Who's on LDN?

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Postby CCmom » Mon Jul 12, 2004 12:42 pm

Are you on LDN? my 16 year old son is

How long? 3 months

How many mg's? 3 mg

When do you take it? between 9 - 9:30 p.m

What kind of MS do you have (rrms, spms, ppms)? RRMS, diagnosed 3 years ago

Positive changes since/while taking LDN? Lots of energy, sleeping well, but getting up earlier rather than sleeping all day, no depression as with the interferons, he says he "feels like his old self for the first time since his diagnosis", improved heat tolerance - the kid has been playing golf and enjoying outdoor activities in the Ky. heat and humidity ever since he started LDN, which he wasn't able to do before

Negative changes since/while taking LDN? none

Any relapses while on LDN? none

The million dollar question: Will you continue to take it? Absolutely!

Kim (CCmom)
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Postby msoldtimer » Wed Sep 29, 2004 7:54 am

Are you on LDN?yes
How long? since 9/1/04
How many mg's? 4.5 mg
When do you take it? betweem 10 & 11 PM

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

Positive changes since/while taking LDN? less brain fog, less fatigue, more ttremth and mobility in arms & legs, better balance

Negative changes since/while taking LDN? none

Any relapses while on LDN? no

The million dollar question: Will you continue to take it?
Yes, without a doubt!!!!!!!!!!!!!!!!!!!!
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Postby LindaR » Tue Nov 16, 2004 8:12 am

Are you on LDN? YES
How long? 2 MONTHS
How many mg's? 4.5 MG
When do you take it? BETWEEN 9 PM - 11:00 PM

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

Positive changes since/while taking LDN? IT'S TAKEN ABOUT 2 MONTHS BUT YES I DO NOTICE A CHANGE. I FEEL GREAT

Negative changes since/while taking LDN? NONE

Any relapses while on LDN? NON SO FAR, BUT TO DATE, I HAVE ONLY HAD ONE ATTACK WHICH LED TO MY DIAGNOSIS

The million dollar question: Will you continue to take it? YES
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Postby ramairdad » Wed Apr 27, 2005 12:50 pm

I would like to ask this question. Has anyone with SPMS ever not been able to walk without a walker been able to walk without it after taking LDN?
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Postby watergypsy » Thu Apr 28, 2005 12:22 pm

I haven't been taking it for long but this is what's happened so far......

Are you on LDN? Yes

How long? Since March 13, 2005

How many mg's? 2 mg one night, 3 mg next

When do you take it? Between 11 pm & 1 am

What kind of MS do you have? PPMS since June 03

Positive changes since/while taking LDN? Improved walking, bladder function, sleep, mood, energy & balance. No more spasms, no pin & needles, less brain fog & much less numbness.

Negative changes since/while taking LDN? Only one - even the v. best wine tastes dreadful!

Any relapses while on LDN? Don’t get them with PP but I’ve put the w’chair order on hold.

The million dollar question: Will you continue to take it? Most definitely - YES
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Postby Frank » Fri Feb 23, 2007 11:33 am

Are you on LDN? My mother is taking the LDN
How long? 1 Week
How many mg's? 3mg
When do you take it? 9:00pm

What kind of MS do you have (rrms, spms, ppms)? ppms diagnosed since 2001

Positive changes since/while taking LDN? much more energie and therefore improved walking ability and a better mood!

Negative changes since/while taking LDN? intensive but not negative dreams at night


Will you continue to take it? yes


--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Sun Mar 25, 2007 8:40 am

After 6 weeks of LDN 3,5mg my mother noticed an improvement in walking-balance, which she estimates to be about 30% better now :).
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby superman » Tue Mar 27, 2007 12:27 pm

After 3 months on LDN 4.5 mg I am definitely feeling the change:
3 months ago, after after having being on my bike for 30' I was hobbling, and as well had not much strength to pedal.
Now I can cycle 1 hour 30, and then walk without hobbling.
As well, my speed of walking has really improved and I go down the stars without always keeping a hand on the wall.
If things continue to improve at this pace, I could think about doing some new bike tours, as I used to do(2 Alpes' crossings) 8)
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Postby Loriyas » Mon Apr 09, 2007 7:53 am

Does anyone who is taking LDN notice an improvement in vision issues (if you were having any vision issues?)
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Postby Frank » Wed Apr 25, 2007 3:21 pm

Are you on LDN? Yes, now I'm taking it too
How long? 4 Weeks
How many mg's? started with 3mg. Since 2 weeks 4.5mg
When do you take it? 11:00pm

What kind of MS do you have (rrms, spms, ppms)? RRMS since 2002

Positive changes since/while taking LDN? improved balance, slight gait improvement, maybe some more energy (could also be due to spring)

Negative changes since/while taking LDN? vivid dreams at start. I had some problems when I went up to 4.5mg: Sweating at night, swingin mood, increased anxiety. But these went off after aprox. 10days.

