Updated: Dec 31, 2004
Please Note: In publishing this selected list of excerpted comments, which were e-mailed to this website or to the LDN Discussion Group, we have made every effort to keep all names, e-mail addresses, and other personal identifiers obscured (using the symbol "~" when necessary), with the occasional exception of named physicians and pharmacies.
Date: Thu, 4 Mar 2004 22:30:56 EST
Subject: Re: Re: Reply
My letter to montel, sorry its long...
Dear Mr. Williams,
I write to you about a very important drug that may stop the progression of
MS. It also has improved the life of many of us living with MS. My GP didn't
know about it, my neurologist didn't either. I only got them to prescribe it to
me by asking them to find what harm it could do to try it. They found no harm
in it and I have been on it one month. The drug is called LDN standing for
Low Dose Naltrexone. LDN is a FDA approved drug at a 50 mg dose, for MS I take
4.5 mgs, less than one-tenth. This is not the first drug to be used "off
label" they do it for cancer patients a lot.
I won't speak for others but allow me to tell you what happened to me. I was
on a cane and considering getting one of those four footted ones, I was
leaning on it so heavy. The MS fatigue was killing me, all I could do was sit in my
easy chair the whole day long. I was losing bladder control which was very
upsetting being potty trained for some time. I was taking the drug rebif and
spiraling into a depression like I had never felt. Every day I woke to new
symptoms. Frankly I was frightened, if this is what MS was about I didn't know if I
could do it. I started the LDN and I really thought it was my imagination, but
after only five days I had to admit I didn't have that active of an
imagination, I was feeling better! I sat down my cane and I ran down the steps to my
house. I walked so much that day I made my legs sore. I had better bladder
control, I had more energy I felt stronger! Now I still felt like I had MS but it
was so much easier to deal with. Now after a month the pins and needles have
vanished, the cramps in my feet, legs and arms are gone.
The Low Dose Naltrexone Homepage that is the link, I will be the first one to say it reads like an ad, but there is no money in it. The drug is safe and cheap, There are no double blind clinical studies for that very reason. The patent has expired, the drug company cannot make any money on it so who would sponsor an expensive trial? Now I did not stop with this homepage, I went and joined a yahoo LDN group, I wanted to hear what real people were saying about it.
I was amazed people all over the world were using this. And the range of effects were just as amazing. From people getting no help with symptoms, to people getting up out of wheelchairs and everywhere in between! Sir, I, no we, need your help. I have gotten two doctors on board and I need YOU. Sure I could sit here and do nothing, after all I am more comfortable as I wait for a cure. But I know the absolute horror of this disease. Why should we suffer because there are no clinicals to convince doctors this is for real? It is for real and this can improve the quality of people's lives while we all wait for a cure. That is what we are all doing isn't it? LDN is not a cure and you will find no one who will claim it is. I am already going off medicines I have been taking because I no longer need them. Please sir, I have no idea who shifts through the many emails you must get here, But I do hope this letter finds you somehow, as much as we are loved and supported, NO one understands this disease like those of us living with it. I thank you for your time and all you have done in education. Now I ask you to step up once more, to have the courage to take a chance, it really is harmless (allergy excepted but that is rare) and the rewards can be so great! You have been a champion for MS in many ways, how about one more?
Subject: LDN for MS
Date: Mon, December 22, 2003 9:19 pm
I've been reading about LDN for MS and I'm surprised that I haven't heard of it before. MS has devastated my life and I'm very upset that my doctors won't prescribe a drug that might help me and has been used in doses ten to one hundred times stronger than I need for almost twenty years because it's not an approved therapy for MS by the FDA. Even the MS Society is sweeping this drug under the carpet. I've lost all respect for the NMSS because I feel they're more interested in protecting the manufacturers of the ABCR drugs than they are in helping people who suffer from MS. My wife was diagnosed with MS in 1985 so I spent years as her care partner before I was dx'd with MS myself. My wife had to enter a nursing home in 1997 so I live alone wondering if MS is going to put me in a nursing home too. I'm 53 years old and MS has taken everything from me yet I can't get a prescription for a drug that has been used for years in much stronger doses. It's easy enough to feel like giving up when you have MS but when the medical community and the government is working against you it really makes you want to quit. I've written to newspapers and TV stations asking if they would publicize this injustice but nobody seems interested. They tell me to contact the MS Society, which I did, but they seem to be less interested than anyone. If they supported LDN they would lose the support of the pharmaceutical giants. Helping those who suffer from MS doesn't seem to be the priority of the NMSS as much as money is. This injustice has to be publicized. Maybe we can shame the FDA into approving LDN and then every generic pharmaceutical company would make it in the doses that we need.
Date: Wed, 07 Jan 2004 16:05:46 -0000
Subject: Hi, New to Board
Hi, My name is D~~~~~ and this is the first time I've posted to your
Group. I have been taking LDN for the last 25 days with excellent
results, eg sleeping better, walking better, less fatique etc. I
find it very difficult to believe that this drug has made me feel so
much better in such a short time! Just thought I would introduce
myself and say 'great Board'.
Date: Tue, 13 Jan 2004 18:30:12 -0800
Hi all, Just wanted to thank everyone for all their information, and those that I've
e-mailed directly, thank you for your responses, they have been very helpful.
I'm still one of the newbies here, only been on the ldn since the 11th of Dec.,
but i've been very fortunate in the belief that not only is this halting/stopping my
disease progression, but I've had some of that remarkable relief from some of the
symptoms. headache, gone, 2 1/2 years of migraines, wow! brainfog, pretty much
cleared up, can almost think straight again, dizziness/vertigo, pretty much gone,
balance, not bad, not bad. Burning pain/sensations and stabbing pains, very mild.
Legs are still weak, but can walk unaided now. need to strengthen them back.
Been taking Tai-Chi classes, and it was helping even before taking the ldn but
not as dramatically. We, (wife&I) sat through the whole 3 hours of "The Return
of the King" at the Movies and I didn't have to get up to "rush" to the bathroom
once. On top of all this, when I went to see my neuro last week...she wasnt really
impressed. She says she's glad it "appears" to be helping me, but she thinks it's
just a Placebo effect. She did renew my prescription for me, I'll give her that.
