A Page of Reading on Low Dose
Naltrexone and MS


                                                       bcmeikle@shaw.ca   Updated Nov 24,  .2007
                                                                 (started November,03)

Disclaimer: I am not a qualified health professional. This information is collected here for
other patients like myself who want to learn.
********************************

      There is not enough work done in this area. Dr. Bihari's work needs to be

replicated over and over, and a lot more publishing and tests need to go on.

      The first page for anyone to read when looking at this  topic is here

This is Doctor Bihari's page of information and findings.(although he's not directly linked to it)

 The specific area for MS and LDN  is here .
   

           So if you've read that far, you see a claim of 98% efficacy in MS treatment. (Actually that

claim has now been taken down)  These numbers are not even backed up by the anecdotes I've collected,

but there's still a LOT of success. A useful repository was collected   at remedyfind   (07: but the site has

now been purchased by new owners who took the LDN info down)...
         
            As I write this up,LDN is the number one medicine there for people with MS.

It has been the number one on this page for 3 years now. This is clearly misleading, but it shows  the support this medicine is getting

from patients. (this repository is gone)

 note nov 07: Some of the below links have gone stale. I'm off on a 6 month trip around the world and don't have time to update
all of them. I will however paste 3 groups of modern (07) links people have sent me at the bottom of this page.

           So, we have support from patients, and some  anecdotes, is that all?

I find this quote from a pharmacist supportive:

As I have said before, if I had MS, the only drug that I would absolutely be
taken 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 wainting for our new resident to come
in and I will have exact numbers, but this is truely a no-brainer. I would
find some one to prescribe it no matter the cost or effort.
Dr.Skip



...and these two mp3 radio interviews(turn down your volume!): first part , second part
(these are in written form here   and here


A VoyForums discussion group.
A yahoo discussion group
Yet another discussion group.

What are endorphins ?

It looks like the British are replicating Bihari's work nicely.

A real test by real scientists on LDN and Crohns ...

Here's a paper by Christina White on LDN and MS .

So is this work being replicated and used elsewhere?  Sites like goodshape suggest it is. Another page there.

An article on the Irish government's interest in the cost savings associated. Would they back a study?
What other governments/ agencies would gain from a cheaper,more effective MS medications, and would back
a study?

An article on other re-use of existing medications for MS

Endorphins and chili ? and TV ? chemical structure ? and stress ?and acupuncture ?
and excercise ? and the chemistry of sex ?and Birth Labour ...
Here's a paper on Endorphins and Anelgesia

Here's a paper on ultra low dose naltrexone


These guys are selling a drug that claims to boost your endorphin levels...
same with this ...

Alternative medicine's look at how endorphins restore balance in body ...


Naltrexone's battle to become a treatment for alcoholism .

This page has a list of Healthy ways to raise beta-endorphins

Dutch   site on LDN (english paragraphs too...)




PAPERS


I am not a  doctor, this is just patient-to-patient info.

If we look at a list of Bihari's claims, the first is that people with MS have fewer endorphins.

In this paper, Italian Researchers look at endorphin levels in relation to MS in a scholarly, scientific way.
this paper is recent and important...


So if MS patients don't have enough endorphins, does that mean that the petuitary gland that makes
them is broken in people with MS?


Dysregulation of the hypothalamo-pituitary-adrenal axis is related to the clinical course of MS



So LDN tricks the body into creating a lot of endorphins.  
But endorphins are mostly known for their painkilling, euphoric nature, they don't
actually balance the immune system do they?


Enkephalins are a kind of endorphin
.

Another paper :Enkephalins, brain and immunity: modulation of immune responses by methionine-enkephalin injected into the cerebral cavity.

The animal model of MS is EAE. (experimental allergic encephalomyelitis)

This paper discusses
Changes of experimental allergic encephalomyelitis by methionine-enkephalin injected into lateral ventricles of the rat brain.

This paper discusses Enkephalins and immune inflammatory reactions.

Another paper looking at Enkephalins and autoimmunity
 
another

Rat behaviour studies. Escape attempts.
 I had to include this because it talks about 'learned hopelessness'
something I worry that many MS patients have...



The pituitary gland makes our endorphins...
 

THE IMMUNOMODULATING EFFECTS
OF SPECIFIC OPIOID ANTAGONISTS
AFTER THEIR INTRACEREBROVENTRICULAR APPLICATION

A google search on endorphins and immune modulation
All articles at medline by Jankovic and Maric

LDN addictive? This paper says no. Unlike drugs, however, activation of the opiate receptors by the body's endorphins does not lead to addiction or dependence.

Cool looking book on NeuroImmunoModulation



conclusion:
I personally feel fairly confident that Bihari's claims may be true.
I would guess at more like 80% efficacy though, from the anecdotes.

Perhaps there are some patients whose petuitaries are atrophic or damaged
so even with the naltrexone tricking the switch to' on'
 the glands can't produce more.

From the literature,I'm fairly confident that MS patients have lower endorphins,'
and more dysregulation in the petuitary.

It seems certain that boosting the endorphins will relieve pain, provide euphoric mood, and in general, make the patient happier. Bihari's regimen seems to do most of it's mind altering while the patient sleeps so the patients don't feel stoned while they're awake. But we ARE mucking with the brain's natural opium.

Will it stop MS progression?That's the interesting question. There is a body of work that suggests an immunomodulatory effect of endorphins. Most of the MRI's are coming back with no change...

The  tests on Crohns are a good thing.

I'd like to see the same for MS.
 
Time will tell...


Addendum(Dec.12 2003):

I found a few new papers.

The same Italian team that published the paper on endorphins and MS above
published a paper on an increase in endorphins in people on interferons

A paper on endorphins and their flow seasonally in lambs...

Chris supplies some great references regarding circadian links here...

Here's an american paper that measures the immune systems abilities
with added endorphins...
It's good to know that rather than just eae there is  murine coronavirus

More h/p/a axis stuff, and this

the immunomodulatory effects of some opiate antagonists .
 

 Test your endorphin levels.


Got feedback? I have a discussion forum . with a thread on LDN


 Here's Bihari's Pa tent on LDN and MS

There are 2 new collections of anecdotes. One here and one here .

Also I had to write a disclaimer/skepticism/doubt page.

Are endorphins really created between 2 and 4?




Addendum 2 March 2004



After trying for months to justify it rationally, I finally tried LDN. 'What the heck'
I thought. I seemed to be getting noticeably worse on the interferons...

It's working well...Noticeable improvements: L'hermittes shocks I was getting
almost every five minutes totally went away. They had me scared, now I feel calm.
Energy seems better, especially around dinner.
(mornings might be a little groggier) Sex life improved. Vision might be a bit better, especially after heat (like jogging)

Even if it's only my symptoms it's working on, I don't care. I'm staying on the ldn. (the fact I'm staying on my rebif too
has caused some contraversy...)

Here's a new polling page for people on LDN...





Addendum 12 April 2004



It seems that LDN is gathering momentum all over the world. I think we will see studies soon,
and coverage by insurance companies and national health care systems for LDN.

 I can see it being in Mainstream, common use in about a year... but already there is enough evidence for
any GP to try it... it has been FDA tested at a far higher dose so under 'do no harm' it seems safe...

Hundreds of doctors around the world have prescribed it for MS patients by now... once results
are collected of it's fantastic results' and they are published and given as presentations at conferences, the word
will spread fast...

another clinical trial on ldn and crohns...

There is a large petition going on to have LDN studied...

This article in the Herald in England calls for government coverage, and studies...

MS may not be an auto-immune disease. This would mean that LDN's immunomodulating effects
aren't as important as it's effect on glial activities.

BarbaraB thinks MS may not be viral or toxin caused, but developmental.
Apoptosis(cell suicide) of oligodendracytes may be a programming error in those cell's development path. We
know that some cells, like the webbed fingers we have in the womb are programmed to self destruct.
If these programs have errors, MS can occur?

the bad news on this is one might have to solve problems like 'when organisms go through tranformations
like apoptosis, where are the progams stored, and how can they be read and debugged?' I think this is going
to take a while...is it in the dna? or in morphic resonant fields? 

This paper (last 2 sentances) to me is science proving that naloxone (naltrexone same) has an effect on glial activities...?





Addendum 21 May 2004

I'm a little discouraged because the noise on LDN has gotten very loud,
around the world, but still only studies on crohns and ldn. Do the powers that
be actually want to relieve suffering and help?

There are rumours now of an
LDN/MS study in israel, italy, south texas, and ireland but nothing I can link
to..

A totally ignorant statement from the NMSS and this response from patients ...
 
A great paper looking at apoptosis under low dose opioids...

lots of great general articles like this one and this one ...or this

A good paper on EAE and opioids ...

This paper on blocking the opioid system with naltrexone, some work on uldn ...

at higher doses it seems to help your sex life...unfortunately most things it does at
high doses it does the opposite for at ldn levels...

chemistry on naltrexone and naloxone. ..


Two html versions of a Bihari interview. Part 1 and part 2 ...
-------------

Addendum Oct  12, 04

Well I had a great summer and started denying I even have ms, so this hasn't been updated,
but the ldn time has been an interesting learning experience for me. While reports of patients who
are having great success with the drug still proliferate, clearly what patients say about how they're feeling
doesn't seem to matter much! The doctors and drug companies that rule the roost in MS increasingly remind
me of priests in the renaissance insisting the earth is flat.

We still get statements like this from the multiple sclerosis society in britain that insist that ldn can't work
because it doesn't supress the immune system. (watching my wife and I battle the colds kids bring home from
school lately, her doing poorly, myself passing them effortlessly I can't tell you how great it is not to be supressed!)

 
Not on LDN but anyone with mild MS should read this from the mayo clinic.
 
a doctor's information kit .

An intereting book on the experimental evidence for immunomodulating effects of opioids  

 Ldn's successful clinical trial for irritable bowel syndrome.

A perhaps crazy german doctor has discover the opiate/immune connection , and is telling people to take 50mg
His page/discussion is here if you speak german

The british research trust on ldn

A great site called LDNers ....  

The apoptosis model has gained a lot of support in the last few months, and is generally explained by there being
several kinds of MS, one of them being driven by apoptosis. An enzyme is inferred that causes this... and researchers have
forged ahead trying to block that enzyme.


Addndum spring '05
  
A study!

A paper in a journal!



Addendum Oct  25, 05


A large conference on LDN has happened.

