Supplements

Taking supplements, to improve health, is real popular.   But, how safe is that for porphyria sufferers?  I’ve tried a few with marginal to bad results.  I am going to share what I’ve experienced or heard; your results may be vastly different.

Maca – triggered attacks
Multivitamins – no attack; but, slowed me down greatly
Propolis – Caro had problems
Magnesium – great for relaxing bowels during attacks.  I mix magnesium citrate power (brand name Calm) &  magnesium sulfate (Epsom salt).  This I mix into water or some safe fluid.  The amount that I use is not much, less than a tea spoon.  Probably best to start small and increase to suit your needs.  Warning – it will clean out your bowels.

17 Responses to Supplements

  1. Zibbi says:

    Has anyone tried B supplements?
    How is everyone with vitamin D?
    I read somewhere that porphyria was a disease of “divalent cations” like Mg, calcium, zinc, etc but I couldn’t find anything more. So your comment about magnesium is interesting.

    • Greg says:

      I use magnesium during attacks. It is a muscle relaxer & is great for relaxing all the muscles in my gut that go nuts during an attack. Sometimes, if I am feeling “off”, I’ll use a little magnesium as a preventative.

      • Zibbi says:

        Interesting. Glad it works! How much do you take and in what form??

        • Greg says:

          I mix magnesium citrate power (brand name Calm) & magnesium sulfate (Epsom salt). This I mix into water or some safe fluid. The amount that I use is not much, less than a tea spoon. Probably best to start small and increase to suit your needs. Warning – it will clean out your bowels. After I post this comment, I will add this information to the listing of magnesium, in the list of supplements; I hope that makes it easier on folks searching for relief.

  2. susan letteer says:

    i am ok with vit a, d, e, selenium. i thought i might have pyrolluria and did their protocol. the zinc made me worse and worse. it was a fair amount of zinc though.
    the vitamins i am not scared of but the herbs scare me silly. i would love to hear more people tolerating milk thistle, eg. but i won’t try it.
    some small amount of minerals and vitamins for me. c is ok.

    • Greg says:

      Hi Susan,

      I’ve had mixed results with vitamins; generally, the results have not been positive. However, I’ve had no problem with milk thistle; I used it for several months and noticed no change, for the good or bad. I use several herbs with no problems, such as oregano, rosemary, parsley, dill, thyme; I grow all of them except for dill (I should grow some dill). It is important to keep a log of everything you consume; it is easier to identify problems that way.

      sela? From Psalms?

      Greg…

      • Shirelle says:

        I have PCT and I have used milk thistle for my liver health. I say dramatic results in my numbers coming down during the period that I took this versus not taking it.

        • Greg says:

          I am glad to hear that milk thistle is working for you, Shirelle! I had not thought about milk thistle in years; I’ll have to give it a try.

  3. sherrie says:

    what about l=glutamine..bought some to try but to nervous to try it yet any thoughts..

  4. Greg says:

    Hi Sherrie,

    I know nothing about L-glutamine. And, I agree with you; I am always nervous before trying something new. What inspired you to look at L-glutamine?

    Hopefully, someone with experience will post a comment.

    Thanks for commenting.

    Greg…

  5. pee says:

    porphyria variegata
    -zinc every day for the skin to heal better, works like magic for me
    -iron intravenous 2/year
    -vit D and selenium when deficit

    in the morning i drink black tee, i let it steep only 1-2 minutes, add a half lemon and as much sugar as it needs to taste balanced. i drink it as hot as possible. since i do that, i didn´t have any migraine, and i had almost every day before.
    my neuropathic pain got i bit lower.

    i tried a lot of stuff like multivitamines from supermarket, but i had bad experiences so often. not always attacks, also stuff like allergic reactions or feeling tired or depressed. better just eat a lot different stuff instead of 😀

    • Greg says:

      Sounds like you have a pretty good handle on it. Keep up the good fight! I am a tad bit surprised by the intravenous iron. My hematologist ran some specific tests regarding iron & found that I have the genetic markers for hereditary hemachromatosis (sp?)…fortunately, I don’t have that. Very interesting.

      I have problems with multi-vitamins, too. I try to get all my nutrients from food. I keep a food log & my doctor checks it out periodically.

  6. Ellen says:

    I really need some help here. I started magnesium because of severe leg and arm cramps. I have a spinal cord injury. Worked great, ran out about a month later I started again as a preventitive and it appears to now give me bad leg cramps. I stopped it waited a week and tried again with the same results. I have tried this 5 times with the same results every time. I was also diagnosed with an under active thyroid, took the thyroid medicine and had the same muscle cramps. Pharmacist said that usually happened When the dose was too high. I am taking the lowest dose and the repeat blood work shows I do need this. Having prophyreia, is this the problem? Prophyreia patients are not supposed to take vitamins? This may be why I am reacting to so many things. I am newly diagnosed and obviously am missing some important information.

    • Greg says:

      Ellen,

      I think that vitamins are a problem for porphyria because our livers are already overloaded and don’t have the energy to metabolize supplements. So, when I want to take vitamins (like when fighting an infection), I use EmergenC or the Publix equivalent and add a spoonful of powdered glucose; without the glucose my system bombs.

      When I need magnesium, I usually mix Epsom salt and Calm (brand name for some magnesium citrate that I use). I mix them because either of them by themselves is repulsive; for some reason, together it tastes better. From what I’ve read, Epsom salts are the preferable way. This is normally for cramping in my gut. I haven’t any problems with muscle cramps.

      As far as your cramps and spinal injury, I really don’t know. That is way out of my experience & knowledge. I have no medical training; I’m an engineer. So, as much as doctors scare me; they are legally the only ones that can offer “cures”.

      When I exercise too much and have sore muscles, I get in a tub of hot water with Epsom salts mixed in…that might help.

  7. Jan A says:

    How can I find a doctor that has knowledge in my area? I was diagnosed a long time ago with AIP, but my doctor has retired and no one seems to want to help. Does anyone have a list with locations of doctors? The website Porphyria Foundation list some doctors, but a couple of them I have gone to and they are clueless. Thanks so very much Jan

    • Jan A says:

      Meant to say I live in Knoxville,TN thanks Jan

    • Greg says:

      Jan,

      That is a very good question. I had pretty much given up on discussing porphyria with doctor’s, as the negative reactions and the pressure to treat it as something it’s not was too much for me. I mentioned the situation to a PA that I saw for a sinus infection & she talked me into seeing a local hematologist who was open to looking into porphyria. He was great; but, he moved into research. I am seeing another doctor in the practice; but, she has no clue and only follows what he & I has established. I am trying to find another doctor at this time.

      I went to the porphyria center at UAB with one of my relatives. The doctor that she was seeing was adamant that you can’t control it with diet and trigger avoidance. That was an arrogant and dangerous statement.

      Even when I had a good doctor with some understanding, he let me take the lead on managing my porphyria. He periodically evaluated my blood tests and would look at my food logs; he also made sure my painkiller prescriptions were up to date. Even when I improved to the point of not using Percocet, he wanted me to keep it on hand, just in case. My need for Donnatal has diminished greatly; but, I still have to use it occasionally.

      When I see a general practitioner (colds, check-ups, etc.), I always as for a PA; they will spend more time with you, listen to what you say, and are generally not as arrogant.

      Keep a food log & pray.

      Greg…

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