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Anyone here on LDN or even heard of it? It is considered a 'voodoo' drug by most neuros and medical community - don't know why as it works and much better than any of the CRAB drugs.....I know I've been on them....Feel 100% better on LDN with no side effects, no relapses or progression AND shrinkage of lesions on MRI - would love to hear anyone else that is on it ??
How long have you been taking it Kelli? I am thinking of starting LDN, but there are mixed reports from the "studies" officially conducted. It is so good to hear it is working for you. What dosage are you on?
Hi Keli, I have been taking LDN since Sanuary this year with amazing results. No more incontinence, more energy, less fatigue, sensory symptoms are gone, I have a much better state of well being (no more depression), improved cognitive function, less spasticity and I am walking better than I have in years. I am Secondary Progressive MS, have chosen never to take any of the CRAB drugs and I did have difficulty getting LDN as Neuro's don't want to know and other medico's usually have never heard of LDN. Suggest any one who wants to know about it see www.lowdosenaltrexone.org and read as much as you can about it then make up your own mind if you want to try it. I went armed with information to my GP who wrote a script and then I had it made up by my local Compounding chemist. I started at 1.5mg and gradually increased it to the optimal dose of 4.5mg which I will take forever (or at least till they come up with a cure for MS). LDN is not a cure for MS but it has been shown to stop progression of MS whilst it continues to be taken and any reduction in symptoms should be considered a bonus. I also follow George J recommendations re diet, supplements and lifestyle tips which I also believe are very necessary to stay as well as possible when you have MS
Kelli, I just started LDN a week ago. Apart from insomnia I've had no side effects, and also no benefits I've noticed yet either. But I'm being careful and started on the lowest dose. And it's early days. I didn't bother even approaching my neuro because he's very conservative. But my GP is quite broadminded and wrote me a script after looking through some information I'd printed off the net. I can give you some links if you want. The nearest compounding chemist to me (far south coast of NSW) is in Canberra, about 250km away but they are willing to accept scripts by fax and post the capsules, so I guess you could deal with them wherever you live. They told me they do quite a lot of LDN. As Dianne said, there's a wealth of information on the net. Jen
Sorry Kelli, just read your post again and you're on it already, you know all that stuff!
Wow, I'm so excited I got replies about LDN & from people that know about it & are on it....to answer all questions - I've been on LDN for just over a year now - I'm on 3mg, I find I'm good at that dosage - I went up to 4.5mg but found I felt a little sluggish and slightly stiff so went back down to 3mg - everyone responds differently to either the 1.5-3 or 4.5mg - trial & error and as LDN is only in your system for less than 24 hours each time, it's easy to play with dosage day to day.....Renata - the studies done are few and far bwteeen as the medical community will not pay to research it for MS use - because it does not make THEM money....Doctors would rather keep you sick if it means they get their kickbacks and money from prescribing you drugs that have now been proved NOT to work....the MAIN thing to remember about LDN is that it CANNOT harm you - it's taken in such small dosages it couldn't even harm a baby....the only side effects are vivid dreams - and is that really a problem....I prefer the vivid dreams I had for 3 nights than the reactions I had from my Rebif shots...Dianne - well done on your post...spot on with everything you said and well done for having the courage to not use any of the CRAB drugs and give LDN a try and look at your list of improvements....Has your neuro tried to tell you it's all in your mind that you're getting and feeling better because it's a placebo affect...?? I have a fantastic compunding pharmacy near me who has my script on permanent file now - they make a lot of LDN for many patients - MS, Parkinsons, Autism, etc... I'm with you Dianne - until they find a cure for MS, LDN is my Best friend and always will be.....
Hi Ladies - thanks for this thread. i have not tried this drug but will be heading to my neuro in the next month or so to get a repeat of copaxone so will ask him about it then. Is there any reason why they might not perscribe it that you are aware of? Thnks Lauren
Hi Lauren, I would suggest you head to the LDN website(www.lowdosenaltrexone.org ) and print off some information for your neuro - he or she would definitely know of LDN but if like many, will tell you it's all mumbo jumbo and there have not been enough studies done to give it to you....Copaxone is the ONLY CRAB drug that can be taken along with LDN so in actual fact your neuro should have no reason to deny prescribing it to you....As the LDN boosts the immune system and promotes the healing of the areas scarred by MS, it 100% contradicts what the CRAB drugs do - Suppress the immune system but for some reason Copaxone does NOT suppress but assists in boosting it...Go figure Who knows !!! Bottom line, you do not need your neuros permission to take LDN - you just need to find a local doc who prescribes it - what area are you in - I have a list within Australia....
Lauren, doctors usually rely on clinical trials when deciding whether or not to prescribe a drug. There have not been any large-scale trials of LDN, and probably never will be, because clinical trials are expensive to run and no drug company will ever get a return for their investment because naltrexone is past its patent and is now a generic drug, ie any little drug company can make it and sell it. It's sad, but that's how the system works. Maybe I'm cynical, but I imagine that the big drug companies, eg the ones that manufacture and market the CRAB drugs, are actively discouraging independent studies into LDN in MS, because it threatens their market. And anyone who wants to try LDN has to stop taking Avonex or Betaferon. That's why you might have more luck with your GP than your neurologist. I recommend a really good round-up for doctors here: http://www.gazorpa.com/LDNFAQ.html It's brief, sensible, well-researched and well-written, and it was enough to convince my GP. Good luck!
Well said Jen - I agree completely....it sounds Horrible to say but many docs are in the Business of keeping people sick if it makes them money by prescribing drugs that give them kick backs.....and you know what, they are NOT the ones with the condition so have no right to deter anyone against any drug, be it alternative or not....I heard someone say that if a neurologist or anyone on the Gov't had themselves been diagnosed with MS or anyone in their family, you'd see them very quickly look into LDN and research & give it the time of day.....Food for thought....
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