So, What’s Pyroluria?
I want people to know about pyroluria. I want everyone to know, but especially doctors because for some reason, in over 20 years of illness, baffled doctors and other health professionals have thrown up their hands and declared I must have Chronic Fatigue Syndrome (CFS) because there was apparently no other explanation for my symptoms. But there was. And it’s call pyroluria!! (or pyrrole disorder or mauve factor).
As anyone with CFS knows, it is a diagnosis of exclusion. If you have every other test for potential causes of your symptoms and they come back negative, then CFS is diagnosed (with a few other considerations) – often the last resort diagnosis. Yet a simple urine test could have told doctors and other health professionals that I have a genetic condition – pyroluria.
This condition causes a malfunction in my ability to synthesise and metabolise oxygen from my haemoglobin, resulting in an inability hold sufficient zinc, Vitamin B6 or B3 in my body.
Basically, unlike other people, I excrete them out through my urine. So symptoms such as extreme fatigue, lowered immunity, inability to digest protein, headaches and even electrosensitivity can be the result of low zinc, B6 and B3 levels, not CFS. But for some reason the many doctors and other health professionals I have consulted over 20 years did not know to test for it!
Why Didn’t Someone Think To Test For Pyroluria?
I don’t blame the doctors. From the information I have gathered so far, society’s demand for the quick fix and the pharmaceutical companys’ intense promotion to doctors of the pills they have developed to “fix” illnesses, has unfortunately left pyroluria as the forgotten child of the medical condition family.
Poor old pyroluria can’t be fixed quickly or certainly not with one pill a day or surgery. I’m learning now that some doctors don’t think pyroluria/pyrrole disorder even exists. Sound familiar fellow people with CFS / ME?!
The treatment for pyroluria is much more drawn out and complex, involving doses of zinc, B6 and B3 up to three times per day, reducing stress, and time for all that to take effect.
It can take people months to feel the early signs of recovery, and can take the sufferer’s body up to three years to rebuild itself to where it should be.
And add to that the fact pharmaceutical companies can’t patent pure vitamins and minerals such as zinc, B6 and B3, and our little forgotten child, pyroluria, becomes even less attractive to the medical marketing machine.
A Frustrating Web of Confusion
I am not a conspiracy theorist. I don’t think there’s anything particularly orchestrated about pyroluria being overlooked by the medical (and much of alternate therapy) community. It’s just been overshadowed by other sexier, more easily treated illnesses.
But for crying out loud (and that’s hundreds of CFS /pyroluria sufferers crying!), once a doctor has got to the end of their knowledge, and CFS has been considered as a possible diagnosis, wouldn’t someone in 20 years think to test for pyroluria?!
I thought it must be some new-found illness, but the original research on it was done back in the 1970s, so that can’t be used as an excuse.
They just obviously didn’t know to test for the condition … or didn’t believe in it! (Just do a search on Google to find the many threads that show that pyroluria, like CFS, is quite a ‘controversial’ condition).
I am astounded that in all the research I’ve read over the years, including the hundreds of CFS research papers I read during my honours thesis (about CFS and elite athletes’ sense of identity), there was no mention of pyroluria as a possible cause of, or contributor to, CFS. Nothing, either, in the over CFS Society magazines and online material I’ve read.
The enormity of this …. What do I call it? Is it a cover-up? Is it malpractice? Is it just ignorance? Or just a lack of willingness to look outside the square? I don’t know.
But the enormity of this lack of diagnosis, the consequences it has had for my life and that of my family and friends over a 20 year period, the stigma of having to deal with being diagnosed with the much-maligned CFS, always knowing I was legitimately sick, but having others doubt the legitimacy of my physical illness … it’s been a massive muck-up to say the least!
Yes, I’m A Bit Emotional …
Yes, this has very much pressed my buttons, and I apologise if I’m coming across as overly emotional in this blog. I’ve tried very hard to keep the emotions out and write in a balanced way, but … consider what it would be like if you suddenly found out that your CFS was potentially being caused by a simply-diagnosed illness that could be treated?
If you DON’T have CFS, consider what it would be like to be told you have an illness that very little is known about, going though treatment after treatment, tens of thousands of dollars in the process, only to find that there is a potential explanation that has been overlooked and untested for?
You may be a little emotional too – especially if your symptoms had continued over 20 years!
Letting Go of Emotion And Focussing on Awareness
But now I think of all the other people out there who are undiagnosed pyrolurics. I can’t do anything to change the past, but I can definitely do something about the future of these people.
The difference the pyroluria diagnosis has made for my life and my future is indescribable.
