I’ve just been diagnosed with Pyrrole Disorder or Pyroluria. As a counsellor I can really see how many people would benefit from learning more about this disorder, so I’m filming my journey with Pyrroles for my blog.
This video explains what Pyrrole Disorder or Pyroluria is..
Please leave your comments below, I’d love to hear from you.
Celina x
hi Celina,
thanks very much for sharing this info. I am currently being tested after suffering some pretty awful symptoms for a few years. I am quite certain the test will be positive based on the symptoms. Please keep sharing your journey! Davina 🙂 x
Hi Davina, best of luck with your tests. Let us know how you go! Cx
Thankyou for sharing your personal story Celina Gregory-Phillips. I must say I’m feeling a lot calmer now and coping better taking my Pyrrole Primer. I found 2 weeks in I felt markedly improved. I also take herbs and minerals to support my nervous system and adrenals. It’s different for everyone…we are all unique with overlapping symptoms. My copper:zinc ratio wasn’t too out. I believe copper dumping (if too high) can make the process long and challenging. (Anyone willing to comment on that?) Personally I find a multifactoral approach works for me…walking, getting out into nature, yoga, self nurturing, being better organised, time out (mostly from the kids dare I say), headspace/mindfuless all make the whole picture a rosier place. It is a relief to be able to know that this is treatable and you can be the calm woman you wanted to be minus the valium or alcohol! I was a long term vegetarian also…getting my head around eating meat only took me 20+ years! My fatigue (and having children) prompted me to eat meat. Maybe you could start with broths, soups and slow cooked meats to begin with as they are easier to digest. Red meat is a better way to get those iron stores up compared with fish or chicken. I also eat a lot more eggs now and I have finally raised my iron stores to happy levels…that alone can make a huge difference. Having high energy/special needs children too also throws a spanner in the works…I look forward to hearing how they travel with a different biomedical approach.
Hi Jo, great to have you here! Thank you so much for all of that great info. It can be so useful to share information dealing with such a complex disorder. I can’t wait to start my treatment and hopefully have some improvement. Even though I didn’t know at the time it was Pyrroles, I also found changing my lifestyle hugely beneficial. Less stress, more rest, Mindfulness and failsafe foods all help a great deal for me. Hopefully the high grade nutrients are the missing link! Cx
I tested pos for pyroluria 2 weeks ago I saw a post on fb about it and ordered the urine test I have experienced depression and adhd like symptoms plus wanting to isolate for many many years. I have been on many antidepressants. Tried neurotransmitters diets cleanses. Energy work. Psychics You name it. to feel good. This may be the missing piece for me. I’m hopeful. I have felt like walking dead for too long. My children have had to live w a depressed mother and I missed a lot of their activities due to my anxiety and depression. That hurts me a lot. My ph consult w dr mensah is June 15. Any suggestions of questions I need to ask?
There are few holistic Drs around here. The naturopath I consulted w in New Mexico never mentioned pyroluria and I spent $$$ on supps that did not help at all.
Yes you can hear my frustration!
Getting this turned around and being functional and well is my goal.
Thank
You for this blog
Best to everyone here
Linda
Hi Linda, thanks so much for connecting. I can relate to so much of what you have said. When testing positive, so many things seem to make sense, yet we still need to try and get better. Firstly Pyrrole Disorder or Pyroluria is unfortunately not curable, but it is treatable. A few things before we get to that. Firstly, I would recommend you see a Doctor that has trained with Dr William Walsh or his teachings. You can find practitioners on the following website http://www.walshinstitute.org. Secondly, I’m not sure how accurate the home tests are, perhaps they are fine, but the Dr will probably want to test you also and will do lots of blood tests as well as this shows the whole picture of your current biochemistry. Most relevant are your zinc and copper levels, as Pyrrole sufferers have low zinc and high copper. Zinc and B6 bind to the pyrroles which are excreted through the urine leaving the body deficient in B6 and zinc. This changes our brain chemistry which causes problems such as anxiety and depression. So, the Dr will need to do lots more tests. They will also check your histamine level to see whether you have any methylation issues (I will post a video on methylation soon). Pyrrole sufferers often suffer from undermethylation or overnethylation. So make sure your Dr checks that. You may also want your Dr to check if you have the MTHFR gene, which causes methylation issues. It may be expensive so check the cost first!
Re treatment, the main treatment is nutrient treatment, largely Zinc & B-6, however your bloods will need to be tested first to see what you personally need. Everyone is different and over or under supplementation can effect your brain functioning, so we can’t self diagnose or self prescribe. Usually the nutrients need to be mixed by a compounding pharmacy. I’m not sure of the cost in the USA but it can be around $40-50 per week in Aus. If you do not have methylation issues, in some cases treatment can work very quickly (a matter of weeks), if you have methylation issues I’ve been told 6-12mnths. It seems everyone has a different experience and it is definitely a ‘journey’. Also, as this disorder is not curable, you will need to continue taking the treatment, as soon as you stop, the only symptoms will come back. Lifestyle changes are really important too ie. Less stress, meditation, healthy wholefood diet, no artificial anything etc.
I hope this is helpful and feel free to ask any other questions. Stay in touch and let us know how you go! Cx