Web Address for Pyroluria test?

[Guest Guest_Jennifer]

Claire,

 

I was wondering if you could post the web-site or phone number of the lab that does the pyroluria testing...can't seem to find it.

 

Thanks,

 

Jennifer

[Claire]

www.pyroluriatesting.com

 

You can give them the doctor's name, but order the test yourself. I tell you, that seems to be quite a 'real' thing for those that test positive. Since this became positive, we now see a zinc deficiency, even with supplementation, so we need to bump up the supplements there from 25 mg to 50 mg. I am glad we retested during a time when the yeast was worse.

 

How are things going with your son these days? (this is Jennifer_M, not the first Jennifer, yes?)

 

Claire

[Guest Guest_Jennifer]

Claire,

 

Thanks for the info. This is the first Jennifer. For some reason I am getting logged on as a guest and not a member....don't know why...we cleaned some files off our computer the other day, don't know if I messed something up.

 

I am so glad that we can do this test on our own...I really want to test our youngest son too, this makes it so much simpler.

 

Jennifer

[Claire]

Hi Jennifer,

 

I know, me too (glad re no doctor signature). We retest every couple of months. That way I can play with the minimum dosage it takes to keep it below 10, vs Pfeiffer's very high recommendations--especially the B6. Good luck with your younger one. Not a bad idea to retest annually or when symptoms show.

 

I still think it odd, given the familial link, that my son had pyroluria and my husband and I didn't, yet my husband and I both had B6/zinc deficiencies. Go figure.

 

Claire

[Guest Guest_Jennifer]

Claire,

 

I know Pfeiffer believes it to be a genetic issue...maybe for many it is, but there could also be the possibility that it may be caused by an environmental insult???

 

Jennifer

[Claire]

I have heard at least one DAN doctor thinks it is a secondary condition.

 

I think we have tendencies, and in one family, the environmental insult might be more likely to result in pyroluria.

 

I don't personally expect it to be a lifelong 'condition' once the other things are in balance, but that could be my optimism coming through.

 

Claire

[Guest Guest_Jennifer]

Claire,

 

If you could, please contact me. I am not able to send you a personal e-mail...I'm still getting logged in as a guest, I e-mailed ACN tech support-hopefully we'll get this straightened out.

 

Jennifer

[Claire]

Pfeiffer doctor on pyroluria:

 

They said to give all the B6/P5P in the morning vs splitting it. They said it can interfere with sleep. For a KP score of 20, they wanted 350 mg B6 and 25 mg P5P!!!

 

They said the Omega 6 supplementation for pyroluria was only for extreme cases of pyroluria >40. Omega 3 was fine.

 

Niacinamide is not needed for pyroluria--I think it was Woody McGinnis who recommended this.

 

Still no Manganese, if any tic syndrome, even with high zinc.

 

Not saying this is gospel at all just their input.

 

Claire

[Heather]

Claire,

 

Do they believe that manganese aggravates tics? I haven't done any research on this so would appreciate hearing what you know about tics and manganese.

 

Heather

[Claire]

Yes, they believe manganese aggravates tics.

 

What I don't know (no time to ask her, don't know if she even knows) is if it is something like copper that is hard to get rid of. vs just stopping taking it. I think, given manganese madness, that it isn't so simple a reversal, but I am not sure.

 

So now I am at a loss how to handle it. The thing is, generalizations are just that. Every child is different. The best thing is to test regularly I guess.

 

Claire