Who's on LDN?

Helen · Guest

Are you on LDN? yes
How long? since April 2000
How many mg's? 3 mg--- will try 4.5mg
When do you take it? bedtime

What kind of MS do you have (rrms, spms, ppms)? rrms

Positive changes since/while taking LDN? Many! no fatigue, more energy, less balance and coordination problems, no heat sensitivity, no numbness in legs and hands-- the feeling returned.

Negative changes since/while taking LDN? NONE

Any relapses while on LDN? just old flare-ups the first year and a half and then none for 2 years. No NEW symptoms.

The million dollar question: Will you continue to take it? FOR A LIFETUME!!!

amesie · Guest

Are you on LDN? YES

How long? Since Sept 10, 2002

How many mg's? 3mg, I tried 4.5 but symptoms returned. After switching back, everything returned to normal.

When do you take it? Between 9-11 PM

What kind of MS do you have (rrms, spms, ppms)? rrms

Positive changes since/while taking LDN? I could not use my right hand at all. After 3 nights of LDN it was improving and I have full function now. Less fatigue, more energy, less headaches

Negative changes since/while taking LDN? NONE

Any relapses while on LDN? NO

The million dollar question: Will you continue to take it? NO doubt in my mind...I will never stop. Very Happy

davizona · Newbie Joined: Jan 10, 2004 Posts: 2

Are you on LDN?yes
How long?6 months
How many mg's? 4-5
When do you take it? between 9 and 12-1am

What kind of MS do you have (rrms, spms, ppms)? rrms with some permanent symptoms

Positive changes since/while taking LDN? more energy, less headaches, better bathroom control

Negative changes since/while taking LDN? none, although I'll reitterate what Larry has mentioned, about other folks and groups reacting so negatively towards the mere mention of LDN. One site that I visit deletes any LDN-related posts that I write, using that old worn out phrase 'it's an unproven medication' as a reason. They are supposedly protecting any MS 'newbies' (as they put it!), from being steered down the wrong path. Rolling Eyes

Oh brother!

Any relapses while on LDN? none

The million dollar question: Will you continue to take it?until there is a cure! Laughing

auntnean@aol.com · Guest

I have been on LDN for 3 weeks. 3MG

I have SPMS

Positive changes: I have more energy and some symptoms have improved (less banding in stomach, more strength in legs).

Negative: Nothing really.

I will continue and my pharmacy is charging $42 for this. I checked and it is covered by drug plan so now I only pay $15/month and hope I get the same results from the new pharmacy LDN that they use.

fightingms · Posted: Mon Jan 12, 2004 7:30 am Post subject:

A Question for LDN users. Can you take LDN and Avonex at the same time?? I have heard from an LDN user that what was reported { they cancel each other out}, is not necessarily true.

Also how many on LDN have stopped injections of any kind all together?
Would this be the better option? I am really liking what I am reading about your experiences with LDN.

I don't think their will ever be a true trial study done on LDN as there would be no money for anyone to gain. Over a year ago I tried to get the NMSS to fund such a study, also tried to get a grass roots approach from any/all interested to call their local NMSS to get them on the ball for such a study. Nothing much happened.

I now think I am ready to try LDN. Just wondering if I can use LDN with the Avonex or not? I have heard conflicting things about this. I would rather not switch to copaxone...maybe just the LDN on its own?

Sorry if I posted on the wrong Forum. Moderator please feel free to move this post to a more appropriate Forum.

thanks for any/all replys....see My MS specialist on the 28th. Am taking lots of LDN ammunition. Smile

Take care...Kim

jend · Guest

Are you on LDN? just starting picking up script tonight
How long?
How many mg's? 3.0 mg
When do you take it? night

What kind of MS do you have (rrms, spms, ppms)? RRMS

Positive changes since/while taking LDN?

Negative changes since/while taking LDN?

Any relapses while on LDN?

The million dollar question: Will you continue to take it? If it does for me what I hear it can then YES YES YES!!!! :

WannaBe · Newbie Joined: Jan 12, 2004 Posts: 4 Location: Central WI

Are you on LDN______Yes
How long? __________90 day's
How many mg's?_____4.5
When do you take it?_11PM

What kind of MS do you have (rrms, spms, ppms)?_SP

Positive changes since/while taking LDN?
I first noticed walking became somewhat easier. (as in Drop foot)
Then later I realize light sensitivity for the eye's has been reduced.

Negative changes since/while taking LDN? None that I can see/feel

Any relapses while on LDN? Does it count the 1 day I forgot to take LDN? Embarassed

The million dollar question: Will you continue to take it? Very much so
_________________
Tell me and I will forget.
Show me and I will remember.
Involve me and I will understand.

davizona · Newbie Joined: Jan 10, 2004 Posts: 2

I aso have heard that of the traditional meds, Copaxone is the only one to be used with LDN, because the others are considered immunosuppressant, although I've seen posts contradicting this 'immunosuppressant' theory. As a matter of fact, if you read up on some of the literature regarding these meds, most are classified as 'immunomodulating'. I have never done any of these meds, only used LDN, I couldnt imagine injecting at this point, since I feel I am doing pretty well. Good luck to you. Very Happy

fightingms · Posted: Fri Jan 16, 2004 9:15 am Post subject: Re: for 'Fightingms'

FlashyKathy · Guest

Hi everyone,

I have been on Naltrexone since Dec.16/2003 at 25mg per day and then went to 4.5 mg on Jan. 14,2004. I had SPMS. Since I have taken this drug my ON that I had since 99 that never cleared up has since cleared. My pain has disappeared, I walk better, talk better, balance is better. I now feel better than I have in 7 years.

I had to cut back to 4.5 because my head kept buzzing all day and night. Told the doctor this and he said that it was my neurons firing back up and he is totally amazed at the difference it has made in me. My husband is calling me the bionic woman because he can't believe the changes either. He had to be careful giving me a hug because it would hurt me so much. I hope this helps every one who tries it like it helped me.

FlashyKathy Laughing

dave · Guest

Hi

Well I have been on LDN for a week now I have noticed inprovements to my walking and ballance
My bladder seems to be behaving itself - good sleep - a lot less pain in my legs when I am in bed
Feel in a lot better mood

''Be as well as you can be''

regards Dave Very Happy

Andy · Posted: Thu Jan 22, 2004 3:07 pm Post subject: Low Dose Naltrexone

Hi, I've noted all the response to this drug and the replies that you all have reported, I now desperately want to try this drug...I have PPMS and now it has progressed to me using 2 sticks for my balance and walking, I also get pain in my feet and ankles.
I've seen my doctor and shown him all the messages in regard to LDN, he wants to give me this but he cannot find anywhere to get this 4.5mg dose only 50mg tablets......The neuros over here in the UK are useless, thats when you can even get the chance to see one!
Where can I purchase this LDN from? Question

Best wishes Andy

dave richardson · Guest

the address for a Dr who can send you LDN in the UK bob.lawrence@ntlworld.com

say you got his name from Dave Richardson Very Happy

Andy · Posted: Sat Jan 24, 2004 6:33 pm Post subject:

Thanks Dave, I contacted Bob Lawrence and hes sent me alot of info, he has been inundated with calls and put me on his waiting list. I am going to my GP this week to push him for a script and see if I can get it from another source.
Andy

dave richardson · Guest

I am glad go for it

Be as well as you can be
regards dave