Experiences with Low Dose Naltrexone

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

Re: Experiences with Low Dose Naltrexone

Postby Danabnyc » Wed May 29, 2013 7:38 pm

I am new to this site so I am not sure if my reply got posted.
I had said I am also on the smaller side -- 5ft nothing and under 100 pounds.
I had planned to up my dose on the 10th day but now after reading about people responses to higher dosage I am not sure.
This is all so overwhelming.
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Re: Experiences with Low Dose Naltrexone

Postby Kronk » Fri Dec 13, 2013 8:09 pm

I have been on LDN about 7 months, I started at 3mg and jumped to 4.5mg after a month. I did not notice anything, much like taking a vitamin. I had 9 lesions when diagnosed in 2012 and 5 relapses in the 6 months that followed. I started Copaxone after the 4th and LDN after the 5th. I think i have had 1 relapse since I have been on LDN but it was incredibly minor, 2 of my toes on my left foot fell asleep for a week. My primary existing symptom of poor vision in my right eye was not improved by LDN. I did notice it changed a bit... not necessarily for the better, i got better acuity but the contrast dropped a bit. Due to its lack of side effects and the HUGE amount of beneficial anecdotal evidence I wouldn't go without it!
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Re: Experiences with Low Dose Naltrexone

Postby raceya » Sun Apr 06, 2014 7:21 pm

I've been on LDN for over a year now. I started at 1.5 and then increased to 3.0 after a week, then I increased to 4.5 after 10 days. I felt more spasticity on 4.5 and went back to 3.0 and I've been there ever since. No relapses, no attacks, occasional spins, but never escalates into anything. Picked up my prescription in January, only to find that my insurance had started covering half! Like wow!! That was an awesome day! So, I am continuing to take LDN with acidopholus (sp?). And living well.
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Re: Experiences with Low Dose Naltrexone

Postby Lynn62 » Thu Apr 10, 2014 10:37 am

raceya,
I am also taking LDN 3 mg. My doc started me at 3 and won't increase me "because of my weight". I am 5'4"and 111 lbs.

What problems did you notice when increasing from 3 to 4.5? I don't know if LDN is helping/hurting my leg stiffness. There has been no improvement there. I do sleep better, have vivid dreams and a better feeling of well being, more energy and less trips to the bathroom!

Glad your insurance is helping you pay,
Lynn

Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
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Re: Experiences with Low Dose Naltrexone

Postby wildguygoche » Sat Jun 07, 2014 11:45 pm

I've been on LDN and nothing else for two years. I forgot it for a week at the same time that I ate a ton of grains and dairy and that's been the only relapse I've had.

My diet is a version of paleo. I stay the hell away from all milk proteins and grain proteins. My suspicion is that these proteins trigger a cross-reacting immune response that alerts the CD4 white blood cells to mark all biologically similar proteins. In my body that happens to be myelin.

Back to the LDN. I take 3 mg each night and definitely notice it when I haven't taken it for a few days. I also bike 12 miles per day and eat for my health according to The Wahl's Protocol, Paleo, and what grows in my garden.
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Re: Experiences with Low Dose Naltrexone

Postby Azaeleaprawn » Sun Oct 26, 2014 5:53 pm

I started at 1.5 mg about 3 weeks ago and have just increased to 3 mg. Bladder urgency has gotten way better to the point that it isn't even an issue anymore and I've had an increase in energy, and somewhat better balance.
I have noticed a small increase in leg spasticity in the mornings but stretching seems to help with that.
Right now I plan on staying at 3mg because of stiffness issues.
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Re: Experiences with Low Dose Naltrexone

Postby annbbe » Sat Nov 01, 2014 6:21 am

Hi,
I started LDN four days ago, I've already taken three doses of 1,5 mg Naltrexone. I feel weaker than usual. Nothing new is bad with my neurology, but I simply don't have any force. My MS status is really bad. I am not waking outside at all, maybe on a wheelchair...but alone I can't walk, I have bad balance too . LDN is the only drug for MS I take. At the moment I have Relapsing SPMS, I've been ill for 14 years, I am 33. Any drug doesn't work for me. I was told to take 1,5 mg for 3 months. Nothing bad happens but I am exteremly weak and my balance is even worse...
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Re: Experiences with Low Dose Naltrexone

Postby NormB » Sun Nov 09, 2014 5:03 pm

Annbbe it is very normal when starting on Ldn that your body feels like it wants to revolt. Keep the course given by your md and eventually your symptoms will get better than before but it is very random as to how much time it will take. After 14 yrs with MS did your symptoms get worse recently other than the ones you cited? The reason I ask is after this length of time you may advance to secondary progressive phase but it is a very good thing you started Ldn as you will notice over time that progression will cease.
Please give it a chance for at least 6 months to a year and hopefully even further.
Ldn is my only drug for MS as well for the last 2 years and I still feel changes for the better very mildly as time goes by.
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: Experiences with Low Dose Naltrexone

Postby aplkwst1 » Sat Jan 09, 2016 8:54 pm

I have been taking LDN since 2012 and feel very good with it. I did not experience fatigue before and had very mild symptoms. Will continue with LDN until there is something that is worthy of taking to reduce disability in the future. I also took blood tests for allergies and found certain foods cause inflammation so have removed them from my diet. Overall, I feel good on LDN. It seems to have removed the electrical shock when I moved my head down the left side of my body and the warm water feeling I used to get.
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Re: Experiences with Low Dose Naltrexone

Postby stevecharlotte » Fri Oct 27, 2017 7:02 am

I am posting this because I have had suck great success with the above combo that I would love to see if others can benefit.

