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Diagnosis Pyroluria - life changed!

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  • 29-01-2015 7:31pm
    #1
    samphire24
    Registered Users Posts: 7 ✭


    Hello all! I'm new to the whole boards thing but I feel I have to shout my news from the roof top, but it's snowing so I'll just share it here.

    For longer than I care to say I have suffered (mostly silently) with anxiety, depression, loneliness - despite being in a few long term relationships, lack of motivation, inability to manage stress, dreadful career history - despite being reasonable intelligent, insomnia. I could go on and on about what an abject failure and disappointment my life has been. For some reason I never went down the antidepressants route as I have always been sceptical of messing with my brain chemistry (speaking for myself here).

    So for the rooftop moment... I have discovered I have a number of genetic metabolic disorders and one of them is called Pyroluria. In a nutshell, a byproduct of hemoglobin production in my body builds up and binds with my vitamin B6 and zinc making them unavailable for the what they are actually needed for (including the production of serotonin). I have been taking supplements of these for a few days and I cannot describe how much better I feel. To put it into context, I have spent much of the past six months in bed with chronic fatigue, brain fog, confusion and anxiety, cutting myself off from friends and family. Yesterday I went for a walk (with someone!), cooked dinner and dessert!, tidied my room and did not feel like lying down for any of it! If you are feeling down please just research this condition and see if it may apply to you, then find a healthcare practitioner who will listen to you.

    And before the naysayers come on board and tell me that this is not a thing, and "medicine" and "science" are dubious of its existence - don't bother. I have studied and worked in the medical sciences field and am capable of doing my own research, coupled with my personal and familial experience, and I can tell you it is very much a thing.

    I would be so happy if this information reached just one person and made their life better.

    Thanks for listening.


Comments

  • Options
    #2
    Greenmachine
    Registered Users Posts: 5,063 ✭✭✭Greenmachine


    samphire24 wrote: »
    Hello all! I'm new to the whole boards thing but I feel I have to shout my news from the roof top, but it's snowing so I'll just share it here.

    For longer than I care to say I have suffered (mostly silently) with anxiety, depression, loneliness - despite being in a few long term relationships, lack of motivation, inability to manage stress, dreadful career history - despite being reasonable intelligent, insomnia. I could go on and on about what an abject failure and disappointment my life has been. For some reason I never went down the antidepressants route as I have always been sceptical of messing with my brain chemistry (speaking for myself here).

    So for the rooftop moment... I have discovered I have a number of genetic metabolic disorders and one of them is called Pyroluria. In a nutshell, a byproduct of hemoglobin production in my body builds up and binds with my vitamin B6 and zinc making them unavailable for the what they are actually needed for (including the production of serotonin). I have been taking supplements of these for a few days and I cannot describe how much better I feel. To put it into context, I have spent much of the past six months in bed with chronic fatigue, brain fog, confusion and anxiety, cutting myself off from friends and family. Yesterday I went for a walk (with someone!), cooked dinner and dessert!, tidied my room and did not feel like lying down for any of it! If you are feeling down please just research this condition and see if it may apply to you, then find a healthcare practitioner who will listen to you.

    And before the naysayers come on board and tell me that this is not a thing, and "medicine" and "science" are dubious of its existence - don't bother. I have studied and worked in the medical sciences field and am capable of doing my own research, coupled with my personal and familial experience, and I can tell you it is very much a thing.

    I would be so happy if this information reached just one person and made their life better.

    Thanks for listening.


    I honestly have no idea what the purpose of your post is. But it sound like you are giving medical advice about a potentially dubious condition. I have heard no mention of you meeting with a licensed doctor.


  • Options
    #3
    jh79
    Registered Users Posts: 8,216 ✭✭✭jh79


    Probably better in the conspiracy theory forum seems to be a made up condition to facilitate the sale of snake oil.


  • Options
    #4
    gctest50
    Registered Users Posts: 9,605 ✭✭✭gctest50


    We describe a method for detecting hemopyrrole and kryptopyrrole in urine, with a detection limit of 100 mug/liter (1 part in 10(7)). Urine is thoroughly extracted with methylene chloride and the extract is concentrated and examined by gas chromatography and gas chromatography-mass spectrometry. No hemopyrrole or kryptopyrrole could be detected in 52 samples, from 17 controls, 29 schizophrenics, and six persons with acute intermittent porphyria.

    http://www.ncbi.nlm.nih.gov/pubmed/627053


    Bonus Eruptus - where the skeleton tries to leave the body

    https://www.youtube.com/watch?v=aqImkDgDwHU


  • Options
    #5
    samphire24
    Registered Users Posts: 7 ✭samphire24


    Greenmachine wrote: »
    I honestly have no idea what the purpose of your post is. But it sound like you are giving medical advice about a potentially dubious condition. I have heard no mention of you meeting with a licensed doctor.

