LDN Treatment, some background information
private April 29th. 2009, 6:50amIntroducing LDN Treatment
Low Dose Naltrexone - LDN - was developed as a treatment by an unconventional route, with no big pharmaceutical company driving the research and development of the drug. This is seen as a major handicap to the growth of LDN as a treatment for a number of chronic inflammatory conditions, including Multiple Sclerosis, Crohns Disease, IBS, Chronic Fatigue Syndrome, Parkinson’s Disease and Autism among others.
Low Dose Naltrexone is essentially a lower dose of the drug Naltrexone, a synthetic analogue of naloxone which is licensed in the treatment of opiate dependence. The standard dose of 50mg Naltrexone contains a potent antagonist of the mu opiate receptor which completely blocks the euphoria from opiates. It’s very potency reduces its usefulness in addiction treatment as the blockage of the natural endorphins as well as heroin and other opiates, often leads to a low mood and depression. It was a doctor working in addiction that first saw the potential for a low dose of naltrexone to be of use in other conditions.
How did LDN treatment develop?
In the early 1980’s, the discovery of a devastating new illness, acquired immune deficiency syndrome known more commonly as AIDS, left the medical community struggling to cope. AIDS was a deadly blood bourne virus which reduced the immune defences and there was no obvious way to approach this disease. Dr Bernard Bihari was working in New York with opiate addicted patients many of whom had also developed AIDS from sharing injecting equipment. He had shown that AIDS patients had only 25% of the normal endorphin levels. He postulated that although Naltrexone was a relative failure as an addiction drug, its potent action could actually be used to increase endorphin levels.
Most of the endorphins are produced between 2.00am and 4.00am by the action of the pituitary and hypothalamic glands in the brain. Bihari used small doses of naltrexone (1.5mg to 4.5mg) to suppress endorphin levels initially which then provoked a rebound increase in endorphin production. The theory seemed to work as a clinical trial and numerous case studies showed better outcomes and significantly better CD4 counts. Although Dr Bihari did carry out some research, he found it difficult to get this research published however and apart from some poster presentations did not lay the research groundwork for others to build on.
LDN treatment for Multiple Sclerosis
In May 2000 Dr Bihari reported that four patients with Multiple Sclerosis - MS had shown a surprising and significant improvement in their conditions after LDN Treatment. Dr Bihari postulated that the reason for this improvement was due to the same mechanism as in the AIDS patients, an improvement in the immune system due to an increase in endorphin levels. This was hugely controversial as the conventional treatments for MS are generally immuno-suppressant so the immune boosting explanation for LDN’s mode of action seemed to be a contradiction. Without any substantial research to support his hypothesis, the reaction of the majority of neurologists was to dismiss both the idea and the drug.
LDN will not go away..
LDN is perhaps one of the first of a new generation of drugs which has been promoted and preserved by the MS community itself. LDN would just not go away.
Despite rejection by the vast majority of MS specialists and without a research base to build on, the patients who could possibly benefit from the drug kept it alive one way or another. The internet has played a vital part in this incredible story as patients from across the globe compared success stories and fueled the desire to try a treatment that was not being offered by their GPs or Neurologists. It was no wonder that they were keen to try a treatment which was relatively non-toxic and was also effective in two of types of Multiple Sclerosis, primary and secondary MS, which were not suitable for conventional treatment.
The interest in LDN treatment would not go away but the struggle to get a prescription and a prescriber was a considerable challenge for most patients wishing to access this form of treatment. This difficulty has led to some less than optimal practices such as internet or telephone prescribing of the drug without a face to face consultation. For patients desperate for access this treatment these routes of prescribing were a “Godsend”, but for the reputation of the drug and therefore its wider application, this form of prescribing was damaging.
The only real way of getting this treatment to a wider patient group is to involve more medics which the internet prescribing etc was making less likely. Doctors were only going to be interested in being involved in the LDN treatment of patients if it could be shown to be based on science and research. Without a pharmaceutical company funding this research it is difficult to give this security to doctors to encourage involvement in prescribing this drug.
