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Pyroluria


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I tested for pyroluria through Direct Health Care Access. I had a 20, which fits into the borderline pyroluria as 10-20 from their is considered borderline and above 20 is pyroluria. I'm going to work with my doctor on this next time I see him. How many of you found out that you or your child had borderline pyroluria or pyroluria? Did you find that the treatment for pyroluria lessened the tics?

 

Carolyn

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Pfeiffer says that 10-20 still needs treatment if symptoms exist.

 

For a value of 21, they recommended 300 mg B6 and 25 mg P5P!

 

We didn't do this much, but it varies for everyone.

 

As you know, my son hasn't had tics in 13 months--well before we uncovered the pyroluria. I can't say the direct impact of treatment on him, but with 100 mg B6 and 50 mg P5P, his pyroluria is only 8.5 or so.

 

Your result is not surprising Carolyn--I definitely recommend getting treatment. Direct Access Healthcare will connect your doctor with Pfeiffer and they will recommend a treatment plan.

 

FJ is the only parent I know of directly whose son's tics were 'cured' by the pyroluria treatment. Hopefully you posted this question on Braintalk--maybe more over there have experience with it.

 

I do hope you get your doctor to talk to Pfeiffer (via the pyroluria lab) re the treatment. The biggest thing is that it creates a B6/zinc deficiencies and they are fundamentally important to the nervous system and the immune system. I would love to hear how you do after a week of treatment--the results can be very fast.

 

Please keep us posted!

 

Claire

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Claire,

 

What is P5P? Is that zinc? Why did you decide to do more of the P5P than they recomended for your son? Yep, I posted at Braintalk also.

 

Since pyroluria creates a b6/zinc deficiency and I didn't show up with those deficiencies from the spectracell blood test doesn't it make you wonder how acurate the spectracell blood test is?

 

Carolyn

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This was actually posted by me, I was singed out for some reason.

 

Claire,

 

What is P5P? Is that zinc? Why did you decide to do more of the P5P than they recomended for your son? Yep, I posted at Braintalk also.

 

Since pyroluria creates a b6/zinc deficiency and I didn't show up with those deficiencies from the spectracell blood test doesn't it make you wonder how acurate the spectracell blood test is?

 

Carolyn

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I wondered the same thing about Spectracell. I decided that it must show some but not all deficiencies, or that the pyroluria must be recent. (Although Spectracell did show vitamin deficiencies in zinc/B6 for my husband and me).

 

P5P is the activated form of B6 and is less toxic than B6. This is why I give more P5P and much less B6. My DAN doctor likes P5P better than B6. I also do zinc.

 

Claire

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