Volunteer opportunity: Organizing Phoenix Rising articles
This section contains all the articles that have been published by Phoenix Rising over the years. As you will see if you browse here, some of the articles are outdated--either the research has been superseded or retracted or the article features an event or campaign that is now in...
Discuss the article on the Forums.

Pyroluria, is it real? I'm really skeptical and here is why.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Deltrus, Apr 24, 2016.

  1. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    There has certainly been a tremendous backlash against the "neurotransmitter imbalance" theory of depression and other mood disorders. That's a whole subject unto itself. Perhaps I only have a superficial understanding of this, but from some of the websites, it seems that the theory of pyroluria at least in the context of mood disorders is that it causes neurotransmitter imbalances. I am finding it hard to reconcile how the same people who (perhaps rightly) decry the biochemical hypotheses that have been used to market antidepressants seem to embrace the same hypotheses in the context of pyroluria.

    Example, this doctor slams the whole notion of serotonin deficiency, very persuasively.
    http://kellybroganmd.com/depression-serotonin/
    Yet elsewhere, in answering questions, she gives her approval of treating for pyroluria.
     
    Last edited: Jun 7, 2018
    Dominic Pukallus and alkt like this.
  2. robinhood12345

    robinhood12345 Senior Member

    Messages:
    118
    Likes:
    45
    Can anyone cite an actual scientific study showing genes or enzyme problems associated with pyroluria?
     
    alkt likes this.
  3. datadragon

    datadragon Guest

    Messages:
    70
    Likes:
    76
    East Coast, USA
    What you are seeing in that symptom list is just a small part of the long chain of what occurs with a zinc (used in 300 enzymes) and vitamin b6 deficiency in the body. When Zinc gets reduced by Copper which is needed to balance it, from stressors or from a deficiency, there will be a reduction in metallothionein production, which is the main heavy metal binding protein in the body. The production of the body's main detoxifying agent and antioxidant, glutathione will also decline when too much Copper gets stored in the Liver organ's tissues as it accumulates. Magnesium (300 enzymes/conversions) is depleted as well from the constant cortisol release. Copper must be bound to special binding proteins, Ceruloplasmin and Metallothionine, in order to be able to get into the cells where it can be used by the Mitochondria to make ATP energy in the Kreb's cycle, and later in exhaustion the body will have lower or deficient amounts of usable copper while copper still continues to come in.

    --Why? What evidence or theoretical reasons are there to link pyroluria genes to ME/CFS? (and apoe4)

    Just some thoughts from my view:

    Women should have a higher risk due to they have more estrogen then men, as estrogen increases copper retention in the kidneys. Estrogen stimulates similar receptors to Aldosterone receptors in the kidneys, increasing sodium, copper, and water retention. Women also sometimes use a copper IUD which feeds copper into the body regularly. Birth control pills contain estrogen increases a woman's risk due to the effect that estrogen has on the body, increasing the copper retention in the kidneys. Science research seem to finally be catching up to this connection with a study published in 2016 (something the pioneers of HTMA and copper toxicity research have already known about for 40 years, trying for decades to get the medical community and public to listen). This study, the largest of its kind with over a million women tracked over 13 years, showed the direct link between hormonal contraceptive use and significantly increased rates of depression. Some high copper or mercury or a bunch of stressors in of itself does not necessarily lead to problems (initially), as for many women their diet contains enough zinc to balance the increase in copper (except vegans/vegetarians who dont supplement), while their detox systems are strong enough (for a while unless the intake is ongoing) to maintain proper regulation.
    http://archpsyc.jamanetwork.com/article.aspx?articleid=2552796
    http://www.msn.com/en-ca/health/wel...-the-risk-of-depression/ar-BBx2gWW?li=AAggFp5

    Pyroluria generally creates a vitamin b6 and zinc deficiency depending on the severity of the problem beyond what some may typically do to fix a standard deficiency.

    ApoE4 carriers have a reduced ability to detox heavy metals, especially lead and mercury. This is because the structure of apoE4 gives it a more limited ability to bind to and remove metals from tissues within the body. Apoliprotein may help remove copper from the brain and tissues normally, and apoE4 has no copper binding cysteines, apoE3 one, and apoE2 two. ApoE4 would then greatly increase the retention of metals magnifying the potential for problems.

    "One of the effects of Xenoestrogens is to reduce the excretion rate of copper from the body. All estrogens cause copper accumulation, xenoestrogens look like estrogens to our biochemistry and hence also cause copper retention. These patients have very high copper levels." ~Dr. Igor Tabrizian This too could be an external factor that we are certainly dealing with in modern society.
     
