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Robinj

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 #31 
Why always trying to prove things bad even though it is helping people??

Not sure what  you are referring to when you say ALWAYS.

Anyhoo,
The following is copied from the LDN website:

How does LDN work?

> LDN boosts the immune system, activating the body's own natural defenses.




I am not going to try something that:

A. Boosts the immune system
B. I have to buy online from a Canadian website (no offense Bun, most of them are located in India)

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Robinj

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 #32 
And to be honest with you marilynb, you yourself have posted that you are not dx'd with lupus, so for you to suggest (many times over, I might add) that LDN will help lupus is erroneous.


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Cakelady

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 #33 
Isn't this kinda why Anthony's UVA1 thread got pulled ?
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Robinj

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 #34 
I was thinking that
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upstater

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 #35 
Marilynb...

I think it's less about the LDN and more about your approach to it. It's great if it's helping you. And I get if there is something that is helping you and you think it may help someone else, that you want to share that. However, you are coming across like sales pitch. And implying that LDN is the only solution and that everyone should just order some from Canada.

It's just not an approach that is going to be well received. 
Robinj

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 #36 
Exactly Upstater
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marilynb

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 #37 
Well I've always been the type that if I find something that helps sick people, I pass on the information. But if the people here want to keep taking the harsh prescription drugs that hurt them as much as helps, I guess I can't help anyone here. Once again I repeat, no side effects, and I feel so much better. Robin I do have lupus, butterfly rash, muscle fatigue, joint pain, and sun exposure problems, all included. Have a good day everyone. I'm done, you don't want help what can I do? Ask your doctor about it.
Robinj

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 #38 
You are the one that said you didn't have a dx
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marilynb

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 #39 
And we all know rheumatologists don't like to label us with lupus. Also how hard it is to get DX'D. Personally I don't want lupus on my medical record, I know what I have.
Robinj

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 #40 
K
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taffylinden

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 #41 

OK, I have to step in here. I spent a lot of time researching LDN and posting in marilynb's previous thread, "Help for our immune systems," so I won't go into all the reasons I urged caution. Please go back and read or reread that thread.

Marilynb, I get it that you're into alternative medicine and distrust standard Rx medicines: "Really people, what is your rheumotologist doing for you other than giving you nasty drugs to try and help your SYMPTOMS, and the drugs half the time make you sicker, THINK ABOUT IT!"  

If you want to try medications that have not been widely studied for the touted benefits, that's fine for you. But because lupus is such a serious disease, and because so many patients come here in desperation, I don't think posts with such wild endorsements that they read like sales pitches are a good idea. 

The Moderator expressed the LFA's views when he said, "Additionally, lupus is a complex disease that is potentially life-threatening. No one with lupus should rely on complementary or alternative practices instead of the medication they have been prescribed by a doctor who is experienced in the treatment and management of lupus. Anecdotal evidence of success from one form of therapy does not mean it will be universally beneficial." 

And this: "In fact, some herbal supplements can make a person’s lupus symptoms worse, or interact in a harmful way with the medicines a doctor has prescribed. Therefore, before beginning any complementary or alternative therapy, it is very important for people with lupus to discuss these practices with their doctor (especially if planning to use herbs or supplements). Additionally, it is important to continue taking the lupus medications prescribed."

Marlynb, it's fine that you're eight weeks into the six months LDN supposedly takes to kick in and are already feeling better. I'll remind you again that any disease with flares and remissions is a ripe field for all kinds of dubious remedies: someone attributes feeling better to X when in fact, she simply went into a natural remission. There's also the placebo effect. 

Please, everyone, before trying any mediation, wait for large-scale, double-blind (neither patients nor docs know who's getting the real deal and who's getting a placebo) repeated clinical trials, and get your rheumatologist's OK. 


 

marilynb

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 #42 
Hi Taffy, I understand people need to be careful, I see a rheumatologist. ldn starts to work in 1 month, not six months, I'll just keep you guys posted how things go.  take care all.
Cakelady

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 #43 
I will also like to point out that you posted this to me and robin and a few others. Most of if not all of us are looking for ways to better our lives. What we don't want is someone coming on here acting superior to us thinking they know everything about a certain drug. No matter how much reasearch you do there is always something you can miss

For example I took mexotrexate for years I worked in the research field I thought I had done my homework on that drug but boy was I wrong. That drug has caused so much havoc with me it's not funny. Also so when we question you or express our opinion you delete the post? What's up with that? You know what it tells me, that anytime you start a thread not to respond to it. I take time out of my day to respond and for what for you to delete it? No thank you. My time is worth something.

One last thing. You may not have a lupus dx but you think you have lupus and you might who knows but there are between 60-80 different AI's out there that mimic lupus. You might just have one of those diseases but are stuck on lupus. I urge you to keep an open mind

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marilynb

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 #44 
Hi Cakelady, I don't know what you mean deleting posts, I haven't done any such thing, I don't even know how to delete a post, I would think the lupus board would only have the power to do that. I don't feel superior to you gals at all, was just trying to help. Sorry for the misconception. Please remember I am grateful to everyone here for what I learned. Your problems with mexotrexate are exactly why I am trying ldn. I am wary of strong prescription drugs. I'm really not an enemy, I thought I was being helpful, sorry!
upstater

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 #45 
I think everyone here is interested in information, sharing and support. I know that's why I come here. I am interested in hearing people's experiences....what works, what doesn't. But I remember everyone's situation is different. And everyone makes their own choices in their best interest.

I have chosen to take Plaquenil. I believe it has protective properties and may help overall from further progression. But I wouldn't tell anyone else that they should be on it. And I know it didn't work out for Taffy. But she also doesn't tell people not to take it.

I think there is room for all of us here, as long as we don't push an agenda or come on too strong.

I am glad to know that ldn is out there....to keep in mind. And perhaps ask my rheumatologist about, if needed. 
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