Your experience with LDN

[AshNight]

Has anyone ever tried it? Have you had any success?

[AshNight]

Anyone . . . ?

[daisy.girl]

HI...
I was dx in Jan 2010, I decided against a DMD and started LDN in March 2010. In October I had a repeat MRI that showed an additional 5 lesions on my brain.

So, in my situation in did nothing for me.

My neuro, in the beginning was encouraged with some of the research being done with LDN....but in Dec of 2010, he told me that the newest research was not showing good result in using LDN with MS patients.

Hope that helps....I was so wishing that it worked!! Have you started it yet??

[AshNight]

HI...
I was dx in Jan 2010, I decided against a DMD and started LDN in March 2010. In October I had a repeat MRI that showed an additional 5 lesions on my brain.

So, in my situation in did nothing for me.

My neuro, in the beginning was encouraged with some of the research being done with LDN....but in Dec of 2010, he told me that the newest research was not showing good result in using LDN with MS patients.

Hope that helps....I was so wishing that it worked!! Have you started it yet??

Have not used it yet, just got diagnosed and trying to look up alternatives. Maybe you needed a stronger dose of LDN? Im just sick of the FDA and big pharma companies not putting force behind research for an actual cure or alternative medicine. Too much money being made from these big drugs thats why

[opiegirl]

Have not used it yet, just got diagnosed and trying to look up alternatives. Maybe you needed a stronger dose of LDN? Im just sick of the FDA and big pharma companies not putting force behind research for an actual cure or alternative medicine. Too much money being made from these big drugs thats why

I agree with you Ash. I feel like the pharmaceuticals are controlling everything. I am going to look into LDN too. I go back to the MS specialist on May 2nd. Have my list of questions to ask.

[mirey45]

Has anyone ever tried it? Have you had any success?

Ashnight, my DW was finally DX with the form of MS called MS Dementia in 2009 after dealing with it for the last 20 years of knowing something with her MS was "off".

We finally ( after a LOT of looking ) found a Dr. who wrote LDN 3.0 for her. She has been on it for about a year now with FANTASTIC success. Her mind is clearing, fatigue last summer was next to nothing.

This drug has a lot up up side to it, and very little if any side effects. I would say to you if you can find a Dr. to prescribe it for you GO FOR IT. Just remember the "idea" behind it is that it halts progression. Some say that it will help the brain lesions, that I'm not sure of yet DW is getting a MRI soon to compare from last time before this drug.

Just keep trying to find what works for you AshNight, "Don't give up, don't ever give up."

Good Luck

[knuckle]

"My neuro, in the beginning was encouraged with some of the research being done with LDN....but in Dec of 2010, he told me that the newest research was not showing good result in using LDN with MS patients."

What research was this?

Outside of a small eight week, participant-funded trial at UCSF, I'm unaware of any study or research done in the US using LDN with MS patients.

1,000s of MS patients take LDN and report positive results. Plenty of neuros prescribe it (mine does) as well as other doctors.

Naltrexone is FDA-approved, it's totally non-toxic, and in it's low dose form, is simply being used off-label to treat MS - like so many other drugs.

If you go to www.LDNaware.org - on the "Resources" page, at the bottom, there is a "LDN Doctor Letter" that should help with getting a prescription from a doctor who is unfamiliar with LDN.

Also, on the USA page, at the bottom, there is a link to find Compounding Pharmacies that provide LDN.

Finally, if you go to www.LDNdatabase.com and click on the "Multiple Sclerosis" page there are 200+ user reports which are worth reading.

[BeBe]

I have been on 4.5mg of LDN for 6 1/2 years, no problem and I feel good. You can have sleep disturbances in the beginning, but it goes away. I started at a lower dose 3mg, then doc put me to the recommended max dose.

I take a lot of supplements to help too.

I read where they did 2 MS autopsies, the first one's only problem was a leg that had a limp and her brain was full of lesions. The other person was pretty bad w/MS and her autopsy showed very little in the way lesions. Lesions can come an go, and they don't have anything to do with disability, hence my leeryness of doing a DMD.