    Last edited: Jun 8, 2018
    alkt likes this.
  4. datadragon

    datadragon Guest

    Messages:
    70
    Likes:
    76
    East Coast, USA
    This info I researched., first time posting it... Serotonin seems to be related to mood, but pleasure such as enjoyment from bonding, the high of exercise or eating chocolate, sex etc seems to be related to anandamide/oxytocin. Serotonin requires B6 and Zinc....
    https://understand-andcure-anxietya...pression.com/images/MelatoninCopperBlocks.jpg

    https://news.uci.edu/2015/10/26/lov...les-to-boost-pleasure-of-social-interactions/
    When you eat dark chocolate, running, use marijuana, or release the hormone oxytocin through sex, touch or staring into the eyes internally, they all stimulate the production of Anandamide, a motivation, pleasure and happy/bliss neurotransmitter in the brain. Oxytocin is known as the love and bonding molecule. Feelings of love ratchet up your oxytocin levels for example, which in turn dial up your bodys anandamide effects giving us that pleasure.
    When scientists stimulated oxytocin release, it increased anandamide creation in the brain. When they blocked anandamide, it also blocked the pleasure and pro social effects of oxytocin which means that oxytocin reinforces social bonding/trust and pleasure by anandamide creation. Interrupting anandamide breakdown further enhanced the pleasure of social contact, and animals treated with a drug that stops anandamide breakdown increasing it behaved as though they enjoyed spending time with their cage mates much more then animals treated with placebo.
    Anandamide (AEA) increases in the brain during and following exercise and may be mostly responsible for why exercise makes you happy. A recent animal study similarly found that anandamide might be responsible for producing the "runner's high" in mice.
    https://www.ncbi.nlm.nih.gov/pubmed/26438875
    In the late 1980s, receptors were found in the brain for THC (tetrahydrocannabinol), the primary psychoactive component in marijuana. But since THC doesnt naturally occur in the body, the presence of these receptors puzzled scientists. The mystery was solved a few years later with the discovery of arachidonylethanolamide, later called anandamide.
    Anandamide is a natural neurotransmitter produced in the brain that binds to the CB1 Cb2 THC receptors. Its been called the bliss molecule aptly named after ananda, the Sanskrit word for joy, bliss, or happiness. It is considered an endocannabinoid a substance produced in the body that binds to cannabinoid receptors and now seems to be responsible for much of the natural normal positive feelings in social interactions, bonding, touch, sex, exercise, and love.

    https://medium.com/@mary_c_biles/an...nt-and-how-to-boost-it-naturally-895cdafcf7fe

    Those who are 'extra happy' people produce less of the enzyme FAAH (fatty acid amide hydrolase) which is responsible for breaking down a chemical in the body called anandamide
    Study: Cannabis Produces the Same Pleasure as Having Sex Regularly
    Researchers from the Faculty of Medicine of the National Autonomous University of Mexico, discovered that the use of cannabis (also) activates the same receptor as sexual pleasure, CB1 and releases oxytocin and both activate dopamine, responsible for the sensation of pleasure same as intercourse. They studied how various activities provide us with pleasure, and came to the conclusion that the feelings yielded by marijuana and sex are more similar than previously thought. This pleasure is not obtained only by smoking marijuana, but with other types of consumption, such as ingestion or the application of balms. Cannabis is a potent aphrodisiac, increasing body awareness, greater concentration or an increase in climax. Marijuana just also blocks the breakdown (lessening) after the fact increasing the potency of the effect.
    https://www.dinafem.org/en/blog/cannabis-same-pleasure-sex/
    Anandamide may also be involved in increasing a protein called Brain Derived Neurotrophic Factor (BDNF). BDNF not only preserves existing brain cells, it also activates brain stem cells to convert into new neurons and effectively makes your brain grow larger, so it has potential for other benefits, as well as for a novel depression therapy.

    Copper lowers dopamine (a neurotransmitter that controls the brain’s pleasure and reward centers) and increases norepinephrine (another neurotransmitter that also functions as a stress hormone) in the brain. Imbalances in these important neurotransmitters are related to anxiety and panic disorders, depression (especially postpartum), bipolar disorder, ADHD, autism, violence, and paranoid schizophrenia."
    ~Dr. William J. Walsh, PhD, Author of Nutrient Power: Heal Your Biochemistry & Heal Your Brain

    As stress goes up (internally caused by rising copper (and other toxins), along with weakening of the adrenals and increasing amounts of bio-unavailable copper, our bodies in time become more and more oxytocin deficient. In other words, as copper toxicity builds up and the adrenals become exhausted, oxytocin levels generally drop, and the sexual arousal, recognition, trust and bonding that once existed between partners can become diminished. - Rick Fischer
     
    Last edited: Jun 8, 2018
    alkt likes this.
  5. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    So, just to complete my story, I did retest with the "low" lab and my result changed from 4 to 21 lol. The lab has not yet responded to my request for an explanation. It's pretty embarrassing really. But since the 21 is pretty close to what the "high" lab said, logic would suggest there was something wrong with the "4" result.. I now at least have some confidence in the measurement. While I'm still skeptical that it means anything, I may well consult with someone and try the supplements, as there seems to be little downside.
     
