I was very skeptical that pyroluria existed, even as I was preparing to treat it. As with @garyfritz, the long list of strange & anomalous symptoms seemed almost laughable. ("Pyrolurics tend to crave bacon on the third Saturday of every month...") I made myself a bit unpopular on the facebook Pyroluria forum with jokes like that.
I tested 10.9 for pyyroles (borderline of borderline). That was about a year ago. I began the zinc & B6, & immediately felt calmer (literally overnight). For me it did away with the "dread" or "pit-of-the-stomach" type anxiety - which has never returned. There were other improvements such as softer skin. Six months in, I suddenly started having more vivid dreams again, and better dream recall, as promised. (The other morning I dreamed I was playing football, & threw myself out of bed & smashed my bedside clock. I cut my head & hand. That was a first. I took it as a sign to cut back on the B6.)
My daughter began the protocol not long after me, & noticed a big drop in anxiety right away. Others noticed she was much more engaged socially, & happy. She hates pills, but she's sold on the zinc & B6 & P5P.
We both tried the add-ons for a while - manganese, biotin, primrose oil. They didn't seem to do anything; and stopping them didn't either.
A big problem for me was overdoing the zinc (up to 150 mg/day the first few months), which appeared to give me a nasty copper deficiency: raging skin infections including a boil (my first) about 2 inches wide, much worse psoriasis, crappy mood, cold hands & feet. I got the flu for the first time in years. With the boil the staph bacteria appeared to enter my bloodstream, giving me headache, nausea & fever. It took a week to knock that out, using garlic compresses. (These brought the fever down very reliably.) Anything but antibiotics - which in this day & age may not have worked anyway.
-Cu really is one to avoid. Probably the most horrible suite of side-effects of anything I've had, bar carnitine overdose.
In the course of treating pyroluria, OD'ing on zinc, & adding in copper to rebalance, I cured my 40-year psoriasis - twice. Then it came back. Dr Walsh says that absolute zinc & copper can have a big effect on psoriasis, but it is the Cu/Zn balance that seems to be the most important thing. I obviously hit the sweet spot a couple of times, but couldn't hang on to it.
By the way, if you get copper deficiency, you are open to horrendous infections - it could actually be a medical emergency. You want to know how to reverse the deficiency as soon as you can. I took copper chelate 2.5 mg every 4 hours round the clock. A better way appeared to be grinding up the pill in a mortar & pestle, mixing it with some coconut oil, & strapping it to my arm in a compress: copper works best of all transdermally. (Maybe lower the dosage for TD.) I also took potassium & calcium, which hasten copper uptake, and avoided vitamin C & zinc, which slow it. The transdermal copper seemed to bring the best results. Within 4 days the infections had stabilised.
So does pyroluria exist? No idea. Maybe some other syndrome or mechanism is at play here. The biochemist who runs B12Oils, Dr Greg Russell-Jones, says that high pyrroles happen when you are "trying to insert iron into the pyrrole ring to make heme. If there is no iron the pyrroles are excreted form the cell and you get high pyrroles."
And:
"Pyroluria comes either from functional B2 deficiency or iron deficiency. We are addressing this, but the concept is kind of cure, because you should be able to monitor what is going on by reduction in pyroluria."
So once I get my iron up, I won't need pyroluria supplements according to Greg.
(By the way, he believes the iron ranges are way too low & he is absolutely right about this. My daughter had ferritin 30, & two doctors declined to give her an iron infusion because 30 is "normal". I finally talked one into it. She had two infusions, and each one has made a dramatic difference to her functioning.)
The copper deficiency has put me off oral supplements. I'm doing a spreadsheet on food sources of the nutrients I need, & am gradually replacing the pills etc with foods.
As for methyl & adenosyl B12, I've found transdermal to be many times more effective than sublingual, which has anyway rotted some of my teeth. So many less pills per day there.
Also the Greg approach is that if you get sufficient B2 (currently from a pill, but I'll soon swap that out for dairy), you don't need much or any folate, & no carnitine or potassium. I've been able to drop them too - more simplification. I've been popping pills for years, & I'm really sick of it.
