Re: OT: Please offer your opinion on the ideal book for parents (porphyrins)

[Guest guest]

*Biomarkers of environmental toxicity and susceptibility in autism.*

Geier DA, Kern JK, Garver CR, JB, Audhya T, Nataf R, Geier MR.

Institute of Chronic Illnesses, Inc., Silver Spring, land, USA;

CoMeD, Inc., Silver Spring, land, USA.

Autism spectrum disorders (ASDs) may result from a combination of

genetic/biochemical susceptibilities in the form of a reduced ability to

excrete mercury and/or increased environmental exposure at key

developmental times. Urinary porphyrins and transsulfuration metabolites

in participants diagnosed with an ASD were examined. A prospective,

blinded study was undertaken to evaluate a cohort of 28 participants

with an ASD diagnosis for Childhood Autism Rating Scale (CARS) scores,

urinary porphyrins, and transsulfuration metabolites. Testing was

conducted using Vitamin Diagnostics, Inc. (CLIA-approved) and

Laboratoire Philippe Auguste (ISO-approved). Participants with severe

ASDs had significantly increased mercury intoxication-associated urinary

porphyrins (pentacarboxyporphyrin, precoproporphyrin, and

coproporphyrin) in comparison to participants with mild ASDs, whereas

other urinary porphyrins were similar in both groups. Significantly

decreased plasma levels of reduced glutathione (GSH), cysteine, and

sulfate were observed among study participants relative to controls. In

contrast, study participants had significantly increased plasma oxidized

glutathione (GSSG) relative to controls. Mercury intoxication-associated

urinary porphyrins were significantly correlated with increasing CARS

scores and GSSG levels, whereas other urinary porphyrins did not show

these relationships. The urinary porphyrin and CARS score correlations

observed among study participants suggest that mercury intoxication is

significantly associated with autistic symptoms. The transsulfuration

abnormalities observed among study participants indicate that mercury

intoxication was associated with increased oxidative stress and

decreased detoxification capacity.

*An investigation of porphyrinuria in Australian children with autism.*

Austin DW, Shandley K.

Swinburne Autism Bio-Research Initiative (SABRI), Faculty of Life and

Social Sciences, Swinburne University of Technology, Melbourne,

Australia. daustin@...

Two recent studies, from France (Nataf et al., 2006) and the United

States (Geier & Geier, 2007), identified atypical urinary porphyrin

profiles in children with an autism spectrum disorder (ASD). These

profiles serve as an indirect measure of environmental toxicity

generally, and mercury (Hg) toxicity specifically, with the latter being

a variable proposed as a causal mechanism of ASD (Bernard et al., 2001;

Mutter et al., 2005). To examine whether this phenomenon occurred in a

sample of Australian children with ASD, an analysis of urinary porphyrin

profiles was conducted. A consistent trend in abnormal porphyrin levels

was evidenced when data was compared with those previously reported in

the literature. The results are suggestive of environmental toxic

exposure impairing heme synthesis. Three independent studies from three

continents have now demonstrated that porphyrinuria is concomitant with

ASD, and that Hg may be a likely xenobiotic to produce porphyrin

profiles of this nature.

*A prospective study of mercury toxicity biomarkers in autistic spectrum

disorders.*

Geier DA, Geier MR.

Institute of Chronic Illnesses, Silver Spring, land, USA.

Porphyrins are derivatives formed in the heme synthesis pathway and

porphyrins afford a measure of xenobiotic exposure. The steps in the

heme pathway most vulnerable to heavy metal inhibition are uroporphyrin

decarboxylase (UROD) and coproporphyrinogen oxidase (CPOX) reactions.

Mercury toxicity was associated with elevations in urinary

coproporphyrin (cP), pentacarboxyporphyrin (5cxP), and precoproporphyrin

(prcP) (also known as keto-isocoproporphyrin) levels. Two cohorts of

autistic patients in the United States and France had urine porphyrin

levels associated with mercury toxicity. A prospective study of urinary

porphyrin testing at LabCorp (United States) and the Laboratoire

Philippe Auguste (France) involving 71 autism spectrum disorder (ASD)

patients, neurotypical sibling controls, and general population controls

was undertaken. ASD patients had significant elevations in urinary

levels of cP, 5cxP, and prcP relative to controls, and > 50% of ASD

patients had urinary cP levels more than 2 standard deviations above the

mean values for neurotypical sibling controls. Significant reductions in

urinary 5cxP and cP levels were observed in ASD patients following

chelation. A significant correlation was found between urinary

porphyrins measured at LabCorp and those measured at the Laboratoire

Philippe Auguste on individual ASD patients. The established

developmental neurotoxicity attributed to mercury and

biochemical/genomic evidence for mercury susceptibility/toxicity in ASDs

indicates a causal role for mercury. Urinary porphyrin testing is

clinically available, relatively inexpensive, and noninvasive.

