Anybody up on pyrroles/pyroluria?

[PeterPan]

I'm trying to learn more about this to see if it's going on with ds and wondered if anybody could jump start me. Ds has oddly colored bed pads, especially when stressed, and it breaks down in sunlight. He of course has the mental health symptoms. And it seems like the treatment is mainly zinc, b6, etc. yes? Is there a gene connected with this? I haven't found it yet. Anything I'm missing?

I don't really see the point of the labs if you can just do presumptive treatment. What am I missing?

[wintermom]

I had to click on your thread out of curiosity. I'd be interested in learning more, though. I've never heard of this, so I'm off to goggle.

[kbutton]

I think this is one of the rabbit trails someone we know has been down, and it didn't fix things. At the same time, you've had success with some of the biomedical stuff, so? 

[klmama]

I've read treatment is B6, pyridoxine-5-phosphate, and zinc. Others that are supposed to help with absorption of those include C, E, and a bit of manganese.  It seems to me it would be worth working with someone familiar with it to get recommendations for appropriate amounts and types of each nutrient based on his age, weight, blood levels, and symptoms.  

[Pen]

I think some people do just treat (careful with form of B6 used! May need P5P) .
 

There are online symptoms questionnaires.  A few other things can give colored urine, but that’s sounding very suggestive. 

[PeterPan]

20 minutes ago, Pen said:

I think some people do just treat (careful with form of B6 used! May need P5P) .
 

There are online symptoms questionnaires.  A few other things can give colored urine, but that’s sounding very suggestive. 

Yeah, I must not have read carefully enough. I think my brain was getting swamped with names and ideas. I just canceled the regular b6 (which was really too high a dose anyway at 50mg) and switched to a p5p product that is lower dose.

1 hour ago, klmama said:

I've read treatment is B6, pyridoxine-5-phosphate, and zinc. Others that are supposed to help with absorption of those include C, E, and a bit of manganese.  It seems to me it would be worth working with someone familiar with it to get recommendations for appropriate amounts and types of each nutrient based on his age, weight, blood levels, and symptoms.  

Interesting point. I've done everything else to this point. I'll probably start low and work up. Some of the integrative docs around here want to run the whole show, and we're way too far along for that. 

2 hours ago, kbutton said:

I think this is one of the rabbit trails someone we know has been down, and it didn't fix things. At the same time, you've had success with some of the biomedical stuff, so? 

Haha, fix would be a long way off. I'd settle for small piece improvement. Frankly, I've been thinking since he was an infant something was off with his urine. I'm not sure this woudl be a complete explanation even. I'm guessing bringing zinc up will fix whatever was affected by the low zinc, lol. Probably not earth shattering, just a piece. But we're out of kilter enough that just a piece like that might get us back. 

3 hours ago, wintermom said:

I had to click on your thread out of curiosity. I'd be interested in learning more, though. I've never heard of this, so I'm off to goggle.

Well this was where I started http://www.mensahmedical.com/pyroluria-pyrrole-disorder/  but I got there looking for something else. I know zilcho about them. If you really want a rabbit trail, I was researching folinic vs. folic acid and trying to learn about folate receptor autoimmunity. I hadn't heard of it, and apparently it's implicated in some cases of ASD. The theory is that treating the folate issues could prevent autism in offspring. So anyways, the pyrrole stuff was just there as I was reading. But it actually fits. Some of the other explanations I had found for dark urine didn't fit. And his bedpads when he's stressed are GROSS. It's very clear stress (chemical or situational) alters his chemistry and causes this. 

I went ahead and started him on some zinc today and ordered a better kind and the p5p. We'll see what happens. I would take even a percentage improvement at this point.

[kbutton]

30 minutes ago, PeterPan said:

Some of the integrative docs around here want to run the whole show, and we're way too far along for that. 

Haha, fix would be a long way off. I'd settle for small piece improvement. Frankly, I've been thinking since he was an infant something was off with his urine. I'm not sure this woudl be a complete explanation even. I'm guessing bringing zinc up will fix whatever was affected by the low zinc, lol. Probably not earth shattering, just a piece. But we're out of kilter enough that just a piece like that might get us back. 

It sounds worth trying!

I agree that you seem to be doing too well with what you've discovered to let someone else run the show unless what you are doing stops working. A collaborative person is the best--even if they want you to try more things at once, then they are going to ask questions and work with you. I wouldn't be comfortable with someone that is pushy.

The people we know that went down this rabbit hole and didn't have success were doing a variety of things, and it was with some kind of integrative doc in your big city area that does ASD stuff. 

[PeterPan]

16 minutes ago, kbutton said:

I wouldn't be comfortable with someone that is pushy.

The ones I've seen mentioned locally are VERY pushy, not collaborative at all. And you're right, that's the word I would be looking for, collaborative. 

17 minutes ago, kbutton said:

The people we know that went down this rabbit hole and didn't have success were doing a variety of things, and it was with some kind of integrative doc in your big city area that does ASD stuff.

I can totally imagine that. That's why I haven't even tried. I think people who aren't well researched (docs) try to control so they can blame you when it doesn't work. True health requires personal responsibility, not control freak techniques. 

Well I looked into the genetics, and so far what they're saying to look at is an indirect gene NBPF3 and the RS4654748 on it. Happily, my peeps are only heterozygous for it, which to me means that even with supplementation it will turn out to be a small piece. We'll see, but that's my guess. Ironically, I'm homozygous for the defect, go figure. Could explain the cravings I get for molasses and why I feel better on ginger, hmm. 

[kbutton]

27 minutes ago, PeterPan said:

I think people who aren't well researched (docs) try to control so they can blame you when it doesn't work.