My personal confidence in this remedy has been shaken, by my clear progression.

I wouldn't go off it however, since I never want my L'Hermittes to come back.

I now see it as an important part of my arsenal to fight MS, not the only weapon.

I'll admit my faith in science has been shaken. Even 2 years later, it seems that

success is plus or minus about 80%. In general it looks like 70% of people get some

symptom relief. About 30% are responders who have major improvements.

Claims of LDN stopping progression are heresay at best. Even knowing what progression

really means seems highly subjective, but counting lesions and measuring volume is

a fair bet, and we're still waiting for results on this beyond a few anecdotes. In my own

case I have 25% more lesions today than 3 years ago and I've been on LDN for 2 years.






Addendum April 26,2006


Just back from a weekend skiing at Whistler. Really, my MS rarely enters my life these days
although I'm still a bit blind under hot or cold temps. I could ski well enough but it was hard
keeping track of kids...
I haven't really been keeping up, because I basically forget that I have MS...

On the LDN side the second conference happened in Washington.
I really love the quality of this excellent quicktime movie on LDN. (FinalCut pro?)
Dr Crowley, a GP from Ireland is showing how average GP's asking questions can make a difference.

And it's great to read this article on LDN in PUBMED!!!!





Addendum Nov 24 2007



    Just a note. The progression noted on my mri two notes above here was perhaps misinformation!  I finally got a look
at the mri, and even to a layman's eyes it was completely different than my first. The first had 15 obvious blotches, it
'lit up like a christmas tree', while this was almost clear of such markings. The only white on the scan that I could take
note of was a rim around some of the larger areas, a fine white line. Why would my neuro tell me I had clearly progressed
and not show me the images, and let me go for two years believing the LDN wasn't working? I can only conclude that
he was very busy and distracted.
         A recent talk I went to where a neuro told the audience that LDN caused pain got me angry. I've followed patient
reports for years now, I've heard 'too mild', 'no effect', 'a homeopathic dose' but NEVER in perhaps 10,000 reports has
anyone mentioned that LDN caused pain. I can only conclude that both of these practitioners were WAY OUT OF
LINE, and are abusing their credentials to spread misinfomation because they have some hard-wired agenda they are trying
to bring forth.(albeit subconsciously)  Note to Pros: If you know nothing about LDN, perhaps saying 'I don't know' is a
good answer, rather than manufacturing and obscuring truth so it will better fit with your scientific 'religion'.
           On the up side, the studies are building up.  2007 A Banner Year for LDN Research
     will take you to the LDN clinical trials page.  We have Jill Smith's U.S. published study on LDN for Crohn's disease to
look at. Not only is it important to get these papers in journal's, but the quality of the journal matters. This is the first study
in a major U.S. journal and the results were good!
      Methinks MS is many diseases. There is an increasing body of evidence that shows that  degeneration(oligodendrocyte apoptosis )
, not auto-immunity is the causative event in some cases. LDN is being shown to have an effect on neuro-degeneration.
      As patients, looking for answers we are up against the leanings, nay, prejudices, of our professionals. Many patients
read this page, and I feel that for the last 2 years I've been a mouthpiece for the status quo. LDN (or something) has
worked for me, and it's worked for thousands of others! Try it!

**********

New Links 07

I wrote to some ldn lists asking for new links and got back 3 notes: I will just cut and paste these here.

********
Dear Bill,



About Low Dose Naltrexone (LDN) for the treatment of auto-immune diseases
 
                        Below I have written a little about my husband's experience and
                        have listed many helpful links regarding LDN,  including one
                        that helps you to explain to your doctor about LDN.   
 
            My husband, Paul, started on LDN back in November of 2004.  Right away he lost his fatigue. Within the first week he no longer had bladder frequency and within the month he regained his balance and fine motor skills.  He is now back to playing one to two sports a day.  He surfs, plays basket ball, softball, soccer and occasionally golf's.  He still has some numbness and tingling, but it is very manageable.
 
            Paul had also suffered from morning depression and nothing had worked until Dr Bihari told him to start taking DL-Phenylalanine (DLPA) in February of 2005.  His depression disappeared right away and has not returned.
 
            The biggest thing to realize is that everyone's body is different and reactions vary.  It would appear that over 85% of people taking LDN have a good response, with some type of symptom relief and/or lack of progression. Some people have miraculous recoveries and some only mild help. And there is small percentage of people that it does not seem to help.
 
            A few things are for certain: there are far fewer side effects (and they usually go away within the first few weeks), it is much easier to take and it is much cheaper than the standard C.R.A.B. pharmaceuticals prescribed for Multiple Sclerosis (MS).
 
            Within the lowdosenaltrexone Yahoogroups chat site, we have noticed that some people end up doing best on 3.0mg of LDN, and some do best on 4.5mg.  It is best to try and play around with the dose to see what works best for your own body.  In a recent poll on the chat site it was noted that one's weight or size has nothing to do with the dose that they do best on.
 
            A number of people have been taking a smaller dose of LDN (maybe 1.5mg) at the start and increasing it slowly to the amount that they react well to. The theory is: People will tolerate LDN better and have less side effects if they start at 1.5 and go up slowly. (important-if original prescription is 1.5 mg then one can alter their own dose as needed).
 
            A few trouble shooting items that we have noted on the chat site for those that do not react well to LDN at the beginning are as follows:  Check the type of filler you are using and make sure you are getting your LDN from a reliable compounding pharmacist (only use quick release fillers).  LDN can be compounded in a capsule with fillers, in a liquid preparation taken orally or as a transdermal cream.
 
            Make sure that you do not have Lyme's Disease as it can mimic M.S. symptoms.  Check to see if you have Candida, a yeast infection.  Many people do well on LDN once they have ridded themselves of Candida as Jacquleine McCandless, MD has found in treating people with Autism.  
 
            We strongly recommend keeping a weekly journal of symptoms and reactions so that you can record your LDN experience?
 
 
 
For more information on Low Dose Naltrexone (LDN), please see the links listed below:
 
 
The official web site that describes what LDN is all about.

 
Subscribe to the official LDN Yahoogroup to learn about taking LDN for a number of health issues.
/
 
The 'Case Health' website, based in Australia, collects and shares health success stories – search the database for LDN

 
The Proceedings of the 2nd LDN Conference held at the National Institutes of Health in the USA in 2006 are available on DVD for only $10.00 . This was a medical conference with doctors from around the world presenting their findings on the effectiveness of LDN.

 
Dr. Laurence's web site. He is a doctor in England that uses LDN for his own MS, and he has been giving it to his patients for a number of years with good success.

 
Sammie Joe’s web site and her time line


 
Mary Bradley wrote a book, Up the Creek with a Paddle, regarding her husband's experience with LDN and MS, and her uncle’s experience with LDN and Parkinson's disease.

 
Go to these sites to find an alternative way to get LDN and how to prepare it (goodshape site).  However, we always recommend going through a doctor if possible.

 
The Compounder Pharmacy site has stories from others that take LDN.

 
Contact Dr Skip Lenz for information about best fillers and methods for compounding LDN

 
The LDN Research Trust site from England is trying to get research done, they have additional information.

 
Maureen has put together documents that help explain LDN and suggests how to talk to your doctor about LDN.


 
Brenda's LDN forum and Information center

 
Good LDN Site for info:

 
Crystal's web site concerning Multiple Sclerosis and Transverse Myelitis

 
For Autism: Dr McCandless continues to run research on LDN's benefit for people on the Autistic Spectrum of Disorders.  Go to
www.starvingbrains.com and subscribe to Autism_LDN yahoogroup.
 
For Crohn’s chat site and for LDN trial info:


 
One common reason that LDN does not seem work for MS is a mis-diagnosis and someone ends up having Lyme's Disease instead of Multiple Sclerosis
www.lymebook.com
 
Here are some movie links of people on LDN
http://www.skipspharmacy.com/vid/crystelinterview.mov
http://www.skipspharmacy.com/vid/PaulNocohlasXmas.mov
http://www.skipspharmacy.com/vid/maryintforweb.mov
 
 
Let us all know how it goes,   Aletha   February 2007  aletha@redshift.com
 
Please see next page for Paul’s MS story
 
 

Paul’s MS story
 
            When nearing the end of my husband's 48th year we had decided to purchase a rental property in a rapidly growing community in Florida.  We worked for months doing research and finding a good property manager.  Then there was the hard work of finding the right property and securing a loan.  The most difficult part of our venture was doing this all from California and not being able to see the home in person.  Things however began to fall into place in a way that seemed almost orchestrated.
 
            We came to find out that a friend of ours was in the process of moving and had taken a job as a mortgage lender near the area that we were looking in and she was happy to scout at houses for us with the realtor.  Within a few weeks she found a house that met our criteria and she had the loan papers underway.  Once we felt things were going very well we booked a vacation for the family and flew to Cancun.  From the resort we checked our e-mail and the house had closed escrow one morning. The next morning the internet reported that Hurricane Charlie had hit the coast of Florida.
 
            When back home in California, my husband worried for the entire month of September while the Sunshine State was ravaged by four consecutive hurricanes.  He worked at a weather center where the days were filled with the topic of the hurricanes.  Then he would come home and check the internet and spend the evening watching CNN.  At the end of the month our new house was fine, but my husband was not.
 
            Paul went to his doctor complaining of neck pain and, within a few weeks of extensive testing and a series of different specialists, we were told he had what appeared to be Multiple Sclerosis.  The news was completely devastating to my husband as he pictured his life in a wheelchair and being unable to surf, play basketball, and play tennis.
 
            Paul’s symptoms began appearing in rapid succession.  He experienced a strong depression and lacked the feeling of well being; he found that he could not coordinate a cordless screw driver to put up our new curtains; he had bladder frequency and could not stray far from restrooms; and one day he came home in tears because he could no longer shoot and make a basket.
 
            Paul’s depression grew despite going to a psychologist, learning to meditate, going through hypnosis and trying a selection of antidepressants.  Every morning I would sit with him in bed and give him a pep talk.  I would point out all of the people that do just fine with MS and how it can be very slow in progressing for some people.
 
            Although he would try everything suggested to him to get beyond the empty spiral of extreme depression he was not getting out.   The worst of Paul’s symptoms was extreme fatigue. Everyday for two and a half months Paul would go to work for half a day and come home after lunch break.  He was too tired to stay at work and too depressed to concentrate on getting anything done while he was there.  Paul began thinking of how to end it all.
 
