Cures and remedies vrai o? faux

[Mick 2525]

I am a 24 year old guy, found that I had lupus 5 years ago. Really in the minority a guy with lupus, lucky me!! I have had quite bad rashes on my face that come and go. Really does hit your confidence I must say. Used to be a complete optimist more of a realist now but a shimmer of optimism still remains ;) . I should cut to the chase. I have two queries. Has anybody had any good results from changing diet, giving special attention to cleansing, moisturising, exfoiliating etc. {remember guy here, not used to all that} or anything else? Has anyone been sucked into trying any internet things with promises bla bla.....excuse my sceptism. Just been on a site that actually targets people with Lupus which I found a little wierd. I know there are alot of mean nasty so and so's out there but feedback would be nice as that optisist in me might lead me to part with my money.

[Lily]

:lol: Sorry I will endeavour to control myself here. This is exactly the type of scam we avoid like the plague. Until you hand over the money you dont even know what his supposed cure is ;) Beware of charlatons (sp?) eager to make a quick buck and get you to part with your money. If there was a 'magic cure' believe me the 10,000 or so members on this site or their doctors would have discovered it by now :D Stick to the facts, read all you can and arm yourself with knowledge, its our best asset in living well with this disease.

I've had to remove the link btw because its advertising and promotion of a product something which is against site rules for obvious reasons. You could imagine we are prime targets for people touting miracle cures and we dont want to appear to be endorsing their beliefs or lining their pockets.

If you do a search on rashes and also look in our looking good feeling better section you will turn up lots of past threads on the subject and hopefully some helpful hints.

Are you currently on any meds for your Lupus? Usually if the disease is under reasonable control the rashes settle down. New or worsening rashes can signal an increase in disease activity, as can exposure to sunlight.

Glad you found us and I hope you find the site informative and supportive.

love
Lily

[canoe]

Hi Mick, Could you tell me a little more about your rash. Do you have discoid or Sle lupus?Is the rash in the classic butterfly shape?Have you seen a dermy to determine exactly what type of rash it is?Are you on any meds.? Have you noticed any one thing that helps or makes it worse?I had the classic butterfly rash for 10 years. One of the worst I've ever seen.I tried everything.but nothing really made a difference.Of course it was worse when I was tired or flaring.Today, I have no trace whatsoever of the rash.The last Dr. I saw about a month ago got about an inch away from my face and said,"Are you sure you have lupus, I don't see anything at all."The product I purchased cost me 10 dollars and the rash started to go away immediately and was totally gone in 2 weeks. That was over a year ago and it has never come back.I will be happy to send it to you for free.It isn't a drug and there are no side effects.There don't market it for lupus and other than me calling them and thanking them for such a wonderful product and telling them how it helped me I don't think they're aware that it has such an amazing effect.I'ts not supposed to be a miracle cure it just happens to work wonders for the lupus rash.Love,Canoe

[Mick 2525]

Hey Canoe. Thanks for you speady reply it was a kind of post and fingers crossed thing. I have discloid and the rash is a butterfly rash, pretty name but don't look to pretty. God don't ya hate irony. I have been to a dermie not for awhile tho. Was a bit disappointed with her last time she didn't give me any tips. Didn't seem to know a whole lot about it really I don't know. Not on any meds at the mo. The only thing I could notice might be beer, that could be the sober light of day ;) Haven't noticed a thing that will make it better. Obviously I use sunscreen all the time. It seems to come and go for no particular reason on my cheeks but my nose has a constant rash. I would suck up any advise you have Canoe and I really appreciate you taking the time to write your message. Mick

[Mick 2525]

Hey Lily,

Thanks for that sober thought I did think it looked very dodgy. I tried to contact one of his testimonials but no response. I do apologise for putting the link there probably a bit stupid really. My bad.

Thanks again, Mick.

[Lily]

No worries Mick, I realise you probably werent aware of site rules and were just seeking some solutions. Do you have other symptoms Mick besides your rash, have you been checked out thoroughly and have regular checkups? Lupus can be a sneaky disease and the rash usually represents uncontrolled disease - so there could be other stuff going on such as undetected kidney problems which carry few obvious symptoms until advanced. Something like Plaquenil is usually standard treatment these days and helps settle the immune system down, its unusual for a doctor not to start you on that once they have confirmed Lupus.

