pyroluria but not hell

My Pyroluria Story – A Journey From Copper Toxicity To Tranquility

The purpose of this page is in both the expression of my own personal Pyroluria story, and eventually in the creation of a kind of “all in one resource page on Pyroluria” which I really hope can help many find the answers they are looking for regarding overcoming this difficult, but manageable blood disorder which has so many trickle down affects on physical, mental and emotional health, and is still barely known about considering it's dramatic health consequences.

I hope to eventually make this page contain pretty much everything you need to know about Pyroluria (also known as kryptopyrroluria amongst other names). This webpage will be updated regularly – think of it as a constantly evolving guide and journal of someone who's actually dealing with this health issue themselves.

I'll be posting my experience with Pyroluria (or “Pyro” as I've affectionately starting referring to it – the bigger your sense of humour about such things the better I find), including the common symptoms and how it affects me day to day, and also sharing what's working for me, how the supplement regimes seem to be changing things (hopefully drastically for the better 🙂 )

Note as a little disclaimer again, as I often state on this website, I am not a Medical Doctor, nor is any of the information on healthvibed.com regarding supplement choices, etc, meant to be taken as medical advice. It's all purely informational, you take actions at your own risk. Sorry, gotta pop that in there.

Pyroluria – A Little Of My Story

(Oldest Updates At The Top)

Ongoing Note: Hopefully the latest update that you're reading is what I can happily call my Pyroluria Success Story. If it's not a success story yet, then I guarantee it will be, it's only a matter of time (there's that possibly slightly naive mental optimism I mention below, but I'm just remaining optimistic, as it's really a vital part of recovery)

Journal Update – 28th April, 2016

So roughly, 3 weeks ago today, I found out a BIG piece of the puzzle regarding exactly why I feel like my mind and body have been going crazy the past 12-15 months, and why throughout my life I've experienced bouts with varying degrees of anxiety and depression for no apparent reason.

I have never really told many people that (that I truly have experienced anxiety and depression a lot in my life), I guess on some level I was in denial, and on another level I was ashamed that I couldn't just “snap myself out of it” like I had always (maybe a little naively to be honest, now I see things differently) believed people could do.

I have always liked to think of myself as a positive thinker, despite the fact that I obviously I was struggling on some level, to some degree, without knowing why. I do want to add here though, I still definitely believe in the power of attitude, and it's ability to affect or at least contribute to outcomes. We're starting to see more science on this topic as we delve deeper into quantum physics. Anyway, getting sidetracked, that's another rant for another page…

So I was told by my good Dr to get a lab test done “for my Pyrroles”. Of course at this point, I had no clue what she was talking about, but trusting in her judgement I of course agreed. My Doctor has proven in the past 8 months since I've been seeing her on my return from overseas, that she really gets it, and actually cares. She's a naturopathic Dr, with experience in quite a few fields, including herbals, etc – and in fact is even studying QUANTUM PHYSICS right now, I guess for um, just the fun of it I suppose – I like that my Dr studies quantum physics in her spare time, it make me feel like I'm in good hands 🙂

Anyway, I did the test, I had to piss in a tube as per usual, but this time I had to wrap my pee sample tube in aluminium foil afterwards, This is because the pyrroles (otherwise known as hydroxyhemopyrrolin-2-one, which we'll sometimes refer to as just HPL to keep it simple) are apparently destroyed by any contact with UV light, and to get an accurate reading, we need to avoid this at all costs.

So 2 weeks later, my pyroluria tests results are in with my Doctor, and it turns out that I do in fact have a higher than average count of pyrroles in my blood. Not that high according to my Dr, but because I have other health issues going on as well (leaky gut, blasto.hominis gut infection being the main concerns) and she says i'm the “naturally sensitive” type, this could be a big chunk of what's creating my symptoms.

when i found out i had pyroluria

So all this has happened within the last month. So apart from thinking I was going through a LOT already with the gut infection, leaky gut, gut dysbiosis, this gets crammed on top of the pile. Now, my reaction was actually that it was a positive thing. At least that's how I've been trying to mentally process the news. I mean logically it's absolutely a very positive thing to know what you're dealing with, and it's likely that this has been something that's been affecting me to some level under the radar so to speak for years, maybe even my whole life.

It's very likely that the intense stress I went through in 2015 (business, financial and family stuff to be vague) basically piled up to the point where my Zinc levels were devastated, and my copper levels were just way to high, which means you're going to feel a little crazy to say the least (we'll look at the copper connection to pyroluria later on in this page – but basically Zinc is what balances out Copper, and too much Copper will make you feel really anxious and on edge, amongst other things).

So I'm about 2 weeks into starting the Pyroluria supplement regime (I discuss the specifics of what I'm doing in that section below), and it's still early days, but I'm pretty positive that I'm really on the right track with all this now, and that this is going to be a good chunk of what's been making me feel so weird the past several months. So mixed feelings would probably be a good way to sum up the way I feel about this whole ordeal right now.

