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Gilbert's Syndrome | The Detoxification System | Understanding the Mutations | GS Symptoms | Things That Help & Things To Avoid
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Things That Help, Things To Avoid


Contents: Listings By Symptoms | Things That Help | Things That Arent Working | Things That Make It Worse

This is a work in progress and is being updated regularly. Check back regularly, as I will be steadily improving the site and adding more information.

 

Listings By Symptoms

(coming soon)

Headache
Things That Help

 

Gastroparesis (Digestive Problems)
Things That Help

http://www.medicinenet.com/script/main/art.asp?articlekey=8385&page=2

Treatments

Diet

Emptying from the stomach is faster when there is less food to empty, so smaller, more frequent portions of food are recommended. Soft foods (or preferably liquid) that do not require grinding also are emptied more easily. Moreover, in gastroparesis the emptying of liquids often is less severely affected than the emptying of solids. Fat causes the release of hormones that slow down the emptying of the stomach. Therefore, foods low in fat empty faster from the stomach. In patients with severe gastroparesis, sometimes only liquid meals are tolerated.

Controlling underlying conditions

High levels of glucose (sugar) in blood tends to slow gastric emptying. Therefore it is important to lower blood glucose levels in patients with diabetes to near normal levels with diets and medications. Individuals with a deficiency of thyroid hormone (hypothyroidism) should be treated with thyroid hormone. If bezoars are present, they should be removed (usually endoscopically).

Relieving nausea, vomiting, and abdominal pain

Drugs used to relieve nausea and vomiting in gastroparesis include promotility drugs (see discussion that follows) such as metoclopramide (Reglan) and domperidone, anti-nausea medications such as prochlorperazine (Compazine) and promethazine (Phenergan), serotonin antagonists such as ondansetron (Zofran), anticholinergic drugs such as a scopolamine patch (commonly used for treating motion sickness), drugs used for treating nausea in cancer chemotherapy patients such as aprepitant (Emend), and medical marijuana Marinol.

Drugs used to relieve abdominal pain in gastroparesis include non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Motrin) and naproxen (Aleve), low dose tricyclic antidepressants such as amitriptyline (Elavil), drugs that block nerves that sense pain such as gabapentin (Neurontin), and narcotics such as tramadol (Ultram) and Fentanyl. Narcotic pain relievers as a group tend to cause constipation and slow emptying of the stomach, and, therefore, should be avoided or used with caution among patients with gastroparesis.

High levels of glucose (sugar) in blood tends to slow gastric emptying. Therefore it is important to lower blood glucose levels in patients with diabetes to near normal levels with diets and medications. Individuals with a deficiency of thyroid hormone (hypothyroidism) should be treated with thyroid hormone.

Oral Drugs. There are four oral drugs that are used to stimulate contractions of the stomach’s muscles, referred to as pro-motility drugs. These drugs are cisapride (Propulsid), domperidone, metoclopramide (Reglan), and erythromycin. Cisapride is an effective drug for treating gastroparesis; however, it was removed from the market because it can cause serious and life-threatening irregular heart rhythms. Despite this fact, it can be obtained for use through the pharmaceutical company that manufactures it (Janssen Pharmaceuticals) under a strictly monitored protocol but only for patients with severe gastroparesis unresponsive to all other measures. Domperidone has not been released for use in the US; however, it can be obtained if approval is obtained for its use from the US Food and Drug Administration. The fourth drug, erythromycin (E-Mycin, Ilosone, etc.), is a commonly-used antibiotic. At doses lower than those used to treat infections, erythromycin stimulates contractions of the muscles of the stomach and small intestine and is useful for treating gastroparesis.

It has been demonstrated recently that tegaserod (Zelnorm), an oral drug used for treating constipation in irritable bowel syndrome (IBS), increases emptying from the stomach just as it does from the colon. Further studies will be necessary to determine just how effective tegaserod is and how it compares to the other medications that are available for treating gastroparesis before its use can be recommended.

There are two important guidelines in prescribing oral drugs for gastroparesis. First, the drugs must be given at the right times, and second, the drugs must reach the small intestine so that it can be absorbed into the body. Since the goal of treatment is to stimulate muscular contractions during and immediately after a meal, drugs that stimulate contractions should be given before meals.

Most drugs must be emptied from the stomach so that they can be absorbed in the small intestine. The majority of patients with gastroparesis have delayed emptying of solid food, and pills and capsules, like solid food, do not empty well from the stomach. As mentioned previously, many patients with gastroparesis have less of a problem emptying liquids as compared with solid food. Therefore, liquid medications usually are more effective than pills or capsules.

http://www.infantrefluxdisease.com/gastroparesis.php

About Prokinetics

These drugs work to increase the speed at which stomach contents move through the digestive track.  How they do this depends on the drug itself as listed below.
• Reglan® - U.S. /Maxeran® Canada (Metoclopramide)
This drug is a dopamine antagonist which is beneficial in the GI tract where dopamine inhibits motility.  It stimulates and coordinates esophageal (esophagus), gastric (stomach), pyloric (valve between the stomach and small intestine), and duodenal (small intestine) peristalsis.  Peristalsis refers to the smooth, rhythmic muscle contractions that cause food to pass through the digestive tract. It also works to increase lower esophageal sphincter (LES) tone and stimulates gastric contractions.  Unfortunately, metoclopramide crosses the blood-brain barrier which can cause negative (and if not discontinued-possibly irreversible) side effects such as involuntary muscle spasms, motor restlessness, and inappropriate aggression.  These side effects are more common in long term use (12 or more months).
• Motilium® - (Domperidone) - Currently not available in the U.S.
This is also a dopamine antagonist; however, domperidone does not cross the blood-brain barrier so it does not have the undesirable side effects that metoclopramide may.  It works to increase esophageal peristalsis, LES pressure and gastric contractions.
• Erythromycin - An antibiotic with the side effect of increasing gastric motility.  This is currently being widely used in low doses (not the higher antibiotic doses) for delayed gastric emptying as this does not have the unfortunate side effects that are possible with metoclopramide.
• Urecholine® (Bethanchol) - Urecholine is used to treat urinary and bladder problems.  It helps to empty the bladder and often stimulates gastric motility, increases gastric tone, and restores rhythmic peristalsis improving gastric emptying time.

http://www.gitract.info/stomach-disorders/gastric-emptying.php

Routine treatment for gastroparesis involves a change in dietary habits to control blood sugar levels. A dietary regimen of up to six small meals a day instead of three large meals is generally recommended.

Other treatments for delayed gastric emptying include insulin to control blood glucose levels, medications such as Reglan® (metoclopramide)..

Things That Make It Worse

http://www.gi.org/patients/gihealth/gastroparesis.asp

Medications associated with impaired gastric emptying
Narcotic pain medications
Tricyclic antidepressants
Calcium channel blocking medications
Clonidine
Dopamine agonists
Lithium
Nicotine
Progesterone containing medications

Some foods are more difficult than others for the stomach to digest. Fatty foods take a longer time to digest, as do foods that are fibrous, like raw vegetables.


 

Things That Help

Medications

Imitrex - Headaches

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=79.topic

Lisa
I also have headaches that last for days. I only treat the symptoms. My doctor prescribed Imitrex (which is for migraines) and is very effective. I find this to be a very strong drug, however, helps me get through the day at work

Domperidone / Motilium - Gastroparesis (Digestive Symptoms)

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=102.topic

DianaC
I also suffer from IBS, which isn't related apparently (but I notice a lot of suffers mention IBS). It is very confusing, you don't really know what is GS and what isn't when you aren't feeling well. I was prescribed domperidone which I have to say was just marvelous for about a year and then various things occurred which led to the discovery of extremely high prolactin levels. This is a side effect of domperidone so be careful, don't be fobbed off if you start to have menopausal type symptoms, get your prolactin checked. Flare-ups are cyclic in nature in my experience, especially if you have IBS as well as flare-ups of this are affected by hormone levels…
 
Zrxsheep
Hi a piece of advice for all those on Domperidone.
I have been on Domperidone for 11-12yrs and very recently i have found out after going to a head doc to deal with Anxiety that Domperidone was a tab they used back in the 80's in different institutions this is a bad tablet, apparently it should only be used for 12 weeks max, i have been on it for 11-12yrs and cannot get off it, if you look it up and do research on it it is a group of tablets that can caused tremors and shakes (simular to Parkinisom).

I agree it works at first and the end result fades with time now i cannot function without it and the withdrawel symptons are an exagerated version of why you took it in the first place, this is a nasty drug try others first and use only if there are no other options available to yourself

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

Enoch
My main symptom is nausea (no yellow eyes or abdominal pain). My Doctor prescribes Metoclopramide (Maxolon) and I also take Domperidone (Motillium) . They don't kill the nausea but they do help.

Remeron - Depression

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=102.topic

Paco Deth
(in regards to extreme nausea)
Then he had me try Remeron, ah the holy grail. Now this medicine made a big difference for me for quite a while. Basically the checkup before he prescribed Remeron he couldnt even touch me, if he tried to put that stethoscope near my neck or on my stomach I would gag and almost get sick. So after a few weeks of Remeron I came in with a smile on my face, felt fine, he could punch me in the gut and although unpleasant wouldnt really make me sick. Well Remeron worked 80-90% of the time. High stressful and anxiety instances I still felt kind of sickly but in general I felt pretty good… Now 4 years later it seems that I have become immune to Remeron.

http://www.drugs.com/remeron.html

What is Remeron?
• Remeron is in a class of drugs called antidepressants. Remeron affects chemicals in your brain that may become unbalanced and cause depression.
• Remeron is used to relieve symptoms of depression such as feelings of sadness, worthlessness, or guilt; loss of interest in daily activities; changes in appetite; tiredness; sleeping too much; insomnia; and thoughts of death or suicide.

What should I discuss with my healthcare provider before taking Remeron?
• Before taking Remeron, tell your doctor if you have liver disease;

Metoclopramide / Reglan / Maxalon / Maxeron - Gastroparesis (Digestive Symptoms)

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=102.topic

DianaC
Maxalon is very good for the nausea if its really extreme, but I find sipping mineral water (sparkly or still) with some slices of lemon or lime, or in summer sprigs of fresh mint, can be very helpful.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

Enoch
My main symptom is nausea (no yellow eyes or abdominal pain). My Doctor prescribes Metoclopramide (Maxolon) and I also take Domperidone (Motillium) . They don't kill the nausea but they do help.

Dimenhydrinate / Gravol - Nausea, Vomiting, Dizziness

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

18eeyore
my mom is a nurse and she told me about the " Anti - Nauseant pills (dimenhydrinate tablets usp) they help with Nausea, vomiting all though I don't get sick when I feel naseased they also help with dizziness.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

ashley
I have recently been diagnosed with GS at the age of 34. I started with the severe nausea about a year and a half ago, when my daughter was almost 1. It was so bad that i couldn't get out of bed until i took gravol. i have lost quite a bit of weight and am unable to gain it back.

Compazine - Nausea, Vomiting, Anxiety

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

July15
I suffered from nausea so bad for 7 years that I had to take Compazine and other anti nauseant type medication.

Phenobarbital - Reduces Bilirubin

While phenobarbital does reduce bilirubin levels, there are numerous side effects and it is addictive. Since there are safer and less expensive ways to reduce bilirubin levels, phenobarbital would not be my first choice.

PERSONAL: Gilberts Web Forums

Katheryn23
Lots of people reported taking it (phenobarbitol) and my gastro said it is supposed to reduce jaundice.
 
Azvessey
I used to used the anti-convulsant phenobarbital up until recently but have now changed to a similar drug called Clonazepam which has somehow tripled the variety of foods which I can eat without regret. I still use a small additional dose of phenobarbital, 15mg, as well as the Clonazepam if I have enjoyed a particularly fatty meal. I combine the Clonazepam with a low carbo diet where and when possible.

It has been reported that Phenobarbital taken at a rate of around 20 to 30 mgs a day will reduce bilirubin levels by about one third max. Strict compliance to really inconvenient but healthy and life prolonging diets will result in far more personal vitality and balance.
I just like to use the pharmaceuticals as occasional props so that I can get out occasionally and be like a normal healthy, gracefully aging person rather than the disabled pensioner that I have become. I have for 30 years encountered a complete lack of helpful advice offered to me by the majority of the medical advisors who have tried to convince me that GS (and it's accompanying illnesses) was just another variance of normal.
For me phenobarbital produced fairly quick results and provided that the 30 mg a day limit is not exceeded the duration of useful affect is not shortened. Most sufferers will benefit from a supplement of between 15 to 30 mgs a day from my experience.
 
Floraisles
Yes it does help, my son uses it from time to time. He usually takes 60mg at night and 30mg in the morning for 10 days only. This is enough to clear the symptoms for 6months to about 2 years. When he was younger he needed a course roughly every 6 months, but after 20 years he only requires it every 1-2 years.
 
Imgeha
If you do a google search on phenobarbital it comes up with some pretty alarming stuff, which suggested to me that this is not a drug to be messed around with or taken lightly. I personally would prefer to be under the guidance of a doctor ...
 
Mnol
My doctor tried me on Clonazepam 10 mg. and all I wanted to do was sleep, couldn't stay awake ? I usually have problems with most drugs, so this didn't surprise me. I still have my bad stomach and seems it will always be that way. Just have to watch what I eat.
 
Branwelt
yes it works. I took it (phenobarbitol) only for 5 days in a small dose.
But sometimes I had weird head feelings.
 
My UCB before Pheno was 4,7mg/dl and after 5days taking pheno I had 2,8mg/dl UCB . And now after one week without phenobarbital my UCB decreased to 2,2 mg/dl. 2,2 is not worse. Under 2,5 the symptoms of Gilbert syndrome do not exist. but the question is how long can this level be hold?? Phenobarbital has a half-life period of (96h!!!!!) . this means that after one week without pheno, i have still small amounts of pheno in my blood.

http://72.14.203.104/search?q=cache:Qe61E6gOVR4J:www.kumj.com.np/past/Vol1/issue3/vol1_187.pdf+%22A+case+report+of+Gilbert+Syndrome.%22&hl=en&gl=us&ct=clnk&cd=1&client=firefox-a

Phenobarbital and other enzyme inducers of the bilirubin-UDPGT  system will normalize plasma bilirubin in patients with Gilbert syndrome.

http://www.ercp.ucla.edu/pages/info/symptoms/unconjugated-hyperbilirubinemia.html

 Phenobarbital works by inducing the activity of bilirubin UGT-1. (this is used in treatment of those with Crigler-Najjar Symdrome)

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=139.topic

yates66
I take 120mg of Phenobarbitol 60 at night and 60 in the morning. It has brought my bili down quite a bit but my eyes are still yellow, mainly in the afternoons... I have been taking Pheno for about two years for my Gilberts. It wasnt easy getting my doctor to prescribe it.I told him I was sick and tired of people asking me if I had hepititus and I brought in case studies were they treated people with our condition with pheno.If you go to google and type in phenobarbitol and gilberts you will find plenty of amo to take to your doctor. The only side effects I have are delayed ejaculation because pheno is a anti convulsant.When I first started taking it I got a little sleepy after I took a dose but that soon went away.Its a very cheep drug and it does help with the jaundice.

Doug
As far as pheno, that is a really tough drug on your sytem. Best to go another route if possible. Also if you live in the US, you may get in some major trouble importing it.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=23.topic

SumariMike
I have heard that the effects are far outweighed by the side effects which are much more unpleasant than Jaundice and lethargy.

azvessey
I prefer to use diet to control my GS health but I still pop a 30mg tablet of phenobarbital occasionally when I've eaten (or drunken) something that didn't agree with my liver. I honestly think that phenobarbital is a wonder drug for people with GS but in my opinion there is no substitute for a healthy, low sugar, low carb, high protein diet... At 20mg a day I didn't didn't notice any undesirable side effects

1) How long have you been taking phenobarbitol?
About 18 months.
2) Are you still taking it? If so, what dosage? 20 mg?
One 30mg tablet one day, half a 30mg tablet the second day, this results in an average of 22mg by the time I lose a few crumbs in the cutting.
3) Did that dosage help in lowering your bilirubin?
Research indicates that doing this will lower your bili by around 30% i.e. I was 30-40µmol/ml/day so pheno dropped me to around 22µmol.
4) If you are not taking phenobarbitol now, did your bilirubin stay low or rose after you stopped?
No, I stopped pheno when my I sorted my diets and found a way to combine them correctly. My bili will return to its usual upper limits immediately upon stopping the pheno or abandoning the diets.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=42.topic

Floraisles
My son was diagnosed with GS adout 22 years ago -- he had all the symptoms described by on these pages i.e. abdominal pain, fatigue, nausea, irritability. After long discussion with our GP at the time it was decided to treat him with Phenobarbitone tablets 30mg -- 2tablets at night and 1 tablet in the morning for 10 days only. It worked like magic! At first he required a repeat course roughly every 6 months or so but now after 20 years he only requires a course every 1-2 years.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=152.topic

ddterrell
I just turned 20 in June an the doctor told me that i have gilberts syndrome about 6 months ago. He prescribed me some phenobarbitial but that did not help at all.

http://www.drugs.com/mtm/phenobarbital.html

What is phenobarbital?

• Phenobarbital is in a class of drugs called barbiturates (bar bi TURE ates). Phenobarbital depresses the activity of your brain and nervous system.
• Phenobarbital is used to induce sleep, to treat insomnia (for up to 2 weeks), to prevent seizures, and to treat seizures that are already occurring.

Who should not take phenobarbital?

• Do not take phenobarbital if you have
     · porphyria,
     · liver disease
• Phenobarbital is in the FDA pregnancy category D. This means that it is known to harm an unborn baby. Do not take phenobarbital if you are pregnant. However, if you take phenobarbital to control seizures, do not abruptly stop taking this medication, because a seizure could occur and this could be more harmful to an unborn baby. Talk to your doctor about treatment during pregnancy.

What are the possible side effects of phenobarbital?

• If you experience any of the following serious side effects, stop taking phenobarbital and seek emergency medical attention or call your doctor immediately:
     · an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives);
     · a fever or a sore throat;
     · sores in your mouth;
     · broken blood vessels under your skin; or
     · easy bruising or bleeding.
• Other, less serious side effects may be more likely to occur. Continue to take phenobarbital and talk to your doctor if you experience
     · drowsiness or dizziness;
     · confusion;
     · agitation, irritability, or excitability;
     · nightmares, nervousness, or anxiety;
     · headache; or
     · "hangover" effect (drowsiness the day after a dose).
• Phenobarbital is habit forming, which means that you can become addicted to it. Your doctor will want to monitor how much medicine you are taking. Your dosage may have to be reduced slowly to prevent withdrawal effects.

Clofibrate / Abitrate / Atromid-S - Reduces bilirubin, cholesterol

This is a cholesterol-lowering drug that also lowers unconjugated bilirubin by 65%.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6697662&dopt=Abstract

Effect of clofibrate on the metabolism of bilirubin, bromosulphophthalein and indocyanine green and on the biliary lipid composition in Gilbert's syndrome.

Clofibrate (20 mg day-1 kg-1 body weight) given orally for 2 weeks to 18 subjects with Gilbert's syndrome reduced the total serum bilirubin concentration from 44.4 (22.1-71.7) mumol/l (median, range) to 15.0 (7.9-28.9) mumol/l, mainly by decreasing the 'indirect' fraction to 34.5% of pretreatment values. In contrast to treatment with phenobarbitone, clofibrate did not change the ratio of bilirubin mono- to di-conjugates in bile... As expected, the cholesterol saturation of bile increased in all subjects. These results suggest that clofibrate increases mainly the glucuronidation of bilirubin, promoting as such the overall hepatic transport in Gilbert's syndrome.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=179.topic

yates66
Has anybody tried clofirate? I read a couple of articles that say it lowers bili. I know in the interduction page they say its bad for Gilberts so Im a little confused.
www.emedicine.com/med/topic1066.htm
www.clinsci.org/cs/066/cs0660389.htm

djk217
Yes, I have - it works on jaundice pretty well. I'd say I'm 90% cleared up. I don't think it is bad for people with Gilbert's - my Dr. has assured me at least. 600 Mg, twice daily.

dmy222
some sites don't recommend this drug citing the fact that it's poorly metabolised.

However there are medical websites stating how beneficial this drug is for gilberts syndrome
http://www.bioscreenmedical.com/index.html?members/gilberts.html
www.emedicine.com/med/topic1066.htm
http://www.ijppediatricsindia.org/article.asp?issn=0019-5456;year=2005;volume=72;issue=2;spage=123;epage=126;aulast=Mohammadzadeh

It maybe time to revisit the doctor now that there's a drug with seemingly less side effects than phenobarbitol that appears to clear jaundice.

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202150.html

You may have read or heard about a study called the World Health Organization (WHO) Study. This study compared the effects in patients who used clofibrate with effects in those who used a placebo (sugar pill). The results of this study suggested that clofibrate might increase the patient's risk of cancer, liver disease, and pancreatitis (inflammation of the pancreas), although it might also decrease the risk of heart attack. It may also increase the risk of gallstones and problems from gallbladder surgery. Other studies have not found all of these effects.

The presence of other medical problems may affect the use of clofibrate. Make sure you tell your doctor if you have any other medical problems, especially:
• Gallstones or
• Stomach or intestinal ulcer—May make these conditions worse
• Heart disease or
• Kidney disease or
• Liver disease—Higher blood levels may result and increase the risk of side effects
• Underactive thyroid—Clofibrate may cause or make muscle disease worse

Gemfibrozil - Reduces Bilirubin, Cholesterol

This is another cholesterol-lowering drug that also lowers bilirubin.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=184.topic

djk217
Gemfibrozil - it's a cholesterol lowering drug, but if you ask your Dr. for it, he may already know, or will know that it lowers bilirubin. The thing is, you're pretty young, so they may try to resist you taking it, but I believe if you try it, it will clear up your eyes by about 90%. I had to sign a special consent form that stated I was using it for a different purpose than what it is intended for - since I don't have high cholesterol and I would bet at your age, you would not either. BTW - I take two 600 Mg pills a day. You're supposed to take it about 1/2 hour before eating for it to be most effective.

Dextromethorphan - Depression, Brain Fog, Headache, Fatigue

This worked really well much of the time to counter the effects of my allergy-induced emotional, behavioral, and social symptoms. For more information about it and to find out why exactly it worked, look at the Dextromethorphan section under Allergies.

Clonazepam / Klonopin - Panic Attacks

It is a highly potent anticonvulsant, amnestic and anxiolytic.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=123.topic

azvessey
I have used this drug (clonazepam) at up to 8mg per day at which point I start to lose my 'edge'. 2mg per day is about the smallest dose I can take and still gain some relief. I don't actually suffer from depression as such and I only use a low dose antidepressant to help with sleep. In my opinion clonazepam is a very helpful drug for controlling a number of anxiety/depressive-like conditions.

Amitriptyline / Elavil / Tryptanol / Endep / Elatrol / Tryptizol - Depression

This is a tricyclic antidepressant.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=49.topic

ALS02
I was prescribed Amitriptyline for my current tingling sensations and that also helped the 'blues'. Everything now seems under control and I am much happier.

Lexapro - Depression

This is a SSRI antidepressant.

PERSONAL: Gilberts Web Forums

jaundicedjim
Recently, I had my colon checked out by colonoscopy (don't worry, it wasn't too bad since I was knocked out for it--just the awful stuff they make you drink to clear you system out--yuck!). The doctor confirmed it was irritable bowel syndrome, and that the panic attacks were triggering it and vice versa. Since then, I've been taking fiber supplements (4g per day, just a little), and I'm on Lexapro 10mg. This has helped sooooo much!!!

Penicillin - Reduces Bilirubin

Several people have had bad reactions to penicillin, and for many people antibiotics triggered the first onset of Gilbert's Syndrome symptoms. My experience with Rocephrin and Omnicef was that it caused a significant increase in my intolerance to carbs, possibly from candida getting into my blood. I would not recommend this as a good way to reduce bilirubin. Not by a long ways.

http://www.gilbertssyndrome.org.uk/Gilbert's%20Syndrome%20All%20About%20Bilirubin.html

Drugs that decrease bilirubin measurements include barbiturates, caffeine, penicillin and high dose salicylates.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=196.topic

theredbulljunky
Penicillin!!!Yep thats it!but why you ask,well im glad you asked my fellow sufferers.When i was in hospital a few years back,with a bad leg wound,i was put on a drip and given penicillin,now i wasnt even thinking about my eyes at the time,but when i came out.."WOW"!!My eyes were whiter then they have ever been in my life,i coudnt believe it,now for ages after i just put it down to being on a drip,having water going into me all the time,but no matter how much water i drink,it only ever helps me marginely.So i always said to myself i will try penicillin one day for a period,and that time is now.I Have tried virtually everything out there and be surprised to meet someone who has tried more things,none of which have really helped… i did look up penicillin and to suport my suspicions it turns out it is supposed to reduce billi levels

Hydrocortisone / Cortisol - Reduces Swelling, Immune Response

Hydrocortisone is a steroid. I would be wary of this one. First, this may be a problem unrelated to Gilbert's Syndrome. Second, there is evidence that cortisone aids the growth of candida, which may be related to Gilbert's Syndrome. If so, this would do more harm than good. More evidence is needed, and this shouldnt be used unless a blood test reveals low cortisol.

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=64.topic

Lisa1702
But one thing that did show up in my blood tests results was that my level of cortisol in my body was too low. This is the hormone/steroid which regulates blood sugar and energy levels. I was put on a course of hydrocortisone (cortisol tablets) for 6 weeks – this made a huge difference, my symptoms reduced by 75%.
 