Canoe, would you like to share what has worked for your facial rash please? Rather than liase off board with Mick and offering to supply him with something free, others may be interested also and can relay their experiences.

love
Lily

[jude mack]

Hey Mick

Sorry about the rash, I don't find much helps, other than cortisone creams
which you really don't want to use all the time, as they can thin the skin.

Canoe I would really like to know what you are useing as well !!!!

Take care Jude

[canoe]

Hi guys,
I must say that I hesitated in answering Mick's post.I have seen other posts and concerns about the rash but held back.Why?Two reasons.A ten year search led not only to finding the cause of the rash but also resolutions of other lupus symptoms such as mouth sores and ulcers.They seem to be very much connected.As you can imagine I believe this is truly remarkable.The symtom resolution did not come from the medical community.It came from someone who truly understood this disease.Only a person who lives with lupus can "know" lupus.And only someone who suffers with lupus can be as determined to find answers.I have taken a very different path from almost everyone on this site.And because of that I have felt at times that I needed to hold back.More than once when I have offered help,my posts have been removed.That is one reason I thought it best to speak to Mick privately.I have been blessed. I know that. And the way I give back is to help others.I purchase everything that is needed for each person and never charge them for a single thing.That I'm sure is hard for some to understand. And because we live in a very jaded world I am also sure there will be those who say it is too good to be true and therefore not true.I also did not want to trivialize what this means.To post a cure for lupus symtoms in response to a question from someone might not be the ideal way to proceed. About fifty percent of us with lupus will develop the rash. I believe that to understand the cause of the rash may help to uncover the cause and cure for lupus.Again,this may not be the best place to begin. I hold something quite precious and you I'm sure understand why I think it best to proceed carefully.I don't mean precious in a monetary way.I am open to ideas and I am an open book with nothing to hide.Love,Canoe

[Scarlet Wolf]

Gee, Canoe,

I must say I'm very impressed with the claims for your product/protocol. I would wager that Pfizer, Roche, Merck, Glaxo Smith Kline, etc. would make you a very wealthy person if you would disclose your secret to them as well.

Please, do tell, share your "cure" with those of us less fortunate than you. Those of us long suffering with rashes would appreciate some relief.

Sincerely,
Scarlet wolf

[Mick 2525]

Hey Guys,

Thanks fo rall the kind words and support. Canoe I am of course very interested in what you have to say. I'm not someone who sticks to the beaten track myself. I understand what you said about no one knows what to treat it with unless you actually have it, I haven't had any joy with docs etc. I will give pretty much anything a go. I think if I'm willing to put steriods on my face what won't I put there?? So if your willing to enlighten me... :D . Lily I have been checked out. No other symptoms as of yet thankfully. I am a little surprised that no one seems to mention diet as "you are what you eat!!!"

[canoe]

Hello Again Mick,First off,are you in the USA?I'm sure a similar product is available anywhere,but would like to give you the identical one I used.I live in South Dakota.I agree with you completly on diet. If you check my past posts you'll see what I mean.
Scarlett, I don't think any of the drug companies would be the least bit interested in this product. It's not a drug and it can't be patented.I'm sorry if I come off as secretive.There is a right time and place and this obviously isn't it. The sarcasm I detected in your post confirms this.I'm aware it sounds too good to be true. I do intend to share this, but I would like to proceed slowly. I responded to Mick because he is not on any meds.This isn't a cream, it's used internally. And although it wouldn't interfere in any way with any med,the meds would stop this from working.Be patient please and be kind, we're all in this together.Love, Canoe

[Lily]

Mick I am sorry that your post has turned out this way :( Of course it's up to you what you do but please go into this with eyes wide open and learn as much as you can so you can make the best decisions for you. You have not stated which sort of rash this is, and what form of Lupus you have been diagnosed with, if we had more information we could try and help you.

