What Others Are Saying About LDN
Updated: Oct 17, 2016
[Editor's note: As coverage of LDN increases, we cannot list every article and website that appears. However, we will do our best to include select examples that highlight the growing awareness and acceptance of LDN.]
Medical Journal Articles Concerning LDN
Press Coverage of LDN
The following are listed in reverse chronological order by date of appearance:
Books on LDN
Increasingly, authors are publishing books that tell the LDN story in a variety of ways. The following publications came to our attention in 2008 and early 2009:
Low-dose naltrexone has, in recent years, sparked a great deal of interest on the internet. Here are a few examples of independent websites featuring information about LDN:
Please Note: In publishing this selected list of excerpted comments, which were e-mailed to this website or to the LDN Yahoo Group, we have purposely omitted or obscured names, e-mail addresses, and other personal identifiers (using the symbol "~" when necessary), with the occasional exception of named physicians and pharmacies. However, in some cases, explicit permission was received to include the authors' names and contact information.
Niles Bauer, PhD candidate, Department of Microbiology and Immunology, College of Medicine, University of Arizona, supplied a copy of a presentation to his department in March 2007. He observed “profound” improvements within a month after the start of LDN treatment in people with a wide variety of autoimmune disorders.
FibromyalgiaDate: Mon, 10 May 2004
Subject: Re: Have had fms ( fibromyalgia for years)
I too have had FMS for around 20 years. I am also 52 years old. I have a
pal that is part of this group (my buddy ~~~) who has MS. She has encouraged me
to give LDN a try. Just last week my Doc wrote me the RX. After only 5 nights on
3mg. I can tell you that the fibrofog is lifting, I am having WAY less pain, and way
more energy than I have had in a very long time. Needless to say I am thrilled.
Although 5 days is hardly a fair trial period, I am still very excited about the
changes I have experienced so far. I have noticed virtually NO side effects, other
than feeling slightly "high". I can't complain about that. I would urge you to try
this if you can.
Gather together all the info you can and bring it to your doctor. I
printed almost everything from www.lowdosenaltrexone.org and also a few postings
from this group. My doctor knew nothing about LDN but she was willing to look at the
info, and seeing that it could do no harm, was willing to let me try it. I know how
frustrating living with FMS is. I wish you all the best, hope that this may help
you. I for one think that even feeling slightly better is a huge improvement!
Parkinson's Disease (plus Breast Cancer and MS)Date: Mon, 29 Dec 2003
Subject: LDN and Parkinson's, MS, Breast Cancer and Ireland
This board has probably doubled in size since I last posted. Great! In brief, my Uncle has Parkinson's, my husband has progressive MS, my Mom has Breast Cancer. My Uncle started 4.5mg LDN Sept 2002. He was slowly but obviously progressing. I went with him to see Dr Bihari Dec 17th 2003 for a check up and just like the first time I met Dr Bihari, I was again floored by his compassion and humility. Anyway, my Uncle modestly improved over the last 15 months in that his facial expression is better, his walk is swifter and his arms are less rigid. That visit literally made our Christmas. My husband with MS also started 4.5mg LDN Sept 2002. He was rapidly declining. He pulled back about 3 to 6 months and has stayed there since. My Mom with Breast Cancer started LDN 4.5mg Sept 2002 and is still in remission. All use Irmats Pharmacy in New York City.
I am from the West of Ireland and like many others who have seen the efficacy of LDN, would like a clinical trial for LDN and MS in Ireland. Dr Bihari will help in any way possible. I realize that MS is only a fraction of his work but if we open the door for the MS community, it will be easier for the Parkinson's, RA, Aids, ALS, Cancer and all other autoimmune communities to set up their own trials. Dr Bihari really wants LDN to hit the masses and personally I would like to see him receive all due credit, not to mention all the families that will be helped.
FibromyalgiaDate: Mon, 3 Nov 2003
Subject: Re: Fibromyalgia & LDN
Hang in there, N~~~~~~! My daughter has fibromyalgia. After a year and a half of suffering, she was finally diagnosed this past spring. She was fortunate because her neighbor (who also suffers from fibromyalgia) told her about LDN right away. It took around five weeks for the LDN to really kick in but kick in it did! She is doing wonderfully now. She no longer tells me when she has a "good day" (which was never that good). Now if asked, she tells us she feels "normal". Normal...music to our ears!
FYI: She also uses an over-the-counter sleeping aid combined with the LDN
Good luck to you and your wife! Please let us know how she is doing.
FibromyalgiaDate: Tue, 04 Nov 2003 20:38:34 -0000
Subject: RE: LDN and Fibromyalgia
The sooner LDN is started in diagnosis of fibromyalgia the better the odds are for remission. After 2 years of the dx, the harder it is for a remission. LDN takes away the a.m. pain and stiffness for me, and I have had it for approximately 20 years. It has worked very well for me after being on it for 6 months. It takes time, getting the dose right, the right filler, (I am getting methocellulose, not Lactose) and the willingness to stick with it. Also, I take it about 11 p.m. now intead of 9 p.m.
I don't feel like I have been smashed by a semi-truck in the morning anymore. LDN works well for those with fibromyalgia. It is of utmost importance to get the deep sleep. It is during deep sleep that the body builds and repairs itself.
Rheumatoid Arthritis and Raynaud's DiseaseDate: Wed, 03 Mar 2004 20:52:13 -0000
Subject: Re: optimism
I also am new to the group. Day 5 of 4.5 MG LDN for Rheumatoid Arthritis.
Day 1 and 2 were wonderful. 3 & 4 I had a flare which has greatly decreased
as of today. I also have restless leg syndrome which has completly cleared
and Raynauds which has diminished greatly. I have much more energy.
peaceful sleep and less frequent nightime urination. I still have some pain
and stiffness but as I said it is greatly diminished just from yesterday. Day 3 &
4, I got very sleepy in the afternoon and napped and it was very hard to wake
up. I adjusted the dose from 9PM to 10PM and last night to 11PM. We will see
what happens today.
Autoimmune VasculitisSubject: Cryoglobulinaemia/leucocytoclastic vasculitis and LDN
Date: Wed, April 14, 2004 2:26 am
Four years ago while working a 12 hour day, seven day a week job I noticed red marks on my feet and also had a few days of feeling tired.I was 54 yrs old at the time. One of the red marks turned necrotic, the skin dying and falling off, a bit inconvenient. I was diagnosed with cryoglobulinaemia and put on large doses of prednisone. After tapering off the prednisone "cortisone rebound" turned the disease into a fully fledged problem. Red hot burny feet with super-itchy blisters, total exhaustion, felt absolutely awful.
Tried methotrexate, Imuran, colchicine, all with disasterous results. Ended up on Plaquenil and 6mg prednisone and feeling like dog poo. Along the way the diagonosis was changed to leucocytoclastic vasculitis.