Stay tuned, I'll be updating this page regularly as I see shifts, and based on what I notice from my supplementation experiments. Also Pyroluria is definitely connected to some of the other issues that I'm facing. I've found several people on the internet who have had Pyroluria and Blastocyst Hominis as well, and my Doctor even commented that this seems to be a common thread, and they are somehow often related. I would assume at this point, that the Pryoluria Disorder has an affect of knocking down the immune system and protection against gut infections like Blasto.

Journal Update – 2nd June, 2016

So far I'm  not experiencing any significant shifts in symptoms, but I have made some important discoveries regarding treatment, and some new changes that I believe should help, hence the update.

Firstly, it appears that since starting the supplement protocol, I may not have been actually receiving the benefits of all the copious amounts of Vitamin B6 I've been taking in the form of Pyridoxal-5-Phosphate (often just know as P5P). This is due to the fact that the supplement that I was taking, Country Life brand P5P is not in a form that's enteric coated. This basically means that I most likely was not actually absorbing a large percentage of the B6 I was taking to boost my levels back up, in answer to the depleting effects of the pyro.

This is the problem with partially going on this journey without full expert guidance at my side. My Doctor is great in many ways, and far better than most I've encountered, but obviously her knowledge is limited (or she just failed to mention it, which is actually worse in my opinion), as she never mentioned any of these things. She didn't even tell me that P5P was the better version of B6 to take, as the other version of B6 supplementation is often poorly absorbed. Anyway you live and you learn. I've just ordered some Solgar P5P, which IS enteric coated, and hopefully that's been a big reason why I haven't seen much change so far in my treatment thus far.

On a similar vein with the tweaking of supplementation, I've discovered that according to Dr Mensah, it's actually detrimental for Pyroluria sufferers to be taking any supplemental levels of Omega 3s. According to him, the normally anti inflammatory benefits of taking Omega 3s for non Pyroluria sufferers are actually reversed, and healing progress can be delayed by taking them.

Paradoxically, taking Omega 6s which are usually what creates more inflammation, actually has an anti inflammatory effect for those of us suffering from Pyroluria. For the last 9 months or so, at my Doctor's advice (yes, I'm seeking an expert on Pyroluria now, as it's obviously needed) I've been supplementing with rather high doses of Omega 3s.

Dr Mensah's presentation in this video below (which is GREAT by the way, and I highly recommend you watch it if you or anyone close to you suffers from this disorder). The reference to Omega 3s is at around 1:27:00 in (1 hour, 27 mins)

Other recent news – I've started making more of an effort to exercise regularly despite feeling very burnt out very quickly whilst doing so due to adrenal fatigue (a common related condition for those suffering from pyroluria). It's important in my condition not to push myself very hard with exercise, so only gentle forms such as walking, slow riding a bike, Tai Chi, Yoga and similar are really beneficial right now. It's very important for those who have adrenal fatigue, to not overwork themselves, as this will just further deplete the adrenal system, and further delay proper functioning in the future.

So I've just started to make an effort to AT LEAST walk twice a day for 15-20 mins, ideally in nature as opposed to next to a road with traffic, but sometimes I need to get things done in my local town, etc, so walking to do that serves a dual purpose.

Journal Update – 15th August, 2016

I found out this week that aside from having an above average Pyrrole count from the previous test, I also have a known issue with what's called my methylation pathway. I will write a lot more about methylation in the near future on this website, but for now, suffice to say that methylation plays a very key role in one's ability to correctly synthesize neurotransmitters such as norepinephrine and seretonin.

I was discovered to be an under methylator via a simple blood test which checks for histamine levels. If you have elevated levels of blood histamine, such as I do, then it's a very likely sign that you are an under-methylator and you're going to need some targeted nutrient therapy to correct this genetic mutation.

nutrient-power-methylation-statusThis discovery came after finding a new Doctor in my local area (2 hours away by train, in Sydney Australia) who's trained by  Dr William Walsh. Walsh is well known as an expert in the area of methylation dysfunction, as well as Pyrrole disorder and other similar types of disorders and in correcting these imbalances using simple blood and urine testing along with targeted nutritional therapy based on the results of those tests. If you have Pyroluria, then  it's very likely that you are also an under methylator.

In any case, I highly recommend that basically anyone who has had issues with ongoing anxiety or depression in their life should look into both methylation status and mutations of MTHFR. William Walsh's book Nutrient Power is a great place to start learning about this stuff.

Also, here's a very good video that serves as an excellent introduction to his work:

 

Journal Update – 14th September, 2016

So my anxiety has been tremendously high the past few weeks. I am now about 4 weeks into the methylation treatment specifically focused on my issues with undermethylation as per William Walsh's work described in a bit more detail above in my last journal entry. The OCD type thinking has been really bad, as this is an expression of the general biochemical anxiety that I'm experiencing with everything I have going on right now with my body.