[AshNight]

Ashnight, my DW was finally DX with the form of MS called MS Dementia in 2009 after dealing with it for the last 20 years of knowing something with her MS was "off".

We finally ( after a LOT of looking ) found a Dr. who wrote LDN 3.0 for her. She has been on it for about a year now with FANTASTIC success. Her mind is clearing, fatigue last summer was next to nothing.

This drug has a lot up up side to it, and very little if any side effects. I would say to you if you can find a Dr. to prescribe it for you GO FOR IT. Just remember the "idea" behind it is that it halts progression. Some say that it will help the brain lesions, that I'm not sure of yet DW is getting a MRI soon to compare from last time before this drug.

Just keep trying to find what works for you AshNight, "Don't give up, don't ever give up."

Good Luck

Thats what I am doing, I'm trying to find out what works for me. As someone newly diagnosed it is so scary and nerve racking because none of the info im coming across is comofrting. Its all "ifs", "ands" or "buts". I know this disease is individual to everyone but there has to be some way to figure out where this is going for a 23 yr old girl with sensory symptoms? BTW what is a D lol? and PLEASE let me know how her MRI went. Thank you!

[AshNight]

"My neuro, in the beginning was encouraged with some of the research being done with LDN....but in Dec of 2010, he told me that the newest research was not showing good result in using LDN with MS patients."

What research was this?

Outside of a small eight week, participant-funded trial at UCSF, I'm unaware of any study or research done in the US using LDN with MS patients.

1,000s of MS patients take LDN and report positive results. Plenty of neuros prescribe it (mine does) as well as other doctors.

Naltrexone is FDA-approved, it's totally non-toxic, and in it's low dose form, is simply being used off-label to treat MS - like so many other drugs.

If you go to www.LDNaware.org - on the "Resources" page, at the bottom, there is a "LDN Doctor Letter" that should help with getting a prescription from a doctor who is unfamiliar with LDN.

Also, on the USA page, at the bottom, there is a link to find Compounding Pharmacies that provide LDN.

Finally, if you go to www.LDNdatabase.com and click on the "Multiple Sclerosis" page there are 200+ user reports which are worth reading.

I gotta ask, have you ever used LDN

[AshNight]

I have been on 4.5mg of LDN for 6 1/2 years, no problem and I feel good. You can have sleep disturbances in the beginning, but it goes away. I started at a lower dose 3mg, then doc put me to the recommended max dose.

I take a lot of supplements to help too.

I read where they did 2 MS autopsies, the first one's only problem was a leg that had a limp and her brain was full of lesions. The other person was pretty bad w/MS and her autopsy showed very little in the way lesions. Lesions can come an go, and they don't have anything to do with disability, hence my leeryness of doing a DMD.

How do you got about figuring which dose is right for you? Does your body respond in a certain manner? Were you on other meds before the LDN? And kindly let me know which supplements you are using!

[knuckle]

AshNight,

I've been taking LDN now for three years.

I was diagnosed with MS in 1991. I've taken Avonex, Rebif, Copaxone, Novantrone (3x) and Tysabri (18x).

Along with 4.5mg LDN at bedtime, I also take 10mg 4AP three times daily, about 50mg Baclofen, and the following supplements:

Curcumin
Alpha Lipoic Acid
Magnesium
Vitamin D
B-complex
Fish Oil
Flax Oil

My wife takes LDN for Crohn's Disease. My 85 year old father takes LDN Progressive Nuclear Suprapalsy.

If I could give just one piece of advice to someone newly diagnosed with MS it would be this:

Try LDN first before any of the CRABs. Give LDN 6-9 months and see how you feel. If you are stable, stick with it. All LDN has to be is 30-40% effective at slowing progression and it is the superior treatment in terms of administration and cost. User experiences and surveys point to that it is.

Do not wait to try LDN until you have exhausted all other options and have accumulated permanent disability (like me).

