Advice on how to manage a rare medical condition called, Pyroluria:?

I was diagnosed as STRONGLY POSITIVE last September 2005.
Pyroluria is a severe vitamin deficiency of vitamins:
B2 (Riboflavin)
B3 (Niacin)
B6 (Pyridoxyl - 5 - Phospate)
D3 (Cholecalciferol)

and the amino acid:
Aracadonic Acid (Omega - 6)

As well as other MEGAdoses of vitamins as diatary aids, and such.

I am also taking prescribed medications that require a physicians careful monitoring & priscription.

I most recently learned of 鈫揃2 & 鈫揃3 levels that are commonly present in Pyrolurics.

After starting just a little Niacin, I am more focused, alert, and have better eye-contact. That's only after one day of taking it! It works instantly for me.

It is very difficult to be my "own" Orthomolecular Psychiatrist (researching the MEGAdoses of vitamins and dosing and such). I DO have a wonderful hemotologist and great primary care physician that do lab work for me, BUT I'm "teaching" them about the disorder. I would prefer it, the other way around. Suggestions anyone?

Unfortunately for many people with rare diseases, they often end up knowing more about it than the doctors that treat them. That is just because there are soooo many diseases, that doctors cannot learn everything about all of them, and often they have to focus on the more common ones in order to be able to help as many people as possible. I've seen quite a few patients that know more about their own disease than the doctor. The good thing for them, and you since you are one of them, is that they tend to do better than the average person. The fact that you are researching your disease, and following along with your doctor is a very good sign, and makes me think that you will have it well under control. You already seem like you are making good progress.
Your doctors wil learn about your disease, maybe not as fast as you, but soon they will likely know all they need to treat you and keep you feeling as good as possible. My only suggestion is keep doing what you are doing, and you should be feeling better than ever in no time!