A well meaning friend gave me a number for a Chinese Herbalist doctor whom she says has 'sorted out' her uncle who had ME. She says i shoudl go and give it a try - am a bit apprehensive, but don't want to offend her as my attendance out is a bit thin presently due to all of my fatigue. Will anything 'sort out' the fatigue?? another friend suggested a life coach (which i laughed at) and says its all positive thinking etc - Don't want to be ungrateful - but they just don't get it - Do they???
Chinese Herbal Medicine???
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Alison, all I have to say is 'positive thinking is good' - just don't need to pay for it!
Take care,
Love Lesley
Take care,
Love Lesley
I would be a little wary as it often takes us a while to get our medications balanced and I would hate to unbalance them. If you must take extra medicines please inform your Docs. I know it is tempting, my Daughter wishes to try it too.
As for a Life Coach, you probably cope extremely well with what life has thrown at you. Bet your friends could not do it better. Please don't let yourself be undermined at all.
x Lola
As for a Life Coach, you probably cope extremely well with what life has thrown at you. Bet your friends could not do it better. Please don't let yourself be undermined at all.
x Lola
I tried chinese medicine a few years ago.All I can say is that it made me feel worse and was very expensive.I had to take bags of herbs home and boil them up,then drink it.It tasted like extremely strong liqourice.When my partner said I was overeacting when I drank it and that it couldn't be that bad,I made him drink some and he heaved too 
:hehe:
I have to say though,I have tried acupuncture and all but with one therapist I had beneficial effects,
Julsie
:hehe:I have to say though,I have tried acupuncture and all but with one therapist I had beneficial effects,
Julsie
Hi Alison,
I would be very careful as although someone with ME will also suffer fatigue they don't have to be as cautious with their immune system. the chinese herbalist may not fully understand lupus and the impact of maybe giving you something to stimulate your immune system. The herbs may also interact with any medication you are taking.
The fatigue is one of the hardest things to deal with and unfortunatley there is no miracle cure for it. Some people find that changing their diet helps a little.
It is hard when people don't understand and I do get very frustrated at times. Then again why would they understand unless we help them. I'm sure I must have suggested things to people over the years without full awareness of their condition.
I would tell your friend that you really appreciate her advice and explain that ME is very different from lupus and some herbs could be potentially serious for you.
Hang in there :hug:
Pam xxx
I would be very careful as although someone with ME will also suffer fatigue they don't have to be as cautious with their immune system. the chinese herbalist may not fully understand lupus and the impact of maybe giving you something to stimulate your immune system. The herbs may also interact with any medication you are taking.
The fatigue is one of the hardest things to deal with and unfortunatley there is no miracle cure for it. Some people find that changing their diet helps a little.
It is hard when people don't understand and I do get very frustrated at times. Then again why would they understand unless we help them. I'm sure I must have suggested things to people over the years without full awareness of their condition.
I would tell your friend that you really appreciate her advice and explain that ME is very different from lupus and some herbs could be potentially serious for you.
Hang in there :hug:
Pam xxx
Hi alison
I was reading back through your posts and there wasn't any mention of you starting any other meds besides the Prednisone, is that still the case?
If so then it's worth seeing a Rheumatologist (rather than your Dermy) to ask about trying Plaquenil. By the sounds of your rash you had a Sub-Acute Cutaneous one and whilst the rash is a prominent feature, no doubt by now you've realised the fatigue and joint pain are pretty much a feature too. This type of Lupus has the potential to wreak some havoc if untreated and most docs would start you on Plaquenil. That would go a long way to sorting out the fatigue and joint pain and giving you less flares and certainly less severity when you do flare. It's also an insurance policy against worsening disease.
It can in some patients cause a problem if they have psoriasis (which you mentioned you had) but not in all. I'm wondering if your Dermy has totally dismissed the idea because of that. You will never know until you try, you might be fine with it. If not there are other things you could try.
It's important to be on some disease modifying medication and certainly more preferable to long term Pred which most patients don't take these days unless they really have no choice.
I'd be very wary of the Chinese herbalist, for several reasons:
a) if they aren't familiar with Lupus they may think that 'boosting your immune system' is a good idea and it's the very last thing we want...........we are pretty well boosted and you don't want to make things worse.
b) some not so reputable ones have been known to use all manner of things in their concoctions..........there was a court case here some years ago where one was putting Pred with his medications...........no wonder his patients improved! It was the Pred helping them, nothing to do with any of his wonderful chinese herbs He's been barred from practising for obvious reasons
Good luck and I really think if you speak to your GP about a Rheumy referral you will benefit from that if you haven't already seen one.