At 58 yrs of age I found myself unable to work or even do the normal things around the house to keep it clean and together. Resolved a problem which didn't help the fatigue, sleep apnoea, with a CPAP machine, which I still use, but still felt absolutely awful. Fatigue and "unwellness" is the only way I can describe it. Only other people with an auto-immune disease seem to be able to comprehend the way it feels. When whingeing to my GP she asked "Well, how old are you now? 58, well there you are see, you've just got to learn to slow down, you're not as young as you were." Slowing down didn't mean stopping altogether surely!
To cut a long story short I found the LDN site and decided to give it a go. Asked my immunologist to prescribe LDN but he refused. Found a GP who also has cryoglobulinaemia and yes he was sympathetic and gave me a script. That was three weeks ago.
I've just finished painting the house. I've stopped taking Plaquenil. I've cut the prednisone dose down. My weight has gone down about 7 kg already without any effort on my part. The lawns are mowed, windows cleaned and cobwebs removed. I bounce out of bed each morning with my head full of plans for the day and the energy to carry them out.I even dusted off the ultra-light aircraft the other day.
I havn't felt this good in years! LDN works!
Multiple Myeloma (plus Chronic Fatigue Syndrome)Date: Sat, 8 Nov 2003
Subject: Progress Report After One Year On LDN
Good Morning Everyone,
Periodically I have written about my 88 year old dad who was diagnosed with multiple myeloma (bone marrow plasma cancer) who is a patient of Dr. Bihari's. For one year now, my dad has taken 4.5 mg of low dose naltrexone (LDN) at bed time, and I am pleased to report that his most recent tests have shown no disease progression in his year on LDN. He eats well, took a two week road trip from our home in ~~~~~~ to Ohio last September, and I am writing this correspondence today from Maui, Hawaii, where Dad and I are vacationing for three weeks. I cannot say enough good about LDN, Dr. Bihari, or Irmat Pharmacy. I am so grateful for this enormous blessing in our lives; it is truly a miracle to me to have my dad doing so well. He will celebrate his 89th birthday on January 17, 2004.
When I address this group I generally focus on my dad and his recovery from multiple myeloma. Two years ago I was diagnosed with chronic fatigue syndrome. I had to retire on disability at the age of 4~. Because I have an open minded doctor who was not afraid to think outside the box, he consulted with Dr. Bihari and now I too am on 4.5mg LDN. The results have been so outstanding that next month I will begin a new job. Yet another miracle in my life.
I have been deeply moved and inspired by the messages of hope and recovery posted by this group. I have always been concerned that while LDN can be found on the internet, this information is virtually unable to be found elsewhere, unless one knows Dr. Bihari (or one of the other prescribing physicians). Therefore, I am in the process of compiling information that I would like to put in a book form, so that those who do not have access to the internet can learn about LDN. It is my belief that if the information from the web site, in addition to testimonials from those of us who have reaped the benefits of LDN, can educate the public at large and through the spread of this knowledge through a strong public relations campaign, interest can be stimulated in establishing clinical trial programs that would allow LDN to become a recognized treatment option for cancer, MS, and other ailments for which it has been shown to bring about improved health.
Kidney CancerDate: Wed, 12 Nov 2003 20:53:26 EST
Subject: LDN & Cancer
Is there anybody on this list taking LDN for cancer? I have kidney cancer and have been taking LDN for two years and so far so good.
Breast CancerSent: Wednesday, November 05, 2003 2:46 PM
Subject: [lowdosenaltrexone] Breast Cancer
Just recieved a call from my best friend who has breast cancer. She finished
6 weeks of chemo and is in the 3rd week of 6 of Radiation. Her doctor, is
writing her an LDN prescription !!
A colleague of the doctor's , who is also an oncologist, totally believes in
it and puts his patients on it often. I guess it is a "great placebo" !!
Chronic Lymphocytic LeukemiaDate: Thu, 16 Oct 2003 12:45:12 -0600
Subject: LDN and Cancer (CLL)
After 4 months and 3 days on 3.0 mg of LDN, I went to my GP and had a CBC with differentials test done to see what my chronic lymphocytic leukemia (CLL) was doing, if anything. My white blood cells (WBC) were down to 139k from 214k (max acceptable 10.6k) and my platelet count was up to 128k from 108k (min acceptable 130k). My red blood cells (RBC) are still low with reduced hemoglobin but maybe they will start improving in the next couple of months.
I could almost get excited about these results!!!!
Chronic Lymphocytic LeukemiaSubject: [lowdosenaltrexone] LDN is truly Amazing stuff to me !!! Chronic Lymphocytic Leukemia
Date: Wed, April 2, 2003 8:34 am
Started and maintained @4.5 ml LDN 7 months ago. More than I ever
would have hoped for. Creeping cancer left me sleeping 12 hours/day
and dog tired 12 hours/day by 98. Diagnosed with CLL in 8/98 and no
treatment yet except antibiotics for repeat ENT infections almost
monthly into 2002. Energy never returned, kind of tough on single
self employed Artist/Engineer(a small whine)! If I can not Shine I
starve! I chose that.
By 2002 I was more sure than ever that the non-progression of this
leukemia meant I could count on a long unhealthy and increasingly
disabled life. One or two per/20 cases have a "smoldering disease".
I read one post on LDN in my daily reading of CLL newslist, probably
in 2001. Did not know the anonymous happy camper who suffered
common Cll fatigue and gifted huge diamond to me! Carried it
around with me for a year and eventually showed info to my GP MD. He
saw the 'C' word and deferred to my oncologist who a few months
later easily found no reason to decline my clear request. Print of
website was only info provided by me.
For last three months I now leap tall buildings just for the view
and grins. Sleep is option only if I run out of fun things to do.
All I need now is extended wear contacts that are comfy after 40
hours of busy activity. Oh yeah , I lost 35 lbs without even thinking
about it. My pants just started falling down. No antibiotics in 5
months. I also cleaned places in my home/sculpture studio I had not
seen in 30 years.
This easy 3 month relaxed manic bliss may just be heaven on earth. Maybe not
LDN at all. You be de captain to float you boat. I just be cruisin' W/big grin!!!
Non-Hodgkins LymphomaDate: Sat, 20 Mar 2004 19:19:38 EST
Subject: Re: LDN for Non-Hodgkins Lymphoma
I also have been taking 4.5 mg. of naltrexone for nhl for about 5 months,
along with 4500 mg. of organic curcumin and 10 mg. of bioperine daily. I had a
scan six months after my diagnosis which reported a significant decrease in the
size and intensity of my nodes. I cannot differentiate which of these
treatments has been most helpful, but intend to continue with both.
HIV/AIDSDate: Thursday, April 21, 2005 12:10 PM
Subject: Re: [lowdosenaltrexone] Saw this drug in Discussion forum on aidsmeds.com
I have been on a drug holiday for 19 months now. My VL was starting to go
back up and t-cells going down.....then I learned about LDN. I started on
it in January 2005. My VL dropped by one-half within 6 weeks. As of my
last Dr. appt. on March 30th, my T-cells are higher than they have ever
been since I became +. My HIV doc told me that she thought LDN was a hoax
because "there haven't been any real clinical trials". Well Duh!! That's
because no drug companies have the patent rights to LDN, and they are the
one's who put $$ into clinical trials. So I went to my primary care doc,
and he wrote me a script.
