LDN (Low Dose Naltrexon) and Wegener's?

[Geoff]

Really interesting post Marta. Its great to read about 'new' drugs and treatment.

Tell me Elephant...what chocolate hits the spot for you??

[Sangye]

Interesting info, Marta. I've got LDN on my list of questions for Dr Seo next month.

[drz]

Marta

Thanks for the info. It helps explains the inactivity on research for it.

[stikker]

I saw Dr Merkel today and I asked him about it. He just laughed at me and said we don't prescribe it.

[marta]

I saw Dr Merkel today and I asked him about it. He just laughed at me and said we don't prescribe it.

That's what the guy who wrote the book experienced. His doctor just shrugged it off but the author asked for a prescription regardless and while he was holding off getting an infussion of an immunosupressant (which incidentally is also known to cause the odd case of PLM - like rtx) for a different reason, he was only on LDN and one other drug for his depression. It was in this time that his symptoms completely disappeared. I don't know that I can take it while on ctx, but after the rtx infussion I will definitely ask for it, as it seems like it can't do any damage, and has a potential to do some good, so why not.

[Sangye]

Please do not experiment on yourselves with this drug. I don't know if it works and am not qualified to say anything about that. But disrupting the endocrine system can cause havoc--nothing that does that is benign. That much I know.

Marta, if you take it after the rtx and you feel better, you'll never know if it was the rtx or the LDN. I don't think that's a good idea at all. At the very least, please make sure your doctors know what you're doing.

I'm definitely going to ask Dr Seo about it next month. I know he'll give me the exact reason for why it isn't being used.

[stikker]

I was going to say the same thing. I'm not willing to experiment on myself. It can always get worse!

[marta]

Thanks guys, but I would NEVER 'experiment' on myself. I will definitely talk to my doctor and do it with their blessing. It's also a prescription drug, so I couldn't do it on my own. I am not a dummy and have a lot to live for, which is why I want to take every possible opportunity to live a healthy normal life.

[chrisTIn@]

...disrupting the endocrine system can cause havoc--nothing that does that is benign.

...I'm definitely going to ask Dr Seo about it next month. I know he'll give me the exact reason for why it isn't being used.

I asked my Wegs-specialist about LDN, he also laughed about it and said something like 'one cured patient isn't enough evidence'. That's all he said about it. As a scientist and investigator, he doesn't take it seriously. From a medical/scientific oint of view it's understandable, still I am very curious about LDN, and I tend to agree with Marta that it probably won't do much harm, and might be worth trying.
Wonder what your Dr Seo will say about it, Sangye!
By the way, what is 'havoc'?

[Sangye]

Havoc basically is the same as chaos.