GERMAN / DEUTSCHES Morbus Meulengracht Forum > Symptomlinderung und Hilfreiches
Habe das englische EZBoard durchgelesen, hier die IMHO wichtigsten Passagen
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Medizinmann99:
IMHO ist übrigens englisch und heißt "in my humble opinion", übersetzt meiner Meinung nach :)
Ich markiere die wesentlichen Bereiche einfach rot, sonstige Hinweise über die Einnahme etc. grün:
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Hi all
Just thought i should share with u something,which I find is an amazingly effective and cheap treatment. Ive been a sufferer of GS for about 10 years.
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.
I am not a medical professional.
hayesmoore
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I've been reading about the great effects some of you guys are having with St John's Wort for clearing yellow eyes. Just a few bits of warning about possible side effects from this herb......
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.
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Hi all,
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.
Works for me, hope it'll help some of you.
arotai
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I Have a theory that the same enzymes that must get rid of the billiruben, also breaks down the minerals into a format so that your body can absorb the minerals like Iron, Magnesium, etc. When you do not have enough Iron in your body, you become anemic. (not enough red blood cells). this is the cause of fatigue, muscle cramps, and having the inability to concentrate. These symptoms are caused by the fact that your blood (lack of red blood cells) does not have the ability to transport enough oxygen and fuel to your muscles and organs like the brain. The reverse is also true that the blood can not remove waste products fast enough specially when doing exercises from the muscles which in turn causes muscle cramps. A shortage of magnesium will have the same effect (Muscle cramps). What has been helping me back to a normal life is the daily use of LIV52 tablets (Manufactured by the Himalayan Drug Company in India- This herbal tablet consists of ground and compressed plant material) and the oral intake of iron as soon as my body tells me my Iron is getting low (About every 2nd month). The LIV52 tablets builds the liver and has saved the lives of thousands of people that contracted hepatitis A.
If you need more information, feel free to contact me.
Eugene du Plessis.
South Africa.
[email protected]
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Cooking removes around 80% of vitamins and minerals as well as digestive enzymes from food.
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Glutamine
Gilberts is meant to weaken the body.
"The more stress our body is under the more glutamine that is pulled away from the muscles. And guess what- working out puts a lot of stress on the muscles. Ironically, when we work out we are really putting our body into a catabolic state and losing the glutamine that is essential to protein synthesis (which is how muscles are built). Now, if we supplement our body with glutamine before an intense workout we allow our body to keep a high supply of glutamine in the muscles and stop the muscle catabolism. This means the body can use the glutamine in the muscles to synthesize protein and build muscle mass. In addition, because there is enough glutamine for the whole body - the other critical functions such as the immune system have enough glutamine to perform their necessary functions.
An interesting side note, for years high levels of glutamine have been used in Emergency Rooms for patients that have been involved in a high trauma accident. When a person is in a car accident, their body is put into a stressful situation and begins to enter a catabolic state. The muscles start to breakdown as the body quickly starts to pull glutamine from the muscles to deal with other more serious problems. Doctors have found that giving patients a high dosage of glutamine is very effective in preventing the muscle breakdown. To a much smaller scale the same theory holds true when you work out - if you keep a high level of free glutamine, your body will not need tor 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'll be taking all my information about gs and livatone to the stomach consultant as i believe that somewhere there is a link between the two and i don't think it should be ruled out so easily.
Hope this info helps someone out there with similar symptons as me.
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Hi
I must share a good news with you peers.
I’m from Poland and I have GS and hemolysis (intrinsic membrane defect of red cells) so I have higher bilirubin count then you - 6.4mg (120mmol).
I’ve tried everything possible to low down my bilirubin and be less yellow – at last a little bit.
My eyes were really yellow without a bit of white. It was very nasty when people suspect me to have hepatitis didn’t want give me a hand and look at me strangly. As a result I stoped to socialize and closed myself in my house. I hated mirrors.
It was pretty hard to find some medication that you talked about here (problem to translate into polish adequate names).I’ve never managed to translate and get the SAM - “S-adenosyl-methionine” (combine of amino acid methionine with adenosyl-triphosphate (ATP)).
Lets go to the point:
I tried milk thistle and dandelion root – helps only for my abdominal pain
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.
I’ve never wanted to try phenobarbital and glutethimide – it lower bilirubin but side effects are more harmful then yellow eyes. Tin-protoporphyrin is probably really good without side effects but I have problem to find sth adequate or medication with it in Poland.
What we (with GS) need to get rid of bilirubin is more glucuronic acid produced by liver or medication with it – I ‘ve got problem to find sth that consist it – if you find please let me know. I tried lots more staff but wrote only about that with good effects.
The only thin that really works is “Pollen”- I’m sorry it’s a polish name. It droped my bilirubin from 6.4 to 2.8 !!!