I have now come off the tablets (long term side effects are not good, so it’s best to come off them as soon as possible) am back at work part time and have adjusted my lifestyle to try and minimalism the effects of ME. Because I am naturally low on cortisol I do still have problems with low blood sugar; so I have cut out chocolate and things high in sugar, reduced the amount of stimulants I have (tea, coffee, etc), cut down on alcohol (alcohol does make me much worse, but I’m 24 and have to have some fun!), and eat a high carb diet – I have to eat every 2-3 hours or I start to get faint, cold, shaky etc through low blood sugar.

Supplements

Royal Jelly - Fatigue

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=56.topic

DaveH439
Liquid Royal Jelly seemed to do me good but the brand I used was taken off the market when there was a scare with Chinese honey production. I feel that the B vitamins in the liquid Royal Jelly played an important part in the product. I didn't get the same reaction with vitamin B tablets though.

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DaveH439
I found relief from the fatigue by using liquid Royal Jelly. Best results for me are after at least one to two weeks and I take it for a month at a time then have a break for a while. The product I use is Ortis brand and is called Api Regis Liquid Royal Jelly. Have a look on my name for other posts and the details of the product are listed on one of them. The backache and joint pains seemed to improve when I took Zinc and Selenium capsules.

Livatone Plus - Reduces Bilirubin, Fatigue, Liver Pain, Digestive Problems

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kdhsgf
I have spoken to some ppl that have found benefits in taking Livatone Plus, which has apparently subsided their yellowness quite considerably

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cstarr
Has anyone tried Livatone? I bought some from the internet two weeks ago and have been taking it for just under a week now (the order took ages to come through) I've noticed a dramatic change in how I'm feeling now. I was diagnosed as having GS last November and am currently waiting to see a stomach specialist (stomach problems since January this year) My doctor doesn't believe that the two are linked but my symptons since taking livatone have almost disappeared. I won't go on about the stomach problem as i don't know what the problem is yet but liver wise i've noticed that the toxic feeling has nearly vanished, i have more energy, jaundice symptoms gone. I used to find that i would have a build up whereby i would feel very yuk for a week and then would get jaundice, lack of appetite, liver pain, no energy - almost flu like symptons. Diet didn't really help - i've been keeping a food diary for the last month and a half (due to stomach problem) There are no major diet changes that point to an attack of gs although i am much healthier now than back in November when first diagnosed which is good.

Everyone's symptons vary depending on the individual but i have found that livatone has really helped me feel tonnes better. The only side effect that i have noticed after taking them for a week is green wee (usually in the morning but this returns to normal later in the day) It also makes me feel full up quite quickly so i have noticed a bit of a weight loss (apparently there is something in livatone which aids weight loss - taurine) i have to make sure that i'm eating enough at the right times of the day.

I'm on livatone plus... I've seen a def improvement and have just started swimming again - i didn't have the energy before.

(later) I've recently got back from holiday (lots of trekking in Venezuela) I had about 6 days when I couldn't sleep so had an attack of jaundice and liver pain but I know that it would have been much worse without the tablets.

kdhsgf
here is a link on it: http://www.thexton.com.au/product/Livatone__Plus__-__240__Capsules

Well just finished my first week on it... and I do feel better... on the first day I did notice nausea, but later dissipated... It seems to work quite well... although I get those headaches when I haven't gotten good sleep...

(later) I have been taking the powder twice a day before a meal... and I have not felt sick in ages... I feel really good... I don't get the flu like symptoms as much and my sleep is hardly broken... I stand by this product, it's truly worth having a go...

imgeha
Been taking mine for two days now, and am hopeful. The headache went the first day, but came back with a vengeance the next day, along with nausea - detox I presume. Today I feel better again.

darianne99
Can I just say I am amazed!! I have been taking these pills and for the first time in years the whites of my eyes are white!! And to top it off I have the flu as well. Which would make me even have yellower eyes than normal. Not sure about the more energy as I am flued up and have three children but will keep everyone posted. Still feel nauseous as well.

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dmy222
One of the main ingredients is milk thisle, only tried for about a week (imported) and got the same side effects as milk thistle, heavyness tiredness e.t.c.

Me:

I'm glad this is working for some people. I just looked at the ingredient list for the Livatone Plus, and it's got Nicotinamide, otherwise known as Niacin or Vitamin B3, which is known to raise bilirubin levels.

It's possible the rest of the good stuff in there more than makes up for it. Just for reference, here's the contents of Livatone PLUS:

Glutamine
Glycine
Taurine
Cysteine
Vitamin C
Vitamin E
Natural Carotenoids
Thiamine (Vitamin B1)
Riboflavine (Vitamin B2)
Nicotinamide (Vitamin B3)
Calcium Pantothenate (Vitamin B5)
Pyridoxine (Vitamin B6)
Cyanocobalamin (Vitamin B12)
Folic Acid
Biotin
Inositol
Lecithin
Zinc
St Mary’s Thistle (Milk Thistle)
Cruciferous Vegetables
Green Tea

And here are the contents of Livatone (the original):
Psyllium
Taurine
Dandelion
Globe artichoke
St Mary’s Thistle
Slippery Elm Bark

Artichoke Extract & Sarsaparilla Root - Reduces Bilirubin, Fatigue, Inflammation, Loss of Appetite, Weakness

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hayesmoore
I thought Imight tell you about 2 new herbs which I am trying out myself. These herbs are extracts of Artichoke (a tasty delicacy) and Sarsaparilla root. Apparently both of these herbs have been used for a long time to treat patients of liver disease. They somehow regenerate and protect the liver and help the flow of bilirubin.

You can find this page at www.extremehealthusa.com/press6.htm

The following are the most imprtant points:

-The herbs were taken for between 30 to 90 days.
-There was between 25% and 39% reduction in bilirubin.
-There was an increase of between 9% and 37% increase in serum albumin levels.

I dont know what dosage was used, so I suggest just using whatever the reccommneded dose is. I am using 425mg of Sarsaparilla (1 capsule in morning) and 600 mg of Artichoke (1x300mg in morning 1x300mg at night).

(me: later) I have been using the Artichoke and Sarsaparilla for just 3 days now and already I am seeing very good results. I now have no yellowing of the eyes at all and I am feeling great!!!

Here is the dosages:

1 x 425 mg of Sarsaparilla (capsule) in the morning
1 x 300 mg of Artichoke (tablet) in the morning
1 x 300 mg of Artichoke (tablet) at night

The Sarsaparilla I bought in Holland and Barrett and because Artichoke is quite expensive there, I bought that online at www.zipvit.co.uk. Their prices are v good and they deliver internationally. They do not seel Sarsaparilla though.

The Artichoke and Sarsaparilla combination for me seems to work far quicker than St Johns Wort did, which took at least 3 to 4 weeks to see any improvement.

http://www.extremehealthusa.com/press6.htm

PHYSIOLOGY
· Extracts of artichoke leaf have been found to stimulate bile production in the liver and bile release from the gall bladder and thus found effective in helping to eliminate toxic substances normalizing blood cholesterol levels lowering blood lipids and providing liver protective qualities.
· The root of the sarsaparilla plant is considered by European physicians to be an alterative tonic blood purifier diuretic (increases urine output) and diaphoretic (increases perspiration).

INTERPRETATION OF RESULTS OBTAINED IN A DOUBLE BLIND TEST MADE IN THE GENERAL HOSPITAL MEXICO WITH THE PRODUCT LIVER SUPPORT ON PATIENTS HAVING CHRONIC ALCOHOLIC HEPATIC DISEASE.

ASCITES- Effusion and accumulation of serous fluid in the abdominal cavity. experimental group (Liver Support) experienced a 28.8% reduction of ascites while the placebo group experienced no change The.

ENCEPHALOPATHY- a DEGENERATIVE DISEASE OF THE BRAIN. Hepatic encephalopathy- a condition usually occurring secondarily to advanced disease of the liver. It is marked by disturbances of consciousness that may progress to deep coma (hepatic coma) psychiatric changes of varying degree flapping tremor and fetor hepaticas. Also called portal-systemic encephalopathy. Patients on Liver Support experienced a 34.55% reduction of hepatic encephalopathy. The placebo group experienced a 5.5% reduction.

WEAKNESS- Lacking physical strength or vigor marked by asthenia atony cardiasthena enervation fatigue and lassitude. The Liver Support group experienced an 83.45% decrease in the incidence of weakness while the placebo group reported no change.

ANOREXIA- Loss of appetite. Seen in depression malaise commencement of fevers and illness also in disorders of the alimentary tract especially of the stomach and as a result of alcoholic excess and drug addiction. Anorexia was diminished by 86.07% in the Liver Support group. There was no change in the placebo group.

TOTAL BILIRUBIN LEVEL - The predominant pigment of human bile. Total serum bilirubin may be increased in cirrhosis of the liver and acute viral hepatitis. The Liver Support group obtained 25.11% reduction in bilirubin whereas the placebo group had a 7.2% increase.

http://www.drugdigest.org/DD/PrintablePages/herbMonograph/0,11475,4129,00.html

In the United States, sarsaparilla is sold primarily as an oral remedy for skin conditions such as psoriasis. It is believed that chemicals in sarsaparilla may attach to endotoxins (the remnants of bacterial cells) that are common in individuals with psoriasis and certain other conditions. By eliminating or reducing the amounts of endotoxins in the body, sarsaparilla may help to relieve the condition.

Orally, sarsaparilla also has weak diuretic and laxative effects, which may make it useful in promoting the loss of excess water from the body and also in treating mild constipation. It may promote sweating, which may help to reduce fever. Sarsaparilla may also contain chemicals that act as a mild expectorant -- a substance that may loosen bronchial mucus and promote coughing. However, none of these effects have been verified through clinical studies and they may vary greatly depending on the amounts and type of sarsaparilla that is used.

Some anti-inflammatory effects associated with sarsaparilla made it useful in early medicine for treating arthritis and related conditions.

D-Glucarate - Increases Glucuronidation

http://www.lef.org/protocols/prtcl-143a.shtml

A phytoextract, D-glucarate, has been shown to support the glucuronidation pathway by inhibiting the activity of beta-glucuronidase. D-glucarate may be obtained naturally by emphasizing apples, grapefruit, broccoli, and brussels sprouts in the diet and by supplementing with calcium-D-glucarate and vegetable concentrates. According to data released from the University of Texas M.D. Anderson Cancer Center, D-glucarate inhibited beta-glucuronidase by 57% in the blood, 44% in the liver, 39% in the intestines, and 37% in the lungs, thus protecting the action of the glucuronidation pathway (Dwivedi et al. 1990).

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel

Calcium D-Glucarate, a component of Tyler’s Detoxification Formula, works to prevent the action of beta-glucuronidase in the intestine. Beta glucuronidase enzymatically can deconjugate glucuronidation bound toxins, releaseing the toxins and allowing them to be reabsorbed in the intestines. {Ackerson, 312}. Blocking this action allows glucuronide-bound xenobiotics to be successfully eliminated from the body.

Creatine - Fatigue?

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neiltwy
I have recently started taking Creatine monohydrate as a training aid and many of the symptoms I had with GS seem to have either reduced in severity or gone altogether. I have also been taking an energy drink through sport and the whole training thing has become a joy.

http://www.drugs.com/mtm/creatine.html

• Creatine is produced naturally in the kidney, liver, and pancreas of humans. Creatine is also supplied in meat and fish. Most creatine in the body is stored in the muscles, in the form of phosphocreatine. Creatine is a quickly available source of energy for muscle contraction. Creatine is also involved in muscle growth.
• Creatine has been used to enhance athletic performance.

Digestive Enzymes - Digestive Problems

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SumariMike
My main problem with GS seems to be digestion. I just have the worst time digesting food. I ate like I ate as a kid - lots of food, lots of gusto, who cares what I ate. I got fed up; felt like I was going to burst all the time. I always felt better taking an antihistamine with my food; curb the allergies. Finally, I went to a nutritionist to see what the hell was wrong with me. I did a fast for 3 days and nearly passed out at the end of it! Did 3 weeks of food allergy testing. Turned out I wasn't allergic to ANYTHING in small quantities. However, I had a lot of trouble digesting protiens. Too much would cause discomfort again. My nutritionist suggested digestive enzymes. THEY MADE ALL THE DIFFERENCE IN THE WORLD!! Someone on the original board mentioned this might be related to leaky gut syndrome.

(different post) I take digestive enzymes with my meals. It's made me feel SO much better. The main point of this is to stem off food particles that are too large. If you don't break down all your food and you have holes in your intestines that allow those larger particles to get through (such as leaky gut syndrome), your body thinks that food is an invader. It sends the "invader" to the liver to be detoxified and eliminated from the body.
 
Here in Texas there's a store called Whole Foods. I believe you can even reach them via the web. The enzymes I take are called WholeZyme. They are in capsule form and contain the following ingredients: Bromelain (from Pineapple 120GDU), Papain (from papaya 600,000 FCCPU), Protease 3.9 (from aspergillus oryzae 10 SAPU), Amylase (from aspergillus oryzae 400 DU), Lipase (from Aspergillus niger 60 FCCLU), Protease 4.5 (from Aspergillus oryzae 400 HUT), Lactase (from Aspergillus oryzae 20 ALU), Cellulase (from Trichoderma longbrachiatum 10 CU), Hemicellulase (from Aspergillus niger 10 HCU).

Pancreatic Enzymes - Abdominal Pain

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TracyMWall
I have had terrible stomach discomfort for over one year. There have not been any "trigger" foods that made my eating experience more or less tolerable. After attempting to change my diet, take milk thistle, and exercise, I have found little comfort for this particular symptom of GS. Eating was a struggle, and most often I would end up sprawled out on a couch, unable to even touch my stomach and feeling extremely sick. This would last for several hours, result in tears, discomfort, and fatigue.

Thankfully, I have consulted a nutritionalist who suggested I take Pancreatic Enzymes to aid the stomach in digestion. I bought them a day or two later, and take one (500 mg) tablet immediately after eating. I found INSTANT relief, and I now have very little discomfort after eating. I can consume three full meals a day, and as long as I take the enzyme tablet I feel GREAT!!

The only side effect I have from using these capsules is that I have heart burn symptoms afterwards. However, this problem is far less difficult to handle than the intense abdominal pain that I've lived with for over a year.

Protectiver - General

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petebray
I have since found something that works for me. I found a company called Neways that makes totally natural products, not tested on animals and they are led by some of the worlds top pharmicists. I started on a regime of three different products that are amazing but the one that really helps my liver is called Protectiver which has several natural derivetives in it (including Milk Thistle) which stimulate and protect the liver and stimulate bile production.

http://www.itsyourlife.uk.com/healthy_liver.html

Protectiver Ingredients (per tablet):
Vitamin A, Vitamin C, Vitamin E
Proprietary Blend 315.00 mg, Blessed Thistle, Dandelion Root, Milk Thistle Extract 70%

Amino Acids

Glutamine, Glycine, Taurine, Cysteine - Enzyme Support

http://www.liverdoctor.com/Section3/15_livertonics.asp

AMINO ACIDS
Specific amino acids are essential for the liver to break down toxins and drugs and also for the efficient metabolism of nutrients by the liver.

Glutamine
This amino acid is required for phase two detoxification in the liver and is required in increased amounts by those who consume excessive alcohol. It is able to reduce the craving for alcohol. Glutamine supplementation is helpful for intestinal disorders such as peptic ulcers and leaky gut syndrome. Leaky gut is the term used to describe an inflamed condition of the lining of the bowel, which makes the bowel too permeable, so that toxins and incompletely digested food particles can be absorbed from the bowels directly into the liver. This increases the workload of the liver and may cause many health problems. Glutamine is used as fuel by the brain and by the lymphocytes (white blood cells). It is essential for the lymphocytes to fight viruses such as hepatitis B and C.

Glutamine is converted in the body into glutamic acid, which, along with the amino acids cysteine and glycine, is converted into the powerful liver protector glutathione. Glutathione is essential for liver phase two conjugation reactions used during detoxification of drugs and toxic chemicals.

Glycine
This amino acid performs more biochemical functions than any other amino acids. It is required for the synthesis of bile salts, and is used by the liver to detoxify chemicals in the phase-two detoxification pathways.

Taurine
Inadequate levels of taurine are common in those patients with chemical sensitivities, allergies and poor diets. Taurine is the major amino acid required by the liver for the removal of toxic chemicals and metabolites the liver to detoxify environmental chemicals such as chlorine, chlorite (bleach), aldehydes (produced from alcohol excess), alcohols, petroleum-based solvents and ammonia. Recent findings are demonstrating that taurine is one of the major nutrients involved in the body's detoxification of harmful substances and drugs, and should be considered in the treatment of all chemically sensitive patients. Taurine is helpful for fatty liver, high blood cholesterol and gall bladder problems, alcohol withdrawal, hepatitis and jaundice. Taurine is a sulphur bearing amino acid that is present in all good liver tonics for very good reasons. It is required for the healthy production of bile, and the liver uses it to conjugate toxins and drugs to excrete through the bile. It helps the liver to excrete excessive cholesterol out of the body through the bile, and thus is an aid to weight control and cardiovascular health. Doses required can vary from 50 to 2000 mg daily. It is free of side effects but should not be taken on an empty stomach in those with stomach ulcers. It is found in animal protein such as meat, seafood, eggs and dairy products but not in vegetable protein. Taurine is often deficient in strict vegans. Taurine regulates the transport of minerals across cell membranes and stabilises the electrical properties of cell membranes. For this reason, a deficiency of taurine has been linked to epileptic seizures, and combined with vitamin B 6, it has a useful anti-seizure effect in epileptics. It is made from two other amino acids methionine and cysteine.

Cysteine
Cysteine is an amino acid that contains sulphur, and is needed by the phase-two detoxification pathway. It is a precursor of glutathione, which is needed to breakdown pollutants and toxins and has powerful antioxidant effects. Aldehydes, which are toxic breakdown products of alcohol, rancid fats and smog, are partially neutralized by cysteine. A study reported that large doses of acetaldehyde (derived from alcohol), killed 90% of the mice that consumed it. A control group of mice were primed with vitamin C, vitamin B 1 and cysteine, and were then given the equivalent amount of acetaldehyde that had killed 90% of the other mice. None of the supplement-primed mice in the control group died.

SAMe (S-Adenosylmethionine) & Methionine - Reduces Bilirubin, Estrogen, Increases Bile Transport, Enzyme Support, Mood

SCIENCE: National Library of Medicine

Effect of different doses of S-adenosyl-L-methionine (SAMe) on nicotinic acid-induced hyperbilirubinaemia in Gilbert's syndrome.

S-adenosyl-L-methionine (SAMe) has been shown to increase hepatocyte membrane fluidity thereby relieving signs of oestrogen-induced cholestasis. S-adenosyl-L-methionine might therefore prove effective in improving the efficiency of the transport of organic anions such as nicotinic acid (NA) and bilirubin which is impaired in Gilbert's syndrome (GS). In this study the effects on the metabolization rate of NA and bilirubin of two dosages of SAMe were evaluated in respect to placebo in ten male inpatients (mean age 24 years, range 16-31) with GS. Each patient received both SAMe (800 and 200 mg/day, respectively) and placebo treatment i.v. over a period of 10 days. The NA test (5.9 mumol/kg b.w. i.v.) was carried out in the same volunteers after each treatment. Unconjugated bilirubin (UCB) levels were significantly lower (p less than 0.01) after 800 mg/day SAMe than after placebo while the lower dosage of SAMe did not affect UCB values. The bilirubin time curve concentration, expressed as area under the curve (AUC), was significantly reduced (p less than 0.01) after 800 mg SAMe in comparison with the values obtained after placebo and 200 mg SAMe. Also plasma NA half-life was significantly reduced (p less than 0.01) by the higher dose of SAMe in respect to placebo and not by the lower dose.

In Short: SAMe has been shown to improve efficiency in transporting nicotinic acid (niacin) and bilirubin at 800mg/day. It also relieves signs of estrogen-induced cholestatis, a condition where bile cannot flow from the liver to the duodenum.

http://tuberose.com/Liver_Detoxification.html

Methylation involves conjugating methyl groups to toxins. Most of the methyl groups used for detoxification come from S-adenosylmethionine (SAM). SAM is synthesized from the amino acid methionine, a process which requires the nutrients choline, vitamin B12, and folic acid. SAM is able to inactivate estrogens (through methylation), supporting the use of methionine in conditions of estrogen excess, such as PMS. Its effects in preventing estrogen-induced cholestasis (stagnation of bile in the gall bladder) have been demonstrated in pregnant women and those on oral contraceptives. In addition to its role in promoting estrogen excretion, methionine has been shown to increase the membrane fluidity that is typically decreased by estrogens, thereby restoring several factors that promote bile flow. Methionine also promotes the flow of lipids to and from the liver in humans. Methionine is a major source of numerous sulfur-containing compounds, including the amino acids cysteine and taurine.

In Short: SAM also inactivates excess estrogen via methylation. Is S-adenosylmethionine (SAM) the same as S-adenosyl-L-methionine (SAMe)?

http://www.diagnose-me.com/cond/C319040.html

Methionine, administered as SAM, resulted in a significant decreases in serum bilirubin in patients with Gilbert's syndrome in a recent clinical study. SAM has been used with favorable results in a variety of other chronic liver diseases. TMG also converts to SAMe while being considerably less expensive.

http://www.diagnose-me.com/treat/T335931.html

Methionine is an essential amino acid which contains sulfur. It is found in animal products, and is important to control fat levels in the liver and the arteries. In the absence of high animal product intake, there is a danger of not getting enough methionine. This is the most common dietary deficiency seen in vegetarians.
 
Plant foods contain methionine as well: beans, seeds, onions, peanuts, lentils, and some grains. Methionine prevents fat build-up by assisting in the breakdown of fats; it detoxifies the digestive system; it is a powerful antioxidant; it reduces histamine levels; helps women excrete estrogen; helps to detoxify the liver.
 
Methionine, administered as SAM, resulted in a significant decreases in serum bilirubin in patients with Gilbert's syndrome in a recent clinical study. SAM has been used with favorable results in a variety of other chronic liver diseases. TMG also converts to SAMe while being considerably less expensive.

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Tiger1976
I initially tried SAMe for 10 days at 400mg/day and then stopped since there was no visible improvement in my condition. A week later, I did some more research and found info on some web site that sold SAMe that SAMe should only be taken on an empty stomach and it should also be supplemented with Vitamin B-Complex. I started taking SAMe again early in the morning with B complex supplement and it's only been 7-8 days and I can definitely see an improvement. There is definitely some (little but noticable) white in my eyes that has not been there over the last 25+ years since I was diagnosed with GS. Today was the first day I went 800mg.

Me:

I got Nature Made brand SAMe about a month ago, thanks to suggestions on this site. I've been taking it here and there along with other supplements but not felt much of a difference. That is, until yesterday.

I decided to try the supplements all on their own, and yesterday was the day for testing SAMe. I discovered that I had only been taking a half-dose (200mg). It's worded strangely, but it appears you need to take 400mg (2 tablets) at ONCE. Well, I finally did this, and there was a marked positive effect. My mood improved, my brain fog subsided, music sounded better, and I became more outgoing and felt better overall. It was similar to the effect of Dextromethorphan, I thought, only about 1/3 as strong.

I've only tried the full dose this once, but based on how I felt (and still feel this morning), I highly recommend it.

Here's what it says on the box:
Quote:
SAM-e (s-adenosylmethionine) is a naturally occurring compound found in all living organisms. In humans, SAM-e is distributed throughout the body and is involved in many biochemical processes. Since significant amounts of SAM-e are not available through diet alone, the body is primarily responsible for producing its own SAM-e. Scientists know that SAM-e declines as people age and that certain groups of people, including those with low mood and liver conditions, tend to have lower levels of SAM-e in their bodies. Over 100 clinical studies involving thousands of people have proven that SAM-e supplementation benefits a multitude of body functions including:

* Mood Support: Enhances mood by promoting a healthy balance of neurotransmitters, dopamine and serotonin, which are part of overall healthy brain cell functions.
* Joint Comfort: Promotes joint health by helping to maintain joint cartilage which naturally deteriorates with physical activity and age
* Liver Health: Helps support detoxification and overall healthy liver functions.

Interesting to note that while I noted a similarity in effect with dextromethorphan, it turns out this ALSO helps improve dopamine and serotonin levels. Toss in the help with detox and this becomes very beneficial.

I still take hits in energy/discomfort/fog after I eat, but not quite as bad, and it doesnt last as long.

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel

S-adenosylmethionine (SAM), an important physiological agent formed in the body by combining the essential amino acid methionine with adenosyl-triphosphate (ATP) has been shown to both activate several Phase II pathways (including glucuronidation) as well as promote bile flow and relieve cholestatis. {Pizzorno, 157} {Murray, 372}.

“Supplementation of 1 gram of SAM twice daily results in a significant decrease in serum bilirubin in patients with GS.” {Pizzorno, 157}
“Supplementation with SAM at a dosage of 400 mg three times daily has resulted in a significant decrease in serum bilirubin in patients with GS.” {Murray, 372}.

SAM presents no significant side effects though individuals with bipolar (manic) depression should not take SAM as it may provoke a manic phase. {Murray, 372}.

A deficiency of methionin, vitamin B12, or folic acid can result in decreased SAM synthesis {Murray, 365}, therefore it is important that individuals eat whole foods to ensure a full range of nutrients.

