Posted by chris_masterjohn on October 30, 2003, at 9:00:55
In reply to Re: Pyroluria, posted by Blake G on September 2, 2003, at 21:57:23
Hi folks,
Someone recently brought pyroluria to my attention a week ago, and I've never seen anything that brings my symptoms together so thoroughly, nor describes so cleanly why the dietary changes which I've made over the last year and a half have caused the reversal of so many of my symptoms.
However, my doctor has never heard of pyroluria, and it's not on the list of tests he can run at the lab. We sent my urine in anyway with a note to check for pyrroles to see if the lab techs were familiar with it anyway, and we'll see what happens. I'm worried, if they do test, about false negatives, because I eat tons of zinc in my diet and have recently taken B6 in the last few days, and I've read that supplements should be stopped for two days before the test, but don't know the significance or accuracy of this.
I'm having trouble finding technical information, especially as regards diagnosis, and Medline has nothing on diagnosis whatsoever. If anyone could please point me to technical info especially on diagnosis I would greatly appreciate it.
Below is a message on why I believe I might have pyroluria, excerpted from another forum post I'd made.
Chris
________The reason I believe I might have pyroluria is that I've had teeth problems all my life and mental problems since my early teens. The latter (panic disorder, OCD, phobias) aggravated to nearly the point of psychosis after a year of being vegetarian. (read: deficient zinc and arachidonic acid) The introduction of n-3-enhanced eggs, (1 a day) fish, and fish oil did nothing for it (actually, it got worse), but my nearly daily panic attacks ceased almost immediately upon the introduction of daily beef into my diet, and 8 years of anxiety disorder complex disappeared after a month or so of dramatically increasing my egg(3-6/day), (raw)milk, cream, butter, red meat, and liver consumption (and I mean dramatically), which I was actually doing for my teeth. Speaking of teeth, I've had either congenital enamel displacement or fluorosis depending on the dentist, most of my life, and my tooth decay rate when I was a vegetarian went up astronomically, so that ONE dental appt yielded the diagnosis of 15 cavities and two root-infected teeth. After changing my diet I had 0 cavities in the following year and a half. I also had white spots on my fingernails, which are still there but much better. I've always had trouble sleeping, bad digestion, and poor dream recall, which are still significant problems. I have a tendency to have nightmares, which I've never seen listed, but seems related to trouble falling asleep. I've also had a problem with sudden explosions of anger, which are better now. Pyroluria seems to pull all these things together, and also explain why dramatic increases in red meat (zinc) egg (arachidonic acid), milk and milk fat (arachidonic acid, B6) and liver (zinc, B6, arachidonic acid), as well as soaked or sprouted whole grains (B6, and in oats GLA -->AA), reversed many of my symptoms and mitigated others somewhat. I'm hoping if I DO have pyroluria arranging my diet to further maximize my zinc, B6 and AA intake, decreasing my cod liver oil (n-3) intake, and possible supplementation if needed (B6 the most likely candidate), can help me optimize my health and normalize my other symptoms such as trouble sleeping. In the few days since discovering the existance of pyroluria I've increased my oyster (zinc) consumption, and have been supplementing with B6 at night, and I've fallen asleep much easier, and felt better with less sleep upon waking, and the other night had vivid dreams (I rarely "have" dreams, except nightmares occasionally). I have to wait and see if this program continues to work, because often times I find something will help me sleep, but it will lose its effectiveness after a week or two. If anyone can direct me to technical information of any kind, especially detailed information on diagnosis and the proper lab tests for both my own curiosity but more importantly to give to my doctor, I would greatly appreciate it. I can be emailed at ChrisMasterjohn@aol.com. If you email me privately, please put "pyroluria" somewhere in the subject line, preferably in caps, so I notice it. Thanks for any help! Chris
_____
Update:
It's been about a week now that I've been taking B6 in the form of pyrydoxine HCl, and I haven't yet had trouble sleeping, and I've on the whole felt better and more rested getting up in the morning, and woke up before my alarm clock a couple times. I've also been dreaming more, and apparently moving more in my sleep (My pillow came out from under me and fell off the bed last night)-- which I *think* would mean more REM sleep, and be positive, but I'm not sure (intuitively I could conceive of it being a negative effect).
____
I haven't read all the posts yet, but I do want to say on AA and n-3s, etc, that my personal experience is that n-3s in the form of algae-derived DHA, fish oil, or cod liver oil, seem not to have helped me, that I got signficantly worse while still a veggie but adding eggs fish and these supplements into my diet, and got far better after dramatically increasing my AA, so clearly for some people this works. I agree that most Americans have too much n-6 vs n-3, but this comes primarily from vegetable oils and grains, so I suspect that the damage primarily comes from competition with the scant n-3s for desaturase enzymes and deficiency of longer-chain n-3s, rather than overexpression of AA synthesis.Also, EPA interferes with the synthesis and activity of AA when it is pre-formed in the diet, so it IS sensible that some people with pyroluria or some other AA-deficiency would be worsened with EPA/DHA supplementation.
Finally, I agree with Lar that EPO is a relatively poor source for AA as it doesn't not contain AA but rather GLA; however, if, say, to make math easy, 10% of LA is converted to GLA and 10% of GLA is converted to DGLA and AA, than while GLA would be relatively poor, it would be 10 times more effective than LA, which is the main n-6 fat in the SAD I believe.
Thanks for any help,
Chris
poster:chris_masterjohn
thread:255219
URL: http://www.dr-bob.org/babble/20031030/msgs/274948.html