Ignorance and Apathy....I don't know, and I don't care, as long as it "appears" to
be working, I'm going to stick with it. Just hope everyone here has positive results
from it as well. Thank You again to everyone for all your posts and keeping us up
to date on what it is doing for you. As Tiny Tim said, May God Bless Us, Everyone.
(or something like that)
Date: Wed, 14 Jan 2004 23:10:52 -0000
Subject: I love my doctor
Just had to tell you guys about my doctor's appointment. I had to go
in and get a new prescription for my ldn. He only gives it to me for
3 months at a time, that way he can suck out my blood and check
things out, plus he wants to see how good I'm doing. It's been 5 1/2
months since I started ldn and he's still amazed at how awesome I'm
doing. He said something to me that freaked me out, but got me
really excited. He said that HE is going to bring up the subject of
ldn with his other MS patients. I'm sure my mouth hit the floor.
He also told me that he had recieved a letter from my neurologist.
Just to refresh your memories, I went behind my neuro's back and went
off the rebif and started ldn. My neuro wasn't real happy with me,
but that was before he did the actual physical exam. He too was
quite surprised with my lack of disabiltiy from the last time he had
seen me. Anyways, in this letter from my neuro he told my GP that he
wants them to work together and he wants to hear how I'm doing. Both
of them are quite anxious to see another MRI...as am I. I just wish
I'd had an MRI after the rebif and before the ldn, because I had 3
really bad relapses onthe rebif but it's really hard to get in for
I'm just soooo excited and happy that both of my doctors are paying
attention and listening to me about ldn, and actually considering
prescribing it to other patients.
I just had to share that, it really made my day.
Date: Jan 2004
I just had an MRI last Thursday. the first one since last year. I have
been on LDN since June 3rd, 2003. There are absolutely no changes since my
last MRI. That tells me that there is no progression in my disease. Thank
God and Thanks to LDN
Date: Mon, 09 Feb 2004 21:23:11 -0800
Subject: Re: update on my status (long, but please read!)
This is great.
tests like this with gadolinium are so useful!
On Feb 9, 2004, at 7:21 PM, firstname.lastname@example.org wrote:
The really good news is that I went for a brain MRI last Thursday and got the results Friday. This MRI was being compared against a prior one which was done in 10/03 (the same week I started LDN). That previous MRI was being compared with one done in 2/03. I have not seen my neuro yet to discuss the results, but here is the relevant info from the MRI report the hospital gave me. Note the last 2 sentences, which deserve the key emphasis, since I think they are highly relevant to my progress:
MRI of Feb 5, 2004: "The study is compared to 09 October 2003. Cerebral spinal fluid spaces remain normal. Multiple small foci of abnormal signal are again identified within the white matter of both cerebral hemispheres. Many of these are periventricular in location, and the pattern is compatible with demyelinating disease. There has been no significant interval change in the number, sizes, or locations of the white matter lesions. The post-gadolinium images reveal no abnormal enhancement of the white matter lesions or other portions of the brain."
Now, for comparison here is the MRI report from 10/09/03:
MRI of October 9, 2003: "The study is compared to the previous brain MRI from
So, that's the news. Sorry for the long post. One thing I would like to ask is - have the folks who run this site (or the lowdosenaltrexone site) ever considered setting up a separate section just for people like me to post MRI results such as the above??? I think that this would provide more compelling anecdotal evidence necessary to have LDN looked at more closely by the medical community.
Granted, I am doing so many things to try and help my MS that I can't say for sure it was the LDN that is helping. But I can say the following: I feel a lot better (for example, the Lhermitte's is the best its been in years) and the MRI is showing that there was no progression in the last few months, nor do I have any active lesions.
I understand the scepticism about LDN. MS is a weird disease. For all I know I could have gotten these results doing nothing at all; that's just the nature of the monster we're all fighting. But, I don't think so. I really believe LDN, along with everything else I'm doing, is helping.
Thanks for listening!
Date: Wed, 4 Feb 2004 08:56:25 EST
Subject: Re: Fwd: now stiffness
that is good to hear cuz my hands are very stiff and when I read that I was like uh oh I started on 3mgs Friday, yes six days ago, I was on a cane and frankly still staggered with it.
Well, I thought for the first few day it was my imagination, but it wasn't. I am walking, no staggering. no cane. Yesterday I ran down the steps of my house, I could balance on one foot, I walked so much that my calfs are sore! and I had to try it and I danced! It feels like a dream! My MS is progressive I used to dread a new day because I would find something new wrong, now I can't wait for morning to see what will be better!
This little drug has brought me joy and hope where there was little. the urinary urgency is gone now. Six days! what will happen next? Has anyone had good luck with the numbness and what I call the heebie jeebies that goes with it?? I now dare to hope this will get better as well.
Thank heavens for the Internet, my Doc had never heard of this I sent him all the information and said if it won't hurt me why not try it? He said I can't find anything that will hurt you at this low does, lets GO! we found a chemist/pharmaist to mix it and here I am. Well, I am going to walk my dogs today, something I haven't done in a very long time. I am very thankful. anyone can email me personally or post...
Date: Wed, 4 Feb 2004 17:34:11 -0500
Subject: Re: Fwd: now stiffness
Fantastic!! Keep up the good work. The LDN has done more for us in the last year than everything in the past 20 yrs.
Date: Fri, 13 Feb 2004 09:00:51 EST
Subject: Re: Re: Need articles, facts, etc. for the doc.
I don't know if this will help...But I am writing to let you know that my neuro has been leary of the LDN for the past 2 yrs as well and hasn't yet prescribed it for me either. I get mine from Dr. Bihari. He only feels that way because it has not yet had "clinical studies" done. But tells me to KEEP DOING WHAT YOU ARE DOING!!! He DOES, however agree, that since stopping ALL my meds and ONLY taking the LDN, I have been, and continue to do progressively better in all areas of my MS. My balance, memory, spasms, joint pain, "lack of relapses",( My life, in general is just back and better!!! ) since starting the LDN, have all improved. In fact, someone else had written about the "healing of lesions", I, too, had written about that not long ago when I had gotten the results of my last MRI. My lesions are healing~~, and yes, that Impressed my neuro.
