Low Dose Naltrexone?

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GregB777
New Member


Date Joined Dec 2007
Total Posts : 9
   Posted 12/27/2007 9:15 AM (GMT -7)   
Hi everybody--
 
I'm new here.  I was trying to find out information about this therapy  called Low Dose Naltrexone (LDN.)  Is anybody currently taking it, or has anybody taken it in the past?  What results, if any, did you find?
 
Any information would be greatly appreciated.
 
-GregB
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 12/27/2007 11:42 AM (GMT -7)   

Hey Greg,

Welcome to HW.  I see that you posed that same question on several boards.  What is your diagnosis?  Low dose naltrexone has been discussed here.  Most of us are on a traditional therapy for progression.  Rebif, Betaseron, Copaxone, Avonex and Tysabri are the ones our members have the most experience.  We have just a couple that have tried LDN.  LDN is not an approved therapy for MS.  It has been available for more that twenty years as an off label drug.  The results have been purely anecdotal.  It has not been part of any thorough double blind testing for MS.  It seems that it may be headed for some testing soon. 

There is plenty of information on the internet if you just google LDN or Low Dose Naltrexone.

By the way, for your safety you really shouldn't put your e-mail address in your post (it appears in your crohn's post). You may want to go back and edit that out.  You can add it to your profile.  Click on the "control panel" that is on the blue bar in the upper left.  Then go to "edit profile". 

Love and prayers,

 



Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 

Post Edited (Gretchen1) : 12/27/2007 11:52:35 AM (GMT-7)


GregB777
New Member


Date Joined Dec 2007
Total Posts : 9
   Posted 12/27/2007 7:35 PM (GMT -7)   
Hi Gretchen--

Thanks for the info. I did search the forums, but the threads I found were spotty and not much use.

I have no diagnosis right now. My mother died from MS, and had a terrible time. That was before Tysabri or other things were available. It was quite horrible. She was diagnosed when I was 2, and I saw her deteriorate up until she died when I was 20. Since then, I have been doing a lot or research on autoimmune diseases (my aunt has Type 1 diabetes,) so that is why I have posted to several forums. I am learning that a lot of these autoimmune diseases seem to have certain biochemical signatures in common.

Even though I have no diagnosed disease, I am considering trying LDN because of several symptoms that have no diagnosed cause. It seems it has few side effects.

-Greg

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/27/2007 8:10 PM (GMT -7)   

If you're really interested in pursuing this, here's what the LDN folks consider a "definitive" website:

http://www.lowdosenaltrexone.org/

While it may have few side effects, there is also no real promise that it doesn anything to slow the progression of MS.  Since you're not (yet) diagnosed with anything, it may relieve some symptoms, and there is always the placebo effect, which is very real and very helpful when you're in limbo.

I wish you well.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


hms1
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/28/2007 12:53 PM (GMT -7)   
Greg,

You stated in your post; "My mother died from MS, and had a terrible time."

I am interested as to 'how' MS in-and-of-itself kills? The answer is elusive.

Mike

GregB777
New Member


Date Joined Dec 2007
Total Posts : 9
   Posted 12/28/2007 3:31 PM (GMT -7)   
Hi, Mike--

Well, perhaps I wasn't specific enough. As most people know, MS does not "kill" you in the way, say, Lou Gehrig's disease might. It, however, does weaken you, and, in advanced cases, leave you incapacitated for an extended period of time.

This weakened state, in my mother's case-- after about 20 years of being unable to walk, and near the end, not move much at all--- I think severely deconditioned her heart. She woke up one day, complained of feeling dizzy, passed out and died. Autopsy showed no classic heart attack, heart blockage, stroke or any other obvious cause of death. Her heart just stopped beating. She had been complaining of heart palpitations and racing heart for about a year before she died, but two cardiologists found nothing organically wrong with her.

So, I am left with no real "answers", but my assumption is that after not being able to exert herself or even move much for two decades, her heart muscle was just extremely weak. Who knows, really.

Even if MS doesn't "kill" you per se, it does leave folks--- at least in severe advanced cases like my mother had--- overall physically weakened and susceptible to other things. So, in that regard, it does kill you after all.

(Realize, I'm talking about advanced cases where people become unable to walk or move for, say, a decade on end. Most MS patients, thankfully, never reach this level of disability.)

Another friend of the family who also had MS became entirely unable to move at all, or even eat or drink or talk. The last year or two of her life she was on IV and intra-gastric feeding before she died, as I recall, of an opportunistic infection in her lungs. This sort of thing happens when you don't move for extended periods of time. So, MS killed her as well. 
 
 (She was actually the worst case I have come across.  My mother was still able to chew and swallow and speak, though she had lost control of her excretory organs.)

Anyhow, these are just my observations.

Post Edited (GregB777) : 12/28/2007 3:38:31 PM (GMT-7)


KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 1/1/2008 9:43 AM (GMT -7)   

Hi Greg

I am sorry to hear about your mother.  That is terrible and I can understand your quest for more info. 

LDN is taken for several conditions and from my understanding stimulates the immune system and the MS drugs have an opposite effect on the immune system.  You can't take them together except I think copaxone with LDN is OK.                        

I sent you an email, did you get it?  Any other questions don't hesitate to ask.

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