errors.

> > >

> > > BW

> > >

> > > Alison R

> > >

> >

> >

> >

>

[Guest guest]

Dear Alison,

I have no idea.I mentioned this hormonal issue as a possible cause for his

seizures to the neurologist,he said this was natural because of his age.That's

fine but if the hormones aretoo high to trigger seuzires or too low,something

can be done to prevent the attacks.,isn't it?.I've found some articles related

hormones-seizures and gave these to the neurologist,but he just ignored.I also

mentioned this when we were at the GOSH but they haven't checked hishormones.So

I am hoping through drGoyal will get an answer.I asked the doctors in my

country,I was told using hormonal (like pregesterone)as a topical cream is fine

but not oral or another way .DrAmy responded my question related with this issue

and she said she found the pregesterone cream is useful and also methylation RNA

is quite often helpful but we are not at this stage yet!

She recommends B12 hydroxyB12..

Thank you for your comments about all these supplements.I had lithium ,I have it

at home but NAC is included and it may trigger the attacks so I had to order a

new one from the holistic health.I think whatever I do,it will create a " detox "

effect and it may trigger seizures .Having said that his body temperature is

getting better, his feet are nice and warm as a contrast to the past,he sweated

from his head, funny cough comes and goes together with tiny red spots on his

chest...so possibly he is detoxing.I am also focusing on his diet.The first time

he put nearly 2 kgs after a long total stuck time,but he lost them so rapidly

during the seizure and following days then he started gaining the weight

again.This impressed our neurologist!

Anyway,yes I feel at least there is a path that worth trying otherwise there is

no treatment plan.Having said that I haven't heard DrGoyal's view yet!

I am glad you are all responding to he protocol and you are handling

confidently.This is important.I should also get myself communicate with Yasko

group.Yasko protocol as a whole is overwhelming, too complicated,lots of

information but also some clarity that I can understand, just absorbing all of

these will take time for me..Anyway, I am trying..

Keep in touch

Nevin

>

> > **

> >

> >

> > **

> > These are hormone related tests and you should be able to get those on NHS

> > if Goyal asks

> >

> > Mx

> >

> > In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> > Nevin.Penny@... writes:

> >

> > He asked me to mention these tests to Dr..Hormones;Dhea-s L.H Estradiol

> > Free testesterone S.H.B.Q..I don't know what it means all but I will ask to

> > drGoyal in January.

> >

> >

> >

>

[Guest guest]

Dear Alison,

I have no idea.I mentioned this hormonal issue as a possible cause for his

seizures to the neurologist,he said this was natural because of his age.That's

fine but if the hormones aretoo high to trigger seuzires or too low,something

can be done to prevent the attacks.,isn't it?.I've found some articles related

hormones-seizures and gave these to the neurologist,but he just ignored.I also

mentioned this when we were at the GOSH but they haven't checked hishormones.So

I am hoping through drGoyal will get an answer.I asked the doctors in my

country,I was told using hormonal (like pregesterone)as a topical cream is fine

but not oral or another way .DrAmy responded my question related with this issue

and she said she found the pregesterone cream is useful and also methylation RNA

is quite often helpful but we are not at this stage yet!

She recommends B12 hydroxyB12..

Thank you for your comments about all these supplements.I had lithium ,I have it

at home but NAC is included and it may trigger the attacks so I had to order a

new one from the holistic health.I think whatever I do,it will create a " detox "

effect and it may trigger seizures .Having said that his body temperature is

getting better, his feet are nice and warm as a contrast to the past,he sweated

from his head, funny cough comes and goes together with tiny red spots on his

chest...so possibly he is detoxing.I am also focusing on his diet.The first time

he put nearly 2 kgs after a long total stuck time,but he lost them so rapidly

during the seizure and following days then he started gaining the weight

again.This impressed our neurologist!

Anyway,yes I feel at least there is a path that worth trying otherwise there is

no treatment plan.Having said that I haven't heard DrGoyal's view yet!

I am glad you are all responding to he protocol and you are handling

confidently.This is important.I should also get myself communicate with Yasko

group.Yasko protocol as a whole is overwhelming, too complicated,lots of

information but also some clarity that I can understand, just absorbing all of

these will take time for me..Anyway, I am trying..

Keep in touch

Nevin

>

> > **

> >

> >

> > **

> > These are hormone related tests and you should be able to get those on NHS

> > if Goyal asks

> >

> > Mx

> >

> > In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> > Nevin.Penny@... writes:

> >

> > He asked me to mention these tests to Dr..Hormones;Dhea-s L.H Estradiol

> > Free testesterone S.H.B.Q..I don't know what it means all but I will ask to

> > drGoyal in January.

