Re: Porphyrin test results - help! and other issues

[Guest guest]

Irene. I am hoping that someone else will take a look at this also, but

my untutored understanding is that a test is positive if there is an

elevation (and it should be drastic) in one of the porphyrins. This is

what Andy says:

" People with mercury poisoning will usually show elevation of

coproporphyrins

and sometimes uropoprhyrin. The elevation is usually not a subtle

effect 2 or

3 times the upper normal limit being

common.

" Things other than mercury that elevate liver porphryins include

poisoning with

lead, arsenic, etc., liver disease like hepatitis or sometimes

mononucleosis,

adverse reactions to certain drugs, and rare genetic conditions. "

(I believe this was in the files section, but I don't have a note in my

personal database of Andy's info, so I'm not certain. I can give you

the more extended info that I have, if it would be relevant.)

From what I can see from this test, none of these are elevated. So it

<<appears>> to me that this is a negative test. This also appears to be

what they are saying in the interpretation section, at least the part

you have quoted. Don't take my word for it - as I said, this is an

untutored interpretation. If I am right, please remember that these

tests are very sensitive and are _often_ falsely negative.

Dave.

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

Posted by: " Irene Wolf " iflow97@... iflow97

Date: Fri May 9, 2008 8:57 am ((PDT))

Hi All.

My son had a urine porphyrin test done several months ago at the

direction of our former DAN doc. (a doctor's data hair test is in the

works, will post the results as soon as I have them) The lab that did it

was Metametrix, in Georgia. Have heard different things about the

reliablility of different labs, french vs. domestic, don't know what to

think. I know that we collected the urine overnight, and that the

samples were frozen, and had some type of preservative or something in

the tubes used. We had to gently mix/shake same at the time of

collection. The results were as follows, please help with interpretation:

-----

Porphyrin Pathway Intermediates: 95 percent Reference Interval

Uroporphyrin I & III 17.7 less than = 28.2

Heptacarboxyporphyrin 6.6 H less than = 7.0

Hexacarboxyporphyrin 1.6 H less than = 1.4

Pentacarboxyporphyrin 3.8 H less than = 5.2

Precoproporphyrin 1.9 less than = 5.8

(there is a notation that this is atypical porphyrin consistent with

precoproporphyrin reported in the literature. Precoproporphyrin is

reported as a ratio of peak area to internal standard peak area in units

of response/g creatinine)

Coproporphyrin I 48 H less than = 49

Coproporphyrin III 223 H less than = 234

Calculated Values:

Total Porphyrins 301 H less than = 297

Precopro/Uro I & III .1 less than = 1.0

Copro I/Copro III .2 less than = 0.6

Creatinine 35 mg/dl less than = 0.6

The following comments were made as to abnormalities found in the report:

" Elevations of either or both of the compounds Heptacarboxyporphyrin and

Hexacarboxyporphyrin is a pattern consistent with toxic effects of

arsenic or certain organotoxins. Such elevations are more specifically

due to such toxin exposure if Uroporphyrin I & III is not elevated.

The further arsenic toxic effect sign of Coproporphyrin I/III ratio

elevation is not found.

Elevation of 2 of the compounds of Pentacarboxyporphyrin,

Precoproporphyrin and Coproporphyrin III is associated with the toxic

effects of mercury The confirmatory elevation of the

Precoproporphyrin/Uroporphyrin I & III ratio is not found. This may be

due to independent factors raising Uroporphyrin I & III levels.

Elevation of Coproporphyrin III may also be associated with the toxic

effects of lead, especially if no other porphyrin intermediates are

elevated. Strong Coproporphyrin III elevation is also found in some

genetic porphyrias. "

[Guest guest]

Posted by: " Irene Wolf " iflow97@... iflow97

Date: Fri May 9, 2008 8:57 am ((PDT))

>I have to bring up one question again about the sulfur issue. As I

explained elsewhere, my son has allergies to eggs and garlic, which are

2 sulfur foods I have eliminated, but due to the limited nature of his

diet, the only high sulfur foods I can see are broccoli and peas. These

are two of his favorites. If I give or don't give these foods, I notice

no changes in him or his behavior. If the plasma cysteine test is no

good anymore, what can I do? I notice that his multi vitamin from

brainchild has NAC in it, which is sulfur containing isn't it? He does

well with the multi, can I infer from any of this that he is low in

sulfur? What else can I do to figure this out?