He see's how much the LDN has been helping me in the past 2 yrs of being on it and nothing else. It's truly sad when a doctor can see just how much something is helping, yet without a study, won't write a script for others. I told him "shame on you....being an MS Specialist, knowing what it has done for me, not to tell your other patients about it, in hopes that it could possibly be doing the same for them, not even to give them the choice". He is now looking to find the time to call Dr. Bihari!!!! I won't stop pushing till I get him to at least make that call and look into LDN. There are just too many people this medication can help. And I feel with the interest of a few Neurologists, just maybe, there is a chance of more prescriptions getting written for others, and hopefully..... studies getting done one day.
Good Luck to you
Date: Tue, 17 Feb 2004 13:44:23 -0000
Subject: NEW MEMBER
I'm J~~~~~ and I was just dx in Oct 03 I was put on Copaxone in Dec and it was not agreeing with me much so I started to talk to others here on the net about alternatives. A great guy by the name of D~~~~~ directed me tio this site. I was scepticable but I too took this info to my neuro who not only would not look at it but told me that it was a type of chemo and other misinformation.
I researched further and went to my GP. He read everything I had to offer and he agreed to try it with me. I stopped Copaxone on Jan 12/04 and I have since been on LDN only.
I was on other meds for restless leg syndrom and since have stopped taking those as well as I do not have the RLS anymore. I have better thinking ability and balance and I now have enough energy to work out everyday which I have been doing for 30 mins each night after I work a full day and take care of my 3 year old daughter!! So does this work I say yes!!!! 2 months ago I could not do any of this and could hardly form words to read a story to my daughter and now I can do it all!!! As far as I am concerned you have nothing to loose and everything to gain and this is the least invassive drug I have ever found for MS and it works better then the crabs. Hope this helps
Date: Mon, 1 Mar 2004
Subject: Re: My Experience with LDN
I have had a similar experience. I started 4.5 mg. Feb. 10th, and felt
super, then worse, and gradually better. So I encourage you not to judge
results for several weeks. I still have some bad nights and days, but these
are minimal, and the wonderful healing I have had, stays. I really believe
that what has been said on this site is true: When we are stressed and/or
fighting infections or not taking proper care of ourselves we will feel
considerably worse. The good news is with a little care I am able to feel
the best of my LDN progress again very quickly. For me the occasional bad
spell is nothing compared to the sameness of my incapacity before LDN.
Date: Wed, 3 Mar 2004 00:49:27 -0500
Subject: Re: New to MS - Haven't read about LDN failures - have you?
I can only tell you my experience, and, as you will be told by others,
copaxone is the ONLY ABC that is at all compatible with LDN. The others
actually work against it, they say. I was diagnosed 3 years ago, tried
Avonex and hated the endless flu symptoms, tried Rebiff and got really
depressed, then was on Copaxone for a long time with no side effects, but
was also very slowly getting worse. I have only been on LDN for two months,
but they have been the best two months I've had in 10 years. I can't tell
you about long term from experience. But I stopped Copaxone, and truly
believe from my experience and from what others say, that LDN not only stops
progression, but in some cases helps end existing symptoms.
Date: Tue, 16 Mar 2004 05:37:52 -0000
Subject: 1 month on LDN
I started LDN on February 13th. What a difference it has made in my life. MS was being very nasty to me, to say the least. I was going down hill fast before starting the med and in one month my health has improved so much. The bladder issues are gone, my speech is almost perfect, and the wobbles are gone. I do bump into a doorway now and then. The best that has happened for me is the awful tingles and feeling like my fingers and toes were in light sockets has almost disappeared! It amazes me that there is a drug out there that can benefit so many and doctors tend to ignore it. My neuro had never heard of LDN therapy for MS, but was willing to give me the prescription knowing that it couldn't hurt me even if it didn't help. She's an angel and I wish everyone had a neuro like her. She is in the Kansas City area if anyone is interested. I read each and every post daily and have learned so much from all of you. What a blessing this site has been for me.
Date: Fri, 26 Mar 2004 16:56:00 -0000
Subject: Re: Can't sit back and read these attacks anymore
—Until you experience the benifits from LDN, you will not realize
how this drug has helped so many!!I would have been in a wheelchair
if I didn't start on LDN.. for me it is actually a life saver!!!!!
Date: Thu, 1 Apr 2004 09:41:29 -0500
Subject: return of old symptoms
Don't give up! I've been on LDN for almost two months. The way it is "seeming" to
work with me, is that I am "reversing" through all my past exacerbations...For
instance, in the beginning, I started with tingling and numbness in my legs, and
haven't had that for years. When I first started on LDN, that was one of the first
things to "reappear"...but only for a day or so. Again, another first symptom, I
use to get numbness and tingling on my lips and cheeks whenever I started an
exacerbation—-(maybe for the first five years)...and voila—-the second old symptom
to reappear for a few days was that numbness in lips and cheeks.
It's been pretty quiet physically for the past two weeks, but yesterday I had a
"flare-up" of vision disturbances; again, from a previous exacerbation—-that lasted
most of the day yesterday, but is totally gone this morning.
For me, it appears to be a process of going back through all the old _ _ _ _!
But this week, on the up-side, I have again noticed several new improvements..I am
able to "slip" my feet into my shoes when getting them on (have had to place them on
my feet manually for years)......I was doing part of a Denise Austin exercise tape
today, and realized I was standing in the middle of the floor, and not holding on to
the wall while doing the strethching and light aerobics.
It almost seems that for each old symptom which momentarily comes back, I get
something new "back" that I can do!
Just give it a chance and see what happens.
Date: Thu, 08 Apr 2004 02:08:12 -0000
Subject: Re: Is LDN effective for fatigue?
I have been on ldn since Jan. My brain fog has cleared up...and I am starting to feel like I have my life back.... I am definitely not as tired as I used to be. There are days where I feel that I have a 'whole' day!! It amazes me.
