porphyrin test results

[Guest guest]

Hi Rhona and Very promising results! Its great to see a series like this. The urinary porphyrin test basically shows the level of mercury etc in the kidneys, which has been shown to be similar to the total body levels in various studies. I guess the question with s results is, have you successfully removed the mercury from the whole body (at least down to normal levels) or just selectively from the kidneys. I understand that levels can go up dramaticlly when ALA is used in the chelation, maybe removing brain mercury (there seem to be different opinions as to whther ALA does cross the BBB). Maybe you should consult with your Dr and try and round of DMPS (or DMSA) with ALA. Mandi is an expert on ALA and I think you do it every 3 hours day and night. Repeating the porphyrin test at the end of the

round would give an indication of what is going on. Are you still pulling stuff from the rest of the body. I guess doing a fecal metals and urine metals test could also be used to see if something is still coming out. Would be very inetersting! You are trail-blazing here! Tina Justbty343341 <chris.cytera@...> wrote: I have just posted our son's three porphyrin test results in the "Test Results" folder. Any help on interpretation would be greatly appreciated.We started on TD-DMPS per the Buttar protocol in July 2005. Since 20 January 2006 we have not used the TD-DMPS much as has had a string of colds and other bugs, so he has mostly been having Humet-R instead. We thought this a very gentle chelator

compared to TD-DMPS but the test result might indicate otherwise.....DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

[Guest guest]

> I have just posted our son's three porphyrin test results in

the " Test

> Results " folder. Any help on interpretation would be greatly

> appreciated.

>

> We started on TD-DMPS per the Buttar protocol in July 2005.

Since

> 20 January 2006 we have not used the TD-DMPS much as has had a

string

> of colds and other bugs, so he has mostly been having Humet-R

instead.

> We thought this a very gentle chelator compared to TD-DMPS but the

test

> result might indicate otherwise.....

>

>

>

>

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

advice. If you need medical advice, please seek it from a suitably

qualified practitioner.

>

>

[Guest guest]

In a message dated 11/04/2006 22:41:18 GMT Daylight Time, loraine.higgins@... writes:

(We have just finished our first round of oral DMSA (Dr Heard). 1st and 2nd day OK 3rd day tired and stimmy.)

>>>Did you give minerals on round? What dose and what frequency and howmuch does your chidl weigh?

Tired and stimmy can happen, Sam used to get very tiored looking at the end on DMSA only and perked up no end when we added ALA.

First round is scarey eh? Well done

Mandi x

[Guest guest]

In a message dated 11/04/2006 22:41:18 GMT Daylight Time, loraine.higgins@... writes:

I note recent discussions on the list have suggested the porphyrins test may be inconclusive, however from the above results I would say my wee one is definately toxic. Would you agree?

>>>Yes I think so. What worries me is it can show a low or negative results for toxic people

Mandi x

[Guest guest]

In a message dated 11/04/2006 23:13:06 GMT Daylight Time, loraine.higgins@... writes:

Annie weighs around 40lb, 2*100mg caps 3x per day. Dr Heard said to stop minerals on on days. I'm still giving Calcium and Magnesium but stopped brainchild and additional zinc and selenium.

>>>FWIW Sam is 90 pounds and gets 25mg every 3 hours along with 50 mg of ALA.

If I stopped the minerals during the round he woudl be white as sheet and lethargic.

Which is how he gets if I try to up the dose although haven't tried this year yet will soon. I give mienrals with chelators there is no reason not too IMHO

Mandi x

[Guest guest]

In a message dated 11/04/2006 23:13:06 GMT Daylight Time, loraine.higgins@... writes:

was soooo nervous, kept putting it off, now glad we've got round 1 out of the way! At what round did you add ALA? - we haven't discussed this yet with Dr Heard. Due to fly down to see him in June for bloods, I can raise it with him then.

>>>We added it on round 5 or 6 not sure without looking at the diary because I wasn't prepared to see him like he was and we were only doing 12.5 per dose then 4 hourly when it was just DMSA,. we do 3 hourly now due to the ALA.