            After going through a series of neurologists, our family doctor got us an appointment with a young neurologist in the area.  She was very kind and caring. She took the time to explain   everything to us.  We felt like we were finally getting somewhere.  She explained the four C.R.A.B. drugs to us and told us that Paul had a little time before deciding which one would be best for him.  That evening I went on a quest to find out everything I could about these four drugs.  Most of the sites that I found were from the drug companies themselves and from other organizations that advocated using them.
 
             Over the next few days I spent countless hours trying to find out what people who were actually using these drugs had experienced.  I finally happened upon a site called Remedyfind.com which lists many ailments and their treatments.  People themselves rate the drugs they have tried and they are able to write a paragraph about their experiences. 
 
            The news was pretty bad for all of the CRAB pharmaceuticals. They required taking shots, having a lot of nasty side effects, were very costly ($800 to $1400 per month) and did not appear to help very many people. When I looked at the overall rating of these drugs I was stunned to find them at the bottom of the list with a rating of 4 to 5.5 on a scale of 10.
 
            I looked up to see what was in the number one place and it was a drug I had not heard of.  It was called LDN and it was rating at 9.1.  I quickly read that this drug was taken in a pill form, it had very minor side effects that typically disappear within the first month, and the drug only cost approximately $15/month.  The most amazing thing however were the stories of how people were getting their lives back.  An added bonus is that a majority of people were experiencing a lack of progression.  Their MRI’s were coming back with no new lesions and their symptoms were disappearing.  I spent the better part of an evening crying as I read through more than 60 stories from LDN users.
 
            I printed out all of the stories so that I could give them to our new neurologist.  I was sure this was a no-brainer and she would write Paul a prescription and we would be on our way.  But she did not seem interested in looking them over or doing further research on this miracle medicine.  I could not understand because it was FDA approved at a much higher dosage of 50mg, while you only took 3 to 4.5mg for MS.  Certainly there was no danger in trying it.
 
            While I concede that I am not a scientist, I could not understand how this many people could be wrong.  I decided we needed to take my husbands health into our own hands.  The following week I made an appointment with the doctor in New York that originally thought through the idea of administering this drug in a low dosage for people with auto-immune disorders.  Dr Bihari said that most neurologists are concerned about giving LDN a try because it up-regulates the patients autoimmune systems which they are concerned might then aid the immune system in further hurting and attacking the body.  Three out of the four CRAB drugs are immune suppressants.  But as it turns out once the immune system is up-regulated it actually goes into gear and remembers how to behave.  
 
            The day after my husband took his first dosage he went to work and did not come home until 5pm.  His feeling of well being returned and within a week his bladder frequency was gone.  Within a month Paul could use the cordless screwdriver and he was back to 2 sports a day in the next few months.  After nearly two years my husband has never come home due to fatigue and his MRI’s show no new progression.  The only symptom that Paul has is minor numbness and tingling in his hands.
 
            What I have learned from being on the Yahoo LDN chat site is that about 85% of people with various auto-immune diseases have lack of progression and/or some form of symptom relief.  Not everyone reacts as quickly as my husband and not everyone has miraculous recoveries.  But once in a while I hear of people that get out of wheel chairs, get their vision restored, gain their cognitive skills back or feel like they no longer have the dreaded Monster.  I believe that neurologists that truly care about the health and well being of their MS patients should first try LDN and move onto the CRAB drugs only if LDN is not effective for them.        
 
            Aletha   February 2007 

*****************
Dear Bill,

I noticed your website and in particular located a section on Low Dose Naltrexone, so I thought you might want
a copy of the attached booklet to read or make available on your website.

It's pretty self-explanatory so I won't go into the details here, but if you have any questions I'm happy to
answer them.

I hope you find the booklet of interest - and I'm happy for you to add the booklet to your site if you're
happy to include the following copy:

FREE BOOKLET: Five Multiple Sclerosis health success stories attributed to Low Dose Naltrexone (LDN) Treatment
were extracted from the Case Health online database and assembled for this collection. In keeping with the
altruistic intentions of story contributors Case Health offers this booklet without charge or expectation.
We've/I've been granted permission to 'share-it-forward' under the same philosophy - 'as-is', without change
or
modification - and on the understanding Case Health's administrator is not a qualified health professional.

© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 2/24
 
1) LDN- My Post LDN MS Story – Jim
 
 
 
story submitted Dec 2005
- story updated Dec 2005
- story updated - no change to report - August 2006
- story updated July 2007 (3.5yrs on LDN)
 
SPECIFICS: 
DIAGNOSED - Relapsing Remitting Multiple Sclerosis (RRMS) January 2002
MEDICATION – Beta-Seron – started February 2002, stopped November 2003
MEDICATION – Low Dose Naltrexone (LDN) – started Dec 11th 2003 on 3mg for 1 month then increased dose to
4.5mg taken as close to 11pm at night as possible. Capsule filler is Avicel
DIET - Joined weight watchers and lost 55 pounds, now have 70 lbs more to go. Also attempting to quit smoking
(talk about stress) haha.
EXERCISE -  Tai-Chi & martial arts, learning to relax, as well as more walking.
 
 
 
My Story – December 2005
 
My Story AFTER beginning Low Dose Naltrexone (LDN) – in December 2003:  Personally, I believe it
has halted the progression of my disease and it has given me back some of the abilities I thought were
gone for good. No....this is NOT a solicitation, this is not some sort of scam, this is MY Story ... MINE ...
you want to find out more, check out remedyfind.com, then go to ldninfo.org and you may, just may, have
an inkling of why I've now got hope back in my life.
 
My neurologist says it's a placebo effect, and I said, okay ... you'll write the prescription for the sugar pills
... okay??  She did - then we parted company. She didn't like the fact I'm better, and I'm no longer on the
poison's she wanted me to take.  (My opinion of the CRABS drugs, and mine only.)  
 
I don't stagger when I walk, don't rely on a cane for balance, don't use a wheelchair for the distances
anymore.  No longer do I slur my words, don't shake, spasm, tremor or any of that.  The never-ending
migraine ... gone. ... Now if I get a headache, it's usually due to sinuses, and a sinus tab or couple of
Excedrin take care of it. Am I cured???  Not by any stretch of the imagination, and sadly, most people
don't receive the almost full reversal of symptoms that I've had the joy of receiving.  Most all do say they
experience better bladder control.   
 
If you've made it this far, and maybe checked out the LDN website - go back and re-read it - then read it
again a couple more times before you jump up and down and think THIS IS IT!!!! Read ... ‘it's intended’
or I should say, ‘it's believed’ that it halts/stops the "PROGRESSION" of the disease.
 
Anything else like symptom improvement is a happy side effect and not a guarantee. Just icing on the
cake ... something to be hoped for, not expected – but a bonus. Starting to sound like a ‘bleep’ ad for the
drug ... I'll end here.  May the Lord Bless you and watch over you, and remember - this is just my version
of how ‘I’ felt, not anyone else.  Some people actually feel much worse.
 
UPDATE – December 2005 (now 2yrs on LDN): 
 
Been a while since I checked in with the discussion group, and today is my 2-year anniversary on LDN.
Started Dec11th 2003 at 3mg, was on that for a month, then upped it to 4.5mg and have been there ever
since.  Like Reg, I'm another Happy Camper on LDN who has a lot to be thankful for. I still tend to 'lurk' in
the shadows of the group, and will probably continue to do so, but thought I'd throw my 2 cents in for
what it's worth.  So, now that I'm out of my "Cave" I'll re-gale you with a short version of Thanks.... 
 
Thanks to the 'old-timers' for your encouragement a-ways back, when I was at my ropes end just looking
for something that would halt/stop the onward progression of this MonSter.  All I wanted, hoped for, was
something, anything, that would stop me from getting any worse. Received more than I was hoping for. 
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 3/24
 
As it turns out, I realised an ‘almost’ complete turnaround of symptoms. Not remission. I did try Dr. Bob
Lawrence's ‘two days off’ system but couldn't walk at the end of the two days so have learned, for me, it
'appears' to work better without having scheduled breaks and missing doses. Again, thanks to all who
helped me in the beginning. To try to name all of you would be next to impossible and if you remember
me, then you've probably helped me at one time or another. Thank you! Cured???  Not hardly, but I will
say again, my 'worst' day taking LDN is by far and away much, much better than my 'best' day on the
injections.
 
Just my personal observation as it relates to me. I still have the ups and downs, but seem to bounce
back pretty well. I have good days, and 'better' days.  Any day I can get up, out of bed, make it to the
'throne'-room (blush) without falling down, having an 'accident' along the way, and make it there by
myself, without a cane, or the wheelchair, is a good day. The better days are when I have the energy to
last all day without falling asleep in the middle of the day, actually get projects complete around here. 
 
Being able to (half-way) think once again, having a "Memory" once again, balance, bladder control, no
more tremors/shakes, a general 'lessening' of most symptoms to the point most are easily tolerated or
ignored altogether, is absolutely wonderful - more than I ever expected. It's nice to stand for more than a
couple of minutes without having to sit down because the legs are starting to wobble, tingle and go numb
- and if they go numb, I fall.
 
I have pushed myself too hard on occasion, and have paid for it, but not like in the past. No more knives
in the backs of the thighs, arms, back, or elsewhere. No more electric type shock sensation, no more
Intense burning over half the body – very mild now. If only ... if only I had been guided to the LDN
website earlier, had been given LDN information and the option to try LDN medication in the beginning,
probably would not have (maybe?/maybe not?) ANY lingering symptoms as I have now. 
 
I'll happily settle for what I've regained as opposed to what ‘could have been’ because I was lucky. I
found LDN and had the courage to try LDN before I got even worse. What if I hadn’t? I know many have
given coffee away, but I still drink maybe 4-6 cups of coffee in the morning. Two years, no ... I repeat …
NO relapses, no flu, no colds, no pneumonia, no more migraines, no more ‘Sorry honey, I"VE got a
headache’ <grin> and I really believe, NO progression. To ALL the newbies joining the group, and people
I haven't had the chance to meet yet in the group … Welcome, and hang in there.  Listen to the 'old-
timers' as they've been around a little while, and just want to help you if they possibly can, plus from what
I've been reading, some of the newbies are pretty sharp themselves and have done some homework.
 
