Posted by Maggie1998 on July 3, 2010, at 23:50:34
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by jahxman on June 30, 2010, at 14:42:42
Supplementing Zinc and P5P (a form of B6) for both of my kids is still working very well. In fact, recently we had to take my son off of all supplements to re-test and ALL of his symptoms returned...we couldn't wait to put him back on and even he was begging to be put back on. Thankfully, he is stable again after returning to supplements. Of note, both kids are also on a gluten free, casein (dairy) free diet and were on this at least a year before we found the Pyroluria. The initial gains on the diet were nice but we didn't see big gains until we supplemented with therapeutic doses of zinc and P5P. We did, however, need both the diet and supplements to get the kids stable and functioning relatively normal.
It is very important to continue monitoring zinc levels - keeping in mind that its hard to "test" for optimal levels since zinc is stored in tissues rather than simply found in serum. We do this by testing a Zinc/Copper ratio rather than just one or the other. If the ratio is good (zinc higher than copper), then this may indicate levels are good...but it isn't an exact science.
poster:Maggie1998
thread:498689
URL: http://www.dr-bob.org/babble/alter/20100703/msgs/953205.html