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Re: Pyroluria: Larry H., chemist, anyone...any help? Simus

Posted by Larry Hoover on June 21, 2004, at 11:32:40

In reply to Pyroluria: Larry H., chemist, anyone...any help?, posted by Simus on June 21, 2004, at 0:20:39

> After a lifetime of illness, both physical and mental, I did some on-line investigation and matched my ongoing symptoms to pyroluria.

I take it you're read descriptions along the line of this one?

> A positive test confirmed my suspicion.

Did you have a blood level of cis-linoleic acid done? And how is your glucose tolerance?

> First of all, can someone tell me why the medical community generally seems to not be familiar with this condition?

I think it is seen as an idiopathic quirk, something unusual about a subject, but not pathological.

> Second, I am having only moderate success treating it with supplements.

You have seen some improvement, then?

> The meds I am on are 150mg Wellbutrin and 1mg Xanax (after eight years of SSRIs). I supplement with a multivitamin, B6, zinc, magnesium/calcium, C, and quercetin daily.

How much zinc and B-6?

> And I take B3, B5, B12, Evening Primrose oil, and a few other supplements, but not quite on a daily basis. I drink ginseng/ginger/green teas daily which does help.

How much EPO?

> I would be appreciative for any response. Thanks in advance.

I'm going to go into more detail in my comments to chemist's post, but one of the key issues is indeed the activity of delta-6-desaturase. There may be other reasons for pyroluria, however, it is the prime place to start.

If you have defective d-6-d, you do not convert the dietary essential fatty acid cis-linoleic to the intermediate gamma-linolenic acid. All adverse health effects stem from this, directly. High urinary pyrroles infer high blood pyrroles. Pyrroles bind to and inactivate B-6 and zinc, and pull them into the urine. So, you develop symptoms of malnutrition, despite an adequate diet, even with some supplements.

So, on the assumption that your body is pyrrolic due to GLA deficiency, the key thing is to dramatically increase your *daily* intake of GLA. EPO is one source, but on a gram-per-gram basis, borage oil has more GLA. It may take a long time for you to notice the benefits of supplementing GLA, because every cell membrane in your whole body will be competing for restoration of a normal fatty acid balance.

Every third or fourth day, take fish oil. Fish oil competes with GLA in some respects. That is both good and bad (I'll spare you the details), but taking GLA every day (e.g. 6-10 grams of borage oil), and 3-6 grams of fish oil every fourth day, balances out the effects. Take these oils with your fattiest meal of the day. If digestive upset occurs, cut the dose and increase as tolerance occurs. Your body will adapt.





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