There is a wealth of information to be harvested here, and information to share that is available to all of
us. Sharing is important – when you’ve been helped, it’s your turn to help others. All we have to do is
'post' a question and someone who has information, answers ... hmmm duhh ... if I can do this, anyone
can.  <grin> Lot of sharp people there, and they want to help.
 
To anyone out there still sitting on the fence... read all you can about LDN - the pros, the cons. One thing
I did that you might try ... ask if you can e-mail a couple of people off the message board (private), get
their story, ask if you can call them up, or ask if they can call you. Talk to them "in person" so you get up
front and personal.  For me, it changed the whole way I thought about it.  Figured it couldn't hurt, so why
not, take a leap of faith, and maybe, just maybe, it might help.  For me, it did.  Hopefully for you, it will
also.
 
Hope this makes sense to 'someone' out there, hmmm, guess I'm sicker than I thought, as it's starting to
make sense to me. Haha Time to go before this becomes another book. Off to my "Cave!" Have a Great
Day!
 
 UPDATE: JULY 2007: 
 
Just checking in to say life is pretty decent once again. :-) June 11th was 3 1/2 years on LDN. Life
changed literally overnight.  From the pit of despair, having to use a wheelchair, cane, or the walls to
remain upright, to being able to walk again without needing any of the aforementioned as aides.
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
I count myself among the blessed that have received an'almost' complete turn-around of symptoms. 
Three real challenges remain - extreme fatigue, weakness, and heat intolerance. I still have my
'moments' when things aren't quite right.  Some of the symptoms raise their ugly heads and make a brief
re-appearance to let me know they have not gone away completely...just laying in wait...no biggee...been
here before and now know they are only temporary.  Thing is NOT to freak out...just to RIDE it out and all
quiets down again.
 
I find that if I stay up and moving, keeping the mind active and the hands busy, I can ward off the fatigue
most of the time, and some exercise and lifting weights just to keep 'toned up' help with the strength.  So
far, the only thing that really combats the heat is remaining indoors under the air-conditioning unit - sigh.
 
It does help to wear a neckerchief with the 'crystals?' that absorb water and puff up, after it's been in the
refrigerator to chill. Using a bottle 'mister' you pump up and spray, plus a small hand held portable
fan. They all help ‘some’ but as with anything, they do have their limits. Keeping stress out of my life
(much as possible) has been a help. I remain optimistic that I 'may' improve some more...just have to
keep working at the lifestyle changes.
 
We (wife and I) are planning on attending the next LDN conference in Nashville, TN, and hope to meet
some of the people we've been in contact with via the LDN discussion group and phone calls. I don't post
much anymore as there are now a lot of people to help the newbies but I still help behind the scenes. All
we can do is tell our story and let those who are thinking about trying LDN get all the information they
can, and make up their own minds about it.
 
I still try to talk to at least one person a day about LDN. Good news is; after 3 1/2 years there are now 4
doctors in town that will prescribe LDN, another two are located 10 miles south and an hour north of us.
20 people I know personally are taking it here and they’ve told others who are now taking LDN. This has
taken on a life of it's own!!!
 
We are anxiously awaiting the results of the UCLA LDN clinical trials, and as soon as we hear anything
I'm taking plenty of copies of the information to my doctor so he can pass it out to other doctors he's
knows.
 
Jim (RRMS)
 
 
 
Jim, December 2005

*****

© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 5/24
 
2) LDN-Until there’s a cure there’s LDN-Carol
 
 
story submitted July 2006
- story updated July 2007 (almost 5yrs on LDN)
 
SPECIFICS:
LDN - 4.5mg capsule daily - Sept 2002 to July 2007
TOPAMAX: 100 mg for seizures prescribed by my first Neuro in 1999 but ceased May 2006. I started on Topamax
after I had 3 seizures, 2 of which were in a Walmart Store in Florida in 2003.  My Neuro felt it was due to my MS
and the store lighting. I stopped taking Topamax in May 2006 because I felt so much better on LDN and hadn't
had a seizure in years. I'm prepared to go back on Topamax, if necessary, but am hoping that won't be the case.
NUTRITION: Always been careful - fresh vegetables, fruits, chicken, fresh fish, whole grains - rarely eat red meat,
and limit my dairy, white flour, refined sugar intake - occasional sweets.
SUPPLEMENTS: one multi-vitamin, one Fish Oil tablet daily.
 
 
 
My Story – July 2006
 
My name is Carol. I am 49 yrs. of age, and I was diagnosed with Relapsing Remitting Multiple Sclerosis
(RRMS) in June of 1999. When I received the results of my final test (spinal tap) and was told of the
ABC's (an acronym for the first initials of MS drugs, also known as CRABS) I had to chose from (none of
which sounded good to me) I told my Neurologist from the very beginning … "I Will find something
better".
 
I was immediately prescribed Avonex and remained on it for 2 yrs, along with a handful of pills each day
to help with fatigue, loss of sleep, and spasms.  The stress alone of having to inject myself with an
intramuscular shot once a week was a horror.  Dealing with the side effects was just as bad.  But I did
have hopes the Avonex would help me. 
 
I found myself going into extremely bad relapses (every 3-4 months) which kept me from walking for
sometimes up to 6 weeks at a time.  Along with each relapse came the Steroid IV treatments, followed by
13 days of weening off with Prednisone pills.  This DID NOT make me happy, nor did it make me any
better.
 
My Neurologist, finally, decided to try me on Copaxone. Injecting myself every day led to more stress and
I found myself having extremely bad side effects. After two months of extreme side effects, I realized I
was allergic to it and again changed my therapy.
 
I moved on to Beta-Seron - every other day injections - still hoping I would find some relief and start
slowing the progression but around this time I started using a cane to get around and found my health
and life was changing dramatically - for the worse - as time passed.  
 
The relapses didn't stop although they weren't hitting me quite as often, but my symptoms were definitely
worsening and my health deteriorating. I was "In search of" something better, something that was
actually going to HELP or STOP my MS before the rest of my body was destroyed.
 
That’s when I heard about Dr. Bihari and Low Dose Naltrexone (LDN) from a friend who also has MS.  
 
I immediately made a call to Dr. Bihari's office and set my appointment with him for a month later.  
During that time I stopped all my medications, injections included, to rid my body of all other chemicals. I
wanted to start the LDN with nothing else in my system so I would know EXACTLY what, if anything, it
was doing for me. 
 
I did however, let my Neurologist know what my intentions were and showed him all the printed
information I had on LDN.  I told him I respected his opinions but that it was MY body, and as I was the
one with MS I should be able to make MY own decision on how to treat it. 
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 6/24
 
He was not impressed because LDN is not yet FDA approved for MS, but I stood my ground.
 
On September 9th, 2002 I met with Dr. Bihari in NY. I lived in Florida at the time but I would have
travelled from anywhere. Dr Bihari prescribed LDN and I started my first dose of 4.5 mg Naltrexone
capsules the same night.  
 
On the second day after starting LDN I woke up without spasms. I was convinced it was too soon to be
the LDN and was thinking it was "just a coincidence".  
 
By the third day I was feeling strong enough to walk along the beach - something I had NOT been able to
do in the three years since my MS diagnosis, and certainly not with any of the previous drugs I’d been
prescribed.  I walked a good 3 blocks in the sand ... I couldn’t believe it!!  I was elated and by now
convinced LDN was already having an effect.  
 
Nothing happened quickly, but as time progressed I noticed small incremental improvements – gradually
increasing body strength, more clarity, less spasms, less numbness and tingling, fewer headaches - and
my sleep pattern was getting better.
 
I have been on the LDN for almost 4 yrs now, and will NEVER stop taking it. 
 
My life has Quality again now - something I feared I’d lost forever.  I won't sit here and say I don't have
some down days - I still have MS after all!  But, my days are mine again. They belong to me now, not the
MS - and I'm feeling stronger than I have in years.  I no longer use my cane unless it’s for extremely long
distances and this pleases me immensely.
 
I haven’t had one relapse since starting LDN. LDN has STOPPED my MS progression - not just
SLOWED it down like the other therapies I’ve used. I don’t have to worry about side effects either –
another reason I wasn’t worried about trying LDN.
 
I'm a true believer in LDN and here’s why:  After starting on LDN I had an MRI (in 2003). It showed that
my (4) "lesions are healing themselves".  Those words came from my Neuro when he showed me the
films and I couldn't see the lesions any longer.  Yes, they were Prominent, and now only one small spot
is visible. 
 
I asked my Neurologist if he was still questioning the benefits of LDN after seeing the wonderful
improvement:  His cautious reply was … "Don't stop doing what you’re doing" …  yet he still will not write
a prescription for LDN. My last words to him were, "Shame on you for not sharing this with the rest of
your patients".
 
After moving back to NY I made an appointment with a new Neuro - and that's a whole other story!!  Let's
just say ‘she was shocked’ by my MRI results.  In the past 4 years (since starting LDN) there has been
no progression.
 
There she was - telling me my lesions HAD to be multiplying - and that IF my results showed more
lesions, she wanted me to consider going back on the injections – and she added that if I didn't go back
she wouldn't take me on as a patient! 
 
Needless to say I left her office with a copy of my MRI report and told her I'm doing what is BEST for MY
body and I now had to decide whether or not I wanted HER as my Neuro!
 
I was diagnosed with Lobular Breast Cancer in February 2006.  It was my first Mammogram (wrong on
my part to have waited so long). It turned out to be Pre-Cancerous but I still had to have the tumor
removed.
 
In my heart I honestly believe this could have resulted in a very different outcome - a horror story.  I
believe taking the LDN has kept it at bay, kept it from growing.  I turned down the hormone therapies
(which I found out can cause Cervical or Uterine Cancer) and am sticking to my LDN.  
 
I hope all doctors will take notice of this wonderful treatment option - that the major media will finally
acknowledge LDN - that LDN clinical trials for MS and other diseases will happen and will prove LDN to
be an effective and economical treatment - and that the FDA will approve it - so everyone suffering from
this and other Auto Immune System Diseases will be able to benefit from it.
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
 
UPDATE: JULY 2007
 
I'm happy to say.... LDN has NOT stopped working for me!  I'm still quite content with how I've been
doing since this time last year.  June was my 8th anniversary of being diagnosed and this September will
be 5 yrs on LDN.  I truly haven't experienced too many changes, other than slowing down a bit more.  (I
did just turn 50!!)  My legs get a little more worn out than they did a year ago, and I've had a few minor
flare-ups - but no relapses, and nothing major like before LDN.  I have an appointment with a new Neuro
this month. I'm sure that will be interesting!  I plan on taking all my info on LDN with me, along with my
MRI films for the past 8 yrs (those of which have no changes in them) and see how that goes. I love
knowing that I can help others in some way when it comes to my experiences with LDN.
 