TMG (Trimethylglycine) / Betaine - Reduces Bilirubin, Estrogen, Increases Bile Transport, Enzyme Support, Mood

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=85.topic

squid
I recently read on a website that TMG (me: Tri Methyl Glycine) was good for gilberts syndrome, i did some more searching and found some interesting things.

TMG helps in the production of sam-e which has been mentioned on this board.

http://www.arrowheadhealthworks.com/TMG.htm

"Liver Disorders: As a part of liver-healing and protection formulas. Increases SAM levels in the liver, enables the liver to metabolize fat and protect against many challenges such as alcohol induced cirrhosis. TMG will also decrease BILIRUBIN, alkaline phosphotase, and several other liver enzymes related to a large variety of liver disorders. Significant liver benefits have been shown in 20 studies. Dose range: 500-1,500 mg. daily."
www.wizardofeyez.com/tmg.html

"Trimethylglycine (TMG) is an excellent source of methyl groups and is found in good quantities in broccoli and beets."

"Methylation increases production of S-adenosyl-methionine, or SAMe. "

"Research shows that decreased methylation is involved in many health conditions, including diseases of the cardiovascular system, brain and liver, as well as cancer"

"SAMe is very useful in liver disease and in osteoarthritis it has been shown to stimulate cartilage regeneration."

"When SAMe is spent, it loses a methyl group to become homocysteine. TMG recycles the homocysteine back into SAMe, so with enough TMG in the system, the same SAMe molecule can be used over and over"

http://www.digitalnaturopath.com/treat/T36297.html

"TMG is a versatile nutrient and provides an intermediary metabolite that can enable a person or animal to function at more optimum mental and physical levels"

and also there has been discussion of:
"Chronic fatigue syndrome: Greater mental alertness and energy, improves immune dysfunction."

TMG is also thought to increase liver enzyme function and increase muscle growth ( GS is meant to make you weak)

sounds like broccoli is the new GS wonder drug.

Matthew2002
I've been on it (TMG) for almost a month now and I feel more alive than ever! It slighty reduced the yellow tint to my eye which is hard to notice now. I have been on it for well over 2 1/2 weeks. I've been taking 3-4 500mg pills a day.

http://www.nutritiondome.com/nutritiondome1/jartmgtrimet.html

I am still taking TMG (500mg) 6 tablets a day. Still slight jaundice in the eyes but I feel good.

DaveH439
After reading about TMG I decided to try it. The only product I could get locally was called "Connect" produced by Natural Highs and contained TMG together with a number of other things like B6 & B12. After the first couple of days I felt less of the fatigue and brain fog and I noticed I got a much better restful sleep. It's early days but I have been encouraged by the very quick result I have got with this product

rhlhmhkh
I have tried St. John's wort, Seasilver, SAMe and have had NO relief until now. I have been on Tri Methyl Glycine for the last 2 weeks and feel better than I have felt is over a year. I sure hope I continue to feel this good. (later) I tried it for a few of months and unfortunately, I did not find that it helped. I was hoping it was the miracle I am searching for. The fatique I have is unbearable some days. While taking TMG, I felt better some days and thought it was working then I would get an incredible low even while taking it.

StevieRay2
I have been taking TMG for the past 3 weeks and I must admit that my eyes are less yellow. Certainly not what I would consider normal white, but definitely an improvement. I have been taking three 750 mg tablets daily - but I am thinking of upping the dosage to four tablets per day.

(later) I am taking TMG - 6 x 500 daily - but gave up on milk thistle long ago after I determined that it did nothing for me. TMG seems to have reduced the yellow color of my eyes - but I would suspect that my billirubin level remains higher than normal since my eyes are still slightly yellow. The TMG I have been taking also includes folic acid, and vitamins B6 and B12, and I have also been supplementing with vitamin C... For me, TMG has produced no physical effects other than somewhat reducing the yellow color of my eyes. I am hoping to experience continued improvement after several months of "liver cleansing" if that's what the TMG is doing.

martinlong1978
I've tried TMG... first the dose on the bottle...3x500 a day. Useless, but when I upped the dose to 6x500 a day - fantastic. You still have to watch what you drink etc, but it can hel you live a normal life.

dmy222
How long taking TMG before an effects were felt, i started taking but made me feel tired,

StatenBoy
I have tried sjw, and tmg, but I did not have any luck

Kotulc
I think that TMG works realy well. I'm taking it for 4 days and I must say, I fell much, much better.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=158.topic

squid
i have managed to impove my gilberts like symptoms 100%... One of the most effective things for improving my health i have found is Raw spinach. Since i started eating it i feel calmer happier and more alert.

Cooking removes around 80% of vitamins and minerals as well as digestive enzymes from food. This is why spinach beets broccoli for TMG.

"The Biochemistry of Homocysteine
There are three biochemical pathways used by the body to reduce homocysteine. In one pathway, TMG donates a methyl group which detoxifies homocysteine. In this reaction, TMG is turned into dimethylglycine (DMG) - yes, that familiar product sold as a supplement for its energizing effects. In the other routes, folic acid, B12 and B6 convert homocysteine into non-toxic substances."

Spinach contains B6 and folic acid. B12, as vegetarians will tell you, you can get from microorganism on the surface of green vegetables (such as spinach).

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=155.topic

SxSnipeR
Trimethylglycine = Betaine in the UK
Uk preparations - None with betain on its own
in combination = Quest Enzyme Digest with betaine HCL
and Digenzyme

The ingredients are as follow: Microcrystalline Cellulose, Betaine HCL, Amylase, Lipase, Bromelain, papain, Magnesium Stearate, Sillicon Dioxide, Peppermint Oil.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=104.topic

DaveH439
I have started taking a product containing TMG. Early days but the initial thoughts have been good. I have also noticed that since taking this product my reaction to the foods that normaly zap my energy has been very much improved and I seem to be able to tolerate them without the normal bad reaction.

NAC (N-Acetyl-Cysteine) & Glutathione - Enzyme Support, Anxiety

http://www.liverdoctor.com/Section3/15_livertonics.asp

Glutathione
Glutathione is a potent antioxidant that is produced in the healthy liver where it neutralizes oxygen molecules before they can damage cells. Glutathione is a component of the antioxidant enzyme glutathione-S-transferase, which is a widely acting liver-detoxifying enzyme. Indeed large amounts of glutathione are stored in the liver, where it detoxifies harmful compounds so they can then be excreted via the bile. Glutathione helps to reduce damage from cigarette smoke, alcohol, radiation, heavy metals, drugs and chemotherapy. Glutathione plays a vital role in preventing liver cancer. Glutathione levels decline with age, and this may accelerate the ageing process. It is not worth taking glutathione supplements, as they are expensive and usually poorly absorbed. It is far more effective to increase glutathione levels by giving the liver, the raw materials it needs to make its own glutathione, namely, the amino acids glycine, glutamine and cysteine.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=13.topic

jeelbear
The increasing glutathione with food products absolutely is remarkable for the symptoms though, especially anxiety. Try broccoli and walnuts too at least every other day and see if it doesn't help the racing heart/pulse rate. If I get that racing heart feeling I eat one half cup of broccoli and it disappears. It also gets rid of that bloated feeling.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=15.topic

Trinityonline
At the moment I take N-Acetyl-Cysteine(NAC) which produces a very strong antioxidant, Glutathione which is already in the liver, but if you suffer with an impaired liver it needs as much help as it can get!

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=140.topic

Trinityonline
I started taking NAC (N-Acetyl-Cysteine), which I noticed you havn't tried, you can get it from most health shops (if you live in the UK sellected Holland and Barret stores sell it). NAC is an amino acid that is a precursor to Glutathione, which is a strong antioxidant that is excellent for phase 2 detoxification of the liver, (Milk thistle being phase 1 detoxification). After a week of taking it (600mg), my urine was more yellow which I believe is my liver getting rid of the toxins instead of pumping it round the body, due to this my face hasn't gone yellow for a few weeks, and my eyes aren't as bad.
 
I forgot to add to my previous message, if NAC is taken, twice the amount of vitamin C needs to be taken also, so if 600mg NAC is taken 1200mg of vitamin C needs to be taken also. This is because NAC oxidises vitamin C so supplements are required!!

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=31.topic

TrinityOnline
(me: regarding acne) I never normally suffer, just the occasional one, but since taking mainly NAC (N-Acetyl-Cysteine), I've broken out!!

http://www.lef.org/protocols/prtcl-143a.shtml

Glutathione
If entry of noxious materials is not controlled, detoxification, a cleansing ritual, can no longer keep pace, and alternative measures to encourage detoxification should be employed. Many nutrients and therapies assist in detoxification but glutathione is particularly important since it contributes to both Phase I and Phase II detoxification mechanisms. According to Eric R. Braverman, M.D., glutathione lessens the toxicity of heavy metals, automobile exhaust, cigarette smoke, fungicides, herbicides, nitrates, solvents, plastics, detergents, insecticides, and drugs. Furthermore, repeated exposure to any of these toxins can deplete glutathione faster than it can be produced or absorbed. Vitamin C appears to be an excellent nutrient to increase glutathione stores by stimulating the rate of glutathione synthesis. Glutathione supplementation is also available for individuals not wishing to rely upon vitamin C for glutathione enhancement. Glutathione in 250-mg capsules, taken on an empty stomach 1 or 2 times daily, is the recommended dosage.

Amino2000 - Enzyme Support

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=52.topic

mariusz
natural amino acids eg. “Amino 2000”-Ultimate Nutrition Corporation ( you can buy it in stores with body building supplements). It gets what we need: glutamine, glycine, taurine, cysteine, methionine etc. It is wanderful to give you a lot of energy and a little lower bilirubin.

Vitamins

Vitamin C - Enzyme Support

http://www.liverdoctor.com/Section3/15_livertonics.asp

Vitamin C is the most powerful antioxidant vitamin for the liver and reduces toxic damage to the liver cells from chemical overload. It neutralizes free radicals generated during the phase 1 detoxification pathway in the liver. Toxic chemicals are far less dangerous if there is plenty of vitamin C in the liver. It helps the liver to regulate cholesterol levels and improves immunity.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=48.topic

parkin98
Also about a third of a soluble vitamin C tablet helps me if I feel especially tired, particularly if I have a Red Bull-style energy drink at the same time.

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel

Vitamin C functions to activate the glucuronidation pathway {Bland, 10} and should be supplemented on a regular basis. Exact ranges to be determined by a nutrition consultant.

Vitamin E - Antioxidant

http://www.liverdoctor.com/Section3/15_livertonics.asp

Natural vitamin E is biologically more active than synthetic vitamin E. Vitamin E is a powerful antioxidant that protects fats from damage. Since cell membranes are composed of fats, vitamin E is the best protector of cell membranes. It does this by preventing free radicals from oxidizing cell membranes, which prevents them from becoming rancid. Thus vitamin E can help to protect the membranes surrounding liver cells. Vitamin E is also needed in those with a "fatty liver", where there is an accumulation of unhealthy oxidized fats in the liver cells.

Vitamin B2 / Riboflavin - Nausea?

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=77.topic

azvessey
suffered from nausea for all of those 30 years until just recently when I grabbed an old bottle of Vit. B2 that had been sitting in the cupboard for two years. Instant cure!

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=102.topic

Azvessey
what does work for me is 50mg+ of riboflavin (Vit. B2) per day. This is normally adequately supplied by milk and cheese, among other foods, but if you suffer from IBS or malabsorption this may help.

Vitamin B Complex - Fatigue, Nausea, Stomach Cramps, Anxiety, Bloating, Carbohydrate Processing, Metabolism, Immune Enhancer

Be aware that Vitamin B Complex vitamins probably contain Vitamin B3 (Niacin), which raises bilirubin levels. A B-complex vitamin lacking B3 would be ideal. However, it's been said that Niacin has a reduced effect on bilirubin when taken with other B-vitamins.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=3.topic

TheWojak
I have found that taking 2 Vitamin B Complex Vitamins (Natural not synthetic ... I prefer Shaklee's) every 4 days keeps the cramping and nausea away. It also gives me more energy. I came across this by researching something that was given me while hospitalized ... Berocca.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=26.topic

macpgh
A 'B'complex vitamin tab will also aid in getting energized again, as this is depleted in stress conditions.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=59.topic

stmacrina
GS & severe PMS since I started mensturating at age 11... I've found the benefits B-vitamins for taking the edge off the anxiety and the water retention.

http://en.wikipedia.org/wiki/Vitamin_b

List of B vitamins
• Vitamin B1 (Thiamine)
• Vitamin B2, (Riboflavin)
• Vitamin B3, also Vitamin P or Vitamin PP (Niacin)
• Vitamin B5 (Pantothenic acid)
• Vitamin B6 (Pyridoxine and Pyridoxamine)
• Vitamin B7, also Vitamin H
• Vitamin B9, also Vitamin M and Vitamin B-c (Folic acid) - important for pregnancies
• Vitamin B12 (Cyanocobalamin)

The B vitamins often work together to deliver a number of health benefits to the body. B vitamins have been shown to:
• Bolster metabolism
• Maintain healthy skin and muscle tone
• Enhance immune and nervous system function
• Promote cell growth and division — including that of the red blood cells that help prevent anemia.
Together, they also help combat the symptoms and causes of stress, depression, and cardiovascular disease.
All B vitamins are water soluble, and are dispersed throughout the body and must be replenished daily with any excess excreted in the urine (which turns a bright yellow color).

Vitamin B comes from a number of natural sources, including potatoes, bananas, cereal, lentils, chili peppers, tempeh, liver, turkey, and tuna. Nutritional yeast (or Brewer's yeast) is an especially good source of Vitamin B.

http://home.howstuffworks.com/vitamin-b.htm

Both the B vitamins and vitamin C are also stored in the liver.

The B-complex vitamins are actually a group of eight vitamins, which include thiamine (B1), riboflavin (B2), niacin (B3), pyridoxine (B6), folic acid (B9), cyanocobalamin (B12), pantothenic acid and biotin. These vitamins are essential for:

• The breakdown of carbohydrates into glucose (this provides energy for the body)
• The breakdown of fats and proteins (which aids the normal functioning of the nervous system)

Thiamine (B1)

The B vitamin thiamine is essential for the metabolism of carbohydrates into the simple sugar glucose. The chemical process involves the combination of thiamine with pyruvic acid to form a coenzyme, a substance that, when combined with other substances, forms an enzyme. Enzymes are those all-important proteins that speed up chemical reactions in the body. Thiamine is also important for the proper functioning of the nervous system. In this instance, thiamine acts as a coenzyme in the production of the neurotransmitter (chemical messenger between nerve fibers) acetylcholine.

Thiamine deficiency is rare but often occurs in alcoholics, because alcohol interferes with the absorption of thiamine through the intestines. There are several health problems associated with a deficiency of thiamine. The first is beriberi, a disease that is characterized by anemia, paralysis, muscular atrophy and weakness, and spasms in the muscles of the legs. Other disorders caused by thiamine deficiency include Wernicke's encephelopathy, which causes lack of coordination, and Korsakoff's psychosis, which affects short-term memory. The mouth can also be affected by thiamine deficiency, increasing the sensitivity of the teeth, cheeks and gums, as well as "cracks" in the lips. Fortunately, these conditions can be reversed with the addition of the vitamin.

Note: This could be the connection to the carb intolerance seen pretty frequently with Gilbert's Syndrome. Also, anemia, weakness, short-term memory.

Riboflavin (B2)

Riboflavin is important in the breakdown of carbohydrates, fats and proteins, and, like thiamine, it acts as a coenzyme in the process. It is also significant in the maintenance of the skin and mucous membranes, the cornea of the eye and for nerve sheaths. Riboflavin also acts as a coenzyme for oxidation-reduction reactions throughout the body. Oxidation reduction reactions involve the addition of either oxygen or hydrogen to a substance. One important consequence of this process is when it acts to inhibit chemical reactions with oxygen or highly reactive free radicals. These oxidation reactions can cause damage to our cells. (See How Cells Work.)

A deficiency of riboflavin can cause skin disorders (seborrheic dermatitis) and inflammation of the soft tissue lining around the mouth and nose, anemia, and can cause the eyes to be light-sensitive. In the mouth, angular cheilosis can develop. This is a painful condition where lesions develop at the corners of your lips, and glossitis (inflammation of the tongue) can also occur.

Note: More carbohydrate links. Also seborrheic dermatitis (which I have), anemia, and light sensitivity.

Niacin (B3)

Niacin, also known as nicotinic acid and nicotinamide, is needed for the metabolism of food, the maintenance of healthy skin, nerves and the gastrointestinal tract. Niacin is also used in those all-important oxidation reduction reactions. A deficiency of niacin causes the disease, pellagra. In the past, this disease was often associated with the very poor and was also a major cause of mental illness. The symptoms of pellagra are sometimes referred to as the "three D's" -- diarrhea, dermatitis and dementia -- ultimately resulting in a fourth "D", death. The mouth is also affected by pellagra, which can cause the inside of the cheeks and tongue to become red and painful. Fortunately, high doses of niacin (150-300 mg.) can reverse the effects of this disease.

Pyridoxine (B6)

Pyridoxine, also known as pyridoxal phosphate and pyridoxamine, is needed (like some of the other B vitamins) for the breakdown of carbohydrates, proteins and fats (see How Fat Works.) Pyridoxine is also used in the production of red blood cells (see How Blood Works), as well as in the biochemical reactions involved in the metabolism of amino acids (the building blocks of protein). Due to the abundance of pyridoxine in many foods, a deficiency is rare except in alcoholics, where it is often present. A pyridoxine deficiency causes skin disorders (similar to symptoms brought on by riboflavin and niacin deficiencies), neuropathy (abnormal nervous system), confusion, poor coordination and insomnia. Oral signs of pyridoxine deficiency include inflammation of the edges of the lips, tongue and the rest of the mouth.

Cyanocobalamin (B12)

Vitamin B12 is necessary for processing carbohydrates, proteins and fats and to help make all of the blood cells in our bodies. Vitamin B12 is also required for maintenance of our nerve sheaths. Vitamin B12 acts as a coenzyme in the synthesis and repair of DNA.

Vitamin B12 cannot be absorbed or used by the body until it is combined with a mucoprotein made in the stomach and called intrinsic factor. Once the B12 becomes bound to the intrinsic factor, it is able to pass into the small intestine to be absorbed and used by the body. Vitamin B12 deficiency is sometimes seen in strict vegetarians who do not take vitamin supplements, and those who have an inability to absorb the vitamin (usually from a failure to produce intrinsic factor). Although enough B12 is stored in the liver to sustain a person for many years, a deficiency will cause a disorder known as pernicious anemia. Pernicious anemia causes weakness, numbness of the extremities, pallor, fever and other symptoms. Mouth irritation and brain damage are also common consequences of B12 deficiency. However, these very serious effects can be reversed by vitamin B12 shots. Shots are needed because the deficiency is often caused by an inability to absorb the vitamin when taken orally. As we age, our stomachs have an increasingly difficult time producing intrinsic factor. Many doctors recommend that people over 60 have their vitamin B12 levels checked, to see if a B12 shot is needed.

Folic acid (B9)

Folic acid, also known as folacin and pteroylglutamic acid, is one of the B-complex vitamins that interacts with vitamin B12 for the synthesis of DNA, which is important for all cells in the body. Folic acid, in combination with vitamin B12 and vitamin C (see also How Vitamin C Works), is necessary for the breakdown of proteins and the formation of hemoglobin, a compound in red blood cells that transports oxygen and carbon dioxide. Folic acid is also essential to virtually all biochemical reactions that use a one-carbon transfer and is produced by bacteria in the stomach and intestines.

A deficiency of folic acid causes anemia, poor growth, and irritation of the mouth -- all of which are similar to symtoms suffered by those with B12 deficiency. Folic acid is present in nearly all natural foods but can be damaged, or weakened, during cooking. Deficiencies are found mainly in alcoholics, the malnourished, the poor, the elderly and those who are unable to absorb food due to certain diseases (topical sprue, gluten enteropathy).

Pantothenic acid and biotin

Pantothenic acid is used in the breakdown of carbohydrates, lipids and some amino acids. It is also used for the synthesis of coenzyme A for biochemical reactions in the body. Biotin functions as a coenzyme in carboxylation reactions (-COOH), which are also useful in many of the body's functions. (Pantothenic acid, biotin and folic acid are often used in tandem by the body.) Bacteria in our intestines produce both pantothenic acid and biotin. There is no known disorder associated with pantothenic acid deficiency. The vitamin is found in abundance in meats, legumes and whole-grain cereals. Mega-doses of pantothenic acid can cause diarrhea.

A deficiency of biotin is rare but can cause a skin disorder called scaly dermatitis.

http://www.netfit.co.uk/vit3.htm

Pantothenic Acid (B5)
Has an enhancing effect upon the adrenal glands, and is often taken during stressful conditions. It is also necessary during metabolism of fats, carbohydrates and proteins. Helps form certain hormones and antibodies. 

Minerals

Zinc Salts - Zinc Gluconate, Zinc Acetate, Zinc Sulfate - Reduces Bilirubin

Supplemental Zinc Salts: Orazinc, Verazinc, Zinc 15, Zinc Gluconate, Zinc Sulfate, Zincate, Zinc Methacrylate, Zinc Acetate

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15699685&dopt=Abstract

The effect of zinc salts on serum bilirubin levels in hyperbilirubinemic rats.

RESULTS: Substantial bilirubin-binding activities of zinc salts were demonstrated in in vitro experiments. Treatment with oral zinc salts significantly decreased serum bilirubin levels in Gunn rats (166 +/- 53 versus 123 +/- 38 and 206 +/- 34 versus 131 +/- 31 micromol/L, P < 0.05 for zinc methacrylate and zinc sulfate, respectively). A similar effect of zinc methacrylate was also observed in hyperbilirubinemic Wistar rats (102 +/- 10 versus 14 +/- 4 micromol/L, P < 0.0001). In accord, biliary bilirubin secretion decreased significantly in these animals (45 +/- 11 versus 28 +/- 4 nmol/h 100g body weight, P < 0.02). In contrast to zinc sulfate, treatment with zinc methacrylate did not lead to the elevation of serum zinc levels.

SCIENCE: National Library of Medicine

Zinc sulfate inhibits the enterohepatic cycling of unconjugated bilirubin in subjects with Gilbert's syndrome.
 
We have previously observed that UCB binds to ZnSO4 in vitro, and suppressed the biliary bilirubin secretion in the hamster. The aim of this study was designed to investigate whether Zn salts might inhibit the enterohepatic cycling of UCB in subjects with Gilbert s syndrome. Fifteen patients with Gilbert s syndrome and 5 normal healthy volunteers were included in this study according to the following criteria: fasting hyperbilirubinemia, no hemolysis, and free of any medication. Patients were randomly assigned to receive acute or chronic treatment. Subjects treated in acute form and normal healthy volunteers were treated with 40 mg of ZnSO4 in a single dose, where as patients treated in chronic form received 100 mg ZnSO4 in a single dose daily for 7 days. The serum UCB levels (mg/dL) decreased from 2.64 +/- 1.04 to 2.02 +/- 0.87 (p < 0.001) and 1.8 +/- 0.36 to 1.48 +/- 0.32 (p < 0.005) in subjects treated in acute and chronic form respectively, but not in the control group. Whereas, the serum Zn levels (mg/dL) increased from 96.3 +/- 16.8 to 118.8 +/- 19. 5, (p < 0.01) and from 117.6 +/- 8.5 to 130.7 +/- 6.6 (p < 0.03) in subjects treated in acute an chronic form and also in subjects in the control group (98.0 +/- 7.3 to 128.0 +/- 21.9) p < 0.03. This study showed that acute and chronic oral administration of ZnSO4 decreased serum UCB levels significantly in subjects with Gilbert s syndrome. Most likely by the inhibition of the "normal" enterohepatic cycling of UCB.

In Short: Zinc sulfate binds to unconjugated bilirubin and therefore decreases the levels circulating.

Me:

I took this in the form of 50mg Zinc Sulfate Monohydrate, which it said was the equivalent of 220mg Zinc Sulfate Heptahydrate. Within an hour I felt an uncomfortable burning feeling in my heart area which is still there 12 hours later. There is also a slight increase in clarity and energy. But not enough to recommend this. Perhaps the dose was too high? Or the forumlation wrong? I did not like the heartburn feeling. I'll consult a physician about this.

A therapist at Walgreens told me that "Zinc sulfate 220 mg contains 50 mg of elemental zinc. The associated monohydrate or heptahydrate does does alter the strength of zinc sulfate, or elemental zinc. There is no difference in the side effects of zinc sulfate, zinc sulfate monohydrate, or zinc sulfate heptahydrate."

http://www.drugs.com/MTM/zinc_sulfate.html

Before taking zinc sulfate, talk to your doctor if you are taking
• a tetracycline antibiotic such as tetracycline (Sumycin, Achromycin V, and others), demeclocycline (Declomycin), doxycycline (Vibramycin, Monodox, Doxy, and others), minocycline (Minocin, Dynacin, and others), or oxytetracycline (Terramycin, and others); or
• a fluoroquinolone antibiotic such as ciprofloxacin (Cipro), ofloxacin (Floxin), enoxacin (Penetrex), norfloxacin (Noroxin), sparfloxacin (Zagam), levofloxacin (Levaquin), lomefloxacin (Maxaquin), moxifloxacin (Avelox), gatifloxacin (Tequin), trovafloxacin (Trovan), and others.

