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Posted 10/26/2006 5:59 PM (GMT 0)
I keep reading on all kinds of forums that people are going to
Low Dose Naltrexone. Giving up the conventional injections for this
method.

I have read everything on the net regarding it and asked my Neuro whom, thinks it is to experimental...yet all indications show that it seems to work pretty good and the cost is amazing.

My dad used to tell me " Son, if it sounds to good, it may be be baloney instead of steak"

I would like to hear from our forum members on this drug.

Posted 10/26/2006 7:22 PM (GMT 0)

Snowdog

Glad you posted about this.  I have posted here and another board about LDN and got few responses. 

I have researched this too and after presenting my Dr with the research and her looking into it for several months she wrote the rx yesterday (she's not a neuro).

I agree the info sounds almost to good to be true but why isn't more being done to pursue trials, etc based on such good ancedotal info.  Could it be because pharmaceutial co pay for research and it is not in their best interest to have people stop taking their $1,200 month drug and switch to a generic drug that costs about $20 month.  Call me cynical. 

If you want to try it I would look for another Dr to prescribe it for you.  Some people are having great results but not everyone is. I haven't heard of any bad results, just no change. A minimal risk I think is worth taking.

I should get my LDN sat or Mon and can't wait to give it a try.

I'd be interested to know if you try it. 

Posted 10/30/2006 10:33 PM (GMT 0)
Nalrtexone has been a popular alternative therapy for chronic neurological disorders for yesrs, but the only evidence is anecdotal. It has never been shown to be superior to placebo in controlled clinical trials. More information can be obtained from a recent National MS Society Bulletin, which is copied below.


Hey Snowdog

Sorry, again i edited this message to exclude the entire article. This is great info u'v found, but please post a link so we can all go read it. Thanks

rhonda

8. No posts of copyrighted material.  Information copyrighted or owned by any individual or entity other than the person posting should not be posted on the message boards without the consent of the owner.

Post Edited By Moderator (rhondab) : 11/15/2006 2:42:02 PM (GMT-7)

Posted 10/31/2006 2:43 PM (GMT 0)

I had heard about the MS society giving Dr Zagon some money to start a study.  I am encouraged that the MS society thinks enough of the ancedotal evidence to fund the pilot study.  It's a start.

I am not aware of other clinical trials with LDN and MS. If that is so I don't know how it can be said that LDN is not superior to placebo.  Not saying it's better or worse than placebo just we don't know, since only ancedotal evidence at this time. 

Got my LDN yesterday.  Starting tonight will let everyone know how it goes.

Posted 11/3/2006 12:35 AM (GMT 0)

Actually a small open study into its use in Inflammatory bowel disease - a disease which also has a slightly elevated risk of MS associated with it -  has shown enough promise that it has gain further funding for a larger trial.

Here is a http://www.eurekalert.org/pub_releases/2006-05/ps-psr052606.php 

you'll have to copy it to use it as it doesn't work otherwise [I'm not sure why].

Post Edited (SMSIRL) : 11/2/2006 5:40:33 PM (GMT-7)

Posted 11/3/2006 3:33 PM (GMT 0)

Hey Snowdog

Sorry, I've had to edit your original message to exclude the article. Please provide us with a link to the article so everyone can see what a great find u have! Thanks for understanding.

rhonda

8. No posts of copyrighted material.  Information copyrighted or owned by any individual or entity other than the person posting should not be posted on the message boards without the consent of the owner.

Post Edited By Moderator (rhondab) : 11/15/2006 2:36:28 PM (GMT-7)

Posted 11/16/2006 1:05 AM (GMT 0)

SammyJo

I'd like to hear more about your experience with LDN. 

I started taking it on 10/31 and have noticed increased stiffness.  I am already so stiff (walk like Frankenstein with bad balance, what a combo LOL) and I have been tempted to stop and see if it's the ldn, or herxing from the ldn or the abx I take for lyme. 