I AM a BELIEVER
"Until There's A Cure ... There's LDN"
 
 
 
 
 
 
Carol, July 2006

*****************

© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 8/24
 
3) LDN-out of wheelchair under a week-Scott
 
 
story submitted May 2005
- story updated Jan 2006
- story updated May 2006
- story updated July 2007 (3yrs on LDN)
 
SPECIFICS:
DIAGNOSED - Relapsing Remitting Multiple Sclerosis (RRMS) October 2001
MEDICATION – Avonex then Rebif - started January 2002, stopped July 2004
MEDICATION - Low Dose Naltrexone (LDN) – started 23 July 2004
DOSE & TYPE – 
a) Dose – I started on 3mg for 1 month, then 4.5 and have been taking this since
b) Time - I take the Naltrexone at 11pm each day
c) The Naltrexone capsules contain pure Naltrexone powder with Avicil (sp) as a filler. 
EXERCISE - aqua therapy at the YMCA three times a week plus exercising at home three days a week
DIET - Swank diet since 1 January 2004
SUPPLEMENTS – Vitamins from 1 January 2004 and since - B-12 shots, Multi-Vitamin, CoQ-10, Beta Carotene,
Folic Acid, Ginkgo Biloba, Vitamin D, Fish Oil, Melatonin. From APRIL 2006 - 400 mg Magnesium.
 
 
 
My Quest for LDN - May 2005
 
Hi, I’m a 31-year-old male diagnosed in October 2001 with Relapsing Remitting MS. I had slurred speech
that went away before the diagnosis. I felt all right in 2002 and then in mid 2003 I began to have
problems. 
 
In January of 2004 I was laid off from my job because of poor balance, bladder problems, deteriorating
vision, and poor handwriting. In March of 2004 I began to use a wheelchair due to leg weakness. 
 
I began to read everything I could on what helped others with MS. I found Remedyfind.com. I read about
Low Dose Naltrexone (LDN). What was this? The more I read the more I liked the idea. 
 
I asked my doctor about it and without batting an eyelash she said “NO! It’s horrible stuff.” Why was I told
‘no’ so quickly without a discussion? Many people were on this medication and it was working well for
them. I thought I deserved more than a simple “no”. 
 
I found another doctor who would prescribe it and began LDN on 23 July 2004. Within two weeks my
muscle spasms went. My bladder urgency was the same but I could deal with that, as my other
symptoms were getting better. Within a few days I was out of my wheelchair (I was in it for five months)
although I was using the walls to aid my walking. 
 
Ten months later, I mow my own grass. I still have balance problems and muscle spasms but they are
not as bad as they were. My “brain fog” has gone completely. The problems I have with my vision have
lessened and I plan on seeing an ophthalmologist. My eyes are stopping me from driving. 
 
I use a pedometer to track how much walking I do each day. I tend to walk about 2 to 2.5 miles a day, I
also exercise 3 times a week to help keep up my strength. LDN has given me my life back.
 
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. 
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 9/24
 
I was on Avonex and Rebif (two of the CRAB drugs) for over two 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
regimen 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 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:
 
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
wasn’t 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.
 
For the past 2.5 years (that’s right I said years) I had not been able to drive.  However, my eyes have
improved gradually and I got the BMV’s approval - so I am driving again!  I am soooo happy because I’d
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 – it was too far to walk safely and manage grocery bags.  I
used to sit alone in my house a lot.
 
I tell ya ... now that I have a car and drive myself places (and even though I’m restricted to daytime
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.
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
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 don’t want to raise any false hopes.
 
UPDATE - JULY 2007 – 3 years on LDN
 
Now a year later it is time for my 3-year update.  There have not been many changes in the last year. I
did, however, miss two weeks of LDN (due to 2 surgeries).  Also, because of the surgeries I had to miss
approximately 2 months of aqua therapy.  Due to these 2 factors my health declined slightly. I now have
poor balance and use a cane more than I did before. 
 
Aside from that I don't have anything negative to say. I can say the lack of exacerbation is still a positive.
I'm still driving (though not a lot and always nervously) and still living alone keeping my independence.
I’ve tried several times to get my neurologist to write a prescription for LDN, but his only compromise was
that he’d write a prescription for LDN if and only if I would take Copaxone as well.  Needless to say I said
‘no thanks’.  
 
I did show him the LDN conference DVD. I also asked how he could explain me getting better on LDN. 
His response was; "That's just MS".  I'm going to be looking for a new doctor (doctor number 5) very
soon. I believe all of my improvements are directly a result of using LDN religiously. I will continue to use
it until someone finds a cure for MS. As another has said; "until there is a cure there is LDN."  Period.
 
Scott, Ohio, USA
 
 
 
 
 
Scott, May 2005

******************

© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 11/24
 
4) I have MS but I'm walking and driving my car again-Bill
 
 
story submitted March 2006
- story updated - no change to report - August 2006
- story updated – July 2007 (2yrs on LDN)
 
SPECIFICS:
DIAGNOSED - Relapsing Remitting Multiple Sclerosis (RRMS) 1998
DIAGNOSED – Secondary Progressive Multiple Sclerosis (SPMS) 2002
MEDICATION – Avonex, Copaxone, and Rebif (ABCR drugs), chemotherapy (Cytoxan), plasma exchange, as well
as many, many sessions of IV steroids (Solumedrol).
MEDICATION - Low Dose Naltrexone (LDN) – started July 2005 with 1.5 mg of Naltrexone taken in one dose per
day for the first week. I then increased to one 3.0 mg dose per day. I stopped taking the Rebif at the same time.  
DOSE & TYPE – 
a) Dose – I started on 1.5mg for 1 week, then 3mg and have been taking this since. I stopped taking the Rebif at
the same time.  
b) Time - I take the Naltrexone between 10pm and 2am each day
c) The Naltrexone capsules contain pure Naltrexone powder with Avicil (sp) as a filler. 
EXERCISE - walking, lifting light weights, and abdominal exercises
DIET – no particular diet
SUPPLEMENTS – no particular supplements
 
 
 
My Story – March 2006
 
I am 56 years old. I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) in 1998, and
upgraded to Secondary Progressive (SPMS) in 2002. My chief symptoms are (were) extreme mixed
sleep apnoea, chronic obstructive pulmonary disease (COPD), inability to walk, total deafness in my left
ear, and inability to concentrate for any period of time. 
 
I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan,
plasma exchange, as well as many, many sessions of IV steroids (Solumedrol). 
 
As of June, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of
once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately
result in my demise.  
 
I had also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and
agreed that, while continuing on Rebif, I should begin taking a week of IV steroids every three months,
regardless of my condition.
 
I did not feel that the steroids were offering enough positive results any longer, and I did not want to take
any more. I asked if they would mind my getting an alternate opinion from another neurologist. They
agreed.  
 
My new neuro re-ran all of the standard MS tests, including magnetic resonance images (MRIs). After
studying the results, she suggested I stay on the Rebif and see what the next two months showed with
regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she
would prescribe a drug therapy I'd read of - Naltrexone - in low doses (LDN). 
 
I had read a great deal about LDN and talked to a number of MS sufferers who had improved with the
use of LDN. She said she had never prescribed it but had also read a lot about it. She agreed to
prescribe it.
  
I began around the first of July 2005 with 1.5 mg of Naltrexone taken in one dose per day for the first
week. I then increased to one 3.0 mg dose per day. I stopped taking the Rebif at the same time.  
 
While I did not notice any symptom improvement for the first three months, I also had NO flares either.
But, after around three months I began to notice small improvements - my breathing was improving - I 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
could take time off from the oxygen for extended periods of time - the strength in my legs and arms was
improving - I began to be able to take short walks with a walker - then was able to take longer walks -
then upgraded from my wheelchair to a cane - then actually walked to the bathroom without assistance! 
My sleep began to improve as well. 
 
My improvement continued incrementally. When I went for my six-month check-up with my neuro, I did
not even take my cane, and I blew away my neuro by ace-ing all the tests. 
 
I couldn't drive a car for four years. I am now driving again and I'm walking without any aid or assistance.
My weight has dropped to 232 pounds. I hope to get back to my target weight of 195 pounds by year's
end.  
 
I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to
prescribe LDN for me. 
 
The only real dietary change I have made is to make water my primary liquid of choice. 
 
I recently had surgery for an unrelated problem. I was half expecting to get an MS flare up but am very
pleased to say I didn't and recovery is on schedule. After my check-up next week, I'm planning to begin
an exercise schedule involving walking, lifting light weights, and abdominal exercises, and I might even
get started on some long overdue yard work! 
 
I wish to acknowledge and thank Dr Bernard Bihari for his groundbreaking work. Clearly I was on a
downhill slide before I learned of his Low Dose Naltrexone (LDN) drug therapy.
 
I realize that money and profits are the motivation for initiating studies to have LDN approved for
treatment of MS, as well as ALS, Alzheimer's, Parkinson's, HIV, AIDS, Cancer, etc. With that in mind,
and knowing that the standard treatment for MS, the ABCR drugs, all cost insurance companies and/or
patients in excess of $1000.00 per month, I do not understand why insurance companies are not
initiating these studies themselves. 
 
I also do not understand why, if the "Mission Statement" of the National MS Society is to "find a cure for
MS," THEY are not funding these studies.
 
UPDATE: JULY 2007: 
 
I continue to do very well on LDN. I cannot know how long my good fortunes in health will continue, so I
am trying to make the most of it while I can. I am doing landscape consultation for our city, finishing a
backyard landscape project of my own that I began last summer, and I'm doing some landscape design
work for a local contractor.
 
I still talk to people from all over the country about LDN and do volunteer work here, too. By the way, last
summer, while working on my backyard, my ladder tipped over, and I badly dislocated my left ring finger.
It was in a cast for a couple of months. I built the fence, the pergola, and planted all the shrubs! Though it
has taken me much longer than it once would have, I never thought I would be able to undertake such
again. I'm planning on attending the conference in Tennessee this October (2007).
 