QFT

[BeachGal]

If you want more research, this website might be a good place to start. I’m linking older information but the site has a bit more if you're interested.

http://orthomolecular.org/library/jom/1997/articles/1997-v12n02-p096.shtml

An MD who tested and treated this in the US is Hugh Riordan (passed away). His work might be online. No doubt he’ll be called a quack but if the symptoms seem to fit and the treatment isn't dangerous, might as well give it a try.

Edited November 27, 2020 by BeachGal

[klmama]

PeterPan, Dr. Mensah uses the "advanced nutrient therapy" protocols developed by researcher William J. Walsh, PhD, to help people with depression, autism, ADHD, bipolar, etc., and I know Dr. Walsh has spoken very highly of him.  Dr. Walsh runs the non-profit Walsh Research Institute and trains medical doctors in his protocols.  

[PeterPan]

On 11/27/2020 at 2:57 PM, kand said:

I looked into it a couple years ago when I heard someone here bring it up, because it seemed like a potential answer to things for one of my kids. Nothing I came up with gave me any confidence in pursuing it, though. Here’s a link explaining some of the issues (not an expert source, but the info linked is all research based): https://drbillsukala.com/pyroluria-disease-myth/

Doesn’t seem likely to do harm, though.  

Interesting. I'm homozygous for the defect and have some pretty significant symptoms (serious memory loss, like yesterday I was trying to figure out what day it was, I remember almost nothing about raising my kids, etc.) that would be pretty hard to fake/modify with placebo effect. 

On 11/27/2020 at 3:19 PM, BeachGal said:

If you want more research, this website might be a good place to start. I’m linking older information but the site has a bit more if you're interested.

http://orthomolecular.org/library/jom/1997/articles/1997-v12n02-p096.shtml

An MD who tested and treated this in the US is Hugh Riordan (passed away). His work might be online. No doubt he’ll be called a quack but if the symptoms seem to fit and the treatment isn't dangerous, might as well give it a try.

Yes!! It continues to perplex me that psychiatry will not draw these obvious connections between symptoms and causes. Even there, saying we need to call it schizophrenia and then saying well 50% have this underlying, 20% have that underlying, just demonstrates again the weakness of the dictionary style, symptom driven DSM that never cares about underlying biology/chemistry. 

On 11/27/2020 at 4:58 PM, klmama said:

PeterPan, Dr. Mensah uses the "advanced nutrient therapy" protocols developed by researcher William J. Walsh, PhD, to help people with depression, autism, ADHD, bipolar, etc., and I know Dr. Walsh has spoken very highly of him.  Dr. Walsh runs the non-profit Walsh Research Institute and trains medical doctors in his protocols.  

Oh that's interesting! I came across his Mensah Medical site and I wasn't sure how high up the totem pole I was going there to find someone who thinks really hard. It's definitely where some of our answers are going to lie, but I can't pull the plug and pay that kind of expense till I have the right person. I keep figuring stuff out myself. 

I will say this new piece, with the zinc and B6, may explain some of the oddities with the stuff I've been doing with ds. His system just EATS UP 5HTP. It's astonishing. I take 200mg 2X and I'm golden. He almost never maxes out. But he has scads of white spots. The nutritionist had tracked them on me, but she never explained anything, kwim? She was always just eat this, do this, very little explanation, which fit where I was but doesn't help me help ds, lol. So apparently zinc or B6, can't remember which, help with conversion of 5HTP to serotonin. So it makes sense why he'd be using up so much if he has a deficiency. It also makes sense why taking the buspar has this sort of worse in the end effect. I knew you needed enough pieces, but he's really missing some pieces. At least it's a solvable problem.

I took the P5P this morning and the chelated zinc. They seem pretty good. Well that and in an absurd move that breaks ALL my usual rules (about doing one thing at a time) I started an inositol supplement as well! Apparently that could help with my androgen levels. So we'll see. After taking those goodies, I felt a surge like what I get with the Buspar. I've assumed it's sort of a serotonin surge, because then it calms down and your body is like oh thank you and very calm. Then, after 3-4 hours, it was gone. I took another dose of the P5P, so we'll see. It did it again. I've gotten pretty good about listening to my body.

My main driver on this is getting ds' mental health stabilized. He's been maxing out what I could figure out, and I needed more tools. Obviously prescription meds are an option, but we've gotten so far pushing this genetics thing I really thought there might be more. But even this Dr. Mensah is wanting you to do his gig his way. But it would be interesting conversations to have if it could be collaborative. I'll probably start by getting ds' zinc up, since it's clearly deficient. We'll see where that gets us, with the zinc and P5P. If we need more, we could try one of the Walsh trained docs, like you're saying. For me, I'm just excited about the idea that this *might* help my memory. That could be amazing. It has been bad for so long and we haven't really had an explanation why. I wouldn't be able to go back to grad school with the way it has been, and I would if my brain would keep up. I clearly have enough interest in these fields and could earn enough in some of them to make it worth my time doing the types of things I do with ds. Can't do that if you have no memory, lol.

[PeterPan]

Have y'all done EPO=evening primrose oil? It's saying the defect will cause you to leach linoleic acids too. I've had to keep ds unusually high on flax oil just to keep his speech working. I assume there's some connection there, where the tendency is aggravating the apraxia. There has always been a very definite line between the oils and his speech. He has taken 9 capsules of high lignan flax oil a day since he was very young. 

The sites for pyroluria are saying EPO is better. I know my midwife wanted me on it and then had a cow that whatever it was supposed to do didn't seem to be happening, as if my levels were that low that taking it at the normal doses didn't make happen what was supposed to happen.