Don't worry about your 'well meaning' 'friends' they have no idea what this is like and what they can't see they have trouble understanding. There's probably not one of us here who hasn't had some kind of bizarre cure-all spouted by friends and relatives. As time goes by they realise that Lupus is here to stay and the best treatment for it is adjustments to lifestyle, the right meds and a knowledgeable and caring doc. A big dose of loving and supportive friends and family helps a lot too!
love
Lily
I was reading back through your posts and there wasn't any mention of you starting any other meds besides the Prednisone, is that still the case?
If so then it's worth seeing a Rheumatologist (rather than your Dermy) to ask about trying Plaquenil. By the sounds of your rash you had a Sub-Acute Cutaneous one and whilst the rash is a prominent feature, no doubt by now you've realised the fatigue and joint pain are pretty much a feature too. This type of Lupus has the potential to wreak some havoc if untreated and most docs would start you on Plaquenil. That would go a long way to sorting out the fatigue and joint pain and giving you less flares and certainly less severity when you do flare. It's also an insurance policy against worsening disease.
It can in some patients cause a problem if they have psoriasis (which you mentioned you had) but not in all. I'm wondering if your Dermy has totally dismissed the idea because of that. You will never know until you try, you might be fine with it. If not there are other things you could try.
It's important to be on some disease modifying medication and certainly more preferable to long term Pred which most patients don't take these days unless they really have no choice.
I'd be very wary of the Chinese herbalist, for several reasons:
a) if they aren't familiar with Lupus they may think that 'boosting your immune system' is a good idea and it's the very last thing we want...........we are pretty well boosted and you don't want to make things worse.
b) some not so reputable ones have been known to use all manner of things in their concoctions..........there was a court case here some years ago where one was putting Pred with his medications...........no wonder his patients improved! It was the Pred helping them, nothing to do with any of his wonderful chinese herbs
He's been barred from practising for obvious reasons Good luck and I really think if you speak to your GP about a Rheumy referral you will benefit from that if you haven't already seen one.
Don't worry about your 'well meaning' 'friends' they have no idea what this is like and what they can't see they have trouble understanding. There's probably not one of us here who hasn't had some kind of bizarre cure-all spouted by friends and relatives. As time goes by they realise that Lupus is here to stay and the best treatment for it is adjustments to lifestyle, the right meds and a knowledgeable and caring doc. A big dose of loving and supportive friends and family helps a lot too!
love
Lily
Thanks very much for all your thoughts, it's pretty much what i thought- but needed someone else to tell me. Lily - i've been on Plaquenil for 4 years now - started me on that when i just had sore joints - oh those were the days :lol: I've got both a rhemy and dermy looking at me - with an extremely helpful lupus nurse, so i feel as if i'm on the right track. Still having to work out what is too much for me to do, but that takes time. It's great having people here to ask for advice, in additions to a loving (and very concerned) family!!!
alison x
alison x
I have Chinese herbal docs
on my client list (I am a glorified accountant). They state LOUDLY make sure that the herbalist understands exactly what Lupus is for if they don't you will not get correct help. Some of their potions may help, of course what helps one may not help another.
Mine is frantically studying up his literature to see what he can supply to stop me getting pneumonia, he says trouble is most of the literature boosts the immune system which is not suitable for us.
I have had the anti pneumonia injection, which does not stop the pneumonia attacks but just maybe will stop the fevers of 40 which I am prone to, which causes further problems. The injection should stop the worst of the flare ups of pneumonia for 2 years, then it will start again.
on my client list (I am a glorified accountant). They state LOUDLY make sure that the herbalist understands exactly what Lupus is for if they don't you will not get correct help. Some of their potions may help, of course what helps one may not help another.
Mine is frantically studying up his literature to see what he can supply to stop me getting pneumonia, he says trouble is most of the literature boosts the immune system which is not suitable for us.
I have had the anti pneumonia injection, which does not stop the pneumonia attacks but just maybe will stop the fevers of 40 which I am prone to, which causes further problems. The injection should stop the worst of the flare ups of pneumonia for 2 years, then it will start again.
I have been watching on TV about those Kinocki Pads
I have been watching TV about those Knochi Foot Pads that are supposed to be Japanese remedy for removing toxins out of the body. Been debating on getting them It shows the person with a brown dirty stained pad after they remove it off there foot the next day. Hmmm! Mine would probably look black ads tar! LOL! :lol: My husband drinks that herbal green tea stuff and I gag everytime I taste it. So it might work for one but not the other. Still want to try to food pads out though and see just how black I get the pads! :hehe:
I have been watching TV about those Knochi Foot Pads that are supposed to be Japanese remedy for removing toxins out of the body. Been debating on getting them It shows the person with a brown dirty stained pad after they remove it off there foot the next day. Hmmm! Mine would probably look black ads tar! LOL! :lol: My husband drinks that herbal green tea stuff and I gag everytime I taste it. So it might work for one but not the other. Still want to try to food pads out though and see just how black I get the pads! :hehe:
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