Bill, Alabama, USA
 
 
Bill, March 2006

************

© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 13/24
 
5) LDN-improvement was gradual and subtle, Julia
 
 
story submitted November 2005
- story updated August 2006
– story updated July 2007 (2 yrs on LDN)
 
MEDICATION - LDN - 2.5ml liquid since August 2005
EXERCISE – no particular regimen
DIET – no particular diet
SUPPLEMENTS – no particular supplements
 
 
 
My Story – November 2005
 
I used to have a great sense of humour, always had my finger in many pies and generally lived life and
was rarely still for 10 minutes. Then I got multiple sclerosis. I didn’t want to go out, meet people, or do
anything. If problems arose, I would hide from them and rather let someone else sort it............not like me
at all. I had to have someone with me everywhere I went. I was afraid of falling, getting lost or confused
and several times forgot entirely what I went out for in the beginning. It got so bad I didn’t go out for
nearly a year.
 
As my Mum has Relapsing Remitting MS, my diagnosis was expected, so I had a chance to read up on
the offered disease modifying drugs (dmd's); Interferon alpha and beta, Copaxone, Avonex, and Rebif;
and frankly none appealed to me because of the side effects. Whilst doing some digging, I came across
something in the Lancet medical journal which says the dmd's on offer aren't working as expected, etc.
 
I discussed this with my neurologist when he gave me my diagnosis in April 05 and said I qualified for
Interferon. Although he was surprised I knew about the article in the Lancet, he did discuss it honestly
and said taking the Interferon was catch 22 as yes, they knew the dmd's on offer weren’t working as was
hoped in stopping relapses and further progression of MS. He admitted the success rates weren’t as
expected when they were first introduced as an option to treat MS.
 
I said there was no way I was going on Interferon and would look for something myself. I wanted to feel
better, not worse. He agreed and I was given 3 months to go away and look for an alternative before
going back to see him again.
 
My search led me to a treatment involving ‘low doses of Naltrexone’ (LDN). It’s a tablet taken at bedtime
which works with your own body’s natural endorphins. As at 1 November ’05, I’ve been taking LDN for
three months. 
 
I’ve never felt so well. In fact I feel like the old me! I can’t begin to describe the difference after nearly 4
years of feeling unwell and a list of over 86 symptoms. Initially, the improvement was gradual and subtle
- you were aware something was better but couldn’t quite say what or why. Then you think back three
months and remember how you were. That’s when you realise how much of a difference LDN has made.
 
Some GP's will prescribe LDN on the NHS in the UK. As for me, my GP and Neuro said a flat ‘no’, so I
just looked ‘em in the eye and said I would buy it myself and take it anyway.  My neurologist said it was
my body and whilst he couldn’t agree or disagree with my decision, it was my body and I had to do what I
thought was best.
 
Thank God I ignored the drugs they were trying to get me to take, made my own decision, and went on
LDN!! Once I’d made my mind up, I had the tablets within 4 days and noticed an improvement from day
one. The only side effects I experienced were a slight worsening of existing symptoms i.e. more leg
spasms and restless legs at night, a couple of vivid dreams and constipation for the first week.
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 14/24
 
My symptoms got worse for about 3 weeks but I was well aware that might happen - I stuck with it - then
suddenly the worsening eased off and my symptoms got better. After feeling rough, achy and stiff every
morning (almost like I was coming down with the flu), I noticed a change at weeks 3-4. I suddenly felt
really good in the afternoon and have stayed pretty much the same since.
 
I saw the neurologist a month after starting LDN and he asked me if I was the same woman. He was
sufficiently impressed to say he would prescribe it on the NHS in future and send my GP a letter telling
him he can see its benefits, so the GP should be able to prescribe it. My friends and family have seen the
difference too.
 
I have no horrible mood swings - I am alert, not confused - better humour - better memory - better
concentration - better sleep - far less fatigue - from 5 trips to the loo down to none or one - legs are better
and they don’t ache or twitch so much - shakes in the morning have gone - better appetite - taste has
returned. I feel better all round, ready to face the day and not hide. Yes, I still get blips when I’ve
overdone it but I guess I hate wasting all this new found energy - so I only have myself to blame and
frankly, I feel its a small price to pay for something that has given me so much back. 
 
UPDATE: August 2006: 
 
I’ve been taking LDN for one year now. My only update is that I am now on the liquid LDN from Glasgow
(month 2) at 2.5ml and have no reason to up that dose, as I'm doing very well on it (I was previously on
3.5mg capsules from Martindales). I changed to liquid because Martindales was taking too long to deliver
and was more expensive for the NHS.  £93 per 60 tablets compared with around £45 for 3 months from
Dicksons in Glasgow. 
 
The last couple of batches of tablets didn't seem to have the same effect but the jury is out on whether it
was something to do with the filler. I will probably never know for sure. I find the liquid easier and the
2.5ml suits me well. I vary between 2.5ml - 3ml.  It also gets delivered to my door, so no trips back and
forth to the chemists, I can just get a repeat over the phone now and have it delivered to my home. 
 
After suffering a relapse from March to early June, I saw the neuro in June 06. The relapse was put down
to overdoing things after splitting with a partner, moving house and money worries. The neuro will see
me in 6 months then if all is the same (as I was back to the usual me again) I will go onto yearly
appointments. I felt at times that the LDN was trying to pull my system back in line. Some days I felt okay
and the next I was awful but gradually I've felt well again and had no problems since. I didn't need to take
steroids.
 
I now have a part-time job, 16 hours per week and am managing that okay. The only downside I can see
is that LDN doesn't help with persistent neuropathic pains but overall, I'm very pleased and will continue
taking LDN, for the rest of my life if necessary.
 
If LDN's claim to fame is to stop progression and relapses, then the side benefits are indeed an extra
bonus. I would urge anyone to try this drug and give their honest opinion, as honesty is what it’s all
about. Information on LDN spreads by word of mouth and I would recommend it to anyone.
 
UPDATE: JULY 2007: 
 
My LDN carries on being a success. I changed GP's and am at present waiting for the paperwork to
catch up from the old surgery, which has the letter from my Neuro saying he is happy for my GP to
prescribe it on the NHS. As my new GP hasn't ever prescribed LDN, she feels this is neccessary.
Unfortunately for me, my timing was not on the ball and I found myself without LDN for 2 and a half
weeks.
 
The brain fog, fatigue and bowel problems came back, along with a loss of appetite and general off
colour feeling. I managed to get an emergency bottle from Dicksons and within 2 days of restarting it, I
was back to how I was before. LDN is not a cure all. It helps me in certain areas, mainly bladder (don't
have to go every 5 minutes), bowel (keeps me regular and stops diarrhoea), and brain fog (I can think
clearly and complete tasks and remember things). I feel up to doing many things with the added energy I
believe LDN provides - things I just wouldn't attempt otherwise, such as trips to town and walking the
dog.
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
This year (2007) has been very stressful from the start. I still believe LDN plays a major part in keeping
me on an even keel. The two weeks without it, certainly showed me what things would be like if I wasnt
taking it. I still have "blips" but remembering what I was like without the LDN certainly makes me wonder
what those "blips" would have been like if I'd never started LDN. I would say I'm very happy to be on LDN
since Sept 2005 and if I had to pay for it instead of getting it on the NHS, then I would still take LDN
without hesitation.
 
Julia (UK)
 
 
 
 
 
 
 
 
 
Julia, November 2005

******************


© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 16/24
 
Other recently submitted or updated MS/LDN stories you
may wish to read …
 
 
LDN-PRMS but no exacerbations-Kathy P – submitted Sept 2006, last updated July 2007
– 3.5 yrs on LDN
 
     ‘ … I started taking Beta-Seron in 2000 … I took Beta-Seron for 3 years and felt sick every
day … I went downhill very quickly … I learned of LDN on the internet … I took the information
to my doctor … He had no hesitation prescribing it for me in Dec 2003 … He said it wouldn’t
hurt me … I take 4.5mg … I have not had any new symptoms that were severe or have stayed
… I still have MS but my memory has improved … can now cook … my Multiple Sclerosis went
from a Secondary Progressive MS (SPMS) profile to a Progressive Relapsing MS (PRMS)
profile … I still take LDN. … ‘
 
LDN-Paul’s MS and LDN story began in 2004 – submitted May 2007
 
   ‘ … The news was completely devastating to my husband (Paul) as he pictured his life in a
wheelchair … being unable to surf, play basketball … play tennis …The day after my husband
took his first dose he went to work and did not come home until after 5pm … His feeling of well-
being returned and within a week his bladder frequency was gone …Within a month … back to
2 sports a day … Not everyone reacts as quickly as my husband and not everyone has
miraculous recoveries … but once in a while I hear of people that get out of wheelchairs, get
their vision restored, gain their cognitive skills back or feel like they no longer have the dreaded
MonSter … I believe neurologists that truly care about the health and well-being of their MS
patients should first try LDN and move onto the CRAB (Copaxone, Rebif, Avonex, Beta-Seron)
drugs only if LDN is not effective for them. … ‘
 
See casehealth.com.au for more ...
 
LDN is being used for a range of diseases, such as HIV
 
 
LDN-HIV viral load down, T-cells up-Matt – submitted Dec 2005, last updated May 2007
 
     ‘ … I was diagnosed HIV positive … August 2002 … I was enrolled in a clinical trial …
September 2002 … a cocktail of 5 medicines for one year … HAART (highly active anti-
retroviral therapy) taken every 12 hrs … made me feel consistently unwell … was able to
control the virus for about a year, but then the viral load started to climb … Dec 2004 … learned
of LDN … began taking 4.5mg between 9 & 10pm each night … 2 months … viral load (VL)
went down to below 5000, and my T-cells (CD4) increased by 50% … 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 … was start taking
LDN twelve months before … so I am justified in believing it is the LDN that made the
difference … March 2006 -CD4=444, VL=4260 …June 2006 – CD4=434, VL-5810 … Oct 2006
– CD4=640, VL=5810 …  Started taking olive leaf extract, then later added selenium … April
2007 … CD4 still good at 544, viral load 35,000 – not good but since I had a slight cold the Dr
thinks that may have elevated it.
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 17/24
 
 
DRUG STOPS MULTIPLE SCLEROSIS
 
BUT SUFFERERS CAN’T GET IT
 
by Cris Kerr, Administrator & Community Health Researcher, 
‘Case Health-Health Success Stories’ website, October 2005 (revised July 2007)
 
My name is Cris Kerr and I've been administering the 'Case Health – Health Success Stories' website for
the past six years. The site collects and shares success stories (cure or improved quality of life)
attributed to any intervention.  Though based in Brisbane, Australia, the site holds stories from all over
the world and the service is provided as a community service, free of any charge.
 