I don't know why it's been worse recently, but I remain hopeful that I will make some solid progress soon, it's certainly about time!

2 big keys that I am working on at the moment are:

1) Implementing a lowered and anti histamine diet. I'm following the work of The Low Histamine Chef, and kind of tweaking it to make up my own specific diet, with the general approach being to stop eating protein to a large degree as it largely increases histamine from my current understanding, and also dropping certain fruits and vegetables for the same reason. Also no more leftovers. It will take me a while to figure it out, but I think this will make a big difference over time, as my whole blood histamine test revealed very high histamine levels, which is how we worked out that I'm an undermethylator.

So it certainly can't hurt to lower my overall histamine levels via dietary changes over time. Also looking into supplementing with Diamine Oxidase, but that's something I'll go into more at a later date…

2) Grounding more in nature, and AGAIN reducing EMF exposure. This is one that I really struggle with, as I've grown up with the habit of “plugging in” to my technology to both “work” and escape via movies, playing chess online and other essentially life wasting foolery.

However this morning after checking emails and attending to some business related stuff, I noticed that my anxiety levels were about a 9/10. I then went for a walk to clear my mind, and eventually ended up standing in a small grassy clearing not far from where I live with my shoes and socks off, and just with my bare feet on the wet grass. Within 30 minutes my anxiety levels were down to a 4-5/10 and I felt much better. I also noted that my brain fog (which is still a very much constant daily malady was lessened after this grounding period)

This is not the first time I have noticed this, but this experience served as a great reminder to play around with this one more, and really see how powerful it is on my state of health both body and mind. I will probably end up testing this using the heartmath emwave2, and seeing how it consistently impacts my heart rate variability scores over time.

Oh yeah and I got a new health advisor, John Brisson at fixyourgut.com, really knowledgeable dude. I also got the ball rolling and finally ordered my 23andme.com genetic data. Should have that to play with in about 6-8 weeks, and will be posting more about my experience with that service in the future.

That's it for now, onwards and upwards always!

What Exactly Is Pyroluria Disorder and How Does It Work?

For a very brief intro description: Pyroluria Disorder is basically a genetic chemical imbalance which relates to the amounts of Pyrroles your body is creating from its synthesis of hemoglobin. Pyrroles are basically a useless by-product of the synthesis process, all human beings create some level of Pyrroles, but the main problem with them being at higher levels than normal in the body, in simplistic terms, is that the bind to extremely important minerals, vitamins and nutrients, and after binding with these, the combined product is then removed from your body via urination (hence why the test is based on a specific type of urine test, to detect the pyrrole levels).

By the way, other names for Pyroluria include:

  • Kryptopyrroluria
  • Hemepyrrole
  • Pyrolle Disorder
  • Pyrrole Disorder (slightly different spelling)
  • Kryptopyrrole
  • Pyrroluria
  • Mauve Factor

The main vital substances in the body that the kryptopyrroles bind with are Zinc, Magnesium, and the Vitamin B6. As you may know by now in your research, these minerals and vitamin B6 play a crucial role in many processes in the body, and while affecting many different areas, specifically affect peoples mental health. High pyrroles have been associated with mental health conditions from depression and anxiety to Schizophrenia.

red-blood-cells swimming-in-a-blood-vain

Red blood cells in a blood vessel, rather pretty really.

Because I'm not a Doctor or scientist (yet, I'm starting to consider it…), just a lowly sufferer, I'm not going to try and explain myself exactly how the science of this disorder works, so I'll just link out here to a few of the better resources that I've found in terms of describing what it is, and how it affects people generally speaking.

These are some of the best descriptive pages on all the scientific related information regarding Pyrrole Disorder from my research thus far:

(pages each open up in separate new tabs so you can refer back to this page)

http://www.naturalhealthprotocol.com/pyroluria.html
http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_Hide_In_Closet.htm#pyroluria

The Symptoms That I Experience Regularly Associated With Pryoluria

So before I list out my symptoms, I should state here that I have a few health things going on right now, so it's almost impossible for me to know exactly the source of each symptom, although I have no doubt in my mind that the high HPL or Pyrolle count in my blood is definitely a big contributor to my symptoms.

“Anxiety”

I'm putting this in quotes because I feel that it's such an umbrella term, and with anxiety (at least for me in any case) I find that it has so many offshoots, and symptoms of its own. Here's a few of the things I associated with anxiety that I experience quite frequently at the moment of writing this:

  • Racing mind
  • Catastrophizing thoughts
  • Obsessive thinking loops (these 3 are all kind of related and work together)
  • Social Anxiety and Self Consciousness around certain people
  • Occasional increased heart rate
  • Feeling so stressed that I feel my brain is going to explode (pressure in head from overthinking)
  • Depression of it's own, that comes with this kind of constant anxiety
Depression

This one has always been a bit of a dark closet for me, pardon the pun! I hesitate somewhat in posting this, as I know some of those closest to me, and some of those who's respect I desire and value in my own personal life with read this at some point, and in the past I've found it very difficult, if not straight up impossible to share this with others. I guess I've had my own feelings of shame on this issue to get past…

But no more hiding. After all, there is nothing to be ashamed of, and I choose to consciously stand for the elimination of the unjust stigma that exists in our culture towards mental illness. It's time we started to see these things in a way that shows respect to the sufferer, and acknowledges that things that are so common in our society, like anxiety disorders, depression, etc, are very often simply symptoms of underlying health issues, and in no way a reflection of the value of a person. Certainly not a weakness of will power, as is quite often presumed, even subconsciously due to societal  programming up until this point.