He was suddenly a shiney smiley boy again with pink cheeks on and off round

I will speak to him at my appointmetn about this no minerals business, I think its madness, Dr McC does minerals on round even now

Mandi x

[Guest guest]

In a message dated 11/04/2006 23:17:46 GMT Daylight Time, geirf@... writes:

One of Norways MD arguing for Mercury detox, Dr Heiko Santelman pinpoints that no single test is reliable for evaluating Mercury toxicity,so the discussion here on this list tells the same,and results from those who have been detoxing tells the same, sometimes you find metals, sometimes not,and somtimes you can explain why,and sometimes you cannot.

>>Indeed which is why I don't do output testing and watch my kid instead which is the important thing and much much cheaper too

Mandi x

[Guest guest]

In a message dated 12/04/2006 00:25:47 GMT Daylight Time, loraine.higgins@... writes:

FWIW Dr Heard said it was a waste of time because the DMSA pulls the good as well as the bad. I'm thinking some of the good may still be retained?

>>>Chelators pull what is easy to pick up - the right shape to fit the molecule sort of thing - you can tell I am not a techy LOL. Andy Cutlers stance is that the PROCESS of chelation DEPLETES minerals, it does not CHELATE them to any meaningful level.

Hopefully Anita or will step in to make it make sense. I do personally think withholding minerals during chelation adds to the stress of the process. Most of these kids have deranged minerals trasnport o start with

I think what Dr Heard does is folows the DAN! protocol, which before it was changed wa the same as I am doing. The PDR dosing on which it is based of soemthign scaery like 10mg per kg was intended for acute treatment of Lead toxicity not for dealing with chronically poisoned kids with Hg issues in tandem with the Lead.

Chelation and treating autism in any fashion in the Uk is considered 'out there' I think he is careful to stick largely to the protocol so there is a given basis for what he does. He has Andy Cutlers books and he has read them - I tested him LOL he also understand the counting rules but still advises DAN challenges. I like him a lot and think he is very smart, just like most things, I dont; agree with all he does, as I dont; take everything from Andy Cutker as gospel either.

What makes effective chelation is staying power - being able to keep at it and at it and at it. Having to stop for low minerals and because is drained from the process slows things down. Sam is still diiferent on round, not regressed, not even particularly stimmy, just different, but he isn;t uncomfortabel or overly tired or pale (excpet when we tried oral and TD EDTA).

HTH

Mandi x

[Guest guest]

Annie weighs around 40lb, 2*100mg caps 3x per day. Dr Heard said to

stop minerals on on days. I'm still giving Calcium and Magnesium but

stopped brainchild and additional zinc and selenium.

I was soooo nervous, kept putting it off, now glad we've got round 1

out of the way! At what round did you add ALA? - we haven't

discussed this yet with Dr Heard. Due to fly down to see him in June

for bloods, I can raise it with him then.

Loraine

>

>

> In a message dated 11/04/2006 22:41:18 GMT Daylight Time,

> loraine.higgins@... writes:

>

> (We have just finished our first round of oral DMSA (Dr Heard).

1st

> and 2nd day OK 3rd day tired and stimmy.)

>

>

>

> >>>Did you give minerals on round? What dose and what frequency

and howmuch

> does your chidl weigh?

>

> Tired and stimmy can happen, Sam used to get very tiored looking

at the end

> on DMSA only and perked up no end when we added ALA.

>

> First round is scarey eh? Well done

>

> Mandi x

>

[Guest guest]

One of Norways MD arguing for Mercury detox, Dr Heiko Santelman

pinpoints that no single test is reliable for evaluating Mercury toxicity,

so the discussion here on this list tells the same,

and results from those who have been detoxing tells the same,

sometimes you find metals, sometimes not,

and somtimes you can explain why,

and sometimes you cannot.

Geir Flatabø

Loraine skrev:

>Hi all

>I just received results, as follows:

>

>UP - 19 (Ref range 10 - 30)

>7cxp - 3.7 (Ref range 1.5 - 4)

>6cxp - 1 (Ref range 0.5 - 20)

>5pcp - 8 (Ref range 1.6 - 3)

>preco - 28.6 (Ref range <7)

>cp - 350 (Ref range 40 - 80)

>

>>From the analysis, combined elevated results for preco & cp indicate

>mercury toxic and elevated cp indicates lead.

>

>We done a DMPS challenge (much to my regret): it was inconclusive.

>We also done a hair analysis and fell short of AC's counting rules

>by a a couple of points.