Don't know that you can do anything, though perhaps others might have

some creative ideas. He's eating some sulfur, so unless I see the NAC

obviously helping, I would probably avoid that. Otherwise, I'd try to

figure out is he's mercury toxic or not (we don't know yet) and if so

I'd go ahead and chelate. If any more problems show up, they can be

dealt with as they do.

>As to DMSA and ALA, can one be given first for a few rounds, and then

the other added later, in conjunction with or alone after DMSA and still

be effective? Also, can something like NDF be given with these

chelators, as the brainchild protocol for chelation suggests. I was

just curious to hear what Andy and others think about this, only because

I have heard anecdotally, that some parents have done this with success.

Yes, start out with DMSA or ALA, do them separately to see how he

responds. You can combine them later.

NDF is just cilantro. If you look in the archives, you will see that

there have been a large number of negative reactions to cilantro.

>As to supplements: I read on this and other groups about multiple

supplements parents give there kids before and during chelation. I give

my son a good multi vitamin and mineral complex, a high potency

probiotic, enzymes, additional calcium, magnesium, vitamin c, and zinc

broken up during the day, cod liver oil, an herbal tincture that

supports liver function similar to liver life, a product called cell

food with amino acids and trace minerals for oxygenation, and then yeast

fighting enzymes, and various anti fungals in conjunction with a gfcf

and low sugar diet. Is there anything glaring I am missing?

Vitamin E is important. I don't know if the CLO has any decent levels

of vitamin A in it, but if not you might consider it.

>Right now, he is doing the best that he ever has, good eye contact,

good eating habits, better bowel movements, improved cognition, emerging

language and social skills, although language and social skills are

still deficient and probably will only be resolved ultimately with

chelation. I may do some B12 supplementation. I read about parents

giving l carnitine, vitamin E, biotin, coenzyme Q10, primal defence,

colostrum, the list goes on and on. I think sometimes enough with the

supplements, isn't it time to get on with chelation and get to the route

of the problem? Or am I short changing my kid in the short run and

these things could help further? Your in put would be appreciated.

Irene, I hope you are right, but as far as I can tell, we still don't

have any real evidence that he's toxic. Let's wait for that DDI hair

test before drawing any conclusions, ok?

>Thanks Irene

Dave.

[Guest guest]

There was a question from someone as to my son's age for purposes of

interpreting the

porphyrin results. He is currently age 3, was 2 1/2 at the time of the test.

I read the text of the test that said he was negative as to mercury. What could

cause a

false negative as to mercury in a porphyrin test, other than the obvious that my

son is not

mercury toxic? Would it be advisable to redo the test from the French lab? Is

Metametrix a

reliable lab? We are redoing the hair test with doctors data, so I was not sure

if we should

as to the porphyrin test as well.

As to sulfur, I guess there really is no way to conclusively test for sulfur

levels with him. I

can either avoid sulfur containing supplements or give a trial amount of them.

He does

get NAC in his multi with no negative consequences. Also when I give him the

sulfur

containing veggies, he seems to do very well with them, no behavioral or other

issues.

As to other supplements to take prior to chelation, my son does get vitamin E in

his multi

and in the CLO. I know that CLO has vitamin A in it, and that what I give him

is well in

excess of the rda, but by no means a therapeutic dose. I was just worried about

the

potential negative side effects of too much e or a vitamins as they are fat

soluble.

Thanks. Irene

>

> Irene. I am hoping that someone else will take a look at this also, but

> my untutored understanding is that a test is positive if there is an

> elevation (and it should be drastic) in one of the porphyrins. This is

> what Andy says:

>

> " People with mercury poisoning will usually show elevation of

> coproporphyrins

> and sometimes uropoprhyrin. The elevation is usually not a subtle

> effect 2 or

> 3 times the upper normal limit being

> common.

>

>

> " Things other than mercury that elevate liver porphryins include

> poisoning with

> lead, arsenic, etc., liver disease like hepatitis or sometimes

> mononucleosis,

> adverse reactions to certain drugs, and rare genetic conditions. "

>

> (I believe this was in the files section, but I don't have a note in my

> personal database of Andy's info, so I'm not certain. I can give you

> the more extended info that I have, if it would be relevant.)

