Re: sulfur intolerance/urine amino acids

[Guest guest]

Hi, Trina.

I think there's a good chance that you have a CBS (cystathionine

beta synthase) upregulation.

If you can swing it, I would suggest getting the Complete Basic SNP

Panel I from http://www.testing4health.com, because that will tell

you for sure about this.

The Doctor's Data urine amino acids test is less expensive, and it

will give you clues (by looking at taurine and ammonia levels) about

this.

Ideally, a good combination of tests would include these two plus a

urine organic acids test or a metabolic analysis profile. All these

tests are offered on that site.

Doing these tests while you are taking the things that are causing

you to experience these symptoms would be more likely to show up

what the problems are, because that will be more likely to show high

ammonia or abnormalities in sulfur metabolism, if present.

Rich

>

> Hi--

>

> I have sulfur-smelling burps (and to a lesser extent, sulfur-

smelling gas)--does this necessarily mean I'm sulfur-intolerant? I

don't notice it specifically in conjuction with sulfur foods. I get

it sometimes after drinking whey, but not always. I eat brocolli

almost every day, but don't notice burping any more with it. I eat a

very high protein diet. I actually had a lot more sulfur burping

before I started the whey, when I was doing all the yeast drugs

(especially noticed it right after taking the amphotericin-B powder

and nystatin powder--together, 1/2 hour before meals) and a very

high protein diet. Before this, I don't think I had any sulfur

burping, even though I was on a high protein diet (not quite as

high) and ate eggs (which I never liked). Currently, I suppose my

diet is slightly less high in protein than when I was on the yeast

drugs, since I'm doing 3 meals a day instead of 4. And I'm taking

molybdenum, which I wasn't then. Although I'm trying to maintain my

> meat and veggie diet, I have craved fruit and grains more and not

really wanted protein so much during this round of whey.

>

> The immunopro seems to be helping (a little), but it's also

causing a lot of side effects. This is fine if it's part of the

healing, but I'd like to be sure I'm not hurting myself with it.

Would getting the urine amino acids test help me figure this out?

Would the cysteine level in it be valid while I'm taking whey? And

it would give me an indirect measure of my glutathione level, too,

right? Or is there another test that would be more useful or

supplements to experiment with?

>

> Thanks,

> Trina

>

>

> ---------------------------------

> How low will we go? Check out Messenger's low PC-to-Phone

call rates.

>

>

[Guest guest]

Hi, Janet.

> So my question is: I get that I need to raise my glutathione.

But I have the CBSA360A +/+ and the SUOX +/-. So I have to be so

careful with sulfur donors. So my question is, how am I going to

raise my glutathione??? I know I have to do the ammonia protocoll

and limit my sulfur donors to get well I have to get that

glutathione up! How???

***The idea is that once your methylation cycle and your

transsulfuration pathway are operating normally again, your liver

will automatically bring your glutathione levels back up to normal.

You will be producing glutathione in the same way that the vast

majority of the human race (those without autism or CFS) do it.

This was shown in the paper by S. Jill et al. in autism. The

kids had low glutathione and a methylation cycle block. They

treated the methylation cycle block using methylcobalamin, folinic

acid and betaine (TMG), and the glutathione level came up, even

though they did not directly supplement glutathione or the amino

acids that make it up.

>

> I am hoping this list gets past the (maybe it will work and

maybe it won't work phase) and finally gets to getting the tests

done, so we can address the things that are in the way and finally

get well.

***Well, everyone has to make their own decisions, and everyone's

situation is different, so I don't think we should be at all

coercive about this. Some people can and will try it, and they will

be the pioneers. Others will learn from their experience.

>

> Thank you for all the energy you put into this group.

>

> Thank you for helping me,

***You're very welcome, Janet. Thanks for being willing to try

this, and I sincerely hope it pays off for you.

>

> Janet

***Rich

[Guest guest]

Hi Janet,

Not sure about the details but somewhere I read on the Yasko forum that once

you start Methylating properly your body will naturally start converting the

correct amino acids(I believe it has to do with Taurine and Cysteine) to

gluthathione. No need to worry at this point . . . just keep following Amy's

program.

Take care, Sue T

Janet s <jgstev716@...> wrote:

HI Rich,

I do have my genetics back and I DO THINK this is my way out. I don't care who

knows about 20 of my genes. I am disabled already!!!

So my question is: I get that I need to raise my glutathione. But I have the

CBSA360A +/+ and the SUOX +/-. So I have to be so careful with sulfur donors. So

my question is, how am I going to raise my glutathione??? I know I have to do

the ammonia protocoll and limit my sulfur donors to get well I have to get that

glutathione up! How???