The first weekend on ldn I slept almost the entire weekend, and the same thing the next weekend..... I feel that I am less stressed on ldn, and my body was catching up on years of much needed sleep.
I am an at home mom, for 3 teenage boys.... and now it seems that I can do what I have to do without worry.
Of course everyone has their own ldn story. You would have to try for yourself to see what it does for you. Also, I strongly suggest using a pharmacy on the www.ldninfo.org site!!
MS (progressive)Subject: Re: LDN for Long Time Progressive MSers
Actually both my brother and I are spms and ppms respectively and like S~~~~~
I will concurr. Even though it doesn't work well it still works,and is worth
taking as I feel (for me anyway) the progression has stopped dead in its
Since there is no untoward side effects encountered aside from the
stiffness(and benfotiamine is helping with that :o) I will continue for as
long as I can get it.
The only major improvement my brother has seen is the return in his ability to talk, but that is reason enough to keep taking it.His spasticity is also greatly relieved. My brother and I have both had ms since 1981 or maybe before, he is in a wheelchair all the time and I am in one when shopping(with a pusher)I can only walk twenty yards and that is with a cane and a lot of pain. Both of us never had any of the CRAB drugs as we were soon told they would do us no good!
LDN has at least stopped the progression and given us back a little of what we lost. I started with 4.5 but soon had to get down to 3.0mgs and that seems to be the majic number for a lot of people. Sure I spasm every time I stand up but what the heck I am still able to stand! And I walk like I am on very shaky stilts, but I can still walk! Last year I was in a wheelchair almost twenty four seven. I will always say GO FOR IT WHAT HAVE YOU GOT TO LOSE? Day one hundred and ninety eight (of ldn for ms)
MS (progressive)Date: Thu, 22 Apr 2004 11:28:51 -0500
Subject: Re: Whatever type MS...
My sister has PPMS and she is getting help with the LDN. She has had no new
progression of symptoms since she began LDN back in November. I would also go so
far as to say that she has also had symptom relief. She no longer runs to the
bathroom multiple times during the night. She sleeps for 8 to 9 hours a night, her
bowels problems have cleared up. She no longer has muscle spasms in her legs and
feet. The numbness/tingling sensation in her feet are gone.
She was diagnosed in May 03. She declined extremely rapidly and her doctor told her
she had one of the most aggressive forms of MS he had ever seen. She was
hospitalized twice in three months. Her results from the LDN were not immediate but
she had been on extremely large doses of steroids daily as well as 11 IVs of
solumendrol over a 4 month period. It probably took three months on the LDN to see
results but that could be because it took that long to get all the steroids out of
She only takes LDN, her daily supplements, and a small dose (600 mg/day) of neurotin
for neuropathic pain.
Maybe its because she started the LDN so soon after her diagnosis (6 months) that
she has been helped and her progression has stopped.
Date: Wed, 5 May 2004 06:48:06 -0400
I have been on LDN since Jan. 1st and am one of the ones that had 'miracle' results.
No more restless legs syndrome, peeing all night, balance problems. I think and
talk better, and have much more muscle strength, and my head 'tic' is gone, etc.
These have remained stable. I still have cognitive and sensory fatigue, and cannot
walk as far as I would like etc.
Last Friday I stopped the LDN because I was to have surgery on Monday. By Sunday
night I was feeling the RLS and up peeing 5 times, and by Monday I was using the
walls for support and my head was bobbing again. I had a laparoscopy during which
they removed my ovaries (I am 60 so I won't miss them). I refused further pain meds
after Monday night, because I wanted to get back on LDN. The worst pain is from the
intubation that the anesthesiologist did, sore throat, neck and throat muscles very
painful. I just take Tylenol. I know this will pass.
(Hospitals are not healthy places to be. The only things they could offer me to eat
after surgery were mostly sugar.)
The point being: LDN is the source of much of my well-being, and without it
the old symptoms come back. I have had good friends and neighbors who have watched
out for me, and I am proud that I can get by without the opiates (sp?). As to other
LDN site stuff, I have lost weight more easily, AND my hair, which was thick,
graying, and was wavy in humid weather, is now even thicker and more like bailing
wire than hair.
Thank you all for being there. You are a constant source of inspiration.
Subject: comment on the miracle of LDN and MS
Date: Tue, May 11, 2004 10:35 am
To whom it may concern,
over a month ago my arm was barely able to be raised and held for more than 10
seconds followed by lack of coordination and weakness in the leg..After 4 nights on
LDN I was able to walk normally and my arm was at 100%. I have been telling everyone
afflicted with ms to try this drug, as you are doing with this website.
Date: Tue, 04 Nov 2003
Subject: MRI NOT IN MY MIND!!!!
Back in Sept*. I wrote, letting you all know that it was my 1 Yr. anniversary of being on LDN. I've had nothing but positive to say about it, and still don't. In fact, my reason for this post, is to let you know that I saw the films from my last MRI while seeing my Neuro a couple of weeks ago. After my examination, and my Neuro being quite impressed with seeing just how well I'm doing...He showed me my films.
For the past 5 yrs. I've had 4, extremely noticable, lesions on my brain, all of which glowed brightly for my MRI's! Except now - 3 of the lesions are just about gone. And one, has shrunk quite a bit. All of which, even my Neuro feels, is happening because the lesions are healing themselves. This is NOT in my mind!!! Here is a doctor that hasn't prescribed the LDN for me, but stood there telling me NOT TO STOP what I'm doing!! I know That won't happen!
I've stopped everything he had me on, from shots to pills, before starting the LDN so I would know it's full effects. And I have to say - I couldn't be doing any better. Did I mention I went Hiking this week-end? Something I haven't done in 5 yrs!! A "Sugar Pill"? I don't think so - a Miracle? No. (although I surely am blessed) I believe the LDN is doing just what needs to be done, to help keep us from progressing. That Is What I BELIEVE in! D~~~~~~, if you read this....I'd be interested in knowing just what your MRI has shown after 6 months. And, L~~~~~~, "I TOO" am a firm believer in LDN.......can you tell!!! :) take care all be well and always keep the faith!!!
