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#20130 - 12/04/00 07:33 PM Dorfman-Chanarin Syndrome
sonia Offline

Member

Registered: 08/22/00
Posts: 77
Loc: United Kingdom
Those of you who have LI may want to check out this link: http://www.ncbi.nlm.nih.gov/entrez/query...p;dopt=Abstract

In layman's terms it means that the liver cannot store lipids and hence the fats will be found in vacuoles in the blood cells. Aiesha had blood tests earlier this Jan 2000 and they found that there was a problem with the enzyme counts (too high) in the liver. First of all the doctors made me take her off noni saying that was the cause (turns out they were wrong because they were uninformed about how the product works). Then they accused my of overdosing her on vitamins (wrong again) and the tests keep coming back the same. Anyway, I did some research and found out about Dorfman-Chanarin and asked the hospital to test - they said no it couldn't possibly be that and carried on testing for hepatitis (of which Aiesha never had any symptoms). Finally, they tested for D-C and came back with a positive test. Now they are saying that they are convinced the vacuoles in the white blood cells contain fat but cannot actually prove it. Meanwhile, I have been in touch with Dr Andreas Wollenberg who has informed me that this problem occurs mainly in people of Asian origins (which we are) and there is no cure (which I also know) but the condition can be improved considerably by diet. However, my hospital will not let me see a dietician until D-C is proved and Aiesha has seen a liver specialist. D-C can also be proved by a simple skin bioppsy which is what Wollenbery recommends for all ich patients. While I don't want to scaremonger, I think that if you can, you should get this test done. There are only 23 recorded cases in the world (Aiesha makes 24) but I suspect there are more since it it not something done in a standard blood test. Meanwhile, Aiesha has seen a kinesiologist who detected a major problem with the liver and balanced the organ using homeopathic remedies. While there has not been a change in the skin, Aiesha is due for another blood test which should be very interesting since her liver has now been detoxed and drained. Watch this space.....


Sonia.

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#20131 - 12/05/00 08:01 PM Re: Dorfman-Chanarin Syndrome
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
It's interesting that this is basically a liver disorder (not trying to downplay this, just narrowing it to a category), and this is not the first time we have heard of Ichthyosis being associated with liver problems.
I have a book that mentions a man who twice "acquired" Ichthyosis late in life, and each time it was associated with a tumor on his liver. In both instances, when the tumor was removed, the Ichthyosis vanished.
The liver is a trickier organ than I had imagined...

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