But LDN still refuses to go away. Despite the reluctance of conventional medicine to engage with this treatment there is a dynamic that keeps this treatment going.
Why will LDN not go away? The only reason for this can be the fact that this treatment works for the patients on the ground. There is no other real explanation for its popularity among people with nothing to gain but improved health. How can the medical profession completely ignore such a potentially effective treatment for such a devastating and difficult to treat condition as MS?
Our LDN Treatment website has been set up to encourage greater medical involvement in the prescribing and research of LDN. In partnership with some of the most influential MS charities, LDN Research Trust, MSRC and MS Trust, we aim to improve the status of LDN to ensure that this treatment becomes available to all patients with MS and other conditions that may benefit from access to LDN.
One of the main obstructions to the understanding of how LDN works is of course the lack of research. The endorphin mechanism of action is a possible explanation for its action in MS but it is not the only theory of how it may work. More research is required.






please could you tell me where i can get ldn from ?
my dad has had ms for over 20 years he carnt get out of the house,
he was a very strong man before he got ms now all he does is sit in the
house all day, he lives on his own which is a big strane on me as i have
2 do his shopping cleaning etc, i would just love for you to give me
more information on this new drug ! his doctors dont seem 2 b botherd
or they are just to busy with other paitents, please can you help !
thank you.
carmen birtles
After watching This Morning On ITV there was a boy and a girl who was digonosed with MS at about the same age that as myself. I was very keen to look up the LDN treatment as i am now 39 and heve tryed lots of different medication and i am hoping this will be a good one!
Thanks
Time is running out for many MS patients in reguard to losing their mobility as with myself, we often feel that the processes that drugs have to go through hold up possible treatments by years, years many of us do not have. Why can in todays society a definative answer not be sought and given for the use of such drugs as LDN for MS patients who are desperate for news and a medical discovery that will enhance their lives and give hope for their futures.
In my own case my disease has moved on rapidly over the last 18 mnths and any news that can give me hope is more than welcome, i am eager to try anything that can keep me mobile and possibly halt the progress of my disease.
The use of stem cell treatments is one major hope we all hold on to and prey that we can regain our lives at some stage, but when it comes to accessing possible treatments buearocracy literaly stops access.
Paul
I have been on LDN since Oct 07, diagnosised Sept 07. I have not had any attacks since starting LDN. I was very lucky, when I asked my doctor for a prescription, she was already knowledgeable about LDN. Go to - http://www.losedosenaltrexone.org or http://www.ldners.org. Very helpful info. Also there is a chat/info site on Yahoo.com find groups - join the group - lowdosenaltrexone. You can even get a list of doctors that are know to prescribe. LDN is also available without a prescription online. I noticed a difference within a week, as well, had improvements after that. LDN will not necessarily make your symptoms 100% better but for me 90% is good enough. The best aspect of LDN is that it WILL STOP THE PROGESSION.
Try it, very little side effects, mostly sleep disturbances until your body gets used to it. I had no side effects at all. It is well worth the effort. Kristie Pittendreigh kdpitt1@telus.net Feel free to contact me for more info.
My daughter (28) has suffering fr ME severly for >8 yrs. As many of her symptoms are v similar to MS, I believe she’s actually suffering fr MS. All 20 odd doctors she saw are ignorant, negligent & dismissive despite the many serious phsyical symptoms . We’ve to do our own research continually & have only found out abt LDN on the net by accident fr autism circle. She has tried LDN for 8 weeks now but after an inital improvement of few weeks, she has relapsed into former state with spasticity, severe headaches, shivers, wild personality changes etc and one new symptom is that LDN has given her 4 periods in a space of 8 weeks which made her bedridden. This is not mentioned in Dr Bihari’s book or other literature on LDN we have read. Has any one experienced this w LDN? Any info or advice will be greatly appreciated. We still believe in LDN and am seeking a way to take it without the side-effects particularly the menstrual cycles.