Do not expect your neurologist to know anything meaningful about LDN. Do not expect there ever to be an FDA-approved clinical trial proving LDN efficacy as there is no money to be made from the drug. Do not expect the NMSS to ever support LDN research.

More MS patients now have taken LDN for many years and reported good results than the original clinical studies done with the CRABs well over a decade ago. Personally, I trust user experiences more than pharmaceutical company sponsored trials.

I've done really well on LDN now for three years. Little if any progression of existing symptoms, no new ones. LDN eliminated all MS-fatigue. Less spasticity. My eyesight is now fine (used to have some optic neuritis). No problems whatsoever with thinking or speech. I have never caught a cold since starting LDN and neither has my wife.

Some of this may be from my supplement regimen as well. Whatever, I am definitely doing better than I was while on any of the FDA-approved MS drugs, feel better that I am not compromising my immune system, and have saved buckets of money.

I'll never stop taking LDN (or any of these supplements) and just wish I'd started earlier.

[AshNight]

AshNight,

I've been taking LDN now for three years.

I was diagnosed with MS in 1991. I've taken Avonex, Rebif, Copaxone, Novantrone (3x) and Tysabri (18x).

Along with 4.5mg LDN at bedtime, I also take 10mg 4AP three times daily, about 50mg Baclofen, and the following supplements:

Curcumin
Alpha Lipoic Acid
Magnesium
Vitamin D
B-complex
Fish Oil
Flax Oil

My wife takes LDN for Crohn's Disease. My 85 year old father takes LDN Progressive Nuclear Suprapalsy.

If I could give just one piece of advice to someone newly diagnosed with MS it would be this:

Try LDN first before any of the CRABs. Give LDN 6-9 months and see how you feel. If you are stable, stick with it. All LDN has to be is 30-40% effective at slowing progression and it is the superior treatment in terms of administration and cost. User experiences and surveys point to that it is.

Do not wait to try LDN until you have exhausted all other options and have accumulated permanent disability (like me).

Do not expect your neurologist to know anything meaningful about LDN. Do not expect there ever to be an FDA-approved clinical trial proving LDN efficacy as there is no money to be made from the drug. Do not expect the NMSS to ever support LDN research.

More MS patients now have taken LDN for many years and reported good results than the original clinical studies done with the CRABs well over a decade ago. Personally, I trust user experiences more than pharmaceutical company sponsored trials.

I've done really well on LDN now for three years. Little if any progression of existing symptoms, no new ones. LDN eliminated all MS-fatigue. Less spasticity. My eyesight is now fine (used to have some optic neuritis). No problems whatsoever with thinking or speech. I have never caught a cold since starting LDN and neither has my wife.

Some of this may be from my supplement regimen as well. Whatever, I am definitely doing better than I was while on any of the FDA-approved MS drugs, feel better that I am not compromising my immune system, and have saved buckets of money.

I'll never stop taking LDN (or any of these supplements) and just wish I'd started earlier.

What is 4AP? Is balfocen for pain? My neuro just recommended rebiff and said its strong and to take that. Homestly I dont know what these DMDs are supposed to help with? Lesions? Symptoms? But even with or without lesions the disease progresses, so what gives? I definitely want to try LDN because Ive heard great things about it, just need someone to prescribe it. really dont like my neuro he was so vague about everything. What do you reckon about the aurvedic/homeopathic meds? I researched all the supplements you listed and will definitely be using them. So you're not on a DMD right now? How will I know the LDN is working, does it help alleviate mild symptoms? Also you said you were diagnosed 1991, but how long have you had this disease and what is your age group? Thank you so much for all this great info!

[AshNight]

Also is LDN in pill form or powder or what?

[Sequoia]

Also is LDN in pill form or powder or what?

LDN has to be prepared for you at a compounding pharmacy (local or online). It commonly comes in capsules.

You can also request it in a liquid form. A wide variety of flavors can be added by your pharmacist.