Update June 2013: My pyroluria supplementation has changed rather drastically since I wrote this post. These days I am taking 50mg of zinc at night and 100mg of P5P in the morning, amongst many other things. Every single body is different, and within every body are variances that make what is right for you at one time wrong for you in another. It's a complicated process of trial and error finding out what suits you, that's for sure. And as at September 2013 I have dropped my P5P back to 50mg.
I have been taking supplements ever since my pyroluria diagnosis back in August. Actually, I began supplementing even before I got the official diagnosis because I just knew that I had pyroluria. I guess my strong knowing might have something to do with the fact that when my treating GP looked over my completed questionnaire she said she'd never had anyone tick so many boxes before. I am, it seems, a pyroluria poster child.
(Which is nice, because I just thought I was a stuff-up).
I wonder, what would a poster look like for a pyroluric? Black and white. Lots of shadows. Introspective and solitudinal gazing out of windows onto snow-filled landscapes. Something along those lines :)
Give or take, it's been six months of 100 mg of zinc a day and about 750mg of B6 and about 130mg of P5P (the other form of B6) along with other bits and pieces that we sussed out after the blood tests*. Those are tailored for me though and are very high. Anyone who is beginning supplementation needs to start at a low level and build up because your body needs time to adjust. Also, taking these things your body needs so much signals it to begin detoxifying from the high levels of copper you could very possibly be suffering under, and getting rid of copper can be a little traumatic. Best approached as slowly as possible.
I would recommend that anybody who is able to, find a practitioner versed in the Walsh/Pfeiffer protocols to help them along. Don't count on your regular GP knowing anything about it. At all. And, as amazingly arrogant as it all is, if they don't know what pyroluria is, don't expect them to do some research to find out. Many GPs seem unable to resist taking the route of making their patient feel bad about trying to find solutions to their health problems that they don't happen to know anything about. Bizarre and frustratingly arrogant, but true.
If you are in Australia, a good place to start is with the practitioners who practise under the Bio-Balance umbrella. (They also have practitioners in Singapore, New Zealand, the Philippines, Indonesia, Ireland and Norway). Initial consultation can be expensive. Having your supplements compounded is an expensive outlay, but then you're right for months on end. As an indication, it cost me about $500 for testing and consultation, and then another $300 for three months' supply of compounded supplements.
Being sick is expensive. It breaks my heart.
If you are having problems finding anyone that can treat you, or if you have come up against complications in your treatment and are a Facebook user, can I recommend the Pyroluria group. I am a member, and there are a stack of good-hearted people there who will help you find your way.
The level of B6 I'm taking is apparently a bit controversial. My treating doctor, Joanna Hickey at Wellness Medicine in Clifton Hill, who has trained under William Walsh (who, along with Carl Pfeiffer is one of the gurus of pyroluria treatment) has said she can't officially agree to me taking so much B6 because of the risk of nerve damage (neuropathy). But I know my body needs more. I can remember only a fragment of my dream last night, and that's on the crazy dose I'm already on.
I got a bit scared off about the high B6 when I first started seeing Joanna, and so I cut my B6 dosage right back. But the distinction between the menstrual period I had before cutting it back and the one I had afterwards couldn't have been more marked and indicative. The first period was a breeze. Barely any period pain at all, and no sore boobs beforehand. A bit of PMS (but then it's hard to define PMS when I have mood fluctuations for 31 days of the month anyway :) The next menstrual cycle after I dropped the B6 had all of those symptoms return and greater levels of PMS to boot. I have now since upped my levels again and monitor myself for neuropathy.
However, a doctor in the US who has trained under Carl Pfeiffer reports that he regularly treats his patients with a B6/P5P combination of up to 2000mg without problems. According to him the neuropathy is decreased when using P5P. I am also taking niacin (B3) which also helps prevent neuropathy. So I guess I am going to trust my body on this one.
I am an undermethylator, which means that my body is not easily able to get rid of toxins. I know this. In my years with CFS (and especially after antibiotic therapy to treat infections) I often felt "toxic". I still do. It's a system-wide malaise and it is frustrating because you feel so bad, but there is nothing you can definitely say that is "wrong" with you. (Just everything. Like a system-wide computer virus). I have often wished for a broken arm so that people could see how bad I was feeling. A cancer diagnosis would have got me more sympathy. But CFS? Being a walking too-hard basket makes anybody uncomfortable. A pyroluria diagnosis (along with an understanding of how fragile my adrenal glands are) is freakin' fantastic by comparison.
According to Joanna Hickey it can take up to a year for the methylation cycle to work properly once you start treating pyroluria. In that regard I can say that I am feeling so much better than I was. I really do feel like my body is starting to clear itself. I have been trying to detoxify my body in one way or another, intuiting that something was wrong, for so many years now.
As for stress, I still feel at times like I best resemble a paper bag. Too much stress (that other people wouldn't even notice) and I crumple, and then I melt down, and it's a horrible and lonely and deadening experience. However, last week I had a stressful experience with a new client, and after hanging up the phone I could feel that familiar meltdown feeling heading my way. But this time, with deep breathing and a good kind talking-to, I was able to head it off at the pass and move on with my day, though a little shaky. But it beats having to go and lie down for a couple of hours till everything stops feeling overwhelming.
As for energy, my levels are improving. I had an adrenal fatigue situation a year and a half ago, and it's taken me forever to climb back out of that space. An understanding of how much stress your system is under living with pyroluria provides an understanding as to just how depleted your adrenal glands probably are. I've found some real gains using withania and other herbs but again, rebuilding adrenals is not a quick fix. Still, I am appreciating how much easier life is when those little walnut-sized glands that sit atop my kidneys are able to function properly. It's hell when they don't. But I have been gardening and exercising and stuff lately, and while most nights find me collapsed on the couch with a desire to do things that my body doesn't tend to possess, I have some hope that that is changing.
I feel like my ship is being strengthened. It's such a long and slow process that often it feels like nothing is happening and nothing is ever going to change. I guess that after living on a ship that for 30 years has had some serious rickety factors, a strong and steady constitution takes a while to rebuild. And not just on the physical level. That stressful physiology has created some mountainous terrain that needs ironing out. The combination of supplementation on the physical level along with a truly badass therapist on the other is causing me to believe that even though I can't see it, and it feels too good to be true, that a whole lot more peace and ease are coming my way. I do admit I find it hard to believe, but I do believe that thought feels pretty damn good.
If you are ordering supplements, may I recommend Iherb.com? Even including costs associated with ordering from the US to Australia, they are still the cheapest place to order online. New customers can receive $5-$10 off their first order by quoting a current customer's gift code. If you quote mine - ZEY804 - when you are checking out on your first order in the "Apply Coupon Code" section I will receive a discount of $5-$10 off my next order as well - and I can tell you, this broke writer would very much appreciate the extra help :)