Experiences with Low Dose Naltrexone

SandyK · Family Elder Joined: Oct 15, 2009 Posts: 189 Location: WA

Tonight will be my first full week. I have noticed that I have warmth in my right foot.

Mutley · Posted: Thu Nov 19, 2009 6:55 am Post subject:

LDN definitely helps my irritable/urgent bladder. I had hoped it would do more but just reducing my bladder problems is a massive thing. At night I would always go to the toilet at least 5 times a night, and 10 times a night was quite common. But now it’s usually just once or twice, and occasionally not at all.

I think that getting the dose right is key though. For me it was the sort of thing I had to build up slowly and my preferred dose is now 3.5ml (3.5mg) per night. If I take too much I noticed that my mobility suffered a bit and I felt more tired than normal.

The research I did at the time also suggested that you are better off taking it in liquid form as some of the filler material used in the tablet forms wasn’t always up to scratch.

I originally got my script via e-med (www.e-med.co.uk) and the drug from Dicksons Pharmacy in Glasgow UK, but now that my GP has heard about my results she now does the script for me bless her.

Hope this helps and good luck to everyone!
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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

SandyK · Family Elder Joined: Oct 15, 2009 Posts: 189 Location: WA

This will be my 16th pill tonight. I'm not even having the experience of dreams. After I finish this bottle of 3 mg I am going to 4.5 mg. I will keep using it, but after all I've read from people seeing changes right away it is kind of a downer to think it may not help me.

TvG · Posted: Fri Nov 20, 2009 2:36 am Post subject:

I'm over 6 weeks on 3mg LDN now and still notice more energy (better dreams) but unfortunately also much more stiffness/spasticity every week.
It's a hard decision to change/lower dose or quit completely.

Are there more people with PP with increased symptoms after 1.5 month, continued and now are glad they did?

Mutley · Posted: Fri Nov 20, 2009 3:49 am Post subject:

Apparently men don’t tolerate the higher doses as well as women do and some say that 3.5mg is the top end for men. I think it’s a trial and error thing really. It took me about 3 months before I cracked it.
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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Aaron · Getting to Know You... Joined: Jan 18, 2005 Posts: 16

Hi,

I thought that I would chime in. I have been takin LDN since October. I started with 1mg capsules and felt stronger than I have felt in a long time. Very Happy

I then assumed that more would be better, and had my neuro prescribe me 3mg, in liquid form. Since taking the 3mg, I have found myself regressing. Mad

I just ordered another batch of 1 mg capsules, so we'll see if that brings me back to where I was.

I was looking forward to the vivid dreams, but I haven't experienced them.

By the way, when I asked my doc, (Dr. Calkwood in Mpls), for a script, he was leary about its effectivenes, but he said, "Well it can't hurt you," and wrote it up.

As long as there is a compounding pharmacy near you, there shouldn't be any problem getting it.

leetz · Family Elder Joined: Oct 07, 2009 Posts: 114

TOOK LDN FOR APROX.6-8 MONTHS....THE ONLY IMPROVEMENT THAT I HAD WAS LESS PAIN LEVEL.......TRIED ALL MG RANGES FROM 1.5-4.5MG..

Loobie · Posted: Wed Dec 02, 2009 11:51 am Post subject:

Hey Ton,

Apparently, an initial increase in spasticity is not uncommon.

Here's my experience:

DON'T TAKE IT DURING THE DAY.

I won't do that again. Made me feel like shit every afternoon. After talking with the man Skip, I have restarted in the evening again and it's much better. Still waking occasionally at 4:00 or 4:30, but amazingly don't feel unrested (I get up at 6:00 anyway). So far I like it.

SandyK · Family Elder Joined: Oct 15, 2009 Posts: 189 Location: WA

Last night I went from 3 mg to 4.5 mg. I'm still not having any dreams or noticing anything different. It has been a month. I will finish this month and than probably stop. Why pay for something that isn't helping?

tzootsi · Family Elder Joined: Nov 23, 2009 Posts: 169

One month is not nearly enough time. LDN takes 3 months to really start kicking up the endorphins. Also, for most people, LDN's biggest benefit is no progression, not overnight improvements. I would definitely keep it up if I were you. It's very inexpensive, and pretty harmless. Have you watched any of Skip Lenz's LDN lectures on youtube?

ErikaSlovakia · Posted: Fri Dec 04, 2009 2:29 pm Post subject:

I have been on LDN since November 2008. I had 2 relapses in 2008 in 2007 as well.
I had really big problem with fatigue in 2008.
My symptoms were even stronger the first day with LDN. I was starting to get better - to have more energy since the second day. My fatigue was getting better.
I was taking 3mg the first 14 days and after 4,5 mg always after 9 pm. I have not had any strange dreams.
I am VERY happy with LDN.
I do not plan to stop that soon.
No relapse since I started with LDN - it means for a year.
I order it via e-med as well.
No way I can get it in my country Crying or Very sad

I have never been on any DMDs.
Erika
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LUCKY GIRL, Aug. 7, 09 Doppler Ultras. made by Dr. Simka in Poland, left Jugularis valve problem, RRMS since 1996, EDSS 5,5, Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, IBT-for 3 months, never on DMDs

SandyK · Family Elder Joined: Oct 15, 2009 Posts: 189 Location: WA

Going on month 3 and still changes.
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Diagnosed 1994, Self EDSS is 6.5

Algis · Posted: Tue Jan 05, 2010 1:27 am Post subject:

LDN is the best thing I ever had for my MS.
It took maybe more than 3 months for me to notice, but I mostly see the difference if I miss a day - I feel much weaker and I need at least 2 more days to recover...
Very cheap and no any side effects; so it is a yes (for me). But everyone is different.

Good luck! Very Happy

SandyK · Family Elder Joined: Oct 15, 2009 Posts: 189 Location: WA

My post should have said no changes. No dreams, no insomnia, and not feeling any better. I'm not feeling worse!

ariehs · Posted: Tue Jan 12, 2010 7:57 am Post subject:

I started taking LDNs when I was first diagnosed - within a few weeks. I didn't notice any change (an occasional dream, that's it) but I kept taking the pills, as there seemed no harm in them.
I never went on any of the CRABs medications, as I wasn't diagnosed in the same country as where I lived, and finding a local doctor took a long time. By the time I did, I was waiting for a stem cell treatment.
After the treatment, I stopped taking the LDNs. It seemed silly. Now, I will note at this point that it takes 6 weeks or more for results from a stem cell treatment to start to show.
In two weeks my spasming increased from a rare event to a constant problem, and I started falling so often while walking that I reluctantly bought a walking stick to keep on me.
Once I realized that this might be a change because I stopped talking the LDN pills, I started again. In days my spasming was down to even less than it had been before, and while I am still carrying the walking stick with me, my legs seem to be as reliable as they were before the infusion.

I didn't realize how much the LDN was doing for me. Where I thought it was just doing no harm, I now know that it was helping me significantly.