    I have been diagnosed by a licensed medical practitioner with Acute Intermittent Porphyria. Pyroluria is a porphyria.

    The reason for my post is to make people aware of this condition - not to give medical advice.

    The importance being that sufferers of Porphyria have a safe drugs list i.e. most pharmaceutical and herbal remedies can cause severe reactions (including, but rarely death). It is a particularly difficult diagnosis to deal with as most doctors know little or nothing about it - due in no small part to the fact that drugs cannot be prescribed to treat it. Vitamins and supplements can do wonders as they have done for me. I have no agenda.


  • Options
    #6
    samphire24
    Registered Users Posts: 7 ✭samphire24


    Bonus Eruptus - where the skeleton tries to leave the body

    I may have missed the point of this post.


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  • Options
    #7
    samphire24
    Registered Users Posts: 7 ✭samphire24


    jh79 wrote: »
    Probably better in the conspiracy theory forum seems to be a made up condition to facilitate the sale of snake oil.

    Have you bothered to actually check it out?


  • Options
    #8
    jh79
    Registered Users Posts: 8,216 ✭✭✭jh79


    samphire24 wrote: »
    Have you bothered to actually check it out?

    http://www.sciencebasedmedicine.org/pyroluria-and-orthomolecular-psychiatry/

    What convinced you this is an actual illness?


  • Options
    #9
    samphire24
    Registered Users Posts: 7 ✭samphire24


    jh79 wrote: »

    What convinced you this is an actual illness?

    What has convinced you that it is not? Do you have personal experience with it?

    Not everything can be explained by science based medicine.


  • Options
    #10
    jh79
    Registered Users Posts: 8,216 ✭✭✭jh79


    samphire24 wrote: »
    What has convinced you that it is not? Do you have personal experience with it?

    Not everything can be explained by science based medicine.

    As someone who has studied science and worked in medical science you should know that anecdotal evidence is not sufficient evidence.


  • Options
    #11
    locum-motion
    Registered Users Posts: 5,143 ✭✭✭locum-motion


    Your post has piqued my curiosity, so, if I may ask:

    What was the profession/qualification/speciality of the professional who gave you this diagnosis?

    What hospital or institution do they work at?

    What tests did they perform in order to make the diagnosis?

    Of these, which tests had normal results, and which abnormal?

    What were your levels of Hemopyrole and Kryptopyrole in your urine?

    What is a normal level of Hemopyrole or Kryptopyrole?


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  • Options
    #12
    Pyrrole
    Registered Users Posts: 1 ✭Pyrrole


    I've just been told I've Pyrrole Disorder please give me some hope.
    samphire24 wrote: »
    Hello all! I'm new to the whole boards thing but I feel I have to shout my news from the roof top, but it's snowing so I'll just share it here.

    For longer than I care to say I have suffered (mostly silently) with anxiety, depression, loneliness - despite being in a few long term relationships, lack of motivation, inability to manage stress, dreadful career history - despite being reasonable intelligent, insomnia. I could go on and on about what an abject failure and disappointment my life has been. For some reason I never went down the antidepressants route as I have always been sceptical of messing with my brain chemistry (speaking for myself here).

    So for the rooftop moment... I have discovered I have a number of genetic metabolic disorders and one of them is called Pyroluria. In a nutshell, a byproduct of hemoglobin production in my body builds up and binds with my vitamin B6 and zinc making them unavailable for the what they are actually needed for (including the production of serotonin). I have been taking supplements of these for a few days and I cannot describe how much better I feel. To put it into context, I have spent much of the past six months in bed with chronic fatigue, brain fog, confusion and anxiety, cutting myself off from friends and family. Yesterday I went for a walk (with someone!), cooked dinner and dessert!, tidied my room and did not feel like lying down for any of it! If you are feeling down please just research this condition and see if it may apply to you, then find a healthcare practitioner who will listen to you.

    And before the naysayers come on board and tell me that this is not a thing, and "medicine" and "science" are dubious of its existence - don't bother. I have studied and worked in the medical sciences field and am capable of doing my own research, coupled with my personal and familial experience, and I can tell you it is very much a thing.

    I would be so happy if this information reached just one person and made their life better.

    Thanks for listening.