My HIV doc has been very "surprised" by my results over the last 4
months. I have done nothing else different since January besides LDN. I
am the biggest skeptic in the world, but I tried LDN, and my numbers have
improved dramatically. I believe that my improved #'s are completely
associated with the LDN. And to get to the meat of your question....I am
a drinker too. I have had absolutely no noticeable side effects from LDN.
I take 4.5 mg at bedtime. My advice would be to try it. It has helped me.
In fact, I hope that I never have to go on HAART again. Hope this helps
[From same person as April 21, 2005 message above]
Date: December 13, 2005
Subject: LDN-HIV viral load down, below 5000
I was diagnosed HIV positive over three years ago, in August 2002.
My infection was diagnosed early during the seroconversion period (the
antibody development period which occurs in the first 1 to 6 months of
Due to early detection I was enrolled in a clinical trial at the
University of Colorado, Denver, USA in September 2002. The basis of the
study was to treat the HIV with a cocktail of 5 medicines for one year to
see if the treatment could boost the body's capacity to control the virus
by itself. I was on 5 HAART (highly active anti-retroviral therapy)
medications taken every 12 hours (twice daily). I went through the year on
It was a tough year because the medications made me feel consistently unwell.
I went off this treatment regime in September 2003. My body was able to
control the virus for about a year, but then the viral load started to
climb so I went in search of information.
In December 2004, I learned about a treatment involving low doses of
Naltrexone (LDN) for autoimmune diseases. I learned about LDN on the
I made an appt. with my general practitioner doctor and asked him if he
would prescribe the LDN, and he did. I began taking 4.5mg capsules at
bedtime which is generally between 9:00 and 10:00 pm. each night.
My naltrexone capsules are compounded with lactose filler.
Within 2 months of starting on LDN, my viral load went down to below 5000,
and my T-cells increased by 50%.
I have been taking the LDN for one year now. My last doctor appointment
related to the Denver study was on December 6th 2005. I was informed by
the HAART study doctor that I was the only participant in the study
nationwide to do so well and I did not have to go back on HAART.
The only thing I did that was different to others in the study was start
taking LDN twelve months before the doctor's appointment so I am justified
in believing it is the LDN that made the difference.
If you look at it....my numbers (viral load) were going back up before I
started LDN. After starting LDN they went down. The doctor in Denver was
skeptical of the LDN but now hesitantly admits that it may have something
to do with the fact that I'm doing as well as I am. The downside of taking
HAART medications was they made me feel awful.
I have not experienced any side effects since starting LDN and I feel GREAT.
Since starting on LDN twelve months ago I have not taken any other
medications or nutritional supplements and I have not made changes to my
diet or exercise regime - which I'd say is fairly average.
Notation: There a different types of T-cells and they have different
roles. The T-cells referred to in this story are T-Helper cells, also
known as T4 cells and CD4+ cells: The level of T4 cells can be measured
via a T4 cell count test.
T-Helper cells are important. They signal other immune system cells to
fight infection. T-Helper cells are targeted by HIV which can cause a
decrease in the number of these helper cells over time. An immune system
cannot function optimally when there are too few T-Helper cells.
[From same person as December 13, 2005 message above]
Date: Thu, December 15, 2005 5:31 pm
Subject: Update with GREAT NEWS!
When I got into work this a.m., I had an e-mail from Denver: Viral load=2079!!!!
T-cells=500. (these are results from Dec. 6th) My doctor's goal is to keep
viral load below 5000, and t-cells 400+.
I've been on LDN exactly one year now. I have not taken any other HIV meds
now for 2 years, 3 1/2 months.
I'm very happy with the results.
My infectious disease doctor in Denver is somewhat dumbfounded. I keep
telling her it's the LDN. At least she doesn't say it's a hoax anymore.
Thank goodness my general practitioner here in Kansas City is open minded
and will prescribe it for me.
Date: Fri, 19 Nov 2004 05:59:20 -0000
Subject: Re: liquid LDN vs LDN in capsules -- my experience
I was on liquid LDN for years with great results (for HIV). When
pharmacists started compounding capsules, Dr. Bihari told me he had better
results from the capsules, as once you have a reliable pharmacist (an
issue for both liquid and capsule forms), you at least eliminate the
dosing irregularities of measuring the 3 ml or 4.5 ml dose at home. I have
done just as well with the capsules, and it's much easier, particularly as
Bihari wanted the liquid refrigerated and kept out of the light, which is
sometimes difficult when traveling.
LDN & HIV Interviews
In November 2001, seven of Dr. Bihari's HIV-positive patients who take LDN without antiretrovirals were interviewed by telephone. View excerpts from those interviews by clicking on the following links:
> E-mail of the month:Subject: LDN - Out of wheelchair under a week
Sent: May, 2006
UPDATE - January 2006:
First I'll relate a little more history to help you understand why I was happy to try LDN and why I continue to take LDN.
I am now a 32-year old male. I was diagnosed with Relapsing-Remitting MS in October of 2001.
I was on the CRAB drugs for nearly three years. I quickly deteriorated, particularly toward the end of that time - winding up in a wheelchair for 5 months, and 'legally blind' for 18 months.
Three months into my wheel chair nightmare (around May 2004) I was surfing the internet (which was frustratingly difficult with my now severely deteriorated vision) and stumbled across information on a drug called Naltrexone.
It appeared other MS sufferers were having success with the drug. As my condition had deteriorated on the CRAB drugs, I was tempted to try Naltrexone but concerned it wasn't a mainstream treatment. It's wise to be cautious so I read everything I could find. It took me two months to decide and to find a doctor who would prescribe Naltrexone.
In July 2004 I stopped taking the CRABS completely and started taking low doses of Naltrexone (LDN).
In less than a week I was out of the wheelchair yet still using the walls to walk and balance myself. Being determined, I began to exercise at home. I was soon able to stand-up whilst showering.
You can imagine how elevated I felt after noticing improvement so soon after starting on LDN.
In January 2004 I had started on the Swank diet, supplemented by a strict vitamin regimen. I kept up this regime after starting on LDN and I still use this regimen because I've noticed I just feel better all-round.
I am writing this in January 2006 after 18 months on LDN. I mow my own grass with a self-propelled mower and my vision impairment has improved enough that I have just been approved to drive during daylight hours.
I attend aqua therapy at the YMCA three times a week while exercising at home another three days during the week. I live alone and perform my own housework. I anticipate that in mid-summer I will start physical therapy.
Overall, I do very well managing the symptoms with the LDN. I can still have a bad day but my worst day now is much better than my best day pre-LDN.
During this entire time since my diagnosis, I have maintained the attitude that I would rather try and fail 1,000 times than never try at all. I am so thankful that I got off the CRABS and started LDN.
To any and all people that are still on the fence or researching LDN for their condition, I urge you to go ahead and start it now while continuing your research because I've noticed the majority of individuals who post to the LDN forum (with MS or other conditions) regret not starting on LDN sooner.
