footballguy Posted September 10, 2008 Report Share Posted September 10, 2008 Ok for people with tics or pyroluria do you need to supplement with copper of should you try to avoid it completely? Just curious because iv'e heard it go both ways. Thank you. Link to comment Share on other sites More sharing options...
Caryn Posted September 13, 2008 Report Share Posted September 13, 2008 football guy, BTW, what team are you for? I hope if you are treating yourself for pyroluria that you have had adequate testing done? I say this because pyroluria is tricky to treat and lab testing is a key component. Zinc is necessary in high doses and such doses are toxic to the average person, thus a proper urine screen and zinc status test is necessary before beginning; also a follow up test is important 2-3 months into treatment. As far as the copper question, you really should have yourself tested first. Copper is not recommended when dealing with pyroluria as far as I know. It competes with zinc. Have you read Dr. Walsh? High copper is associated with depression. Hope this helps. Our doctor told us there is a very convincing connection between gut problems and pyroluria. Once we changed our diet the pyroluria corrected itself (over time, mind you, not overnight) and eventually we were able to stop the daily vit treatments. Having said that, stress will cause it to flare up regardless of diet so lifestyle is as important as diet. Link to comment Share on other sites More sharing options...
Chemar Posted September 13, 2008 Report Share Posted September 13, 2008 excellent info there Caryn we used to talk pyroluria a lot here but it kinda faded with so much else also being discussed a good site to learn about pyroluria http://www.diagnose-me.com/cond/C372380.html i know there are a couple of labs that do the test ...here is one...there are others in previous posting here on the subject so a search should bring them up http://www.kryptopyrrole.com/ (can be done without a dr prescription) pyroluria is often genetic in families with history of alcoholism but not exclusively so I have heard reports of people who have been misdx with TS when in fact they had pyroluria and correctly supplementing the B6/zinc etc corrected this Link to comment Share on other sites More sharing options...
footballguy Posted September 17, 2008 Author Report Share Posted September 17, 2008 I have to defintley say the 49ers and yourself? So as far as dietary changes go what did you do that helped your pyroluria Link to comment Share on other sites More sharing options...
Guest Posted September 17, 2008 Report Share Posted September 17, 2008 This is just my personal experience. We have never supplemented copper as we are supplementing zinc & b6, even during chelation therapy when I was using a lot of zinc and b6. Sometimes a multi-vitamin will have 1 or 2 mg of copper in it. The prenatal vitamin that I'm taking right now has 2 mg of copper in it. However, the copper just happens to be in my vitamins. Carolyn Link to comment Share on other sites More sharing options...
lynnie1264 Posted September 17, 2008 Report Share Posted September 17, 2008 Hi So what symptoms are similar with TS and pyroluria? I assume there are tics of some sort? I had never heard of this. I find this interesting as there is alcoholism in my family, {not me, one drink and I'd fall asleep. lol} Lyn. Link to comment Share on other sites More sharing options...
Caryn Posted September 18, 2008 Report Share Posted September 18, 2008 Footballguy-- We are Big Bear fans, but let's not talk about Sunday's game. Just glad to see my guy out there (Orton). Been rooting for him since his rookie year and never understood the romance with Rexie. Anyway, enough on sports-- Pyroluria is a blood disorder that depletes B6, zinc, and magnesium by producing kryptopyrroles that latch on to the stores before they can be absorbed by the body. I wrote a post about it a while back when ds was dx'd with it. It is a digestive disorder according to Dr. Woody McGinnis, who I was in contact with last year. There is a strong correlation so anyone who tests positive for it should check out their digestive system. Here is a link to my old post: http://healthy-family.org/caryn/63 I am not sure how it connects with T.S. only to say that some but not all folks with T.S./tics/PANDAS also have pyroluria. Caryn Link to comment Share on other sites More sharing options...
Guest Posted September 18, 2008 Report Share Posted September 18, 2008 Pyroluria affects people in different ways, but for me when I'm not taking enough zinc and b6 my concentration and sleep are really affected. Tics are also decreased by taking the zinc and b6. Carolyn Link to comment Share on other sites More sharing options...
lurker Posted September 19, 2008 Report Share Posted September 19, 2008 Carolyn, Hi, how are you? I haven't seen you post much lately, and , well, "prenatal vitamin" really jumped off the page there! Did I iss something? Are congratulations in order? Tami Link to comment Share on other sites More sharing options...
Guest Posted September 19, 2008 Report Share Posted September 19, 2008 I'm doing well. I've just been busy with school and work. No, you didn't miss something. I was waiting to announce on here for a little bit longer. The news is that I am pregnant and am due on May 20th. My blog website is: http://carolynjourney.blogspot.com/ if you would like to know more about it and keep up with how my baby and I are doing. I ended up having Progesterone issues, but I think everything's going to be okay this time. Carolyn Carolyn, Hi, how are you? I haven't seen you post much lately, and , well, "prenatal vitamin" really jumped off the page there! Did I iss something? Are congratulations in order? Tami Link to comment Share on other sites More sharing options...
Caryn Posted September 19, 2008 Report Share Posted September 19, 2008 Carolyn, Congrats! That's fantastic news! Caryn Link to comment Share on other sites More sharing options...
Guest Posted September 19, 2008 Report Share Posted September 19, 2008 Thank You. I'm going to go ahead and post a new topic on it so that way I don't flood the copper & pyroluria topic with this. Carolyn Link to comment Share on other sites More sharing options...
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