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timing! supplements, herx, school ?

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in my disorganized life -- i am behind and now need to decide what to do...

june -- see new doc to see about addressing ds in a biochemical manner -- blood tests, other delayed due to holidays and moving. get results, ds low in zinc and copper/zinc balance too high. will address with minerals and vitamins.


takes time to coordinate with doc office and pharmacy to compound.


yesterday, ds got in to charter school has been wait llisted for -- great news. still expecting challenges as school phobia is one of ds's biggest issues. trouble from last year has left him (and me) with understandable PTSD.


going on trip today and can't get vitamin prescription until next week. leaves about 10 days until start of school. planning to start this quite slowly.


ds just came through what i think was herx related to parasite treatment. back to normal self, possibly better.


should i start these supple or wait until after school begins? he's been on 15 mg of zinc for about a month. this prescrip ups to 50 but we would work up to that anyway. my biggest concern is zinc releasing copper and exacerbation of copper symptoms. however, if we did it slowly, could we contain this? we're going to have to do it during school anyway but is beginning of school too much???? will this help/hinder or if slowly, not be too noticable?


should have been doing this in June/July but just didn't work out that way. what to do???

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Personally, I'd wait until school was in swing. With his history of school issues and the anxiety of a new school, you'll have a lot going on already and adding zinc/chelating copper at the same time will make it hard to tease out what's what.


Now, it's possible that the high copper may contribute to some mood issues but I'd probably still do one thing at a time. If you move slowly and you add a binder like charcoal or bentonite clay (can get in capsules), you can probably chelate the copper without too much reaction. My DD took a small dose of EDTA plus zinc as part of her copper chelation, and we didn't see many bad things.


The one thing that would change my advice is if DS struggles with cognitive issues. For my DS, who has pyroluria (but didn't have a copper issue), adding zinc made a huge improvement in his abilities and we started the zinc about a month before school last year. When he started school, he was the best he'd been in years. But if this isn't your case, my advice would be to do one thing at a time.

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thanks LLM. i think you're right, that we should not add too much but not what i want to do -- i'm anxious to get started on this!!


i'm interested in your knowledge of pyroluria and what you mean when you say your son had pyroluria but not a copper issue. as we've discussed before, my ds has a pretty classic "cuprum" (copper) personality in homeopathic terms -- although that was not his classic remedy that we used in the worst of times that he saw good results from; nor did he seem to see much improvement from using cuprum as a remedy.


he blood tests in the middle range for copper and low for zinc; borderline high for free copper. he tests something like 5.7 for pyroluria -- which was surprising for everyone. doc is basically thinking of him as positive for pyroluria b/c of symptoms and low zinc.


your ddd is neg for pyroluria and high for copper, right? can you give me an idea of the contrast in them that you see as pyroluria vs. non-pyroluria?


thanks for all your help -- your an awesome source!!! how close are you to dcmom -- maybe you two should hang out your shingle together!

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Pyroluria is a condition where your body produces too many pyroles (a byproduct of blood/heme synthesis). Pyroles are "sticky" and have an affinity for zinc and B6. So excess pyroles stick to your body's supply of zinc and B6, making them bio-unavailable (even if zinc plasma levels are normal)to other body processes. Since pyroles are a waste product, your body works to eliminate them, causing you to pee away valuable zinc and B6 along with the pyrole waste.


Because zinc keeps copper in balance, a zinc deficit can lead to excess copper (nothing seems set in stone - every body is a little different and genetics, diet and health can influence this). So I expected my pyroluric son to have elevated copper. He didn't (tho we only tested plasma, not free copper or any other means of testing). He also didn't have a copper personality. Tho he had rages when he herxed, he didn't have the intense mood swings, the artistic flair, the whimsy or spaciness. In fact, after supplementing zinc/B6 for about 6 months, he started consistently testing low for copper (which would make sense, since we were adding so much zinc into the system every day it was sort of a natural copper chelator). So now he actually takes both zinc and copper.


My daughter, on the other hand, tested only mildly pyroluric (13 - with our lab reporting below 10 neg, 11-19 mild, above 20 positive). However, her copper plasma levels were high and she did fit the copper personality. So she "fit" what I expected to find more so than my definitely positive pyroluria son. We chelated with edta for 6 weeks and now just use a small amount of zinc/b6 to maintain balance. Lat time we tested her copper it was in normal range as was zinc (I'll post about her experiences in a separate post regarding MTHFR)


So to your question of pyroluria and copper personality, I think pyroluria can contribute to a high copper situation. But I don't think you can count on it. I also think you can have a copper or zinc imbalance without pyroluria being the cause. I'm not sure I can blame the differences in my kids' personalities on pyroluria, tho I've seen old articles attribute "criminal" behavior to pyroluria. Not sure I put much credence in that. Probably had to do with many of the pyroluria studies being done on the criminal and mentally ill populations in the 70s.


Pyroluria effects my kids in very different ways. For my son, the "true" pyroluric, it left his immune system weak (prone to infections and it generally took him longer to recover from an infection) and really effected cognitive abilities. Do you remember the commercial for Zest soap where they cover one sheet of glass with "a leading brand" and the other with Zest and Zest has no film while the other piece of glass leaves a haze? Within days of starting the zinc/B6 supplement, it was like someone came in and cleaned all the glass. His personality started to shine, he would laugh at jokes he didn't previously understand, he rolled with things instead of getting excessively upset, he would notice small details and he was just more "awake" and "alive". As time went on, he made huge gains in academics as well. My daughter never had that film. She's always been very bright and her issues don't really effect her schoolwork or learning abilities. I don't what role copper plays for him, but I sure know how essential zinc is. I think treating his pyroluria also removed a major hurdle in his lyme treatment. So how much of the improvement was from treating pyroluria vs. treating lyme is hard to say (I can only say lyme treatment had stalled until we cleared pyroluria out of the way).


I know a few other parents have seen some nice improvements when they treated pyroluria - maybe they can chime in with what changes they've seen. In my family, it's a soup of issues, so it's not east for me to say X caused Z.

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