So here's my truth.

I've struggled with depression on and off for much of my life. So when I found out that I had elevated Pyrroles, that definitely explained a lot. In fact all the symptoms made a lot more sense when I got the HPL count back. Depression for me has been one of the most challenging aspects of dealing with Pyroluria. There's not really much else to say about it other than that, apart from maybe I guess the type of depression, as there are different general experiences with which society labels the general idea of “depression”.

For me, I would say it's generally just been a feeling of emotional dullness, lack of good feelings, and a rather bleak outlook mentally. So bipolar or anything like that would NOT be how I would describe my experience with the depression side of having this biochemical imbalance of Kryptopyrroluria.

I believe my experience of depression to be largely biochemical, and am quite confident that as I correct my nutritional deficiencies I will begin to experience these types of thoughts and feelings less and less, and hopefully barely at all when I have balanced myself properly biochemically via diet, lifestyle, and supplements.

Understanding oneself biochemically and genetically is a really important part of this journey, and I think it's the key to being able to learn how to correct these issues. Without knowledge of what was not working and why, how can we hope to make progress. That's why I'm a big advocate of using genetic testing via services like 23andme, etc. Knowledge acted upon is power for change.

Fatigue

It's a commonly known associated condition that one will experience some level of adrenal fatigue from all the months and years of being too tightly wound up and anxious from as a result of the biochemical deficiencies that Kryptopyrroluria creates within the various affected systems of the body.

I'm by no means an expert on this subject, but there are apparently 4 states of adrenal fatigue, and pyroluria sufferers tend to be in either stage 3 or stage 4 (at least until they start the process of healing), depending on how long they've been suffering, how depleted they are, and whether or not they know about it and have started a supplement and lifestyle treatment plan.

Personally I would say that I'm at a stage 3, and sometimes in the past year it felt like I was heading into stage 4, but apparently that is the level where you simply cannot get out of bed or do anything at all, and I've always had SOME energy throughout my time since I started getting much worse within the past 18 months. We'll talk a bit more about adrenal fatigue later on down the page, as it's a really big part of this I feel, and needs to be understood and managed if you're going to have any chance of getting better anytime soon.

Super Low Stress Tolerance

This one has been another biggie for me. I believe from my research so far, that the low levels of zinc, and therefore out of balance and heightened copper levels will basically dissolve your ability to cope with stress at a normal level. How does this manifest in my life for example? Getting super stressed about nothing at all, all the time.

Specifics, okay, if I feel rushed at all, like if there's a bus I'm trying to catch up town, and I haven't left myself enough time to get there without rushing, I'll be WAAAY more panicky than in the past (well maybe not panicky, but I'll be stressed over it) and it won't even be a bus to get to any important meeting or anything, that's just an example of how poor my stress tolerance is at the moment. And there's no reasoning and logical talking to oneself out of this.

It's not simply something I can therapize away either, although self-kindness helps a lot I've found. Ultimately, It feels as if there's an alarm going off in my biochemistry if you will, and it's making me stressed out all the time over nothing. Not fun, but it will get better, I'll find a way.

Some Common Questions About Pyroluria

Here are both some of the regular questions that I see other people asking about this condition, as well as some of the questions that came up for me on my pyro journey.

Will I Ever Get Back To “Normal”?

From what I understand myself, it's completely possible and achievable to live a pretty much normal life despite having Pyroluria. If you work on getting the supplementation, and bringing your depleted levels of Zn, B6 and MG (and the rest of the cofactors) up to a good level, you SHOULD start to feel pretty normal, have good energy again, and have a better tolerance to stress.

However, this comes with a caveat I suppose, if you're a Pyroluria sufferer, you will likely always be someone who has to keep a tabs on themselves, and make sure you're looking after yourself to the level of your needs.

For someone in his early 30s at the time of finding this out, this has meant coming to terms with the fact that my days of partying hard 2-4 nights a week are probably not going to come around again any time soon.

Doesn't mean I can never go out in the night life again, or drink SOME alcohol (when things are back under much better control in terms of my nutrient levels, and my other health issues are sorted out – leaky gut, etc)

WORK IN PROGRESS.. UPDATES COMING SOON 🙂

The Copper Connection

The depletion of zinc in the body automatically means that pyroluric individuals will have higher amounts of copper in the body. Copper at levels higher than are normal and healthy is absolutely catastrophic to mental health, and is likely a large cause of all the possible mental health issues associated with Pyroluria.

