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Part 2 - Pyrrole Disorder IS a Real Condition
Recently I was on the net doing some more research on Pyrrole Disorder and I found this Dr tearing down Pyrrole disorder, saying that it's not a real condition. This made me feel very upset, I mean what on earth does he even know about it?
It also made me suspicious as to his intentions, seeing that Western Medicine still hasn't recognised Pyrrole disorder as a real condition and it may never be taught in med school or written about in medical text books because it's a nutrient deficiency and cannot be cured with drugs.
Always follow the money trail...
Anyways, I decided to share my story which you can read here if you're just stumbling on this blog. I am sharing my story in order to spread awareness and hopefully help others to find out the truth of their suffering.
If you didn't read my last blog 'You're Not Going Crazy' you may like to go there first to see what I went through and if you can relate to any of it.
Here's a reminder of what Pyrrole's is:
Pyroluria (Pyrrole Disorder) is a blood disorder that is mostly genetic but can sometimes also be caused by other factors (gut health, stress, trauma etc.)
When a person has this disorder, the abnormal synthesis of haemoglobin occurs. A byproduct is created called Kryptopyrrole (also known as HPL or Pyrrole) and this byproduct is harmless in people who don't have this condition, it just gets excreted through their urine, however in Pyrrole people (I'll use this term for the sake of this blog so it's easier to understand) the byproduct has a negative impact...
When you have Pyrrole disorder, the HPL binds to B6 because B6 is an Aldehyde and Kryptopyrroles (HPL) will seek out these in particular. This twosome will then go after zinc and now you have 2 crucial nutrients bound up and of no use to the body. You now have a severe deficiency and many health problems and symptoms to follow...
What Kind of Symptoms and Problems Can One See?
There are many physical, emotional and mental symptoms of having Pyrrole Disorder and here are just some... (you may have some, many or all of these symptoms)
Symptoms:
Anxiety, nervousness, pronounced mood swings, low stress tolerance, depression, panic attacks, motion sickness, general loss of appetite, social withdrawal, memory loss, episodic anger/temper outbursts, severe inner tension, insomnia, seizures, tremors, migraines, acne, irregular menstruation, impotence in males, disordered perception, eosinophillia, dyslexia, hallucinations, delusions, paranoia, loss of reality, increased sensitivity to sound/light/touch/smell, frequent unexplainable nausea, joint pain (knee/leg), restless leg syndrome, fatigue, digestive disturbances, irritable bowel syndrome, gluten intolerance, hypoglycaemia, anaemia, allergies, delayed onset of puberty, suicidal thoughts/tendencies, sensitivity to medications, pessimism, hyperactivity, emotional lability and more...
Conditions:
ADHD, Alcoholism, Aspergers, Autism, Bipolar Disorder, Dissociative Identity Disorder, Epilepsy, Lyme Disease, Manic Depression, Multiple Sclerosis, Obsessive Compulsive Disorder, Parkinson's disease, Schizophrenia and more..
If you are reading this and relating to these symptoms or the condition/s, you may wish to consider getting tested for Pyrrole Disorder? Check out my first blog to see how. Then be sure to read the others (it's a 4 part series):
So How Do You Treat Pyrrole's?
I won't give you my exact protocol because that would be irresponsible and reckless as you should NEVER self-diagnose and should rather seek out the proper advice and get the necessary tests done.
I will however tell you what I've been doing but I won't give nutrient dosages. I do the following to manage my condition and help my body to heal:
- Take Zinc citrate and P-5-P
- Take vitamin B6
- Take vitamin B12 (methylcobalamin)
- Increase GLA intake (flax/hemp and evening primrose)
- Take a good quality magnesium supplement (I love CalmX by Metagenics)
- Use magnesium spray on my body and take magnesium bath
- Eat an organic whole food diet
- Eat minimum to no dairy, gluten, processed sugar/foods
- Avoid preservatives in food and wine
- Avoid artificial flavours and additives
- Reduce alcohol intake
- Increase meditation and mindfulness (become aware of how I'm reacting/responding to situations and stresses/stressors)
- Exercise daily but not to push myself too hard
- Collagen powder and a good probiotic daily for my gut health & healing
- Take Desiccated Liver capsules for the biotin (vitamin B7) and vitamin B6
- Add a high quality organic spirulina powder to my daily smoothie for the GLA my body so needs
So I realise this may seem a lot to implement if you're someone who is new to health or this condition but really it's just taking good care of yourself.
Speaking of taking good care of myself, I was on this protocol for a little while and I was feeling much better but then I let life get in the way and for whatever reason I totally lapsed. I stopped taking the nutrients because I got busy and I got lazy and boy did I sure pay the price!
I paid the price with my health (again!) and this meant that all of the symptoms that I'd previously experienced with Pyrrole disorder started coming back...
If you want to learn about what I sent through with this you can read my first blog called 'Maybe You're NOT Crazy'?
I hope that this information serves you and you get the help you need if you think you may have this condition or you have just had a diagnosis.
Much love, Tam x
Disclaimer:
This is not intended as health advice, I am only sharing my personal journey with Pyrrole's. Please see your trusted medical/healthcare provider for diagnosis and treatment.
References:
- McGinnis, W. (2004). Pyroluria: Hidden cause of schizophrenia, bipolar, depression, and anxiety symptoms. Retrieved from http://www.alternativementalhealth.com/articles/pyroluria.htm
- McGinnis, W. R., Audhya, T., Walsh, W. J., Jackson, J. A., McLaren-Howard, J., Lewis, A., . . . Hoffer, A. (2008). Discerning the mauve factor, Part 1. Alternative Therapies, 14(2): 40–50.
- McGinnis, W. R., Audhya, T., Walsh, W. J., Jackson, J. A., McLaren-Howard, J., Lewis, A., . . . Hoffer, A. (2008). Discerning the mauve factor, Part 2. Alternative Therapies, 14(3): 50-56.
Websites:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4471964/
http://www.conqueringpyroluria.com/
https://vitalityandwellness.com.au/blogs/news/pyrrole-disorder