UPDATE - May 2006:
1. I added Magnesium to my supplement regimen in April 2006. Within 5 or 6 days it made my legs feel very heavy, like walking thru knee deep mud, and I was doing the wall walking thing again. At first I wasnt sure what had caused the change. I had been taking 800 mgs Magnesium at the time, so I tried reducing it to 400 mgs. The improvement was almost
immediate and I felt a lot better. Having said that, I continue taking 400 mgs Magnesium because I think it has helped with my muscle spasms. I haven't changed anything else - LDN treatment, Swank diet, exercise, and supplements remain the same.
2. For the past 2.5 years (thats right I said years) I have not been able to drive. However, my eyes have improved gradually and I got the BMV's approval - so today I am driving again! I am soooo happy because I've been relying on others to drive me places. I only went to the grocery store once a month because that was the only time someone
could take me. I sat in my house alone the entire time - only seeing people (human contact) once a week for a few hours.
I tell ya ... now that I have a car and drive myself places (and even though Im restricted to day time driving only) no one will be able to wipe this smile off my face.
My eyes had improved gradually with time - until the point I suspected I'd be able to pass the test so I went to see a doctor the BMV recommended. What do I attribute this particular improvement to? I honestly don't know. It could be due to one thing or a progressive improvement due to my complete regimen. Because I can't attribute my improvement to any one thing, I dont want to raise any false hopes.
From: Bill Roberts (email@example.com)
Sent: Thursday, March 9, 2006 5:54:35 AM
Subject: My Experiences with LDN
My name is William Roberts; I am 56 years old and was diagnosed with RRMS
in 1998. Several years later, my diagnosis was changed to Secondary
progressive MS. I have been on Avonex, Copaxone, and Rebif of the ABCRs; I
have had Plasma Exchange and Chemotherapy (Cytoxan), as well as many, many
rounds of IV steroids (Solumedrol). As late as July of 2oo5, I was
completely wheelchair bound, on oxygen 24/7, and could not do much of
anything on my own. I was having what I would call a new "episode" almost
monthly, and my condition worsened with each one. My neurologist, in
consultation with another top neuro in Birmingham, Alabama decided I
needed to start coming in every three months, regardless of my condition,
to have a week's worth of solumedrol. I told my neuro that I did not
believe the steroids were effective enough any longer to do more than
increase my already obese weight. I asked, at that time, if he would mind
if I went to another neuro for further advice, and he graciously agreed.
I did so and after having all new MRIs and MS tests run, my new neuro
suggested that I continue taking rebif for a couple more months to see if
I kept having new episodes, but to also prepare to go on chemo again. I
told her that I had read good things about LDN and had talked with several
PWMS who had improved while taking it. I asked her if she would prescribe
it for me. She said she had never prescribed it before but had read a
great deal about it and WOULD prescribe it for me.
At the time she prescribed it, I stopped taking the Rebif and started
taking 1.5 Mg [LDN] per day for the first week. After that, I went up to
3.0 Mg per day and have stayed at that dosage. I did not really notice any
real improvement for the first three months, but I also did not have a
single episode during that time. In fact, I have not had an episode at all
since starting on LDN. After three months, I did begin to notice that I
had more strength in my legs and arms, and my breathing also improved.
Over the next two months, I went from the condition I described earlier to
being able to walk without assistance, to breathe without assistance, to
drive again (after four years!), and, with increasing exercise, I have
reduced my weight from a high of 280 pounds to 232 pounds. My goal is to
get back to my prime weight of 195 pounds by the end of the year. I went
for my six- month check-up with my neuro in early December and blew her
away with my improvement.
She has since prescribed LDN to a number of other MS patients. In early
February, I had major hemorrhoid surgery that I had been putting off for
thirty years; I was really afraid it would cause me to have an episode
with my MS, but I also considered it a great test to see if my improvement
was more permanent than temporary. While very painful with a tough
recovery period, I am happy to say that I am almost completely recovered
from the surgery and I continue to improve where my MS is concerned, too!
I have been shouting to the rafters to friends and anyone who will listen
and look at the improvements that I attribute solely to my strong faith
and attitude, to LDN, and to my new neurologist's willingness to prescribe
it for me. Thank you for the opportunity to make these comments.
Sincerely, Bill Roberts
807 Gene Ed Circle
Sylacauga, Alabama 35150
Date: Fri, 3 Mar 2006 17:29:39 EST
Subject: New MRI
LDN has done so much for my MS, and just proved that to the new Neuro who
told me she couldn't take me on as a patient because I don't follow the
"conventional protocol for MS". We had quite a debate last week in her
office. She told me, "Go for an MRI, I'm SURE you have ACTIVE lesions, and
when we see that on the report, you must agree to start an IV treatment,
then we'll talk about going back to the injectables".....Needless to say,
I looked at her like she had 8 eyeballs, but agreed to the MRI for my own
curiosity, and told her I'd be crazy to change anything I was doing for
Well, the report is in. It remains exactly the same as when first starting
LDN in Sept. of 2002. Keeping in mind, my First MRI, in 1999 when dx. with
RRMS, showed 4 prominent lesions, the MRI's since LDN show only 2, and one
is difficult to see. She swallowed hard and said, "Your MS is doing
wonderful, nothing active, its not progressed, it's stayed the same" I
said, "Well, maybe now you'll read all the information I gave you about
LDN, and Oh, next time I come in, we'll discuss whether or not I want to
keep You on as My Neuro!" She told me to please come back. I told her I'd
think about it. She hugged me and I left. I'll give her some time to read
up on LDN and think about things, and decide if I really want to go back.
Anyway, I just wanted to share this with you. I have been a believer in
LDN since the day I started it in 2002.
Until There's A Cure.............There's LDN
God Bless You All
Date: Thu, 22 Apr 2004
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.
Subject: Re: LDN for Long Time Progressive MSers
Actually both my brother and I are spms and ppms respectively and like ~~~ 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 tracks.
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 onehundred and ninety eight (of ldn for ms)
Date: Wed, 5 May 2004
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 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.
Date: Tue, May 11, 2004 10:35 am
Subject: comment on the miracle of LDN and MS
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: Fri, 14 May 2004 09:02:54 -0000
Subject: An inspiring letter for us wheelies
Hi everyone, my net friend from Melbourne (Australia) sent this to
me, and im soooooooooo happy she did - Enjoy!!!!
I just wanted to share some progress with you. Seven weeks ago I started going to physiotherapy twice a week. The first day they did a lot of tests for 1 hour and noted the results. They did heaps of balance, endurance type tests and made me walk for 6 minutes straight. I was absolutely exhausted after it. I had to sit down about 4 times during the 6 min walk and I didn't walk very far (40 meters). I started taking LDN the day after I started physio.
Yesterday was my last day of physio and they did all the tests again. They could not believe it. All the tests were 100%. The things I could do were amazing. For example, I could put one foot in front of the other very close together, not hold on to anything and close my eyes and stand like that for 1 minute. Keep in mind i was very close to being in a wheelchair and the first time I tried to do that I lasted 1 second and nearly fell over. I did not sit down once during the 6 min walk and I walked 180 meters. I could have kept going I wasn't tired at all.