> >

> >

> >

>

[Guest guest]

Dear Alison,

I have no idea.I mentioned this hormonal issue as a possible cause for his

seizures to the neurologist,he said this was natural because of his age.That's

fine but if the hormones aretoo high to trigger seuzires or too low,something

can be done to prevent the attacks.,isn't it?.I've found some articles related

hormones-seizures and gave these to the neurologist,but he just ignored.I also

mentioned this when we were at the GOSH but they haven't checked hishormones.So

I am hoping through drGoyal will get an answer.I asked the doctors in my

country,I was told using hormonal (like pregesterone)as a topical cream is fine

but not oral or another way .DrAmy responded my question related with this issue

and she said she found the pregesterone cream is useful and also methylation RNA

is quite often helpful but we are not at this stage yet!

She recommends B12 hydroxyB12..

Thank you for your comments about all these supplements.I had lithium ,I have it

at home but NAC is included and it may trigger the attacks so I had to order a

new one from the holistic health.I think whatever I do,it will create a " detox "

effect and it may trigger seizures .Having said that his body temperature is

getting better, his feet are nice and warm as a contrast to the past,he sweated

from his head, funny cough comes and goes together with tiny red spots on his

chest...so possibly he is detoxing.I am also focusing on his diet.The first time

he put nearly 2 kgs after a long total stuck time,but he lost them so rapidly

during the seizure and following days then he started gaining the weight

again.This impressed our neurologist!

Anyway,yes I feel at least there is a path that worth trying otherwise there is

no treatment plan.Having said that I haven't heard DrGoyal's view yet!

I am glad you are all responding to he protocol and you are handling

confidently.This is important.I should also get myself communicate with Yasko

group.Yasko protocol as a whole is overwhelming, too complicated,lots of

information but also some clarity that I can understand, just absorbing all of

these will take time for me..Anyway, I am trying..

Keep in touch

Nevin

>

> > **

> >

> >

> > **

> > These are hormone related tests and you should be able to get those on NHS

> > if Goyal asks

> >

> > Mx

> >

> > In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> > Nevin.Penny@... writes:

> >

> > He asked me to mention these tests to Dr..Hormones;Dhea-s L.H Estradiol

> > Free testesterone S.H.B.Q..I don't know what it means all but I will ask to

> > drGoyal in January.

> >

> >

> >

>

[Guest guest]

We've done most of our hormone tests through Dr Goyal and a private

endocrinologist - NHS would only do estradiol and early morning cortisol (which

was useless for us)!

x

>

> These are hormone related tests and you should be able to get those on NHS

> if Goyal asks

>

> Mx

>

>

> In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> Nevin.Penny@... writes:

>

> He asked me to mention these tests to Dr..Hormones;Dhea-s L.H Estradiol

> Free testesterone S.H.B.Q..I don't know what it means all but I will ask to

> drGoyal in January.

>

[Guest guest]

We've done most of our hormone tests through Dr Goyal and a private

endocrinologist - NHS would only do estradiol and early morning cortisol (which

was useless for us)!

x

>

> These are hormone related tests and you should be able to get those on NHS

> if Goyal asks

>

> Mx

>

>

> In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> Nevin.Penny@... writes:

>

> He asked me to mention these tests to Dr..Hormones;Dhea-s L.H Estradiol

> Free testesterone S.H.B.Q..I don't know what it means all but I will ask to

> drGoyal in January.

>

[Guest guest]

We've done most of our hormone tests through Dr Goyal and a private

endocrinologist - NHS would only do estradiol and early morning cortisol (which

was useless for us)!

x

>

> These are hormone related tests and you should be able to get those on NHS

> if Goyal asks

>

> Mx

>

>

> In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> Nevin.Penny@... writes:

>

> He asked me to mention these tests to Dr..Hormones;Dhea-s L.H Estradiol

> Free testesterone S.H.B.Q..I don't know what it means all but I will ask to

> drGoyal in January.

>

[Guest guest]

Dear Janet,

I will focus on Yasko protocol and hoping to get support from Dr Goyal > I can

not run any treatment for my son on my own, he is 18 and has seizures.I am

hoping to Dr Goyal's support on this treatment and chelation is not the top of

agenda at present even DrAmy made this comments.But I will loook at Yasko's

supplements for detoxing particularly metals to see if it contradicts with

anything.I think RNAs good with us but my son is on the lower doses at

present,not on the fulllevel.SO we are trying slowly adapt the protocol .

Viruses are also my concern despite nothing showed up on the NHS testings.I

need to discuss the whole treatment plan with drGoyal and I am looking forward

to meet him.

I hope I answered your question.

All the best

nevin

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> When Yasko says EDTA just use Activated Liquid Zeolites instead, still not

> sure why she hasn't got her head around this supp because it soaks up ammonia

> very effectively also but she is the same with enzymes, wish we could get her

to

> sit down with Devin.