I tried to find translation for it but I failed. I try to explain to you what it is:
It is not medication but dietetic article of consumption, it is consist of flower pollen. The product is close related to Royal Jelly –(it didn’t work noticebly for me).
Let me know if it works for you.
Please visit www.emedicine.com/MED/topic870.htm - about GS
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What I've taken is Pollen - the name is the same what it means in English.
To make it clear:
"Pollen - male generative element of seed plant. The shape of seed depends
on plant species, what can tell us about pollen derivation.
Pollen chemical composition depends not only on plant, but also on soil
fertility which is basic soil for a plant, on humidity and atmospheric
conditions during formulation and maturing of anthers. Pollen is obtain in a
pollen load form using special pollen traps, which are installed in hive
entrance.
Pollen content:
Chemical compound in % of different plant species.
Carbohydrates of pollen in 97% contain glucose, fructose, 3% residual are
vitamins, organic acids and amino acids. From 24 known amino acids in pollen
detected 20 of them. Floral pollen contains 36 bio-elements, which are
important ingredients of organism and which takes active role in it's
processes, for example Ca, Fe, Mg, Si, S, Cu, Br, Sr, Zn, Cr and others.
Average content of vitamins in floral pollen mixture.
Studies on pollen properties showed that it can be used in diabetics very
rich in vitamins, microelements and easy digestible protein resource. It
contain also some biological active agents. Consuming pollen in not large
amount is a good foodstuff, which improves good frame of mind and increases
body weight. Besides regulates intestines function in inflammation, helpful
during diarrhoea and obstruction. Pollen proofs clearly intellectually, what
is concerning with better blood supply. Pollen treatment gives positive
results in prostate gland inflammation. Antibiotics contain in pollen brakes
bacteria develop, particularly from Salmonella group, which are very
difficult to feight with another pharmaceutical preparations. "
Please visit the site of producer: www.apipol.com.pl/ang
-this is in English.
You can also order it (business info)-the price is aprox. 3 $ per packet (60
tablets).
Please let me know if you find any good article on internet on the pollen.
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I found glutamine supplements (tablets) help - they encourage glutathione production in your liver and thus help the phase 2 liver cleansing process.
Also Alpha Lipoic Acid seems to help...and this has the added benefit of delaying the ageing process...if the recent studies on rats are to be believed!!
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Medizinmann99:
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Marianne
Registered User
Posts: 1
(5/21/03 4:39)
Reply within 2 hours Ifelt much better 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.
Can anybody trie it and tell me if it's working on them two. The result should be fast enough.
excuse my English it is not my first language.
rainbowwarrior
Registered User
Posts: 6
(5/21/03 8:10)
Reply anaemia Hi Marianne,
I know people with anaemia drink white nettle leaf tea. I haven't tried it yet, but maybe I will. Thanks for your advice!
regards,
Lotus
Marianne
Registered User
Posts: 2
(5/21/03 17:52)
Reply Re: anaemia All I know is that the symptom (fatigue, nausea, dizzinness, yellow face) are gone. Since a couple of week I also take flower pollen in the morning and it makes it better. Sometimes when I don't drink the herbal thea I just take the pollen and it seems allrigth. Lately I also stop alcohol and sugar completely. It's improving the situation but I guess it is not everybody who is ready to say Bye bye to those two!!!
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Brocolli - its very good for you in general, but I think something in it does the trick.
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hayesmoore
Registered User
Posts: 14
(9/7/03 9:07)
Reply Artichoke & Sarsaparilla Hi Guys
I have introduced meembers of this forum to St Johns Wort (SJW) and it appears to have stimulated quite a bit of discussion. Some of you have found this popular herb to be beneficial (presumably because of its induction of Uridine Diphosphate Glucoronosyltransfearase) however, som e of you have not had quite so much luck with it.
Well for those who have not found St Johns Wort helpful, and perhaps thosewho have, 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 gerbshave been used for a long time to treat patients of liver disease. They some how regenerate and protect the liver and help the flow of bilirubin. I do not really understand these herbs as well as i do SJW (i do not really understand that in much detail either) but I have come across a webpage detailing a few studies that have been done using these herbs on liver disease patients.
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 do nt 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). I have only used it for one day so I am unable to report anything yet. In addition I am also using Ginkgo Biloba. I am only using this herb for my studying really and also to releive my asthma-I do not know if this herb affects GS or not..
So guys check out the webpage and see what you think. Apparently there are virtually no side effects of these herbs and are considered v safe. The studies reported here seem to indicate quite a large benefit to GS suferers. Indeed some places I think actualy might reccomend this herb to GS sufferers.
Good luck with it.
Hayesmoore
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hayesmoore
Registered User
Posts: 15
(9/11/03 11:41 am)
Reply Artichoke & Sarsaparilla really seems to be working!!! Hello again
Well 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.
