[jfbenson]

I am a 51 year old female who was recently tested for pyroluria. Although my ranges were normal, my symptoms warrant treatment per testing. Is there anyone else out there who has this disorder?

[Rrae]

You've found a wonderful forum full of caring people who understand these struggles of many dimensions.....

Neurotalk has at least 6 forums that would be of great benefit to you, as pyroluria (when doing an information search) showed several subsets of symptomatic categories......
You can use the 'search' feature at the top of the page to type in this condition and perhaps you'll find posts on previous discussions here, or simply browse thru the main menu and jump in wherever you feel inclined.

There's fantastic support around every corner, so please feel at home here.
It's like one big family here and we all learn and grown from one another.

Just ask if you need anything

Caring
Rae

[MelodyL]

Originally Posted by jfbenson

I am a 51 year old female who was recently tested for pyroluria. Although my ranges were normal, my symptoms warrant treatment per testing. Is there anyone else out there who has this disorder?

Hi.

Wow, I must say, you have taught me something today. I looked up Pyroluria and found this website:

http://www.naturopathyonline.com/Pat.../pyroluria.htm

I bet we all know people who have been mis-diagnosed and just perhaps they need to have their urine tested.

Even if we help one person, we HELPED ONE PERSON!!!

Welcome to Neurotalks (I should have started my post with these two words)

Thanks very much for coming here. I learned something today.

Melody

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[Garnet_LDN]

Originally Posted by jfbenson

I am a 51 year old female who was recently tested for pyroluria. Although my ranges were normal, my symptoms warrant treatment per testing. Is there anyone else out there who has this disorder?

Hello to a Fellow Texan!

I also have recently started treatment for Pyrroluria. I have not been tested by am going on information I have gathered in extensive literature seraches and from talking to practitioners, labs and reading everything I can find on the disorder. I also have a masters degree in pharmacology so that helps some. I have been involved with an effort in the UK to get Low Dose Naltrexone licensed on their National Health Service. As it turns out many of the disorders and some of the processes are parallel to the high oxidative stress in Pyrroluria. So that put me ahead of the curve a little, but not much!

I started out in July taking a B100 complex, 50 mg enteric coated P5P and 50 mg of Zinc Picolinate, as well as 500 mg of Natural Calm Mg Citrate. Within three days I could feel a difference in sleep and felt less anxiety, which had been an increasing problem. I have been under a lot of stress
due to unemployment so the idea that taking supplements could do this much for my sleep and building anxiety is amazing to me.

I am now to the point, 7 weeks later, of adding a few more supps, gradually,
to see how I feel. I have just received my order of Niacinamide, Biotin, Mn, B12 SL and Activated Folate (FloaPro). I have increased sources of Omega 6 in my diet but have not ordered Borage Oil yet, because of the heat.

I am happy to share the information I have gathered with you!

Please feel free to contact me privately if you wish. I can send you some of the articles I have collected and also links to video interviews with Bill Walsh who trains physicians in the treatment and who founded the Pfeiffer Center, Abram Hoffer, MD the first to treat a patient with high doses of B3 and then B6 for a mood disorder, and Dietrich Klinghardt, MD of Seattle, who finds that many of his chronic Lyme and Autism patients test positive for Pyrroluria. Dr K presented to the Lyme In Autism conference last year and the video as well as the Power Point is up in several locations on the web. He has a well developed approach to Pyrroluria and the detox that happens when you start to replace Zinc.


Janet
San Marcos, TX

[(Broken Wings)]

Welcome you both to NT

It's good to me you and learn about your challenges too.

We do support each other. That helps a lot.

Just let us know if you need help finding your way around.