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Tammy,

The Genova test does not include the oxalate markers, so for this issue of high

oxalate, what Genova offers is not a useful test. Neither is Metametrix, though

I've talked to them numerous times about adding in this feature, but they won't.

Last September, a group of scientists in Poland (working with me) published a

study that is the first one to establish the prevalance of oxalate issues in

autism. see: http://www.ncbi.nlm.nih.gov/pubmed/21911305

This study was needed because so many doctors assumed that oxalate being high in

autism only represented a " small subgroup " that was probably defined by those

with urinary issues. That's why many of these doctors were not seeking this

information on their patients or considering that being low oxalate would help

in children with autism. Now we know from this study that being high in oxalate

is characteristic of the autism population.

I just got back from a trip to Belgium and Germany to go to a meeting of about

65 oxalate scientists.

While over there, in Belgium, I got to visit in the home of a family of one of

the first girls with autism to do the low oxalate diet. She had been severely

autistic when she was about three, but now, after five or six years of being

reduced in oxalate in the diet, this now young teenager has no signs of autism

that I could see. She still has some vision problems that she inherited from her

dad, but that is unrelated.

She and her ten year old sister on their own prepared for me a gourmet meal with

several courses, and a fancy menu. They had done a lot of chopping and artistry

making the plates and the table look beautiful and we had several courses with

them playing the waiter.

They greeted me with a lot of laughter, and giggles and hugs and playing fun

songs on their piano, and showing off their painted fingernails, and other

delights. They were very excited to have a guest there to fuss over.

Going low oxalate is not a quick fix, but it is a slow reduction in toxicity. We

are still learning a lot of what keeps the oxalate levels from coming down in

some people, but overuse of medications seems to be a lot of what does that,as

I've seen on people with a series of GPL OATs where they can tell me what their

doctor did in between OATs. Problems in oxalate increasing after therapy seems

especially an issue with the antimicrobial/antifungal therapies, really opposite

of what Great Plains has been saying.

I'm certainly willing to consider that diflucan and nystatin raising oxalate

levels may not happen in some people, and for that reason, I am seeking more

" before and after " antimicrobial therapy OATs to be sure about the patterns we

have seen in this area that have made us concerned. If anyone has before and

after GPL OATs when antifungal or antibiotic therapy was used between them,

please write me, but realize you cannot see this happening without removing the

creatinine correction because raising oxalate can lower everything else on the

test, including oxalate.

The Great Plains test does offer three analytes important for spotting the

oxalate problem and helping to determine the source of the oxalate.

Unfortunately, since oxalate affects the secretion of creatinine, by making

secretion from kidney tubule cells unstable, you cannot tell if this huge shift

is happening except after the test has gone through new recalculations using a

method that gets rid of the already-there correction via creatinine.

I have now analyzed more than 550 of these OATS finding statistical PATTERNS in

the amino acid test that are not reported in the writeup of the results that you

get from Great Plains.

Labs only look at whether something is above or below a reference range, but

there is a lot of information hiding in the changing levels below the reference

range, and especially when some things are low but you cannot tell that they are

low because the lab gives zero as the bottom of the reference range. I compare

you to hundreds of other people and can see when you are abnormally low compared

to hundred of other people with a similar diagnosis.

Almosts all urine data is skewed and that is why so many analytes have

reference ranges that start with zero. Labs calculate a zero start to the

reference range when an analyte's levels are skewed high. When a good chunk of

people have high levels on an anlyate, then when the lab calculates two standard

deviations below the mean it will take the bottom of the range into numbers that

are far below zero, and the labs change that value to zero because people would

know something was up if the bottom of the range was a negative number.

Our Polish study, published in the European Journal of Paediatric Neurology,

studied only the children who would be assumed to have no risks for being high

in oxalate: so they didn't have seizures, they didn't have kidney stones even in

their families or kidney issues of their own. They were not on special diets

that would increase their oxalate levels, and they hadn't been on antibiotics,

etc.

In these children 35 out of 36 children with autism had oxalate levels that did

not even overlap at all with control children in both blood and urine, but they

were higher than all sixty control children in one of these places, or in both

of these compartments where we measure oxalate. This may be one of the most

consistent findings ever found in autism.

The one child who overlapped with controls just barely overlapped, but the

oxalate levels were so high in most of these children that in a conference I

just attended on primary hyperoxaluria (a disease where people die from their

bodies making too much oxalate) I had scientists noticing how high the levels

were in the study and wondering why the children with autism who had these

levels were still alive. That's what they said to me when they saw the data.

Our autism doctors don't realize how extremely high these levels are, especially

to professionals in the oxalate field. Many doctors also don't know how toxic

oxalate is in general, and don't warn people about spinach and almond milk, and

quinoa and amaranth, and buckwheat and chocolate.

So, if you want information about oxalate in your child, don't use the Genova

test, but use the test from Great Plains. Nataf's lab also measures oxalate on

their organic acid test but I don't have enough of their test to do the urine

correction. As far as I know, Great Plains and Nataf's lab (and maybe the

European Laboratory) are the only ones who can give you this information . You

can order an oxalate only test from Labcorp or Quest that only measures oxalate

but it cannot give you the context for it being high.

A DAN! doctor recently sent me repeat tests on three children collecting pee

every time they peed on the same day, and the levels of oxalate and creatinine

bounced all over the place. The standard in the oxalate field is to use 24 hour

tests when you measure oxalate by itself.

>

> Our doc uses Genova Diagnostics. (Our ins covered most of it). Another option

would be Great Plains Lab. If you dont have a doc to order labs, they will hook

you up with one (for an additional fee, of course). I believe the price of the

lab includes a phone consultation to go over the results.