[* Hi all... I just wanted to share with you my One Year Anniversary of being on LDN. I started taking it on Sept. 6th 2002 and have had nothing but positive days since. Of course, I still have a few MSy days here and there. But, my life is nothing like it was before I was off all my other MS medications and on the LDN.
And, I have to tell you, the past year has been a year of complete turmoil for me in all areas. That of which I surely thought I'd be thrown into relapse after relapse. But, to my surprise, and total thankfulness, I've not had a relapse since early 2002. Yes, I do attribute this to LDN. If any of you remember my first post, I did tell you I tried all the ABC's and was on a handfull of prescription drugs per day. Nothing helped me for 4 yrs. I'm happier and healthier, and now have my life back...too bad hubby didn't stick around for it! Imagine..he couldn't handle my MS! Oh well, his loss. Now I'm not sure he could handle me!
I'm able to do some dancing again, that's something I haven't been able to do in over 5 years. So, I'm enjoying my Life!! Good for me! Even my Neuro is impressed. He hasn't seen me in 8 months, walked in the office and couldn't believe his eyes! I've lost all that medication wieight, I'm not using my cane, I even did the Twist, right there in his office - he was hysterical!! After seeing the progress I've made, and seeing my last MRI, and NO CHANGES, he is now looking a bit more seriously into the LDN. Hopefully, more Dr.s will get wise to the LDN and the good it is doing for us all. Thanx for letting me share. Hope you all are doing well. God Bless you all. ]
Date: Tue, 4 Nov 2003
Subject: LDN is ALL in your mind, it's sugar, there's nothing in it but filler!
That's it, the proof is in. LDN has done NOTHING for me, it's all in my mind.
LDN hasn't done anything for any of us that we couldn't do by taking SUGAR.
Being able to manually curl my toes after 43 years of documented medical records saying that I can't, and will never be able to, I just must have decided the LDN would do that for me. And the other 4 people who emailed me telling me they could never do it either, I just asked the question, so POOF, you could.
My Restless Legs Syndrome going away 9 days after starting LDN, that was just a fluke too, it went into remission 3 years and 22 days after it started, but has nothing to do with LDN.
My bladder urgency went away 11 days after starting LDN, that was just a fluke too, it went into remission 13 months after it started, but has nothing to do with LDN, it's all in our minds.
My T5 choking spasms while drinking stopped after a month on LDN, just another fluke, it went into remission 13 months after it started, but has nothing to do with LDN, it's all in our minds.
My fatigue issues changed Dramatically after starting LDN, but that too was only in my mind. ZZZZZZZZZZZZzzzzzzzzzzzzzzzz
My chiropractor during my first visit, 11 days after starting LDN, wanted to know what I did in the last week because for 13 months prior my adjustments weren't THE SAME as THAT DAY. He did not yet know I started LDN. So that change must have been in my mind, and just his imagination.
I am so glad for pennies a day, my mind can fix itself.
Well, let's all meet here in 10 years and see how we're doing.
Date: Fri, November 21, 2003
I am ~~~~ ~~~~~~.
I use a walker. I started using LDN 3 months ago. I noticed soon after, I could urinate draining completely. Before, I had to keep sitting there waiting to finish. I hadn't been able to clean my house. Just vacuuming for a few minutes was all I could do. Now I can sweep the floors and vacuum the entire carpet in 45 minutes, without resting. I don't get as tired as I did before, either.
I am impressed and very thankful.
Thank you very much!
Date: Fri, 21 Nov 2003 01:14:34 -0000
Subject: Re: Fwd: THANKS
It's wonderful isn't it J~~~.....I received one of those thank you notes myself, today....as follows:
To: ~~~~~ ~~~~~~
Sent: Thursday, November 20, 2003 7:43 AM
Subject: Re: Happy Thanks Giving
Thanks, Happy-T-Day to you too!!!!
I want to tell you, R~~~~~~ started on LDN a month ago & it has done wonders for him!!!!
Thank You for telling us about this wonderful drug!!! He quit taking everything else & only takes the LDN. He has done more in the last month and a half, than he has done all year. We tried & failed local Dr.s., so got it from Dr. Scot.
Date: Thu, 20 Nov 2003 11:00:53 -0600
Subject: Fwd: THANKS
Hi guys....I know that some people might wonder why we continue to spread
the word about LDN. Takes a lot of my online time these days actually. I
just received this wonderful letter from a woman who's daughter is now
taking the LDN. It warms my heart when I hear these stories. Just thought
you all might like to see the e-mail that I received from her.
Date: Thu, 20 Nov 2003 14:47:41 +0000
I want to thank you so much for recommending LDN to me for my
daughter M~~~~~~. She started it on September 4, 2003, just over two months
ago. She has SPMS and could not walk at all, couldn't read because her eyes
"jumped" all the time, could hardly move from the couch to the wheelchair,
was weak, dizzy and nauseus much of the time and slept almost all the time.
In this short time her speech is absolutely normal, she can read everything,
no more nauseau, dizziness or weakness, she can completely dress herself,
sleeps 7-8 hours a night and no more during the day (once in a while a short
nap), looks and feels very well. Last night she walked up and down the hall
(holding railings) twice before watching her favourite tv shows. In short,
it's a miracle and I have you thank. Keep spreading the word. M~~~~~~ sees
her neurologist in January - he will be amazed, I know. He was wonderful to
prescribe LDN but did caution us that it probably wouldn't help! I have
told him what has happened and although he says it is probably a coincidence, I
think he realizes there is something important here. She went through a
couple of weeks of her legs being very stiff but when she changed the time
she took LDN from 1 am to 10:30 pm, it went completely away.
Date: Wed, 19 Nov 2003 19:11:00 -0500
Subject: Re: neuro visit today
Saw my neuro today. He had my new MRI right there. Said there had been no change.
Which is good because I could feel a lot of change during my six months on Copaxone, and slightly better on LDN.
He renewed my prescription for LDN.
Said I have advanced MS and is suprised that I can still work full time. I do work full time and walk a mile or two a day and go up and down double and triple height paper mill stair cases every day three or four times. MRI don't really tell very much in the real world. Though the MRIs did show large arcs of white areas (MS damage)in my brain. I hope next years MRI shows a noticable improvment!
