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My Experience with Pyroluria and Copper overload-A Misfit Toy-Again.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Misfit Toy, Oct 10, 2015.

  1. Misfit Toy

    Misfit Toy Senior Member

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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.
     
    Last edited: Oct 10, 2015
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  2. Johnmac

    Johnmac Senior Member

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    From Dr Walsh, the pyroluria guru, at http://www.alternativementalhealth.com/commentary-on-nutritional-treatment-of-mental-disorders-2/#B6

    "The dangers of B-6 have been greatly overexaggerated. The original concerns began with a university study 25 years ago in which volunteer students were paid to take B-6 (pyridoxine hydrochloride) doses ranging from zero to 10,000 mg daily. After a few weeks, a number of the students taking doses higher than 5,000 mg/day reported a loss of sensation in areas of the skin. The study was stopped and in every case the symptom completely disappeared. This result became widely known & the side effect was identified as neuropathy.

    Within a few years, similar neuropathy was observed in a small fraction of persons taking megadoses of 2,000 mg/day and for a while B-6 dosages were limited to 1,000 mg/day. Later, there were rare cases of persons who experienced temporary neuropathy with doses of a few hundred mgs. In the hundreds of neuropathy cases, the neuropathy completely disappeared after stopping the B-6. The effect a temporary one, and I’m unaware of
    anyone ever being permanently “hurt” by B-6."


    There's plenty on this page about overmethylation & other subjects that might pertain to you, if you're interested. As Dr Walsh has treated many thousands of patients, & has the world's biggest database linking psych symptoms to biochem, I tend to take him seriously.

    Misfit Toy - great name, BTW.
     
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  3. dannybex

    dannybex Senior Member

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    He should try telling that to the hundreds who have experienced B6 toxicity at doses sometimes less than 25 mgs a day:

    http://www.medhelp.org/posts/Nutrition/B6-Toxicity/show/2642?page=1
     
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  4. Johnmac

    Johnmac Senior Member

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    Yes, I have no personal knowledge of this, other than that I am fine on high doses of B6 & P5P - sample of one.

    Just passing on what the guy says.
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    I am glad you said this Danny because I started having tingling in my hands and feet on the B6 and P5P--B6 100 mg.

    These protocols...they all talk about what is needed for different mental situations, etc but they don't talk about how something may be too much for someone or other things to take into account. It all makes it sound so easy....if you just take this you will feel so much better, but if they aren't balanced, too much, or your system isn't good at clearing and they just build up....then what?

    There are so many other factors. That's the problem. And what if your adrenals are a mess? I think B6 is good for the adrenals, but these things are overstimulating and can make you even more sick, or have adrenal burnout also due to so much stimulation from the B's.

    His high recommendations for B6....honestly, if I took 300 mg of B6, I would be dead. I would go into full bloom adrenal exhaustion, not that I am not already there but it would make me so sick. Plus, the neuropathy.

    I would have days of feeling out and about but then would be in bed due to overdoing.....it wasn't good.
     
    Last edited: Oct 11, 2015
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  6. dannybex

    dannybex Senior Member

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    Exactly @Misfit Toy.

    Also @Johnmac -- my blunt reply wasn't directed at you, just at Walsh's simplistic and potentially dangerous advice.
     
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  7. Misfit Toy

    Misfit Toy Senior Member

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    So, then would P5P do this? It is related to B6 I believe.....
     
  8. ahmo

    ahmo Senior Member

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    p5p is activated form of B6.
     
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  9. dannybex

    dannybex Senior Member

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    @ahmo is correct. Some have problems with p5p as well. I can tolerate it in occasional small doses, but not much more or I get agitated, usually get neuropathy, and sometimes even leg jerks at night in bed. They go away when I stop the b6 or p5p.

    I'm not sure who's correct, but there are many who question if 'pyroluria' even exists. As always, things are more complicated than taking a few things to correct a long standing dysfunction that may have many contributing factors or triggers.
     
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  10. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I am pretty sure I have not had Pyroluria my whole life as I have not always been depressed or even anxious. Yes, I was always sensitive but I sure as heck wasn't an introvert. Not until this illness, the fatigue and pain...so, I am not sure.

    The whole copper thing does not surprise me. I may take things at much lower doses and even skip them here and there. With copper, there's a history of BCP's and estrogen dominance along with endo and PCOS, which I have. Copper is high when estrogen is high and mine was always high. Plus, wicked PMS and migraines....
     