>

>I note recent discussions on the list have suggested the porphyrins

>test may be inconclusive, however from the above results I would say

>my wee one is definately toxic. Would you agree?

>

>(We have just finished our first round of oral DMSA (Dr Heard). 1st

>and 2nd day OK 3rd day tired and stimmy.)

>

>Any feedback appreciated

>Loraine

>

>

>

>

>

>DISCLAIMER

>No information contained in this post is to be construed as medical advice. If

you need medical advice, please seek it from a suitably qualified practitioner.

>

>

[Guest guest]

Do u think this protocol is too harsh on the system? I've been

reading about Andy Cutler's approach but have went along with Dr

Heard's recommendations. As I say Annie was OK apart from day 3,

we'll see how she is tomorrow. I will probably start giving minerals

on the on days as well.

FWIW Dr Heard said it was a waste of time because the DMSA pulls the

good as well as the bad. I'm thinking some of the good may still be

retained?

L

>

>

> In a message dated 11/04/2006 23:13:06 GMT Daylight Time,

> loraine.higgins@... writes:

>

> Annie weighs around 40lb, 2*100mg caps 3x per day. Dr Heard said

to

> stop minerals on on days. I'm still giving Calcium and Magnesium

but

> stopped brainchild and additional zinc and selenium.

>

>

>

> >>>FWIW Sam is 90 pounds and gets 25mg every 3 hours along with

50 mg of

> ALA.

>

> If I stopped the minerals during the round he woudl be white as

sheet and

> lethargic.

>

> Which is how he gets if I try to up the dose although haven't

tried this

> year yet will soon. I give mienrals with chelators there is no

reason not too

> IMHO

>

> Mandi x

>

[Guest guest]

Hi Lorraine

Wow your results are even higher than ours... From what I have bben told the test is only accurate for Mercury toxicity and indicates kidney heavy metal content rather than whole body burden.

HTH

Caroline Traa

x

[Guest guest]

Loraine,

I use DMSA and ALA with my son. I've read Mandi's message and I

think she's explained it very well. I'd like to add just a couple

of things that help me understand this. I don't think that DMSA

chelates any of our essential minerals except some zinc. So, the

process of chelation depletes all minerals and, IMO, does chelate

some zinc.

I've been doing some reading in old Andy posts and he gives an

explanation of chelation that helped me understand why we need to

supp the zinc during chelation. Even at very small doses, like I

use for my son, there are more chelators than things available to be

pulled. AC compared it to a dance, where there are lots of men and

few women. All the women will be asked to dance, no matter their

appearance. They might look like mercury or lead or antimony or

even zinc. The point is, even when all the women are dancing, there

are still plenty of men left. That means, that even though the DMSA

might be chelating some available zinc, there is still plenty of

DMSA left to chelate available mercury, lead, etc. I also believe

that the chelators drop their metals, which means that even though

some zinc will be picked up by the chelators, it can be dropped

again and used by the body. Remember, this is all my

interpretation, but it does make sense to me based on my experience

chelating and my readings (including posts from parents).

If I don't supplement my son with lots of minerals during chelation,

he does not do well. If I don't give him lots of zinc during the

round (1 mg/per pound plus 20 mg, plus zinc sulfate cream twice a

day), he'll grind his teeth to nothing against any flat surface he

can find. Before we started chelation, my son had NO zinc, per his

hair test. We've been chelating pretty consistantly, with good

pulls, supping minerals during rounds, and he now has reference

range zinc, per hair testing.

I do give minerals supps away from the chelators. That is, I try

not to have the zinc and the chelators in his belly at the same

time. That works for us. Zinc is extremely important for the

immune system, appetite, keeping copper down, and about a million

other things. Whatever method you decide on, it is important to

keep levels high enough.

Also, FWIW, my son is 34 pounds. Today is day 86 of chelation for

us and my son gets 8.5 mg of DMSA and 11.5 mg of ALA every three

hours. At that dosage urine and fecal tests show good pulls. Also,

at that dosage we are able to do long rounds and he is very happy.

Best wishes,

Anita

> >

> >

> > In a message dated 11/04/2006 23:13:06 GMT Daylight Time,

> > loraine.higgins@ writes:

> >

> > Annie weighs around 40lb, 2*100mg caps 3x per day. Dr Heard

said

> to

> > stop minerals on on days. I'm still giving Calcium and

Magnesium

> but

> > stopped brainchild and additional zinc and selenium.