A growing body of compelling anecdotal evidence
 
Through my website I became aware of a drug that has stopped the progression of Multiple Sclerosis
and enhanced the quality of life of many Multiple Sclerosis (MS) sufferers. The drug is Naltrexone (also
known as ReVia) and my ‘Health Success Stories’ database contains a growing body of compelling
anecdotal evidence that it works, and; it works well - BUT, sufferers can’t get it.
 
The Naltrexone story is a powerful story that must be told and shared
 
Dr Bernard Bihari (USA), a long advocate and prescriber of Naltrexone has alleviated the symptoms
and/or progression of MS sufferers by prescribing Low Doses of Naltrexone (LDN). His groundbreaking
work, commenced in the mid 1980s, has resulted in a small but growing number of physicians
prescribing Naltrexone to minimize both progression and symptoms of MS for their patients.
 
Multiple Sclerosis (MS) is not the only disease Dr Bihari has treated successfully with low doses of
Naltrexone. LDN is cited as beneficial across a broad range of chronic diseases such as HIV/AIDS, lupus
(SLE), Parkinson’s, Crohn’s disease, Breast and other cancers, arthritis, and even Fibromyalgia. If you’re
wondering how all these diseases are linked look no further than an errant immune system.
 
Due to the wonder that is the Internet, word is spreading. A maiden conference dedicated to LDN was
held in New York in 2005, followed by a second in 2006. This year (2007), the third (now annual) LDN
Conference will be held in October.
 
MS sufferers whose symptoms or progression have been alleviated by treatment with LDN have formed
support groups dedicated to spreading the word. They're striving to help fellow MS sufferers via
information-sharing, emotional support, and fund-raising for clinical trials; the first of which commenced
this year (2007) at the University of California, San Francisco. Funding was raised by a dedicated
support group linked to LDNers.org.
 
Why are Clinical Trials important?
 
Naltrexone has not achieved mainstream acceptance as a treatment option for MS due to absence of
clinical trial data. Whilst a growing number of doctors will prescribe LDN for MS, most are too cautious to
prescribe a treatment they perceive as unproven clinically.
 
At this time Naltrexone is only ‘officially’ approved as a treatment for alcohol or drug dependence, at
doses much higher (around 50mg) than the very low doses (up to 4.5mg) prescribed for the management
of MS or other diseases.
 
Clinical trials answer the ‘who, what, why, where, how, and when’ questions that must be answered to
establish patient profile, efficacy, optimum dose, safety, etc.
 
Clinical trials establish evidence of successful, safe outcomes or unsuccessful, unsafe outcomes.
Doctors therefore, quite rightly, base treatment decisions on clinical trials because this is the safest
system to follow, and patients wouldn’t want it any other way.
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 18/24
 
 
But, where does that leave the promise of Naltrexone?
 
Health success stories written by patients and attributed to LDN are growing exponentially.
 
A large body of stories from MS sufferers who’ve slowed or halted progression of their disease after
taking LDN are building a compelling case, but these stories represent only one facet of evidence. Health
success stories alone don’t provide sufficient evidence for most doctors to prescribe LDN.
 
A large body of health success stories does, however; provide sufficient evidence to advocate for clinical
trials.
 
Clinical trials cost money and are typically initiated or sponsored by those who expect to recoup the cost
outlaid for the trial by commercializing its successful results. That’s business and that’s how it should be.
If an organisation is prepared to fund the very high cost of research, development, and clinical trials then
they’re entitled to view the costs as an investment that will turn a profit.
 
Naltrexone has long passed its patent protection period. Drugs outside of patent protection are classed
as ‘generic’ drugs because they no longer have a sponsor. A clinical trial therefore, does not present an
attractive commercial proposition for those sponsoring organisations that have traditionally initiated
clinical trials - because they wouldn’t gain exclusive rights (and subsequent profits) from a successful
outcome.
 
What’s wrong with this ‘system’?
 
The driving force behind Research, Development, and Clinical Trials is commercial. There’s no big profit
to be made from a clinical trial of a ‘generic’ drug such as Naltrexone regardless of the promise it holds,
so nothing happens.
 
How did we discover Naltrexone holds such promise?
 
Via his practice Dr Bernard Bihari has been trialling Naltrexone since the mid 80s, resulting in a growing
body of health success stories linked to low doses of Naltrexone.
 
Testimonials appear on core LDN supporter sites: In the USA, Dr David Gluck, a childhood friend of Dr
Bihari and LDN advocate, manages the website lowdosenaltrexone.org and it's sub-site ldninfo.org with
the help of his son. An LDN for MS Research Fund, sponsored by the Accelerated Cure Project for MS
and initiated by four individuals with a keen interest in LDN is publicised on this site. You'll also find the
Foundation for Integrative Research; now known as the Foundation For Immunologic Research (FFIR);
founded in 1989 by Bernard Bihari, MD and two colleagues to raise trial funds for the broader range of
LDN's promising applications.
 
In the UK, LDN Research Trust was founded by Linda Elsegood, herself an MS sufferer who takes LDN.
Linda’s monthly newsletter contains LDN testimonials. The patients who’ve been helped by LDN are
doing what they can to raise awareness and funds for clinical trials … the hard way.
 
You can’t help but be impressed when you see MS sufferers raising funds and contributing to support
groups in the interest of helping other MS sufferers learn of the benefits of LDN.
 
Those that could be helped are not being helped
 
Whilst there's growing anecdotal evidence that LDN could be the most effective and economic treatment
option in the management of MS (for both the patient and the health system), the absence of clinical trial
data means the majority of practitioners are still not prescribing Naltrexone. Those that could be helped
are not being helped.
 
What‘s Disturbing about this Picture of Health?
 
When you read LDN stories on my website or others I’ve referenced here; the first thing you’ll notice is a
consistent thread of optimism running through this ever-growing body of health successes:
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 19/24
 
 
 ‘ … I have been on LDN for a little over 7 months now and it has given me a lot of my life
back. For the first time in many years, the progression of disability has stopped. … ‘
 
 ‘ … I have had NO new symptoms and NO further progression since starting LDN six
years ago. I still drive and do all my own shopping, cleaning, etc. I feel certain, had I not been on LDN, I
would not be as active as I am, nor as mobile. I wish every MSer had the chance to try LDN to see if they
are one of the ones who would benefit. … ‘
 
When you read LDN stories, the second thing you’ll notice is the extraordinary difficulty MS sufferers
experience when seeking to trial Naltrexone. MS is a debilitating condition with multiple adverse
symptoms. People with MS are already suffering. You can’t help becoming indignant at the injustice:
 
‘ … I phoned the neuro … to see if she would give me the Low Dose Naltrexone (LDN)
treatment. She had never heard about it … she was so excited about this … she had to clear it with the
legal dept … A week later she phoned to tell me the lawyers said no! … My health was being decided by
a group of lawyers!! … September 4, 2005: I am happy to report a small but significant improvement.
Last night for the first time in years I was able to lift my left foot and take a couple of heal to toe steps...
instead of dragging my foot or walking toe to heal. ... ‘
 
Where’s the official body that acts on behalf of patients?
 
Research, drug development, and clinical trials are commercially-driven by sponsors.  That’s okay, but
there’s no recognized body that can officially step up to the plate to speak and act on behalf of (advocate
for) all patients. I know this because I’ve tried, without success, to find an authority that is sanctioned to
do so.
 
Most officially recognized specialist ‘societies’ are sponsored by industries which are, as mentioned
earlier, commercially focused and have no incentive to recognize the extended benefits of a generic,
unprofitable drug.
 
The present system is unjust
 
The present system is unjust. It’s inequitable. It doesn’t place sufficient value on patient health success
stories. It doesn’t place sufficient value on advocating for the patient. It doesn’t place sufficient value on
patient-driven research or clinical trials. If it did, there would be a body sanctioned to speak and act on a
promising body of testimonials.
 
How many stories similar to the LDN story are out there? We don’t know, because they haven’t all been
collected, stored, and shared. That makes me feel uneasy and should make you feel uneasy.
 
A single health success story doesn't register on the public health radar. It is not considered evidence. A
growing volume of related health success stories, however; builds a compelling body of evidence that
can’t be ignored – and that’s my goal. ‘Proof of concept’ equates to proof of the value of health success
stories.
 
The collective LDN story is becoming an excellent example of this through the power of numbers. The
collective is greater than the single.  Whilst the evidence remains spread far and wide it does not hold
weight, it cannot be measured, and it cannot help build a compelling case.
 
Governments need to acknowledge the value of patient testimony
 
The collective has a louder voice than the single. Collectively, LDN health success stories provide
sufficient evidence to advocate clinical trials; the results of which could help many other sufferers.
 
The collective LDN story is also an excellent example of why ‘the system’ needs to change, why we need
to rebalance the scales and give more weight and credibility to patient testimony. We need an
organisation chartered to act on this type of evidence; an organisation that values patient testimony and
can make recommendations (without prejudice or conflict of interest) on behalf of patients from all
corners of the globe.
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 20/24
 
 
Supporting data for this essay is in the form of untested patient anecdotes of health success. Whilst I
firmly believe there is value in what I do, I am but an individual. I do not have the resources to validate
patient anecdotes or lobby for action.
 
Governments worldwide could prove they value and give credence to patient testimony
by implementing official bodies and processes chartered to act on compelling evidence
in the form of health success stories.
 
