LDN (Low Dose Naltrexon) and Wegener's?

[chrisTIn@]

Oh. I see. But LDN is really LOW dose, 3 to 4,5 mg. Would that be enough to disrupt the endocrine system?
Doesn't make sense to me.
Still I agree, WG-patients have to be carefull.

[Sangye]

If you look at the mechanism of action, it works by interfering with the endocrine system. It's such a delicately balanced system and takes very little to disrupt it. Also, it runs by feedback loops. Whatever change you make in one hormone sends feedback to others. You cannot change a single hormone in the body without the entire endocrine system being affected. This is why pred causes such deep and extensive damage, even when used at low doses.

[chrisTIn@]

This is why pred causes such deep and extensive damage, even when used at low doses.

Hmm. Interesting...
Still...most WG-patients HAVE to use 'pred', simpley because there is no alternative.
Would be very interesting if some medical student would start an investigation,
a scientific trial to test whether medication like LDN is really effective,
and if it has less side-effects then predniso(lo)-ne.

[Sangye]

Absolutely, no way around pred. There just isn't any other drug like it, or any natural supplement or herb that can come close to what it does.

I wouldn't hold your breath on a medical student testing LDN. It takes a lot of money to do even simple research that is of high enough quality to be useful.

[norcalian]

Hi Sangye, Did you ever get any info from Dr. Seo about LDN?

[Sangye]

Yes, each time I see him I start a thread taking questions ahead of time. I put the answers in that same thread. You might do a site search for LDN.

[norcalian]

Yes, each time I see him I start a thread taking questions ahead of time. I put the answers in that same thread. You might do a site search for LDN.

Found it. Thanks!

[norcalian]

Some of you may have already seen this article...It's a little nauseating...but it's also interesting what researchers are looking at out there.

Worming Your Way To Better Health - Science News

[Sangye]

Very interesting article!

Three years ago I had a small Wegs leg ulcer explode into a huge one over the course of a couple days. It was horrific and no doctors could figure out how to get it to heal. A vasculitic ulcer is much different from the usual skin ulcers they see, like diabetic ulcers. Vasculitic ulcers have too much blood flow to the area and are extremely painful. Diabetic ulcers have insufficient blood flow and look horrible but are painless.

I finally decided to see about using medical maggots to heal the wound, since it had just been FDA-approved a couple months prior. I couldn't find anyone to use them on me. I finally contacted a doctor in another state who was famous for using them but he said he would never use them on a vasculitic ulcer-- it was contraindicated. The procedure for treating with maggots is really quite frightening, as the maggots stay with you for several days!

[Sangye]

Here's the thread containing Dr Seo's opinion about LDN: http://www.wegeners-granulomatosis.c...imization.html