Posted , 4 users are following.
I experienced a drastic improvement of my symptoms over this last summer, has anyone else ever noticed a connection to the seasons and your symptoms?
Does being in the sunshine help you? I am thinking of the babies that are put under the Bili Lights to clear their bilirubin and treat their jaundice. Could this same principle apply for GS adults in the summer time sun?
couriously,
Emily
0 likes, 7 replies
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Biometric EmilyandBilly
Posted
Photodermatol Photoimmunol Photomed. 2001 Dec;17(6):272-7. Can sunlight replace phototherapy units in the treatment of neonatal jaundice? An in vitro study.Salih FM1.Author information
Abstract
BACKGROUND/AIM:
Light can be efficiently used for the treatment of neonatal jaundice. Sunlight, which covers a large portion of the light spectrum including the bilirubin-absorbing range, is abundant in the Middle East. Such advantages prompted the present study to investigate the efficiency of sunlight in isomerizing bilirubin. This may introduce a practical source of light for the treatment of hyperbilirubinic infants in areas where phototherapy units are not available.
METHODS:
The efficiency of sunlight was quantified by a comparison with a phototherapy unit. Aqueous bilirubin solutions were exposed to periodic sunlight over the entire year and the reduction of bilirubin concentration was monitored spectrophotometrically. Bilirubin solutions were also exposed to a phototherapy unit intensity comparable to that of sunlight (17 cm away from the source).
RESULTS:
The data indicated that at this comparable light intensity, the phototherapy unit was as effective as sunlight. However, for the treatment of neonatal jaundice, phototherapy units are usually operated at a distance of 50 cm (where the light intensity is six times less than that of sunlight). When this distance was tested, only 16% of bilirubin was isomerized in the first 5 min of exposure. In contrast, about 65% of bilirubin was isomerized when the phototherapy unit was placed at a distance of 17 cm and when the bilirubin solutions were exposed to sunlight for the same time period. The hourly and seasonal changes in sunlight intensity affected the reduction in bilirubin concentration significantly.
CONCLUSION:
Data revealed that sunlight is almost 6.5 times more effective than a phototherapy unit when operating at the ward geometry after taking isomerization efficiency and area of exposure into consideration. Moreover, sunlight is still more effective during the winter season, when its intensity is lower. Thus, sunlight may be considered an alternative phototherapy source for the treatment of neonatal jaundice, particularly in areas where conventional phototherapy units are unavailable.
Biometric
EmilyandBilly Biometric
Posted
I had actually come across this study once before. Have you ever noticed a change in your symptoms in the sunnier months of the year?
Biometric EmilyandBilly
Posted
Definitely makes sense that sunlight would reduce bilirubin, but this of course depends on it being the bilirubin levels that are making us feel unwell, and I'm not certain. Although liver function tests are supposed to be normal in Gilbert's, mine were consistently abnormal until I lost weight (was never truly overweight, let alone obese, just carrying some spare abdominal inc presumably internal fat), so the fat had likely compromised function in the same way as fatty liver disease. I have extensively investigated myself for every possible alternative liver disease and all negative.
There are a couple of reported cases of people with GS developing abnormal liver function due to 'intrahepatic cholestasis', basically bilirubin backing up in the liver and I suspect a variety of stimuli can cause this. Not uncommon in non-GS sufferers during pregnancy so it wouldn't surprise me if we teeter on the edge of this a lot of the time and wonder if it's a mild form that makes us feel unwell. But just speculating and haven't looked int it in depth.
Incidentally, I tried really sticking to a low-fat diet this week with no eating at all after 7 pm to see if previous symptom alleviation could be replicated. Really felt better, especially after a couple of days. Interestingly, the only day I felt lousy (GS-type symptoms, not tiredness) was after a bad night's sleep, and a lot of contributors do seem to mention that missing sleep seems to worsen symptoms.Best, Biometric
traudley EmilyandBilly
Posted
It is interesting that yuo mentioned the Sun. We get Vitamin D from the sun, I have read that standing in the sun for 10 minutes per day ( make sure that you wear appropriate protection). I was feeling ghastly for sometime, I was tired, weepy and a friend suggested having my vitamin d level checked which I did and found it was extremely low and was given a prescription. May I suggest that to anyone who is reading this to be aware that as we have a Liver disorder we may have problems processing/ absorbing foods. You can buy milk and yogurts which contain Vitamin D also check out vegetables which also are high in Vitamin D it is as well to also check your calcium level. Many people are affected by the lack of daylight in the winter months and feel at an all time low during winter I think they call it SAD Syndrome all to do with Seasonal disorder. it maybe as well to look it up. I know this is an awful condition to have, given all the symptoms you experience just in the course of the day. The more you discuss, the more you will understand and I think it is fair to say that we have our own experience of this condition which many sufferers will understand, just becaise we look alright it does mean that we are! Keep your fluids up as this helps especially water.
EmilyandBilly
Posted
claire90847 EmilyandBilly
Posted
he felt what he described as a switch switching after 10 days of sun in France and felt a lot of body systems normalising such as sweating, body temp, energy levels.
His father has GS and had recently been found to have very low Vit D, looks like this might be common withGS sufferers? maybe they have probs absorbing vit d from foods?
sharon66456 EmilyandBilly
Posted
I always have terrible stomach issues in the winter. They can even start in the summer if we have many days of grey cloud continuously. I become very constipated and my digestion is not good. I can feel dazed and have brain fog. Also I feel fatigued and very down.