Methylation and Pyroluria

[Immi]

Hello everybody,

This is my first post on here. I don't suffer of CFS exactly, but have been utterly exhausted a few weeks back for about two months. Now I'm functioning better already, but brainfog continues. I don't know what has caused my improvement exactly, it could be a reduction in stress, or adding supplements such as B12 and Pyroluria-supps (Zinc, B6).

I was diagnosed with Pyroluria this spring but am still unclear about what I should think of this "disorder". I have a feeling that it is not a "disease" per se but just a marker indicating that something else in the body is not working. I've been wondering whether Methylation-issues could be the thing that is causing Pyroluria, since a German doctor (Dr. Kuklinski) claims that Pyroluria is just the result from NO/ONOO-problems, of which richvank again says that they are subordinated to methylation issues.

Any thoughts on that? Does anybody know of anyone who has discussed this matter?

Any help would be greatly appreciated!

Best,
immi

 

[ahmo]

Hi Immi. I can't say which comes first, pyroluria or methylation probs. Certainly, it seems that those w/ pyroluria also have methylation issues. (there's a yahoo pyroluria group, not very active, but often interesting questions and answers) There seem to be differing opinions re whether pyroluria is an entity on its own, or the results of other things. It became an entity before there was genetic testing. My own response, and my genetic markers, lead me to suspect that it at least involves MTHFR and CBS defects. Certainly, MTHFR often leads to pyroluria symptoms.

Before I started GAPS diet and from those forums uncovered pyroluria, MTHFR, and the rest, I was following some of Pall's info re NO, treating myself w/ aspirin when I was crashing. This worked reasonably, but I now know it was probably K+ issues I was working around. When I took the questionnaire for pyroluria, and realized this accounted for the many connective tissue ailments I'd suffered for through my life, I added those supps and got relief from the mental negativity that I'd been burdened by during the past 2 years. I didn't return to working w/ B12 until some months after that. Then I went to Freddd's Protocol after yet again getting no results from Rich's SMP. This path, getting all the 4 "Deadlock Quartet" components balanced, has been really excellent for me. In some ways, my health and mental state has never been better, even though I'm still pretty much housebound. Don't know if this is helpful. Here are 2 links you might find useful. First is a questionnaire, second is a protocol. Drs Kamsteeg and Klinghardt seem to be the leading experts. Best to you, ahmo

http://www.hputest.nl/evraag.htm
http://www.klinghardtacademy.com/images/stories/powerpoints/hpu 2009.pdf HPU doc.

 

[Violeta]

That sounds a lot like porphyria, is it related?

 

[ahmo]

That sounds a lot like porphyria, is it related?

Violeta, I think it's included in porphyria spectrum. Just on wikipedia, both are associated w/ heme issues. My GP said no relationship when I asked, but I've seen others suggest there is. Both conditions are associated w/anxiety, even hallucinations. Actually, here's something more definitive from Wiikipedia:

Pyroluria (or malvaria from the term mauve factor) involves hypothetical excessive levels of pyrroles in the body resulting from improper hemoglobin synthesis.[13] Carl Pfeiffer believed that pyroluria is a form of schizophrenic porphyria, similar to acute intermittent porphyria where both pyrroles and porphyrins are excreted in the human urine to an excessive degree

http://en.wikipedia.org/wiki/Pyroluria cheers, ahmo

 

[Violeta]

Violeta, I think it's included in porphyria spectrum. Just on wikipedia, both are associated w/ heme issues. My GP said no relationship when I asked, but I've seen others suggest there is. Both conditions are associated w/anxiety, even hallucinations. Actually, here's something more definitive from Wiikipedia:
http://en.wikipedia.org/wiki/Pyroluria cheers, ahmo

Thank you, ahmo, I had seen pyroluria mentioned several places, but never realized what it was. Does anyone make recommendations similar to those made for porphyria? For example, high carbohydrate diet providing adequate glucose to slow down production of heme precursors, avoid foods that induce Phase I (cytochrome P450) detoxification, avoid purple foods, avoid low carb diets, avoid caffeine, avoid sulfur containing foods(and I can't think of others off the top of my head right now).