> When you started LDN and how long you have been on it.
> What has LDN done for you.
Stopped the MS progression and associated pain!
MS Demon no longer sends his witches to beat me on my legs with their broom
On day 10 my sense of balance returned
I no longer am totally fatigued all the time.
I have stopped having to take stimulants in order to be able to work and
keep my employment. No longer have to take muscle relaxants and
My urinary control has returned to normal. I no longer have to take any pee
The only drug I am now taking is LDN. I was taking hand fulls [of other drugs] to cover up MS symptoms.
Both my Neuro and my GP are impressed with the obvious improvements in my
health from LDN!!!
> Your age and type of MS optional but appreciated.
I am 5~ years old. Last November (2002) I was DX with advanced MS. Though I was not told any specifics it was obviously RR and secondary progressive.
> And any other wonderful thing you have to say about it.
LDN has given me my life back.
Date: Fri, 14 Nov 2003 11:35:35 -0500
Subject: Blood tests
Just wanted to share this with everyone. For the past few years
whenever I had a blood test you can practically see my immune system was
off. My lymphocytes were always high and my neutrophils were always
low. All the doctors would say is that something was going on with my
immune system. Well, I started LDN in May and my last blood test was
all "in" range. Go figure!! If that's now proof that I am healing, I
don't know what is. Although next year I will be doing another MRI and
I hope to have positive results with that as well.
Date: Tue, 11 Nov 2003 06:46:16 -0000
Subject: Re: LDN for Brachial Neuritis?
LDN has such minimal side effects that I'd give it a try. In the
first few months on LDN one might experience an increase in symptoms or numbness,
stiffness, fatigue & tingling...that doesn't always happen. I have MS and I
experienced numbness for a couple of weeks in my hands and had stiffness but all of
that has subsided and I'm doing fantastic!!
I've had approx. a 70% reduction in my pain, a 40% to 50% reduction in spasticity and a 40% reduction in fatigue. Bladder is 100% controlled on LDN. It took LDN 2 months to stop my severe insomnia and I'm no longer short of breath. I was on a mobility scooter for 14 years. I went shopping on foot the day after I took my first dose of LDN at 4.5mg. I have been scooterless for 4 1/2 months. I can ride and outdoor bicycle for the first time in 14 years. I can use the weight room at the YMCA. I can now climb 19 stairsteps up to the weight room. Copy this and take it to your doctor.
BTW, who is this wonderful doctor wanting to prescribe LDN? Hug his or her neck!!!!! Not everyone with MS will see symptom improvement. I just happened to be one of the lucky 2/3 of people with MS who will see symptom improvement on LDN.
Date: Mon, 10 Nov 2003 12:39:45 -0500
Subject: RE: LDN for MS
I just had my yearly MRI after six months of LDN and it shows no change.
That is good because before LDN I was on Copaxone and could feel myself
getting worse every day (sometimes with terrible pain associated with it!
Sent: Monday, November 03, 2003 3:59 PM
Subject: [lowdosenaltrexone] Neuro visit
Had my first Neuro visit since starting LDN. I don't know what I expected to hear but I heard NOTHING! She tested my walking speed , finger /eye. leg streghth bla bla....Asked if I have had any attacks since starting LDN and continued to write. I know I have improved since stopping the Rebif and starting LDN. I asked her opinion and she said"I cannot believe this will help you" Duh...........it already has! She will not prescribe an MRI and wants to see me in 6 months so we can talk.
She was the lead investigator for Rebif so what was she supposed to say? All I
know is that I have not felt this good in over a year! I started LDN on the 4th of
July so its almost 4 months to the day. It was also the first of the last 3
summers I did not get worse.Just had to write and share.
Subject: Re: Question about LDN [ & Avonex]
Date: Mon, October 13, 2003 11:35 pm
I contacted you a while back. I have been taking LDN (3 mg) for almost
11 months. I just had my MRI for the year and there were no new
changes. I have had no exacerbations, or new symptoms. I just thought
I'd give you a follow up like you had asked for.
P.S. When I originally contacted you I had asked you about taking LDN
with Avonex. I am only taking LDN. I am not on any of the ABC Drugs.
Date: Fri, 10 Oct 2003 15:00:10 -0000
Subject: im doing better
HELLO ALL, I'M DOING BETTER YET. MY FOOT IS MOVING BETTER. MY BALANCE IS BETTER TOO. I'M UP TO 4 MIN ON MY EXSESISE BIKE. YEAHHHHH THIS IS GREAT. THANK YOU GOD FOR YOU BLESSING ME SO MUCH.
LOVE&HUGS TO ALL
Multiple Sclerosis (plus Parkinson's Disease)Subject: Fwd: Multiple Sclerosis
Date: Thu, October 2, 2003 7:23 pm
Just to let you know,
I sent this letter to a very popular radio station in Ireland, The Pat Kenny Show. I really believe Dr. Bihari is wonderful and deserves a Nobel prize.
If ever I can be of any assistance please do not hesitate to contact me.
Subject: Multiple Sclerosis
Date: Thu, September 25, 2003 12:18 pm
Dear Mr Kenny,
My name is ~~~~~ ~~~~. I live in ~~~ ~~~~~, USA and have a story I would really like the Irish public to hear but am not sure how to go about this. I would appreciate your opinion.
I am 3~, my husband is 3~. We have 3 little girls aged ~, ~ and nearly ~. My husband has had MS for about 10 years. He was officially diagnosed in September 1998 during his first major relapse in London. We moved to ~~~ ~~~~~ in January 1999 and in July 1999 he began Avonex therapy which is a standard form of treatment for MS patients. It is an injection taken once a week. At that point he was numb from the waist down but could walk unaided after he taught himself how to walk with the new loss of sensation. He never regained any of the sensation but we proceeded with our lives and were happy with the Avonex in that although he obviously slipped yearly, in that his stamina and ability to walk certain distances kept decreasing, we felt we were doing something and were beating the odds.
