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canid
irregular meat sprocket




Registered: 02/26/02
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Loc: looking for zeebras, n. c...
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may have wilson's disease
#7900492 - 01/19/08 04:41 AM (16 years, 13 days ago) |
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i have come to suspect that i have wilson's disease and am experiencing symptoms of cirrhosis.
symptomatic wilson's disease is a life threatening genetic disorder which causes a deficiency in the metabolism of copper, and in effect, a bioaccumulation of the metal in the brain and liver. progression of liver damage once it presents is often rapid and chelation therapy takes weeks to months to be effective.
after experiencing several bouts of kidney and liver dysunction since my teens and many symptoms of neurologic dysfunction, such as periods of muscular incoordination, short term memory problems, muscular tremmor, etc i began looking into parkinson's disease and ALS.
in my research, i came across wilson's disease, which often causes Kayser-flischer rings; rings of dull copper around the periphery of the cornea. sounded familiar. i have these. it also causes what are called sunflower cataracts, which as far as i can tell from the limited results offered by google are copper colored rays or streaks radiating around the iris. i also have these. they are typicaly symptomatic of chronic copper toxicity, including that produced by this disorder.
i can't think of any ongoing or prolonged exposure to high levels of copper in my history.
i will be seeking medical advice and screening tomorrow. anybody have any other advice?
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Attn PWN hunters: If you should come across a bluing Psilocybe matching P. pellicolusa please smell it. If you detect a scent reminiscent of Anethole (anise) please preserve a specimen or two for study and please PM me.
Edited by canid (01/19/08 06:53 AM)
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canid
irregular meat sprocket




Registered: 02/26/02
Posts: 11,912
Loc: looking for zeebras, n. c...
Last seen: 20 days, 13 hours
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Re: wilson's disease [Re: canid]
#7900505 - 01/19/08 04:48 AM (16 years, 13 days ago) |
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i am not the type of person to self diagnose nor to form conclusions prematurely, so this is only an educated concern but since the ramafications could be life threatening, i plan to share my concerns with the physician and make sure they are evaluated.
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Attn PWN hunters: If you should come across a bluing Psilocybe matching P. pellicolusa please smell it. If you detect a scent reminiscent of Anethole (anise) please preserve a specimen or two for study and please PM me.
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CureCat
Strangest


Registered: 04/19/06
Posts: 14,058
Loc: clawing your furniture
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Re: wilson's disease [Re: canid]
#7904724 - 01/20/08 04:44 AM (16 years, 12 days ago) |
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Wow. Any word?? Or are you going Sunday?
I've read about the disorder in past research, but remember little about it. If you do have it, i hope you start right on the treatment. Apparently those afflicted with the disease are supposed to avoid mushrooms, which sucks. Though maybe it advises that due to the potential of mushrooms to concentrate metals, and that cultivated ones are fine. I hope the verdict is negative.
Please keep us informed!!
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AJ4U
Cloud N9ne



Registered: 09/06/06
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Re: wilson's disease [Re: CureCat]
#7904894 - 01/20/08 07:55 AM (16 years, 12 days ago) |
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My mother had wilson's disease or thats what they said when i was younger. They believed it was caused because of the chemo for cancer she had. She passed away soon after not sure really what caused it.
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CureCat
Strangest


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Re: wilson's disease [Re: AJ4U]
#7905660 - 01/20/08 12:48 PM (16 years, 12 days ago) |
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Quote:
AJ4U said: My mother had wilson's disease or thats what they said when i was younger. They believed it was caused because of the chemo for cancer she had. She passed away soon after not sure really what caused it.
They either didn't know what they were talking about, or didn't tell you what was up.
Wilsons Disease is not caused by chemo or cancer, it is a genetic disorder with a male predominance, that usually shows symptoms around the ages of 10-30.
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bodynotdead
TrichodermaCultivator



Registered: 05/10/07
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Re: wilson's disease [Re: CureCat]
#7910804 - 01/21/08 05:45 PM (16 years, 11 days ago) |
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I cannot emphasize enough the need for expert medical treatment for patients with Wilson's disease. The main herbal remedy I recommend for liver problems is milk thistle (Silybum marianum), which stimulates regeneration of liver cells and protects them from toxic injury.
You can find these products in health food stores under the names of milk thistle, silybum or Silymarin. I recommend Nature's Way brand of standardized milk thistle called "Thisilyn". Take two capsules two or three times a day and stay on it indefinitely.
-------------------- "absolute power corrupts absolutely". Lord Acton,
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CureCat
Strangest


Registered: 04/19/06
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I know milk thistle is a powerful medicine, but how do you know it works for those with Wilsons Disease??
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bodynotdead
TrichodermaCultivator



Registered: 05/10/07
Posts: 271
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Re: wilson's disease [Re: CureCat]
#7916410 - 01/22/08 06:59 PM (16 years, 10 days ago) |
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Wilson's disease is a disorder in which excessive amounts of copper accumulate in the liver or brain.
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CureCat
Strangest


Registered: 04/19/06
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Quote:
CureCat said: I know milk thistle is a powerful medicine, but how do you know it works for those with Wilsons Disease??
Quote:
bodynotdead said: Wilson's disease is a disorder in which excessive amounts of copper accumulate in the liver or brain.
....I know that. I didn't ask "what is Wilson's Disease?"
If you don't want to answer the question, that's cool. Otherwise, take another stab.
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bodynotdead
TrichodermaCultivator



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Re: wilson's disease [Re: CureCat]
#7920862 - 01/23/08 05:40 PM (16 years, 9 days ago) |
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Sorry CureCat Milk thistle is for the copper accumulation in the liver. It has a positive effect on it and is safe.
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CureCat
Strangest


Registered: 04/19/06
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It's fine, I'm just frustrated because my question has not been addressed.
I understand that you say milk thistle and its extracts can be used to treat copper toxicity to the liver, and I am aware that it is safe.
My question is, HOW do you know that milk thistle (and extracts) can be used to effectively treat toxic copper accumulation in the liver??
I know it has been used to protect and repair the liver from other toxins.
So, aside from your speculation, do you have any sources or other reason to believe that milk thistle or milk thistle extracts are effective in protecting or repairing the liver from the damaging effects of copper toxicity??
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Epigallo
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Re: wilson's disease [Re: canid]
#7925252 - 01/24/08 05:21 PM (16 years, 8 days ago) |
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I just started taking zinc for eczema, and read that you should be careful not to develop a copper deficiency because zinc inhibits the dietary absorption of copper. I did a quick search and found this website with information on treating wilson's disease with zinc.
http://www.peacehealth.org/kbase/cam/hn-1055001.htm
Are you on zinc supplements?
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bodynotdead
TrichodermaCultivator



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Re: wilson's disease [Re: CureCat]
#7926176 - 01/24/08 07:55 PM (16 years, 8 days ago) |
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No sources just speculation CureCat.
Once the accumulated copper has been removed, a drug called Galzin (zinc acetate) which blocks absorption of copper from the intestinal tract can be substituted. The major side effects of zinc acetate are temporary stomach pain or nausea.
Patients with Wilson's disease used to be warned not to eat a long list of foods containing even small amounts of copper. With today's treatments, the only foods considered off limits are shellfish and liver both of which contain high levels of the metal.
One's again I cannot emphasize enough the need for expert medical treatment.
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