Discussion Topic
ldn as first and only med anyone?
Posted on 03/19/09, 08:47 am
Outside of some bladder issues which have steadily been improving, I have no outwardly visible nor any functional deficits due to my RRMS. My first sign of MS was optic neuritis which came on suddenly but steadily improved over some weeks. I thought the vision issue was just due to my age so blew it off. I then had some mild sensory deficit on my thighs but it too went away and I dismissed it to a pinched nerve. Then, about two years after these episodes, I had a bad relapse that came on slowly but resulted in my not being able to walk without assistance, the loss of my right limb, and a mild deficit of sensory ability on the right half of my body. All this was restored to normal with IV steroids and apart from some ever improving bladder issues, I have no symptoms of MS at all (apart from the MRI evidence and CSF test). I have never taken any of the ms meds whatsoever. I had been following a modified Best Bet Diet strictly for two years but have let up some as of late with no deleterious consequences. I was wondering if there is anyone out there whose sole medication for their RRMS has never been anything but LDN (apart from dietary supplements) and if they started it before they were experiencing serious neurological deficits. I talked to one doctor about it and though he didn't seem opposed to the idea, because I am doing so well he didn't think LDN was necessary at this point. I haven't seen anything regarding the benefits of LDN physiologically (reduction or cessation of lesions for example) but I am still looking into it. It seems there is definite proof that it improves symptoms so I would imagine it would have to be doing something to improve the cause physiologically. Bottom line is, I am wondering if it would be to my advantage health wise to go ahead and start on the LDN despite my current state of wellness regarding the illness. Any thoughts?
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Reply #11 03/26/09 10:15am
LDN was my first and only med for ms. I was diagnosed in 06' and started LDN in 07'. I just had an appointment with my neurologist yesterday and he fell short of calling my ms benign and said that was unusual for someone who had spinal lesions. He said I'm much better than I was 3 yrs ago. However, he would not give LDN any credit for it. I'm just glad he keeps renewing my script for it. I have been skeptical of LDN from the beginning, but I think it is making a difference and my husband says he knows it is. -
Reply #12 03/26/09 12:15pm
I take my husbands word over a dr's any day. He lives with me and he sees how I walk everyday. He always tells me if he sees I'm not doing well that day. I've only been on LDN for a week, and he sees the results. Awesome! -
Reply #13 03/27/09 12:00am
rashamel, I'm happy to hear that you are already seeing an improvement. I hope it keeps getting better for you. -
Reply #14 05/27/09 6:21am
Hi Carolline :D
I have been taking liquid LDN 3ml now for a year. It is the only med I have ever taken for m.s.
I also take supplements, and Probiotics every 3 months for 1 month for my tummy.
My fatigue is vastly improved since LDN and I sleep through the night without the 4 times a night pee stop, which for me not only meant getting up, it also meant having to go down a flight of stairs to the bathroom lol fighting the doberman on the way!!!
I was dx 02 and had ON for 2 months and loss of left side. I am ever eternally greatful that the neuro I saw didn't treat with steroids and liked to see how my recovery went. I got better on my own and no lasting damage to my left eye.
I love taking the LDN!!! I look forward to it as I know in the morning I'm going to feel 'human' and it has helped my constitution aswell as my monthly lady stuff and my skin looks clear!!!!
LarryLDN helped me over here in little Britain to get to the right contact btw, and for that I thank him every time I visit here :D
Sending The Bestest of Wishes
B. xxx
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Reply #15 06/12/09 4:00pm
Thanks for all the great advice! I do not live in the States and am trying to get my doc here to prescribe it. I feel like she will be cooperative. I have left the information packet Larry recommended for docs and will be making an appointment with her next week to further discuss it. My concern is: Will I be able to get my new doc in the States once I move back, to continue prescribing it for me? I sure hope so. I have had issue with extreme fatigue lately and really need this stuff. My old methods for dealing with this fatigue have not been successful as of late. -
Reply #16 06/13/09 2:58am
well ya know several people who are healthy take ldn to stay that way!--like skip--and even tho you are doing well--you have ms--i had very few --real problems--dx in 2001--with my ms--until nov 2008-then bam woke up one morning and everything was messed up--i wish i had been on ldn--and maybe it would not have happened--and yes since day 1 of my dx--i was on crab drugs--avonex and rebif--my ms was almost beningn--it hit me overnight after almost 9 years--you are never promised tomorro--so becareful!
and another thought as great as ldn is--symptom improval is only a bonus--it is only meant to prevent relapses -
Reply #17 06/13/09 3:07am
so get on it now before you have permanent damage-as i am begining to wonder if mine is--my daughter insists my script is written by a local dr--but you can get it script free from river pharmacy in canada--or there are a few drs --who will write you a script with phone consultatios--so yes-you will be ale to get in the usa--with or without a dr--do it now! -
Reply #18 06/13/09 12:48pm
You may find this recent journal article abstract helpful in deciding whether prophylactic dosing is helpful. Although I have not read the whole article just this abstract it sounds very positive. I have written to the author requesting a full copy and will post it on http://groups. yahoo .com/group/LDN_Information in the Files section under Articles if I am able to obtain it.
Garnet
Med Hypotheses. 2009 Mar;72(3):333-7.
Epub 2008 Nov 28. Links
Low-dose naltrexone for disease prevention and quality of life.
Brown N, Panksepp J.
Department of Humanities and Social Sciences, Embry-Riddle Aeronautical University, Daytona Beach, FL 32114, United States. NPHbrown@aol.com
The use of low-dose naltrexone (LDN) for the treatment and prophylaxis of various bodily disorders is discussed. Accumulating evidence suggests that LDN can promote health supporting immune-modulation which may reduce various oncogenic and inflammatory autoimmune processes.
Since LDN can upregulate endogenous opioid activity, it may also have a role in promoting stress resilience, exercise, social bonding, and emotional well-being, as well as amelioration of psychiatric problems such a autism and depression.
It is proposed that LDN can be used effectively as a buffer for a large variety of bodily and mental ailments through its ability to beneficially modulate both the immune system and the brain neurochemistries that regulate positive affect. -
Reply #19 06/13/09 12:54pm
You can also order the 50 mg tablets from www. alldaychemist .com in India for about 35% less than River Pharmacy charges. Both are reliable sources and both ship from India. Many people use ADC and are very happy with their service. It takes about 2 weeks from either of them. ADC says on their site that you need an Rx but that is a CYA -- you do not an Rx. -
Reply #20 07/06/09 7:53am
The only med that I take for my RRMS is LDN & I've never done steroids over my 20 plus yr. MS quest. I do get a B12 injections weeekly & have for a very long time. Benefits myelin & nervous system overall.
I do take many supplements & follow a very carefull diet which limits
gluten & saturated fat.
Coffee & chocolate don't seem to bother me at all. YEAH!
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LDN .. Low Dose Naltrexone 3.0 MG or 4.5 MG ...... Helps ALL AutoImmune diseases not just MS
