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 its 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 🙂 )
Here are some points of interest you might like to skip quickly to on this page, just click on a link below to be magically whisked to said location:
My Dr Says I Have Pyroluria (My Pyroluria Discovery Story – Constantly Updated)
So What Is Pyroluria Disorder?
My Common Pyroluria Symptoms
Some Common Questions About Pyroluria
The Copper Connection
Adrenal Fatigue And Pyroluria
Do You Have Pyroluria? – Pyroluria Questionnaires or Quiz Pages
The Common Pyroluria Treatment
– Pyroluria Supplements
– Pyroluria Diet
– Pyroluria Lifestyle Changes
What's Your Experience With Pyroluria?
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 its 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 makes 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.
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.
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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.
This 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 (AMZ link) 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:
- Pyrolle Disorder
- Pyrrole Disorder (slightly different spelling)
- 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.
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)
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.
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 its own, that comes with this kind of constant anxiety
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.
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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.
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 (Pyridoxine – Solgar'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)
- 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.
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Popular Pyroluria Healing Supplements
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.
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, rowing or exercise machines, 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. Learning to relax is a KEY component of dealing with this.
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.
So 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.
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