Zinc sulfate may decrease the absorption of the antibiotics listed above. You may not be able to take zinc sulfate, or you may require a dosage adjustment or special monitoring during treatment if you are taking any of the medicines listed above.

http://www.medicinenet.com/zinc_sulfate-oral/article.htm

USES: This medication is a mineral used to treat or prevent low levels of zinc.

OTHER USES: This medication may also be used to promote wound healing.

HOW TO USE: Take this medication by mouth as directed by your doctor or on the package. Take this medication 1 hour before or 2 hours after meals. May be taken with food if it upsets your stomach. Best to swallow whole. Do not crush or chew. Avoid milk, bran, grains, or cereals within 2 hours of taking this medicine. Use this medication regularly in order to get the most benefit from it. To help you remember, use it at the same time(s) each day.

SIDE EFFECTS: Nausea, stomach upset, heartburn may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.

PRECAUTIONS: This medication should not be used if you have certain medical conditions. Before using this medicine, consult your doctor or pharmacist if you have: low blood levels of copper.

SCIENCE: National Library of Medicine

Zinc sulfate inhibits the enterohepatic cycling of unconjugated bilirubin in subjects with Gilbert's syndrome.

We have shown in our in vitro studies that Zn sales at physiological pH and above adsorb UCB essentially completely from unsaturated BS micellar solutions. This indicates that there is a physico-chemical interaction between UCB and Zn salts. The interation probably is via the carboxyl groups of UCB, as occurs with other divalent cations such as Ca2+ leading to the formation of calcium bilirubinate [Ca(BH)2].

Zn is the least toxic of the trace metals.

Interestingly, Dashti et al observed in experimental liver cirrhosis produced by thioacetamide that zinc sulfate-treated animals showed a restoration of normal hepatic and plasma zinc and copper levels plasma. Similarly, plasma levels of aspartate animotransferase, alanine aminotransferase, gamma-glutamyl aminotransferase, and total bilirubin decreased significantly. Light microscopic studies showed that most of the hepatocytes appeared normal in zinc-treated as compared with untreated cirrhotic animals.

http://www.mayoclinic.com/health/drug-information/DR202622

When zinc combines with certain foods it may not be absorbed into your body and it will do you no good. If you are taking zinc, the following foods should be avoided or taken 2 hours after you take zinc:
• Bran
• Fiber-containing foods
• Phosphorus-containing foods such as milk or poultry
• Whole-grain breads and cereals

Do not take zinc supplements and copper, iron, or phosphorus supplements at the same time. It is best to space doses of these products 2 hours apart, to get the full benefit from each dietary supplement.

Although this use is not included in product labeling, zinc supplements are used in certain patients with the following medical condition:
• Wilson's disease (a disease of too much copper in the body)

Potassium - Palpitations, Anxiety, Muscle Twitching, Fatigue, Dizziness, Leg Pain

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=218.topic

mouscelia
Has anyone else had problems with either of these things? I recently found out that I have low potassium levels...which was causing palpitations, anxiety, a flare up of GS and muscle twitching. I am now taking 20 milli-equivalents of potassium chloride daily. I noticed it is helping my fatigue and spacey feelings. I also noticed on the homepage of this site where it says what to eat for GS, a lot of those foods are high in potassium. I wonder if that is a coincidence or if there is a connection.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

SumariMike
If you are experiencing dizziness either on a low-carb diet or in general, find out if your potassium is low. People with low potassium also report leg achiness/pain and sluggishness. A potassium supplement corrects this very quickly. If you are taking blood pressure medicine or are advised against it, don't take potassium supplements w/o checking w/your doc because some medications force potassium to stay in the body and you can cause trouble by having too much. Low carb diets cause an increase in urination the first week or two and you lose salts, including potassium quickly.

Chromium Picolinate - Carbohydrate Processing

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=26.topic

macpgh
I have chronic fatigue syndrome, and in some people there is an expression of depression with this condition.

For people with dietary problems, you should take a dose of chromium picolinate. It is usually sold as the proper dose in a single pill, something like 200micrograms. This form of the mineral helps with insulin utilization within the body, and is typically stripped out in the regular american diet. So if your a high carb person, this is for you. In the over all view of the human biologic system, the sugar is transformed into glycogen & stored in the muscles for instant energy upon exersion. If mysterious forces upset this mechanism, this mineral should help you get reset. Fatigue is more the component of exercersion of muscles past normal limits, malaise is the dreaded sickly feeling. They shouldn't go hand in hand together, and the liver is the organ that gets over taxed from all aspects of life & these 2 items are main factors other than pushing it with the ingestion of toxics other than alcohol.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=63.topic

SumariMike
I started taking these vitamins to supplement since low-carb diets are also low in nutrients: Multivitamin, Calcium-Magnesium, Potassium (you get light-headed when you are on low-carb diets because your potassium evacuates quickly), Chromium picolinate (helps mobilize fats/carbs).

Antioxidants

Natural Carotenoids - Antioxidant

http://www.liverdoctor.com/Section3/15_livertonics.asp

Natural Carotenoids
Carotenoids such as betacarotene are most commonly found in fruits and vegetables and are most significant for human health. It is important to take only natural sources of beta-carotene and other carotenoids. Beta-carotene gets converted in the body to vitamin A and yet has none of the toxic side effects of high doses of vitamin A. Large population studies have shown that low intakes of beta-carotene are associated with a higher incidence of cancer. Beta-carotene is a powerful protective antioxidant.

Recreational Drugs

Marijuana - Nausea

Marijuana is one of the best known cures for nausea. However, it is illegal in many places. If you have access to medical marijuana, it would probably help a great deal with nausea. The smoke from smoking it can cause problems with the linked UGT1A7 mutation. You can avoid this effect by properly preparing and ingesting it.

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=110.topic

lildvez
I smoke pot for the nausea and occasional headaches because that is really the only thing that helps me.

Herbs

Yin Chen / Capillary Wormwood / Artemisia Capillaris - Reduces Bilirubin

Yin Chen is the active herb in the Chinese tea Yin Zhi Huang which reduces bilirubin levels. Yin Chen is inexpensive and available in its pure form from some online Chinese Herbalists.

http://news.bbc.co.uk/2/hi/health/3363223.stm

Chinese tea 'may cure jaundice'
 
Scientists in the United States have found that Yin Zhi Huang (YZH) can stop the build-up of a type of bile that causes the condition.

Dr David Moore and colleagues at Baylor College of Medicine in Houston, Texas, found that the tea activates a key receptor in the liver.

This enables the liver to clear bilirubin - a waste product that is created from the break down of haemoglobin, a substance in red blood cells that carries oxygen around the body.

http://www.pubmedcentral.gov/articlerender.fcgi?artid=300765

A traditional herbal medicine enhances bilirubin clearance by activating the nuclear receptor CAR

Yin Zhi Huang, a decoction of Yin Chin (Artemisia capillaris) and three other herbs, is widely used in Asia to prevent and treat neonatal jaundice. We recently identified the constitutive androstane receptor (CAR, NR1I3) as a key regulator of bilirubin clearance in the liver. Here we show that treatment of WT and humanized CAR transgenic mice with Yin Zhi Huang for 3 days accelerates the clearance of intravenously infused bilirubin. This effect is absent in CAR knockout animals. Expression of bilirubin glucuronyl transferase and other components of the bilirubin metabolism pathway is induced by Yin Zhi Huang
 
Yin Zhi Huang contains extracts from four different plants: Artemisia capillaris, Gardenia jasminoides Ellis, Rheum officinale Baill, and Scutellaria baicalensis Georgi.
 
Bilirubin is highly hydrophobic, and chronic hyperbilirubinemia results in its deposition in the central nervous system, causing neurotoxicity and encephalopathy. Some evidence suggests that chronic jaundice may also suppress the immune system as well as other normal physiological functions (4, 5).
 
CAR coordinately regulates the bilirubin clearance pathway. In addition to its function as a xenobiotic receptor, CAR responds to elevated levels of bilirubin by increasing the hepatic clearance of this toxic endobiotic (24)… Yin Zhi Huang stimulation of bilirubin clearance is dependent on CAR. The primary role of CAR in bilirubin metabolism is consistent with earlier studies showing positive effects of phenobarbital on jaundice (37, 38).
 
Yin Chin alone is considered to be the major active herb in the Yin Zhi Huang mixture.
 
6,7-Dimethylesculetin activates both mouse and human CAR. These results indicate that Yin Chin contains an agent or agents that can activate both mouse and human CAR. Among a number of compounds present in Yin Chin are the coumarin 6,7-dimethylesculetin (scoparone) and 4′-hydroxyacetophenone (Figure 4a). 6,7-Dimethylesculetin is a major constituent, comprising up to 2% of Yin Chin by dry weight and has been associated with a number of potential biologic actions (40).

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=191.topic

SumariMike
http://www.mcmia.org/index.asp?Page=content&Lang=EN&doc_id=306

This article is one connected to something I found on PubMed Central where it is proven that a Chinese herbal tea can help stimulate bilirubin clearance from the system. I read the "easy to read" paper here:

http://www.pubmedcentral.gov/articlerender.fcgi?artid=300773

I'm going to go find some. It appears to significantly clear the bilirubin liver pathways, even more than phenobarbitol without all the side effects.

Although the articles don't mention GS specifically, they discuss the UGT1A transfer pathways, hyperbilirubinemia, and the common jaundice in infants as a result of poor bilirubin conjugation. All the other GS articles refer to these same areas.
 
Here's another good easy-to-read link about the effects of Yin Zhi Huang:

http://www.sciencenews.org/articles/20040228/food.asp

Here's the only place I can see that sells it, and sells it in "granule" form. I sent an e-mail to the person listed on the site:
www.lunan.com.cn

Here's an interesting historical description of Yin Zhi Huang, which MAY be what is called "Wormwood" in America:
http://www.botanical.com/botanical/mgmh/w/wormwo37.html#commed
It shows that Wormwood helps cure the yellowing of people. Wormwood is apparently related to Absinthe, so be careful.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=192.topic

Yates66
The article states thier confident Yin Chin will clear bili by itself. I have tried Yin Chen Hao or (artemisia capillaris) with little results. I bought the stuff in consentrated form and put it in to capsuls, maybe the leaf form works better after you boil it

Me:

This is a follow-up to the original post by piraterocker on Yin Zhi Huang tea, which has been shown to activate the UGT1A1 enzyme which leads to reduction of bilirubin in the blood serum. It appears to work the same way as phenobarbitol but without the bad side-effects. Here is the article:

http://www.pubmedcentral.gov/articlerender.fcgi?artid=300765

The article is a bit thick, but it basically says the tea contains four different plants: Artemisia capillaris, Gardenia jasminoides Ellis, Rheum officinale Baill, and Scutellaria baicalensis Georgi. The active ingredient in bilirubin clearance is called Yin Chin, and the active chemical in it is called 6,7-Dimethylesculetin.

This could be a big help to us all. Has anyone tried this tea or herb? I heard from someone that Yin Zhi Huang tea is hard or impossible to find

I'm doing more research. The main ingredient seems to be more commonly referred to as "Yin Chen". It's latin name appears to be Herba Artemisiae Scopariae.
 
I'm also seeing it as Yin Chen Hao, with the name Artemisia Capillaris. From this site: http://www.kalyx.com/store/proddetail.cfm/ItemID/286363.0/CategoryID/13000.0/SubCatID/2850.0/file.htm
 
Yin Chen Hao has been used in Chinese herbal medicine for over 2,000 years. Artemisia Capillaris herb is traditionally used as a tea, decoction and smoke. It is a sedative and healthful tea.
 
Softly aromatic, cool and lacy, native to northern China, Japan and Taiwan, yin chen hao is hardy in the coldet climes. Bitter and acrid, yin chen hao works on the liver, stomach, spleen and gall bladder to clear jaundice, fever and treat hepatitis. It is considered a premier hepatoprotective herb in traditional Chinese medicine.
 
Artemisia Capillaris, Capillary Wormwood, increases secretion of bile into the gastrointestinal tract thus aiding the liver in draining its waste products. This herb in combination with Gardenia Jasminoidis has been shown to increase the rate of liver cell regeneration.
 
Yin Chen Hao is contraindicated for pregnant women.
 
This site sells it in several non-mixed forms, which is probably best for discerning its effect. Pill form: http://www.kalyx.com/store/proddetail.cfm/ItemID/286348.0/CategoryID/1000.0/SubCatID/10.0/file.htm
 
Other pure sources:
http://maxnature.stores.yahoo.net/yinchorwo130.html
 
Other sites selling versions of Yin Chen mixed with other things:
 
http://www.fitnessinsanity.com/cleansesmart.html
http://www.global-nutrition-inc.com/rl-020.html
http://maxnature.stores.yahoo.net/yinchwulisan.html
http://maxnature.stores.yahoo.net/yinchenhaowan.html
http://maxnature.stores.yahoo.net/yinchwulisan1.html
http://maxnature.stores.yahoo.net/yinchhaotaco.html
http://www.nutritionsurplus.com/index.cfm/FuseAction/Shopping.ProductDetails/productid/20911.html
 
Has anyone tried any of these? I'm gonig to order one of the pure forms and report back when I've given it a try.

How it Works

http://www.pubmedcentral.gov/articlerender.fcgi?artid=517509

The constitutive androstane receptor (CAR, NR1I3) plays a key role in the transcriptional activation of genes that encode xenobiotic/steroid and drug metabolizing enzymes. The expression of CAR mRNA throughout the circadian rhythm is reported for the first time in phase with the clock gene Bmal1 and in antiphase with the clock-controlled gene Rev-erbα mRNAs, with a peak at Zeitgeber time (ZT) 20 and a trough at ZT8, and a peak/trough ratio of 2.0. The diurnal difference in CAR mRNA expression might underlie the 1.7-fold difference in the magnitude of the PB-dependent induction of CYP2B1/2 mRNA.

The superfamily of nuclear hormone receptor comprises a group of transcription factors that play significant roles in response to a number of biological regulators. In addition to the pregnane X receptor (PXR, NR1I2), the constitutive androstane receptor [1] (CAR, NR1I3) plays a role in the transcriptional activation of genes that encode xenobiotic/steroid and drug metabolizing enzymes, such as cytochrome P450 (CYP) 2Bs, 2C19, 3As, multidrug resistance-associated protein 2 (MRP2), UDP-glucuronosyltransferase (UGT1A1), and 5-aminolevlinic acid synthase 1 (ALAS1) [2-8].

Milk Thistle / Silymarin / Silibinin - Abdominal Pain, Fatigue, Digestive Problems

Milk Thistle seems to help some people and make things worse in some people. There is another section on its negative effects down below. Give it a try and see if it works for you. Milk Thistle is also known as St. Mary's Thistle. The latin name is Silybum Marianum, and in Spanish it's Cardo Mari.

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anapep
Milk Thistle (Silybum Marianum) also goes by the name of St Mary's Thistle as the health food store told me.

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DaveH439
I found the Milk Thistle took about two months to really give me any major benefit. I almost stopped at the first month but I was pleased I carried on. I got indigestion at first but that passed.

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oni2230
I started taking milk thistle a couple of weeks ago.. I had a stitch of pain around my last rib and went through several blood tests to find i had gilberts. Not only has the milk thistle boosted my energy lvl, but the pain in my ribs is now almost completely gone.. also my bowel movements have turned much more regular and satisfactory (sorry if that is too much info).

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SumariMike
I asked a nutritionist about Milk thistle and what would be the best form to take it in. She urged me to use a tincture of milk thistle instead of pills or capsules.

A tincture is an alcohol mixture that absorbs a much higher quantity of milk thistle than just grinding it up and putting it in tablet or capsule form. I asked about the fact it was in alcohol and that I shouldn't use it for that, but she indicated that a whole bottle of milk thistle is less than a shot of a drink so that the recommended dose (one dropperful 3 times a day) would most likely not cause any problems except for those most sensitive to alcohol.

However, you will also be getting a more pure, better dose of milk thistle which aids in clearing the liver.

She also indicated it can take up to a month or two for the levels in your body to rise to the proper area where it is effective.

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williecanuck
Milk thistle. A weed grown all over. The extract is/has been used a liver detox for quite a while. HepC patients use it also. It helps during an attack (me anyhow), and is supposed to help keep the toxins out but, I still seem to get them.

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platinum women
As soon as I was diganosed with GS I started taking Milk Thistle, A mutli-vit and Vit C, and my levels have been normal ever since. They have been normal for months now, and intially we're 10-fold higher than normal...Take it...It really works... Milk thistle is the mother liver herb. It is the most potent liver protecting herb, prevents free radical damage by acting as an anti-oxidant, and helps to re-build new liver cells. It also prevents the formation of the bad leukotrienes, and also protects the kidneys. This herb detoxifies the liver and protects it from damaging toxins.

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AKJoy
I take milk thistle with my other multi-vitamins and DO notice a difference. I'm not real consistant with it, but when I get the abdominal aches, it relieves them within the hour.

Me: My first reaction to it was that it didnt help. I tried it off and on for a while, along with other things like Taurine, Cystein, and Methionine.

But as I've been taking them separately and watching closesly, it appears Milk Thistle is able to relieve the tight, swollen liver feeling I get which comes along with a lot of the other symptoms. It's a slight effect, but a positive one.

It was the only thing that helped yesterday.

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timtrue1999
I have been taking Milk Thistle for about a month now. I have seen some pretty dramatic improvement in my general condition.

WhosGilbert
Milk Thistle can be taken for long periods of time with safety, unless you are/ want to be pregnant (probably not if you're male?!) or are HIV positive. As a general rule of thumb, it is a good idea to take a break between these periods, that goes for any supplements in general. I would recommend taking it for three months at a time (to let it work properly) and then one month off.....this can be repeated indefinitely, my practitioner contacts tell me. What is so interesting, is that this herb should only work in phase 1 detoxing, and GS sufferers have most trouble with phase 2 detoxing...and yet there's obvious relief from the testimonials I've read!

I also know that Milk Thistle helps the liver clear the blood stream of candida spores, alcohol, helps with gall bladder sensitivites, and actually regenerates the liver cells.Also, it helps with digestive problems.

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mariusz
I tried milk thistle and dandelion root – helps only for my abdominal pain

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Shaun
I bought some Milk Thistle extract the other day (in capsules), and took just one. This immediately made me feel better, and cleared my head quite a lot - the downside was I went from pale to bright yellow!

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SDRCAN
Since I have been taking Silymarin and protein supplements, my IBS symptoms have disappeared completely... This has happened in the past with other treatments as well, but the symptoms have always returned... So far this current treatment has outlasted all of the rest. The protein supplement has glutamine by the way, which i believe is very important for the small intestine. The one I am using now is CytoPro made of whey isolates. It is important to know that both have glutamine, a very important amino acid, particularly for the intestines. I was taking 30grams daily but am now only taking 15grams daily and eating more dietary protein like tuna fish.

150mg of Silymarin twice a day.
30g of protein powder every morning for breakfast (mixed with milk)

PERSONAL: Gilberts Web Forums

sahoward
After doing some research i found that Milk Thistle is a good remedy for this problem. After just taking one dose i felt like a new person. I wasnt tired, was able to focus better, actually became more outgoing , the nervousness went away, and i actually felt better after eating carbs and also my appetite improved. The only thing is that aftert taking Milk Thistle i feel so energized that i am having trouble sleeping at night.

St. John's Wort - Depression, SAD, Mood Enhancer, Reduces Bilirubin, Immune Support, Enzyme Support

PERSONAL: Gilberts Web Forums

hayesmoore
I TOOK SJW FOR ABOUT 8 WEEKS. I originally took it as a treatment for SAD. I used the liquid form that comes from Holland and Barrett 1ml, 3 times a day with meals. I noticed that I had no more yellow eyes and having now not used SJW for 2 months or so I still do not have yellow eyes.
 
So anyway, don't give up on the SJW. At the time that I took it, the weather (in the UK) was very sunny and bright. It could be that SJW works best for GS when it is sunny and not when it is miserable as it is lately. This is becasue SJW among other things is a photsensitiser, and its performance is could (to a small extent) be dependent on light levels.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=66.topic

hayesmoore
Im using St Johns Wort. As a student of neuropharmacology I know that it is generally used to treat depression esp SAD. Research of Dr Dan Oren at Harvard has shown that SAD can be caused by excessive bilirubin. With my GS I also suffer from SAD (Seasonal Affective Disorder). The idea behind it is basically that in the winter there is a lot less UV light to break down the bilirubin, which directly affects the brain to cause depression.

Anyway, so I decidsed to use St Johns Wort. It has many affects including serotonin reuptake inhibition, monoamine oxidase inhibition etc.

Furthermore, since I have been taking it I have seen a DRAMATIC DECREASE IN YELLOW EYES. I now do not have yellow eyes at all, no more fatigue and i feel great-and there are no nasty side effects, (although u will find that u r more sensitive to light).

The reasons behind it are two fold. One-SJW is a powerful inducer of liver enzymes, which dramatically decreases bilirubin, and two-it increases your sensitivity to light, which means more of the bilirubin will be broken down.

If you're interested then I am using the SJW from Holland and Barrett here in the UK. I find the little 30 ml bottles of liquidised SJW most effective and u can buy that for £4.50. I take 1ml of it twice a day and give it a few weeks, and you'll see an amazing difference.

Because SJW is a powerful antibacterial and antiviral agent it also boosts your immune system.

The only bad thing about it is that you will have to stop using it when taking prescribed drugs because it also induces thopse enzymes used to metabolise them... the effect of most drugs that are taken orally and intravenously and other ways will be reduced by the SJW.

Matthew2002
I've been taking it for 4 days now and still have the yellow eyes but willing to give it more time... I've been using the SJW for close to 2 weeks and notice very little fix to the yellow eyes.

StevieRay2
Unfortunately, I've had the same results as Matthew - 10 days taking the SJW and the yellow eyes are still yellow. Perhaps a very slight improvement. Maybe the key is to coordinate the SJW with the light therapy since the SJW seems to increase sensitivity to light.

Doug
so far the SJW has made a big difference, my billi seems to be way down taking it. I am also using Full Spectrum Lighting treatment. The SJW increases your photo-sensitivity, so your body is able to absorb the light better and break up the billi. I have been on the SJW for 3 days. I take a pill 3 times a day.

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Doug
Just wanted to let you know I am still doing the SJW and FSL (me: full-spectrum lighting) treatment, and I feel a lot better. I am even sick right now(flu), and my symptoms are only slightly increased. Basically I look and feel now like I did on a good day when I had no treatment. Whereas, I used to have terrible symptoms, including extreme jaundice... I went to a tanning bed, and noticed no improvement, so I figured its not the UV rays that are doing it. So then I started trying FSL and noticed an improvement.

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WhosGilbert
Firstly, beware that taking it can cause your skin to be more prone to sunburn.

Secondly, if you have depression/anxiety problems (as a lot of people with GS do), this herb can actually increase the symptoms in some people (this is despite the fact that it is sold as a natural treatment for "mild" depression!). A minority of people will experience numbness in the extremities, shaking/trembling, and a feeling of "rushing" or "flooding" thoughts. If you are being treated for depression, or think you have it, try taking the first dose while you are at home, and in the presence of someone else.

Thirdly, it's a herb not to be taken during pregnancy.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=71.topic

hayesmoore
From the replies it seems that some of u have had some success with SJW. However, it appears that some of you have not but have only tried it for a few days.

I TOOK SJW FOR ABOUT 8 WEEKS. I originally took it as a treatment for SAD. I used the liquid form that comes from Holland and Barrett 1ml, 3 times a day with meals. I noticed that I had no more yellow eyes and having now not used SJW for 2 months or so I still do not have yellow eyes.

Doug
Just wanted to let you all know. I ordered some of the liquid form SJW from an online retailer. I noticed I got results from the capsul form, but let me tell you, the liquid form was even better. I have been using it for less than a week, and my jaundice is almost all gone.

www.iherb.com/stjohns.html

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hayesmoore
Some of you have found this popular herb to be beneficial (presumably because of its induction of Uridine Diphosphate Glucoronosyltransfearase).

Green Tea - Enzyme Support

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=7821873&dopt=Abstract

Stimulation of rat hepatic UDP-glucuronosyl transferase activity following treatment with green tea.

Studies were conducted to investigate whether aqueous extracts of green tea, administered to rats at concentrations consumed by humans, could influence the phase II conjugation reactions in the liver, and so contribute to its established anticarcinogenic activity. Exposure of rats to green tea (2.5%, w/v), as the sole drinking fluid, for 4 wk did not influence sulfotransferase, epoxide hydrolase nor glutathione S-transferase activities. UDP glucuronosyl transferase activity, when determined using 2-aminophenol as the substrate, was increased by 100% following treatment with tea. Finally, green tea had no effect on the enzymes affording protection against reactive oxygen species, namely catalase, glutathione peroxidase and superoxide dismutase. It is postulated that the enhanced glucuronidation may contribute to the anticarcinogenic effect of green tea by facilitating the metabolism of chemical carcinogens into inactive, readily excretable products.

In Short: Glucuronidation was increased by 100% following treatment with Green Tea.

Turmeric - Enzyme Support

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=108.topic

Ward
I have tried Milk Thistle and SJW but with no noticeable result. I recently started taking 1 teaspoon of turmeric in a glass of warm milk each day and have had a marked improvement in the reduction of yellowness in my eyes which has been the main symptom of my GS, and was wondering if anyone else had tried this? ... I noticed the improvement to my eyes after about 3 days, it is now 3 weeks since I started and they are whiter than they have been for a long time, not perfect but almost.

"Turmeric has been shown to increase the glutathione and glucuronyl transferease enzymes important for detoxification", I also read that it had been used in India for jaundice.

