Re: Porphyrin test results and review

[Guest guest]

In frequent-dose-chelation snorklepig wrote:

I've done about 100 days of chelation now with 12.5 mg ALA and 12.5

DMSA mostly - after trying a few variations without success. Around

50 days in I did a porphyrin test and repeated it 50 days later.

The results show a big drop in precoproporphyrin, which is a specific

marker of mercury toxicity, i.e. nothing else causes it. On the

first test it was 14 nmol/gCr against a reference of 5-9. I guess

the reference is a normal average, as ideal would presumably be zero.

On the second it had dropped to 7, right in the middle of the normal

zone. So the test seems to say I should be OK now.

--------I agree with you that idealy, it should be zero. Personally, having a

test score of 7, wouldn't make me feel ok. I would think you would want it

below the reference range, and why the ref. range doesn't go down to zero,

doesn't make any sense to me either. But, I am no expert on these

tests.---------Jackie

I expected chelation to take longer. I still get a marked reaction

to chelation which increases gradually through rounds, mostly poor

concentration, poor memory, and some physical symptoms, none too

drastic, but I now limit rounds to 4 days as this keeps side effects

manageable, and leave about 10 days in between, which as it happens

seems to be about the time it takes for me to get back to " normal "

again. " Normal " does seem better than it used to be, but some way

short of good health. I tried increasing to 18 mg ALA but found

this too much and went back to 12.5. All of this seems to suggest

I have a long way to go, and that chelation is drawing out mercury

hidden in the brain and causing some temporary trouble on its way

out. But another view would be why continue when it seems to mess

me up, if the tests show little toxic effect from mercury?

----------Personally, I would chelate based on symptoms, not on test results.

I think Andy has said that test results, like hair tests, normalize, far before

chelation is done. And he has said that you should chelate for 6 months more

after you feel fine or normal, or to take a break when you think you might be

done, then try another round after a number of months, and if you have side

effects, then you're not done. I believe I have also heard him say that that is

one of the biggest mistakes people make, is quitting too soon. So if I were

you, I would continue chelating, especially since you're still having symptoms.

And personally, I'll chelate till the cows come home, if I have

to!-------------Jackie

I've been lucky in a way in that I have my own business - I would

have been sacked from any job years ago - but that business has

certainly suffered from my CFS and I really need to give it my best

at the moment if it is to carry on supporting me as I recover.

------------Then stick with a dose that you can manage and be as functional as

possible, and don't be in a hurry to increase dosages. You will probably never

get well, if you stop chelating now. JMO--------Jackie

Any comments?

----------May I ask where you're from, since you did porphyrin

testing?----Jackie

Guy

[Guest guest]

In frequent-dose-chelation snorklepig wrote:

I've done about 100 days of chelation now with 12.5 mg ALA and 12.5

DMSA mostly - after trying a few variations without success. Around

50 days in I did a porphyrin test and repeated it 50 days later.

The results show a big drop in precoproporphyrin, which is a specific

marker of mercury toxicity, i.e. nothing else causes it. On the

first test it was 14 nmol/gCr against a reference of 5-9. I guess

the reference is a normal average, as ideal would presumably be zero.

On the second it had dropped to 7, right in the middle of the normal

zone. So the test seems to say I should be OK now.

--------I agree with you that idealy, it should be zero. Personally, having a

test score of 7, wouldn't make me feel ok. I would think you would want it

below the reference range, and why the ref. range doesn't go down to zero,

doesn't make any sense to me either. But, I am no expert on these

tests.---------Jackie

I expected chelation to take longer. I still get a marked reaction

to chelation which increases gradually through rounds, mostly poor

concentration, poor memory, and some physical symptoms, none too

drastic, but I now limit rounds to 4 days as this keeps side effects

manageable, and leave about 10 days in between, which as it happens

seems to be about the time it takes for me to get back to " normal "

again. " Normal " does seem better than it used to be, but some way

short of good health. I tried increasing to 18 mg ALA but found

this too much and went back to 12.5. All of this seems to suggest

I have a long way to go, and that chelation is drawing out mercury

hidden in the brain and causing some temporary trouble on its way

out. But another view would be why continue when it seems to mess

me up, if the tests show little toxic effect from mercury?

----------Personally, I would chelate based on symptoms, not on test results.

I think Andy has said that test results, like hair tests, normalize, far before

chelation is done. And he has said that you should chelate for 6 months more

after you feel fine or normal, or to take a break when you think you might be

done, then try another round after a number of months, and if you have side

effects, then you're not done. I believe I have also heard him say that that is

one of the biggest mistakes people make, is quitting too soon. So if I were

you, I would continue chelating, especially since you're still having symptoms.

And personally, I'll chelate till the cows come home, if I have

to!-------------Jackie

I've been lucky in a way in that I have my own business - I would

have been sacked from any job years ago - but that business has

certainly suffered from my CFS and I really need to give it my best

at the moment if it is to carry on supporting me as I recover.

