About me and suggestions for "alternative" help from other Weggies

[Carol]

I was diagnosed in May 2008 after a short but scary illness. I had joint pain that seemed to move to somewhere different each day, three different types of lesions, and generally feeling awful. I had chest X-rays which showed lesions on my lungs. I am now on Prednisolone and Imuran with a once a week calcium tablet – Fosamax and Somac daily to protect my gut. I am menopausal so the calcium issue is important for me. I have since had a bone density test and it was slightly low so this medication will bring it up. I am quite well but need rests in my day. Fortunately I do not work so can take time to get well. My biggest problem is my tingly feet and there’s a small area on my face which tingles. I recently had a “Carol is back on Deck” party on a Sunday arvo – everyone arrived with food – it was important to me for others to see me as operating in the real world again, although I have given up all my responsibilities such a Tennis Club secretary. I like to be achieving and doing things each day so am back at Toastmasters, Painting Classes, 4WDing etc.
What I am interested in is ‘ALTERNATIVE” things that have worked for Weggies. I have been researching the Neuropathy (tingling, burning, hot , cold) in my feet and keep coming up with the suggestions of Benfotiamine which is a lipid fat soluble form of B1 – its combined with Methylcobalamine B12. I have just rung a man in Australia who is taking it and he reckons that he has had about 60% improvement with it if he takes it consistently – regresses if he stops – he is very happy with the company he imports it from in the US – not available in Australia. I think I’ll give it a go as the Doc has no other suggestions than to wait and see. The company is www.realfoodnutrients.com
I meditate regularly and use the Twin Hearts Meditation CD – just put it on and listen. This CD is available from www.aiis.com.au . It uses the St Francis of Assisi prayer, does some omming, then brings down the white light to do healing of our body – it even works on our blood. This meditation is held publicly in 3 different venues in Lakes Entrance and is part of a large educational organisation in Australia and the world. I just love it and it has been invaluable to me in my healing.
I asked my local Health Shop lady (who has Lupus so has done a lot of research) thinking that maybe Olive Leaf extract would be good but she said no. What she highly recommends is Herb Robert (Geranium robertianum) Tea. This is pleasant tasting and I have just one cup a day. Available from Shipards Herb Farm 07 5441 1101 Australia.
Any other things that Weggies have found useful? I realise we all have to make our own mind up about anything “alternative” and that suggestions are only suggestions.

[andrew]

Hi Carol! Welcome and thanks for joining.

I must admit I haven't thought about alternative therapies for WG and would also be interested in your and other's thoughts on the subject.

Pre-diagnosis is certainly a scary time. I'm glad you got through it and are able to function pretty much normally. That party was a good idea!

Did you have any kidney involvement?

[andrew]

By the way, I'm in Canberra. Maybe if I'm down your way I can look you up? It'd be good to meet another Weggie in person

[Carol]

Hi Andrew,
You'd be very welcome to call in and meet me and my husband. We love entertaining - as you can see by one of my hobbies - food and wine - so let us know in advdance if you are travelling through. Canberra is not so far away - we go that way on our way to Sydney.
Our phone number is XX XXXX XXXX XXXX XXX XXX we are usually away each winter BUT not until mid August this year and then for about a month.

[andrew]

Thanks Carol! I've taken note of your numbers and will give you a call when I'm heading down you way :-)

[tarrer]

oh that you have give the site that is accept health challenge
thanks guys that you have gave a good information and admin also approved your post
thanks for it .