Low Dose Naltexone-anyone taking this

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popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/20/2009 12:21 AM (GMT -6)   
Hi all

I have read that this is really effective in stopping the progression of RRMS and chronic MS. It is also said to specifically help fatigue and spasms. Apparently people see results within DAYS!!

Sounds too good to not give it a try. (Though not if you are taking beta inteferon.) wink
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/20/2009 7:37 AM (GMT -6)   
You cannot take any of the interferons or any opioids or narcotic type pain relievers.  It is said to have good pain relieving effect.  Some say it helps with fatigue.  I very seriously considered this but I changed my mind when I saw the studies on MS progression.  So far those are inconclusive at best.  It might be a wonderful symptom management drug and that is good too, but only if it really does the job as it does limit what you can take while on it.  I just am not convinced that it does anything for progression. 
 
It has been out for a long long time and used off label in MS for at least 20 years.  If it was really effective at progression, I think it would have been proven by now.
 
The anecdotals are either......"I feel great!!!" or " I have not noticed any change."  There doesn't seem to be any bad side effects and certainly none that last if you stop taking it.  Considering it is used at much higher doeses to keep narcotic drug abuser clean, it make sense that is helps you feel good (lots of energy, no pain etc).  If you give this a try, please tell us what you think.  I do know there are members on "Chronic Pain" here at HW that take it and love it.  You might post there and see what they say.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 5/22/2009 12:57 PM (GMT -6)   
I have an appoinment to see my Neuro on June 30th and I plan on talking to him about it since nothing else I have tried seems to work on me. Only thing is my appointment is more than a month away.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Just recently had Treatments of Cytoxin
                                        Liked to kicked my butt!


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/23/2009 10:20 PM (GMT -6)   
Hey Bohuck,

I went to my medical centre yesterday and told the dr what I wanted to do. She had never heard of it and wanted to know who had prescribed it for me. Greatly daring I said " You".

She did not look happy and proceeded to read me all the side effects (to a 50mg tablet as that is the standard dose)) only looking happier when I told her that I was only planning to take 1.5 a day. Possibly increasing it to 3.00 after a month. She said she wanted me to return for bloodtests for kidney & liver after 3 months. Surething I said obligingly.

Then I took the script to my compounding chemist who said fine & he agreed to put in a fill that had no inflammatory ingrediants. He also suggested alternating 1.5 one day and then 3.00 the next when I decided to increase it.

Went to make it up and came out saying "Who has been in my drawer? Where has all the naltrexone gone??" Apparently it is very addictive so desirable to some. Anyway I start tomorrow - will let you know how it goes. turn turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/24/2009 6:23 PM (GMT -6)   
Hey Bohuck,

Thought I would send you this link - there is a lot of info and she has a list of drs all over the world who will prescribe.

Crystal's MS,TM & LDN Website
www.crystalsmstmldn.org

She says you must not get slow release naltrexone and I think she recommends a dose of 4.75mg though I am starting lower because I tend to be very sensitive.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.

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