    Dominic Pukallus likes this.
  6. alkt

    alkt Senior Member

    Messages:
    323
    Likes:
    640
    uk
    I find the mention of copper very interesting because the first seven or eight years I was ill with m.e my hands and sweat frequently smelled of copper as if I had been handling lots of copper coins .
     
    Dominic Pukallus likes this.
  7. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    I got some recommendations on treatment, and while I had thought there was no harm trying, it seems the doses of B6 used by Walsh protocol practitioners are well into the range of potential B6 toxicity, particularly nerve damage. The zinc doses seem very very high as well. Thoughts welcome.
    https://ods.od.nih.gov/factsheets/VitaminB6-HealthProfessional/#h4
    NIH says 100 mg. is upper tolerable limit.
     
    Last edited: Aug 6, 2018
    alkt and Dominic Pukallus like this.
  8. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,914
    Likes:
    4,994
    Pacific Northwest
    Some of us need far more. I've been on 350mg for over a year - my labs kept saying it was too low I til we raised it that high. It's used for methylation, heme production and sphingolipid production, so some ME/CFS patients will need more than normal people.
     
    alkt likes this.
  9. Dominic Pukallus

    Dominic Pukallus Mental illness survivor with Research ambitions.

    Messages:
    22
    Likes:
    26
    Australia
    I hope this can help. I've been prescribed 200 mg pyridoxine (B6) and 50 mg pyridoxal phosphate (PLP/P5P) by a MD trained in this for almost 3 years now with nothing to show but a spectacular recovery, along with 75 mg zinc. You'd think that all the similar MDs likewise trained in this which prescribe from the tests (don't talk to me about questionnaires) about which so many seem to be skeptical would have had their licenses yanked by now if this was a real problem among those who needed it. I hope the material I've linked to previously or that linked on this website us fellow believers put up will go towards clearing up the confusion between the reality and the flim-flam. https://sites.google.com/view/nutrient-power-group/supplements/b6-and-peripheral-neuropathy
     
    alkt and Learner1 like this.
  10. Dominic Pukallus

    Dominic Pukallus Mental illness survivor with Research ambitions.

    Messages:
    22
    Likes:
    26
    Australia
    I'm glad you went through with it. This does seem to confirm my notions on the matter. Have you read any of the literature I linked to which may explain why this happened? Best of luck with consults, I can only recommend someone trained in this by the Walsh Research Institute from personal experience and my own research in the matter.
    Cheers,
    Dominic
     
    alkt likes this.
  11. Dominic Pukallus

    Dominic Pukallus Mental illness survivor with Research ambitions.

    Messages:
    22
    Likes:
    26
    Australia
    I'm not surprised, she's not trained in this and has her own nutritional approach. I suppose all I can say is because people don't understand something it's not real. That's a very familiar story.
    D
     
    alkt likes this.
  12. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    At least in the US there are only a handful of MDs practicing in this area. It's a very outer fringe. It seems to be more popular in Australia for whatever reason. I don't think there's really enough data to know whether these megadoses are entirely safe or not. I suppose that's true for lots of treatments though, not unique to pyroluria.
     
    alkt likes this.
  13. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    BTW, in one of your links it says with certain SNPs even small doses of B6 can cause neuropathy, but it doesn't say which ones. Can you elaborate?
     
    alkt likes this.
  14. Dominic Pukallus

    Dominic Pukallus Mental illness survivor with Research ambitions.

    Messages:
    22
    Likes:
    26
    Australia
    I'm unsure, it's not a problem of mine so I haven't researched it. Whichever genes code for enzymes involved in B6 processing, I can only surmise.
     
    alkt likes this.
  15. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    Dominic (or anyone else) -- do you understand the rationale for prescribing BOTH B6 and P5P, if P5P supposedly is more efficient as it's the active metabolite? I also would really like to understand why Australia seems to be the only place this approach has really caught on to any extent at all in the medical community; in America (and perhaps Canada) it seems to be a fringe thing practiced by only a handful of people nationwide (with a cultish feel to it), and seemingly noplace else.

    It would seem that in the age of the internet, it should have gained a bit more traction even though it's not a profit-maker for anyone.

    PS As an example of just how fringe, I have a doctor who is the head of a hospital-based integrative/alternative medicine program and he won't even talk to me seriously about pyroluria.
     