Because in addition to GS, I have asthma, I have also been using Ginkgo Biloba (2 x 250 mg (tablet)/day from Holland and Barrett). GB inhibits Platelet Activating Factor, which is necessary for an asthmatic attack and allergic reactions. So if any of you who have asthma then I reccomend this herb as well. I have used it for about 5 days now and have seen dramatic improvement such that I need to use my inhaler just once per day at most.
In theory, my improvement in GS should be attributed to the Sarsaparilla and Artichoke, but because I am also using Ginkgo Biloba then I cannot make that conclusion definite.
Try this mixture of herbs. 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. This has taken just 3 days so far and amazing improvement is apparent.
Try it and get back to me!
hayesmoore
Matthew2002
Registered User
Posts: 50
(9/15/03 15:39)
Reply I just ordered... I just ordered both!
Heres to it!!!!
StevieRay2
GWMB Registered User
Posts: 20
(10/10/03 21:16)
Reply TMG, artichoke and sarsaparilla Okay, so I've been taking relatively high daily doses of TMG, artichoke and sarsaparilla for the past 5 or 6 weeks. The result is: Mild improvement in eye color but nothing earth-shattering. My eyes are still somewhat yellow.
I will continue the experiment but have doubts that I am going to find anything that completely eliminates the yellow.
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http://www.seasilver.com/
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Medizinmann99:
Zusammengefasst also die Tips vom englischen Board:
* St. Johns Wort
* hohe Dosen Glutamin, Glycin und NAC (oder Cystein)
* LIV52 Tabletten aus Indien / Eisentabletten
* 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.
* Tin-protoporphyrin (?)
* "more stuff that consists of glucuronic acid"
* Pollen
* Alpha Lipoic Acid
* natural herbal tea named "white nettle leaf"
* Brokkoli
* 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
* ein Produkt namens "Sea Silver" -- http://www.seasilver.com/
Mehr habe ich im englischen Board betreffend positiver empirischer Erfahrungen mit verschiedenen Nahrungsergänzungsmitteln usw. nicht finden können.
Hier was zu St. Johns Wort:
http://de.wikipedia.org/wiki/Hypericum_perforatum
http://en.wikipedia.org/wiki/St_Johns_Wort
Das ist also Johanniskraut.
Das Aminopräparat könnte wirklich was sein für MMler, man muß sich mal die Dosen ansehen wieviel da von was drin sind und den Preis.
Dieser White nettle leaf Tee heißt "Weiße Taubnessel" übersetzt.
Interessant wäre auch die Pollengeschichte.
Zum anderen Zeug muß ich noch nachforschen...
Medizinmann99:
Heute habe ich im "wiederauferstandenen" EZ Board (bis auf die BEiträge, die durch irgendwelche Datenbankfehler dort verschwanden ROFL) dies hier gefunden:
http://p075.ezboard.com/fgilbertswebfrm3.showMessage?topicID=204.topic
(ich habe jetzt 10 x oder so versucht es hier reinzukopieren irgendetwas!!! ROOOOOFL ganz wurscht was ich versuche ist in diesem EZBoard was es mir verunmöglicht das hier herinzukopieren, tue ich es doch schneidet er mir das Posting hier wie mit Zufallsgenerator in der Mitte auseinander, echt unglaublich, das muß irgendwelcher Steuercode sein, obwohl das eigentlich unmöglich ist, da ich alles auf NurText getrimmt habe...)
Kurz, die Wissenschaftsfritzen glauben daß viele MMler unter einer Art Magenparalyse leiden, ebenso sei bei MM Schilddrüsenunterfunktion häufig. Letzteres würde ich ohnehin jedem MMler empfehlen abklären zu lassen (aufpassen nicht den "Spartest" der kranken Kasse machen lassen, sondern auf einem "vollwertigen" Schilddrüsentest (Bluttest) bestehen).
Ich persönlich bin nach meinem Empfinden (d.h. subjektiv) nicht von dieser Sache mit der Magenparalyse betroffen, vielleicht irre ich mich aber auch. Nach den Schilderungen die andere von Euch hier gebracht haben betreffend ihrer Symptome scheinen andere aber sehr wohl merklich von so etwas betroffen zu sein.
Dann denke ich mir wäre es für Euch interessant, einmal dieses "Domperidone" (wahrscheinlich heißt es bei uns hier anderes!) zu versuchen, wohlgemerkt aber verschreibungspflichtig!
Und wie alle verschreibungspflichtigen MEdikamente hat auch das mit Sicherheit ggf. gravierende NEbenwirkungen. Es ist halt eine Frage der Kosten/Nutzenrelation...ich denke auf alle Fälle wer glaubt von dieser o.a. Sache betroffen zu sein sollte das mal testhalber versuchen! :-)
Liebe Grüße
Medizinmann99
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