I have been taking LDN for nearly 2 years now and I believe it has help greatly to reduce the effect of ME/CFS. I am stronger and have more stamina now than 2 years ago, also when I get a cold, which I used to do regularly the cold symptoms are greatly reduced and whereas over 2 years ago the cold would last up to six weeks now I only suffer for a few days and usually only once a year if at all. I believe my immune system is operating better than before due to taking LDN. I am so grateful that my Doctor is open to experimenting with treatments and prescribed this for me.
Kitty, Australia
nd
buongiorno ,grazie and God bless you
sally clarck
HI I HAVE BEEN ON LDN ON AND OFF 1 YEAR LDN HAS FIX MY BALANCE I DO NOT FALL ANY MORE AND ALSO MY BLADDERPROBLEMS I CAN SLEEP ALL THREW THE NIGHT WITHOUT GOING TO THE BATHROOM ,I ALSO COULD NOT DRINK A GLASS OF WATER WITHOUT RUNNING TO THE BATHROOM,I USED TO PEE ON MY SELF BEFORE I REACH THE BATHROOM,I AM HOPEING OVER TIME IT HELPS MORE THINGS RIGHT NOW I AM HAPPY FOR THE TWO!!!!!!! NANCY
I have PPMS and learned about LDN in Feb. 2005. I have been taking it since then in a 3mg dose at 9p.m. each day. I believe it has helped with fatigue, but not with urinary incontinence or the weakness in my right side. My right hand and leg are clumsy, and I have real trouble with small motor movement such as writing and typing. I have not kept up with developments about LDN and am now catching up. I have been reading your site, and I notice that most MS patients are taking a 5mg dose. Is this the standard dose? Do you think I might see benefits from a higher dose? My doctor has been very supportive of my taking LDN, so I don’t have any trouble getting my prescription. The other symptom that I have, and that seems to be more evident, is the burning, tingling pain in my legs, especially at night. I am so glad to learn that LDN is being studied and promoted. I would be very grateful for any opinion you have about my case. I live in southwestern Saskatchewan, Canada. Thank you.
Yours sincerely,
Phoebe Bunnell
hi,
My daughter was diagnosed to have ms about 4 yrs ago.Up until 3 wks ago she was very active
in gyms and workouts on a regular basis.She had a serious seizure about 3 wks ago and has been having smaller seizures since then.Keepra has not helped and she now has been switched to tegretol.Do you think ldn would help with these seizures.Thank you.
Liam
Hi everyone, I am asking if you are a UK citizen and if you would sign a petition to have LDN go through trials, which would give research based evidence to highlight how it works!
Please go to the link:
http://petitions.number10.gov.uk/LowDNaltrexone/
and sign up….WE NEED PEOPLE TO SIGN SO THAT THE GOVERNMENT WILL GIVE THE GO AHEAD FOR THE TRIALS!
You can see by the examples on this site it has made a difference to people’s lifes… lets make it available to all who can benefit from it!
Thanks for your support,
Margaret Anne
How long do you have to take LDN to get hair growth. My son has Alopecia Universal
I have just received my first bottle of LDN after a 3 week struggle to get it!
My doctor was open minded enough to listen to me and go to a website with me which explained what it was. He new nothing about the drug previously and so was cautious about supplying it at first but then after one week wrote out a prescription for me but then found out that he was not licensed to give it to me!
He then found a private doctor in London who would write a prescription but he charged me an initial £100 to do this and repeat prescriptions are £50. Ever had the feeling your being ripped off! The drug costs just £15 for a months supply, available from Dixons in Glasgow but they can only supply it with a prescription! Why oh why is it not available on the NHS. I have worked all my life and paid my dues, now I am 64 and should receive this for nothing but my GP is powerless to prescribe it. I think the whole system stinks, it needs a kick up the backside! There are thousands of people like me who could benefit from this drug if only they could get it on the NHS or at least just pay for the true cost of the drug instead of paying a fortune for a private prescription. I just hope the greedy doctors who must take all of 1 minute to write out these prescriptions can sleep at night!