It's interesting that celiac is mentioned in conjuction with the pyroluria. I was just thinking that I should try to avoid gluten (again). I had been feeling a little better and let my guard down against some of the diet recommendations for porphyria, and I am back to feeling terrible with anxiety and depression, so maybe I should cut out the obvious foods first.

Do you find you have a craving for ice cream? I have read that people with porphyria always run to ice cream for relief, and I just figured out why....the glucose helps shut down the heme production AND the dairy slows down absorption of iron. (I'm actually not sure if iron has anything to do with porphyria or pyroluria)

I was thinking about either something you said in your post or something at the wiki link, and the phrase isn't that ironic came to mind, and then I was wondering why the word ironic, meaning what it does, has the word iron in it.

 

[ahmo]

Hi Violeta. I'm on the opposite of the diet you mention. The first gains I made in my condition came when I discovered the GAPS diet (Gut and Psychology Syndrome). This was not easy for me to undertake, as I'd been vegetarian for 30 years. However, 3 days after dropping gluten and dairy, mys nervous system finally calmed down. The gains have continued. I'm on a v minimal GAPS Intro diet, my carbs are from cooked zucchini and juiced carrot and lettuce. Each time over the past year and a half on the diet I've tried to add even the most easily digested starch, a bit of pumpkin, I've been intolerant. Prior to starting the diet, I'd lost my appetite for most foods, but I what I did eat was all high glycemic. Most of my life I'd needed to eat frequently, but now, eating meat/bone broth, animal fat, small amounts of meat, and the afore mentioned veggies, I have no cravings, eat only 7AM, 4PM. Totally different. In the past I've enjoyed ice cream, but I was more inclined to eat bread or some sweet baked good.

Ironic . V interesting link you've made. Speaking of which, tho maybe not "ironic", I realized it was stupid of me to mention my GP's opinion, as he's known nothing whatsoever about my condition, from Day 1 until now. I think the second link I gave you initially, Klinghardt, is where you can find the best short-form advice. Great pdf w/ suggestions, incl supps. Best to you, ahmo

 

[Violeta]

Hi Violeta. I'm on the opposite of the diet you mention. The first gains I made in my condition came when I discovered the GAPS diet (Gut and Psychology Syndrome). This was not easy for me to undertake, as I'd been vegetarian for 30 years. However, 3 days after dropping gluten and dairy, mys nervous system finally calmed down. The gains have continued. I'm on a v minimal GAPS Intro diet, my carbs are from cooked zucchini and juiced carrot and lettuce. Each time over the past year and a half on the diet I've tried to add even the most easily digested starch, a bit of pumpkin, I've been intolerant. Prior to starting the diet, I'd lost my appetite for most foods, but I what I did eat was all high glycemic. Most of my life I'd needed to eat frequently, but now, eating meat/bone broth, animal fat, small amounts of meat, and the afore mentioned veggies, I have no cravings, eat only 7AM, 4PM. Totally different. In the past I've enjoyed ice cream, but I was more inclined to eat bread or some sweet baked good.

Ironic . V interesting link you've made. Speaking of which, tho maybe not "ironic", I realized it was stupid of me to mention my GP's opinion, as he's known nothing whatsoever about my condition, from Day 1 until now. I think the second link I gave you initially, Klinghardt, is where you can find the best short-form advice. Great pdf w/ suggestions, incl supps. Best to you, ahmo

You really have to look out for yourself, don't you? That's great that you're figuring stuff out by yourself.

That's interesting that the GAPS diet worked for you, since, despite what your doctor says, both pyroluria and porphyria have an incredible commonality! A low carbohydrate diet is definitely a trigger for porphyria, so there must be some sort of difference. I'll have to look at pyroluria more closely.

I was wondering if over- production of heme precursors wastes potassium. Porphyria includes having low potassium, but I never read why. So far all I've found is that ferroprotoporphyrins waste potassium, but I'm not sure exactly what that means. I have to keep looking, but if you know anything about that, I would be interested.

Do you know why the aspirin helped you?

Thanks

 

[Bluebell]

Hmm, this is a coincidence - I was just reading about pyroluria earlier today, for the first time. (I think I'd seen the term before and knew it referred to a medical condition, but it sounded like an exotic tropical disease or something!)