Porphyrins need to be routinely measured in ASDs to establish if mercury

toxicity is a causative factor and to evaluate the effectiveness of

chelation therapy.

*

A prospective assessment of porphyrins in autistic disorders: a

potential marker for heavy metal exposure.*

Geier DA, Geier MR.

The Institute for Chronic Illnesses, Silver Spring, MD 20905, USA.

Autism was recently associated with a urinary porphyrin pattern

indicative of mercury toxicity in a large cohort of French children. The

IRB of the Institute for Chronic Illnesses approved the present study. A

total of 37 consecutive American patients (> or = 7 years-old) with

autism spectrum disorders (ASDs) (Diagnostic and Statistical Manual of

Mental Disorders, Fourth Edition-DSM IV), born from 1983-1998, that

presented to the Genetic Centers of America for outpatient genetic

evaluations were prospectively examined for urinary prophryin levels

(LabCorp, Inc.) from June 2005-June 2006. Imaging and laboratory testing

were conducted on each patient to rule-out other causal factors for

their ASDs. As controls, age-, sex-, and race-matched neurotypical ASD

siblings were examined. An apparent dose-response effect was observed

between autism severity and increased urinary coproporphyrins. Patients

with non-chelated autism (2.25-fold, 83% had levels > 2 SD above the

control mean) and non-chelated ASDs (2-fold, 58% had levels > 2 SD above

the control mean), but not patients with non-chelated pervasive

developmental delay-not otherwise specified (PDD-NOS) or Asperger's

disorder (1.4-fold, 46% had levels > 2 SD above the control mean), had

significantly increased median coproporphyrin levels versus controls. A

significant increase (1.7-fold) in median coproporphyrin levels was

observed among non-chelated ASD patients versus chelated ASD patients.

Porphyrins should be routinely clinically measured in ASDs, and

potential ASD treatments should consider monitoring porphyrin levels.

Additional research should be conducted to evaluate the potential role

for mercury exposure in some ASDs.

*

Porphyrinuria in childhood autistic disorder: implications for

environmental toxicity.*

Nataf R, Skorupka C, Amet L, Lam A, Springbett A, Lathe R.

Laboratoire Philippe Auguste, Paris, France.

To address a possible environmental contribution to autism, we carried

out a retrospective study on urinary porphyrin levels, a biomarker of

environmental toxicity, in 269 children with neurodevelopmental and

related disorders referred to a Paris clinic (2002-2004), including 106

with autistic disorder. Urinary porphyrin levels determined by

high-performance liquid chromatography were compared between diagnostic

groups including internal and external control groups. Coproporphyrin

levels were elevated in children with autistic disorder relative to

control groups. Elevation was maintained on normalization for age or to

a control heme pathway metabolite (uroporphyrin) in the same samples.

The elevation was significant (P < 0.001). Porphyrin levels were

unchanged in Asperger's disorder, distinguishing it from autistic

disorder. The atypical molecule precoproporphyrin, a specific indicator

of heavy metal toxicity, was also elevated in autistic disorder (P <

0.001) but not significantly in Asperger's. A subgroup with autistic

disorder was treated with oral dimercaptosuccinic acid (DMSA) with a

view to heavy metal removal. Following DMSA there was a significant (P =

0.002) drop in urinary porphyrin excretion. These data implicate

environmental toxicity in childhood autistic disorder.

http://www.generationrescue.org/pdf/porphyrinuria.pdf

http://www.icdrc.org/documents/Rossignol%20porphyrins%20medical%20veritas%202007\

..pdf

http://mercury-freedrugs.org/docs/PorphyrinsinAutisticDisorders1.pdf

http://www.generationrescue.org/pdf/porphyrinuria.pdf

http://www.safeminds.org/pressroom/pres_releases/060214Natafpresentation.pdf

And moria's site:

http://home.earthlink.net/~moriam/

Alyssa Davi wrote:

>

> Yes, I need this book. I would buy that book, if it were written.