> >

> >

> >

> > >>>FWIW Sam is 90 pounds and gets 25mg every 3 hours along with

> 50 mg of

> > ALA.

> >

> > If I stopped the minerals during the round he woudl be white as

> sheet and

> > lethargic.

> >

> > Which is how he gets if I try to up the dose although haven't

> tried this

> > year yet will soon. I give mienrals with chelators there is no

> reason not too

> > IMHO

> >

> > Mandi x

> >

>

[Guest guest]

In a message dated 12/04/2006 00:25:47 GMT Daylight Time,

loraine.higgins@... writes:

FWIW Dr Heard said it was a waste of time because the DMSA pulls

the good as well as the bad. I'm thinking some of the good may

still be retained?

Chelators pull what is easy to pick up - the right shape to fit the

molecule sort of thing - you can tell I am not a techy LOL. Andy

Cutlers stance is that the PROCESS of chelation DEPLETES minerals,

it does not CHELATE them to any meaningful level.

Hi Mandi/Anita

What you are both saying makes sense. I'm definately going to keep

giving all minerals on on days. Annie was even more tired and

lethargic yesterday even though the round stopped the day before.

I do have Andy Cutlers book but I find it such a hard read - I need

to pick it up again I think.

Thanks

Loraine

[Guest guest]

Hi Lorraine

Wow your results are even higher than ours... From what I have bben

told the test is only accurate for Mercury toxicity and indicates

kidney heavy metalcontent rather than whole body burden.

HTH

Caroline Traa

x

Hi Caroline

Have you started yet? Out of interest do you know what protocol Dr

Usman tends toward.

L

[Guest guest]

Hi Lorraine

No we have not yet started chelating. s bowel is still pretty messed up and we are probably going to be seeing someone about that first. We are seeing Dr U on May 1st and is going to have an IV-EDTA (probably only the one ever!) then I guess we will begin. I imagine she will be pretty DAN protocol.

Luv Caroline

xx

[Guest guest]

In a message dated 14/04/2006 06:42:14 GMT Daylight Time, CarolineTraa@... writes:

I imagine she will be pretty DAN protocol.

>>>Nah - Dr Usman is very patient specific and very flexible, probably the most flexible DAN! I have read about, I have four close buddies who see her

A = TD DMPS Buttar + Biochelate

B = TD DMSA 4 hourly + TTFD

C = TTFD & Homepathics till gut better shape

D = DMSA/ALA Cutler protocol

I like Dr Usman, she has a range of tools rather than a one size fits all protocol. She does IV's too, EDTA and DMPS

Mandi x

[Guest guest]

Whoops Thanks M

Thot you'd chip in. Basically we are so not there yet. I've not even started reading about chelation yet... Shouldnt have tried to answer something I know nothing about. Still trying to get my head round everything else.

And as Mandi said we have found Dr U to be very person specific, kind and lovely.

Good Luck with the wee one, its a scary thought.... but someday... soon

Lotsa Love Caroline

xxx

[Guest guest]

I just received the test results from my son's urinary porphyrin test and was

hoping for a little help with the interpretation of it. I know the lab will

send me something later detailing how to do this, but like most parents, I

really don't want to wait that long. I can't seem to figure out how to post the

email results to this post so I am just going to add what I think must be most

important here and hope that if I am missing something someone will let me know,

so here goes:

Uroporphyrin 14 nmol

Heptacarboxypporphyrin 3.8 nmol

hexacarboxyporphyrin 0.7 nmol

Pentacarboxyporphyrin 26 nmol

Coproporphyrin 294 nmol

pcP/uP PreCOP/Uro RATIO 1.78

(5CP+PCp)/(uP+7cP) RATIO 1.7

pcP/5cP preCOP/5CXP RATIO 4.0

pcP/cP preCOP/COP RATIO 9.1

cP/uP URO/COP RATIO 19.6

I don't know if you need all of these numbers or none of them to give me any

advise, but anything would be welcome. I would be happy to post the whole file

somewhere for anyone to look at if that would help, if someone can give me

instructions on doing so because i am technically challenged that way, but can

do with directions.

Thanks in advance. Betsy