I find that it generally works well, though if I am tired and run down (I've just had a cold) then the eyes return to their previous state, so a good nights sleep is still essential imho.

Dandelion Root - Fatigue

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=182.topic

FLIPPER
I was diagnosed with GS about 5 years ago. Im now 37. have been drinking dandelion tea, and have found that it makes me feel better and more alert.

Wheat Grass - Antioxidant

PERSONAL: Gilberts Web Forums

kdhsgf
I recommend all sufferes to try taking wheatgrass shots daily for 10 days... just to see if there symptoms subside somewhat... as this was the advise I was given... I currently stopped taking livatone plus as I don't need it anymore... don't take Royal Jelly either...

Wheatgrass is a powerful antioxidant, and has a blood cleansing effect... this is good for us... as it means the liver doesn't have to do the job...
 
Here is a good link to read... http://www.living-foods.com/articles/wheatgrassinformation.html

You may be a bit sceptical... but take it from me... this actually works... hell, I had the worst symptoms anyone could imagine... I am only letting you all know about this because I can tell you from my own experience that it worked a treat... the woman that advised me to take some suffered from CFS and it cured her... she also told me a story or a woman that had gangrene from diabetes... her doctors told her she was gonna lose a leg... so she was desperate for an answer... she stumbled upon this natural wonder drug and began to juice it and drink copious amounts of it daily... after habitually taking it... she went back to the doctors and to her suprise the gangrene had subsided... the doctor himself was amazed and asked here what she did... I doubt he would refer anyone to take some as they are trained to pimp out medicine...

Yes I was sceptical... but after 10 days I was 10 times better... You will feel like @#%$ for the first 3 days... because it will be doing its job... if you don't notice any changes... then discontinue using it simple as that... and if you are allergic to wheat... it doesn't matter as it won't affect you...

PERSONAL: Gilberts Web Forums

kdhsgf
Now, here is an interesting article I have read... Nope I am not saying that you should worry about the possibilities of getting this dreaded disease (of course our chances have increased some what 1/3)... This website is full of plenty of alternatives to our worst enemy cancer... which of course thrives from toxins... But since I am a great believer of wheatgrass and have tried it with successful results... here is what it can do for you:

http://www.cancertutor.com/Cancer/Wheatgrass.html
 
WhosGilbert
Apparently, it's pretty easy to grow it yourself. You do need to get hold of "sprouting wheat" at a health food store rather than ordinary wholewheat though. I've seen it grown in a cat litter tray (new one, of course! :-) though not sure how to start. The info should be available on the net, I'd say.

You just let it grow until it's about 15cm tall, and cut a bunch off with scissors. Throw it into a juicer (a press type which doesn't heat because it doesn't spin is ideal as you lose less enzymes...but they are expensive juicers) and there you have it!

It tastes quite sweet actually, not "grassy" as people expect ... and really is great for you. I don't have it all the time, but it does give me energy when I do. The first time I had it I felt very nauseous, but I learnt to drink plenty of water or juice with it as well, which stops that.

Liv52 - Liver Support

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Eugene du Plessis
I discovered Herbal tablets in India called LIV52 (Manufactured by the Hymalayan Drug Company) that costs 35 Rupees for 100 tablets (Less than US$1) which has changed my life. I can exercize, have a few drinks, eat too much or endulge in any of these sins without being suffering the normal GS consequences.

Rheannon
LIV52- Liv.52 restores the functional efficiency of the liver by protecting the hepatic parenchyma and promoting hepatocellular regeneration. The antiperoxidative activity of Liv.52 prevents the loss of functional integrity of the cell membrane, maintains cytochrome P-450, hastens the recovery period and ensures early restoration of hepatic functions in infective hepatitis. Liv.52 facilitates rapid elimination of acetaldehyde, the toxic intermediate metabolite of alcohol metabolism and ensures protection from alcohol-induced hepatic damage. Liv.52 diminishes the lipotropic activity in chronic alcoholism and prevents fatty infiltration of the liver. In pre-cirrhotic conditions, Liv.52 arrests the progress of the disease and prevents further liver damage. Also, used for Cirrhosis, Malnutrition, Hepatitis, Alcoholic liver disease.

As a daily health supplement, Liv.52 improves appetite, the digestion and assimilation processes and promotes weight gain.
Scientific Validation: Liv.52's ability to eliminate toxins has been well studied. In a study of process and the elimination of acetaldehyde, a toxin derived from alcohol (European Journal of Clinical Pharmacology, 1991, 40 : pp. 189-91), Liv.52 was shown to enhance the urinary secretion of acetaldehyde, suggesting that Liv.52 prevents the binding of acetaldehyde to cell proteins in the liver.

Some of the main ingredients:
Capers- Well documented hepatic stimulant and protector. Improves the functional efficiency of the liver.
Wild chicory- Powerful hepatic stimulant, increases bile secretion, acts on liver glycogen and promotes digestion.
Black nightshade- Has been shown to support a healthy liver, skin, kidneys and bladder. The most recent studies indicate that the hepatoprotective effect of Black Nightshade may be due to the suppression of the oxidative degradation of DNA
Arjuna- Has been the herb of choice in Ayurveda for cardiovascular health. Arjuna’s lipid regulating benefits have been linked to its ability to modulate the blood’s absorption of lipids
Negro Coffee - Hepatic tonic, also used to promote normal bowel movements
Yarrow - has been traditionally used for support of the digestive and urinary functions. Its constitutents have been extensively studied and found to be of value in regulating gastric and bile secretions
Tamarisk- A hepatic stimulant and digestive. It contains an alkaloid, Tamarixin, that has been linked to its effectiveness in supporting the liver function

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=33.topic

Trinityonline
I've been taking quite a high dose of Liv52 for just over 3 weeks now. After the second week I felt alot better, and now after three weeks, my eyes are really clear with no signs of yellowing.

I've been diagnosed with GS for about 8 years now, and have also been diagnosed with M.E. for 2 and a half.

I contacted someone on this web-site, who was very helpful, and who previously had suffered with the same conditions as myself, and had benefited greatly by taking Liv52. The symptoms of the two conditions are very similar, extreme fatigue, muscle and joint pains, lack of concentration, and a host of others.

Liv52 has been used for many years and been scientifically proven effective for many liver disorders including hepatitis and cirrhosis, and also for lowering high levels of jaundice.

I can now do more than I have done for years, in just a small space of time, and am hoping that it will improve even more in the months to come, as Liv52 is an ongoing treatment, but has no side effects for long term use.

http://www.herbalprovider.com/liver-care-liv-52-m.html?src=ggl&w=liv52

Ingredients: Capers, Chicory, Black Nightshade, Arjuna, Negro Coffee, Yarrow, Tamarisk

Capers (Latin name: Capparis spinosa)
Caper is a hepatic stimulant that have been used for improving the functional efficiency of the liver. Recent experimental studies also confirm its protective action on the histological architecture of the liver and the positive effects on liver glycogen and serum proteins.

Chicory (Latin name: Cichorium intybus)
Chicory is a powerful hepatic stimulant which increases bile secretion, promotes digestion and enhances the action of Capers. Experimental evidence has been obtained of its effect on liver glycogen and recent studies have shown the inhibition of free radical induced DNA damage.

Black Nightshade (Latin name: Solanum nigrum)
The Black Nightshade plant and its berries contain various alkaloids that have been isolated and shown to have a dilating effect on the pupil. The main use, however, is to support a healthy liver, skin, kidneys and bladder. The most recent studies indicate that the hepatoprotective effect of the crude extract of Black Nightshade may be due to the suppression of the oxidative degradation of DNA.

Arjuna (Latin name: Terminalia arjuna)
Arjuna is a heart tonic that has been used to support cardiovascular functions since ancient times when it was discovered to have cardio-protective benefits. Recent studies have investigated the mechanism of this activity and has shown a dose-dependent regulation of blood pressure and heart rate. There was also a slight increase in the HDL-to-total cholesterol ratio and an overall improvement in the cardiovascular profile.

Negro Coffee (Latin name: Cassia occidentalis)
Negro Coffee has been traditionally used to promote normal bowel movements. It is a cousin species of Senna, a known and stronger purgative. Despite its name (which comes from its occasional use as a coffee substitute), Negro Coffee is absolutely unrelated to coffee.

Yarrow (Latin name: Achillea millefolium)
Yarrow has been traditionally used for support of the digestive and urinary functions. Its constitutents have been extensively studied and found to be of value as an alterative, diuretic, and tonic for the venous system. Additionally, Yarrow has been known to have a healing and soothing effect on the mucous membranes. It has been shown effective in regulating gastric and bile secretions.

Tamarisk (Latin name: Tamarix gallica)
Tamarisk, sometimes referred to as Saltcedar, has been traditionally used as a tonic and diuretic. It contains an alkaloid, Tamarixin, that has been linked to its effectiveness in conditions associated with hepatic insufficiency. There are indications that Tamarisk is also helpful in increasing platelet counts.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=13.topic

suhiab
liv 52 doesnt seem to work

Grape Seed Extract - Jaundice, elevated bilirubin levels

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=192.topic

Yates66
I have found something that has really helped my yellow eyes (the only thing that really bothers me) grape seed extract. I found it in this great article
at www.knowledgeofhealth.com/pdfs/BFactor.pdf

I have tried alot of things including phenobarbitol with little results. This stuff seems to really be working. I got it at my health food store in town. The grape seed extract I got has calcium phoshate in it also, another substance in the article said to lower bilirubin.

Note: Calcium phosphate forms kidney stones, so if you have problems with that you might want to skip this one.

White Nettle Leaf Tea - fatigue, nausea, dizziness, jaundice

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=88.topic

Marianne
After one cup of an natural herbal tea named "white nettle leaf" I felt much much better. It's almost magical. I have been using it for five month's now. The difference is literally fantastic. A friend of mine with the Gilbert syndrome tried it and she said that it worked for her.

posology : you need one cup of boiling water. Add one or two table spoon of white nettle leaves and wait ten minutes. drain the water and drink it. Don't boil the water with the leaves in.

The latin name of that herb is "lamium album". It's very very cheap and efficient. All I know is that the symptom (fatigue, nausea, dizzinness, yellow face) are gone.

Chinese Bitters - jaundice

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=17.topic

MJ
I sent to Prime Health Products in Toronto, Canada for a bottle of their Chinese Bitters. I've been taking a teaspoon a day for a week and......BINGO! Believe me, the old eyes ain't looked this good in 20 years.

StevieRay
I am on Day 8 of the Chinese Bitters and so far I haven't noticed much difference in my eyes - they are still a bit yellow as they have been for the past 17 years.

(later) Day 21 of the Chinese Bitters. Very slight improvement to the eye color. Still a bit yellow. I hoped this would have better results. Yes, the stuff tastes like you're drinking low-end whiskey from an old gym sneaker.

Ginger - fatigue, runny nose

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=197.topic

Apoplexic
Have you tried drinking tea made with Ginger? Whenever I feel fatigued (most of the time) I make a cup of normal tea with about a level-teaspoon of grated freshly grated Ginger added. Sweeten to taste but don't use any milk try to drink it all while hot. I have to be honest, it is an aquired taste and tends to give you a healthy dose of ginger-burn at the back of your throat, but before you realise it your fatigue will dissipate, sinuses will clear and if you had a growly stomach it also would've benefitted.

Schizandra - liver support

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=79.topic

WhosGilbert
a herb called Schizandra Root is fantastic!

http://www.naturesalternatives.com/herbs/schizandra.html

Chinese Schizandra Berry (Schizandra chinensis)

Actions: Tonic, adaptogen, aphrodisiac, mild stimulant, deep immune activator, antioxidant.

Common Use: Schizandra fruits or berries contain various lignans, mainly schizandrins, these lignans have been found to prevent liver damage, stimulate liver repair, and stimulate normal liver functioning. These properties appear to be related to the various antioxidant abilities of the various schizandrins. Schizandra also helps in digestion, regulating gastric acid release. Other studies have shown that extracts of schizandra are stimulating to the central nervous system and are cholinergic. There have been numerous reports on schizandra's ability to quicken reflexes, increase work efficiency, control anger and combat neurasthenias (headaches, insomnia, dizziness, palpitations). Other reports have mentioned increased cognitive function and increased memory. A recent study concluded that schizandra may be a useful herb to reverse depression, particularly that due to adrenergic exhaustion. Recent research studies have indicated that schizandra has numerous biological activities, including: anti-bacterial, mild stimulant, liver protective, anti-depressant, antioxidant, adaptogen and cardiac tonic

Note: This is too many claims to be believable - no surprise as it's a commercial web site. Find another source.

Ban Lan Gen / Isatis / Jsatis tinctoria L. - liver support, liver cleansing, liver inflammation

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=15.topic

Byjingo
Acupuncture and chinese herbs, BTW, for me have been fantastic at alleviating symptoms. A Chinese herb, Ban Lan Gen, is great for viruses and is a liver 'dredger' so I use it regularly.

http://www.asiachi.com/banlangencho.html

Ban Lan Gen Instant Beverage (isatis) is recommended for fever and liver inflammation.

Herbal General - Sort

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=79.topic

weezie
i often get reoccuring headaches that last for days (whether or not it is related to gs i dont know) i have found that using aromatherapy oils peppermint, clarrysage and rosemary/lavender in the bath/an oil burner or just simply put a few drops on a tissue can help clear the fuzzyness and uplift your spirits a bit too!

http://www.selene.com/healthlink/gilbert.html

The herbal tea combination of slippery elm, burdock, Turkish rhubarb, and sheep sorrel may be a great help in cleansing the liver (3-6 months). With almost all these natural remedies, healing may be slow over a period of months or years. The key thing is to stick to it, get regular lab tests done for liver function and maintain a positive mental attitude. Supervision by a natural health care practitioner is strongly recommended to assess progress.

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel

Liver teas, suchas those that contain dandelion root, milk thistle, and other liver specific herbs should be consumed to support the liver and optimize function. Pool Ridge Herb’s Liv-Clean is an example of such a tea.

Diets

I'm noticing two strong trends in diet and symptoms. There are those that have trouble with fats. This is often a symptom of gallstones, which can be completely or partially made up of bilirubin, which we have an abundance of. The other is trouble with carbohydrates (like me). This shows itself as strong food coma and brain fog after eating carbs, and possibly has something to do with gastroparesis or candida. With this type, fats are often helpful, as they help remove bilirubin from the blood (I forget exactly how).

So my advice is to test yourself - if you have trouble with carbs, then diminish them and dont worry about fats. Also try some probiotics and yogurt in case of candida. If you have trouble with fats, see your doctor, and he may be able to find out if you have gall stones.

The Liver Cleansing Diet - liver support, liver cleansing, fatigue, bad breath

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

Follow “The Liver Cleansing Diet” by Dr Cabot or the twelve vital principles in "The Healthy liver and Bowel Book" by Dr Cabot Include often - wholegrains, legumes, nuts and seeds, fruits and vegetables, beetroot, artichoke, carrots, turmeric, lecithin. Indeed, 40 percent of the diet should consist of raw fruits and vegetables with an emphasis on green leafy vegetables.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=186.topic

Rocker8888
I went on the Liver Cleansing Diet - Book by Dr Sandra Cabot and am consistantly 90-95% better with my symptoms, which were severe fatique and bad breath.

I recommend getting the book, but if you can't afford it, here are the main points for the diet. Do as much as you can and it will most likely help - for sure won't hurt.
- No white bread, white flour, white pasta, sugar/deserts (have real whole wheat bread, whole wheat pasta, brown rice and cut back on straight sugar as much as possible)
- No dairy and very little poultry and red meat (I eat no poultry or red meat - I do have a good amount of eggs and fish - and tofu - with no problem)
- Nothing deep fried
- Nothing with trans-fats, like packaged snack foods. Only natural oils like oil, sesame oils etc. Minimize saturated fat but have plenty of unsaturated
- Have lots of fruits and vegetables (I bought a juicer and make carrot/apple juice which is supposed to be good for the liver)
- Take Livatone and a multi-vitamin
 
In about a month or month and a half I was greatly improved and got even better after that. The diet is not easy - especially when eating out.

When I eat in, it's generally:

Breakfast
Bowl of No sugar/low sugar musli (like cereal) bought in bulk at a health food supermarket with soy milk

Lunch
Hard boiled egg sandwiches (take out most/all of the yokes during your healing time) with hummous on ezekial (sprouted grain - very healthy) bread. Spinach salad with olive oil and vinegar / little salt for dressing.

Dinner
Brown rice and some sort of bean (lentil, chickpea, etc) or tofu stirfried with vegetables and soy sauce.

Snack:
Peanut butter and very small amount of jam (because the sugar in it) on ezekial bread.

To go out to eat I try and find places where I can get plain fish and vegetables, or get eggs and a baked potato, or a salad, although salad only doesn't fill me up because I can't have meat on it - maybe salad and ask for extra hard boiled eggs on it.

I cut out alcohol too, because I can't imagine that being ok in any way for the liver, and I was never a huge drinker anyway - but I would say at least cut back a lot if you drink.

Oh yeah and don't ever microwave anything. Buy a steamer for $45 - $70 at a chinese food market or online, where you can put a whole plate in it and heat the food on the stove that way - microwaves kill everything that's good in your food, and food warmed in the steamer tastes far better - you'll notice how sythetic microwave food tastes when you compare it.

My bilirubin was 2.5 and is now 2.0, which is now the lowest of the abnormal range.
 
80sfangirl
I did Dr Cabot's diet after being diagnosed over the summer. I also felt much better. After I completed the 8 weeks, I attempted to incorporate some normality to my diet. I am married with 2 kids and am the only one who would even try the food in the diet. Since then I have noticed several things, first -- foods that never really bothered me before now make me ill (esp. cheese) (my friend, a kinesiologist said that this is normal because my body got such a clean out that there was nothing in me to absorb the bad stuff), second--I do not feel nearly as good now as I did in the last 3 weeks of the diet.

Moral of this story: Dr Cabot's diet is very beneficial, but the cons are that it is difficult to stick to, a little boring, and it can be expensive and time-consuming (especially for me since I hate to cook and everything is made from scratch). Last, it may be possible for us to eat some foods that are not necessarily "liver-friendly", but it is a trial and error journey to discover which foods they are.

Anti-Candida Diet - Candida (and all the associated symptoms), hypoglycemia, fatigue, digestive problems, brain fog

http://p075.ezboard.com/fgilbertswebfrm2.showMessageRange?topicID=149.topic&start=21&stop=40

Hally m
I have found diet has given the best results to date. I hate to say this, but getting rid of all refined sugar really helps the blood sugars to stay more stable - which in turn helps with the fatigue… I also now have no bread and very little wheat (basically it's the candida diet) and load of raw salad foods (very well chewed) and brown rice. My digestion and IBS symptoms have improved noticeably and energy levels are better.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=86.topic

Pinawa
In my recent determination to lead a normal life I stumbled upon the Candida theory and diet - closely linked with Chronic Fatigue. I have been trying it and believe it or not my fatigue is lifting and the brain fog is almost gone. I also seem to be getting ill less! For the first time since I can remember I am actually waking up before noon on the week-ends! Perhaps there is something in it for GS sufferers, or perhaps it could be the cause of GS?

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=56.topic

WhosGIlbert
I found by going on an anti-candida diet (no sugar/starches/dairy for six weeks) combined with Milk Thistle really helped. Then, I started weekly vaccines for my inhalant allergies, which has greatly improved my overall health. As a basis, though, I pretty much stick to a really good diet (wholefoods, fairly heavy on protein, but balanced with lots of vegies and fruit, and light on the grains and starches) eaten in 5 or 6 small meals a day, lots of water, and good sleep too.

I've also stopped working so hard! I now work for myself at a desk rather than running around in retail for someone else, and the energy I save, I put into walking and yoga. I found one or two hours focused exercise a day is much better for keeping GS symptoms at bay than either constantly being on the go at work, or even resting. It really helps too with IBS, and chronic fatigue.

Specific Carbohydrate Diet - hypoglycemia, jaundice

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=15.topic

Azvessey
I actually go to extremes in avoiding high glycemic foods. Such a diet is currently known as the 'specific carbohydrate diet' of which there are many entries on the web. The richest form of "complex" carbohydrate that I eat as a whole food is Chinese cabbage which contains less than 1% sugars. I do rely heavily on low carb yogurt, vegetable juices eg. carrot/celery, and eggs/meat to provide a complete balance of micro/macro nutrients.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=60.topic

azvessey
I suffered from GS??? back pain all of my life until I gave the 'low glycemic' and 'specific carbohydrate diets' a go. Instant success with all of my GS symptoms including the elevated bilirubin.

Atkins Diet - fatigue, abdominal pain

PERSONAL: Gilberts Web Forums

Two sheds
I am 52, 5ft 9inches and at 185 pounds was a bit overweight but a couple of months ago I decided to get my weight down for Christmas and started the Atkins diet. At its basic, Atkins is – eat as much as you want of meat, fish, eggs, fat and hard cheeses and limit vegetables to a controlled amount of “leaf” vegetables - pretty much a NO carbohydrate diet. This is counter-intuitive but it worked for me and I lost 17lb in 9 weeks.

But that was not the big surprise. I found that within two weeks my stamina had increased substantially, I went from struggling to run three miles to running six miles in one go, I now come off the squash court feeling as though I have hardly played, I sweat less, need less effort and I recover a lot more quickly. This has happened so quickly that it can’t be just the weight loss. I suspect that it is alleviating some of the effect of Gilberts although I have no proof. I used to exercise despite how I felt, now I look forward to it.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=63.topic

SumariMike
I had tried the Atkins (low carb diet) once before with pretty good results, so I tried it again. In two weeks I lost 10 pounds and then I switched to a diet called "Protein Power" which helps you regulate your body fat vs lean muscle. It also is tastier than Atkins which is very meat-oriented. Protein Power lets you have veggies and some bread.

I started taking these vitamins to supplement since low-carb diets are also low in nutrients: Multivitamin, Calcium-Magnesium, Potassium (you get light-headed when you are on low-carb diets because your potassium evacuates quickly), Chromium picolinate (helps mobilize fats/carbs).

The bottom line is I started feeling fantastic. My energy level skyrocketed after a couple of weeks (no caffeine, mind you!). I am doing yoga which is great for relaxation and exercise (it's very strenuous!). My weight dropped, my belt line dropped dramatically. I feel just great!!

I went to the doctor again last week for a blood test. Guess what!? My cholesterol dropped to 170, my triglycerides dropped to an amazingly low 98, and most interesting, my bilirubin dropped as well: 1.5 -- right on the border of normal and high. There was no bilirubin in my urine (which is very unusual for a GS person). This is after 12 hours of fasting. Normally it would be 1.9 or higher. It's hard to believe that all these numbers dropped especially because I was eating lots of red meat, some of it not lean.

I do not feel the effects of GS most days, and when I "cheat" it takes longer for the effects to come in and they go away faster.

I am using fiber to help the meat go through my system. Meat on its own can keep you very blocked up.

I recommend "Flax" fiber -- it's the only fiber source that I know of that contains both elements that balance your cholesterol. Other fibers (Metamucil, etc) don't necessarilly have cholosterol-reducing abilities.

PERSONAL: Gilberts Web Forums

BernieStrand
Currently, I have started Atkins' nutritional program. While several things, including Atkins' own disclaimer against anyone with liver dysfunction from trying the plan without physician OK, have discouraged my trying it, I have found positive benefits. While I am not losing the GOBS of weight that others report during induction, I have had modest loss, have less abdominal pain, reduced appetite, and different energy. I say "different" energy because rather than the spurts and crashes I experienced before, my level of energy seems to have evened out.

Low-Carb Diet - digestive problems

PERSONAL: Gilberts Web Forums

clogsdon
Diet-wise, while I don't know if I'd recommend the Atkin's diet, I would stay away from the complex carbohydrates. I eat a diet of largely unprocessed foods - a lot of fruits, vegetables, meat, whole grains, etc. I find that I can occasionally eat pasta or pizza, but I really have to watch my intake or my digestive system goes completely haywire. Some people with GS report difficulties with fats, although I usually seem to do fine with them.

Low-Glycemic Diet - hypoglycemia, back pain, bilirubin

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=158.topic

squid
If you feel tired, have brain fog, anxiety you may need to normalise blood sugar levels by following a low GI (Glycemic Index www.glycemicindex.com) diet. Eat low gi foods like Oats (porridge), pasta (if you can handle gluten), sweet potatoes. Avoid foods which have a high gi such as white bread, potatoes (mashed and chipped are the worst), sugars, refined corn based foods, refined white rice. Infact try and avoid all processed foods especially refined carbohydrates.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=60.topic

azvessey
I suffered from GS??? back pain all of my life until I gave the 'low glycemic' and 'specific carbohydrate diets' a go. Instant success with all of my GS symptoms including the elevated bilirubin.

Food-Combining Diet - digestive problems

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=3.topic

azvessey
I avoid most all of the unpleasant IBS symptoms by using the 'food combining' diet plan, ie. consuming different types of food, and fluids, at different meal times rather than combining the three major food groups (or water) at each meal. My fatigue problem however only partially improves with this diet.

Supplements for Carb Diets: Glucose Tablets

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=104.topic

DaveH439
I had noticed a similar reaction to refined carbohydrates. I have tried the glucose tablets as you reminded me that they worked for me years ago so your suggestion was very good.