Then came January 2002. He just started to slip fast. He became very dependent on a cane whenever he left the house. Then came March 2002, he became dependent on his cane at home. He took steroids in May 2002. They pulled him back a bit for a short while but by August 2002, he could hardly get off the couch, kept falling over and watching him climb the stairs was frightening. I was going to get him a walker for the house and move our bedroom downstairs. He tried steroids but they didn't work. He had turned progressive MS. His neurologist really wanted him to continue on the Avonex or switch to Copaxone (a daily injection) as there was nothing else to offer. Things were grim.
Then I found a Doctor in New York City. This doctor, Dr. Bihari, claimed that he had 70 patients with MS all in remission, some with huge improvements, taking one pill a night, with no side effects. His first patient is his daughters best friend on this 17 years with no progression. Also this Drug was cheap, $35 a month and FDA approved at much higher doses. It all sounded too good to be true. We took the information to the Neurologist and he said that there is no way it could work but agreed that it also could do no harm. To humour us he prescribed it. My husband came off the Avonex and started LDN 4.5mg nightly September 12th 2002. Within six weeks he could walk normally again with his cane. He stopped falling over and we had our lives back. It is over a year now and he is still walking normally with a cane, not falling over, no relapsing and no need for steroids. It still seems too good to be true.
Dr. Bihari believes that everyone with MS has low endorphin levels. Endorphins regulate the immune system. He claims that LDN (low dose naltrexone) if taken between 9PM and 3AM, triples endorphin production. When this happens the immune system cannot attack itself anymore. MS is an auto immune disorder whereby the immune system attacks the myelin sheath of nerve endings. This causes scarring of the brain and spinal cord. Dr. Bihari believes that the LDN will only reverse recent scarring, that which occurred within the last three months but he claims that MS will not progress. All of his information is on www.ldninfo.org. It is emotionally dangerous to fully believe this but so far he is right. I cannot help but believe. My husband refuses to believe it will hold his MS at bay forever but also says that if it all goes to pot in the morning he had a good year!
Because of Dr. Bihari's success with MS he started reaching out to other auto immune disorders. My Uncle is from Donegal flew out here to meet Dr. Bihari September 2002. My uncle has Parkinson's. He became Dr. Bihari's 4th Parkinson's patient and one year later, he has not progressed. It is shipped to him every three months from Irmats pharmacy in New York City.
I have a friend in Galway whose husband has MS. He is R~~~~~ ~~~~~~ and lives in Oughterard. He was also on Avonex and getting worse. I told them my story. He went to his neurologist, DR Henessey in Galway. DR Henessey told him to give LDN a try. It is not compounded in Ireland so Robert had to get it on his own. He found DR Lawrence in Swansea who has MS himself and is taking LDN from Dr. Bihari in New York. Robert is getting his LDN shipped from DR Lawrence. His details are ...
Dr. Bob Lawrence,
Dietry Research Ltd,
10 Heol Gerrig,
Swansea SA5 9BP. Tel:01792 417514
R~~~~~ is doing incredibly well and wants to bring this to the national papers and I hope he succeeds. He is on this about 2 months now and his fatigue is practically gone.
There are now over 2000 people here with MS, all in remission, some with more improvements than others. There are many LDN message boards on the internet. The www.ldninfo.org has a link to one, and another is http://www.voy.com/156761/.
I have tried posting my story on the MS Ireland webpage, and many other MS Sites, but it is constantly blocked. I have contacted the MS Societies in Ireland by phone, namely, Aidan in Galway, Chris in Dublin, Elizabeth in Cork, John in Letterkenny to name but a few and they are all keenly interested and investigating. Some have MS or a loved one with MS.
It is important that LDN isn't broadcast as a cure or over inflated, as to play on the emotions of people with MS is not right. However it would be wonderful if all with MS had access to this information and made up their own mind as to how to treat their illness. To get the Drug approved for MS will cost millions and it is a very cheap Drug already approved at much higher doses (50mg) so nobody is going to make money on this and most with MS don't have enough time to wait for this. If it is agreed that the Drug cannot do any harm and does not cost an arm and a leg, surely it is worth a try. If it fails, it fails. The medications on the market for MS are very costly and have huge side effects and only promise to slow down progression 35% of the time. There really isn't an effective treatment for MS yet and MS is rampant in Ireland.
It really is food for thought. I would be delighted to hear your opinion and input as how to handle this story.
Date: Tue, 02 Sep 2003 01:22:35 -0000
Date started: July 1, 2003 (3.0 mg - just increased to 4.5mg 2 days ago)
Improvements: Better sleep(problem for yrs), less fatigue(no more naps), better bladder control(less Ditropan xl), mood better(no more Celexa) less pain(no more Bacolfen), balance better, walking better (not hanging on to husband) muscles much looser, able to get a good stretch on legs.
Age: 4~ yrs old on Aug. ~~. (LDN has been a good Birthday present)
I missed one day of LDN 2wks ago (waiting on refill) but never again! I felt very bad the next afternoon. I could not wait to go to bed, take my LDN and end my suffering for the day. My husband is happy he is getting his wife back. We had two parties for Labor Day weekend. Both nights we partied until midnight. No nap all weekend. I could not have done this before starting LDN. I am still not normal but much improved.
Date: Wed, 9 Jul 2003 19:03:44 -0700 (PDT)
Subject: Re: Will we need LDN for the rest of our lives??
I have been on LDN since May 1st of this year. I will gladly take it every night for the rest of my life. What the H, LDN gave me back my life......................... 4 months ago, I didn't know how I would survive on disability/social security, if I could get it, and saw no way to continue working, and maintaining a PRODUCTIVE career. I was really scared, wondering if I could survive, and how I would do it. I care for my elderly mother since dad passed away, and am helping my son get thru college. I am the only income here, so I was really scared. Since starting LDN, I am successful at work again, working on starting my own business, and am even back to landscaping my HUD home. This project has been on hold for 2 years because I could not come up with the energy. Today, I can go out, swing a pick, dig dirt, lay sprinkler line, and all the related stuff.
Everyday I say thanks, for finding this web site, and the straight forward, no bulls communication everyone had posted. Because of all of you, sharing your stories, and all of your honesty, I went against all the high power medical advice I had recieved, and played the hunch. No one on this sight has anything to gain by pushing LDN, other than the satisfaction of knowing that they just might help someone else. That is powerful persuasion. Probably the best decision of my life-LDN.