I was living a fairly empowered, proactive life pre-diagnosis, but what this diagnosis means for my future is mind-blowing.
On the day I received the results of my urine test for pyroluria I cried more than I’d cried in years – tears of joy and tears of grief for all I’d lost in the undiagnosed 20 years.
And then I started thinking of all the things I might be well enough to do over time. I wrote in my diary: “The possibilities are endless. I could run. I could do zumba … I could drive for hours whenever I want. I could go through each day without a sleep mid-afternoon ….”
I could be completely well in time! That’s not a pie-in-the-sky hope or dream as it was in many ways prior to August 30th 2012. It’s a distinct probability.
Give my body the essential fuel it needs to function optimally, and it has to work better. Surely! Or at least now that someone thought to test for it – controversial diagnosis or not – at least gives me the chance to find out.
Even if there’s one person out there who is undiagnosed, and by reading this they get diagnosed, it could make such a difference to their lives. The likelihood is there are many more than one. The thought of anyone else out there going undiagnosed makes me cringe.
If anyone wants to know about the test and where they can have it, please go to this page or this page. I would recommend managing your treatment via a kinesiologist who can work out exactly which supplements you need and how much you need to take (via your own body ‘telling’ them). This has worked well for me. – and if you want to go into the legitimacy of kinesiologists, check out the growing research supporting all that I, and many others, have know for decades).
For example, I have been found to not be able to break down B6, B3 and Zinc in its raw supplement form, so I need to take them all in their “broken down” form – that is, P5P, NADH, Zinc Picolinate.
Spread The Word …
So pass this article onto anyone else who might benefit. I did not match many of the major symptoms of pyroluria – eg depression, anxiety, angry outbursts, schizophrenia, ADHD – so I’d suggest getting tested anyway. It cost me around AU$80 and it could change your life like it has mine.
Get your own information by all means. Research it yourself, and don’t expect every doctor or health professional to believe in its existence. If they don’t, go somewhere else.
(I wrote this article, fueled by emotion, over 12 months ago. While it still has plenty of emotion left in it, I’ve edited it to try to make it more balanced. I’m no expert in pyroluria / pyrrole disorder by any means. This is just my lay-person’s opinion and the views of someone who, for some many years, has yearned for answers to my weird and varied symptoms of CFS and electrosensitivity, only to find, at least some of the answers may lie in a simple urine test and a relatively simple treatment. If my blood boils a little at this illness going undiagnosed for 20 years, please cut me a little slack!)
If anyone has any questions about my personal experience with pyroluria and my treatment, please comment below or send me an email at Louise@GetUpAndGoGuru.com.
More Info
Some of you may have more questions than answers after this blog. The following are a range of articles and blogs I’ve found on pyroluria/pyrrole disorder that may answer some of those questions:
http://www.naturalhealthprotocol.com/pyroluria.html
Yahoo Answers Thread – Scroll down for Kevin’s very balanced, scientific response, with links
http://www.integrativepsychiatry.net/pyroluria.html
http://www.metabolics.com/treating-and-diagnosing-kryptopyrroluria-seminar
http://www.vitalityandwellness.com.au/pyrrole-disorder
http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder
There are a frightening number of forum threads where it seems to be “science” verses “non-proven-alternative therapies”. I’ve heard that all before regarding many of the treatments that have been most effective for me in managing CFS over the years. They seem to miss the point that some types of treatments are hard to measure – ie how do you do a double-blind, controlled trial on Chinese Medicine, kinesiology, Reiki … etc, etc?
Hope Reigns Supreme
My main message from this whole blog is that there ARE other things out there that you may not know about, your doctors may not know about, AND your natural therapists may not know about. You never know what answers may lie around the corner.
I have seen scores of various types of therapists in 21 years before I found someone who knew anything about the apparently-controversial condition of pyroluria. BUT I would rather that she tested for it, had me get the urine test, and now have a chance of seeing whether the treatment for it has a positive response.
I just don’t want another person to go along like me for 20 years and be unaware of the possibility that pyroluria – whether proven or not – MAY be what they are getting many of their symptoms from.
Reading some of the forum threads in my research for this article has made my blood boil because I’ve also come across similar threads re CFS.
Frankly, if a treatment works for you – whether it’s a placebo or not – it works for you. So many people stuck in the “everything must be ‘evidence-based, peer-reviewed, double-blind, controlled trial research’ opinions have very obviously not had to deal with an illness such as CFS /ME or similar “outside-the-box” illness.
May they never have to do so!