Albert
I have just received my first bottle of LDN after a 3 week struggle to get it!
My doctor was open minded enough to listen to me and go to a website with me which explained what it was. He new nothing about the drug previously and so was cautious about supplying it at first but then after one week wrote out a prescription for me but then found out that he was not licensed to give it to me!
He then found a private doctor in London who would write a prescription but he charged me an initial £100 to do this and repeat prescriptions are £50. Ever had the feeling your being ripped off! The drug costs just £15 for a months supply, available from Dixons in Glasgow but they can only supply it with a prescription! Why oh why is it not available on the NHS. I have worked all my life and paid my dues, now I am 64 and should receive this for nothing but my GP is powerless to prescribe it. I think the whole system stinks, it needs a kick up the backside! There are thousands of people like me who could benefit from this drug if only they could get it on the NHS or at least just pay for the true cost of the drug instead of paying a fortune for a private prescription. I just hope the greedy doctors who must take all of 1 minute to write out these prescriptions can sleep at night!
Albert
Hello, I am Maggie,Ihave had ms for 20 years. My 39year 0ld daughter died over a year ago , this on its own is very hard to explain how treacherous and painfull this is for us.Since this happened the effect on the m s has been very bad,we have a grandson who still lives with his father with a lot of input from me. The restrictions of the ms do not let me do as much as i want to.I WANT TO BE WELL FOR HIM. What can i do ,I am a brave person and will do anything to fight our need to get this drug out there for us. Any advice ??????????
I live in Victoria British Columbia and having been trying to find a doctor to prescribe LDN for me since January 2009. No luck! My MS symptoms are worsening and I’m getting very discouraged.
Kate
I started taking LDN in June of 2009 for Fibromyalgia. I also have glaucoma. At first there was no increase in my intraocular pressure. After about two months it went up slightly. It is now at a place where I will have to discontinue the use of LDN. I have not taken any LDN for the past three days and my eye pressure has come down. I know that eleveated eye pressure is not supposed to be a side effect of the drug. I am so disappointed to have to stop as so many of my health problems have disappeared.
Is there a permanent effect to the immune system after six months of treatment. Would I still benefit from taking it less often if i could manage my eye pressure by doing this.
Pam
I only learnt of LDN last week. You’ve got to find doctors who are willing to look outside the square so found one who gave me a script … in Australia it costs $100 for 100caps. Will begin next week. I’m hoping that the pain of my fibromyalgia will reduce (disappear would be better!).
I have fibromyalgia and Hashimoto’s … I’ve read lots about fibro (waiting for results of second of Stanford trials) but nothing about Hashimoto’s. As thyroid problems seem often to be concommitant with fibromyalgia, I hope someone of the medicos at this year’s conference will have some information on Hashimoto’s and LDN, although (whinge, whinge, moan, moan) I know it’s not so prominent in the minds of those who deal with autoimmune problems. While I’ll get regular bloods done, I’d like to have some idea of what I might expect/hope for.
I should also add that I was not diagnosed with anything, but was losing function of my arm and legs, or at times both hands, as well as having shortness of breath and transient facial paralysis; also had bladder and bowel issues, circulation problems, memory problems and muscle wasting. In other words i presented like an MS patient, but bc i knew i had mold exposure the doctors just dismissed me to rot and die- despite the fact that I was only 38 and have young children.
I discovered my house had toxic mold, , and went on cholestyramine to bind the toxins. I I also did hyperbarics to heal the damage that had already been done as well as several supplements such as fucoidan, n acetyl cysteine. Yet, the LDN has changed my life. I got somewhat better, with the other treatments but after being on LDN 3 months, I now actually feel alive and can function- almost normally. I was bedridden and 105 pounds one year ago (I’m 5′8), now I weigh 127. I feel like Lazarus.