My neuro does not know yet, next visit in Aug. If he gives me any negativity or static, I will have him join my pain, muscle spasms, fatigue, and disease progression. They are no longer a part of my life, nor will he be. THANKS TO ALL, your honesty and candor convinced me that this was to be my path. The right path indeed.............. Keep on postin, keep on talkin, and we will beat MS, with or without the mainstream medical establishment. Remember, Jonas Salk was at one time considered a QUACK. Its a good thing he did not listen. I'll bet even my neuro would agree with that.
Take care, Good luck, and Best wishes to all of my MS family,
Date: Mon Apr 7, 2003 1:24 pm
Subject: Side effects of LDN
LDN IS A WONDERFUL MEDICINE
I have MS and reflex sympathetic dystrophy and was on a fast downhill slide before using LDN.
I am extremely sensitive to ALL medications and supplements. I think I
could write a book on "reactions and side effects not listed". I
started with 3mg LDN and suffered insomnia for the first two months; I
also had dizzy spells when I awoke during the night with a feeling of
anxiety. After the initial acclimatization — is that a word :-) — I
finally built up a tolerance and enjoyed the best, restful sleep I had
in years. I have been on 4.5mg for the last year with no side effects.
I HAVE NOT had an exacerbation since I started using LDN three years
ago. It was well worth getting used to!
Good Luck to ALL
Date: Mon, March 31, 2003 2:54 pm
I want to let you know that after 8 months of LDN I notice a great relief for wonderful urinary bladder control. I have had MS for 4~ years starting in childhood at age 8. Diagnosis was made in 1977. I do agree that some old symptoms return if I get overtired or overly hot. I am stronger and so happy knowing that my MS will not get any worse which means I can still walk short distances with my cane. I am so happy my naturopath told me about LDN.
Date: Mon Mar 24, 2003 2:00 pm
Hi my name is ~~~~~~. I have MS been taking copaxone for 2 years keep
getting worse. Went on ldn 1 month ago feel much better more strength in
right arm can hold and drink coffee from right arm now. Sleep much
better at night. Am emailing this to the National MS Headquarters in
Cherry Hill New Jersey. Maybe if we all email them they could get this out
to every one with MS. their email Address Is email@example.com
like hearing from every one.
Subject: [lowdosenaltrexone] My husband has MS
Date: Sat, March 22, 2003 7:00 pm
My husband has MS and he just started taking LDN last month. He is
on his second bottle. The first month his GP gave him a script for
3mg. After emailing Dr. Bahiri, who recommended the 4.5mg. his GP
changed the prescription to 4.5. He had improvement last month with
the 3mg dose. but is seeing more results this month with the higher
He has rr, but we think it was changing to prr. because while
on the abc drugs he was continually getting worse. He decided, after
talking to his neuro, to stop taking any of the abc drugs, because of
the side affects and the progression of the disease.
He has been noticing more control over his legs especially his right
one, which he was barely able to lift. He is less fatigued
everyday. And for the last couple of days he has been able to keep
his balance without using his cane! We are really excited about the
results. I told him about the group, so he will probably join also.
We need to get the word out for others with MS and any other
conditions that this may help. It doesn't hurt to at least try it.
If it doesn't work for you at least you tried.
Subject: Re: Updates
Date: 02/27/2003 10:15am
Here is my update on using LDN. I started at the beginning of August, 2002.
Prior to that time I used a wheelchair if I needed to walk more than 30 feet
at a time. I could not drive for more than 10-15 minutes. Since LDN, I am now
not using a wheelchair unless I need to walk for more than a half hour
straight. I can drive for 2-3 hours at a time! My fatigue has greatly
improved, but not completely eradicated. I will never stop using LDN!
Subject: low dose naltrexone side effects Date: 01/28/2003
I am currently taking 3mg of Naltrexone at bedtime for my MS. I began taking it Jan. 12, 2002 and within 3 days I was up out of bed doing things I hadn't done for years. My exhaustion is gone and I no longer use a power wheelchair for shopping. It has been truly a miracle for my family.
Subject: ? for Dr. Bihari
Date: 12/20/2002 10:21pm
Good day Dr. Bihari
My wife has been using LDN for 27 months without any progression or any problem while using LDN. Thank God !! and I also thank Dr. Bihari for all his work on LDN.
Subject: Dose question
Date: 12/06/2002 06:38am
Hi. I am a 3~-year old female who was diagnosed with RRMS in 1997. I have been on Beta-seron, Avonex, and Rebif. About 3 months ago, I stopped the Rebif and began using LDN 3mg at bedtime. At the time, I was having alot of difficulty using my right hand...unable to write or do almost anything. After being on LDN, I began to notice a difference in 2-3 days. I can now write again and my hand is almost back to normal. I had struggled with this problem for almost 6-7 months and even IV steroids did not help. I am a true believer of LDN....
Subject: Re: LDN
Date: 2002-11-28 11:16:23 PST
An article about it was published recently in New Pathways magazine by Dr Bob Lawrence who has MS and is taking it himself. It's not an expensive drug so I decided to give it a go..... It worked almost immediately on my bladder problems and it now seems to be improving my walking as well. I saw my physio today and she said my leg muscles felt a lot better. I'm PPMS and my status is very predictable so my improvement was a bit of a surprise for her.
Multiple Sclerosis (plus Rheumatoid Arthritis)Subject: Testimony
Date: 07/16/2002 06:03pm
I just want to tell you that after reading my last edition of the New Horizons newsletter I consulted with my Doctor and got a scrip for 3 mg LDN and I've been on it since 6-25-02. Results are very good. I have Rheumatoid Arthritis and Multiple Sclerosis and am experiencing a significant decrease in pain and in many of my MS symptoms including muscle stiffness, FATIGUE and muscle spasms. I can't thank you enough for publishing in the newsletter. I'm always searching for alternatives to these ABC drugs and I feel that the LDN is one of the better ones I've found. I'll write if there are any other significant improvements.