Re: Porphyrins question please, freaking out here

[Guest guest]

I have not exactly wrapped my mind around this one, but if you go to

the CK2 list, there is a paper in the files by Dr. Rossignol where he

discusses porphyrin testing. Might get you started down the right path.

Anne

>

> Hi, i just got the urinary porphyrins test results back from France.

>

> Anyone here know much about these?

>

> My child has a level of 3393/(nmol/gcr) of coproporphyrins I & III and

> The mean average on the test is stated as between 100 & 200 nmol/gcr.

>

> anyone help me here? looked at the files section of this site where a

> file is about porphyrins. Of course the rates of my child are high

but

> just wanted to know how high compared to other children.

>

> many thanks

>

[Guest guest]

Apparently, according to Dr. R, porhyrin levels can be falsely high if

the creatinine level is less than 1000mg/l; however, if it within that

range (700-1300) he generally thinks the outcome is pretty accurate.

The paper doesn't give exact numbers, only generally states that the

higher the numbers, the more likely the autism is severe. Highest

numbers are often autism plus seizures. This may help though: " When

compared to the control group, children with autism had amean increase

of 2.6 fold in coproporphyrin " So, if that number you've been given as

mean average is actually pretty close to the control group number Dr. R

is talking about in the study, your child is very high it would seem.

I can't remember, are you chelating? And would you mind telling us

when you took the sample (in relation to chelation too, if you are).

Thanks :-)

Anita

>

> Hi, i just got the urinary porphyrins test results back from France.

>

> Anyone here know much about these?

>

> My child has a level of 3393/(nmol/gcr) of coproporphyrins I & III and

> The mean average on the test is stated as between 100 & 200 nmol/gcr.

>

> anyone help me here? looked at the files section of this site where a

> file is about porphyrins. Of course the rates of my child are high

but

> just wanted to know how high compared to other children.

>

> many thanks

>

[Guest guest]

I just remembered there is also a database on CK2 tracking results,

severity of spectrum disorders, etc. If I remember correctly, there

appeared to almost be an inverse correlation, i.e. higher functioning

kids showing more mercury/lead toxicity per the test than lower

functioning kids. Not sure whether or how this was ever

resolved/explained.

Anne

> >

> > Hi, i just got the urinary porphyrins test results back from

France.

> >

> > Anyone here know much about these?

> >

> > My child has a level of 3393/(nmol/gcr) of coproporphyrins I & III

and

> > The mean average on the test is stated as between 100 & 200

nmol/gcr.

> >

> > anyone help me here? looked at the files section of this site

where a

> > file is about porphyrins. Of course the rates of my child are

high

> but

> > just wanted to know how high compared to other children.

> >

> > many thanks

> >

>

[Guest guest]

Hi Anne,

I wonder how many kids were being taken into account there, and when

they were tested (in terms of chelation, etc). What I've read is

that the higher the coproporphyrin levels the more severe the

child. The highest levels were ASD kids with seizures. But I think

I also read that the two very highest levels of kids tested were two

Rett syndrome girls, which speaks volumes to me.

Another thing I read was that the asperger kids had the same results

as the control kids.

Anita

>

> I just remembered there is also a database on CK2 tracking results,

> severity of spectrum disorders, etc. If I remember correctly,

there

> appeared to almost be an inverse correlation, i.e. higher

functioning

> kids showing more mercury/lead toxicity per the test than lower

> functioning kids. Not sure whether or how this was ever

> resolved/explained.

>

>