Use Bili-Light To Treat Gilberts Syndrome?

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IDK about any of you but I'm sick of looking yellow all the time and having brain fog and all the other stuff NO docters care about. For years us gilberts sufferers have had to deal with no progress and take it into our own hands to find out what works. Ive looked at a bunch of stuff and tried a ton of stuff.

I started eating no red meat, sugar, chocolate or fried food and accompanied with tanning. My levels have slowly go down but it was months inbetween slowly. Not enough to get it below jaundice levels. Then my docter FORBID me to get regular blood tests which is driving me insane. Now i'm going to have to talk to her in person. Ridiculous. I read that a person had success with a Low Carb High Fat diet so Ive been trying that but can't tell anything really without blood test.

So I was thinking they use Bili-lights to treat Crigler Syndrome. Its sappose to work less effecient after age 4 cause of the skin thickening. Bili lights are also not commercially available. I'm not sure what the side effects would be either. Has anyone thought about this? I think it would make more sense then getting sun or tanning cause its direct attack on the problem. Let me know what you guys think?

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8 Replies

  • Posted

    Hi, NIcholas,

    I understand your suffering.

    Have you tried the light already?

    I don't think the light will really help to solve the liver prolem. but don't quote me on this since I am not medical professional.

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  • Posted

    What i find weird is they treat newborn babies for jaundice in hospital under lights and explain a symptom of infant jaundice is lethargy and tiredness.. yet doctors can not see the correlation between GS Jaundice and tiredness and fatigue. Dont know if the lights would work for you or not Nicholas but it gets to a point where you are willing to try anything!
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  • Posted

    Nicholas,

    I am very curious as to whether or not you decided to try the light.

    I have recently been diagnosed with GS, and I am excited to try the light therapy myself.  

    I have also read some really promising research about the effects of sunlight.

    Have you ever noticed any changes in your symptoms when you are spending more time in the sunlight? 

    For me, I know that my symptoms got a whole lot better in the summer time.

    how about you?

    curiously,

    emily

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  • Posted

    Yes sunshine works for me also...
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    • Posted

      EVERY oportunity I go and sit in the sun..

      No problems with any skin cancer, and I have always spent a lot of time outdoors.  I get a skin check every year to be safe.

      There are 'Daylight bulbs' you can buy and also if you check on the SAD disease pages you will find all kinds of special light bulbs that give off a light that is close to sunlight.  I have not tried them but if they work for the SAD disease they should in theory work for Gilbert Syndrome..

      Many people in Sweden change all the bilbs in the house for proper ' daylight bulbs' and they say it helps them..

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  • Posted

    I too am curious about this concept. IF I'm reading this correctly this means sunshine will help with symptoms? Would a tanning bed be a viable option? I mean I dont like tanning BUT I also dont like yellow eyes! wink
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    • Posted

      Your question moves into untested science.

      The sun’s rays are a complete mixture of all available wavelengths, visible light, plus infrared and ultra-violets etc, etc..

      A tanning bed would not have the full range of wavelengths of light that comes from the sun.

      The exact wavelength of light that helps lower the bilirubin levels may not be known.

      You would have to find out in great detail what types of lights are used for infants and then do some experiments.  Adult skin is also perhaps thicker than an infant’s and this could make a big difference.

      So many unanswered questions remain..

       

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