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I have been advised by well meaning folk that a product called XXX, which I believe is a combination of Manuka Honey, ginger & bee stings is linked to assisting symptoms of Lupus - has anyone ever taken/knows of anyone who has taken this and was it of any help? Were there any side effects?:
 

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No, I have not and I would not take it because I am very allergic to bees.:eek:
I stick to the tradtional medicine-so I am of no help sorry:(



Becca:)
 

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Hello

I haven't taken it because I don't go in for supplements. Also I luckily have no "well intentioned " people around me ! We all know what the road to **** is paved with.

I looked up this product: it says don't take it if you have allergies/a serious allergy to bee stings, or on beta blockers or ace inhibitors, or on non steroid anti inflammatories, NSAIDs.
The ginger is a well known anti-inflammatory and is said to thin the blood. This might not do any harm but that's a very individual question. The bee venom and honey are thought by some people to have beneficial qualities of various sorts but I don't do bee products and dont want to risk allergic reactions. It seems mainly to be about the arthritis side of lupus but there's a phrase in the advertising about 'enhancing the immune system' whatever that means. If it really does enhance the immune system we don't need it because that would increase disease activity too

It's very possible that dietary and life style changes will do far more good than buying a product. Things like cutting out refined sugar and all animal fats for example.
There are several threads about how to deal with the well intentioned on Living with Lupus section and also Family and Friends with a couple of 'letters' advising how to deal with lupus. One of them has a bit about "please don't suggest remedies or alternative therapies because ..." , and "Thanks for your suggestions I'll ask my doctor about it "

People tend to think that because a product is natural it must be harmless.

Take care ! :)

Clare
 
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