    Last edited: Aug 13, 2018
    alkt and Dominic Pukallus like this.
  16. junkcrap50

    junkcrap50 Senior Member

    Messages:
    295
    Likes:
    424
    That's ridiculous, how fringe can it be when Quest Labs has its own pyrole lab test? The doctor probably thinks that because there aren't perfectly designed double-blind 3 phase studies with sufficient (read:100+) population sample size for pyroluria.
     
    Last edited: Aug 13, 2018
    alkt and Dominic Pukallus like this.
  17. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    I was surprised, honestly, as I thought he would be in a position to give me a sensible and balanced view of it. I don't know why so many topics in medicine have to be so polarizing, sometimes it seems your only choices are between enthusiasts with a hammer who think everything looks like a nail, on the one hand, and reflexive mainstreamers who automatically deny anything they don't know without real consideration, on the other. The former are scary because they are going to shove a diagnosis down your throat irrespective of the facts. I've been there done that many times. The latter are scary because their closed-mindedness denies you possibly viable options.
     
    Last edited: Aug 13, 2018
    alkt and Dominic Pukallus like this.
  18. Dominic Pukallus

    Dominic Pukallus Mental illness survivor with Research ambitions.

    Messages:
    22
    Likes:
    26
    Australia
    As far as I can tell, especially from Dr Walsh's comments, it seems to be due to the fact their clinical observations have shown for some reason that some people respond better to pyridoxine, others to P5P, and even have bad reactions to either. It's still needing a lot of lab research so they hedge their bets and prescribe a combination initially which is then adjusted according to outcomes from what I can tell. Also, P5P is more expensive and unstable I gather, and taking too much pyridoxine will paradoxically inhibit conversion to P5P apparently (research I linked to on the Wiki we set up).

    This is better regarded as cutting-edge, rather than fringe I feel. It's a new frontier in the understanding of Medicine which has sadly been left unexplored by most since the 1950s in favour of drug development. Maybe the fact it's not patentable and therefore likely to be making anyone any megabucks could be a reason. It's the reason treatments are limited to what's been observed in clinical settings by (consensual) informed trial-and-error due to a lack of research funding which would really get things more precise. Thankfully there are academic scientists and clinicians working away in University settings such as Prof Julia Rucklidge at Canterbury University in New Zealand. I hope to be involved in something like that eventually.

    I suppose you only have to look at various sciencey blogs and the Wikipedia entry on this and the outdated information coupled with the mistaken interpretations from that which they contain to have an idea why this hasn't taken on more widely. I tried to address these in my own website, I'm sure I left the link somewhere previously. The reasons it can seem cultish is the clinical outcomes of this from my own experience and what I've seen from published pilot studies is far superior to anything otherwise available in terms of Medical interventions. The links are all available on previous posts.

    There is a certain feeling of impatience among proponents for the proper funding which it is felt will give confirmation to these results and eliminate some of the scorn this field is subjected to, not to mention relieving great suffering. When the dreadful 1973 report came out which exiled this to the Alternative ghetto, Dr Hoffer said he didn't take it personally but millions had been condemned to unnecessary suffering. It would seem I was of those. I'm not angry anymore, but I do have a passion. Perhaps those who've seen what's possible in the face of what looks a lot like ridicule feel the same way. Also, there may be pushback from those of any affiliation who feel threatened by the seeming efficacy of treatments as competition to their own revenue.

    In Australia we liked to call ourselves the "lucky country" because of resource wealth which then got changed to the "clever country" in the quest to gear up to the information economy. Perhaps the effect you mention may be a combination of both of these. Australians do pride themselves on having a bit of an independent mind. It also seems to be taking off in Scandinavia. I can only thank the efforts of the Bio-Balance Health Australia people who got the first MDs involved in the 80s and started the snowball effect from which I ended up with such a great treating physician of my own who brought me back to the world. Yeah, it can get a bit cultish I suppose. http://www.biobalance.org.au/about
     
    Last edited: Aug 15, 2018
    pspa123 likes this.
  19. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    Thanks for all that, very cogent. Speaking of research, I recently found this statement on one of your Australian practitioner's websites, suggesting that recent researchers believe 40 is a more accurate test threshold (in which case at around 20 I don't have it at all, makes my head spin).

    "Previously Australian labs reported any result >15 as elevated pyrroles. There has been a lot of research recently into benchmarking Pyrrole results and the new criteria (which I agree with based on clinic experience) is a positive result for Pyroluria is >40."
    http://www.truefoodsnutrition.com.au/pyroluria-stress-disorder/

     
    Dominic Pukallus likes this.
  20. pspa123

    pspa123

    Messages:
    72
    Likes:
    62
    One reason it seems "cultish" to me, perhaps too strong a word, is that -- as a poster way back in this thread observed -- many if not most of the websites about this condition just seem to be robotic cut and paste jobs repeating the same gospel.
     

See more popular forum discussions.

Share This Page