References:
(1) Low Dose Naltrexone Org – edited by David Gluck, MD - lowdosenaltrexone.org & ldninfo.org
(2) LDN Research Trust, UK – Linda Elsegood - ldnresearchtrust.org
(3) Case Health - Health Success Stories – Cris Kerr - casehealth.com.au & casehealth.com
(4) Dr M R (Bob) Lawrence, Dietary Research Ltd, Wales, UK -
msrc.co.uk/index.cfm?fuseaction=show&pageid=651&CFID=4799847&CFTOKEN=68687005
(5) LDN Clinical Trial in Multiple Sclerosis – patient-funded - mscenter.ucsf.edu/research.htm
(6) All LDN Clinical/Animal Trials lowdosenaltrexone.org/ldn_trials.htm
(7) Oral Presentation at the IV International AIDS Conference in Stockholm , June 1988 -
lowdosenaltrexone.org/ldn_aids_1988.htm
(8) Jill Smith, Professor of Gastroenterology, Pennsylvania State University, ‘Low Dose Naltrexone Therapy
Improves Active Crohn’s Disease, American Journal of Gastroenterology, Jan 11 2007 -
ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&list_uids=17222320
(9) The long-term survival of a patient with pancreatic cancer with metastases to the liver after treatment with the
intravenous alpha-lipoic acid/low-dose naltrexone protocol -
ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16484716&query_hl=1&
itool=pubmed_docsum
(10) Burton Berkson, MD, PhD – presentation, National Cancer Institute meeting – April 2007 - 
lowdosenaltrexone.org/_mm/Berkson_Presentation_Apr_2007.pdf
(11) Agrawal YP – Low-dose naltrexone in multiple sclerosis – Med Hypotheses 2005;64(4):721-4 – Science Direct
(Elsevier) - sciencedirect.com/science?_ob=ArticleURL&_udi=B6WN2-4F3FDWS-
3&_user=10&_coverDate=01%2F01%2F2005&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C0000502
21&_version=1&_urlVersion=0&_userid=10&md5=0e326c3899ac6b7cfac6459cb66f3c19
(12) Bernard Bihari, MD – Curriculum VITAE & papers - lowdosenaltrexone.org/bbihari_cv.htm
(13) Ian S. Zagon, PhD - Professor of Neural and Behavioral Sciences, Pennsylvania State University –
fred.psu.edu/ds/retrieve/fred/investigator/isz1
(14) Jaquelyn McCandless, MD, Jack Zimmerman, PhD – HIV clinical trial Mali -
lowdosenaltrexone.org/developing_nations.htm
(15) Experimental Evidence for Immunomodulatory Effects of Opioids, Landes Bioscience -
ncbi.nlm.nih.gov/books/bv.fcgi?rid=eurekah.section.10979
(16) Role of nitric oxide in inflammation mediated neurodegeneration – PMID: 12076984 -
ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12076984&dopt=AbstractPlus
(17) Dr Pat Crowley, County Kilkenny, Ireland – LDN Documentary 
lowdosenaltrexone.org/_conf2006/P_Crowley1.mov
(18) Dr Skip Lenz, Skip’s Pharmacy, Florida – Survey 2006 - 
ms-people.com/forum/index.php?s=dfe1764bb0265b16d51eff70e4a97fa5&act=Attach&type=post&id=14480
(19) Dr Phil Boyle - fertilitycare.net/documents/LDNInfo_000.pdf
(20) Dr Kamau B Kokayi interview with Dr Bernard Bihari – September 23, 2003 - gazorpa.com/interview.html
 
LDN Advocates:
(1) LDN Discussion Group - health.groups.yahoo.com/group/lowdosenaltrexone
(2) LDN Conference Media – LDN Conference 2007 – DVD anticipated Jan 2008 – Cyndi Lenz -
skipspharmacy.com/sppress/?cat=8
(3) LDNers - ldners.org
(3) Gazorpa - gazorpa.com
(4) Mary Bradley's Books - marybradleybooks.com
(5) LDN Diary - LarryGC - larrygc.com/ms
(6) LDN Discussion - ldn.proboards3.com/index.cgi
(7) LDN Forum, Germany - f27.parsimony.net/forum67727
 
Previously Published:
a) published on News-Medical.Net, 1 December, 2005
Drug stops multiple sclerosis - but sufferers can't get it!
Cris Kerr highlights Naltrexone in her latest issue of 'Case Health - Health Success Stories' - news-
medical.net/?id=14749
b) alternate version entitled 'Anecdotal evidence points to relief for MS sufferers' was published on ONLINEopinion
Australia's e-journal of social and political debate, 3rd January, 2006
- onlineopinion.com.au/view.asp?article=3905
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 21/24
 
 
 
 
 
 
 
 
 
 
 
 
Cris Kerr, 16 November, 2007
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 22/24
 
 
Shared Vision for Health
 
by Cris Kerr, Administrator & Community Health Researcher, ‘Case Health-Health Success Stories’
website, 23rd October, 2007
 
Health systems should be recording and sharing successful health outcomes ... because success breeds
success ... and because when the path to success is shortened, people suffer less and productivity from
the same limited health resources is enhanced.
 
Premise
 
When you want to achieve success in any field the first thing you do is research how others have
achieved success.
 
In the standard western medical system, successes and failures should be recorded and shared within a
framework - alternately referred to as Evidence-based or Outcome-based Medicine - with the primary
goal being the application of best long-term practice in diagnosis, patient care, and treatment outcomes.
 
Such a framework has obvious merits but historically, the patient's perspective hasn't been sought and
included as corroborating evidence. Typically, the health system;
 
1) doesn't place sufficient value on confirming success or failure via the patient perspective, and;
2) doesn't record or recognize success or failure when/if it occurs outside the standard medical system.
 
Who is in the best position to provide evidence of health success or failure? Arguably, it's the patient.
 
Advocacy
 
The Case Health online database was created to fill this gap in the health system, and advocate the
value of patient testimony. I encourage individuals to freely share information on health success in the
hope of making the path to health success shorter and less stressful for others.
 
The website collects and shares health success stories (personal or research) through an online
database. Keywords are attributed to each story and this framework serves a dual purpose:
 
The database can be searched by symptom, condition, or treatment so patients can discuss what they've
found with their doctor. The database also collects significant research findings, so analysts can gain
'insights' into cause and effect and develop theories for curiosity-driven research, or gain insight into
public health statistics, benefits, or risks.
 
There are many ways people can contribute to their communities but most haven't considered
information as one of those ways. They can help improve another person's health by sharing detailed
information on how they achieved their own health success - and if they do that they contribute
something more valuable than cash to their community.
 
Optimum health is a universal goal.  Challenges and resources differ between countries - but we are all
human and we all share the same desire - to acquire and employ knowledge that results in the least
invasive and least expensive path to optimum health.
 
My Case Health website recorded its first controversial Low Dose Naltrexone (LDN) treatment health
success story in November 2003. A significant increase in LDN linked success stories prompted me to
write the article; * 'Drug Stops Multiple Sclerosis - But Sufferer's Can't Get it'. The article highlights the
growing number of LDN health success stories linked to many auto-immune based diseases, the
absence of mainstream recognition of patient testimony, and; advocates for health framework reform.
 
The Case Health website remains at concept stage, however; the article *'Drug Stops Multiple Sclerosis
– But Sufferer's Can't Get it' represents an inaugural proof-of-concept document.
 
'Case Health - Health Success Stories' is a free worldwide community health service website that collects
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
Revised – July 2007, November 2007
Page 23/24
 
and shares patient anecdotal evidence of success and news of significant research results. The site was
created in 2001 and is located online at casehealth.com.au and casehealth.com.
 
Proposal - Vision for Health Reform
 
With governments around the world presently considering or developing new health frameworks, I hope
you'll agree the timing is right for visionary reform:
 
Our health systems should be recording and sharing health successes and failures (learnings), including
patient perspectives because;
 
a) success breeds success and when the path to success is shortened, people suffer less, and;
b) because 'learnings' can alert us to risks associated with failure, consequently reducing risks.
 
What would a 'Shared Health Accomplishments and Research Environment' look like?
 
1. A robust, secure health IT infrastructure sharing successes so they can become repeatable and
sustainable, and; sharing failures so they can be avoided.
 
1a. A new Medicare rebate would be paid to all Health Professionals who're prepared to spend time
documenting and sharing detailed patient histories of successes and failures (learnings) through a
central database. Implementing this type of framework not only acknowledges quality patient care and
treatment but ensures success is repeatable and sustainable, and; guards against treatment failure.
 
To substantiate the integrity of submissions, the patient would confirm or counter-sign. The database
would build slowly, with integrity, and therefore grow more valuable with time, delivering ever-increasing
dividends for the future.
 
A 'weighting' would be applied to each submission, depending on the qualification of the Health
Professional. Submissions by less qualified allied health professionals would initially be assigned a lower
'weighting' but would attract a higher 'weighting' as the volume of corroborating testimonies increases.
 
1b. In acknowledgement that any person who's achieved success or experienced failure has information
of value to share, the database would accommodate all health successes and failures; including those
that occur outside the standard health system. Any individual could opt to submit their health story
details, that is; how they achieved success or how they failed (what they learned) - so they may
contribute to the volume of knowledge. Submissions would be 'weighted' accordingly but would attract
higher 'weighting' with regard to public health benefits or risks, or when the volume of corroborating
testimonies increased.
 
1c. The framework would be governed by systems and processes that promote equity and quality, and
guard against infiltration of conflict of interest, commercialisation, or bias to maintain database integrity
and protect this valuable investment in the future health of all.
 
1e. Database searches (non-personalized details only) would be freely accessible to all, including health
researchers, analysts, and the general public. Names and addresses would be protected by law,
secured, and shielded in a separate database - and would therefore not be accessible via search,
however; special dispensation could be given for a rare event - such as research or analysis that
indicates a major public health benefit or risk necessitating deeper analysis, evaluation or validation.
 
When Health Systems are documenting and freely sharing all successes and failures, including patient
contributions, quality and productivity from the same limited health resources will be dramatically
enhanced and people will suffer less.
 
NB *Alternate version entitled 'Anecdotal evidence points to relief for MS sufferers' was published on
ONLINEopinion Australia's e-journal of social and political debate, 3rd January, 2006
– URL onlineopinion.com.au/view.asp?article=3905
 
Published by OnlineOpinion 23rd October, 2007: 
- URL onlineopinion.com.au/view.asp?article=6531
© ‘Case Health – Health Success Stories’, 2006 - casehealth.com.au
 
 
Permissions:
© Case Health – Health Success Stories – casehealth.com.au - Case Health Pty Ltd
Permission to reproduce the latest version of articles; 
 'Drug stops multiple sclerosis - but sufferers can't get it!' (article only – not stories) 2007, and;
 ‘Shared Vision for Health’ 2007;
is granted on the provision the articles remain unchanged/unaltered in any way, up to and including publication
details and include this permission advice.
 
Postscript request to publishers:
If you reproduce articles, I'd sincerely appreciate a courtesy advice.
 
 *******************************************


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