I ran across a guest blogger's story about having it on the Jaminet's Perfect Health Diet website. I looked it up on Yahoo and many of the symptoms that I saw listed for it don't describe me at all (such as ADHD, quick temper, histrionic behavior, motion sickness, fruity-smelling sweat, dislike of disruptions to routine, low histamine), though some do describe me (poor dream recall, favor vegetarian eating, crowded teeth, allergies, inability to tan in the sun, sensitivity to bright light, cold hands and feet, constipation, etc.)

Here are some descriptions that I came across:
http://www.mensahmedical.com/resourcecenter/pyrroledisorder.html
http://www.integrativepsychiatry.net/pyroluria.html
http://www.primalbody-primalmind.com/?p=398
http://perfecthealthdiet.com/2013/01/a-tale-of-recovery-from-panic-disorder-and-ocd/ (see the author's discussion thread below the story for actual mentions of pyroluria)

I also saw an informative blog post/discussion thread about it by a woman who lives in the Chicago area which I didn't save the bookmark of. She noted that there had been a newspaper article on it in Australia and after that, a wave of Australia/New Zealand visitors had visited her blog. She provided the supplement regime for pyroluria prescribed by her doctor (which had a modest zinc amount, unlike some other pyroluria doses I've come across today), and it pretty much described basic things I'd been taking for many years before I knew about methylation and MTHFR and stuff. I'm sure that taking those things probably did help me, but they were not a complete solution for whatever is wrong with me.

Apparently the urine test for pyroluria is available from a couple of places and costs about $80. However, the main private lab sites such as privatemdlabs and labsdirect (or directlabs; I always forget which it is) don't seem to offer it - I checked. The first three hyperlinks I gave above offer ways to order the test, I think.

Pyroluria seems to not be taken seriously in some quarters of the medical/health community -- e.g., from Wikipedia: "Few, if any, medical experts regard the condition as genuine, and few or no articles on pyroluria are found in modern medical literature;[23] the approach is described as "snake oil" by pediatrician and author Julian Haber."

For me, if it hasn't even been mentioned (not even in order to be debunked) by Dr. Weil and/or Dr. Oz (and it hasn't, as far as I can tell), it's probably quite a bit "out there" -- but that doesn't mean that something is not an actual problem, of course.

And then the next region in my mental map is occupied by folks such as Dr. Mercola -- and yep, he HAS mentioned it! http://articles.mercola.com/sites/a...actor-that-greatly-contributes-to-autism.aspx

The medical practitioners and patients who do mention it online seem to be convinced that it's describing something real, in their experience.

As Dr. Emily Deans wrote, "Pyroluria is a bit of an alt med term. Most of the research/papers were done by one guy, and the urine test for it seems a bit sketchy. However, it certainly seems plausible that some people aren't able to utilize zinc/B6 well due to certain genetic issues." http://evolutionarypsychiatry.blogspot.com/2012/01/new-study-on-vitamin-d-and-depression.html

 

[Violeta]

Hmm, this is a coincidence - I was just reading about pyroluria earlier today, for the first time. (I think I'd seen the term before and knew it referred to a medical condition, but it sounded like an exotic tropical disease or something!)

I ran across a guest blogger's story about having it on the Jaminet's Perfect Health Diet website. I looked it up on Yahoo and many of the symptoms that I saw listed for it don't describe me at all (such as ADHD, quick temper, histrionic behavior, motion sickness, fruity-smelling sweat, dislike of disruptions to routine, low histamine), though some do describe me (poor dream recall, favor vegetarian eating, crowded teeth, allergies, inability to tan in the sun, sensitivity to bright light, cold hands and feet, constipation, etc.)

Here are some descriptions that I came across:
http://www.mensahmedical.com/resourcecenter/pyrroledisorder.html
http://www.integrativepsychiatry.net/pyroluria.html
http://www.primalbody-primalmind.com/?p=398
http://perfecthealthdiet.com/2013/01/a-tale-of-recovery-from-panic-disorder-and-ocd/ (see the author's discussion thread below the story for actual mentions of pyroluria)

I also saw an informative blog post/discussion thread about it by a woman who lives in the Chicago area which I didn't save the bookmark of. She noted that there had been a newspaper article on it in Australia and after that, a wave of Australia/New Zealand visitors had visited her blog. She provided the supplement regime for pyroluria prescribed by her doctor (which had a modest zinc amount, unlike some other pyroluria doses I've come across today), and it pretty much described basic things I'd been taking for many years before I knew about methylation and MTHFR and stuff. I'm sure that taking those things probably did help me, but they were not a complete solution for whatever is wrong with me.