How long do you think I should give it before discontinuing? I am taking 3 mg for a month, then I planned to increase to 4.5mg. I was dx with MS 7 yrs ago and then lyme 1 1/2 yrs ago.  My lyme Dr thinks I have had lyme many years and it triggered an autoimmune disease (MS?).   

Posted 11/16/2006 1:55 PM (GMT 0)

SammyJo

How long before you knew ldn was working?   

How much magnesium do you take?  I take some but maybe it is to small a dose. 

I think anything that boosts the immune system would be good for lyme too, as well as many other diseases.

Is Dr Bihari your Dr?  My LLMD rx ldn at my request but doesn't know much about it. She researched and has an open mind.  I would also like to see a Dr who knows about ldn. 

Posted 11/16/2006 3:35 PM (GMT 0)
Hey Rhonda,

I just saw your editing. I appreciate you reminding me of the rules.
It must be the MS that made me forget and get sloppy. LOL

You are realing work hard at being the new moderator and you
are doing a great job.

Continue to help me out whenever I forget.
Posted 11/16/2006 3:45 PM (GMT 0)
That's ...."really working hard.......

Sentence 14a, sub paragraph d....cognitive issues with MS....a person
may experience the fact that he/she may not be able to spell or put a
sentence together without a 10 year old's help. (from Snowdogs Journal)

Sorry I keep screwing up Rhonda.
Posted 11/16/2006 5:25 PM (GMT 0)
Hey Snowdog

HAHAHAHAHAHA!!! Can a 7 yr old's help be added to u'r journal?? Hey, u gotta get u'r help where u can...and from those who are more capable than us!

I am sorry to have deleted u'r text. It was great info. U'r not screwing up at all! We all do things in effort to help each other here and i think it's great u do so much! This is a great group of people here and the overall feeling is that we all care for each other and that's a direct result of all that everyone...like U...does to support each other. Thanks so much for u'r help and understand.

rhonda
Posted 11/16/2006 11:04 PM (GMT 0)
As the others have said, LDN has LOTS of anecdotal evidence to support it "working"...but of course like all anecdotal evidence, you'd be hard pressed to find any anecdotes about those folks who tried it and found it did NOT work...and wasted months of not taking meds that HAVE been proven to work with MS (to slow progression), because apparently one cannot take LDN and any of the CRAB medicines.

The National MS Society has provided some small funds for a study, so there's a start of a legitimate double-blinded placebo-based test which may prove it helpful, but that's several years down the road.

Some doctors are willing to try alternative / complementary meds like LDN..but then you have to find a pharmacy willing to make up the concoction (as it does not come in a standardized pill form), and be able to get it from the pharmacy. And generally your insurance won't cover it. There is a mail-order pharmacy that will do this...an internet search should find it.
Posted 11/17/2006 12:24 AM (GMT 0)

If anyone is interested in LDN check their website. They list several reliable compounding pharmacies who will ship the meds to you.  My months supply was $20 which included shipping,  so I don't even use my insurance as my co-pay would be the same anyway.

It is two weeks today that I started taking LDN and my bladder problems (frequency & urgency) have eased significantly in the last 5 days. Coincidence I don't know, but I not felt this way (bladder wise) for several years.   However the stiffness in my legs is worse, so I'll see if that changes. 

I have found some information about LDN not working.  No bad side effects, just no change.  It doesn't work for everyone but it does for a large percentage. 

I have read that you can take one of the drugs (I believe copaxone?) with LDN but not the others. 

Posted 11/17/2006 1:04 AM (GMT 0)
Kimc,

 

     I remember you saying you were going to try it and was wondering if you did and how it was working.  Please keep us updated!

 

     From what I understand, Copaxone is the only crab you can take it with.  The interferons are immunosuppressants and since the LDN is a stimulant they counteract each other. 

 

     Good luck to you, I hope you are in the percentage that it does some good :-)

 

Kimber

  

Posted 11/17/2006 1:58 PM (GMT 0)

Thank you Kimber. 

I will keep you all updated.  Have only been taking it now for alittle over 2 weeks.

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