There is so much that can be said when it comes to copper toxicity, and due to my lack of qualified knowledge on the finer details on this particular part of the pyroluria experience, I suggest you look at this page created by Rich Fischer, as it's a HUGE and vital resource on the full understanding of copper toxicity and the disastrous effects it has on health.

Adrenal Fatigue And Pyroluria

Those who have Pyroluria will commonly also get the joys of adrenal fatigue as a little side bonus. (more on this specific aspect of this will be written about soon, as you can see there's a lot to cover here 🙂 )

Do You Have Pyroluria?
Are There Any Good Pyroluria Questionnaire or Quiz Pages

Ultimately the only way to know if you are pyroluric is to actually get the urine test, as that will test the active pyrroles in your urine, which is the important factor for determining whether or not you are suffering from this condition to any degree.

The test is usually done by specific labs, and you'll need to get the advice from your Doctor as to where to get the test done. Personally I was able to get my test done reasonably locally, and the cost was about $80 AUD out of my own pocket with the rest being covered by the medical system.

Aside from that, you can try and figure out if some of the symptoms from an extensive list such as this one here match what you're dealing with. But personally I wouldn't bother with this, do you want to KNOW for a fact that you do or do not have Pyroluria? If you answered yes, then a urine test is the only way to go.

Pyroluria Treatment

The treatment of Pyroluria (thank god it's treatable is all I can say…) involves boosting your levels of the depleted Vitamins and Minerals with the use of nutritional supplements. So the big ones that everyone who's done a tiny bit of research on this blood disorder will have heard about already are are Zinc (Solgar's Picolinate is good, found here), Vitamin B6 and Magnesium, but there are other co-factors and nutrients that are important to supplement with too.

This area of information really needs to be something that you validate with your own medical professional before taking action, but I will post below my current supplement protocol for managing Pyroluria with additional notes that are important if you are going to be using any of the same supplements.

My Pyroluria Supplement Protocol

This will vary depending on the professional advice that you're getting, but my current personal supplementation protocol is the following:

NOTE ON SUPPLEMENTS – I'M PERSONALLY GOING TO BE SWITCHING OVER TO A PRECAPSULED SUPPLEMENT AM/PM PLAN FROM A COMPOUNDING CHEMIST VERY SOON. BELOW IS STILL RELEVANT FOR THOSE NOT USING A COMPOUNDING CHEMIST.

2ND IMPORTANT NOTE ON SUPPLEMENTS – After finding out that Pyroluria is only a small fraction of the genetic/epigenetic causes of my symptoms (And this is the case for many of us in this group it seems), the only 3 supplements that I'd say are likely to help most people are a good Zinc Picolinate (I used to think Citrate was better, but my William Walsh trained Doc has me on the former, so I'm going with that for now), a decent Magnesium, I am currently using this one, but working on an even better source as you want to avoid Magnesium Oxide from what I've been learning and Glycinate is cut with it according to someone who's helping me, and a mix of P5P and the other form of B6 (PyridoxineSolgar's version here on amazon).

PLEASE GET YOUR DOCTORS ADVICE ON SUPPLEMENT AMOUNTS AND BRANDS, THIS IS JUST WHAT I AM USING BASED ON MY OWN KNOWLEDGE, YOU ARE RESPONSIBLE FOR YOUR OWN HEALTH.

If you are Pyroluriac at all, you will want to look into your methylation status, and see if you are an undermethylator like me which means it's really important to start supplementing methianine, and others, Probably also a good idea to go get your 23andme.com raw data, and have someone like Dr Tim Jackson help you figure out what other genetic weaknesses you may be dealing with (we all have them either here or there, Dr Mensah states in the video above that no one walking on the earth has less than 1000 genetic mutations – I'm paraphrasing him here)

  • Borage Oil 240mg – with breakfast and dinner (currently using  this one from Jarrow formulas) – this supplement is high in GLA or gamma linoleic acid, which is one of the things that will be low if you're suffering from Pyro
  • B6 in the form of BOTH P5P Pyridoxine HCL – currently  tweaking this, but I take 100mg of each form with breakfast (Solgar brand)
  • Zinc Citrate – My doctor recommends taking this with dinner – was taking 90mg, brought it down to 70mg per day just recently after getting my plasma zinc tested and finding it's doing pretty well.
  • Ester C 1000mg – breakfast, lunch and dinner (currently using this version from Solgar)
  • Biotin
  • IMPORTANT NOTE on Manganese which some treatment plans include in their Pyroluria treatment supplement stack, you will want to get tested for your methylation status before taking manganese, as under methylators such as myself will react badly to this supplement and it will delay progress)
  • IMPORTANT NOTE on Pantothenic Acid – same deal as with Manganese, I used to supplement this, but avoid it now as it's another one bad for us under methylators.

