Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Clinical studies that LDN works????

i have a favor to ask.

i have a doctor that will consider LDN if i can prove to him that LDN has been shown to be effective for "my disease" which the nurse says is seronegative spondyloarthropathy.

unfortunately, all the antidotal evidence on here, while being proof enough for me, won't cut it for him.

and though i will print out and fax him the info on the LDN site, i know that will seem like conflict of interest to him.

i have two abstracts from pub med, one for a clinical study for crohn's and another for fibromyalgia:

fibro

crohn's

does anyone else know of any other clinical trial reports, preferably published in peer-reviewed scientific journals, though an abstract from a meeting might suffice, that show its successful use toward any spondyloarthropathies?

thanks in advance,

Hi Sue,
This was posted on an MS site and you may find something that could help.

http://www.takingcontrolofmultiplesclero...b5&start=30


"LDN has been researched for over 25 years. Dr Ian Zagon at the U of PA Hershey has worked with LDN and the opiate receptor for many years. He is widely published in major peer reviewed scientific journals and his research is well respected."
http://www.biomedexperts.com/Profile.bm ... an_S_Zagon

This biomedexperts may be of 'some' use.....

Mind you if your doc is determined not to help, he will find any excuse.

Why not contact your local compounding chemist and see who in your area is prescribing - so much easier to swim with the flow than to try and convince someone who doesnt want to be convinced.


JennyF

That really ticks me off Sue. Enbrel has been proven to be effective for MY disease and it dang near killed me with an allergic reaction to it. Doctors can be such jerks. It's your body. You have the proof you need. It has been tested and found safe on MANY people. Sometimes I really don't like Docs! And "undifferentiated spondylarthropies" .......that is jerk-speak for "we don't know what the heck is wrong with you. der."

Have you had the hlab27 test yet??

Sue.... ok, I have posted the same question (I couldn't find the thread either) and on ldn forum and the yahoo ldn forum. Nada. The LowDoseNaltrexone.org homepage that leads to all those links of clinical trials are actually the same two repeated, or referred to (much the way Fox news creates news) over and over again. Or are press releases for trials that may start soon. Or are anecdotal. Very frustrating. But, wary of snake oils as I am, it still made good sense to me [read an interesting article recently about how intelligent people who think they came up with the connections themselves are the easiest to con]. And the risks being so very low.... I thought it was a good way to proceed for a while.

It seems to me there is an unspoken agreement not to post any negatives about ldn. Which is a shame because I think all info would be so helpful. I chalk it up to 'keep hope alive' After all, my heart bleeds for those with MS. They have, I think, so much more at stake than we do.

Anyway... I would present info that added up to 'couldn't hurt'. (many believe less harmful than NSAIDS). Then a concise print out of how we all think/hope it works. Then the two clinical trials you found.

Here I would add this article;

spondy link

because the first paragraph so nicely explains why these are all auto immune issues that might respond to the same treatment as those in the trials.

And, depending on how you feel about Elsevier;

Elsevier link

which makes you think everyone should be on ldn.. Please notice who funded the article . Still, it's my favorite one.

So, it's frustratingly little. I think we are lucky enough to be in on the beginning of many things because of the inter-tubes, and that doesn't make all of them shams. I think some people pump it up because they are desperate to get on with it (you have to know some researchers like that).

Good luck!
CC ... who has taken enough grief about it she is finally coming at you in capitals...

Jenny, Donnette, and CC,

thanks to all.

finished my research (with your help of course!) and faxed it in to the doctor's office.

now, all i can do is cross my fingers and hope.

Jenny: actually, i was assuming the rheumy wouldn't even consider it, so i have recently done exactly as you suggested. i called in a progesterone prescription to a local compounding pharmacy and while on the phone, inquired as to whether or not they do LDN. yes they do, and he proceeded to tell me the one doctor in town that prescribes it. so i googled her and though she's sort of alternative medicine and doesn't take insurance, called her office. have to call back monday to make an appointment. hoping that she is a mix of alternative and western medicine. hope she is taking new patients. hope she's not too expensive. hope she will consider LDN for me if the rheumy doesn't. so no guarantees but lots of hope.

Donnette: i am HLAB27 negative. have arthritis in my SI as seen on a CT scan, but doctor not sure "what type of arthritis" it is, and thinks it could even be osteo, though i know that wouldn't fully explain my symptoms, and the physiatrists concur. actually, i 'm quite satisfied with "spondyloarthropathy", even more specific than the generic "inflammatory arthritis". honestly, they may not know what kind of arthritis it is, but finally acknowledging that it is autoimmune inflammatory arthritis is a major victory......if in fact, that is the case.

CC: thanks for the links, very helpful. and yes, i agree, i'd like to see as balanced a view as possible. am using the "it seems really safe" tactic with the rheumy because that's his argument for not trying drugs besides NSAIDs which with my history, really aren't very safe either. and yes, i not only saw who funded the article, but saw that the authors are in the humanities and at a vet school, respectively, so not sure how doctors will feel about that. but as you said, "going for the "seems to help and doesn't look like it would hurt approach".

all this uphill battle stuff is funny. even after all this effort, may not work anyway. but what do we have to lose?