    Last edited: Oct 12, 2015
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  11. TheChosenOne

    TheChosenOne Senior Member

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    I've had problems with mania and depression too. Including insomnia.
    Go to bed at 4 am, 5 am. Wake up at 3 pm, sometimes even 5 pm. I found out that stress was one of the causes.
    Pyrrole can be caused by stress, as well as heavy metals. The pain that you witness might be a detox reaction from mercury (as zinc chelates mercury).
    The thing that really helped me and allowed me to take more supplements is lithium. Because of it, I wake up earlier and I'm actually awake when I wake up and I am genuinly tired when I have to go to bed.
     
  12. picante

    picante Senior Member

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    Dear @Misfit Toy, it sounds like you overdosed on zinc:
    And even when she put you back on just 7 mg, your body said NO.

    But clearly your body responded well to some amount of zinc. In my experience, it has been difficult to get my minerals at the right dose. Especially zinc.

    I did not respond well to Zn mono-methionine in 30 mg caps last fall. But I was needing big doses of potassium, and the link above indicated that zinc would be needed to balance potassium.

    That's when I found the liquid ionic minerals, which can be dosed in 1-drop increments. The brand I get has no other ingredients besides purified water. Maybe the picolinic acid is part of the problem for you, who knows?

    Despite taking lots of potassium, and despite plenty of pyroluria symptoms (no diagnosis, though), it turns out that I only need about 5 drops of this per day, most of the time. (Which turns out to be 7.5 mg.)

    Another thing you could try, especially if you are still reacting badly to supplemental zinc, is to take one or more of the zinc synergists listed on the acu-cell page above. That website has been a huge help to me, so I'm passing on the strategies I've been using.

    As for P-5-P, I haven't hit the overdose level (for me), and I'm taking 25 mg/day. Like @dannybex, I suspect your dosing was too high for those two forms of B6 as well. A list of overdose symptoms can be found here.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    @picante -thank you for the info. I spoke with the ND yesterday. I told her everything after a night of no sleep and feeling....desperate....that I felt better on the supplements mentally, but had high insomnia and high pain. She says this happens, due to as you said, dosages.

    So, I am to go on Zinc Citrate over the Picolinate because as it turns out, from what I am learning, many do not do well on the picolinate form. Many are on the gluconate form. But she says citrate is better absorbed. Again, to try 7 mg or even smaller.

    I also have to get on Magnesium...glyconate. So, those are the two things to try now.

    Who would ever think zinc could mess you up?...not me. Wow...

    The B's later. The B revved me up but good. I was on P5P at 50mg. My sleep was so nutso. I would not go to bed til 6 am and get up at 2:30 pm which was nuts and then I would take it and be up all night...ugh. She wanted me to set my alarm to get up and take it early, but I can't since I don't get to sleep til 3:30-4am due to my darn adrenals and sleep pattern.

    This is something else people are talking about...that I need to take iodone for my hormones..this is on the Pyrolle page. Honestly, the diagnoses that "patients" are giving me on this forum I am on and the treatments are kind of hilarious.

    @TheChosenOne -I have very high copper...my mercury is looking good. I am having a hair mineral analysis to check it out even more at her suggestion.
     
  14. picante

    picante Senior Member

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    You are welcome!
    You do have a unique set of conditions, but there are lots of people who have Sjogren's, there are many who have autoimmune illnesses, many who have adrenal misregulation, many who have acute reactions to "normal" doses of particular supps. Here on PR, most of those people have other things going wrong, too: depression has to be one of the toughest, but Lyme and RA are right up there, too.

    I thought you were smart to list some of the non-workable suggestions people have made (head us off at the pass, you know). I haven't seen what happens to you on other forums, but I have seen a bit of what happens here, and the fact that some folks are grasping at straws for you may merely indicate that they are responding to your desperation. Also, you tend to get lots of replies -- because we care about someone who sounds like she's at her wits' end.

    Apply this thought to an overdose of anything. I start with half-doses of most things, even if it's my ND recommending it. They don't really understand how unbalanced our chemistry is.

    The "protocols" you mention -- such as for pyroluria -- are not designed for people with ME. Whenever I see a protocol, I come back to PR and do searches: what reactions have others with ME had to these supplements?

    I'm dubious about that statement, but that's not really the point. You need a form you can tolerate! Here's someone else who had a similar reaction to picolinate: http://forums.phoenixrising.me/inde...disorder-hypothesis.18437/page-11#post-352589

    I linked that because he mentioned high estradiol. Do you still have the estrogen dominance you mentioned above? If so, that is why people are recommending iodine. It suppresses estrogen. I didn't have high estrogen, but after reading Dr. Brownstein and Dr. Abraham on Hashi's and iodine, I realized it was worth a try (you have to take selenium with it, or you can make Hashi's worse). Lugol's iodine finally got me through menopause at age 57. I thought I would never stop bleeding and spotting! It was driving me nuts.