The physiotherapists assumed it was the exercise that I had been doing that brought me to that point but I know it was the LDN.
After my session I went to see their social worker and I told her about the LDN. She said she knows 4 MS people who are on it. All of them have had good results. One particular case that stood out was from a 39 year old woman. She had been in a wheelchair for 9 years. She was getting ready to go into a nursing home and was very depressed. The social worker was counselling her. A specialist she was seeing convinced her neurologist to put her on LDN. In 1 month she got out of the wheelchair and now uses a walker. She got her licence back and apparently drives everywhere. She also went to America on holidays to see her internet boyfriend.
Her life has changed completely and she is now going to America to get married and live over there. Nobody at the rehab clinic could believe it. I thought that was such an inspirational story, I thought you might want to hear it. That's the first story I've heard about a wheelchair bound person taking LDN and having such results.
I really hope you are doing OK and haven't had any problems. I have been reading all the posts on the LDN Yahoo site. There are heaps! I should have put this letter on the site but I'm not sure how to start a new thread.
Take care, hope you are well,
Date: Sat, 15 May 2004
Subject: Ok, finally - My 7 day report on LDN
Hello everyone - Im so very happy at this moment, and optimistic
about my future due to LDN, and after 15 years of MS, even during the
early stages when I was still able to walk with a cane, NOW I feel
happy and positive that im doing the right thing and this group has
lifted me up so much - like a big family.
Ok, my LDN progress report (im on 3mg, 11pm every night - crushed
50ml tablet in 50ml distilled water - measured out with syringe). I
have simultaneously reduced my Baclofen from 25mg 3 times a day to
half that, 3 times a day, I have maintained my Lipitor (statins) at
the same dose due to reports of statins helping MS - plus I have to
lower my cholesterol levels. I have also simultaneously reduced my
Aropax (paroxetine) anti-depresseants ive been taking for 3 years, to
half a dose in the morning - these are my findings/experiences so far:
In the first 24 hours, no noticeable change in flexibility,
stiffness/spasms, balance or energy levels except overnight instant
benefits after first dose, slept right through, and didn't have
bladder problems, incontinence to wake me up. Normally, before
LDN, woke up 1-2 times for toilet visits, and mostly, already leaked
on my 'protector sheet' just before waking. No problems on this
first night - My husband told me I was very quiet in my sleep and for
the first time in the time he's been sleeping with me, I didnt SNORE!!
On day 2, my head felt alittle 'high in the clouds' and the changes
and benefits began. Energy in the morning and during the day was
markedly improved, transfering into bed, car, shower, and loo,
quicker and more fluent without the need to concentrate on balance
and strength as much.
Day 3, every time I stood up out of my wheelchair, i wasn't bend over
like a L shape, I stood up straight and felt my back muscles working
stronger. In the shower, I have a shower chair i transfer onto with
grab-rails on the sides - and prior to this 3rd day on LDN, even just
shampooing hair or trying to wash my legs, feet, back etc i use to
hold on with one hand to balance and twist and bend to prevent
falling - NO MORE!!! I sat upright, reached the various shampoo/gel
bottles, soaps without holding on to rails, bent down to wash feet
very easily, and NO SPASMing due to the sensations of water
temperature/wash cloth etc stimulating the skin/nerves. No tight
banding feeling in the backs of legs when bending. Energy rating out
of 10? 8 - a very good 8. Normally, I would rate between 2-4.
Day 4 - So easy to dress myself (and please note, I do all my
activities from a seated position, with standing up intermittently
etc) Before LDN, when dressing myself, balance, spasms and tightness
prevented me from moving easily to get dressed and picking my feet up
to put shoes on, trousers etc was exhausting and stressful. NO
MORE. My body is more supple and alot stronger. My balance is
terrific, even with my eyes closed. Husband told me still no snoring
and the added bonus? I normally spasm and twitch and have been told
at a sleep clinic study I have restless leg syndrome. My Husband
told me I sleep completely still, no leg jerking movements anymore.
Day 5 - as well as all of the above improvements continuing, my
complexion has improved, skin is more smooth and soft (normally dry),
I have a radiant glow, and noticed my hair is looking healthier and
my nails stronger with more sheen? is that possible in such a short
time? they almost look like fake nails - normally they were chipping
and dull. Energy rating 8/10 again. No sleepiness or fatigue
whatsoever during the whole day. Very strange for me. I feel like a
Day 6, same - energy rating about a 7 this time. I was at work, and
by about 3pm, wanted a short nap, but not sleepy, more of a power nap
for about 20 min - to recharge. I still cant believe this is me not
Day 7 All good still. A strange hunger pang at 4-4:30am woke me up -
If i didnt find something to eat immediately - I was willing to get
into my car and go to the nearerst 24hr drive-through fast food - I
ate some left over pasta primavera from night before, once i ate, was
craving sleep again. It was funny. Energy rating during the day
9/10 - best so far. Getting back into my car after work in the
afternoon, I worked up a perspiration like i did a short aerobic
session - and it was a good feeling - I can't remember when I last
Day 8 (this day of reporting) Last night I awoke at exactly the same
time as previous night with the same intense hunger pang - I tried to
ignore it, and fall asleep again, but it was stronger than me and I
gave in after half an hour of trying to ignore it. I ate, and went
back to sleep immediately.
In looking back on the last week, I am an extremely happy and changed
woman. Im staying on LDN at 3mg for at least another 2 weeks as it
is extremely well tolerated, and then i will consider whether to up
the dose to 4.5mg.
During the last 7 days on LDN, I have still had spasms in the initial
stages of getting our of bed in the morning - and after half an hour
of alittle tightness in muscles in the morning - all subsides. I
will be going to the doctor to get 10mg tablets of Baclofen now, as
the 25mg are not needed.
The only other time i have tightness and stiffness is after sitting
at work (data enter all day), without standing or being active - I
notice my poor legs get stiff as i get back into the car - as they
haven't been moved all day. My fault for not standing and
Seeing in the last 6-7 years I have had stiffness and difficulty
reaching, moving, standing etc without spasms - truly, this
little episode in the mornings and afternoons getting back into my
car is NOTHING compared to what im use to.
Ok, next report will be only if there is another significant change
or problem ( I doubt that very much). thanks guys,
Date: Sun, 16 May 2004
Subject: MRI One Year After LDN & the National MS Society Article
I agree completely. I have given my last penny to the MS Society. All future
donations from me will go to the Myelin Project, since I believe they will be the
organization that will find a cure for this disease when all is said and done. The
national MS Society is in bed with big pharma, whose drugs and shots seem to cause
as much, if not more, problems for MSers than they do improvements. My wife has
been through two CRAB drugs and we both wish we had that time back. She just last
week had an MRI one year out after starting LDN and her neuro was stunned at the
results - nothing new . . . no further lesions or deteriorations. He had planned
to recommend starting another interferon, but was man enough to just scratch his
head and admit that he now had no foundation for doing so.
Date: Tue, 18 May 2004 13:14:24 -0000
Subject: Progress Report...