Signing off now. This is about as opinionated and controversial as I’ll ever get in my blogs. It’s not my intention for this blog to get political. But, for me, this one had to be written. And it may have taken me over 12 months to get the courage to finish it and post it, but here it is.
Please let me know what you think.
Keep Smiling 🙂
Louise
Chantelle says
Hi Louise, your blog was so good to read because the same thing happened to me (just shy of my 2 year anniversary for getting sick!) Just wanted to know if you feel back to “normal” now?
Louise Bibby says
Hi Chantelle,
Great to hear from a fellow pyrolurian (it sounds like we’re an alien species!).
I am, unfortunately, quite far from being back to “normal” now, but I think that’s due to a number of circumstances. Last year I came down with a severe stomach parasite & the detox from that, plus a virus on top of it, really put me backwards. PRIOR to that I was definitely showing good signs of improvement with the pyroluria treatment.
I’m only just getting back on track from the parasite/virus, but I’m not back to how good I was before it.
I have also had CFS/ME (maybe pyroluria) for over 20 years. My treating practitioner estimated I would probably take 18 months to 3 years to get back to how I should be (judging on other clients she’s had). Considering I had the setback of the other stuff, unfortunately it may take longer now. I don’t know. I like to think positive, but evidence is showing it may take longer than I thought.
It’s coming up 2 years since I started treatment. There’s also some other things that are showing in my system (possibly even Lyme disease), so there may be extra things to deal with. What I AM confident about is the skills & ability of my kinesiologist/chiro/nutritional specialist (she’s all-in-one). She knows her stuff! No matter what, I believe she will help get me back on track from a nutritional, virus/bug zapping, pyroluria treatment perspective. And I can keep doing the rest – pacing, building up my strength with gentle exercise, eating well, keeping a positive outlook and being strict about sticking to the treatment regime.
That’s a long answer, but I hope it helps. How are YOU doing? Please feel free to email me directly on Louise@GetUpAndGoGuru.com
Keep Smiling
Louise
Jenny Horner says
Louise, this is very interesting. I hope the treatment works for you. I’m currently following up a possible POTS diagnosis. When I first saw info on POTS I thought it might have it instead of ME but my opinion at the moment is (if I get an official diagnosis from specialist) its additional to the ME but something that’s holding back my recovery.
I have a tentative theory that instead of curing CFS/ME, in the future there will be no one left with ME because we’ll all have been moved into other measurable diagnoses! Did you watch House? I liked the episode when discussing fibromyalgia they dismissed it as a non diagnosis as it explained nothing and offered no treatment. I imagine this annoyed a lot of people but I got what they meant about the whole diagnosis of exclusion thing. If someone is seriously ill it shouldn’t be acceptable to finish a differential diagnosis until you can either evidence what is wrong or find a treatment to make it better, otherwise you don’t have a diagnosis just a descriptive term for a cluster of symptoms.
Louise Bibby says
Glad you found it interesting Jenny. I was amazed I’d never heard of it in over 20 years of seeing so many varying practitioners. Just goes to show we should always keep an open mind to possible answers to our ailments.
Let me know how you go with the POTS diagnosis. I’ve heard of a few people lately getting that diagnosis. Diagnoses don’t FIX our symptoms, but they at least help to provide some clarity as to why we feel the way we do. AND they help add some legitimacy in the eyes of other people. It’d be nice if we didn’t care about that, but having such an ill-defined, stigmatised illness as ME/CFS, it’s hard NOT to want to be able to prove with more certainly that we actually ARE ill. Though these days I don’t fight it like I used to. If people believe me, great. If they don’t, they don’t. I know how I feel and what I live with. I know it’s real. That’s all that really matters to me. Then I manage the illness from there!! 🙂
Thanks so much for reading and commenting
Keep Smiling
Louise 🙂
Fergus Harrison says
Hi Louise,
Thanks for sharing this information. The best thing that makes yours stand out above all the other stuff on the subject and is what has re ignited my hope of feeling better again, is the way you describe your battle in life just under the radar for anyone to diagnose anything of significance and how you were mostly coping with great effort to make up for the lack of inner strength to achieve easily.