------------Then stick with a dose that you can manage and be as functional as

possible, and don't be in a hurry to increase dosages. You will probably never

get well, if you stop chelating now. JMO--------Jackie

Any comments?

----------May I ask where you're from, since you did porphyrin

testing?----Jackie

Guy

[Guest guest]

I don't think the porphyrin test will show if you have mercury in

the brain. You've reduced your body level, but not the brain or you

would feel better. Keep chelating until you feel fine and then

continue for a few months after that. If you feel badly while you

chelate or between doses, you are either using too high of a dose

for you, or you need to do more liver support. I like AdvaClear for

liver support only on chelation days and lipoceutical glutathione on

chelation days or off as well.

Trudeau, M.T.,D.C.

>

> I've done about 100 days of chelation now with 12.5 mg ALA and

12.5

> DMSA mostly - after trying a few variations without success.

Around

> 50 days in I did a porphyrin test and repeated it 50 days later.

> The results show a big drop in precoproporphyrin, which is a

specific

> marker of mercury toxicity, i.e. nothing else causes it. On the

> first test it was 14 nmol/gCr against a reference of 5-9. I

guess

> the reference is a normal average, as ideal would presumably be

zero.

> On the second it had dropped to 7, right in the middle of the

normal

> zone. So the test seems to say I should be OK now.

>

> I expected chelation to take longer. I still get a marked

reaction

> to chelation which increases gradually through rounds, mostly poor

> concentration, poor memory, and some physical symptoms, none too

> drastic, but I now limit rounds to 4 days as this keeps side

effects

> manageable, and leave about 10 days in between, which as it

happens

> seems to be about the time it takes for me to get back to " normal "

> again. " Normal " does seem better than it used to be, but some

way

> short of good health. I tried increasing to 18 mg ALA but found

> this too much and went back to 12.5. All of this seems to

suggest

> I have a long way to go, and that chelation is drawing out mercury

> hidden in the brain and causing some temporary trouble on its way

> out. But another view would be why continue when it seems to

mess

> me up, if the tests show little toxic effect from mercury?

>

> I've been lucky in a way in that I have my own business - I would

> have been sacked from any job years ago - but that business has

> certainly suffered from my CFS and I really need to give it my

best

> at the moment if it is to carry on supporting me as I recover.

>

> Any comments?

>

> Guy

>

[Guest guest]

Thanks for your comments Jackie, that's pretty much my conclusion too.

I live in England and get the Porphyrin test done in France at labbio

(www.labbio.net). It's very easy and cheap, you just send a urine

sample by post and they e-mail the result, no need to get physician

referral, and you can do it from anywhere really.

> --------I agree with you that idealy, it should be zero.

Personally, having a test score of 7, wouldn't make me feel ok. I

would think you would want it below the reference range, and why the

ref. range doesn't go down to zero, doesn't make any sense to me

either. But, I am no expert on these tests.---------Jackie

>

>

> ----------Personally, I would chelate based on symptoms, not on

test results. I think Andy has said that test results, like hair

tests, normalize, far before chelation is done. And he has said that

you should chelate for 6 months more after you feel fine or normal,

or to take a break when you think you might be done, then try another

round after a number of months, and if you have side effects, then

you're not done. I believe I have also heard him say that that is

one of the biggest mistakes people make, is quitting too soon. So if

I were you, I would continue chelating, especially since you're still

having symptoms. And personally, I'll chelate till the cows come

home, if I have to!-------------Jackie

>

>> ------------Then stick with a dose that you can manage and be as

functional as possible, and don't be in a hurry to increase dosages.

You will probably never get well, if you stop chelating now. JMO-----

---Jackie

>

>

> ----------May I ask where you're from, since you did porphyrin

testing?----Jackie

>

>

>

> Guy

>

>

>

>

>

>

[Guest guest]

Thanks for your comments Jackie, that's pretty much my conclusion too.

I live in England and get the Porphyrin test done in France at labbio

(www.labbio.net). It's very easy and cheap, you just send a urine

sample by post and they e-mail the result, no need to get physician

referral, and you can do it from anywhere really.

> --------I agree with you that idealy, it should be zero.

Personally, having a test score of 7, wouldn't make me feel ok. I

would think you would want it below the reference range, and why the

ref. range doesn't go down to zero, doesn't make any sense to me

either. But, I am no expert on these tests.---------Jackie

>

>

> ----------Personally, I would chelate based on symptoms, not on

test results. I think Andy has said that test results, like hair

tests, normalize, far before chelation is done. And he has said that

you should chelate for 6 months more after you feel fine or normal,

or to take a break when you think you might be done, then try another

round after a number of months, and if you have side effects, then

you're not done. I believe I have also heard him say that that is

one of the biggest mistakes people make, is quitting too soon. So if

I were you, I would continue chelating, especially since you're still

having symptoms. And personally, I'll chelate till the cows come

home, if I have to!-------------Jackie

>

>> ------------Then stick with a dose that you can manage and be as

functional as possible, and don't be in a hurry to increase dosages.

