This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all being new to this forum i would like to ask anybody that has had any major side effects from LDN i have not long learned about this wonderful drug but all the information i have found is positive(which is a good thing) but there must be something bad!!!!!!!I have read the minor ones - restless nights(i can live with that) vivid dreams(no big deal) i am going to my neuro in a few weeks and want to be well informed so anything will help thanx

Hi karbren from Oz, a pom here thats been on LDN 3mg for just over a year and have no intention of stopping. I was dx PPMS in 1995 and find that LDN has helped me in more than one way.......pains in my legs are now only a memory, good in just that but also I no longer need to go to the bathroom about 6 times through the night, now it's only once depending what late drink I have had the night before, I also think that my PPMS has not gottern any worse although I still need to use 2 walking sticks to get around.
Don't know what kind of MS you have but with PPMS I was told that there is NO drug the Neuro can give me so I had to get this drug after alot of letters to people in power, government. which did the trick.

Good luck to you in your quest....Andy

Hi Andy
thanx for the response. I was initially Rx with rrms but as i am slowly going down hill i think that may have changed. after all i have read i can see no reasons but good one to give it a try. so i think iwll go for it

I see you are in Australia...you might try calling Roper & Parry's Pharmacy in Lismore. I know for a fact that they are compounding LDN there. They just might have the name of a doctor in your area. Their number is #02 6621 4000. Good luck to you. I think that Dr. Bihari has been using LDN for over 15 years. Not sure there are any side effects at such a low dose. I know that sounds unbelievable doesn't it? I, myself have been on it for just over 3 years now and loving it.

Hi JoyceF
thanx for the response. I am searching high and low for some negativity on LDN but to no avail so i have come to the conclusion that there must not be any Im pleased to hear that you are happy with it. Thanx for the useful info i'll keep you posted. im so excited that there might be something that can improve my quality of life

Hi Karbren,

I did about 6 months of research before I started on LDN. I did hear some negatives along the way, including:

- side effects during the first one to two weeks; nausea, slight fever, vivid dreams, insomnia, dry mouth
- some people quit early on because they did not see immediate improvement (it can take 7 - 9 months to see the full benefit)
- not everyone experiences as drastic improvement as others, but everyone that perservered definitely saw some amount of improvement
- some people have just stuck with the original dosage they were prescribed, i.e. 3.0mg, and did not try the optimal LDN dosage of 4.5mg
- some tried, but can not tolerate a 4.5mg dosage (usually men)
- not everyone has used the correct filler, i.e. wasn't fast-release
- not all pharmacists are skilled at compounding properly
- the taste, when used as a liquid
- not to be combined with codeine or narcotics
- trying to find information on what to do when going for surgery, etc.

Many of the above negatives were fairly isolated incidents, and/or often as a result of not obtaining the prescription from an experienced & reputable LDN pharmacist.

I was required to prepare a "Risk Assessment" paper for my doctor, before he would give me the prescription . . . so I went through the same process as you are at the moment. Attached is a posting that I did on another site, and you can access the "Risk Assessment" paper/info by reviewing my post and clicking on that document (doctor's LETTER link).

http://www.spotlighthealth.com/common/S ... 0diagnosed

I have been on LDN since May 20/05, and I feel fantastic. No more spasticity pain, fatigue, bladder/bowel problems, etc. I hope it works as well for you!!!

Cherie

Hi cherie
Thanx for the interesting info and links the more info i can gather the better. i didnt realize that you cant take codine!! why?? I can handle the side effects the seem small compared to the possible outcome

Hi karbren.

Codeine is an opioid derivative. Using it along with LDN will make it not work for you, at least for as long as your opioid receptors are blocked because of the presence of naltrexone.

This is the reason that you should not take any opioids with LDN. They will have no effect.

Stavros

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If God created MS, Devil would create Rebif to treat it!

Hi,

I tried LDN in 4.5mg a couple of months ago and immediately had greater difficulty walking which went when I stopped taking it. I believe that this side-effect is mentioned on the LDN.org website and that reducing the amount to 3mg might improve the outcome. I then started taking antibiotics which aren't doing me much good either!! Good luck!

Hi Starvos
thanx for that info so do things like panadol and nurofen still work if no what do u take for pain?? I like your footnote how true

Hi gibbledygook
sorry to hear that it didnt work. are you going to try the 3mg? the antibiotics arnt fot ms r they

Karbren, of course they are, unless I am imagining the fact of my recovery!

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Karbren,

I'd recommend you look at the antibiotics section under the regimens bit of this website as many people are having good results with these especially Anecdote who had secondary progressive and is now recovering. I've only just started the antibiotics (well, 5 months but expect 8 months before improvements) so haven't yet seen good results with it. I'm going to try LDN again as I bought the pills at vast expense and it seems like I'm the only one who hasn't seen good results with LDN and I only tried it for a week. I think it takes time to settle if one experiences greater spasticity on LDN. I think perseverence is key with both LDN and antibiotics. At least I hope! Onwards through the fog!

Hi
I had never heard of antibiotics for ms but i will be looking into that one too.Perserverence does seem to be the key so ill bear that in mind when start. maybe the fog will clear to a nice sunny day for everybody(soon)

I started at 1 1/2 mg of LDN with avacil filler...up to 3mg...the spasticity is so bad and so painful I think I could just die. No benefit yet, been on it for about 2 1/2 months. Spasticity increased from the onset of the drug. Still waiting for that "transient" but it hasn't came yet.

Wow, I have not seen any adverse effect from the LDN and have been on it for 10 years at 4.5mg. Where are you getting your LDN from?