I am hoping this list gets past the (maybe it will work and maybe it won't work

phase) and finally gets to getting the tests done, so we can address the things

that are in the way and finally get well.

Thank you for all the energy you put into this group.

Thank you for helping me,

Janet

rvankonynen <richvank@...> wrote:

Hi, Trina.

I think there's a good chance that you have a CBS (cystathionine

beta synthase) upregulation.

If you can swing it, I would suggest getting the Complete Basic SNP

Panel I from http://www.testing4health.com, because that will tell

you for sure about this.

The Doctor's Data urine amino acids test is less expensive, and it

will give you clues (by looking at taurine and ammonia levels) about

this.

Ideally, a good combination of tests would include these two plus a

urine organic acids test or a metabolic analysis profile. All these

tests are offered on that site.

Doing these tests while you are taking the things that are causing

you to experience these symptoms would be more likely to show up

what the problems are, because that will be more likely to show high

ammonia or abnormalities in sulfur metabolism, if present.

Rich

>

> Hi--

>

> I have sulfur-smelling burps (and to a lesser extent, sulfur-

smelling gas)--does this necessarily mean I'm sulfur-intolerant? I

don't notice it specifically in conjuction with sulfur foods. I get

it sometimes after drinking whey, but not always. I eat brocolli

almost every day, but don't notice burping any more with it. I eat a

very high protein diet. I actually had a lot more sulfur burping

before I started the whey, when I was doing all the yeast drugs

(especially noticed it right after taking the amphotericin-B powder

and nystatin powder--together, 1/2 hour before meals) and a very

high protein diet. Before this, I don't think I had any sulfur

burping, even though I was on a high protein diet (not quite as

high) and ate eggs (which I never liked). Currently, I suppose my

diet is slightly less high in protein than when I was on the yeast

drugs, since I'm doing 3 meals a day instead of 4. And I'm taking

molybdenum, which I wasn't then. Although I'm trying to maintain my

> meat and veggie diet, I have craved fruit and grains more and not

really wanted protein so much during this round of whey.

>

> The immunopro seems to be helping (a little), but it's also

causing a lot of side effects. This is fine if it's part of the

healing, but I'd like to be sure I'm not hurting myself with it.

Would getting the urine amino acids test help me figure this out?

Would the cysteine level in it be valid while I'm taking whey? And

it would give me an indirect measure of my glutathione level, too,

right? Or is there another test that would be more useful or

supplements to experiment with?

>

> Thanks,

> Trina

>

>

> ---------------------------------

> How low will we go? Check out Messenger's low PC-to-Phone

call rates.

>

>

[Guest guest]

Thanks Rich,

I'm willing to do the genetic testing, but obviously if the whey will work,

I'd rather do that! If I do have the CBS up-regulation, that means I have to

stop the whey right? But it's been helping me some, so I don't want to stop it

if it's actually going to help. But if it's hurting, then of course I should

stop it.

If I just get the amino acid test and it's normal while I'm on high protein

and whey, would that be a pretty good indicator that I didn't have a CBS

up-regulation? Or would I still have to get the genetic testing to be sure?

If so, I might as well go straight to the genetic testing. But if I get the

genetic testing, am I still supposed to get all the urine testing at the same

time? What does the urine testing tell you that the genetic testing doesn't?

Do you know what's covered in the metabolic analysis profile? I can't tell

from the summary. It mentions both organic and amino acids--would it give you an

overview of the amino acid and organic acid tests, or do you still have to get

the amino one separately?

Thanks,

Trina

rvankonynen <richvank@...> wrote:

Hi, Trina.

I think there's a good chance that you have a CBS (cystathionine

beta synthase) upregulation.

If you can swing it, I would suggest getting the Complete Basic SNP

Panel I from http://www.testing4health.com, because that will tell

you for sure about this.

The Doctor's Data urine amino acids test is less expensive, and it

will give you clues (by looking at taurine and ammonia levels) about

this.

Ideally, a good combination of tests would include these two plus a

urine organic acids test or a metabolic analysis profile. All these

tests are offered on that site.

Doing these tests while you are taking the things that are causing

you to experience these symptoms would be more likely to show up

what the problems are, because that will be more likely to show high

ammonia or abnormalities in sulfur metabolism, if present.

Rich

Recent Activity

16

New Members

Visit Your Group

[Guest guest]

Hi, Trina.

>

> Thanks Rich,

>

> I'm willing to do the genetic testing, but obviously if the whey

will work, I'd rather do that!

***I can certainly understand that.

If I do have the CBS up-regulation, that means I have to stop the

whey right?