You will probably never get well, if you stop chelating now. JMO-----

---Jackie

>

>

> ----------May I ask where you're from, since you did porphyrin

testing?----Jackie

>

>

>

> Guy

>

>

>

>

>

>

[Guest guest]

Just a reminder, so as not to confuse new members, as far as I am

aware lipoceutical glutathione is not considered part of protocol in

the frequent dose chelation group.

Thanks

J

>

> I don't think the porphyrin test will show if you have mercury in

> the brain. You've reduced your body level, but not the brain or you

> would feel better. Keep chelating until you feel fine and then

> continue for a few months after that. If you feel badly while you

> chelate or between doses, you are either using too high of a dose

> for you, or you need to do more liver support. I like AdvaClear for

> liver support only on chelation days and lipoceutical glutathione on

> chelation days or off as well.

>

> Trudeau, M.T.,D.C.

>

>

>

[Guest guest]

Just a reminder, so as not to confuse new members, as far as I am

aware lipoceutical glutathione is not considered part of protocol in

the frequent dose chelation group.

Thanks

J

>

> I don't think the porphyrin test will show if you have mercury in

> the brain. You've reduced your body level, but not the brain or you

> would feel better. Keep chelating until you feel fine and then

> continue for a few months after that. If you feel badly while you

> chelate or between doses, you are either using too high of a dose

> for you, or you need to do more liver support. I like AdvaClear for

> liver support only on chelation days and lipoceutical glutathione on

> chelation days or off as well.

>

> Trudeau, M.T.,D.C.

>

>

>

[Guest guest]

In frequent-dose-chelation snorklepig wrote:

Thanks for your comments Jackie, that's pretty much my conclusion too.

I live in England and get the Porphyrin test done in France at labbio

(www.labbio.net). It's very easy and cheap, you just send a urine

sample by post and they e-mail the result, no need to get physician

referral, and you can do it from anywhere really.

-----------Thanks for the info, I figured you were probably in Europe, since

you had this test done. And I think I've heard that this lab in France is the

best one for doing this test. It is in the Links section of our group also. I

haven't been reading over at A-M lately, but I believe it is the recommended lab

there too.

Andy has said that this test is very sensitive to improper handling, giving

inaccurate results, which I believe happened to me here in the states. I

actually got my doctor to order the test like three years ago when I still had

amalgams in. I was rather *green* at this whole process yet, and hadn't found

these groups yet, so didn't know exactly what to ask and do. And I remember the

person in the lab having to look up this test, because she wasn't familiar with

it, so I question the validity of the results and the handling of my sample, and

even the lab were it was done. And, it did not include the precoproporphyrins,

which like you said is the best marker of mercury poisoning, so I think my test

here was rather useless. And then a hair test (met 2 counting rules, almost 3)

and my reaction to chelators has confirmed toxicity for me, so I haven't even

considered doing another porphyrins test. If I had oodles and oodles of money,

it would be interesting to do more of this testing, just to see what the results

were. I think comparing this test to a hair test over time would be

interesting, to see if they follow suit. Keep us informed, if you do another

test in the future. Thanks---------Jackie

>

> ----------May I ask where you're from, since you did porphyrin

testing?----Jackie

>

>

>

> Guy

>

>

[Guest guest]

In frequent-dose-chelation snorklepig wrote:

Thanks for your comments Jackie, that's pretty much my conclusion too.

I live in England and get the Porphyrin test done in France at labbio

(www.labbio.net). It's very easy and cheap, you just send a urine

sample by post and they e-mail the result, no need to get physician

referral, and you can do it from anywhere really.

-----------Thanks for the info, I figured you were probably in Europe, since

you had this test done. And I think I've heard that this lab in France is the

best one for doing this test. It is in the Links section of our group also. I

haven't been reading over at A-M lately, but I believe it is the recommended lab

there too.

Andy has said that this test is very sensitive to improper handling, giving

inaccurate results, which I believe happened to me here in the states. I

actually got my doctor to order the test like three years ago when I still had

amalgams in. I was rather *green* at this whole process yet, and hadn't found

these groups yet, so didn't know exactly what to ask and do. And I remember the

person in the lab having to look up this test, because she wasn't familiar with

it, so I question the validity of the results and the handling of my sample, and

even the lab were it was done. And, it did not include the precoproporphyrins,

which like you said is the best marker of mercury poisoning, so I think my test

here was rather useless. And then a hair test (met 2 counting rules, almost 3)

and my reaction to chelators has confirmed toxicity for me, so I haven't even

considered doing another porphyrins test. If I had oodles and oodles of money,

it would be interesting to do more of this testing, just to see what the results

were. I think comparing this test to a hair test over time would be

interesting, to see if they follow suit. Keep us informed, if you do another

test in the future. Thanks---------Jackie

>

> ----------May I ask where you're from, since you did porphyrin

testing?----Jackie

>

>

>

> Guy

>

>