Thanks again for everyone who responded to my first posting! :) It meant a lot.
Tomorrow I'm going to my first Liver Doc appointment, I'm really nervous and feel like just telling him to give me those friggin meds already, but I know I have to go through the formal process of diagnosis. Still have to do the biopsy and such.
After reading some info out on the web, I found out that from a natural approach, it's not just Zinc that can speed up excretion, but two other things as well. Vitamin E, and a mineral called Molybdenum. Coincidentally enough, Molybdenum is one of the foundations that inside that new WD drug Tetrathiomolybdate they're studying up at University of Michigan.
I also had a few email exchanges with Dr. Askari up at U of Michigan who was involved with the clinical trials of Tetrathiomolybdate and not so good news. First he mentioned they're no longer taking people into the all-inclusive trial program for the drug, and second- the Tetrathiomolybdate drug will not be FDA approved anytime in the near future.
So I'm going to order some Molybdenum from iherb.com where I usual get all my herbal supplements as a co-therapy to Zinc. I'm also going to start on Vitamin E 400iu and interestingly enough learned that not all Vitamin E is created equal. Anyone who's considering Vit E for Wilson's should only look at the "Complex" form of Vit E. The smaller constituants of Vit E are called Tocopherols and a good Vit E supplement will not only have one or two, but actually a complete 4-5 family of tocopherols making the final Vit E product. But in general, the Vit E chelates with Copper in a very different way than Zinc or Molybdenum. Specifically neutralizing it as a free radical, where Zinc blocks it from absorbing and Molybdenum "hooks" onto it so it can be excreted easier.
Don't get me wrong, I'm going to be all about the Syprine as the main form of therapy, but whenever you can integrate natural things like vitamins / minerals to help the process, the therapy is more comprehensive, so long as no one is overdosing on any vitamins/minerals.
Last thing, I really got freaked out this weekend because I started getting really sharp stabbing pains over my liver, and the lower back area of the kidneys feels really stiff like I worked it out at the gym when in reality I've done nothing to it? Anyone have these anomalies with the liver/kidneys? I REALLY hope the damage isn't permanent. :(
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Going to my first Hepatology appointment tomorrow
- By ronen
- Posted October 19, 2008 at 10:49 pm · 2 replies
- In Newly diagnosed
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Explore topics in this discussion:
Arthritis Rheumatoid arthritis Tetrathiomolybdate Syprine Penicillamine
2 replies
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- Newest first
- By Rose5
- Posted October 20, 2008 at 7:10 am
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Hi Ronen
Good luck with your hepatology appointment :)
Be careful what you mix and match
Let us know how you go
Rose
x
- By GabsMom
- Posted October 21, 2008 at 1:44 pm
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Hi Ronen,
Hang in there with your Doctors. Tell them everything you take, bring the bottles to them. Are you in AU? The problem with many over the counter meds here in the USA is that there are no mandated standards. Try to use only vitamins that have the GMP (Good Manufacturing Practice Regulations). That way you are pretty sure the item contains the real deal.
I am following your posts carefully because your case parallels what has been happening with my dog Gabby. In August 2008, she developed neurological problems, cried when we touched her at about 7 years of age. We thought it was Rheumatoid Arthritis (RA) bur after many tests and a liver biopsy we found she had 5-6X elevation of both iron and copper in the liver. The vet says it is the Dog version of liver disease. We decided to model her treatment plan on that of human patients with Wilsons. We gave all the drugs to her (enulose, denamarin, Vit E, penicillamine, antibiotics) and changed her diet to special no copper liver diet dog food. It made her so sick, she stopped eating.
We had to stop everything, get her eating again, and now we are slowly adding the drugs back, one a week. We start the penicillamine next week. My vet and I are worried because Gabby has the elevated iron as well as copper in the liver. Let us know if you have the elevated iron in the liver. We want to know if there is something else we should try on Gabby for chelating the elevated iron.
Hope you get well. It is a long road to fix a liver. Ask you doctor about the human equilavent of Denamarin (SAMe and milk thistle). My vet tell me it supports liver repair. It should work for humans as well.
Regards,
Gabs Mom
Denamarin contains SAMe which markedly increases liver glutathione levels, a potent antioxidant. SAMe also helps protect liver cells from cell death and may help cell repair and regeneration. Denamarin also has Silybin, is the most active part of an extract from milk thistle.
* Silybin acts as an antioxidant
* Silybin also stimulates the flow of bile through the liver to aid in the digestion and absorption of nutrients from your pet's diet
* Silybin also helps with liver cell regeneration and may enhance levels of glutathione, the liver's major "detoxifying" agent
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