***Yes.

But it's been helping me some, so I don't want to stop it if it's

actually going to help. But if it's hurting, then of course I should

stop it.

***Right. Kind of a dilemma.

>

> If I just get the amino acid test and it's normal while I'm on

high protein and whey, would that be a pretty good indicator that I

didn't have a CBS up-regulation?

***Yes, I think it would be, especially if you are the symptoms you

described when you give the urine sample for the test.

Or would I still have to get the genetic testing to be sure?

***That would be more direct, but you could probably infer it from

the urine amino acids test.

>

> If so, I might as well go straight to the genetic testing. But

if I get the genetic testing, am I still supposed to get all the

urine testing at the same time? What does the urine testing tell you

that the genetic testing doesn't?

Lots of things. The urine amino acids test will tell you whether

you are absorbing amino acids well from your gut, whether you are

catabolizing your own muscle protein faster than normal, whether you

are converting certain amino acids to others at normal rates,

whether there are bacteria in your gut that are metabolizing amino

acids and producing abnormal products, whether you are producing a

normal amount of creatinine or not and whether you may have diabetes

insipidus or not (these last two depend on using a 24-hour urine

sample).

A urine organic acids test will tell you how well various parts of

your metabolism of foods are working, will give information about

your neurotransmitters, your detox system, indirect information

about your glutathione levels, about bacteria or yeast infections in

the gut, levels of B12, other vitamins and folic acid, abnormalities

in metabolizing amino acids, etc.

>

> Do you know what's covered in the metabolic analysis profile? I

can't tell from the summary. It mentions both organic and amino

acids--would it give you an overview of the amino acid and organic

acid tests, or do you still have to get the amino one separately?

***You can see a sample metabolic analysis profile report here:

http://www.gdx.net/home/assessments/metabolic_analysis/reports/index2

..html

Note that there are two pages of results and a couple of pages of

diagrams. This test does not include amino acids, just organic

acids, so yes, you have to get the amino acids tested separately. I

prefer 24-hour collections for both, because I think they give a

more accurate average, as well as telling you your creatinine

production and your daily urine volume, which are useful pieces of

information.

>

> Thanks,

> Trina

>

***You're welcome.

***Rich

[Guest guest]

Thanks--

Do you know if the testing4health ones are 24-hour urine? And do you have a

preference between the MAP and the organic acids?

If I get the genetic tests, should I get the GAR?

Sorry to keep pumping you for info, but I really appreciate your help!

Trina

rvankonynen <richvank@...> wrote:

Hi, Trina.

>

> Thanks Rich,

>

> I'm willing to do the genetic testing, but obviously if the whey

will work, I'd rather do that!

***I can certainly understand that.

If I do have the CBS up-regulation, that means I have to stop the

whey right?

***Yes.

But it's been helping me some, so I don't want to stop it if it's

actually going to help. But if it's hurting, then of course I should

stop it.

***Right. Kind of a dilemma.

>

> If I just get the amino acid test and it's normal while I'm on

high protein and whey, would that be a pretty good indicator that I

didn't have a CBS up-regulation?

***Yes, I think it would be, especially if you are the symptoms you

described when you give the urine sample for the test.

Or would I still have to get the genetic testing to be sure?

***That would be more direct, but you could probably infer it from

the urine amino acids test.

>

> If so, I might as well go straight to the genetic testing. But

if I get the genetic testing, am I still supposed to get all the

urine testing at the same time? What does the urine testing tell you

that the genetic testing doesn't?

Lots of things. The urine amino acids test will tell you whether

you are absorbing amino acids well from your gut, whether you are

catabolizing your own muscle protein faster than normal, whether you

are converting certain amino acids to others at normal rates,

whether there are bacteria in your gut that are metabolizing amino

acids and producing abnormal products, whether you are producing a

normal amount of creatinine or not and whether you may have diabetes

insipidus or not (these last two depend on using a 24-hour urine

sample).

A urine organic acids test will tell you how well various parts of

your metabolism of foods are working, will give information about

your neurotransmitters, your detox system, indirect information

about your glutathione levels, about bacteria or yeast infections in

the gut, levels of B12, other vitamins and folic acid, abnormalities

in metabolizing amino acids, etc.

>

> Do you know what's covered in the metabolic analysis profile? I

can't tell from the summary. It mentions both organic and amino

acids--would it give you an overview of the amino acid and organic

acid tests, or do you still have to get the amino one separately?