Supplements for Low-Carb Diets: Calcium-Magnesium, Potassium, Chromium Picolinate

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=63.topic

SumariMike
I started taking these vitamins to supplement since low-carb diets are also low in nutrients: Multivitamin, Calcium-Magnesium, Potassium (you get light-headed when you are on low-carb diets because your potassium evacuates quickly), Chromium picolinate (helps mobilize fats/carbs).

Other Diet Advice

http://www.gilbertssyndrome.org.uk/What%20is%20Gilbert's%20Syndrome.html

Most important in keeping your liver functioning as well as possible is maintaining stable blood sugar levels.  This is because the enzyme we don’t have much of uses sugar to help get rid of the toxins it is supposed to deal with.  We can also fool the liver into making more of the enzyme by eating certain foods and diet plays an important part in managing GS.

http://www.gilbertssyndrome.org.uk/Gilbert's%20Syndrome%20All%20About%20Bilirubin.html

The enzyme also uses blood sugar to help in processing bilirubin, which is one reason why missing meals can affect you.  It’s best to ensure you have regular small meals, and cut down on unrefined sugar and carbohydrates like white bread and pasta, so that the amount of enzyme you have can always have a stable supply of blood sugar to do its job.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=186.topic

Jenster
Just want to confirm, changing diet helps. it's pretty much about experimenting with different foods, what works and not. general advice:
try gluten free (wheat free is a must) AND dairy free and cut down on sugar and all damaged fats (e.g. crisps, fish and chpis etc, anything deep fried). drink lots of water (avoid tap water if possible), about 1.5-2 litres/day. a lot of vegetables, organic if you can afford, the less chemicals and additives the toxins for your liver to process. keep the diet as natural as possible. cut down on coffee and tea. no alcohol. DO this for about 4-6 weeks, and you will feel the difference.Then you can start to experiment on your own with what foods work for you.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

July15
What finally pulled me out of the nausea was to eat small meals and never go for more than 2-3 hours without eating. It took awhile, but the nausea pretty much lifted and I have had hardly any trouble with it other than an occasional bout. What I discovered is that I am hypoglycemic and that is what was causing this. I am sure that the GS is causing the hypoglycemia. If you are not doing so already, I would recommend examining your eating habits and see if some changes can help. Don't expect instant results overnight, either. It took me a few months to start noticing a difference.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

azvessey
I have had this nausea thing constantly for 20 years. For me the only thing that stops the nausea is total avoidance of simple sugars. I have to go to extremes to avoid even natural sources of simple sugar like carrot, beets, and pumpkin as well as most fruits although I now find that by following a well known diet 'food combining' I can plan my meals to include small amounts of these simple sugars

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

WhosGilbert
I find lack of sleep brings on the nausea 10-fold!
Also: chocolate, and fried foods.
I find there's two kinds of nausea.....the niggling, hard to pin down kind (with me, lack of sleep), and the immediate, indigestion kind from the food.
For the first, I find nothing but sleep works! (funny, that!!) and for the second, I love using ginger in tea or tablets. Also walking seems to help.

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SumariMike
Gastric reflux is big in our society and comes from (among other things) indigestion from carbohydrates. I was being treated for milf reflux before I switched to a low carb diet. Stress is my trigger for reflux. However, upon starting the low-carb diet, within a week every bit of discomfort and reflux vanished completely. Definitely diet related.

I've posted before but the low carb diet caused my billirubin to be in a normal level WHILE FASTING for the first time since being diagnosed with GS. The mix of vitamins, minerals, and balance of fat/protein/carbs really seems to help the system. Lots of water keeps toxins out. I feel 120% better, with lots of energy, I've lost weight and feel much better.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=176.topic

SumariMike
I am not fully utilizing the diet you describe, but I am closer to it than I have been. I opt for fresh fruits, vegetables, leaner meats, and whole grains and I've had great results.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=3.topic

NULLcontext
I find both the nausea in the morning, and the anxiety goes away with just eating.

Foods

Water - detoxification

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

Drink eight glasses of water daily. Distilled water with lemon is also excellent.

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel

Be sure to drink at least 48 oz. of pure water daily. {Murray and Pizzorno, 120).

Caffeine - fatigue, depression, tiredness, bilirubin

Drinking caffeine via Red Bull fills me with energy and raises my mood. This effect can last all day. I only drink it 2-3 times a week. Red Bull has a bunch of other ingredient that are useful to the liver, however, so it might not be caffeine alone that's responsible for this.

http://en.wikipedia.org/wiki/Caffeine

Caffeine is a central nervous system (CNS) stimulant, having the effect of warding off drowsiness and restoring alertness. Beverages containing caffeine — such as coffee, tea, soda & energy drinks — enjoy popularity great enough to make caffeine the world's most popular, & legal psychoactive drug.

Caffeine content in coffee varies widely depending on the variety of coffee bean and the method of preparation used, but in general one serving of coffee ranges from about 40 mg for a single shot (30mL) of arabica variety espresso to about 100 mg for strong drip coffee... Soft drinks typically contain about 10 mg to 50 mg of caffeine per serving. By contrast, energy drinks such as Red Bull contain as much as 80 mg of caffeine per serving.

http://www.clinchem.org/cgi/content/abstract/33/4/597

By means of gel-filtration of bilirubin/albumin mixtures, it is shown that unconjugated bilirubin remains completely linked to albumin (both human and bovine) in tetraborate buffer (pH 9.3), protein-free bilirubin appearing only when the bilirubin/albumin molar ratio exceeds two. On the other hand, bilirubin is completely set free from its protein link in the caffeine reagent. Additional chromatographic and spectrophotometric evidence is reported indicating the formation of a low-affinity complex between bilirubin and caffeine. These data explain why the spectrophotometric properties of bilirubin/albumin mixtures are matrix-dependent if measured in the tetraborate buffer but are no longer so when measured in the caffeine reagent.

In Short: Caffeine separates unconjugated bilirubin from albumin. The bilirubin then weakly binds to the caffeine. This leads to lower (from what I've read elsewere) measurements of bilirubin. But I wonder if this doesnt also free the albumin to be a carrier for more thyroid hormones, which could increase energy in that way. Note that this is just a theory of mine.

http://www.webmd.com/hw/liver_disease/hw3474.asp

Factors that can interfere with this (bilirubin) test and the accuracy of its results (except in newborns) include:
• Caffeine, which can lower bilirubin levels.

Fats - bilirubin

Fats seem to be helpful EXCEPT for those experiencing the symptoms of gallstones. For those, it's better to have less fats in the diet.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=193.topic

WhosGilbert
* Apparently, lipids (fats/oils) help to clear bilirubin, probably because it is fat-soluble rather than water-soluble (that's why it settles in the body's fatty layers of tissue such as under the skin), and therefore unless you have gallbladder problems, have some (good) oils in the diet.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=149.topic

WhosGIlbert
I have just recently found on a medical report that oily food can help LOWER bilirubin......bilirubin is fat soluble and therefore harder for the liver to conjugate than water soluble toxins, for example. Bile is needed to do this best, being essentially an "oil in water" emulsion, rather than simple water "flushing", although it helps. This fat-soluble property is why bilirubin tends to linger in fatty areas of the body...e.g. under the skin, the membranes covering the eyeballs, etc, i.e. jaundice.

In using fats to lower bilirubin, the trick would seem in chosing fats that are also liver-friendly, maybe salmon, tuna, olive oil, and perhaps lower fat dairy products. I think trying lecithin as a supplement could help too, as its role is to bind fats to water.....exactly what we need.

Broccoli Sprouts - UGT enzyme inducer

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=72.topic

hayesmoore
This is very likely to be because broccoli contains a chemical called sulphoraphane. This is a powerful Uridine Diphosphate Glucoronosyltranferase (the deficient enzyme in GS) inducer. This chemical is found in many fruits and veg including red grapes.

However, Sulphoraphane is roughly 50 yes fifty times more concentrated in sprouts-not brussel sprouts but sprout of young premature frtuits and veg. It is most highly concentrated in Broccoli sprouts.

there is much research going on into broccoli sprouts (mainly john hopkins uni) and this chemical as a possible cancer preventative as the UDPGT enzyme is an important one in breaking down carcinogenic chemicals

Limonene-Rich Foods - Citrus Peel, Dill Weed Oil, Caraway Oil - UGT enzyme inducer

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel

The activation of UDPGT is increased by foods rich in a monoterpene called limonene, these foods include citrus peel, dill weed oil and caraway oil. These foods have been shown to improve glucuronidation and also protect us from chemical carcinogens. {Murray and Pizzorno, 119}.

Sulfur-Rich Foods - Egg Yolks, Red Peppers, Garlic, Onions, Broccoli, Brussel Sprouts - UGT enzyme support

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Gilbert's Syndrome by Marina Eckel

Sulfur rich also help the glucuronidation pathway to work correctly: egg yolks, red peppers, garlic, onions, broccoli, brussel sprouts. {Murray and Pizzorno, 120}.

D-Glucarate-Rich Foods - Apples, Grapefruit, Broccoli, Brussel Sprouts - UGT enzyme support

http://www.lef.org/protocols/prtcl-143a.shtml

A phytoextract, D-glucarate, has been shown to support the glucuronidation pathway by inhibiting the activity of beta-glucuronidase. D-glucarate may be obtained naturally by emphasizing apples, grapefruit, broccoli, and brussels sprouts

Protein Drinks - adrenal support?

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DaveH439
The subject matter is related to burn out of the Adrenal Gland and great emphasis is put upon diet. Protein power drinks are recommended.

secraser
I also have had good experience with protein powders which are available at Health food shops in the UK... I tried protein powder and reduced fatty carbohydrates and it has given a big improvement in the way I feel. Oily fish gets similar results, tinned tuna, sardines or mackerel.

Red Bull - fatigue, liver support, memory, concentration

Me:

Red Bull has a consistently good effect on my energy levels and mood. It's among the most consistent and positive influences on my health and mood. The ingredients are interesting - it's almost a liver tonic. Take a look:

carbonated water
sucrose (sugar)
glucose (sugar)
sodium citrate (flavor)

taurine
PowerHorse.com: Taurine acts as a metabolic transmitter and additionally, taurine has a detoxifying effect and strengthens cardiac contractility.

glucuronolactone
Wikipedia.com: Glucuronolactone has been shown to improve memory retention and concentration and act as an antidepressant and stimulant.
PowerHorse.com: It is a substance found in the body which accelerates the elimination of both endogenic and exogenic noxal (harmful substances). So it too has a detoxifying effect.

caffeine
Wikipedia: Caffeine is a central nervous system (CNS) stimulant, having the effect of warding off drowsiness and restoring alertness. (duh)

inositol
Wikipedia: Some preliminary results of studies on inositol supplements show promising results for people suffering from problems such as bulimia, panic disorder and bipolar depression. Inositol has been found in double-blind studies to be an effective treatment for obsessive-compulsive disorder (OCD). It is equal in effectiveness to SSRIs and is virtually free from side effects.
PowerHorse.com: It is a kind of sugar alcohol and an important factor for growth. It is also in the body to contact against the fatty degeneration of the liver.

niacinamide (Vitamin B3)
calcium-pantothenate (Vitamin B5)
pyridoxine HCI (Vitamin B6)
Vitamin B12
Wikipedia.org: The B vitamins often work together to bolster metabolism, maintain healthy skin and muscle tone, enhance immune and nervous system function, and promote cell growth and division — including that of the red blood cells that help prevent anemia.
Together, they also help combat the symptoms and causes of stress, depression, and cardiovascular disease.
RedBull.com: B-group vitamins play an important role in energy metabolism, such as the build-up and break-down of carbohydrates, fat, and proteins.
Note: I remember reading somewhere that people with GS can have lowered levels of B vitamins. Vitamin B3 has been shown to raise bilirubin levels, but I've also heard that when taken with other B vitamins this effect is reduced.

Artificial Flavors
Colors

Bolthouse Farms Green Goodness - detoxification, liver support, UGT enzyme support

Me:

A few days ago I was in the mood for a smoothie/fruity healthy drink and I grabbed this new item from Bolthouse Farms called "Green Goodness". These are sold in many of the grovery stores around Atlanta, and it's in a refrigerated section by the produce.

When I drink it, I feel strange - slightly drunk, slightly better, and slightly more fogged. It's an odd combination. The ingredients contain MANY things that are good for folks with GS. Here's the list:

Apple Juice
Pineapple Juice
Mango Puree
Banana Puree
Kiwi Juice
Natural Flavor (???)
Spirulina - antiviral, helps remove toxic metals
Open Cell Chlorella - helps remove toxic metals
Vitamin C - many claim this helps GS
Lime Juice
Zinc Sulfate - reduces bilirubin levels
Broccoli - increases UGT enzyme activity
Green Tea - increases UGT enzyme activity
Spinach - B12/B6 vitamin source
Barley Grass
Wheat Grass - one user claims helps a lot
Blue Green Algae
Echinacea Purpurea Extract
Odorless Garlic - good for GS
Tamarind Puree
Dragon Fruit Juice
Lemon Bioflavonoids
Jerusalem Artichoke
Nova Scotia Dulce

Food General - Sort

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maplekid
Recommendations
Eat only raw vegetables and fruits for one week. Then eat a diet consisting of 75% raw food for a month. Drink the following juices: lemon juice and water, beet an beet greens, and dandelion or black radish extract. All are good for rebuilding and cleansing the liver. Never consume raw or undercooked fish, meat or poultry. All raw fish pose a risk of infection from bacteria, parasites and viruses. Do not consume any alcohol. Alcohol places a great strain on the liver, which can aggravate the condition further.
 
Note: Interesting – many of these are treatments for candida

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DianaC
Maxalon is very good for the nausea if its really extreme, but I find sipping mineral water (sparkly or still) with some slices of lemon or lime, or in summer sprigs of fresh mint, can be very helpful.

http://www.selene.com/healthlink/gilbert.html

Great benefits may be derived from following a raw vegetable and fruit diet for several weeks and a plant based diet on a long term basis (3 to 6 months). Therapeutic juices include radish and pineapple, black cherry concentrate mixed with liquid chlorophyll and a combination of carrot, beet, celery, green pepper, spinach, papaya and cucumber juices.

Environment

Sunlight - bilirubin

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SumariMike
Sunlight is great in reducing billirubin - that's why those of you who have gone to the Carribean and such feel so much better! Get out of the house! Have fun!

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80sfangirl
I spent 3 weeks in Florida where the sun shined every day and noticed a significant improvement even though I was drinking more alcohol and eating foods that aren't "liver friendly". If possible, get as much sunlight as possible ( I am considering going to a tanning booth once a week for the rest of the winter, but I'm a little scared of skin cancer).

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80sfangirl
I spent 3 weeks in Florida, where it was sunny every day. I noticed that I felt way, way better. Even though I was drinking more alcohol than I normally do and eating foods that aren't really recommended, My digestion was better, my fatigue all but disappeared, my insomnia decreased, and my depression improved.

dmy222
I find a sunbed for 5 mins once a week helps significantly with symptoms. (although by friday I'll still be a little tired / experience some brain fog)

I've previousy tried lights in the blue ~ 430nm spectrum as an alternative, I found no real improvement using this - although I should add this was significantly weaker arcadia blue light originally intended for marine tanks. (attempting to find something optimum for bilirubin conjugation with lesser side effects than a sun bed)

Some studies indicate the blue/green wavelengh to be most beneficial without harm. (510nm)
www.biochemj.org/bj/236/bj2360023.htm
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8193477&dopt=Abstract

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froever
To treat newborn infants you need blue light with a wavelength 450nm and frequency(f) is (=)speed of light(c)/wavelength(w)= 6,7 *10exponent14
UVA 320-400 nanometers
UVB 280-320 nanometers
UVC shorter than 280 nanometers
If it is necessary you can calculate the frequency with the formula above.
But I have read that newborn infants are treated with 450nm.
Which is a bit of UVA and the part of blue light( what you can see).
Blue light 400 nm and greater
UVA rays make you brown.
UVB( which have more energy, because the frequenzy is higher) can cause sunburn and cancer.
But only if you make it too long!!!!!!!!!
Important for jaundice is only UVA and blue light in high dose.

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SDRCAN
I have recently been diagnosed with GS though I remember more than 20 years ago having bilirubin of 2.1 --- now it is more or less the same. I remember once it went down to .6 and lately I have been trying to remember any dietary differences between then and now which might have had something to do with the lower level of bilirubin. I had been in the Caribbean for a month just prior to the .6 reading -- eating typical food from the area - black beans, yucca, rice, etc... but perhaps more telling was that I took a lot of sun while there - swimming every day.

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varna
I've tried UV light therapy for a week and noticed great results regarding that annoying yellowness in our eyes.After gradually exposing myself for 30 min to uv light, my yellow eyes were almost gone , at least not so noticeable as before.I also get a litte more energy.

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missycarter
I was always worried about my eyes being so yellow, and what other people thought about it... until my doctor suggested that i start laying in a tanning bed. I thought he was crazy...but then i got to thinking about it..and when a baby is jaundiced when they are born, the doctors put them under a 'billi light' so i tried it... and it works! i lay in the tanning bed a few times a week, and in over 2 years, i've never had yellow eyes!!!

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jeelbear
I have bad experience from the sun lamps in tanning beds in that it makes me feel worse.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=153.topic

gamecubex
So, Anyway, I decided to try a bit of sun bathing in the last few weeks of summer (in the UK) and to my delight it did help reduce the jaundice and made me feel allot less lethargic, It helps by burning off the billirubin present in the skin so it can be removed in your urine, And I must say that it also reduced the itchiness caused by the deposited billirubin in my skin. I would bathe naked for about 2 hours each afternoon for several times a week, I would say that it improved my condition by 50% !

So, when the summer was over I was desperate for more UV rays so I purchased a top quality PHILLIPS sun bed with a uva factor 3 (standard skin type i understand)

So I've been using this about 2-3 times a week for about 5 minutes to start with and then up to 10 minutes recently. It has helped greatly My jaundice is reduced quite a bit and I look much more healthy ( Its not given me a tan that covers up the yellow skin but really has burned off the jaundice), The only downsides are that I am going to have to keep using it every week to keep the jaundice under control and using the tanning bed all the time does give me concerns about skin cancer in the long term. But, I am prepared to take that risk as at the moment as it is making my quality of life much better and I really don't want to go back to the way I was before.

SxSnipeR
I found when i went to thailand in the heat i was 200% more lively, im very very white but not slightly yellow skinned, my eye on the other hand are reaaaaaally yellow. While in the hot thai sun i felt mad with energy, like when i was 7yr old getting high on coca cola. Now im back in rainy uk i feel like @#%$, so low on energy i miss college frequantly even thou i love it and really wanna go, i jus cant summon the energy

Physical Activity

Yoga - brain fog

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DaveH439
I never thought I might say this but I also found that Yoga helped. I don't know how you feel physically as this can also contribute to the lows.

Me:

I tried Hot Yoga last night. This is where you do a certain set of yoga positions in a room heated to 103°F. While to my wife this temperature was oppressive, to me with my lower body temperature it was nice. Naturally, it caused me to sweat a LOT. The session is 90 minutes, and when I finished and walked outside, I felt very clear and focused, with no brain fog at all. The effect lasted maybe 30 minutes. Then I walked the dog through the humid, polluted, pungent air of our neighborhood and as usual, it drained my energy and fogged my mind.

Regular Exercise - not sure

Exercise often acts as a trigger to GS symptoms, but regular exercise is said to be beneficial.

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brett
I also found that regular exercise made me feel better, to start with it was hard to do because i always felt so tired but over some years i built up to do doin a little exercise every night before i slept, not only did this help reduce the symptoms but it also made me sleep easyer and the physical output helped keep stress and the anxious feeling down.

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SumariMike
As an added note: I have heard the liver helps convert the fat stored in muscle into quick energy. With GS, the conversion is slower, which is why those of us with GS get tired when we exercise. Especially, sudden intense exercise. I've found if you warm up appropriately, the energy is more level.

Me:

When exercising, I often do fine at first, but then I hit a wall, basically, where my energy runs out. This isnt the usual wall I'm familiar with from my experiene of track and soccer growing up - it's some effect of GS. My body begins to flush and tingle, a headache comes quickly on, and I feel nauseous to the degree that I have to sit down for a while or I'll throw up. The effect is much stronger with vigorous physical activity such as soccer, and less so with yoga. With soccer it's at about 45 minutes, and with yoga it's an hour.

Massage

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DerekUK
I had a professional shoulder massage a while ago, stressed and depressed, with a headache. I came out feeling fantastic. This lasted the rest of the day.

Me:

I also feel great after a massage, especially a head massage. But then again, who doesnt?

Overall Mix

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arotai
I've had GS since 1984 and haven't found anything that would clear up my eyes.......until now.
I am taking:
NAC (N-Acetyl-L-Cysteine) 600 mg twice a day
Glutamine 1000 mg four times a day
Glycine 1000 mg four times a day
always on an empty stomach.
My eyes are white each morning but tend to color just a bit as the day goes on.

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DaveH439
Ortis brand Api Regis Fresh Royal Jelly 750mg bottle. 15mg taken half an hour before breakfast each day.
Power Health brand Selenium & Zinc in a natural yeast base. One capsule taken twice a day with food.
75mg Boots brand dispersible Aspirin taken with food once a day. (Please consult a Doctor before taking Aspirin on a regular basis.)

After about four days on the treatment I woke one morning and thought that I had had a good nights sleep for a change. No pain in the lower back on waking either. The normal sore throat had calmed. Itching that drove me up the wall in the past had subsided to normal levels. Subsequently during the days I have felt better than I dared to hope and have had no feeling of exhaustion that was a normal state previously anything after 4pm in the afternoon. I have even felt my appetite return as previously choosing food had become as difficult as deciding when to stick pins in my eyes.

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martin
what a difference with me in two weeks. I have been taking vit b12 high dose and some other pills like NAC,Glutathione and Lipoic acid and my fatigue has got a lot better. Actually, my b12 is rather low in the reference range so whether this is causing my ME or not I dont know, but it has certainly helped my fatiue. I believe Lipoic Acid helps the liver to detoxify and protects it. The only thing is that my legs have been aching. It's like a nerve pain all down the leg and comes and goes

nosniborronoele
Martin, I also must mention that tingling/painful nerve sensations can also be a sign of vitamin B toxicity, which can cause permanent damage to the nervous system! If your legs pains only started since you've been taking B12, it may be more than just the ME. Please have your B12 levels re-checked to make sure you're not over-dosing on it!

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kdhsgf
I went from trying many supplements to just taking 1... Livatone plus, plus I take freshly squeezed wheatgrass... which apparenty does wonders for your alkaline levels... I have noticed a difference after taking it for a week... I can do more walking now than before... I feel tired now and again but I have Royal Jelly for emergency purposes... I have never felt better since having been diagnosed with GS before...

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brett
1 a day Royal jelly, (to give me a little extra boost)
2 a day st johns wart (for mild depression and the fact it seems to cure many things)
1 sometimes 2 (depending on meals) a day Quest Enzyme Digest with betaine HCI (on an evening after the last meal, these help to digest protein, carbs and fats )
2 pharmaceutical grade 1000mg glutamine tablets, these are taken a little before i do any exercise or physicall work, there good for the muscles and i was also told at the health shop that people use these to help with stomache and digestion problems..
1 daily multi vitamin tablet

To sum up taking the st johns wart and the royal jelly, definatly helped pick me up a little, however i cant tell if both were a factor in this as i started both at the same time and i was suffering with mild depression.

The enzyme tablet helped me to feel a little less toxic and fogged up

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Deano
Just had flu and had a particularly bad time of it with all the bad symptoms coming back again. (Bilirubin was 41, normally 20s) I started on Milk Thistle, Beetroot Juice, Carrot juice, Leicthin, L-Glutamine, Vit C, Artichoke, Berocca, Vit E, and dandelion...and it has taken me literally 2 days to feel MUCH better again. Still have pain in my liver area, but the fatigue, depression and leg pains have gone so far.

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WhosGilbert
Natural Phase 2 helpers include: Schizandra Root, Sandra Cabot's Livertone Plus (a combination of herbs and vitamins), and vitamin C. Another recent finding is that Globe Artichoke is helpful for liver "sluggishness", gallbladder problems and nausea.

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drstarr
The only things I have noticed to improve the eyes are:
1) Sunlight - from this way of thinking, FSL should be of help.
2) Brocolli - its very good for you in general, but I think something in it does the trick.

Me:

I just took Milk Thistle and SAMe together today and I'm suddenly feeling much better! 800mg SAMe, and so far one dose of Milk Thistle.

General - Sort out later

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SumariMike
I've stumbled across some great research by a group who is listing what chemicals get detoxified by which enzyme. Here's a short list of good and bad things that the UGT1A1 pathway takes care of.

"Good", or "helpful" for UGT1A1 - Clofribrate (lowers triglycerides), Dexamethadsone (suppresses adrenal gland), phenobarb (helps against seizures), Phenytoin (anti-epileptic drug), Ritonavir (Norvir) (Slows HIV Reproduction).

I wouldn't run out and get the "good" ones. None of them sound fun to take.

http://www.selene.com/healthlink/gilbert.html

Milk thistle extract (Silymarin) helps most liver disorders. So do proteolytic digestive enzymes, alpha lipoic acid, coenzyme Q10, black radish, artichoke, turmeric, curcumin, red clover, dandelion, B complex vitamins, especially vitamin B1 (thiamine), Liv 52, lactobacillus acidophilus and the amino acids methionine and cysteine. Weekly injections of folic acid, vitamin B12 and other B complex vitamins may be dramatically effective in some cases where energy levels have been severely impaired.

http://www.gilbertssyndrome.org.uk/Tips%20on%20life%20with%20Gilbert's%20Syndrome.html

Protein - Raising the protein proportion of their diet has provided raised energy levels for some GS sufferers. 