Dietary Considerations For Pyroluria Sufferers

You've no doubt already heard that minimizing sugar, white and refined flour products, alcohol, and processed foods is generally a good idea, well this is especially true if you are suffering from Pyroluria. You want a diet that's going to minimize inflammation, and allow your body to normalize and heal as quickly and painlessly as possible.

Some people will opt for the very popular Paleo diet, or something similar, I personally decided to go with the Specific Carbohydrate Diet, due to the fact that it meets all the considerations of the Paleo diet, but it's also designed to correct and balance the intestinal flora, and is a great choice if you have any kind of gut issues.

Personally at the time of writing this I'm also dealing with a gut dysbiosis issue, a gut parasite, and almost definitely leaky gut in addition. Pyroluria sufferers often have multiple issues that need to be addressed, because this is a disorder that affects many systems in the body.

Lifestyle Factors 

It's no doubt that you will have to tone down your lifestyle to account for having Pyroluria, especially if you're used to living a bit of an excitable and outgoing existence. Personally a year or so before writing this, I was going out with my buddies on the town 2 nights a week, having big nights, and drinking a lot of alcohol. This lifestyle was partially a causative factor in my system becoming so overly stressed that I had to take a massive time out to reset, and figure out my personal health issues (one of them being pyro).

Most likely if you're suffering from Pyroluria, then as I've talked about elsewhere on this page, you're going to have adrenal issues to heal up, to some level or another. This means that you basically need to avoid over stimulation. I suggest you spend some additional time to research this area a lot more thoroughly, as I'm not going to go heavily into it here on this page.

The most basic things that I can mention in terms of lifestyle factors are:

  • Good sleeping routines, and getting enough sleep (aim for too much as opposed to not enough) – I personally try to get about 8-9 hours of sleep – I'm still making progress in this area, Insomnia was a big problem for me for many months, but I've come a long way since then.
  • Cut out all caffeine and other stimulants – as I mentioned, you need to go into “adrenal repair mode” and so that means really taking it easy, being really gentle on your body, and basically the opposite of a high stimulation lifestyle, and this included what you put in your body (caffeine from coffee and other sources being one of the main proponents)
  • Regular but gentle exercise – you still need to be active, lying on a couch or sitting on your ass all day is actually going to be counter productive. The body was designed to move, and you need to live true to that. That being said, we're aiming for gentle movements, things like walks in nature, slow easy bike riding, Qi Gong or Tai Chi, easy and non-strenuous Yoga movements and similar are a good idea
  • Minimize external conflict – that means stop arguing with people, walk away if someone wants to have a verbal fist fight, and have no qualms about straight up ditching toxic or even consistently stressful relationships. I personally had to end my relationship with my Father, as his conduct was consistently and unjustly causing a lot of emotional friction and disruption in my life – might sound harsh, but in these cases you have to listen to your body sometimes, and in my circumstance (at least for the time being) it was the only way to healthily move forward. 
  • Minimize internal conflict – this is a hard one, and will probably require a lot of persistence in changing old ways of behaving and doing things. I'm talking about how you relate to yourself mainly, how you deal with negative thoughts, and other internal stressors that come up for all of us at times. This is perceived stress, and it's just as big a deal in terms of your health and recovery as “objective stress”. Because when it comes to stress, it's all about perception, and if you perceive it as unhealthy or negative, then it will probably be contributing to your ill health. Keep in mind with this point, that no one is perfect, we are all learning, and you're never going to be able (at least in my humble opinion) have absolutely zero internal conflict, as to some degree I believe it's a part of being human.
What's Your Experience With Pyroluria 

I think it's fairly challenging for anyone who has the condition of Pyroluria. I also really believe that it helps sufferers to talk about and share their experiences with this condition and how it affects them.

what-about-youSo please share your story with us, and join in the discussion. I know that if it wasn't for the kindness of others who came before me on the journey through (and hopefully away from) suffering from the multitude of symptoms that can come from having Pyroluria, I would not be nearly as able to cope with it as am.

Sounds cheesy when I write it here, but seriously, you're not alone, and it's absolutely okay to be a ball of stress over absolutely nothing, that's what low zinc and B6 does to us.

I would love to hear your experience with this so far, whether or not you guess that you or someone you are close to may be suffering from this, you've just received a diagnosis, or you are well versed on the challenges of this journey. Please partake by commenting below.

Please share our content if you find it useful!
Nick Earl

About The Author - Founder at Healthvibed.com, Nick is passionate about learning and implementing all information related to achieving optimum health.

He's since made it his mission to learn, live and share these principles, many of which you can find on this blog.

Read more of Nick's personal story here, as well as our mission here on this site, here.

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Carolyn Gray - last year

The site is very informative. Thanks for sharing your story!