Apparently the urine test for pyroluria is available from a couple of places and costs about $80. However, the main private lab sites such as privatemdlabs and labsdirect (or directlabs; I always forget which it is) don't seem to offer it - I checked. The first three hyperlinks I gave above offer ways to order the test, I think.

Pyroluria seems to not be taken seriously in some quarters of the medical/health community -- e.g., from Wikipedia: "Few, if any, medical experts regard the condition as genuine, and few or no articles on pyroluria are found in modern medical literature;[23] the approach is described as "snake oil" by pediatrician and author Julian Haber."

For me, if it hasn't even been mentioned (not even in order to be debunked) by Dr. Weil and/or Dr. Oz (and it hasn't, as far as I can tell), it's probably quite a bit "out there" -- but that doesn't mean that something is not an actual problem, of course.

And then the next region in my mental map is occupied by folks such as Dr. Mercola -- and yep, he HAS mentioned it! http://articles.mercola.com/sites/a...actor-that-greatly-contributes-to-autism.aspx

The medical practitioners and patients who do mention it online seem to be convinced that it's describing something real, in their experience.

As Dr. Emily Deans wrote, "Pyroluria is a bit of an alt med term. Most of the research/papers were done by one guy, and the urine test for it seems a bit sketchy. However, it certainly seems plausible that some people aren't able to utilize zinc/B6 well due to certain genetic issues." http://evolutionarypsychiatry.blogspot.com/2012/01/new-study-on-vitamin-d-and-depression.html

What do you suppose the reason for debunking pyroluria might be? I wonder if it's the same reason that big brother has made it so difficult to get a diagnosis of porphyria? Here's an article by Steven Rochlitz in which he tells about difficulties provided by basically the pharmafia to get a diagnosis. Keep in mind that pyroluria and porphyria have a lot in common, perhaps even cause.

As for Dr. Weil, did you know that he came to be through the Prevention magazine. Many years ago now Prevention Magazine sold out to the drug company. You didn't have to look online to realize that;(but I did, although I can't find the new owner now. Wiki lists the new editor, but not the owner!) there started to be page after page of drug advertisements. Andrew Weil was the herbalist that became their cover herbalist to pretend that they were still into alternative therapy. He was hired to keep it watered down, luke warm, and become known as a trusted spokesperson that we could look to.

I would take the time to try to convince you of the same for Dr. Oz, but I don't feel like it's worth the time. You can see if there's evidence of that yourself.

Take into consideration that articles at wikipedia might be slanted, too.

But back to the main question, why would the pharmaceutical/medical/insurance industry (i.e., those who own our country) be in denial about pyroluria?

 

[ahmo]

Violeta, here's the first Pall reference I got today. My own references are buried in my early ME/CFS compilations. I think some of his work was quoted in the Dallas CFS group which also had a lot of input from Dr. Cheney, but I could be mixing things up. You'll find more if you search. The aspirin was to balance nitrous oxide.
http://chronicfatigue.about.com/od/treatmentprotocols/a/Pall_Protocol.htm

Re potassium, I don't know what the link is., sounds like you've got more of a handle as to it's origin. There's a v interesting thread started by Freddd:
http://forums.phoenixrising.me/inde...kalemia-and-methylfolate-insufficiency.22968/

And Caledonia started one last week, titled something re Potassium. It seems many of us have this issue. As I said in Caledonia's thread, I've finally understood how key an issue this is in my symptoms, and need even more when under stress or detoxxing (which is, of course, stress!).

Bluebell,

(such as ADHD, quick temper, histrionic behavior, motion sickness, fruity-smelling sweat, dislike of disruptions to routine, low histamine), though some do describe me (poor dream recall, favor vegetarian eating, crowded teeth, allergies, inability to tan in the sun, sensitivity to bright light, cold hands and feet, constipation, etc.)