I have led my life that way and am, to others, a normal guy. But I have always been tired and withdrawn but could put on a good show, often with the help of a few drinks-(that usually resulted in falling asleep soon after as I exhausted my self). As the years went on with all the life problems that are associated with these feelings I SUDDENLY GOT WORSE, maybe because I had to cope with responsibilities of being a parent and could no longer hide away after a bout of effort. I came across pyroluria a couple of years ago and decided to try the supplements and see if it helped. It did and within a few weeks I felt changes and within 3 months I felt better than I had ever felt in my life with drive and ambition and able to concentrate and absorb information. I could write long pieces of text without spelling mistakes in a tenth of the time it took me before and without a spelling mistake and my outlook was very positive. Unfortunately as I was looking into lots of reasons for my bad health at the time I had also started a thing called TRE which is very good and helped as well I think, but I put my feeling better down to that and not the supplements, so stopped taking them and kept up the TRE. The long and short is, gradually I went down hill, when it dawned on me it may have been the supplements taking time to work and then keeping me going and not the TRE so now having read your piece above you have inspired me to keep going. I am already feeling better after only supplementing Zinc for a week, so today I am adding B6. My usual sinusitis has nearly gone and I am feeling a bit more energy and oh how nice it is to smell subtle smells again like my children’s skin and my wife’s scent. I know you would say I should get tested before I start the supps. but I cant wait and will keep an eye on my dosages to make sure I do not do any long term damage.
I REALLY CANT SAY THANK YOU ENOUGH FOR YOUR ABOVE AS I WAS WONDERING IF TO TRY IT AGAIN AND THIS HAS MADE ME REALISE IT IS THE WAY FOR ME. I CAN SEE IT IN ALL OF MY PATERNAL OFFSPRING AS WELL SO I WILL HAVE TO CONSIDER THE WAY FORWARD FOR THEM WHEN I AM BETTER MYSELF. THANKS AGAIN. FERGUS
Louise Bibby says
Wow Fergus! You’ve made my day reading your comment. I’m sorry for the delay. I’ve been found to have a mix of other things going on in my body along with the pyroluria, so am being treated for that right now. The treatment involves a pretty tough regime of liquid herbs, liquid and tablet supplements and a very limited diet – all worked out via kinesiology. I believe so much in my Dr/chiro/AK that I’m sticking to it fast, but there’s ups and downs as various viruses and parasites clear out of my system. Lately it’s been a down few weeks, but this is the last treatment I’ll ever need (I believe!) so I’m hanging in.
It’s so great to hear that my blog post made such a difference to you, and inspired you to start the supplements for pyroluria again. It makes it all worth writing these posts when I get comments like yours. The thought that it’s enhanced your ability to enjoy your relationship with your kids and wife puts an even bigger smile on my face. May it all just keep getting better!!!
And yes, you were completely right. I would suggest getting tested via kinesiology for the dosages and types of supplements you’re taking (ie should it be straight zinc or zinc picolinate etc), but I also think to a certain extent we all know our own bodies and you sound like you know yours well enough to notice a difference. If you get a chance to visit an applied kinesiologist (often chiropractors too) down the track, I’d definitely do it so that you’re getting the optimal supplements for your body (and possibly saving money too). I believe the practitioners at http://www.icakusa.com all do that sort of testing. There’s a US map on the site of all registered practitioners. Not sure where you are in the world. http://www.icak.co.uk is also a good source.
Thanks so much for sharing your story. All the best for your healthy, happy life ahead 🙂
Keep Smiling
Louise
Fergus Harrison says
Thanks for your reply-I’m sorry you are in a down few weeks at the moment but keep it up. I am in the UK, where we are very backwards with anything in the natural healing world, when it comes to our National health service, for all the reasons you suggest led to your late diagnosis. I remember one day, waking up feeling great yet again after my first try at this, wanting to sue all the stupid doctors I had visited for most of my life who had led me to believe I was imagining how bad I felt, when a simple test could have led me to feel normal. I wanted to do as you had-get on the internet and shout about it but I had got confused by the other treatment I was doing. I am interested in the info you give on kinesiology and will look into it thank you. Sadly for me, after a good start I am now feeling a bit strange and not too well, so am going to adjust my dosages and forms of supps to see if it helps. I will look into UK based kinesiologists but if you have any info on UK based I would be most grateful. Once again you are an inspiration and I can’t thank you enough, as hopefully I will get better in the end. I am still better than I was, but after so many years, it must have damaged many parts of my system for it to be put right in the space of a few weeks, so I’m not too worried just yet and I am only taking the B6 that has to be converted. My only concern is I have not got much in the way of funds to visit a practitioner. Regards Fergus
Louise Bibby says
Hi again Fergus,
Sorry about my tardy reply. Easter and school holidays over here have thrown me out. I read the comment and planned to reply the next day, but … you know how it goes!