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    Nick Earl - last year

    No problem at all Carolyn! You’ve been an amazing support, and I’ll be linking to your Facebook support group in the resources. I suggest all diagnosed with above average or higher pyrrole counts to look at that page. It’s here as well for convenience sake:

    https://www.facebook.com/groups/pyroluriaforfamilies/

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Amy - last year

Hello, i read your blog occasionally and i own a similar one and
i was just wondering if you get a lot of spam remarks? If so how
do you protect against it, any plugin or anything you can suggest?
I get so much lately it’s driving me crazy so any support is very much appreciated.

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    Nick Earl - last year

    Hi Amy,

    What’s your blog? I’d love to see it? can you link here for me? if it’s relevant I’ll leave the link up.

    Akismet is your best option. I’m just being lazy and not installing the paid version yet, but I will soon.

    Cheers

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Lucy - 9 months ago

Wow so glad I found this site! I’ve suspected adrenal problems for years really. I also just tested positive for Pyroluria (again – no surprises!). I actually took 12 months out of my very stressful job as a human rights lawyer but then the doing nothing gave me depression, which made the anxiety worse, which taxed the adrenals even more!
I am now back at work part time but becoming exhausted very quickly. How do you go about healing yourself with a western lifestyle? Should I think about changing careers to something less fast-paced? The stress and work also means I rely more on caffeine and sugar (and nicotine) to pick me up. I have a daily meditation practice and try and exercise and get sunlight when I can but feel that I am a bit of a crossroads with my career and am wondering if I will ever be able to heal properly in a job like this.
Any tips you have in relation to this would be helpful! I really want to get better as I have a lot of mental health issues which are obviously connected to the Pyroluria and I’m frustrated with having sub par mental and physical health. Thanks

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    Nick Earl - 9 months ago

    Hi Lucy,

    Firstly, as I state many times on this site, and it has to be said. I’m not a Doctor in any shape or form, so always get professional advice.

    That being said, I can share my experience of what’s helped me progress.

    1) genetic testing done with 23andme.com and then running it through livewello. See my latest article on that here:

    http://healthvibed.com/live-wello-genetic-analysis-reporting/

    2) Finding someone who gets genetics, look for a good Dr who understands these things along with methylation, Pyroluria, etc. checkout functionalmedicine.org maybe? (you’ll need someone to help you interpret your genetic results)

    3) learn how to deeply relax. Most people say meditation works. Personally I use something called “letting go” or “releasing” along with some concepts from ACT or acceptance and commitment therapy – more information on releasing here: http://sedonamethod.com/

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      Lucy - 9 months ago

      Thanks Sean – I found ACT recently and I LOVE it! I met with a Mindfulness coach in Bali and she leant me Russ Harris’ book the Happiness Trap and it’s my new bible.

      Do you know any good Drs or practitioners in Melbourne by any chance? And also, what is the goal with the genetic testing?

      Thanks,

      Lucy

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Nick Earl - 9 months ago

Hey Lucy,

Please, call me Nick haha. Nice, Russ Harris’s work is a gold mine. Very helpful for many people! I suggest you join the group here and ask about good practitioners who know about methylation, pyroluria, etc:

https://www.facebook.com/groups/pyroluriaforfamilies/

The goal is to know your own personal genetic mutations (known as SNPs – which we all have), so you create a customized treatment plan based on your specific genetic weaknesses, etc.

Otherwise you’re shooting in the dark in comparison. That being said, testing is not everything, but it’s a powerful tool used in the right way.

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    Lucy - 9 months ago

    Sorry Nick! Ha ha I am going to blame the pyroluria and anxiety on missing that one. My brain so the link above (sedonamethod) and somehow took Sean out of that!

    Yeah I have a great integrative medicine GP but she’s based in Qld and is very busy. I am about to start a pyroluria primer but keen to learn more about my methelation and copper status as everything I’ve read on pyroluria mentions copper toxicity. God it is such a minefield to navigate sometimes I feel I need about 5 degrees.

    I’m sorry to hear about your recent anxiety, if it’s any consolation mine has been through the roof lately. I work in a very stressful job and I don’t know how much longer I can keep going without my body entirely crapping out on me. Adrenals have basically given up I think, haven’t menstruated in nearly a year, feel like my body is slowly shutting down normal processes.

    Best of luck to you and again thanks so much for this article. It is so helpful to read other peoples’ personal stories rather than just reading the same info over and over again online.

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Nick Earl - 9 months ago

Hey! Yeah, with the help from your Doctor, I would definitely get your methylation status checked before you take too many supplements for the Pyroluria, because some of them will work against each other (for example Manganese, often part of a Pyroluria supplement program, is really bad for undermethylators like myself).

You can find a Walsh trained Dr in Australia here:

http://www.biobalance.org.au/patients/find-practitioners

I know, you have to learn a lot in this position, just try be patient and good to yourself, that’s the best you can do in my experience.