Broccoli, walnuts, blueberries, avocadoes, cabbage, cauliflower, eggs – a combination of natural sulphur compounds and those containing glutathione (the most powerful internal antioxident and liver protector) will aid the breakdown of toxins and chemicals.

Supplements of glycine, glutamic acid and cysteine also produce glutathione and thus aid the detoxification in the phase 2 pathways.

Taurine plays a major role in good liver function via detoxification.

Turmeric has been shown to increase the glutathione and glucuronyl transferease enzymes important for detoxification.

Milk Thistle is used by many people with GS, and has been used for hundreds of years as a herbal remedy for liver disorders and depression (which medicinal herbalists often link).

Carrots and beetroot are fantastic detox aids.

Methionine, an amino acid, activates the phase 2 pathways.

Dandelion tea can stimulate liver function.

Royal Jelly is taken by some people with GS, who have found it beneficial for their energy levels.

Exercise - Sudden exertion can cause fatigue. Some have found that gently increasing fitness levels over time results in an all round improvement in energy and an ability to exert oneself more than previously, without the same consequences.  It’s good advice to everyone, GS or not, to exercise for at least 30 minutes every day.

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Seronac
For those just diagnosed, I recommend:
1) a healthy diet. Eat food as close possible to it's natural state (avoid processed foods, insta-food and fast-food). Also avoid excessive fats and sugars. As much as possible, avoid drugs, anything addictive, and anything that doesn't fuel or build your body (meaning: avoid coffee, tea, tobacco, alcohol, etc.).
2) Maintain your blood sugar levels, even if it means several small meals a day rather than three large ones.
3) Excercise moderately three to five times a week, doing something you enjoy.
4) Get plenty of sleep.
5) Keep records. Record what, when and how much you eat, how much you exercise, when you're sick and how severe it is, how much sleep you get and anything else that might be related to how you feel. Review it occasionally and look for patterns or relationships. Consult with a doctor, dietician or other health care professional. If your doctor minimizes your concerns, treats them lighty or doesn't take you seriously, find another one who will.


 

Things That Arent Working

Note: Either include in sections they refer to or put a link and note in those sections to here.

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BAMBBII
I am really discouraged: I have been taking 6 months of Milk Thistle, VIt B... nothing really change.

PERSONAL: Gilberts Web Forums

sportstud6987
My mom has me taking vitamin B, milk thistle, flax seed, calcuim, and CO-Q-10.. ... i feel like im tryin so much stuff and nothing is helping anything. cause i still fell the same (like garbage)
 
Frontier
I too have tryied all types of vitamins but know of them have help. All they did was give me a upset stomach and put more stress on my liver.

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DaveH439
I tried St John's Wort but that seemed to do very little for me but at least I didn't have a bad reaction to this.

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Piraterocker
The mystery of GS is baffling and is ruining my life. I hope for cure in my body and spirit. But, for now it's seems a daily battle, I have not felt normal in a year, since getting sick, cold type feeling ,never went away.. yeah, i tried zhi hi hyang, you can try @#%$ till your blue in the face, it's not going to matter. It feels the only way to get better would be like a real long fast, but silly GS is suppose to get worse during fasting

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Paco Deth
I started really having problems where I was feeling sickly/naseau all the time. Couldnt hardly leave the house, felt like I could get sick at any moment, stomach and neck/throat very sensitive to where if I or someone else touched it I would gag and possibly get sick… About the only physical problem I had was a Haital Hernia and possibly Acid Reflux. So the doc put me on several AR (Acid Reflux) medicines like Propulsid which didnt help at all and the side affects (esp. bloating) just made me worse.
 
Steph74
Domperidone bearly works for me now though unfortunately!

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rocker8888
There is a book called Breaking the Vicious Cycle by Elaine Gottschall. This is a diet book mainly for Crohn's and Colitis disease patients. I tried this diet and it did not work like the liver cleansing diet (made me worse after my liver diet's sucess).

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bigbadbill
As a new year resolution, I decided to exercise and eat a good diet. In 10 months I have lost over 60 lbs. with a weight considered desirable for my height and a Body Mass Index of 23. The problem is that a recent blood test shows my biliruben to be higher than ever!

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imgeha
when we GSers have a headache, nausea etc does that mean we are detoxing or suffering the symptoms of GS? I am baffled as to why, after a day of eating really well in GS terms, ie, loads of raw fresh fruit, veg and juices, no wheat, dairy, alcohol, lots of water, taking a little exercise and even some sunshine, I feel absolutely terrible the day after. Is this because my intake the day before has prompted the liver to detox, and therefore when it has detoxed I should start to feel better? If so how long will this take? Or is following such a diet having absolutely no effect on my GS symptoms, which are following their cyclical pattern, and it is entirely coincidental that I feel awful after such a 'good' day? What I take in on one day seems to have very little effect on how I feel the next, and after five months of following this strict diet and registering no improvement (it's the headache that drives me mad and miserable) I am very tempted to say 'sod it' and drink a bottle of red wine and eat a lot of cake!!!!... I have had what feels like a hangover for five months.

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imgeha
I have been using milk thistle and Vitamin C for nearly 5 months since my smptoms started, and am doing everything else we're supposed to - no dairy, wheat, alcohol, lots of raw fruit and veg, sleep, exercise - and the disheartening thing is I don't seem to be getting anywhere! Still have a permanent headache, flu-like symptoms, fatigue, irritability, nausea, shakiness and slight jaundice.

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drstarr
St John's Wort (liquid form) TMG, Milk Thistle, Full Spectrum lighting, the list goes on. I have tried many of these, with no sign of improvement.

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StevieRay2
Although I sometimes suffer from headaches, they have been much more frequent lately and I have attributed them to the various herbal and other "treatments" that I have experimented with. I tried NAC and Milk Thistle and that combination seemed to bring on more frequent headaches. I am currently trying dandelion root and this has produced a similar but not quite as severe result.

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Matthew2002
I have been taking it 3 times a day for close to a week and notice squat so far... I've been taking Royal Jelly for over two weeks. Still the slight jaundice in my eyes. Didn't do a thing.

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DaveH439
I used a product called Api Regis Royal Jelly for a period of time and still turn to this at times. It seems to do something no other product can in relation to restoring me to a normal state and it also helps with the fatigue. I know it is full of a range of the B vitamin and there is a link with the nervous system and deficiencies in B vitamins. It is the fresh Royal Jelly and is suspended in a medicinal wine. Liquid seem better than tablets for me in most treatments... The Brand name of the Company is "Ortis" and the product is "Api Regis Fresh Royal Jelly". It is a Belgium product I believe

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gamecubex
I have come to the conclusion that most of these supplements that are available are not really doing any good for gilberts syndrome ,Although, there are a couple more things I may try in the future.

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sarahws
my doctor says that i am suffering from depression, i have tried many anitdepressants and they all make my GS symptoms 10X worse. is Gs and depression linked?? i am currently trying milk thistle and CQ10. the fatigue is the most frustrating part of my symptoms.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=65.topic

Rezan Lebbe
was taking vitamin tablets- a b vitamin one as i was told this was good for you. started this as soon as i found out about GS which was in december. but in may decided to take milk thistle . became very ill at this point . became yellow .,angry - all the usual symptoms. so decided to stop everything . within 2 days i had sharp pains around liver region, and then became better- jaundice went away eyes became white , my moods changed - happier and generally better. diet was still very strict but decided to stick with it . was intrigued at my progress,as my hair was grwing back and my skin was clearing up rapidly , going to the toilet was becoming more regular , urine was clear and could feel fluid and food going into my somach-bizzare (but normal).anyway after 2 weeks i became very ill again , abdominal pains ..... well you know the rest . Its just intrigued me at what made me well . Can you help. Am thinking the niacin in the b vit was bad for me

Pinawa
I took the vitamins for one month and my liver/gallbladder area starting getting more and more painful and fatigue etc all starting getting worse. Which was really depressing, as I had been doing a Candida diet which was helping all they sypmtoms improve. My theory - taking vitamins your body doesn't need makes your liver work overtime trying to get rid of them - like too much alcohol. For a liver that's already struggling to function properly... I stopped taking all the vitamins - am just on one multivitamin now and the symptoms are easing up!

Me:

A few years ago before I knew it was GS plaguing me, I took Ginseng and Gingko Biloba in the form of Ginsana and Ginkoba (brand names). I dont recall much of an effect except for getting heart palpitations so I stopped taking them. This brand does come in somewhat high doses, but if those doses didnt provide an energy kick, then I expect lowering it to prevent the heart palpitations wouldnt help either.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=151.topic

sanjeevgs
i have tried Liv-52 with no tangible results.

Me:

For all the good herbs, supplements, and medications I've taken, there are always days where nothing at all seems to help. This is very distressing at times, as I begin to question whether the things I was taking helped. But after a day or two, they seem to have their positive effect again.

Liver Flush

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=80.topic

orenn
I have been diagnosed with this syndrome 3 months ago.
I have been suffering from chronic fatigue for 2 years ( i am 19.5 years old)

after some sites about the subject I landed on a good one which proved eventually to hold the cure:
the site is curezone.com and the cure was liver flush- just ask at the forum with the same name.
(the procedure is not short)

2 months after the diagnosis I took another blood test (which showed high billirubin)
and then started bowel cleansing as reccomanded
after that i ZAPPED for a week (You can find the procedures on Hulda clarck's book - it is free on the site)
the zapping decreased some of my fatigue by the way

And then at last the liver flush:
dozens of tiny greenish slimey stones with a few 1/2 cm one
I did a blood test that day
now the results came: billirubin in normal range , i am cured

From posts on http://pub83.ezboard.com/bgilbertsweb:

GALL BLADDER
Real amazing book i have it as e-book i need to figure out how to post it.
The Amazing Liver and Gallbladder Flush
A Powerful Do-It-Yourself Tool To Optimize Your Health And Wellbeing
By Andreas Moritz
http://www.ener-chi.com/more_liv.htm
(seems a bit wonky, from a quick scan)
speaks about bilirubin stones in the gallbladder/liver. any elevated unconjuncated bilirubin is toxic to the brain.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=163.topic

spareroom
i did one (liver flush) 10 months ago and still havent recovered properly, was the worst experience of my life,my eyes are twice as yellow as the used to be,even had a scan done to check for stuck stones,but there was none guess i just damaged my liver,defo would not recommend it!!!

Heartburn/Gastric Reflux Meds: Prevacid, Metaclopramide, Propulsid, Nexxium

It appears that medications for heartburn and/or gastric reflux have no effect of the nausea and abdominal pain associated with Gilbert's Syndrome. In fact, in many cases, it makes people feel worse.

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=20.topic

TracyMWall
I went to the doctor and was prescribed Prevacid to control the stomach pains and aid in digestion. This only made me more constipated and blanketed the symptoms. Nothing truly improved.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=77.topic

ClaireS
My GP has given me Metoclopramide for the nausea, but it hasn't worked and just makes me even more tired.
 
ferret119
I go through months of nausea with Gilberts, and metaclopramide is a waste of time for me.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=102.topic

Paco Deth
I started really having problems where I was feeling sickly/naseau all the time. Couldnt hardly leave the house, felt like I could get sick at any moment, stomach and neck/throat very sensitive to where if I or someone else touched it I would gag and possibly get sick… About the only physical problem I had was a Haital Hernia and possibly Acid Reflux. So the doc put me on several AR (Acid Reflux) medicines like Propulsid which didnt help at all and the side affects (esp. bloating) just made me worse.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=24.topic

SumariMike
Gastric reflux is big in our society and comes from (among other things) indigestion from carbohydrates... The Nexxium I was taking for the reflux made me feel worse (esophogial spasms, which are alarmingly like having a heart attack) so I stopped taking it.

Zixorin / Zixoryn (Flumecinol / Flumezinolum)

I've included this here because some people may have heard of it as a drug that reduces bilirubin. It's been taken off the market (it didnt make it far) because its effectiveness was inconclusive and it also turned out to lead to cancer. So this is here just to let people know what happened to it and why.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3982427&dopt=Abstract

[Enzyme inductive effect of zixoryn (3-trifluoromethyl-alpha-ethyl-benzhydrol) in neonatal jaundice]
Zixoryn, (3-trifluoromethyl-alfa-aethyl-benzhydrole) is a new product of the Hungarian Chemical Works of Gedeon Richter Ltd. It induces the mixed function oxydase enzyme system of the endoplasmic reticulum of the liver and has no other pharmacological effects. We have studied the effect of Zixoryn on early hyperbilirubin-aemia. 42 neonates were studied, 21 of them were randomly assigned to be treated and the others served as control group Zixoryn treatment consisted of drops containing 10 mg Zixoryn per ml in a single 20 mg/kg body weight dose through a gastric tube. Results are summarized in Fig. 2. It shows the mean se bi levels during the first six days of life. It is remarkable that the decline of se bi level was much faster in the treated than in the control group. On the third day the difference between the two groups was significant. We may conclude that after Zixoryn administration the se bi level of otherwise healthy newborns decreased significantly faster than that of untreated neonates. No side-effects what so ever were observed. The administration is easy, a single oral dose has a satisfactory effect.

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=71.topic

pauljarvis8
You may be interested to know that in 1989 I assisted Professor Oliver James of the Liver Unit at Newcastle Freeman Hospital in the UK in studying a drug called zixoryn which was intended to relieve the effects of Gilberts Syndrome. As far as I am aware, trials were inconclusive and the drug never made it to the public.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=133.topic

froever
I asked German doctors and professors about Zixorin. They say that flumecinol can develop cancer.

I have found following text for some years ago. That`s why I asked some profs and doctors about this strange medicine.

Hello Denis and Tina and all others with Gilbert Syndrome. I have a excellent medicine for all of you. Medicine is called ZIXORIN (flumezinolum).
You can find anything about this specially designed medicine for hyperbilirubinemiae in www.farmo.ru. (this is Russian medicine, tablets
100 mg.) So, go to you private nearby apotheke and order it, ask before if you need a recepy from your doctor. Our doctors as it seems to me dont know about this medicine, but in Russia, Bulgaria, this is No 1 for Gilbert syndroma, and it is very effective. So, if you use it you will have normal bilirubine level in blood, without feeling tired, yellow skin and eyes, you will feel normal. Best wishes in lovering your bilirubine wants you all Goran from Croatia.

piraterocker
This drug I read was only 20% effective in GS study patients

Branwelt
In reference to your email, Zixorin is no longer produced by Gedeon Richter Ltd.
Thank you for your interest.

Yours sincerely,

Judit Fold
PR assistant
Gedeon Richter Ltd


Things That Make It Worse

Medications

Acetaminophen - Tylenol - liver damage

The information on acetaminophen (Tylenol) has gone back and forth a bit, but it's settled on an answer. Here's what happened:

There was an original study (see below) that showed that people with GS had 31% slower processing of acetaminophen, so it was thought to be processed by UGT1A1, the enzyme deficient in GS. The advice given was for people with GS to avoid acetaminophen. Later experiments showed that acetaminophen was actually processed by UGT1A7, and so acetaminophin was given the green light for people with GS. Later still, it was shown that most people with the UGT1A1 mutation ALSO had an even worse mutation in UGT1A7. This explained the results of both the previous studies, and justified the results of the original experiment - that people with GS should avoid acetaminophen (Tylenol).

Since we have problems metabolizing it, the effect is that it sticks around in our bodies a lot longer than most people. Since acetaminophen can cause liver damage, it seems best to avoid this.

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel
 
One drug in particular that is receiving a lot of attention with this disorder is acetaminophen, the active ingredient in Tylenol. The glucuronidation pathway is directly and primarily involved in its complete elimination from the body. Acetaminophen is to some extent broken down by Phase I liver enzymes into a far more active and toxic form of the drug. People with Gilbert's Syndrome are unable to complete the detoxification process which leaves the extremely toxic substances in the liver for an extended amount of time causing damage and cell death. It has been seen that the typical person with GS has a 31% slower rate of glucuronidation of acetaminophen. {Pizzorno, 156}.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=1732127&query_hl=1&itool=pubmed_DocSum

Decreased glucuronidation and increased bioactivation of acetaminophen in Gilbert's syndrome.

Acetaminophen glucuronide formation in subjects with Gilbert's syndrome was 31% lower than that in normal controls (0.27 +/- 0.05 vs. 0.39 +/- 0.03; P less than 0.05), and bioactivation was 1.7-fold higher (3.5% +/- 0.4% vs. 2.1% +/- 0.3%; P less than 0.05).

Sulpha Drugs - not sure

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=84.topic

kathyus
I am allergic to penacilian and sulpha drugs. I was able to take both of them when I was younger and seemed to develop an intollerance.
 
Jenna
I have had GS for about 6 months as far as the doctors can guess, and I was prescribed a sulfa medication, and I got an itch that wouldn't go away. I heard that people with GS shouldn't take sulfa medications, and now I know why.
 
Jeelbear
Sulfa drugs don't agree with me either.

Antibiotics, Penicillin - symptom trigger

http://www.gilbertssyndrome.org.uk/Gilbert's%20Syndrome%20All%20About%20Bilirubin.html

Drugs can also affect the measurements of bilirubin, and many can increase it such as steroids, some antibiotics, antimalarials, codeine, diuretics, MAO inhibitors, nicotinic acid, oral contraceptives, and others.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=84.topic

kathyus
I am allergic to penacilian and sulpha drugs. I was able to take both of them when I was younger and seemed to develop an intollerance.
 
Irina
The onset of my GS was actually triggered by allergy to antibiotic I was given for my sinus allergies and post-nasal drip.
 
Jeelbear
Am very allergic to penicillin (sp) and had serious reaction to it with hives, swollen face, neck, etc and doc said do not ever take.

Irinotecan / CPT-11 / Camptostar - processed by UGT1A1, severe reaction

This is a cancer treatment.

http://annonc.oxfordjournals.org/cgi/content/abstract/8/10/1049

1997
BACKGROUND: CPT-11 is hydrolyzed to its active metabolite SN-38, which is mainly eliminated through conjugation by hepatic uridine diphosphate glucuronosyl transferases (UGTs) to the glucuronide (SN-38G) derivative. Preclinical studies showed that UGT*1.1 is the isozyme responsible for SN-38 glucuronidation. Patients with Gilbert's syndrome have deficient UGT*1.1 activity, therefore may have an increased risk for related CPT-11 toxicity.

Naproxen - not sure

I use naproxen (Aleve) pretty regularly without any ill effects.

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=115.topic

AKJoy – 3/28/05
I haven't been able to narrow down the cause, except that it is usually related to some OTC (over the counter) medicine I've taken for sinuses, or menstration… The last time this happened, I think it was because I had taken ALEVE for a sinus infection. I took the recommended dose, but the next day I had one of these "episodes". This is scarey too, because I don't understand it. Today's episode seems to have been triggered by a rootbeer I drank yesterday at lunch. Yes, a rootbeer. I stopped drinking any type of carbonated drinks about three years ago because I would have horrid fatigue within hours. I also have to avoid colorants in foods and beverages. The only other possibility is MIDOL, which I took one tablet (220 mg Naproxen sodium) this morning...about 11 hours ago.

Medications General - Sort

OK MEDICATIONS
http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=27.topic

SumariMike
Here's what I had during (and just before surgery), so as a GS sufferer, you can know for the future that I handled it just fine, and hopefully so can you (if necessary): Fentanyl, Demerol, Versid, Sodium Pentothal, Sevoflurane (sp?), Thiopental, Zemuron, Neostigmine, Robenue(sp?), Reglan.

Supplements

Cod Liver Oil, Halibut Liver Oil - not sure

http://www.selene.com/healthlink/gilbert.html

Avoid any nutritional supplements containing high doses of vitamin A, niacin, cod or halibut liver oil or vitamin D.

Vitamins

Niacin / Vitamin B3 / Nicotinic Acid - raises bilirubin levels

The daily recommended value of Niacin is 20mg. So the dose required to double or triple that is only 2.5x the daily recommended value.

http://72.14.203.104/search?q=cache:Qe61E6gOVR4J:www.kumj.com.np/past/Vol1/issue3/vol1_187.pdf+%22A+case+report+of+Gilbert+Syndrome.%22&hl=en&gl=us&ct=clnk&cd=1&client=firefox-a

• Nicotinic acid: Intravenous administration of 50 mg of nicotinic acid results in a 2-to3- fold rise in plasma unconjugated hyperbilirubinemia within 3 hours.  

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=193.topic

WhosGilbert
*Nicotinic Acid/ Niacin (Vitamin B3) is contraindicated in GS.....supplements as low as 50mg have been shown to increase unconjugated bilirubin two to three-fold in three hours! This amount in a balanced B Complex or multivitamin should be O.K. though, I think, as B3 is then buffered by all the other vitamins. Only B3 on it's own is a definite no-no. Many of us find B Complex tablets are helpful.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=111.topic

gilbertgrape
I have read in sveral places that a mere 50mg.'s of vitamin B3 or nicotinic acid or niacin or niacinamide will cause a jump in the levels of unconjugated bilirubin. If this is the case, I am assuming anyone with GS would want to avoid any supplement containg those things, most multivitamins and B-Complex vitamins have this.

http://www.selene.com/healthlink/gilbert.html

Avoid any nutritional supplements containing high doses of vitamin A, niacin, cod or halibut liver oil or vitamin D.

PERSONAL: Gilberts Web Forums

Kimmy Kims
My doctor recomended that I get B-Vitamin injections to help lose weight, help manage my GS symptoms, and help with my neck (was in a car accident when I was 18 - had 3rd degree whiplash).

So hey.. if it'll help, I'll go for it.. so I did. BIG BIG BIG MISTAKE!!! On those injections, you have to eat a certain diet: 2 3.5oz protein servings/day, 16oz non-starchy veggies, 2 fruits (if you are in ketosis ONLY), 2 'breads' (if you are in ketosis ONLY) and 2 cups jello light. Anyone with GS/IBS symptoms knows that a high protein, low carb diet where you eat 16 freekin ounces of veggies a day is a BIG mistake! Given, I lost 5lbs.. but couldn't maintain ketosis because of my liver. There is Niacin in the B-Vitamin injections - which I recently found out anyone with GS is sensative to - typically, the more GS symptoms you have, the more likely you are to be allergic to Niacin. So this hell I put myself through for months left me in an even worse state then I was in previously. My weight just fluctuates regardless of what I eat - my periods (which were totally regular prior to starting these injections) are completely irregular, I have chronic headaches, I sleep up to 16 hours each night - wake up and sleep on the couch - I have NO energy!!

Vitamin A - not sure

http://www.selene.com/healthlink/gilbert.html

Avoid any nutritional supplements containing high doses of vitamin A, niacin, cod or halibut liver oil or vitamin D.

Vitamin D - not sure

http://www.selene.com/healthlink/gilbert.html

Avoid any nutritional supplements containing high doses of vitamin A, niacin, cod or halibut liver oil or vitamin D.

Hormones

Birth Control Pills - processed by UGT1A1, increases estrogen levels, mood swings, headaches, fatigue, tiredness, jaundice, raises bilirubin

http://www.gilbertssyndrome.org.uk/Gilbert's%20Syndrome%20All%20About%20Bilirubin.html

Drugs can also affect the measurements of bilirubin, and many can increase it such as steroids, some antibiotics, antimalarials, codeine, diuretics, MAO inhibitors, nicotinic acid, oral contraceptives, and others.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=119.topic

Barney88
Have any other users of the pill had to stop taking it,as it was making their GS syptoms worse?I was becoming very jaundice and tired towards the end of just a 3 month period of taking it.
 
Kathyus
I find that being on the pill makes me extremely irritable and moody. These are symptoms I have when I have not eaten for a long time also. I stopped the pill a couple of months ago after being on it for two years and I feel much better.
 
Susan
I also had to stop using bcp due to extreme mood swings and headaches... After being off the pills for six months now I feel like myself… I was on Aleese for the last year and a half that I took the pill. It didn't give me the mood swings or headaches as bad as the others… Orthocept is the worst I was on. It turned me into a monster.
 
Mkhnjy
I have just started back on the pill after being off it for about 5 years to have children. Since starting back on the pill, only two weeks so far in fact, I have felt absolutely revolting and am seriously considering going off it again to feel better. My GS symptoms have been almost the worst ever since I was diagnosed at the end of last year and I am putting it down to the pill after reading these related posts as it's all too much of a coincidence… (later) I have found the contraceptive implant Implanon has worked well for me as opposed to the oral contraceptive pill since being diagnosed with GS late last year. I was taking Triphasil.
 
Skydove
I took only 9 birth control pills...turned severly jaundiced, lost lots of weight adn nearly died...that was 12 years ago. I was just 'diagnoised' with Gilbert's this year.
 
Irina
I have just tried to go back on Triquilar but within a few days of starting the pill the fatigue and sleepiness all came back again so I have decided to stop it.

PERSONAL: Gilberts Web Forums

polarshine
Doctors usually before giving (birth control) pills made blood tests (especially because of liver). If they found GS they dont recommend taking pills-they can make yours bil. level in blood high!

Chemicles

Fluoride - enzyme inhibitor

http://www.diagnose-me.com/cond/C319040.html

John Lee, MD, a physician in private practice has stated that elevated bilirubin levels can be reduced in Gilbert's syndrome by avoiding fluoridated water and other sources of fluoride. This physician has seen bilirubin levels rise again when fluoride has been reintroduced. Gilbert's syndrome may be due to a partial deficiency of the hepatic enzyme glucuronyl transferase. Fluoride, being an enzyme inhibitor, reduces the enzymes' activity even further.