>

> Tammy

>

> Sent from my Kindle Fire

>

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Tammy,

The Genova test does not include the oxalate markers, so for this issue of high

oxalate, what Genova offers is not a useful test. Neither is Metametrix, though

I've talked to them numerous times about adding in this feature, but they won't.

Last September, a group of scientists in Poland (working with me) published a

study that is the first one to establish the prevalance of oxalate issues in

autism. see: http://www.ncbi.nlm.nih.gov/pubmed/21911305

This study was needed because so many doctors assumed that oxalate being high in

autism only represented a " small subgroup " that was probably defined by those

with urinary issues. That's why many of these doctors were not seeking this

information on their patients or considering that being low oxalate would help

in children with autism. Now we know from this study that being high in oxalate

is characteristic of the autism population.

I just got back from a trip to Belgium and Germany to go to a meeting of about

65 oxalate scientists.

While over there, in Belgium, I got to visit in the home of a family of one of

the first girls with autism to do the low oxalate diet. She had been severely

autistic when she was about three, but now, after five or six years of being

reduced in oxalate in the diet, this now young teenager has no signs of autism

that I could see. She still has some vision problems that she inherited from her

dad, but that is unrelated.

She and her ten year old sister on their own prepared for me a gourmet meal with

several courses, and a fancy menu. They had done a lot of chopping and artistry

making the plates and the table look beautiful and we had several courses with

them playing the waiter.

They greeted me with a lot of laughter, and giggles and hugs and playing fun

songs on their piano, and showing off their painted fingernails, and other

delights. They were very excited to have a guest there to fuss over.

Going low oxalate is not a quick fix, but it is a slow reduction in toxicity. We

are still learning a lot of what keeps the oxalate levels from coming down in

some people, but overuse of medications seems to be a lot of what does that,as

I've seen on people with a series of GPL OATs where they can tell me what their

doctor did in between OATs. Problems in oxalate increasing after therapy seems

especially an issue with the antimicrobial/antifungal therapies, really opposite

of what Great Plains has been saying.

I'm certainly willing to consider that diflucan and nystatin raising oxalate

levels may not happen in some people, and for that reason, I am seeking more

" before and after " antimicrobial therapy OATs to be sure about the patterns we

have seen in this area that have made us concerned. If anyone has before and

after GPL OATs when antifungal or antibiotic therapy was used between them,

please write me, but realize you cannot see this happening without removing the

creatinine correction because raising oxalate can lower everything else on the

test, including oxalate.

The Great Plains test does offer three analytes important for spotting the

oxalate problem and helping to determine the source of the oxalate.

Unfortunately, since oxalate affects the secretion of creatinine, by making

secretion from kidney tubule cells unstable, you cannot tell if this huge shift

is happening except after the test has gone through new recalculations using a

method that gets rid of the already-there correction via creatinine.

I have now analyzed more than 550 of these OATS finding statistical PATTERNS in

the amino acid test that are not reported in the writeup of the results that you

get from Great Plains.

Labs only look at whether something is above or below a reference range, but

there is a lot of information hiding in the changing levels below the reference

range, and especially when some things are low but you cannot tell that they are

low because the lab gives zero as the bottom of the reference range. I compare

you to hundreds of other people and can see when you are abnormally low compared

to hundred of other people with a similar diagnosis.

Almosts all urine data is skewed and that is why so many analytes have

reference ranges that start with zero. Labs calculate a zero start to the

reference range when an analyte's levels are skewed high. When a good chunk of

people have high levels on an anlyate, then when the lab calculates two standard

deviations below the mean it will take the bottom of the range into numbers that

are far below zero, and the labs change that value to zero because people would

know something was up if the bottom of the range was a negative number.

Our Polish study, published in the European Journal of Paediatric Neurology,

studied only the children who would be assumed to have no risks for being high

in oxalate: so they didn't have seizures, they didn't have kidney stones even in

their families or kidney issues of their own. They were not on special diets

that would increase their oxalate levels, and they hadn't been on antibiotics,

etc.

In these children 35 out of 36 children with autism had oxalate levels that did

not even overlap at all with control children in both blood and urine, but they

were higher than all sixty control children in one of these places, or in both

of these compartments where we measure oxalate. This may be one of the most

consistent findings ever found in autism.

The one child who overlapped with controls just barely overlapped, but the

oxalate levels were so high in most of these children that in a conference I

just attended on primary hyperoxaluria (a disease where people die from their

bodies making too much oxalate) I had scientists noticing how high the levels

were in the study and wondering why the children with autism who had these

levels were still alive. That's what they said to me when they saw the data.

Our autism doctors don't realize how extremely high these levels are, especially

to professionals in the oxalate field. Many doctors also don't know how toxic

oxalate is in general, and don't warn people about spinach and almond milk, and

quinoa and amaranth, and buckwheat and chocolate.

So, if you want information about oxalate in your child, don't use the Genova

test, but use the test from Great Plains. Nataf's lab also measures oxalate on

their organic acid test but I don't have enough of their test to do the urine

correction. As far as I know, Great Plains and Nataf's lab (and maybe the

European Laboratory) are the only ones who can give you this information . You

can order an oxalate only test from Labcorp or Quest that only measures oxalate

but it cannot give you the context for it being high.

A DAN! doctor recently sent me repeat tests on three children collecting pee

every time they peed on the same day, and the levels of oxalate and creatinine

bounced all over the place. The standard in the oxalate field is to use 24 hour

tests when you measure oxalate by itself.

>

> Our doc uses Genova Diagnostics. (Our ins covered most of it). Another option

would be Great Plains Lab. If you dont have a doc to order labs, they will hook

you up with one (for an additional fee, of course). I believe the price of the

lab includes a phone consultation to go over the results.

>

> Tammy

>

> Sent from my Kindle Fire

>

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