I have spent the last 10 years in a total coma. Simple task took 5x longer and I would just look out the window in a daze, all day. Simple tasks of remembering where I parked the car or what I had to do at work were getting worse and worse. My doctor blew me off for years saying stress and depression. Then the hand and feet tingling started along with a feeling of being squeezed. I didn't sleep for more than 2-3 hours per night for years. Combine this with the onset of extreme depression, anxiety and suicidal thoughts, I could not imagine why I would want to continue life with this bleak future. Last year they finally ordered the MRI and clear cut MS. I research my med options for 100s of hours and went against my doctor's insistence to go on some kind of beta interferon and chose Copaxone which had the least side effects. This gave me some lovely 3x bee bite welts for weeks at each location and made me feel about 15% better. I was starting to have extreme overheating issues to the point that even 10 minutes outside working was like 3 days in the desert. This was crippling as I could even exercise. I stopped going to all my workout classes and that only made things worse.

After almost passing out from heat exhaustion I did some extensive research to see if there was anything that could help with the overheating. I found a forum and read 100s of positive MS reviews on LDN- Low Dose Naltrexone. I emailed the doc that night and he immediately said try and sent in a prescription. Life just changed... Within weeks I felt so much better. My energy came back about 50%, I slept for 8hrs and most of the tingling went away. My overheating was nearly gone after 6 weeks and depression was lowest in 10 years. I kept researching and found a few posts saying that DLPA was a great add on to LDN. Life got even better, way better. I have been doing this combo and can't even remember when I felt better over the last 15 years. I feel absolutely amazing. Instead of crashing around 4pm everyday I am wide awake till 10pm and sleep like a rock. My work productivity has gone up 10x. I quite honestly still take Copaxone, but not religiously at all. Will probably quit after next MRI. Without even realizing it, on vacation I got sloppy with LDN and did see the clock rewind again and symptoms came back slightly. Always take it now.

Regimen - No gluten- low dairy, sugars, grains. Use only coconut and avocado oils. 3mg LDN at 9pm, lots of B vitamins in morning, 750mg of DLPA around 11am as it only works with B vitamins in system, ALA once a day, ceylon cinnamon used through week and lots of Omega 3.

Also, LDN supercharges your immune system. I was sick 80% of my life with sinus infections, Bronchitis once a year and everything else. I took antibiotics 3-4 times per year. I have not even had a sniffle in 9 months since starting.

I went from no hope to superman in 9 months.
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Re: Experiences with Low Dose Naltrexone

Postby Viper99 » Wed Nov 01, 2017 2:09 am

stevecharlotte wrote:I am posting this because I have had suck great success with the above combo that I would love to see if others can benefit.

I have spent the last 10 years in a total coma. Simple task took 5x longer and I would just look out the window in a daze, all day. Simple tasks of remembering where I parked the car or what I had to do at work were getting worse and worse. My doctor blew me off for years saying stress and depression. Then the hand and feet tingling started along with a feeling of being squeezed. I didn't sleep for more than 2-3 hours per night for years. Combine this with the onset of extreme depression, anxiety and suicidal thoughts, I could not imagine why I would want to continue life with this bleak future. Last year they finally ordered the MRI and clear cut MS. I research my med options for 100s of hours and went against my doctor's insistence to go on some kind of beta interferon and chose Copaxone which had the least side effects. This gave me some lovely 3x bee bite welts for weeks at each location and made me feel about 15% better. I was starting to have extreme overheating issues to the point that even 10 minutes outside working was like 3 days in the desert. This was crippling as I could even exercise. I stopped going to all my workout classes and that only made things worse.

After almost passing out from heat exhaustion I did some extensive research to see if there was anything that could help with the overheating. I found a forum and read 100s of positive MS reviews on LDN- Low Dose Naltrexone. I emailed the doc that night and he immediately said try and sent in a prescription. Life just changed... Within weeks I felt so much better. My energy came back about 50%, I slept for 8hrs and most of the tingling went away. My overheating was nearly gone after 6 weeks and depression was lowest in 10 years. I kept researching and found a few posts saying that DLPA was a great add on to LDN. Life got even better, way better. I have been doing this combo and can't even remember when I felt better over the last 15 years. I feel absolutely amazing. Instead of crashing around 4pm everyday I am wide awake till 10pm and sleep like a rock. My work productivity has gone up 10x. I quite honestly still take Copaxone, but not religiously at all. Will probably quit after next MRI. Without even realizing it, on vacation I got sloppy with LDN and did see the clock rewind again and symptoms came back slightly. Always take it now.

Regimen - No gluten- low dairy, sugars, grains. Use only coconut and avocado oils. 3mg LDN at 9pm, lots of B vitamins in morning, 750mg of DLPA around 11am as it only works with B vitamins in system, ALA once a day, ceylon cinnamon used through week and lots of Omega 3.

Also, LDN supercharges your immune system. I was sick 80% of my life with sinus infections, Bronchitis once a year and everything else. I took antibiotics 3-4 times per year. I have not even had a sniffle in 9 months since starting.

I went from no hope to superman in 9 months.


What type of ms do u have?
When are u diagnosed with ms?
I have different symptom,my hand and feet always feel cold
And im so stress with this condition
I have take ldn since 25june 2017
Ldn help to reduce tingling,pin n needle,fatigue,burning sensation,insomnia
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