Good luck, and keep me posted! 🙂

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Sarie - 7 months ago

Can you give me more information about the compounding chemist that youre using and what supplements you able to combine?

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    Nick Earl - 7 months ago

    Hi Sarie, because this is a highly personalized process based on your particular biology/genetics, I would rather tell you to find a good practitioner, as I’m not in a position to tell you what supplements to take. I can say in general most Pyroluriacs need more Zinc and Magnesium for sure, and almost always more B6, but yeah, you really need to get professional advice. Where are you based? I used Kingsway Compounding, based in Sydney Australia.

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Rach - 6 months ago

Hello, Nick!

I hope this note finds you well! Thank you so much for sharing your journey with Pyro. I just found out three weeks ago that I have this as well. It’s been hard at times to wrap my head around this, but I am very thankful that it’s so treatable. I live in the States and got a consultation with Dr. Mensah, who told me I’d be a new person in 6 months/one years time. One piece of the puzzle for me was diet, and I am so grateful to you for sharing what you’re doing in regards to that.
Thank you so much for writing this content — it’s truly so helpful and inspiring. 🙂

In good health,

Rachel

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    Nick Earl - 6 months ago

    Hi Rach!

    Happy that you found it helpful! For me, Pyroluria has only been one small piece of the puzzle, but I hope that for you it’s most of it, and you feel much better soon! keep us posted on your progress!

    Nick

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tanya - 6 months ago

who is your doctor in sydney that ran the pyrole test? Thanks

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    Nick Earl - 6 months ago

    Hi Tanya,

    Originally it was a local Dr here in the Blue Mountains, but now I’m seeing Dr John Criticos who’s based in Marrickville, Sydney. Most open minded Doctors will be happy to order the test for you. Criticos is good as he understands methylation issues, etc, which are quite often coupled with Pyroluria too.

    Best of luck!

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Alice Klein - a few months ago

I have only just skimmed your article– because I’m too sick, too exhausted, too anxious, and fill in the blank ____. But I recently have been tested for copper, zinc, KPUs. My doctor has put me on a regimen and she’s using the program from Walsh (& there was another guy, Pfeiffer?)– she went to a seminar. I tested way high in copper, very low zinc, and high KPU, though not awful. I’m just on week 4, slowly upping the doses of zinc. Also taking P5P, B6, and a few other things that are part of this: molybdenum and manganese. … I’ve been the P5P/zinc route before, because over the years my KPU has been high. But nothing came of it. This was with another doctor, who treats me for CFS and chronic Lyme. Anyway, I’m hopeful this time, but I was told it could take quite a while before any effects are felt. … My doctor also spoke about methylation, as did my previous doctor. I’m just assuming that there’s a problem there. Both recommended doing the 23 & Me. But for some reason I feel nervous about that. I’m afraid i’ll find out things I don’t want to know.

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    wolf max - last month

    alice, take the red pill, go through the looking glass, knowledge is power, as nick said, supplementing without knowing your SNPs/mutations means you could be screwing another equation that you didn’t know about, it also clues you into what rx and foods may cause you grief, that we tend not to be aware of. so just do it! all the smart kids are doing it! wolf

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Airlia - a few months ago

I stumbled upon this blog and I do realize that it is quite old and certainly you have found some help there are still people reading this on the internet and I wanted to point something out. If one does have pyroluria, the absolute worst thing you could ever do is cut out meat/protein.

This is a huge problem when people self-diagnose and find information on the internet or in self-help books. I realize you said that you have a histamine issue and that is why you changed your diet, but not considering how everything affects the entire body. I know it is difficult when dealing with more than one issue, I just wanted to point out that while one method might aide your path to healing in one aspect, it might be harming another aspect of your life.

Good Luck

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Daniel - a few months ago

I also agree with the above …. I have been diagnosed with Pyroluria and undermethylation (High Histamine) and have been on a nutrient protocol for almost 16 months. I have been told by my doctors and nutritionist that animal protein is very important. I tend to be hypoglycemic so I try to eat a solid breakfast with protein and this makes a huge difference in how I feel throughout the day.

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Zoe - a few months ago

Just been diagnosed with mild-ish pyroluria, makes total sense to me as have had an extraordinarily stressful life! I find it interesting that many pyroluria sufferers were from unhappy childhood homes. Anyway, starting supplements now (trying to start slowly), although personally of the opinion that food and lifestyle factors are more important. Fix those, then find the perfect supplements! Am very positive that this is curable, but will require serious rehabilitation and personal change – if we are willing to do that then anything is possible!

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wolf max - last month

enable ‘search’ and ideally also ‘copy/paste’ function so we can easily find and copy/paste key clues as we take notes to accelerate our own research ex. specific carb diet (that i hadn’t heard of) was a tip i was lucky i could find again by scrolling on these super long pages. search/find would be good at the very least. i can’t even copy these words of my own i type to paste them into my own notes. that doesnt happen anywhere.

no need to post this one to public.

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