> I am new to all of this and even with a college degree I am struggling

> to understand how to begin safely.

>

> Can anyone give me a link to articles/info. interpreting porphyrins?

> Both my boys are high. Now what does that info. mean?

>

> Can anyone give me the link to Moira (?) someone mentioned?

>

>

> >

> > Listmates,

> >

> > I have the privilege and responsibility of working on a book with

> > Andy. We are writing a book for parents of children who have

> > developmental/ biomedical problems, including but not limited to

> > autism. As a parent of a child with autism and a reader of lists

> > like this one for over three years now, I have an idea about what I

> > would like to see in a book; however, both Andy and I are very

> > interested in hearing what others would like to see in the `ideal'

> > book for parents on the journey of trying to help recover their

> > child's (or children's) health.

> >

> > With that in mind, I am asking for your help. I am interested in the

> > views of parents who have been doing this a very long time, parents

> > who are just starting, and anyone in between. Please, if you have a

> > few moments, take the time to write me offlist to give me your

> > comments.

> >

> > I am interested in people's views on two main areas:

> >

> > Content---what would be essential to include in this sort of book given

> > your circumstances?

> >

> > Organization and presentation- --how should the information be given to

> > you?

> >

> > Anything that you might have to offer will be helpful in our

> > endeavour.

> >

> > With much appreciation,

> > Anita

> >

> >

>

>

[Guest guest]

I doiubt it is worth an entire chapter (and there is some coverage in my book

Amalgam

Illness), but some discussion, and the reference range issue is important since

those are

seldom 'normal ranges.'

Mostly this is the current DAN! fad. Metametrix offered such a test about 10

years ago but

weren't able to start a fad so they discontinued it due to lack fo demand. I

think they've

brought it back again now.

Andy

> >

> > I think for new parents, a section on porhyrins testing and

> > interpretation would be helpful. Because many new parents and doctors

> > want " proof " there is a heavy metals issue. The child's condition is

> > not enough......

> >

> > It would be great if it could cover:

> >

> > When it is useful, when it is NOT useful. Why it is not 100% reliable.

> > What can go wrong between taking the sample and then transporting it to

> > the lab.

> >

> > Some comment on the debate between the US and French labs and the issue

> > of reference ranges.

> >

> > Every doctor I speak to has a different way of interpreting porphyrins

> > tests (personally I think they're not very sure or confident

> > themselves), so there is a LOT of conflicting information in regards to

> > porphyrins test interpretation.

> >

> > Another thing that worries me a lot is I know a few parents who keep

> > relying on tests like porphyrins tests to TELL them when chelation is

> > over. You only need to look at their child to see they have a long way

> > to go, but there is this desperation for some official document to tell

> > them " chelation is finished.... . you can relax " and they seem to lose

> > sight of looking at the actual patient, rather than just test results.

> > I hear of this with some doctors behaviour too.

> >

> > Anyway.... a chapter on porphyrins I think would help a great many

> > parents..... AND doctors.

> >

> >

> >

> > Anita wrote:

> > >

> > > Listmates,

> > >

> > > I have the privilege and responsibility of working on a book with

> > > Andy. We are writing a book for parents of children who have

> > > developmental/ biomedical problems, including but not limited to

> > > autism. As a parent of a child with autism and a reader of lists

> > > like this one for over three years now, I have an idea about what I

> > > would like to see in a book; however, both Andy and I are very

> > > interested in hearing what others would like to see in the `ideal'

> > > book for parents on the journey of trying to help recover their

> > > child's (or children's) health.

> > >

> > > With that in mind, I am asking for your help. I am interested in the

> > > views of parents who have been doing this a very long time, parents

> > > who are just starting, and anyone in between. Please, if you have a

> > > few moments, take the time to write me offlist to give me your

> > > comments.

> > >

> > > I am interested in people's views on two main areas:

> > >

> > > Content---what would be essential to include in this sort of book given

> > > your circumstances?

> > >

> > > Organization and presentation- --how should the information be given to

> > > you?

> > >

> > > Anything that you might have to offer will be helpful in our

> > > endeavour.

> > >

> > > With much appreciation,

> > > Anita

> > >

> > >

> >

> >