***You can see a sample metabolic analysis profile report here:

http://www.gdx.net/home/assessments/metabolic_analysis/reports/index2

..html

Note that there are two pages of results and a couple of pages of

diagrams. This test does not include amino acids, just organic

acids, so yes, you have to get the amino acids tested separately. I

prefer 24-hour collections for both, because I think they give a

more accurate average, as well as telling you your creatinine

production and your daily urine volume, which are useful pieces of

information.

>

> Thanks,

> Trina

>

***You're welcome.

***Rich

---------------------------------

Music Unlimited - Access over 1 million songs.Try it free.

[Guest guest]

Hi, Trina.

>

> Thanks--

>

> Do you know if the testing4health ones are 24-hour urine?

***You can do them that way. You just collect all your urine for 24

hours, measure the total volume, mix it all together, take a sample,

and send that in.

And do you have a preference between the MAP and the organic acids?

***The organic acids test is more complete. It also costs more, and

it looks as though Amy's site is out of stock on the kits for that

one. I think she uses the Great Plains Laboratory organic acids

test, but I'm not sure of that. The MAP test would probably be

adequate.

>

> If I get the genetic tests, should I get the GAR?

***That's a good idea. That way, you will get the benefit of Amy's

up-to-date information. It sounds as though she is tailoring her

program for adults, so the GARs will probably reflect that, and I

think it would be worthwhile to get a GAR.

>

> Sorry to keep pumping you for info, but I really appreciate your

help!

***You're welcome, Trina. I hope this really pays off for you.

> Trina

***Rich

[Guest guest]

One more question (well, no promises!)--

I don't actually know that I have low glutathione. I assume I do based on my

symptoms and my reaction to whey, but I haven't gotten the RBC glutathione test

since you need a doctor (I have fairly flexible doctors, but it still takes a

lot of time and energy). Do you think it's safe to assume I have low

glutathione, or is it kind of dumb to spend the money on further tests without

knowing?

Trina

rvankonynen <richvank@...> wrote:

Hi, Trina.

>

> Thanks--

>

> Do you know if the testing4health ones are 24-hour urine?

***You can do them that way. You just collect all your urine for 24

hours, measure the total volume, mix it all together, take a sample,

and send that in.

And do you have a preference between the MAP and the organic acids?

***The organic acids test is more complete. It also costs more, and

it looks as though Amy's site is out of stock on the kits for that

one. I think she uses the Great Plains Laboratory organic acids

test, but I'm not sure of that. The MAP test would probably be

adequate.

>

> If I get the genetic tests, should I get the GAR?

***That's a good idea. That way, you will get the benefit of Amy's

up-to-date information. It sounds as though she is tailoring her

program for adults, so the GARs will probably reflect that, and I

think it would be worthwhile to get a GAR.

>

> Sorry to keep pumping you for info, but I really appreciate your

help!

***You're welcome, Trina. I hope this really pays off for you.

> Trina

***Rich

---------------------------------

See the all-new, redesigned .com. Check it out.

[Guest guest]

----- Original Message -----

From: rvankonynen

Hi, Trina.

>

> Thanks Rich,

>

> I'm willing to do the genetic testing, but obviously if the whey

will work, I'd rather do that!

***I can certainly understand that.

If I do have the CBS up-regulation, that means I have to stop the

whey right?

***Yes.

But it's been helping me some, so I don't want to stop it if it's

actually going to help. But if it's hurting, then of course I should

stop it.

***Right. Kind of a dilemma.

Adrienne asks:

how can it be that the test will tell her that something that is clearly

helping is bad for her. What kind of science is that????

[Guest guest]

Hi, Adrienne.

Whey protein is a rather complex substance, composed of a large number

of different amino acids. They all have their own biochemical

pathways. It's conceivable that most of them could be providing

benefit, while a minority are causing problems. If she was taking a

simple substance, such as a single amino acid, I think the picture

would be more black and white.

Rich

> Adrienne asks:

> how can it be that the test will tell her that something that is

clearly helping is bad for her. What kind of science is that????

[Guest guest]

But I think her felt experience of the stuff should be the decisive factor.

Factoring in after-effects of course, not just a high from ingestion.

Anyhow, nothing is simple. How many unmixed blessing do you suppose there are?

Not many I bet:-).

Adrienne

Re: sulfur intolerance/urine amino acids

Hi, Adrienne.

Whey protein is a rather complex substance, composed of a large number

of different amino acids. They all have their own biochemical

pathways. It's conceivable that most of them could be providing

benefit, while a minority are causing problems. If she was taking a

simple substance, such as a single amino acid, I think the picture

would be more black and white.

Rich

> Adrienne asks:

> how can it be that the test will tell her that something that is

clearly helping is bad for her. What kind of science is that????

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.