>

> Making that switch and keeping going with the Methylation supports sounds

> as if it would fit better for you at the mo than AC chelation, he will already

> be detoxing from the ALA he had before, well for approx 2 years post his first

> dose and by then you may have his cycle spinning properly and he'll be doing

it

> all by himself

>

> This is why I know I have to revisit Yasko or I'll be chelating Sam for

> ever unless I get real lucky and removing metals fixes Methylation, I think

> it is a bit and can but it takes like forever.............

>

> Mandi x

>

>

> In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> Nevin.Penny@... writes:

> So, I

> want to go for a while with Yasko if I can, to support his organs then when

> she starts recommending EDTA or any other chealation agents,I would like to

> try AC with lower dose.having said that I know it will be so complicated as

I

> am already managing all these supplements and their effects with difficulty

> and he is very sensitive now..I am still suspicious about the herpes virus,I

> need to discuss this with

> drG.

>

[Guest guest]

Dear Janet,

I will focus on Yasko protocol and hoping to get support from Dr Goyal > I can

not run any treatment for my son on my own, he is 18 and has seizures.I am

hoping to Dr Goyal's support on this treatment and chelation is not the top of

agenda at present even DrAmy made this comments.But I will loook at Yasko's

supplements for detoxing particularly metals to see if it contradicts with

anything.I think RNAs good with us but my son is on the lower doses at

present,not on the fulllevel.SO we are trying slowly adapt the protocol .

Viruses are also my concern despite nothing showed up on the NHS testings.I

need to discuss the whole treatment plan with drGoyal and I am looking forward

to meet him.

I hope I answered your question.

All the best

nevin

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> When Yasko says EDTA just use Activated Liquid Zeolites instead, still not

> sure why she hasn't got her head around this supp because it soaks up ammonia

> very effectively also but she is the same with enzymes, wish we could get her

to

> sit down with Devin.

>

> Making that switch and keeping going with the Methylation supports sounds

> as if it would fit better for you at the mo than AC chelation, he will already

> be detoxing from the ALA he had before, well for approx 2 years post his first

> dose and by then you may have his cycle spinning properly and he'll be doing

it

> all by himself

>

> This is why I know I have to revisit Yasko or I'll be chelating Sam for

> ever unless I get real lucky and removing metals fixes Methylation, I think

> it is a bit and can but it takes like forever.............

>

> Mandi x

>

>

> In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> Nevin.Penny@... writes:

> So, I

> want to go for a while with Yasko if I can, to support his organs then when

> she starts recommending EDTA or any other chealation agents,I would like to

> try AC with lower dose.having said that I know it will be so complicated as

I

> am already managing all these supplements and their effects with difficulty

> and he is very sensitive now..I am still suspicious about the herpes virus,I

> need to discuss this with

> drG.

>

[Guest guest]

Dear Janet,

I will focus on Yasko protocol and hoping to get support from Dr Goyal > I can

not run any treatment for my son on my own, he is 18 and has seizures.I am

hoping to Dr Goyal's support on this treatment and chelation is not the top of

agenda at present even DrAmy made this comments.But I will loook at Yasko's

supplements for detoxing particularly metals to see if it contradicts with

anything.I think RNAs good with us but my son is on the lower doses at

present,not on the fulllevel.SO we are trying slowly adapt the protocol .

Viruses are also my concern despite nothing showed up on the NHS testings.I

need to discuss the whole treatment plan with drGoyal and I am looking forward

to meet him.

I hope I answered your question.

All the best

nevin

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> When Yasko says EDTA just use Activated Liquid Zeolites instead, still not

> sure why she hasn't got her head around this supp because it soaks up ammonia

> very effectively also but she is the same with enzymes, wish we could get her

to

> sit down with Devin.

>

> Making that switch and keeping going with the Methylation supports sounds

> as if it would fit better for you at the mo than AC chelation, he will already

> be detoxing from the ALA he had before, well for approx 2 years post his first

> dose and by then you may have his cycle spinning properly and he'll be doing

it

> all by himself

>

> This is why I know I have to revisit Yasko or I'll be chelating Sam for

> ever unless I get real lucky and removing metals fixes Methylation, I think

> it is a bit and can but it takes like forever.............

>

> Mandi x

>

>

> In a message dated 19/12/2011 16:17:36 GMT Standard Time,

> Nevin.Penny@... writes:

> So, I

> want to go for a while with Yasko if I can, to support his organs then when

> she starts recommending EDTA or any other chealation agents,I would like to

> try AC with lower dose.having said that I know it will be so complicated as

I

> am already managing all these supplements and their effects with difficulty

> and he is very sensitive now..I am still suspicious about the herpes virus,I

> need to discuss this with

> drG.

>