    I don't know if you've tracked down all the things that tend to raise estrogen, but manganese is one of them: http://www.acu-cell.com/femn.html
     
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  15. Misfit Toy

    Misfit Toy Senior Member

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    @picante -I thank you for your insight. I wanted to get back to you. Yes, you are absolutely right about dosages. People take 400 mg of Plaquenil a week for Sjogrens. Last year, I took 2 pills a week. That means I took 400 mg a week. It helped my pain go away.....just 2 pills a week when everyone else was taking 4 pills per day!

    When I thought of zinc, I never thought..oh, yes, that could make me sick. Mensah mentions it like it will make you better in one week, but you are right, these folks don't have CFS or any other conditions. I do, plus I am an overmethylator with such low histamine which makes it even harder.

    I think when I start the zinc back up, I will try 3 mg...no joke. She wants 7 mg, I will do half of that.

    Right now, my goal is to get the pain down and get some more sleep as my sleep is not so great at this point.

    My adrenals are not right, but I think that's from the Sjogrens. The inflammation is hitting them.

    The iodine may be an idea, but I set up an appt with an endocrinologist first to get that looked at...my thyroid and everything else. I just had my thyroid checked for nodules via a biopsy and I have a goiter, and yes, I am estrogen dominant. I have endometriosis which is a dead ringer.

    So, iodine may be good, but I can't do that til I know more and also fiddling around with my hormones, above anything else in my body is throwing kerosene on a fire. It always ends badly. My hormones, or treating them...is a sure way for me to go and get so sick and not come out......
     
  16. Wayne

    Wayne Senior Member

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    I recently discovered nettles juice and nettles tea to support kidney/adrenal function. t's good for GI health and thyroid function as well. Best herbal adaptogen I've ever used. -- Wishing you the best in figuring out some good solutions for yourself.
     
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  17. picante

    picante Senior Member

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    Sounds like a good plan.
    Yikes! :eek:
     
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  18. triplejosh2002

    triplejosh2002

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    Misfit Toy,
    I was thinking that potentially part of your problem with the protocol (besides the B-6 and P-5-P seeming to be too much for several reasons that i could post later if you'd like), specifically the total insomnia from the B-6/P-5-P, could be magnesium related. It seems you should've been told automatically that higher doses of B-6 (and I believe P-5-P, at least based on my own experience) often lead to magnesium depletion.

    Maybe this is not a problem in those that have a genetic pyrrole disorder compared to your probably acquired one (which is probably actually copper overload and perhaps other elevated metals creating a positive test result. Also evidence of you not having a genetic form of pyrrole disorder [or at least only a slight form of it, though i doubt it] seems to me to be your relative low dose "overdose" symptom of tingling).

    But it's common knowledge that high supplemental B-6 dosages can cause deficiency of magnesium, very crucial to sleep. Magnesium deficiency can cause insomnia, and perhaps it's not so much that your body is so stimulated by the B-6/P-5-P for so many hours, but more because you don't have one of the essential ingredients for your body to relax itself and induce sleep.

    And I'm thinking magnesium might also help with the copper dumps taking place; it might even help your pain. So that magnesium glycinate you're getting on might be a key player. 90% of Americans aren't taking in enough magnesium which is vital for 300 different enzymatic reactions in the body and low magnesium is associated with a whole host of problems including neurodegenerative disorders and an essential factor in bone health (along with others including zinc and I would have to say manganese, both which are depleted obviously in copper overload.)

    Magnesium also is extremely important in maintaining potassium sufficiency, another mineral, of which a deficiency of is associated with anxiety. And both magnesium and zinc are calming minerals, increasing GABA in the brain (well as long as zinc isn't pushing out too much copper or other stimulating minerals/metals/chemicals. Magnesium can start doing this too to some extent it seems at high levels as i've experienced mildly and read about, but i wouldn't worry about it it trying to just gain sufficiency)

    I know zinc is pretty essential too for potassium levels, like Picante said, but magnesium seems to be as critical, if not even moreso. If you are pretty deficient in magnesium, you should become automatically deficient in potassium, and supposedly many people get their potassium levels up with no focus on potassium but focusing on their magnesium levels. And both these are crucial in hydration, heart palpitations, chest pains, twitching, cramping, relaxing the muscles, diminishing back pain. Hope this reinforcement helps :)
     
    Last edited by a moderator: Oct 20, 2015
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  19. ahmo

    ahmo Senior Member

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    @triplejosh2002 Hi joshjoshjosh...welcome to pr. Thanks for the mg connection. Please break your posts into smaller paragraphs, it's really hard for many (most?) of us to focus on big blocks of text. thank you.
     
  20. triplejosh2002

    triplejosh2002

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    okay sorry, I understand, will do :)
     
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