Sorry for the jumble of topics.
I tested 10.9 for pyyroles (borderline of borderline). That was about a year ago. I began the zinc & B6, & immediately felt calmer (literally overnight). For me it did away with the "dread" or "pit-of-the-stomach" type anxiety - which has never returned. There were other improvements such as softer skin. Six months in, I suddenly started having more vivid dreams again, and better dream recall, as promised. (The other morning I dreamed I was playing football, & threw myself out of bed & smashed my bedside clock. I cut my head & hand. That was a first. I took it as a sign to cut back on the B6.)
My daughter began the protocol not long after me, & noticed a big drop in anxiety right away. Others noticed she was much more engaged socially, & happy. She hates pills, but she's sold on the zinc & B6 & P5P.
We both tried the add-ons for a while - manganese, biotin, primrose oil. They didn't seem to do anything; and stopping them didn't either.
A big problem for me was overdoing the zinc (up to 150 mg/day the first few months), which appeared to give me a nasty copper deficiency: raging skin infections including a boil (my first) about 2 inches wide, much worse psoriasis, crappy mood, cold hands & feet. I got the flu for the first time in years. With the boil the staph bacteria appeared to enter my bloodstream, giving me headache, nausea & fever. It took a week to knock that out, using garlic compresses. (These brought the fever down very reliably.) Anything but antibiotics - which in this day & age may not have worked anyway.
-Cu really is one to avoid. Probably the most horrible suite of side-effects of anything I've had, bar carnitine overdose.
In the course of treating pyroluria, OD'ing on zinc, & adding in copper to rebalance, I cured my 40-year psoriasis - twice. Then it came back. Dr Walsh says that absolute zinc & copper can have a big effect on psoriasis, but it is the Cu/Zn balance that seems to be the most important thing. I obviously hit the sweet spot a couple of times, but couldn't hang on to it.
By the way, if you get copper deficiency, you are open to horrendous infections - it could actually be a medical emergency. You want to know how to reverse the deficiency as soon as you can. I took copper chelate 2.5 mg every 4 hours round the clock. A better way appeared to be grinding up the pill in a mortar & pestle, mixing it with some coconut oil, & strapping it to my arm in a compress: copper works best of all transdermally. (Maybe lower the dosage for TD.) I also took potassium & calcium, which hasten copper uptake, and avoided vitamin C & zinc, which slow it. The transdermal copper seemed to bring the best results. Within 4 days the infections had stabilised.
So does pyroluria exist? No idea. Maybe some other syndrome or mechanism is at play here. The biochemist who runs B12Oils, Dr Greg Russell-Jones, says that high pyrroles happen when you are "trying to insert iron into the pyrrole ring to make heme. If there is no iron the pyrroles are excreted form the cell and you get high pyrroles."
And:
"Pyroluria comes either from functional B2 deficiency or iron deficiency. We are addressing this, but the concept is kind of cure, because you should be able to monitor what is going on by reduction in pyroluria."
So once I get my iron up, I won't need pyroluria supplements according to Greg.
(By the way, he believes the iron ranges are way too low & he is absolutely right about this. My daughter had ferritin 30, & two doctors declined to give her an iron infusion because 30 is "normal". I finally talked one into it. She had two infusions, and each one has made a dramatic difference to her functioning.)
The copper deficiency has put me off oral supplements. I'm doing a spreadsheet on food sources of the nutrients I need, & am gradually replacing the pills etc with foods.
As for methyl & adenosyl B12, I've found transdermal to be many times more effective than sublingual, which has anyway rotted some of my teeth. So many less pills per day there.
Also the Greg approach is that if you get sufficient B2 (currently from a pill, but I'll soon swap that out for dairy), you don't need much or any folate, & no carnitine or potassium. I've been able to drop them too - more simplification. I've been popping pills for years, & I'm really sick of it.
Sorry for the jumble of topics.
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