Misfit Toy
Senior Member
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- 4,178
- Location
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I started the whole Pyroluria protocol on September 1st. Starting first with zinc. I felt nothing for 3 weeks. In the 2nd week, B6 and p5p were added along with Evening Primrose oil. I was okay.
P5P-50 mg once a day
B6-100 mg once a day
zinc at dinner.
But on September 22nd, I was raised from 15 mg of zinc to 30 and boom-the next day I was out, happy and I felt connected. Suddenly, the anxiety was less, the depression was better, but it was replaced by something else...horrible pain. I was having foot pain. My feet were killing me. I was online looking for compression socks. That is not me, but I didn't think, "Oh, it's the supplements."
And after 6 days of utter insomnia and not even due to pain, but just insomnia for insomnia's sake, I reached out to my practitioner and asked, "WHAT GIVES?"
Her response; I was taken off of the B6 and Zinc and felt better. The pain subsided and now I was just on p5p. But...the insomnia persisted. We are talking staying up until 6 am every morning and getting up at 2:30 in the afternoon. What did happen during this time frame?....my appetite went up...I have not had an appetite for months and here I am wanting to eat. Finally.
Now, I have insomnia without supplements, but I am usually in bed by 3 am or 3:30 which is still awful, but at that time of night...I was just getting started on the P5P. I was awake...wide awake, not wanting to go to bed. I felt restless. I felt good, but I felt restless.
At times during the day, I felt manic like. Too much energy. Not good.
So, I finally reached out to her again and was taken off of the p5p and put back on the zinc at 7 mg.
Five days of this and my feet and everything were killing me. Yes.
But this is just me.
And this is where my mental pain comes in....this is just me. I am from the land of Misfit Toy's, but I can't find another Misfit Toy like me. I am the only one like this as all others on the protocol have similar things, but the pain....they do not. They don't have autoimmune conditions like I have with the Sjogrens or the Celiac...so yet again, I feel like a weirdo...
One girl felt much better on the protocol, but she began having migraines. Her anxiety and sleep was so much better, but the migraines, which she never had made her have to quit it. Other people have intolerances, some say Zinc Picolinate makes them so sick. Some say they can't handle B6 due to neuropathy.
I keep hearing that I am dumping heavy metals. Anymore, I don't give a crap. Why am I so sick? What the hell is this doing?
It clearly can help your mood...I want that back. Plus, my ability to deal with stress was so much better. The positives of feeling like interacting with the world again and going out...but I can't not sleep and live with pain. Where is the balance?
I took myself off of everything and I had to up the prednisone and I am on a fentanyl patch due to the pain.
What have I heard from other Pyroluria folks.....these things- annoying things...I say annoying because I have been there and done that. Of course, it's them wanting to help, but it's so old... here goes:
Change your diet.
Take charcoal (it does nothing, my pain remains and insomnia remains)
You have to kill the yeast.
You need to work on your liver and kidneys.
Do coffee enemas...(I have a few times. Why do I dislike this? Because it's a mess and the coffee ruins my rug.)
Try a non oxalate diet.
Have you done the Auto Immune diet?
You need to cut out gluten...(um, I have Celiac disease.)
You need to treat your adrenals.
You need to take the supplements at 6 am. (Um, I have ME or CFS and don't get to sleep until 3:30...no, I can't change that.)
So, where to go from here?
This is what I know.....I felt connected to the universe and happier on the treatment, but I could not sleep and I had INTOLERABLE pain. I could handle music and noise. I watched TV regularly again and stimulation wasn't as bad a problem. Lights weren't as bad and I loved the sun. I felt things and felt excitement. I felt hope and wasn't weepy. That was nice...a total switch and my friends noticed and so did my therapist. I was more myself...not completely by any means, but more "present" instead of being in my head.
I want to feel connected again and not hauled up in my apartment begging for solace again. Here I am again, in isolation mode. I don't want to do this. It's fucked up. I felt like connecting to the people in my life instead of shutting the door.
I will report more when I know more. Thanks for listening. I speak with my ND on Tuesday. I have CFS...I have other conditions. I am not a one size fits all. I am not sure if she can help me, if I am too difficult, etc. The Sjogrens is making it impossible. Sjogrens is more of a beast than CFS ever was. When something causes pain....forget it.
The biggest thing she wants me on is zinc and it's the hardest thing for me to take. I am low in zinc, an overmethylator and high in copper. My histamine is so low.
