Gilbert's Syndrome symptoms have ruined my life.
Posted , 20 users are following.
I found out I had Gilberts syndrome after a bad reaction to antibiotics in june last year and ever since I've been ill. My boyfriend is going to leave me. My sister has stopped talking to me after I didn't go to her wedding because I was ill. I am about to drop out of university a year away from finishing my law degree. I've lost half of my body weight. I eat (at most) twice a day which might be jam on toast or a salad if I have the energy to make one. I have a fever 24/7. My stomach hurts. My eyes hurt. My ears hurt. I've stopped talking to everyone, other than my Mother and younger Brother. Every month a few days before my period, I get severe pain through my stomach, I go yellow and even had a seizure last month. I've had every test a doctor can offer, from blood tests to brain scans to spinal fluid tests, and nothing comes up but Gilberts Syndrome. I feel like I'm going crazy, I looked at myself in the mirror the other day and punched the mirror and cut two of my fingers because I couldn't stand what I've become. I cry every night alone in my apartment because of my fatigue and pain.
Can anyone give me ideas to make myself feel better? I've tried every diet and supplement, is there a drug that reduces the amount of billirubin, anything? I'm certain my problems are from gilberts syndrome, because I only started feeling like this as I went yellow and I've read about other people taking antibiotics that trigger it. Also, are there any doctors in the UK that accept the fact that Gilbert's Syndrome can do this?
Please =(
0 likes, 18 replies
NurseRoz1207 jade63183
Posted
I have an extensive nursing background ad am well aware of Drs. writing off GS as mainly "asymptomatic" or with mild , non -life altering effects-.I know this to be false, and it varies with individuals , especially their diet and eating habits. The lack of energy, symptoms of depression, and anxiety that can come with GS is hardly even broached in conversation, but well documented in the literature. My son was diagnosed with Gilbert's syndrome at 18. He is a vegan/raw mostly and struggles with appetite and generally has a low calorie diet. He has muscle soreness and fatigue he contributes to working out, but I know it is related to the disorder. A higher caloric intake appears to play a role.It is hard when appetite is low, but eating high caloric clean foods and fats help.Avocadoes, olive oil, coconut oil, coconut milk ( organic well sourced) and eating frequently with a lot of water consumption to keep liver flushed. Also high fiber is recommended. **There is a dietary supplement(enzyme) for GS that I found that is recommended as this is due to an enzymatic deficiency = Nattokinase Kapseln
I hope this helps!
Guest jade63183
Posted
How are you now?
Copper-enjoyer jade63183
Posted
You are just another victim of current medical protocols' ignorance. Only thing that surprises me is that your ears hurt. I dont know why really... But regarding other issues - they come from vitamins and metals deficiencies. Your problems with periods are from Copper deficiency. I will speculate about other things - low copper lead to low b12 and b9 levels - therefore problems with blood vessels, especially after good blood loss. Therefore bad circulation in eyes and gut - and it hurts. Add there intoxication and it hurts more. You are lucky because it is always good to drop out from useless educational facility and to get rid of ignorant people in your life as you have to. And only a doctor with gilbert's syndrome that could heal themself can help you - so dont spend time on doctors.