First I want to say thank you to all the members, for all the info that this site gives to people like my husband and myself. Because of this group I told our Neuro Dr about LDN and he checked it out and at the next visit I asked him for a script for LDN 4.5 mg. My husband is the first MS patient that he gave it to. He has been on it for 4 1/2 weeks and yesterday he jumped off of his lounge chair and walked down the sidewalk looking like nothing was wrong with him. He almost always uses a cane or holds my hand. I am
so greatful to Dr Bihari and this site.
Big Hugs to You All!
Date: Fri, 21 May 2004 19:53:13 -0000
Subject: Six Month Report
ok gang... here goes... been "lurking" here for about seven months... first month collecting data to make an informed decision... last six months on 3mg LDN... results have been awesome...
i have had ppms for over twenty years and have been doing chemotherapy with high dose cytoxin every two years since 1985... supressing the old immune system... putting out a fire that never went out... started out as part of a clinical trial up @ harvard in boston... was ready to do chemo again in october, 2003... neuro wrote the order... oncologist appt was scheduled... decided to try LDN first... no trouble getting rx... doc said "it can't be worse than chemo"... LOL...
felt something right away... balance was better... walking was better... spasticity was better... bladder was "way better"...
had the weird dream thing for the first week or so, but it stopped and so did the getting up a "gizillion" times a night to go to the bathroom... restless leg syndrome gone... yeah God...
six months later, you would be hard pressed to tell i have ms... walking without a cane or a wall... i can even almost run like a "drunk"... LOL... family and friends can't believe it...
so thanks to all who have posted here... and a special thanks to a ms'er with alot of positive input, who told me i needed to post and get involved... LDN rocks...
Date: Sat, 22 May 2004
Subject: LDN -URGENCY
It`s been heartening recently to see all this energy being put towards causing LDN
to become more widely appreciated & more easily available: However, I`m wondering if
there is another tack which could be developed to help bring this about? -So far as
I am aware, the focus at present seems to be on how bring about controlled tests,
presumably with a number of folks taking LDN & a number taking a
placebo....well!..... - hands up all those LDN users who would like to spend some
months (-or years even?) in the placebo group?!!!!!!!! -not many, I imagine!
In my view, knowingly to place people who, like us, have a degenerative, or in some
cases, an immediatally life threatening dis-ease, on a placebo, when it is known that
LDN "works" would be clearly unethical.
Further, why is it necessary? LDN is already known by us, its users, to be
effective, safe, easy to use, inexpensive & to have little if any in the way of
negative side effects: By all accounts, completely outclassing the currently
approved, (obscenely expensive) medications! Surely, with a drug that is already
accepted by the FDA as safe at over 10-20 times the LDN dosage, the safety issue has
already been resolved!
Regarding it`s effectiveness, seems to me that are already a lot of us who can & do
confirm that! -I imagine that I am not the only one who feels there is something
wrong with a system that is so insensitive that it can`t or won`t be more responsive
to our enthusiastic testimonies? The easy dismissal of such a large body of
consistent experiental first hand knowledge as merely "anecdotal" seems almost
insulting & is certainly complacent, insensitive & unwise! - Prehaps we need to
focus more on way(s) of "Speaking with one voice." -Could it be that it would be
more appropiate for us to focus on getting a (loud!) message out that makes these
points widely, clearly & strongly, rather than meekly calling for tests, as though
we are ourselves are unsure of the real value of LDN?!!
WE ARE THE TEST RESULTS!!!
(& I think that there are enough of us to be heeded!)
There is little, if anything to be lost & potentially a great deal to be gained by
very many people who, RIGHT NOW are in the throes of degenerative & terminal
dis-eases, people who cannot afford to wait while some basically unnecessary, time
consuming procedures are carried out!
If any of these points do strike a chord, & you feel that it`s appropiate, (I`m
thinking especially of those who have recently shown yourselves to be such capable
thinkers/letter writers/ organizers/ developers/ movers & shakers/DO-ERS,
etc.etc.!), prehaps you could consider how this might be carried out effectively?
Do we LDN users (-ie, the ones who actually,experientially know what it does!) need
to be focused & organized more as an information disseminating & motivating "body"?
Thank you for giving these thoughts your attention.
Best wishes to you all,
Date: Tue, 25 May 2004 00:54:40 -0000
Subject: Re: LDN Dose
You need to go up to about 3.0mg or 3.5mg. If you do well on these then go up to
4.0mg and then up to 4.5mg. If you feel 4.5mg is too strong then back down to
3.0mg, 3.5mg or 4.0mg and hold at whatever dosage you feel best at. My neuro is
waiting on me to crash also but it isn't happening. Next month I will have been on
LDN 1 year and haven't had one single sign of an exacerbation or progression. I was
dx'd as chronic progressive in 1989. I can feel that my progression switch has been
turned off by LDN. It's a weird internal feeling that's much different than before
my LDN usage.
Date: Tue, 25 May 2004 09:05:39 -0600
Subject: Re: Re: regarding the letter
If you don't mind I would also like to add my
"Two Cents". I am not a professional by any means. However, I have been
diagnosed with MS since 1984. Since that time I have been under the care of
the neurology dept. at the Lahey Clinic in Burlington, Ma. I had the same
doc for 16 yrs. until she retired 3 or 4 yrs. ago. Back in 1984 there were
no treatments for ms other than steroids which I refused to take. Some time
in 1986 or 87 the "Beta-Serons" became available. I also refused those due
to the "Fine Print" or so-called side effects.
Formal studies now conclusively show that these treatments
are marginal at best and still in fact produce adverse side effects for many
that take them.
Two yrs. ago I started looking into "LDN". It took me almost a year to
finally decide to take LDN. I have "Primary Progressive MS". The very
first night of taking LDN the following occurred: 1. Increased sensation and
lessening of numbness in my feet and ankles. 2. Increased leg strength and
improvement of balance. 3. Significant lessenoning of urinary urgency and
frequency. I had to get up ONCE during the night to urinate, it had been
3-5 times every night for several years.
No further improvements have occurred other than the fact that I have not
gotten worse with anything in the past year and those improvements mentioned
have remained constant.
I have been in touch with several hundred ms'er's that have had similar
experiences. The simple fact of the matter is that I personally experienced
more improvement in one day than I had experienced in 19 yrs. of recognized
and accepted medicine. The only adverse side effect to date was 1 week of
sleeping pattern interruption.
My questions to you are: 1. Why such incredible resistance to this
harmless and inexpensive solution for so many? 2. When will the "Experts"
at least take a look? 3. Could the answer be "Pride" or the lack of money
"PROFESSIONALS BUILT THE TITANIC....AMATEURS BUILT THE ARK."
Date: Fri, 28 May 2004 11:16:44 -0400
This is a copy of the letter I sent to PubMed. While there I checked out what
clinical trials are being performed. They are doing trials on low dose naltrexone
Hi, I am a person with secondary progressive multiple sclerosis. I have started
taking a low dose of naltrexone. I was headed for a wheelchair. I used a walker and
have used a cane. I have Optic Neuritis.
