[julleri]

Greetings!

I have corresponded with MrsD quite often in the vitamin B12 thread of the peripheral neuropathy forum, but have a general question for overall supplementation related to what's known as "pyroluria." It's controversial, but I do believe there is a connection here...

Pyroluria is the body's "self-induced deficiency" of zinc and B6!

While I have not been tested (through the urine test one can order without a doctor), I have recently noticed SIGNIFICANT improvement in many of my symptoms with a zinc supplement and recently a B6 supplement in the form of P-5-P. This might also explain my recent relief with higher-than-usual dosings of niacinamide (niacin production relies not only on tryptophan, but other cofactors, possibly zinc and B6?).

My overall question is, how does one go about safely taking zinc, B6? I read that too much zinc for too long can affect copper. I purposefully got the Jarrow brand "Zinc Balance" which contains a 15-to-1 ratio of zinc to copper, but then I read it's not good to take zinc and copper at the same time? I also take a multivitamin/multimineral from Jarrow (it's really really good by the way, their "1-to-3" formula) that also contains a small amount of copper. I also take 50mg of the P-5-P, and get some "regular B6" (the pyridoxine HCL) in the Jarrow formula. Should I periodically ask a doctor to check my copper levels? Will they just think I'm nuts since no doctor I know of will even regard this as serious, even though I'm seeing good results? What about other supplements, or is starting with just zinc/B6 good enough? (I read that other things can be affected, such as manganese, magnesium, vitamin E, Omega 6, and possibly others that I'm forgetting). I'm currently getting all these other vitamins and minerals in my Jarrow multi (this is a very good multi vitamin and mineral in my humble opinion), with the exception of Omega 6 (which I am thinking of finding a better fish oil supplement with an Omega 3 & 6 combo formula to supplement this). Hopefully this will get me feeling back to normal in no time.

Any thoughts? Here is a good article I found with regards to this condition:

http://planetthrive.com/2010/04/hpuk...me-and-autism/

Thanks!

Jason

[mrsD]

Some doctors give higher doses of zinc and B6 depending on how the test results come out. Severe pyrolurics may need more.

What you are taking is a modest amount. It is fine as a test and treatment for mild pyroluria.

Copper over time when low causes anemia. That would show up in CBC blood tests.

You can take the copper with zinc, as that how nature presents it to us. But if you don't have stomach acid (either genetic reasons or taking acid blocking drugs) you won't absorb much of either.

[julleri]

Originally Posted by mrsD

Some doctors give higher doses of zinc and B6 depending on how the test results come out. Severe pyrolurics may need more.

What you are taking is a modest amount. It is fine as a test and treatment for mild pyroluria.

Copper over time when low causes anemia. That would show up in CBC blood tests.

You can take the copper with zinc, as that how nature presents it to us. But if you don't have stomach acid (either genetic reasons or taking acid blocking drugs) you won't absorb much of either.

Thanks again as always for your advice!

So some doctors would actually by pyroluria? None that I know would, lol. But I am financially unable to see doctors I'd like to see (natural doctors, hehe)

My dosings of zinc have been... Well that's the question. The jarrow contains 15 mg. two of those a day is 30. But the multi also has 15mg. Two of those plus the jar row would be 60. Is that to much? And of course some have told me their spouse takes 100. I just don't know. I've read 50 a day is good.

[mrsD]

Typically the integrative doctors would do this treatment or the DAN (autism ones)...I know a person who had her daughter tested and who tested high and she found a DAN doctor to do the treatment and supervision. (defeat autism now). It worked out fine too.

Pyroluria is more well known in Europe. Most "typical" US doctors would not know about this, you are right about that.

Zinc tends to upset the stomach. Start slowly with it. You don't need high doses. 30mg tops a day to start. OptiZinc is easiest on the stomach (zinc monomethionine). Sulfate is horrible and may cause you nausea and/or vomiting!

[julleri]

Originally Posted by mrsD

Typically the integrative doctors would do this treatment or the DAN (autism ones)...I know a person who had her daughter tested and who tested high and she found a DAN doctor to do the treatment and supervision. (defeat autism now). It worked out fine too.

Pyroluria is more well known in Europe. Most "typical" US doctors would not know about this, you are right about that.

Zinc tends to upset the stomach. Start slowly with it. You don't need high doses. 30mg tops a day to start. OptiZinc is easiest on the stomach (zinc monomethionine). Sulfate is horrible and may cause you nausea and/or vomiting!

MrsD, why does it sometimes take until adulthood for these issues to finally become apparent in someone? I am 32 years old. Granted, I have a history of strange symptoms and anxieties and such my whole life, but it wasn't until now that the symptoms have become so severe that I knew something had to be really wrong. I am not even sure I have this pyroluria... all I know is I feel better on the supplements. I also have never been tested for the MTHFR gene polymorphisms, but have started taking the methylated form of folate and have felt a little bit better. If these are really conditions that have existed with me throughout my whole life, wouldn't it have been more obvious in my teens or 20s? Or does it sometimes take a traumatic or long-lasting illness to bring these about full force? If this makes any sense at all...

Thanks

[mrsD]

I think many things affect kids...but they don't have the tools or ability to articulate how they feel until they are adults.

The growing process seems to be overwhelming to some extent and takes lots of energy. Kids and young adults are always busy busy and it isn't until adulthood that they start to monitor internal states.

Also an adult body takes more nutrients to run properly than a small child's body. There are probably other variables at work too, that have just not been identified yet. The medical community still struggles with autism, and as common as it is becoming, that is a real worry IMO.

You bring up good questions. I have met so many people who as adults cannot articulate clearly what hurts or is bothering them. It is pretty common. I recall my husband's old family doctor coming out to me in the waiting room, asking why he was there. (he had just come home from Vietnam, had gray skin and terrible stomach problems, and couldn't explain that to his own doctor! ) I told him about the gall bladder-like symptoms and that hubby was taking those terrible anti-malarial pills, which are quite toxic.

[pabb]

I think about age 30 is when resilience starts to wane....