Many of these describe me, but some don't, notably I have high histamine, even tho 24 Hr urine didn't show this. But motion sickness has always been an issue, poor dream recall, cold hands and feet, pref for vegetarian eating. I now look at my past life through the lens of ADHD, and this, too, seems to fit. But particularly, re quick temper/histrionic behavior, I spent my whole adult life trying to eliminate my over-reactiveness, through every type of therapy possible, from diet to kinesiology, through to cathartic therapies. Not until I added the pyroluria/MTHFR supps dis this change. And then adding in Yasko's suggested low dose lithium, and eventually her MAO gene RNA drops. I have finally overcome this terrible behavior,

I've read many comments re urine tests for pyroluria, both on yahoo pyroluria group and yahoo GAPSdiet forum. They warn that these tests are notoriously unreliable, need to meet very exacting conditions to be considered valid. I never did test, just took the questionnaire I linked in my first post, and when I realized how much this described my life, began supplementing. My first recognition was the combination of high histamine + sun sensitivity. I'd only experienced the sun sensitivity since collapsing w/ ME/CFS, but it was severe. A week after beginning the supps, I was, and am, no longer sun sensitive. Then there was the list of connective tissue problems. This had been a major problem for me throughout my adult life: low back, frozen shoulders, Dupuytrens contractures. I'd had non-surgical corrections of my Dupuytrens 8 years earlier, but there was remaining tightness. 3 weeks into the GAPS diet my hands softened into normality. That was before the supps, just the removal of gluten and dairy, as well as other starches. Amazing!

MY GP knew of pyroluria when I revealed my discoveries to him. When I returned for my next visit, he said they were now reviewing all their patients w/ mental health issues, and one of the practice docs was going to do further studies in pyroluria. I can understand MD's ignoring it, since it doesn't lead to Rx, but to a handful of vitamins and minerals. In Violeta's eloquent phrase, the pharmamafia. There seems to be an ever increasing tendency to label things psychiatric disorders and write the rx that enslaves people, rather than liberating them by correcting the underlying nutritional imbalances. The yahoo GAPS groups are filled w/ people healing their autistic kids and anxiety disorders through diet and supps. And sometimes there's a post from someone fearful of authorities intervening to treat the disorder in the "proper" way, ie pharmamafia. And very interesting picture Violeta paints of Dr. Weil. This explains a lot to me, why I don't ever consult his info, as it's so banal. Cheers, ahmo

 

[Bluebell]

I was certainly not saying that I follow or wholeheartedly believe what Dr. Weil or Dr. Oz says (or what anyone says). I disagree with both of them on quite a number of topics.

I guess people misunderstood what I was trying to say about how I personally evaluate how "mainstream" an "alternative" health topic has become in the U.S. Maybe I conveyed that point too subtly, because that was an entirely different thing to saying that I always support what those two men say, which I did not say.

I certainly am not on the side of any pharmaceutical "mafia" and I am well aware of the many complications in society and topics that are complex and have powerful forces fighting for various positions.

People understandably have a tendency to be dismissive of folks they don't know, but I do not need anyone to spend time teaching me how to think critically about Dr. Oz or Wikipedia or any other source, including what anonymous folks on internet health forums claim about biology and medicine.

Indeed, I gave a wide array of links and information about the subject of pyroluria in my post, showing that I had looked into it from many points of view, in the several hours that I had devoted to it.

Dr. Weil did not "come to be" through Prevention magazine. He went to Harvard and was an ethnobotanist and became a medical doctor and a bestselling author with a prominent position at the University of Arizona, a career which a magazine would not have the power to orchestrate. I have no idea how he has ever been related to Prevention magazine (which as a news source I never took as gospel, although I've only sporadically read it) but I have known of him for 20 years, including going to a weekend seminar by him and Dr. Christiane Northrup many many years ago, and I cannot say that I have ever associated him in my mind with Prevention magazine.

I think being open-minded and willing to experiment and discuss, while also being logical and respectfully critical of ALL ideas and hypotheses is a good and healthy way to approach life. It is not my intention to be personally critical of anyone or make them feel defensive about a topic.

 

[Violeta]

Sorry about that.

Here's a cute blog about how a mama dealt with her son's pyroluria.
http://milehimama.blogspot.com/2006/11/yep-im-quack.html