I no longer use a walker or cane. I can walk on my own for 1.5 km. My Optic Neuritis
of 5 years is 99.5% gone. Better bladder and bowel functions and no fatigue.
This drug needs a clinical trail or word put out to doctors that this is a good
treatment for ms. I take 4.5mg of Naltrexone for MS. It has surprised my doctor and
pharmacist. The information about this use is found at www.lowdosenaltrexone.org . I
hope you will consider sending this information to some one to do some clinical
trials on it.
From: Dr. M. R. Lawrence [Swansea, UK], firstname.lastname@example.org
Date: Sat, February 8, 2003 4:24 pm
Dr Bob Lawrence: Dietary Research Ltd
I have been using LDN for about one year, primarily in the treatment of MS. I presently have about 200 patients on this treatment, apparently with great success.
From: Dr. Skip [Skip's Pharmacy, Boca Raton, FL ]
Date: Thu Oct 23 18:21:35 2003
As I have said before, if I had MS, the only Drug that I would absolutely be taking is LDN. I wouldn't care what it took, or who I had to insult. In 4 years of dispensing LDN, with over 10,000 patient months, I have heard of only three cases of exacerbation. I am waiting for our new resident to come in and I will have exact numbers, but this is truly a no-brainer. I would find some one to prescribe it no matter the cost or effort.
Note: For previous postings regarding MS and LDN, see:
Primary Lateral Sclerosis and ALS (Lou Gehrig's Disease)From: Gary
Date: Wed, November 17, 2004 10:41 am
This is what I submitted [to the] newsletter of the Motor Neurone Disease Assoc. of Victoria:
LOW DOSE NALTREXONE (LDN)
LDN is a 'new' treatment which is helping a lot of people with such diverse conditions as MS, ALS, Parkinsons, cancer and even AIDS. It has actually been around for many years but is catching on fast now for these and other conditions.
Naltrexone has been used for treating drug and alcohol addiction, but that is at 50 mg per day or even higher. LDN, as the Low Dose part of the name implies, is only 3.0 to 4.5 mg per day and seems to kick the body's immune system into action and regulate it. There is not space here to go into detail but there is a very good website all about it at www.lowdosenaltrexone.org. If you don't have a computer with internet access I suggest if at all possible you find someone who has, or use your local library because LDN seems to hold more hope for people with MND than anything else at the moment based on my own experience and that of the three others with MND who I know of who are taking it.
In my case I have been taking it for about six months now and the most noticeable improvement is in my walking (with walking frame) because I now don't drag my toes anywhere near as much as I did pre LDN. No improvement though in speech.
The three others I know with MND [of whom two have definite diagnoses of ALS] who are using LDN:
A: MND for 7 years. No real area of improvement on LDN but most importantly, no deterioration in several months taking it.
B: MND for 10 years. Has tried other things such as antioxidants, minocycline, celebrex over the years with no noticeable effect. On LDN for 6 months, excited with results. Stronger neck muscles, swallowing improvement and progression all but stopped.
C: MND for 8 years: Using LDN for 2 months, noticeable improvement in strength, moderate improvements in speech and breathing and as a bonus the end of a long term mucus problem. No deterioration in the two months but would normally not really notice any over that time.
Two of the three also said that several people have commented since they began LDN on how well they are looking (as has also happened to me). These results and those I have read about from many people with MS (most of whom had no success with the normally prescribed drugs for MS) are admittedly all anecdotal and as such will be dismissed by many, especially in traditional medicine. However, sheer weight of numbers of successes is becoming difficult to ignore and it is not as though we really have anything else for MND!
Please note that I have no medical training whatsoever and therefore cannot advise, rather am someone with MND wanting to share news of something which may be of benefit to others. Please if you can read all the information on www.lowdosenaltrexone.org and make up your own mind. If you have email it is well worth considering joining the LDN Yahoo Group to read lots of emails from people using LDN (mostly MSers) in order to make a better informed decision as to whether or not to give it a try. The only potential downside to that is a very active group with 30 - 100 emails per day.
ALS and PLS (2007 Update)Update Report From Gary C in Australia
Date: Mon, January 1, 2007
Updates I have for motor neurone disease, specifically ALS and PLS:
Of the three people I originally referenced in my 2004 article on LDN for ALS the following are the updates:
A: Decided after a while that it didn’t seem to be helping so no longer takes it. As far as I am aware he was not getting it from a recommended supplier and didn’t give it the full 9 months (I have emailed him to check those details further but no response in over a month).
B: Was already very significantly disabled when he started LDN (no use of arms etc so needs help with everything). Even though he thought LDN was great and helped him significantly once he made it to see his only child married he decided to come off it and let nature take its course. His comments were “As far as LDN is concerned, it is hard to imagine that it is a coincidence that when I started taking the drug I got some improvement and plateau for more than two years and now that I have stopped it my MND has accelerated rapidly. Would I recommend other MND sufferers try LDN? Bloody oath!!” (that being very Australian for MOST DEFINITELY!!).
C: LDN has definitely helped in various ways plus slowed progression. After 1 yr: I find that it helps by getting rid of a long standing problem with mucus, allowing me to eat more variety and by strengthening my neck. Best of all, I feel more robust (relatively) and people say it too. I am a little weaker overall but when I went off it I was a lot weaker! After 2 yrs: "I am definitely weaker than I was two years ago. Fortunately I can still eat just about whatever I fancy but I somewhat suspect that it’s only a matter of time before I’ll have to consider a feeding tube and that’s something I’m not yet ready to take on board. I’m still on the low dose Naltrexone treatment but it’s magic powers seem to have diminished. However when I went off it I was even weaker so it’s good to know that it’s still helping."
There are others I know who have tried LDN for ALS and found it didn’t help but I don’t know whether they were getting it from a recommended supplier or how long they tried before giving up. Probably worthwhile emphasizing again at this point that especially with such an aggressive disease as ALS it is very important to a) give it at least 9 months b) get it from a recommended supplier and c) not set expectations too high i.e. don’t necessarily expect improvement but eventually a slowing of progression.
There are a few more people with ALS on another group I am on.... One of them currently says “I have taken 1.5 dose every night for about a month and have improved night time CO2 levels. I have noticed no falling off in strength to my upper body and a slight improvement in foot drop when I am walking. A slight improvement in swallowing and great improvement in sleeping and lack of worrying, I would continue to take it just for the two latter benefits.”
Moving from ALS to PLS (Primary Lateral Sclerosis), indications are of a high level of success.
Person A: I’ve had PLS symptoms since 1996, diagnosed in 2000. I got my walker in 2000 and that's when my speech started being affected. In March 2004 I started taking 4.5mg LDN. My neurologist would not prescribe it, so my husband did (he's a doctor). Within the first month I noticed changes. My hands were more coordinated, my toe wasn't catching on rugs, etc., my startle reflex was less and so was my emotional lability. I stopped having to get up at night to use the bathroom, no more urinary urgency. My speech improved somewhat. After 1 year my neurologist saw no progression. I never told him about the LDN.