But, this healing crisis, if that is what it is...why? Why must it make you disabled even more than you already are? I was having to take neurontin for the pain and that did nothing, nor did prednisone. Jesus.
P5P-50 mg once a day
B6-100 mg once a day
zinc at dinner.
But on September 22nd, I was raised from 15 mg of zinc to 30 and boom-the next day I was out, happy and I felt connected. Suddenly, the anxiety was less, the depression was better, but it was replaced by something else...horrible pain. I was having foot pain. My feet were killing me. I was online looking for compression socks. That is not me, but I didn't think, "Oh, it's the supplements."
And after 6 days of utter insomnia and not even due to pain, but just insomnia for insomnia's sake, I reached out to my practitioner and asked, "WHAT GIVES?"
Her response; I was taken off of the B6 and Zinc and felt better. The pain subsided and now I was just on p5p. But...the insomnia persisted. We are talking staying up until 6 am every morning and getting up at 2:30 in the afternoon. What did happen during this time frame?....my appetite went up...I have not had an appetite for months and here I am wanting to eat. Finally.
Now, I have insomnia without supplements, but I am usually in bed by 3 am or 3:30 which is still awful, but at that time of night...I was just getting started on the P5P. I was awake...wide awake, not wanting to go to bed. I felt restless. I felt good, but I felt restless.
At times during the day, I felt manic like. Too much energy. Not good.
So, I finally reached out to her again and was taken off of the p5p and put back on the zinc at 7 mg.
Five days of this and my feet and everything were killing me. Yes.
But this is just me.
And this is where my mental pain comes in....this is just me. I am from the land of Misfit Toy's, but I can't find another Misfit Toy like me. I am the only one like this as all others on the protocol have similar things, but the pain....they do not. They don't have autoimmune conditions like I have with the Sjogrens or the Celiac...so yet again, I feel like a weirdo...
One girl felt much better on the protocol, but she began having migraines. Her anxiety and sleep was so much better, but the migraines, which she never had made her have to quit it. Other people have intolerances, some say Zinc Picolinate makes them so sick. Some say they can't handle B6 due to neuropathy.
I keep hearing that I am dumping heavy metals. Anymore, I don't give a crap. Why am I so sick? What the hell is this doing?
It clearly can help your mood...I want that back. Plus, my ability to deal with stress was so much better. The positives of feeling like interacting with the world again and going out...but I can't not sleep and live with pain. Where is the balance?
I took myself off of everything and I had to up the prednisone and I am on a fentanyl patch due to the pain.
What have I heard from other Pyroluria folks.....these things- annoying things...I say annoying because I have been there and done that. Of course, it's them wanting to help, but it's so old... here goes:
Change your diet.
Take charcoal (it does nothing, my pain remains and insomnia remains)
You have to kill the yeast.
You need to work on your liver and kidneys.
Do coffee enemas...(I have a few times. Why do I dislike this? Because it's a mess and the coffee ruins my rug.)
Try a non oxalate diet.
Have you done the Auto Immune diet?
You need to cut out gluten...(um, I have Celiac disease.)
You need to treat your adrenals.
You need to take the supplements at 6 am. (Um, I have ME or CFS and don't get to sleep until 3:30...no, I can't change that.)
So, where to go from here?
This is what I know.....I felt connected to the universe and happier on the treatment, but I could not sleep and I had INTOLERABLE pain. I could handle music and noise. I watched TV regularly again and stimulation wasn't as bad a problem. Lights weren't as bad and I loved the sun. I felt things and felt excitement. I felt hope and wasn't weepy. That was nice...a total switch and my friends noticed and so did my therapist. I was more myself...not completely by any means, but more "present" instead of being in my head.
I want to feel connected again and not hauled up in my apartment begging for solace again. Here I am again, in isolation mode. I don't want to do this. It's fucked up. I felt like connecting to the people in my life instead of shutting the door.
I will report more when I know more. Thanks for listening. I speak with my ND on Tuesday. I have CFS...I have other conditions. I am not a one size fits all. I am not sure if she can help me, if I am too difficult, etc. The Sjogrens is making it impossible. Sjogrens is more of a beast than CFS ever was. When something causes pain....forget it.
The biggest thing she wants me on is zinc and it's the hardest thing for me to take. I am low in zinc, an overmethylator and high in copper. My histamine is so low.
But, this healing crisis, if that is what it is...why? Why must it make you disabled even more than you already are? I was having to take neurontin for the pain and that did nothing, nor did prednisone. Jesus.
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