Will you continue to take it? yes


--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby GabiK » Mon May 14, 2007 7:13 pm

Are you on LDN? YES!
How long? Dec 2005/18 months
How many mg's? 4,5mg
When do you take it? 11pm

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

Positive changes since/while taking LDN? No more weak legs, tingling feet, cold hands, Le'Hermite. More Energy! I feel the way I did before MS!

Negative changes since/while taking LDN? Lighter sleep between 3 am and 5 am.

Any relapses while on LDN? NO!!! :D

The million dollar question: Will you continue to take it? NO QUESTION!! YES!!!
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Postby TonyJegs » Tue May 15, 2007 10:14 am

It’s OK to use LDN for MS as for other chronic conditions.

However it will not protect you from new lesions or stop the progression of MS, but it could slower it down, which is a good thing. Naltrexone has no direct influence on immune system, neither on other major processes. It mimics MJ by mechanism of action; consider it as a great stress reducer.

Piece of advice for use LND in MS.
Stick to lower as possible doses, they will do the same. Start with 1-2 mg.
If you experience ‘vivid dreams’ then take it earlier, say 8-9pm would be fine, the effect will be the same.
Use ‘breaks’, esp. when you feel yourself well, in this way you will keep good receptors response for the drug longer. Breaks could be a few days in a row, don’t worry, it wouldn’t reduce your MS status. Otherwise, skip at least once or twice in a week, usual tactic for prolonged drug use (of similar effect, of course).
When you have a bad day then you could take it twice to cover 24 hours.

Don’t forget other rehab things which would improve your score by using better physical activity tolerance on LDN. Remember that LDN itself will not ‘fix’ MS, it is a symptomatic treatment.

Kind regards,
Tony
"All truth passes through three stages.
First it is ridiculed.
Second it is violently opposed.
Third it is accepted as being self-evident."
Schopenhauer
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Postby Frank » Wed May 16, 2007 11:45 am

Dear Tony,

thanks for your statement on LDN.
What does the abbreviation MJ stand for?
What leads you to the point that lower doses would have the same effect? Why do you think LDN does not have an effect on the immunesystem?

Regarding the mechanism of action I'd like to refer to this article:
linkl

In addition, increased levels of endorphins would also be expected to stimulate the immune system, promoting an overall increase in the numbers of T lymphocytes. This effect has been observed in Dr Bihari’s research. This increase in T-cell numbers apparently restores a more normal balance of the T-cells such that the effects of the disease process is reduced.


Additionally I'd also like to take Campaths sideeffect, autoimmun ITP, in regard, which is thought to be caused by an eradication of regulatory T-Cells.

Putting these two things together I think LDN does have a stregthening effect on ones immune system and (as the opposite of Campaths sideeffect) may have a substantial effect on the course of MS by restoring regulatory T-Cells.

Though there haven't been any scientificly relevant clinical trials for LDN in MS, you can read of many people (including myself) who had signifficant success with LDN, which can hardly be explained only with reduced stress levels.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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LDN

Postby TonyJegs » Wed May 16, 2007 1:24 pm

MJ states for marijuana.

The negative effect of stress, esp. chronic stress is underestimated all over again.
To explain this it would take a hundred pages, therefore it is not possible right now.
To learn more about stress start with H. Selye works, they are classic.

I have no intention (and time) to debate any picked article which suits someone believes.
What I try to do is to provide a clear view based on fundamental (means – unchangeable under any possible circumstances) laws.
If it contradicts with your view of the problem, well, it’s OK with me, because only bunch of people in the world understands the subject really well, others just try to understand.

Why low doses? MSers have constantly declining number (depletion) of any kind of receptors in the brain because of progressive neurodegeneration; even temporarily bond receptors have a chance to be shut down forever, then you got the opposite effect of the drug.

Kind regards,
Tony
"All truth passes through three stages.
First it is ridiculed.
Second it is violently opposed.
Third it is accepted as being self-evident."
Schopenhauer
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Postby mom10789 » Thu May 17, 2007 1:11 pm

wow tony do you take ldn i usually just read all the posts but i had to register there is nothing relaxing about ldn and i know the difference being a firm believer in mj and sativex ldn isn't for everyone but neither is anything else right for all msers but if it helps even one thing for each person is great i've never heard that ldn relieves stress now mj is another story
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