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Can anyone give me some advice?

Forum: Gilberts Disease
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  • Can anyone give me some advice? by  hedgehogheather  8 year  3,005  Gilberts Disease
    Hello.

    I am 21 and have just been told that I have got Gilbert's disease/syndrome. My doctor told me that it is nothing to worry about but that was all. She gave me no information on what Gilbert's disease is, what the problems are, if there is anything that I can do to help it etc. I have looked on the internet for details and have found out plenty about what it is/how it is caused but very little on any practical advice.

    That is where I am hoping that you can help. Is there anything that I can do in my every day life to help ensure that things dont get worse? Are there any foods that you have found to help? Is there any other advice that you can give, or details of where else to look to find out more?

    Please help if you can.

    Thanks,

    Heather

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    • Re: Can anyone give me some advice? by  Dollmaker  8 year  2,808
      Hi Heather My son has this too, he is 18, We didn't know anything about it either I had to do alot of searching, I have found out that dandelion root helps to break down the bile, also the amino acid Taurine, I have just ordered some by JARROW, 1000mg. we started on 500, but now I am trying the 1000mg. 1 in the morning and 1 at night and may even raise it to 3 times a day, not sure. You need somthing that is going to help break down the bile better. also vit c. I am still trying to find out all I can. His bili ruben was at 3 in Oct. and I will have it checked again this summer. The Doc. didn't seem to worried but I don't like the idea of anything putting extra stress on the liver. So hopefully this can help.~Anita

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      • Anyone trying UV therapy? by  woodchick  8 year  2,800
        I know this may sound strange, but when I was going through nursing school I spent time in the neo-natal ICU, and they used UV lights to combat hyperbilirubemia, also known as infantile jaundice. I learned that bilirubin breaks down in the presence of this light, as it passes through the small capillaries of the skin.
        I have gilberts syndrome, and I have always been a 'sun worshiper'. I usually feel miserable, low energy and oftentimes downright sickly in the winter, but this feeling is dispelled by a couple rounds in a commercial tanning bed. This syndrome is mainly a caucasian ailment, and our lighter skin does allow more UV to pass to the capillary webs. Some suggest that I have SAD (seasonal affective disorder), and I crave artificial sunlight to stimulate my pineal gland, but my suspicion is that I have been naturally correcting my high billirubin with UV.
        Of course, natural sunlight is always preferable, but up north it is not usually possible to expose large portions of skin in the winter months!
        Any thoughts on this?
        ©†ƒ……•™¼‡_Original_Message_¾€š½ž¢«»¬ï°©

        I know this may sound strange, but when I was going through nursing school I spent time in the neo-natal ICU, and they used UV lights to combat hyperbilirubemia, also known as infantile jaundice. I learned that bilirubin breaks down in the presence of this light, as it passes through the small capillaries of the skin.
        I have gilberts syndrome, and I have always been a 'sun worshiper'. I usually feel miserable, low energy and oftentimes downright sickly in the winter, but this feeling is dispelled by a couple rounds in a commercial tanning bed. Some say I have SAD (seasonal affective disorder), and I crave artificial sunlight to stimulate my pineal gland, but my suspicion is that I have been naturally correcting my high billirubin with UV.
        Any thoughts on this?

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        • Re: Anyone trying UV therapy? by  Dollmaker  8 year  3,002
          WOW, That makes sense!! My son had that when he was born too, and now has Gilberts, Thanks so much for the insight. Could I ask what your level of bili ruben is? My sons was 3 the last time I checked, but I figure it will go higher, I wonder how much of this burden your liver can take. I live in Mi. so winter is bad. Thanks again~Anita

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