Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 You can e-mail me at carlampham@... regarding the Pyroloria. My son has it and we are treating it pretty successfully right now. Carla pyroluria Would anyone who has this dx or know much about it please email me off-list please? I have some specific questions. Thanks Prue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Robin, It's a KP Test or a Kryptopyrrole test. Basically, it tests for pyrroles in the urine. Yes you need a prescription. Not many doctors will recognize the test. Carla Pyroluria Anybody-- How would you test for pyroluria. (I know a urine test but do we need a doctor's prescription?) I didn't know what it was but I just clicked on an explanation link and the few symptoms they mentioned there absolutely fit . It mentioned a urine test but also to test for Manganese levels. L. just mentioned this in his last post but I can't find the reason why manganese is related. thanks, Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Thanks, Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 Do you mind explaining what this is? Thank you, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi I was wondering if I should bother looking into pyroluria as a condition that may be the source of my son's problems. Is this a valid condition and how does mercury toxicity play a part in this condition? My son has PANDAS. thank you in advance Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 : Just read up a little on Pyroluria and my son fits that also. What really caught my eye was the inability to tan. He would when he was very very young, but hasnt in many many years and burns quickly then back to WHITE. And all the symptoms and defieciencies fit with autism in some way too. Eileen > > , > > > > I appreciate the article, but I'm a little puzzled. is > currently getting 1 tsp CLO every day. I believe that's in line > with Dr. Megson's protocol. Do you have any ideas of anything else > we can try? His hearing is even more sensitive than his eyes, > although he has been very light sensitive lately. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 Eileen, you'll be happy to hear that Pfeiffer considers pyroluria a specialty. will be tested when you see them next month. > > : Just read up a little on Pyroluria and my son fits that > also. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 YEAH He has a regular f/u with his Neuro tomorrow and I was going to ask for it along with another Thyroid test and I figured I was going to get a fight as I dont explain myself very well. I understand the concepts but have a hard time verbalizing them. Eileen > > > > : Just read up a little on Pyroluria and my son fits that > > also. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 My 8 year old was just diagnosed with Pyroluria. Can anyone tell me more about this? Hi Val Go to http://www.diagnose-me.com/cond/C372380.html and you will find the info our doc gave me. Seemed to respond well for my son with zinc, B6 (in the form P5P) and some manganese, Good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 There are pretty good descriptions at the following sites: http://en.wikipedia.org/wiki/Pyroluria http://drkaslow.com/html/pyroluria.html FYI, B6 and magnesium supplements will make up for the fact that kryptopyrrole strips them from the body, but they aren't really a " cure. " For our 6yo son, he tested very high for kryptopyrrole 3 years ago and we have been including vitamin A (as cod liver oil) C, E, and coenzyme Q10, as well as evening primrose oil, which (I think) are the reason his kryptopyrrole readings are back in the normal range now. We have also supplemented magnesium to address deficiency. We did try B6 (which he also tested low in) but that cause significant behavior problems (and hence our focus on the antioxidants). Good luck. Haks <cathy@...> wrote: My 8 year old was just diagnosed with Pyroluria. Can anyone tell me more about this? Hi Val Go to http://www.diagnose-me.com/cond/C372380.html and you will find the info our doc gave me. Seemed to respond well for my son with zinc, B6 (in the form P5P) and some manganese, Good luck Quote Link to comment Share on other sites More sharing options...
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