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Posted 5/3/2010 7:58 AM (GMT 0)
http://www.lowdosenaltrexone.org/ldn_and_ai.htm

I know that I've talked about Low Dose Naltrexone but I find the information so promising that I wanted to post about it again.  For members that live with fibromyalgia, crohn's, ra or any other auto-immune disease I wish you would read the above site.  I'm not affiliated with this at all so I hope I'm not breaking any forum rules posting this site.  Take care and hope for a low pain day or everyone.

Posted 5/3/2010 9:24 AM (GMT 0)
I think it's interesting. I was telling my husband about it the other day. I have done some reading about it. It seems like you either have to have a doctor who is extremely involved with your care in order for this to be successful. Maybe this is the future of PM. Are you on LDN?

Flower
Posted 5/3/2010 11:05 AM (GMT 0)
No I'm not on LDN but have never been dx'd with an auto-immune disease before. My husband does have a blood borne disease though and he will be talking to his doctor about this when he goes in for his check up on May 28th. There has been some testing done with this type of disease also.

If I do find out that I do have an auto-immune disease and am referred to the rheumatologist at my doctors appointments I have coming up I will speak to her about this. From the great results I've had since starting the steroids, it is looking like I do have Polymyalgia Rheumatica but I haven't seen anything on the LDN websites regarding this disease.

I was surprised with the results they are seeing with Cancer and Aids patients. The problem seems to lie in the fact that this is a older, cheaper & safer drug that the drug companies aren't going to make money off of so no company wants to fund the research necessary to help so many people.
Posted 5/3/2010 11:42 AM (GMT 0)

I have been on LDN for over a year and it has helped me so much.  It is worth trying as you know within short time if it will work for you.  Its about $35 a month, I get mine from Irmat Pharmacy in NY!  The Pharmacist who is the most knowledgable and helpful is Marcy!

XXOO
Patti

Posted 5/3/2010 1:33 PM (GMT 0)
Hey edt , I live in nyc too , do you mind sharing what you take the ldn for and how its helped ? I'm HIV+ and have been told about this drug but never got to acytually converse with someone who's used it .I would really appreciate your feedback . Thanks Mikel
Posted 5/3/2010 6:37 PM (GMT 0)
Jag,
Thanks for posting the link. I confess I didn't read all the sections, but I did read enough of the general material. I think edt is taking this for her pain, but I'm not sure so I'll wait to hear her response. I do think anything that can offer us some hope with few side effects is worth a look, but I think your doctor really needs to know what he/she is doing with this med.

Interesting thread.

PaLady
Posted 5/3/2010 7:43 PM (GMT 0)
Mikel, I'm glad that you saw this website. I was thinking of you when I saw that this is being used for HIV. Good Luck and EDT is a very nice person and when she gets around will help you all she can.

PaLady, I don't think this will be the drug to help me but from what I've read I think it could possibly benefit alot of our members. There is actually alot of information on the web regarding LDN and some video footage too. It's very interesting reading.

Hi, EDT, I thought you'd pop in here when you saw this post. I remembered that you had good results with LDN.
Posted 5/3/2010 9:23 PM (GMT 0)
Thanx brother jag ,I appreciate the thought . I've been thinking of trying this LDN but I'm a little scared about it , I do hope edt responds but in any case the thought is much appreciated my friend .I hope your doing well and having a lpd .Mikel
Posted 5/4/2010 1:20 PM (GMT 0)

Hi Everyone,

Sorry it took so long to post.....LDN has been a lifesaver for me, yes its for Chronic Pain as well as all the other published conditions....the studies have not been published as they are gathering info from people like us.

Because there are literally no side effects it is SO WORTH the try $35 a month in comparison to what I pay for other

Drugs is nothing....what its done for me is cut the pain level in half, I sleep through the night and when I do wake up I am able to go back to sleep.  There is so much published info on the LDN site on everything but CP.   I am assuming my response was so great because I probably do have Fibromyalgia, which probably alot of us have with CP.  The goal is to get me off pain meds...haven't made it yet somedays only need 1 BUT my quality of life is so much better.  I say to everyone TRY IT, you know within a short time if it will help you!

Mikel email me your questions, I will give you the contact info for Irmat Pharmacy and forward you some of the recent studies that Marcy forwarded me for my PMD.

XXOO
Patti

Posted 5/4/2010 7:57 PM (GMT 0)
Patti,
I was wondering if the studies re:CP are more for fibro pain (or similar symptoms), or other types of pain. Just my thought but I would love it if you could post any links to articles that deal directly with CP and LDN, although I see from your post the studies aren't published.

It's ok if you don't have that info. or don't want to post it. It might be something Chutz would want to consider for the CP101 thread, but I'm only speaking for myself not her!

Thanks,

PaLady
Posted 5/6/2010 1:24 AM (GMT 0)

PAlady,

If you email me I will forward you the info that I got from Irmat.

XXOO
Patti

P.S.  My PMD is 100% on board with using LDN for CP!

Posted 5/6/2010 4:50 AM (GMT 0)
Jag
I think this information is absolutely fascinating! I have only read the first page that initially came up, but from what little I have read the the premise seems sound and it makes sense! You know the last few years there are allot of older drugs that are being looked at for possible other uses, Two drugs, ropinirole (Requip) and pramipexole (Mirapex) are used for the treatment of Restless Leg Syndrome (RLS.) These were originally Medications made and are still used to treat Parkinson's they just changed the dosage, and found it works great to treat RLS. I can see where this LDN has a really huge potential for help out allot of people. I like the fact that the medication its self is not treating anything it is just helping the body treat or correct its self! Thanks for posting the information, Jag! I will definitely go back and study this thoroughly!



White Beard
Posted 5/6/2010 10:18 AM (GMT 0)
It would be a wonderful thing if something this simple could help you with the UC and fibro, White Beard! Cheap with little or no side effects would be a miracle in the eyes of a CP sufferer.

EDT, thanks for helping out our family here with your experiences with LDN. You are a great asset since you can be our little guinia pig. I know we have discussed this in the past with little response but I think this is definately something worth checking into further for alot of CP sufferers. Sometimes most of us that suffer from chronic pain have many underlying causes which makes us very hard to diagnos and treat. This tends to make it easier for doctors to throw some narcotics our way or inject us with steroids thinking that once again they've cured us. They don't realize how defeating it is for us when we find little or no relief from the treatments.

I've been searching for a cure for 9 yrs now since the first annular tear was found. Every year things get worse and am now on some pretty high doses of narcotics with little pain relief. Old age has got to be better than this. Good Luck to everyone!!!!
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