We have had a lot of queries in the past about diet and I think the general consensus is to avoid eating too much animal fat, limit sugar intake, eat lots of fresh fruit and veggies, aim for a low fat but balanced diet. Of course avoiding foods we are allergic to goes without saying, as does things like alfalfa sprouts which contain a substance known to aggravate Lupus. Some people report less joint pain if they avoid the nightshade family i.e tomatoes, potatoes, peppers etc. But that's not the case for everyone. And there must always be a balance so that we take in our nutritional needs. Drinking plenty of water is also good advice. I personally avoid too much coffee and tea and any carbonated drinks too. But I do admit to a love of chocolate ;) :P a girl has to have some vices :lol: Besides my caffeine intake is pretty low so I can afford the occassional chocolate splurge!

Canoe, You have also stated in the past you practice herbal medicine and and people come to you for advice. Whether you profit from this or not only you know but just as we hold our doctors accountable for the prescriptions they provide us with, then you as a practitioner should take on the same responsibility to validate your claims and practice some responsibility.

If you have nothing to hide then why didnt you disclose what worked for your rash? The description of this particular forum is to share tips and suggestions. Why comment in the first place if unwilling to share.

Is it because when you have put forth rather dubious proposals a counter argument is often started, I would have thought that was helpful, especially as you say you have nothing to hide. Its your chance to put your views across.

For example your remarks some time ago that a woman here may be able to get off prednisone by taking licorice extract and the possible dangers and contraindications were pointed out to you, you feel you were somehow badly done by? We have nothing to hide but you seem to be quite keen blindly recommending things to people without any substance to your claims and in this current thread not even stating which product you consider helped you. It's akin to the very reason I removed the link that Mick was asking us about in the first place.

We wont be waiting with baited breath for you to reveal your 'secret'. And I think considering past form of yours that Stargazerlilly had every right to take the tone she did. It's something you fail to understand in the way you come across. Sure........ voice your opinion, but provide facts or scientific evidence that it works. Not just your own heresay and your own story that you expect everyone to swallow. We dont know you and we dont know what your medical situation is, I'm pleased that you have been able to stay off conventional medicine. But as you asked Mick what sort of rash this was, I ask the same of you, and further add that you are a very lucky individual whose Lupus has gone into remission (just as mine did 30 yrs ago for no particular reason and resurfaced slowly over a period of 10 yrs then hit with a vengeance) You should be out living your life rather than making extra work for the individuals that devote their time and energy freely to help keep this site the excellent one that it is. We ask you to please not use this site as an arena for your own services and products which incidentally is against site rules and something we agree to when we join.

I will also state again that where there's smoke there is fire - where there's a lupus rash there is Lupus activity brewing. And its for that reason that we need checkups with our doctors and to discuss with them any alternative therapies we wish to embark on and monitor our progress on those and also our prescribed medicines.

We would not be doing the site a justice if we did not point out to people all sides of the argument. People often come here very vulnerable and desperate for help. It would be negligent of us not to do that, just as it is shallow for you to suggest to someone that they might be able to stop prednisone and take licorice extract and some other herbs and all their troubles may be over. You didnt even know anything about that woman and you fail to go into detail about possible adverse reactions and contraindications, in the case of the licorice extract. This is why you are challenged when you post. Making blanket statements and advising someone who has severe organ threatening Lupus to take a Licorice extract to enable them to get off prednisone may seem like a great suggestion to you but it gives false hope to some, it also fails to point out the pitfalls and clearly demonstrates your complete lack of understanding of Lupus from a wider point of view, taking all things into consideration.

We like to keep an open mind, however in certain cases we feel we need to step in and point out things which some members may not be aware of, and thats because we care about all our members and this site was set up to help lupus sufferers and educate them so they can find the best and safest solutions for them. It's for all Lupus sufferers, no matter what sort of Lupus they have.

Yes we have pulled posts of yours before but for very good reason. I thought it was about time those reasons were brought into the open. I'm just sorry it had to interfere with Micks original enquiry.

It's a lot different to someone who takes something themselves and believes it helps them and mentioning it if someone asks. It's someone willing to supply remedies to someone and offer their services using our site as their launching pad. Something you have done on more than one occassion. Not something we condone in the interests of all.

And as you can guess by this thread this is not the first time that Canoe has been cautioned and asked to clarify her opinions. If its good enough for us to err on the side of caution then it goes both ways I'm afraid.

And on that note I think further discussion on this is fruitless and I would suggest Canoe that if have anything to add that it be addressed to Joanne the site owner.
I have closed this thread but will leave it in the interests of all.

Take care,

Lily