I can very much relate to all you say. That feeling of being let down by the medical system etc. I really do wish all the health practitioners could work together as a united team, rather than as opposing forces. It’d make life a lot easier for everyone I believe. I hold out hope that one day we can get beyond the politics, egos and requirements for “evidence-based research” (when so many effective treatments are inherently hard to measure in randomized controlled trials), and just get on with working with people to heal themselves. It might sound simplistic, but when I’ve experienced so many ‘alternative’ treatments that have been effective versus modern medicine which has provided very little to me in 22 years, I have got to the point of feeling very frustrated at the way we judge effective treatments in our society. Placebos may account for a certain amount of success, but not all. Hmmm, I could on for days on this topic. A holistic approach is really just what I’d love to see adopted everywhere, including within the medical system.
Sorry to hear you went downhill. I hope that has corrected itself, but either way I’d definitely look up a kinesiologist in your area. I found this map http://www.systematic-kinesiology.co.uk/practitioners/practitioners-map and this Find An AK Practitioner (applied kinesiologist) page, so hopefully that may help you. It may only take one or 2 visits, although my system has obviously been affected by lots more than pyroluria over the years, which is what my AK is now treating (she has also studied many other healing modalities too). From my research just then, it looks like an AK session could cost you 80 pounds first up, and 55 afterwards, but you’d have to make sure they were willing to muscle test for nutritional needs. There are other ways to do it yourself, but they are less reliable (and more alternative – though I’ve used them for years. Search dowsing/pendulums!)
Please feel free to email me directly if you have any further questions – louise@getupandgoguru.com
I must say it’s lovely to hear I have inspired you. That put a smile on my face when I read it. Thanks!
Keep Smiling
Louise
rebecca says
Hi Fergus, I have CFS and Pyroluria and am in the UK. I know several nutritionists who treat it (although it is pretty simple once you understand the basics) and a cheap place to get the urine test (they can post it to you also). in my experience it is not the total cause of CFs, but the cause of life lived under stress which has all the knock on effects, its also linked to digestive problems becuase the low zinc causes low stomach acid so that is another supplement i would recommend. i have lots to say on this so if you want an off-line conversation let me know.
Louise Bibby says
Thanks so much Rebecca. Hopefully Fergus will get that message. I’d be really interested to hear your story. I agree pyroluria is not the total cause of CFS/ME. Since my diagnosis, I have also been found to have a range of viruses in my system and stomach parasites, which are now being systematically treated. Your info re digestive problems is consistent with my own experience, having had digestion issues throughout my journey with ME/CFS.
Thanks for you contribution. I really hope you are doing well now. Please feel free to email me to tell me more about your experience – Louise@GetUpAndGoGuru.com
Keep Smiling
Louise
rachel says
Hi Rebecca – I’d really love to make contact with you. I have just been diagnosed with Pyrolouria and live in the UK (London). I developed CFS after RAI for Graves Disease but think HPU might have been part of the reason for developing Graves in the first place. I now have to work out how to treat it and am mind-boggled by the differing info on the web. Have been working with a USA researcher -but would love to find someone who really knows what they are talking about in the UK.
Stephanie says
Hi Louise & other pyrolurians : ) particularly Rebecca … if you do read this, i am also in the UK [east midlands] am a long-term ME sufferer who recently came across ‘pyroluria’ and am about to be tested for it … does Rebecca know if there is someone in my area who could help me treat it, if my result shows i have it ? I am willing to handle it myself as usual if i need to do so, though someone with experience alongside would be good.
All the best to everyone & HUGE THANKS to Louise for sharing : we have sooo much in common !
Love Stephanie : )
Louise Bibby says
Hi Rebecca,
I’m sorry I haven’t checked my comments for a while. I’ve had a hiatus from my blog – kind of taking a different direction at the moment – so I’ve been offline a fair bit. Regarding who may be able to test you for pyroluria in the UK, I think there are a number of places that do the testing. I know in Australia it wasn’t too hard to find somewhere to take my blood test and post it (cryopacked!) to a Queensland lab, so maybe just Google pyroluria/pyrrole disorder testing in UK and see what you get. Otherwise if you can’t find anywhere, please email me – louise@getupandgoguru.com and I will try to help you out. Naturopaths and other natural therapists seem to be the ones who identify this disorder initially, with some doctors believing it doesn’t exist (we’re used to that!), but there are labs that do the actual blood test. My initial testing came from an applied kinesiologist, which I completely trusted, and that trust was borne out when I had the blood test.
Please feel free to email me privately about this. I have come a long way with the way in what I’ve learned since writing this post, and for myself, the pyroluria diagnosis and treatment have proved to be only part of my overall treatment and nutritional deficiencies.
Cheers Louise