["Fluoride Linked to Gilbert's Syndrome", Lee, John R., M.D., Cortlandt Forum, September 1990;101: pp.31-33]

http://thyroid.about.com/b/a/040397.htm

[Fluoride] is an enzyme poison. Enzymes are complex protein compounds that vastly speed up biological chemical reactions while themselves remaining unchanged. As you read this, there is occurring in all of us a vast multitude of these reactions to maintain life and produce the energy to sustain it. The chains of amino acids that make up these complex proteins are linked by simple compounds called amides; and it is with these that fluorine molecules react, splitting and distorting them, thus damaging the enzymes and their activity. Let it be said at once, this effect can occur at extraordinary low concentrations; even lower than the one part per million, which is the dilution proposed for fluoridation in our water supply.

Moreover, fluorides are cumulative and build-up steadily with ingestion of fluoride from all sources, which include not just water but the air we breathe and the food we eat. The use of fluoride toothpaste in dental hygiene and the coating of teeth are further sources of substantial levels of fluoride intake. The body can only eliminate half of the total intake, which means that the older you are the more fluoride will have accumulated in your body.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=3.topic

williecanuck
here is alot to watch out for including flouride which they add to the water here.

Chlorine

Me:

I've found to my horror that spending the afternoon in a swimming pool has led twice now to feeling horrible for two days afterwards. One pool was chlorinated and the other was not. It could be a matter of dehydration rather than chlorine, though I did drink a lot of water the second time I swam. Taurine is the major amino acid required by the liver to detoxify chlorine. Sources of taurine are meat, eggs, dairy, supplements, and Red Bull.

Swimming in the ocean had no such effect. In fact, I often feel vitalized when swimming in the ocean, and no ill effects follow.

http://p075.ezboard.com/fgilbertswebfrm2.showMessage?topicID=93.topic

UKMARCO
Drink plenty of (bottled) water at least 2 litres a days. Try and stay clear of tap water as most areas have chlorine and other contaminates that an over sensitive liver doesn't like. A liver consultant has told me that Evian is the best-bottled water to drink for its finely balanced mineral qualities.

PERSONAL: Gilberts Web Forums

kdhsgf
stay away from chlorined water, it's not good for us sufferers at all...

Anesthetics

Midazolam & Fentanyl - drop in heart rate

PERSONAL: Gilberts Web Forums

concerned aunt
Does anyone have any knowledge of how we might proceed or what in particular may have caused this severe reaction? The drugs used to sedate him prior to the oral surgery were, midazolam and fentanyl. His liver was unable to push the drugs out of his system because of the Gilbert's disease and it caused his heart rate to drop.

Ether - nausea, death

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=84.topic

Jeelbear
Almost died on the operating table from ether reaction long ago.

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=55.topic

WhosGilbert
I've tried gas at the dentist's and almost slid off the chair even when it was apparently on the lowest setting.....and it made me quite nauseous too. O.K. I guess that wasn't much fun, but I've had surgery and also found the pre-op injection an amazing "trip" ! Somebody should have filmed me laughing at everybody in sight! After the surgery, I was kept in recovery hours longer than was normal (and was actually told I'd taken up precious bed-space !!) and didn't fully come "out of it" until 24 hours after that. I remember lying like a Rag Doll in the bed, and having to be sponge-bathed and spoon-fed because I couldn't process the anaesthetic properly!! Felt like a strange, numb hang-over !

Versed, Dialudid - UGT1A1 substrate?

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=123.topic

80sfangirl
Back when I was going through the Dx phase of GS, my doc discovered that I had a very small umbilical hernia right in the inside corner of my belly button. The surgeon recommended that it be repaired immediatly, not because my intestines were in any danger of strangulation, but because I have a bad history of allergic reactions to general anesthesia. It has happened 2-3 times in the past. 2 years ago, I had to have my left tonsil removed and had my last bad reaction. I basically do not wake up well. I generally go into hysterics and take much longer than most people to come to. i have been told that I should not receive Versed and Dialudid which are the narcotics given to sedate before the anesthesia is fully administered. Anyway, long story short, i was very concerned when I went in for the hernia repair and I asked the anesthesiologist if it could have anything to do with the GS. At first he said no, and then to his credit, he stated that he wasn't sure. By the time they wheeled me (still wide awake) into the OR, he came and told me that he did a search on MMI(?, must be some doctor site) and found that PEOPLE WITH GS HAVE DIFFICULTY METABOLIZING NARCOTICS!!!!! Needless to say, he administered non-narcotic sedation and a local and I recovered well.

Note: I've read that narcotics arent substrates of the enzymes affected by GS. I'll look for the study.

Unknown Anesthetic Broken Down By The Liver

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=55.topic

kmshiplo
I recently had some dental work done. The local anesthetic which normally takes 3 minutes to work, for me, took over an hour to take effect and I was frozen solid for 5 hours afterwards. When I had surgery 18 months ago, the anesthesiologist assured me he would be talking to me 5 minutes after the surgery finished. I never saw him again as I wouldn't wake up following the surgery. I was kept in the Recovery Room for several hours until I came to.
 
Paul B Moore
I have had similar experiences. First of all with the pre-med I was as high as a kite - it was great!! However, the general anaesthetic took many hours to wear off and was accompanied by nausea. Local anaesthetics ususaly work OK but take a while to wear off - fortunately without any nausea.
 
girl in minority
iv had similar experiences with anaesthetics, when i was about seven i had minor surgery but needed a general anaesthetic, it took two doses to knock me out and hours for me to wake up, feeling really crap!

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=123.topic

uncletyty
I've had the same problem with anesthesia in the past. I've had my tonsils, wisdom teeth, appendix removed and hernia repaired. I spent many days more in the hospital because I couldn't process out the anesthesia with my liver. I would be sleepy, spacy, and have a los of editing my comments. (not fun in a gocery store) When I was 12 I spent 7 days in the hospital for having my tonsils out. Scared the hell out of my doctor and nurses.

My last operation was a hernia operation a year ago. I spoke with the surgeon and he made sure that I was given an anesthesia that was NOT broken down by the liver, but with oxygen in the blood. It is much more work to monitor for the doctors, but I woke up as they were wheeling me out of the operating room and felt relatively good from the first minute out. No weeks of grogginess.

PERSONAL: Gilberts Web Forums

uncletyty
Operations are hard on me with the Anesthesia. I did have my hernias fix last year and they used a med to put me out that was broken down by oxygen and not my liver. I woke up right away without weeks of grogginess.

Recreational Drugs

Alcohol - stresses the liver

http://www.gilbertssyndrome.org.uk/Tips%20on%20life%20with%20Gilbert's%20Syndrome.html

Alcohol - People with GS seem sensitive to alcohol to differing degrees.  The best advice is to be aware that it can cause stress to your liver and see how much or little your body is happy to process.

Marijuana - smoking stresses the liver

Marijuana is one of the best known cures for nausea. However, when smoked, the smoke will overwhelm the linked UGT1A7 mutation. This link to jaundice may indicate an overall liver strain, or that something in the plant is also glucuronidated via UGT1A1.

PERSONAL: Gilberts Web Forums

benissimo
Luckily I've never been a big smoker but I enjoy a spliff. And the simple fact is, I believe that smoking does affect me, in direct contradiction to professional medical advice. Why? Because a few hours or even minutes after a spliff my eyes are a beautiful shade of yellow. If I leave off for a few days they get better. Wow. And do you know I've never studied medicine?

Ecstacy - triggers symptoms

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=74.topic

gsedward
I occasionally take ecstacy when I'm out clubbing and i've found that for the next few days I get serious Gilberts. I go yellow and the fatigue sets in as well.

Herbs

Milk Thistle / Silymarin - digestive problems, jaundice, fatigue, joint pain, abdominal pain, raises estrogen

Milk Thistle seems to help some people and make things worse in some people. There is another section on its positive effects up above. Give it a try and see if it works for you.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=197.topic

Apoplexic
I don't know if it comes down to the brand or quality, but I've found that Milk Thistle actually induces IBS in my case. Apart from that, I also have not felt any improvement as a result of using it.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=85.topic

Trinityonline
Sometimes when I take Milk Thistle though it seems to stimulate my bile even more which makes my eyes go yellow and gives me bad fatigue, obviously though its the best thing recommended for GS, so it obviously helps some and not others.

dmy222
milk thistle only makes things worse (for me). Only thing thats ever helped so far is sunlight & uv rays!... Just to note, many people whom have tried taking milk thistle have found it makes there symptoms worse. It detoxifies using phase 1 pathways and not the phase 2 relevant to gilberts. I personally found it made me more tired/lethargic and my eyes more yellow. Obviously different medications effect different people in different ways - by all means try it but be wary of any negative effects.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=107.topic

mrstick
(me: does milk thistle help?) NO.... not in my experience. I used the ticture from Holland & Barrett (uk) for just over 2 months.

ALS02
(me: does milk thistle help?) NO ... it didn't do much for me. I gave it a 2 month trial... I have tried milk thistle twice now and each time after about two days the joints in my fingers (my knuckles) really start to ache. I have also had twinges in my feet and elbows. Having stopped the milk thistle the aches continue for about a week.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=151.topic

sanjeevgs
i have tried Silymarin no tangible results.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=65.topic

Paul B Moore
I had what I thought was arthritis off and on about 10 - 15 years ago and followed dietary advice which almost completely resolved the problem. The same dietary advice I believe has helped control my GS. However, for just over a year now I have been taking milk thistle (I think about 5250 mgs daily) and in the last 6 weeks have noticed my joint problems returning. I am suspicious of a link so will probably take a rest from milk thistle and see what happens.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=63.topic

secraser
I maybe should add that I don't get any relief by using milk-thistle. I get very tired and heavy limbed as soon as I start taking it.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=55.topic

WhosGilbert
I've tried it and thought it too strong a herb for me......I'm on it again now & feel terrible, but will stick it out this time and see what happens!(lots of water....!)

Doug
(me: Does Milk Thistle have any effect on Jaundice?) Some actually have their jaundice worsened, because milk thistle cleans out the liver and introduces it all to the bloodstream, you need a stage 2 cleanser to get it out.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=38.topic

WhosGilbert
I have tried Milk Thistle and have also had some of my symptoms worsened by taking it, therefore I stopped.

Milk Thistle helps mostly with what's called "Phase 1" detoxing, and not, as far as I know, with "Phase 2", i.e: not just "gathering up the bad guys", but "throwing them out the door", which is why initially symptoms get worse, I think.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=48.topic

Samuel8
only recently I came across this site and found about this milk thistle, and been taking it for about a week now, no change so far

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=44.topic

benissimo
I've read all about Milk Thistle, and this might just be coincidence, but since starting taking it my eyes have been much worse! I don't get many other symptoms other than yellow eyes and slight pain in abdomen. But I was expecting Milk Thistle to help!

http://p075.ezboard.com/fgilbertswebfrm2.showMessageRange?topicID=149.topic&start=21&stop=40

Cstarr
I drink green tea and have started taking Milk thistle but havent noticed any real changes so far.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=196.topic

theredbulljunky
for the record, milk thistle did diddly squat for me,i tried to believe the hype,and convince myself it helped,but if anything i think it made me worse,who says it works and recomends it,?was it a guy with gilberts who cured himself and decided to sell it i doubt it,if you find it really does help you,i really am happy for you,but there is a lot of the "placebo" effect going on with these supplements

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=195.topic

jaindough
I was recently diagnosed with Gilbert's and, as a result of much researching on the internet, decided to try taking milk thistle to help with my symptoms of GS. After taking two caps of milk thistle daily I started feeling a slight, persisting nagging pain in my upper right quadrant and I could have sworn my sclera became more darkly yellow. I continued for about two weeks, thinking I would start to feel the positive effects of the milk thistle, but soon gave up.
 
Andrew1974
i recently tried milk thistle and had pains in the same area.the same day i took it i had juiced about 5 lots of veg and thought the pains were maybe trapped wind so i stopped taking the milk thistle and continued juicing without discomfort.
 
Kdhsgf
Never really noticed any great benefits from only taking Milk Thistle, I had a mild improvement on Livatone plus, but even better on juiced wheetgrass.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=570.topic

LadyWear
I just recently read that Milk Thistle stimulates estrogen too....if you read Julia Changs web site (good liver site) she mentions many foods and supplements that are ordinarily good for the liver but still stimulate estrogen. www.sensiblehealth.com.

Diets

Fasting - raises bilirubin

Fasting causes bilirubin levels to rise by 2-3 times within 48 hours. It's one of the ways doctors used to test for Gilbert's Syndrome.

http://www.kumj.com.np/past/Vol1/issue3/vol1_187.pdf

Fasting: This usually results in a 2- to 3- fold rise in plasma unconjugated bilirubin within 48 hours of a fast that returns to normal levels within 24 hours of resuming a normal diet.  Although unconjugated bilirubin levels also rise with fasting in patients with haemolysis or liver disease, the magnitude of the rise is less than that observed with Gilbert syndrome. A similar rise in plasma bilirubin also is observed with normocaloric diets deficient in lipids and reverse promptly with lipid replacement.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=44.topic

SumariMike
I did a 3-day fast one time to test food allergies. Man, did I turn yellow. Also, I got really dizzy and nearly passed out. I did drink water and fluids and had some vegetable broths, but other than that, a 3-day fast. I bet my billirubin was off the charts.

Foods

Soy - UGT1A1 substrate, raises estrogen

Soy & Genistein (major section)

Soy appears to be bad for those with GS on many fronts. First, it has goitrogenic properties, which means it causes growths on the thyroid gland that reduce output of thyroid hormone. There are already links to hypothyroidism with GS. Secondly, it is an estrogen and raises estrogen levels. Estrogen is a substrate of our deficient enzymes, leading to a rise in overall body estrogen levels and competition for the low amount of enzyme that we have. Third, high levels of estrogen are protective for candida. This section goes into detail about soy and it's main isoflavone, genistein.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=176.topic

SumariMike
I also discovered I have a soy allergy (soy is in almost every single processed and unprocessed food you can find). Cutting down the soy has helped not only my general allergies but also my bilirubin.

Caffeine - headache, fatigue

I personally find caffeine helps a lot with my energy, but only drink it a couple times a week.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=157.topic

sborzea
I get terrible headaches if I have any pop with caffene. Anything with Aspartame (phenylalanine) (fake sugar) is worse.

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=8.topic

BuffaloMike
stay away from anything with caffeine - coffee, tea, chocolate, etc. - it knocks me down fast..

Artificial Sweeteners - Aspartame / Nutrasweet, Splenda - headaches, brain fog

http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=157.topic

sborzea
I get terrible headaches if I have any pop with caffene. Anything with Aspartame (phenylalanine) (fake sugar) is worse.

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

Avoid artificial sweeteners see www.dorway.com

http://www.gilbertssyndrome.org.uk/Tips%20on%20life%20with%20Gilbert's%20Syndrome.html

Artificial sweeteners – can cause an increase in the ‘brain-fog’ experience.

Fatty / Greasy / Fried Foods - digestive problems, fatigue, symptom trigger

Those with gallstone symptoms generally have trouble with fatty food, and these should be avoided. Otherwise, there is evidence that fatty foods helps.

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=124.topic

jaindough
I get weird IBS symptoms when I eat very greasy foods...the attacks are severe and extremely unpleasant and painful.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=143.topic

NeverWithIt
Anyone suffer from what I can only describe as an addiction to the foods we shouldn't go near, eg processed sugars, fatty foods? I'm not talking the odd want but a real need to have say, chips or a chocolate bar.

If I have any of these types of things, the GS kicks in big time. I've even been known to fall asleep for a couple of hours. (I've been checked for diabetes and hypoglycaemia but have come up negative). I can fight the cravings for a few days but then I reach a point where I'm ready to kill for a bag of chips. ;-)

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

• Avoid deep fried and fatty foods.

http://www.gilbertssyndrome.org.uk/Tips%20on%20life%20with%20Gilbert's%20Syndrome.html

Fatty foods – digestive problems seem common in GS and some people find fatty foods put a lot of stress on their digestive system.

PERSONAL: Gilberts Web Forums

davidsmother
fatty foods and antibiotics, along with stress, trigger the symptoms the worst

Sugar - hypoglycemia, fatigue

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=143.topic

Susan
I have a major sweet tooth for junk candy - not fancy chocolates - I just want the cheap convenience store stuff. If I allow myself to indulge I feel great for a short time, but then I can feel my blood sugar drop like a rock and I get all shaky.

http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=143.topic

NeverWithIt
Anyone suffer from what I can only describe as an addiction to the foods we shouldn't go near, eg processed sugars, fatty foods? I'm not talking the odd want but a real need to have say, chips or a chocolate bar.

If I have any of these types of things, the GS kicks in big time. I've even been known to fall asleep for a couple of hours. (I've been checked for diabetes and hypoglycaemia but have come up negative). I can fight the cravings for a few days but then I reach a point where I'm ready to kill for a bag of chips. ;-)

http://www.gilbertssyndrome.org.uk/Tips%20on%20life%20with%20Gilbert's%20Syndrome.html

Sugary foods and refined carbohydrates – these mess with the bodies energy levels, and if you’re suffering with fatigue then these won’t help balance your energy. Plus sugar can impair your liver’s ability to detoxify.

Meat & Dairy, to Avoid Antibiotics & Hormones - symptom trigger via antibiotics and steroids

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

• Avoid ALL dairy products - dairy foods contain high levels of antibiotics, steroids and artificial growth hormones as this is what the herds are treated with in today’s high tech dairies to prevent disease and boost milk production. As with humans where substances go through into breast milk it is the same for cattle - only they neglect to tell you this in the advertisements when they are telling you how great milk is. If you need further info on this please visit www.notmilk.com

• Limit chicken and turkey and eggs that are not free range/organic as these often contain artificial growth hormones, antibiotics and steroids that increase the livers workload.

Hydrogenated, Damaged Fats - not sure

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

• Avoid ALL margarines and similar type spreads manufactured from hydrogenated damaged fats

Foods General - Sort

http://p075.ezboard.com/fgilbertswebfrm4.showMessage?topicID=124.topic

auggie
My sister and I have always thought that we had "food allergies". We just can't eat certain things without paying a price. I have basically learned what I can and cannot eat without getting sick. I can't eat alfredo sauce without getting sick 15 to 20 minutes later...the tummy cramps are so severe that I sweat and have to lay on the floor and then either puke or have diahrea. The same thing happens with chicken parmigan from Olive Garden.. I have managed my diet quite well and haven't been sick like that in a long time. I struggle now with my energy level and the foggy brain.

http://www.selene.com/healthlink/gilbert.html

Liver disease of any kind benefits from dietary changes. Avoidance of animal products (eggs, dairy, beef, pork, raw fish, shellfish, etc.), simple sugar, yeast, alcohol and highly processed foods reduces the load of potential toxins presented to the liver.

The manufacture of bread, beer, wine, cheese, aged and cured meats and tobacco products all involves a fermentation process that produces fungal mycotoxins which can adversely affect the liver. Peanuts are contaminated by fungal mycotoxins and are also best avoided. The consumption of small amounts of these foods may be tolerated by those with healthy immune systems but are potentially dangerous to those suffering from chronic liver disease.

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

• Avoid - all processed and refined foods, refined sugars, fatty foods, fried foods, 'junk' foods, coffee, tea and soft drinks. Avoid overeating; eat small regular meals.

PERSONAL: Gilberts Web Forums

Make You Feel Worse: Fried foods, dairy, alcohol, artificial sweeteners, tea, coffee

Environment

Smoke or Diesel Exhaust - symptom trigger

The weakest enzyme of the three affected by Gilbert's Syndrome processes carcinogens out of smoke, including diesel exhaust, smoke from wood fires, cigarette smoke, and smoke from burning coal and fat (as in a cook-out). These things can trigger an increase in GS symptoms.

General - Sort out later

PERSONAL: Gilberts Web Forums

Other substances which are detoxified by a healthy glucuronidation pathway are aspirin, tolbutamide, menthol, vanillin (synthetic vanilla), food additives such as benzoates, and some hormones. {Pizzorno, 105}. GS sufferers will have trouble detoxifying and eliminating all of these substances. Many common medications and anesthetics are also dependent on this important detoxification pathway.

 Avoid:

BIBLIOGRAPHY
Ackerson, Amber. "Dietary Regulation of Detoxification." Alternative and Complementary Therapies. September/October 1996, pp. 310-315.
Bland, Jeffrey S. New Perspectives in Nutritional Therapies: Improving Patient Outcomes. HealthComm, Inc., Gig Harbor, Washington, 1996.
Murray, Michael and Joseph Pizzorno, Encyclopedia of Natural Medicine. Prima Health, Rocklin, CA, 1998.
Pizzorno, Joseph. Total Wellness. Prima Health, Rocklin, CA, 1998.
Rybacki, James J. and James W. Long, The Essential Guide to Prescription Drugs. HarperCollins Publishers, New York, NY, 1999.

PERSONAL: Gilberts Web Forums

SumariMike
I've stumbled across some great research by a group who is listing what chemicals get detoxified by which enzyme. Here's a short list of good and bad things that the UGT1A1 pathway takes care of.

"Bad", or "slowed down" through UGT1A1 - Anthraquinones (act as a powerful laxative; found in aloe), Ethinylestradiol (used in some oral contracepts - found to cause cancer in lab animals), Irininotecan (anti-cancer drug, VERY harmful to GS patients), Oripavine Opioids (used in some anasthesia - reduces perception of pain w/o loss of consciousness), Coumarins & Flavinoids (not sure - found in plants/fruits, but I am not sure about these two), flavopiridol (used to treat cancer).

http://www.emedicine.com/med/topic870.htm

• Dehydration
• Fasting: This produces an increase in the plasma unconjugated bilirubin level.
• Intercurrent illness, such as a viral infection
• Menstrual periods
• Stress, such as trauma and overexertion

http://www.liverdoctor.com/Section4/gilbertssyndrome.asp

Those with Gilbert’s syndrome need only follow a healthy diet and avoid liver toxins such as excessive alcohol and liver toxic drugs. Bilirubin levels tend to rise if the diet is poor, and during fasting, or mild illnesses, which may cause the skin to yellow.

http://www.gilbertssyndrome.org.uk/Tips%20on%20life%20with%20Gilbert's%20Syndrome.html

Other suspects include – fluoride, peppermint, vanilla, menthol and the B vitamin niacin (on its own, but ok with other B vitamins)

http://www.gilbertssyndrome.org.uk/What%20is%20Gilbert's%20Syndrome.html

It seems that certain activities may make these symptoms worse, by placing further stress upon the liver.  Missing meals, lack of sleep, vigorous exercise, illness and stress can all bring on the symptoms.

http://www.gilbertssyndrome.org.uk/Gilbert's%20Syndrome%20All%20About%20Bilirubin.html

Drugs can also affect the measurements of bilirubin, and many can increase it such as steroids, some antibiotics, antimalarials, codeine, diuretics, MAO inhibitors, nicotinic acid, oral contraceptives, and others.

Note: This could explain the negative responses to antibiotics, and a contraindication to Dextromethorphan.

PERSONAL: Gilberts Web Forums

Gilbert's Syndrome by Marina Eckel

Other substances which are detoxified by a healthy glucuronidation pathway are aspirin, tolbutamide, menthol, vanillin (synthetic vanilla), food additives such as benzoates, and some hormones. {Pizzorno, 105}. GS sufferers will have trouble detoxifying and eliminating all of these substances. Many common medications and anesthetics are also dependent on this important detoxification pathway.

Avoid:
•Tylenol, aspirin, clofibrate, tolbutamide, menthol, vanillin (synthetic vanilla), food additives such as benzoates, any medication which requires the glucuronidation pathway. {Pizzorno, 105}. Be sure to investigate any anesthetic that will be used. Many require this pathway and can cause adverse reactions if administered (including seizures).Meaning: It’s made worse by dehydration, fasting, illness, stress, acetaminophen, fluoride, refined carbs, sugar, artificial sweeteners, fatty foods, alcohol, peppermint, vanilla, menthol, niacin.

PERSONAL: Gilberts Web Forums

Here's the "don't" drugs: anthraquinones, coumarins, flavinoids, oripavine opioids, phenolic compoounds, acetaminophen-hi pc [It's interesting to note that this is here, but only in large quantities - Tylenol!], all-trans-retinoic acid, anthraflavic acid, *buprenorphine, ethinylestradiol, eugenol, irinotecan mb (SN-38 ), flavopiridol (MI), flavopiridol (M2), nalorphine, naltrexone, naringenin, fisetin, chrysin, apigenin, genistein, galagin, octylgallate, telmisartin, troglitazone, (30% et al), 1-naphthol, 4-nitrophenol.

http://72.14.203.104/search?q=cache:Qe61E6gOVR4J:www.kumj.com.np/past/Vol1/issue3/vol1_187.pdf+%22A+case+report+of+Gilbert+Syndrome.%22&hl=en&gl=us&ct=clnk&cd=1&client=firefox-a

Gilbert syndrome may be precipitated by dehydration, fasting menstrual periods or stress, such as an intercurrent illness or vigorous exercise.  Patients may complain of vague abdominal discomfort and general fatigue for which no cause is found.
 
For present complaint, child was shown to Ayurvedic doctor who advised restriction of diet including fatty meals. However, mother noticed  the deepening of jaundice in sclera without any abnormality in urine colour.