  • Options
    #13
    ciaranoco
    Registered Users Posts: 5 ✭ciaranoco


    samphire24 wrote: »
    I have been diagnosed by a licensed medical practitioner with Acute Intermittent Porphyria. Pyroluria is a porphyria.

    The reason for my post is to make people aware of this condition - not to give medical advice.

    The importance being that sufferers of Porphyria have a safe drugs list i.e. most pharmaceutical and herbal remedies can cause severe reactions (including, but rarely death). It is a particularly difficult diagnosis to deal with as most doctors know little or nothing about it - due in no small part to the fact that drugs cannot be prescribed to treat it. Vitamins and supplements can do wonders as they have done for me. I have no agenda.
    Thank you for this. In the context of helping other to be aware of Pyroluria I would like to add my endorsement your intent. Like yourself having spent years on meds and searching/researching what could behind my issues I discovered pyroluria as the possible cause and was able to take the medical tests that confirmed it (just last year). Sucha simple solution (zinc & b6 supplementing) for over 35 years of searching!

    If perchance anyone is reading this discussion its is just worth considering Pyroluria testing - there are symptoms lists on the web that can guide you towards whether it is a probable cause. Unfortunately Irelands medics are not trained to look out for it but there is a gp practice in Dublin that have been fully trained on it. If you have MH/anxiety, energy issues and are not aware of the cause its worth checking Pyroluria.


  • Options
    #14
    misstearheus
    Registered Users Posts: 2,115 ✭✭✭misstearheus


    *As a life-long Gold-Card Member of the Invisible Illness Club, tentatively goes to check Opening Poster's other posts.....*


  • Options
    #15
    Skyfarm
    Registered Users Posts: 235 ✭✭Skyfarm


    jh79 wrote: »
    Probably better in the conspiracy theory forum seems to be a made up condition to facilitate the sale of snake oil.

    Really? that's all you have to say to a person who has carried the disease and asks people not to take the piss and you throw that text at them,surely you understand the saying "if you can't say something good,don't bother"


  • Options
    #16
    mrsmags16
    Closed Accounts Posts: 185 ✭✭mrsmags16


    So i was curious and looked it up on UpToDate (evidence based medical database of, like, everything medical - all subspecialties including haematology covered). That's the only source on the Internet I believe (am a doctor).

    Got this: No results were found containing "pyroluria"

    Am I spelling it wrong?!


  • Options
    #17
    endacl
    Registered Users Posts: 22,231 ✭✭✭✭endacl


    Greenmachine wrote: »
    I honestly have no idea what the purpose of your post is. But it sound like you are giving medical advice about a potentially dubious condition. I have heard no mention of you meeting with a licensed doctor.

    Indeed. Glad you're feeling better, OP, but perhaps you only know what you think you know?


  • Options
    #18
    jh79
    Registered Users Posts: 8,216 ✭✭✭jh79


    Skyfarm wrote: »
    Really? that's all you have to say to a person who has carried the disease and asks people not to take the piss and you throw that text at them,surely you understand the saying "if you can't say something good,don't bother"

    And you think it is better to encourage them to seek snake oil for an illness that doesn't exist??


  • Options
    #19
    endacl
    Registered Users Posts: 22,231 ✭✭✭✭endacl


    mrsmags16 wrote: »
    So i was curious and looked it up on UpToDate (evidence based medical database of, like, everything medical - all subspecialties including haematology covered). That's the only source on the Internet I believe (am a doctor).

    Got this: No results were found containing "pyroluria"

    Am I spelling it wrong?!

    You may be confusing it with Tooraloora, which was rampant among Irish American populations in the earlier part of the 20th century.


  • Options
    #20
    endacl
    Registered Users Posts: 22,231 ✭✭✭✭endacl


    samphire24 wrote: »
    What has convinced you that it is not? Do you have personal experience with it?

    Not everything can be explained by science based medicine.

    Here we go.,.

    I feel a bout of Popcornius Getticus coming on.

    :D


  • Options
    #21
    Skyfarm
    Registered Users Posts: 235 ✭✭Skyfarm


    endacl wrote: »
    Here we go.,.

    I feel a bout of Popcornius Getticus coming on.

    :D

    As much as i tried to get annoyed,i laughed at that one


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  • Options
    #22
    mrsmags16
    Closed Accounts Posts: 185 ✭✭mrsmags16


    I love this thread!


  • Options
    #23
    dollyk
    Registered Users Posts: 602 ✭✭✭dollyk


    Am I missing something ?
    :o


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