RE: Re: 's Disease

[Guest guest]

i believe alpha lipoic acid will help remove excess metals from the

liver....

patti

" nothing is so strong as gentleness and nothing is so gentle as real

strength "

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>Reply-To:

>To:

>Subject: Re: 's Disease

>Date: Mon, 05 Feb 2007 23:01:03 -0000

>

> > I think it's important to recognize that PSC is associated with

>copper accumulation, much as in 's disease:

>

>My son's dr didn't even mention this! He just said " it looks like

>Wyatt has 's disease, too " , then went on to explain about the

>copper, discuss the next copper level test, and referred us to his

>Dietician for the low/no copper diet. I haven't found much in my own

>research yet (basic single, two page websites for info, plus posting

>here). Thank you, for this information. I'm calling my son's

>dr back to ask why he thinks copper in the liver means 's.

>

> > suggested abnormal hepatic copper metabolism in this

>disease...Virtually all patients had at least one abnormal copper

>test. In advanced histologic stages of primary sclerosing

>cholangitis, progressively higher mean levels of hepatic and urinary

>copper were found. In the liver, mean copper content (in micrograms

>per gram dry weight) in disease stages I and II was 147 +/- 36 (mean

>+/- SE); in stage III (fibrosis), 302 +/- 68; and in stage IV

>(cirrhosis), 379 +/- 69. In the urine, mean copper excretion (in

>micrograms per 24 h) in stages I and II was 72 +/- 14 (mean +/- SE);

>in stage III, 100 +/- 14; and in stage IV, 207 +/- 30.

>

>Where do you find such wonderfully detailed information (and so

>quickly, too)? You are amazing.

>

> > Higher hepatic and urinary copper levels at initial evaluation were

>associated with decreased survival during a median follow-up period

>of 2.6 yr: patients with hepatic copper greater than 250micrograms/g

>dry wt and urinary copper excretion greater than 200 micrograms/24 h

>at initial evaluation had an 18-mo survival of less than 60%.

>

>My son is stage 1, so even if his copper levels are high, this

>wouldn't apply to him, correct?

>

> >We conclude that abnormal copper metabolism is a universal feature

>of primary sclerosing cholangitis, that hepatic copper accumulates

>and urinary copper excretion increases as the disease progresses, and

>that the hepatic copper concentration and the 24-h urinary copper

>determination are useful prognostic indicators in this disease.

> > So a high hepatic or urinary copper level does not necessarily

>mean " 's disease " .

>

>This makes me question how much my son's dr really knows about PSC.

>Again, thank you.

>

> > Strictly, 's disease is caused by a mutation in a gene

>encoding the copper-transport protein, ATP7B.

>

>From what I have researched so far (which isn't too much yet), it

>takes two carrier parents to get 's.

>Is there benefit to following the low copper diet for elevated copper

>levels due to PSC or is it only beneficial when you have 's?

>--Meghan, mom to Wyatt (PSC & UC 1/07: FAP 8/01: ?'s -I'm full

>of doubt over)

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