I had a baclofen pump implanted to try to improve my walking. Stopped the LDN for a week and then restarted. The pump has given me some improvement and I think I'm better with it. In early 2006 I was going to PT, had improved quite a lot. I was walking with just a cane and getting stronger. Then in March I tripped in my kitchen and broke my hip. Stopped taking the LDN for 4 weeks while on pain meds, then restarted. In June I was out of the LDN and my husband suggested I stop it for a while.
In the last 6 months I have progressed. I should have stayed on the LDN. I saw my neurologist recently and he confirmed I am worse. I asked if he would prescribe LDN. He said he would be willing to prescribe anything if I could bring information to him about clinical trials, which I can't. My husband can see I am progressing again and will prescribe it again.
So, I took it for 2 years, had improvement with little progression, stopped for 6 months, have gotten worse and plan to start and stay on it this time.
Person B: I started LDN at 2.5 mg from Skip's Pharmacy as of 7 weeks ago. I have to say that I was NOT expecting any changes or improvements at all. I WAS hoping that it would put a halt to my progression and I fully expected to encounter the common temporary side effects of insomnia and increased spasticity. But, with the very first dosage, I noticed some improvements which have continued to date. Needless to say, I am very pleased with my responses to LDN so far.... I will describe what I feel are the main four results to date (three positive, and one I don't quite consider "that" positive considering my age) which I have encountered on LDN.
I was diagnosed with PLS late 1997... After my diagnosis I seemed to progress fast. I started using a cane in early 1998. I was still working but I finally had to retire on disability mid 1998. By September I was using a 4 wheel walker. Every time I went to see my neurologist his conclusion was that my muscle strength was good but I had extreme spasticity.
I first started on baclofen in September 1997. [I got] a power wheelchair about 5 years ago for outdoor excursions, although I still use my walker inside the house (albeit at a much slower walk than I used to).
This past year I have had an increase in spasticity after being on a plateau for the prior 5 years. This has resulted in extreme stiffness in the morning before my AM meds took effect and was noticeable throughout the day as well, but it was causing me major difficulty in turning over in bed at night ....
I found an alternative medicine doctor who wholeheartedly endorses LDN. As he puts it, "LDN is a no-brainer, so I will certainly put you on that." which he did. He has approximately 20 people on LDN ranging from Alzheimer's to Parkinson's. His only patients who haven't responded to LDN are those with Chronic Fatigue Syndrome. He is very excited about the Crohn's study and the results that Autistic children on LDN are getting.
The 1st positive result I saw after taking my very first dosage was a REDUCTION in spasticity at night and in the morning before I would take my AM meds. ....LDN has, for me, been better than any kind of muscle relaxant I have tried. Totally contrary to what others have experienced and totally unexpected by myself as well.
The 2nd positive result I experienced on LDN started after the 2nd week. ....now my allergies are SO much better. After 8 weeks on LDN I only use 2-3 tissues in the morning, maybe 1 after breakfast, 1 after dinner, and 1 before bed. This is another totally unexpected result.
The 3rd positive result I've experienced was an improvement in breathing at night while sleeping, which started after week 3 on LDN. I think I have a much deeper sleep during the first half of the night as well -- much less dreaming -- and I don't do as much turning over which used to interrupt my sleep more.
The 4th result I have noticed (and not all positive to my way of thinking) is a re-start of my female hormones when I thought I was truly and surely entering my menopausal year. ....So I was quite surprised when after being on LDN for only 4 days I noticed that my hot flashes had disappeared (I still have not had a recurrence of them which is really nice!). .... However, I also started showing other signs of an impending period coming on.
I would be remiss if I didn't mention the adverse side effects I've had since starting LDN. First, I was extremely sleepy all of the time for the first 10 days of taking LDN. I really think it affected the other medicines I take, and prolonged their side-effects. Anyway, my body got used to it after that (just like you have to adjust to baclofen when you first start taking it) and I've had no problems with sleepiness during the day....Second, some nights I had an inability to go right back to sleep after turning over in the night. It has happened about 10 times in 7 weeks -- ranging from 20 minutes to 2 hours. Third, during week 5, I started to have a feverish feeling (but no fever) with hot cheeks and burning eyes which quit during week 6. Now, on average, it reoccurs every 3 to 4 days but now it is not as strong a feverish feeling. Forth, the weight gain, of course, but I mark that down to water retention although I don't have swollen feet or ankles. [But,]...I am more than pleased with my results so far.
....Update: I've been on LDN 4 and a half months now, the past month at an increased dosage of 3.5 mg. Everything I said in my introductory update still applies: much reduced spasticity at night, much reduced allergic reaction to baclofen, and improved breathing at night. The re-start of my female hormones proved to be true, as well, since I've had 3 menstrual cycles since writing that last letter -- the first one starting that very night!
The adverse side effects I mentioned have all disappeared, even the weight gain - I'm back to normal weight, just gaining during my monthly cycles due to water retention. The only changes I've noticed since my last letter are as follows: An increase in spasticity upon arising from a nice warm bed for the trip to the commode first thing. Since the advent of cold weather, here in Colorado, I again find it hard to "hurry". The one morning my husband got up early and turned the heat up, I had no problems upon arising an hour later. Other than that, I "think" I have a tiny bit more balance (I can pull my pants up or down while dressing and undressing without the need to lean against something for
balance) and more flexibility (especially noticeable in the morning when trying to bend over to pick up something I dropped on the floor while I'm sitting on the bed, and also evident during my stretching exercises).
Person C: I started LDN mid 2004 years ago. I'm at 4.5mg, but go back and forth with same results. I didn't notice miraculous results right away, maybe a little more energy. But what I did notice, and what has sold me on LDN is the fact that I credit it for slowing, if not stopping the progression of my PLS! When I started it I felt that my PLS was progressing rather quickly. At the time, I noticed that my hands were getting more and more stiff, they're not that way now. So I guess that LDN has also given me back my hands! I know that it effects everyone differently, as does PLS, but it's definitely worth a try! Just be aware of where you are symptom-wise when you start LDN, then see where you are a month later. Like my neuro says, "If it doesn't hurt you, it's worth a try!" He also thinks that the LDN has helped me.
Person D: Approximately 10 weeks ago, I began taking LDN and I can say something is happening and I really can not put a finger on everything I think is taking place since I began. One of the first things I noticed was my energy level improved. I do not sleep as much as prior to beginning on LDN. My skin under my finger nails has turned pink and healthy looking vs. looking white and sickly. My finger nails and hair seems to grow twice as fast as before. I am a type II diabetic and my sugar count has plummeted and my doctor has removed me from one of my insulin's which I took twice a day. I can now sleep all night with out having to get up every two to three hours to go to the bathroom and the urinary urgency as I lived with for a long time.
Primary Lateral SclerosisDate: Wed, 3 Mar 2004 17:32:10 -0800 (PST)
Subject: Re: optimism
I am taking LDN for PLS (Primary Lateral Sclerosis). It is a rare form of ALS, not fatal. It is an upper motor neuron disease. I have been on it since Jan 19. I believe my progression has stopped, and many of my symptoms are less intense. I'm glad you're helping spread the word. It could help soooo many people.