>

> From what I can see from this test, none of these are elevated. So it

> <<appears>> to me that this is a negative test. This also appears to be

> what they are saying in the interpretation section, at least the part

> you have quoted. Don't take my word for it - as I said, this is an

> untutored interpretation. If I am right, please remember that these

> tests are very sensitive and are _often_ falsely negative.

>

> Dave.

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

> Posted by: " Irene Wolf " iflow97@... iflow97

> Date: Fri May 9, 2008 8:57 am ((PDT))

>

> Hi All.

>

> My son had a urine porphyrin test done several months ago at the

> direction of our former DAN doc. (a doctor's data hair test is in the

> works, will post the results as soon as I have them) The lab that did it

> was Metametrix, in Georgia. Have heard different things about the

> reliablility of different labs, french vs. domestic, don't know what to

> think. I know that we collected the urine overnight, and that the

> samples were frozen, and had some type of preservative or something in

> the tubes used. We had to gently mix/shake same at the time of

> collection. The results were as follows, please help with interpretation:

>

> -----

>

> Porphyrin Pathway Intermediates: 95 percent Reference Interval

>

> Uroporphyrin I & III 17.7 less than = 28.2

>

> Heptacarboxyporphyrin 6.6 H less than = 7.0

>

> Hexacarboxyporphyrin 1.6 H less than = 1.4

>

> Pentacarboxyporphyrin 3.8 H less than = 5.2

>

> Precoproporphyrin 1.9 less than = 5.8

>

> (there is a notation that this is atypical porphyrin consistent with

> precoproporphyrin reported in the literature. Precoproporphyrin is

> reported as a ratio of peak area to internal standard peak area in units

> of response/g creatinine)

>

> Coproporphyrin I 48 H less than = 49

>

> Coproporphyrin III 223 H less than = 234

>

>

> Calculated Values:

>

> Total Porphyrins 301 H less than = 297

>

> Precopro/Uro I & III .1 less than = 1.0

>

> Copro I/Copro III .2 less than = 0.6

>

> Creatinine 35 mg/dl less than = 0.6

>

>

> The following comments were made as to abnormalities found in the report:

>

> " Elevations of either or both of the compounds Heptacarboxyporphyrin and

> Hexacarboxyporphyrin is a pattern consistent with toxic effects of

> arsenic or certain organotoxins. Such elevations are more specifically

> due to such toxin exposure if Uroporphyrin I & III is not elevated.

>

> The further arsenic toxic effect sign of Coproporphyrin I/III ratio

> elevation is not found.

>

> Elevation of 2 of the compounds of Pentacarboxyporphyrin,

> Precoproporphyrin and Coproporphyrin III is associated with the toxic

> effects of mercury The confirmatory elevation of the

> Precoproporphyrin/Uroporphyrin I & III ratio is not found. This may be

> due to independent factors raising Uroporphyrin I & III levels.

>

> Elevation of Coproporphyrin III may also be associated with the toxic

> effects of lead, especially if no other porphyrin intermediates are

> elevated. Strong Coproporphyrin III elevation is also found in some

> genetic porphyrias. "

>

[Guest guest]

Posted by: " iflow97 " iflow97@... iflow97

Date: Sat May 10, 2008 12:46 pm ((PDT))

>There was a question from someone as to my son's age for purposes of

interpreting the

porphyrin results. He is currently age 3, was 2 1/2 at the time of the test.

>I read the text of the test that said he was negative as to mercury. What

could cause a

false negative as to mercury in a porphyrin test, other than the obvious that my

son is not

mercury toxic?

The test is very delicate. Light or too much agitation of the sample, can

destroy the very thing you are trying to test for. A couple of years ago, the

false negative rate was something like 2/3. I don't know if procedures have

improved since then.

Anyone know?

>Would it be advisable to redo the test from the French lab? Is Metametrix a

reliable lab? We are redoing the hair test with doctors data, so I was not sure

if we should

as to the porphyrin test as well.

You really don't need this test. Just bring the hair test.

[...]

>As to other supplements to take prior to chelation, my son does get vitamin E

in his multi

and in the CLO. I know that CLO has vitamin A in it, and that what I give him

is well in

excess of the rda, but by no means a therapeutic dose. I was just worried about

the

potential negative side effects of too much e or a vitamins as they are fat

soluble.

Standard doses of E in experiments are 1600IU/day. According to Andy, cyclists

drink a glass full of the stuff with no negative consequences. Again, according

to Andy, vitamin A is fine at 1000IU/lb per day.

>Thanks. Irene

Dave.