Glasgow LDN Conference 2009

Introducing 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.

Make an appointment to talk to Dr, Tom Gilhooly about LDN. Your information will be treated in the strictest confidence, and we will contact you soo after your form is submitted to us.

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The following report summaries the proceedings of the First European LDN Conference held in Glasgow, Scotland on the 25th of April 2009. The conference sessions were also recorded and videos will be available soon.

LDN Conference Report

The conference was opened by Linda Elsegood from the LDN research Trust who outlined her own experience with MS and the great response she had to LDN. This very positive response led to her setting up the charity dedicated to supporting and encouraging research into LDN in the UK. Linda announced that the charity has raised £22,000 to date although has yet to find a research project to support.

Dr Tom Gilhooly gave a resume of the research on LDN published to date including animal and human studies. The first publication on low dose naltrexone was an animal study by Prof Ian Zagon from Penn State University in 1981. He is still active in LDN research and is currently preparing for publication some very exciting animal research on MS which confirms the efficacy of LDN in the animal model for MS. Significantly, this study was funded by the MS Society of America giving a clear message to the only accredited funders in the UK.

Five disease areas have been subject to publications on LDN in human studies. The most recent was a ten patient pilot study on Fibromyalgia published in Pain Medicine in April 2009. This showed significant improvements in pain and mental health in six out of ten patients.

The study of primary progressive multiple sclerosis by Maria Gironi from Milan was published in 2008 showing a reduction in spasticity and minimal side effects. The patient funded MS study from University of California on Dr Bruce Cree showed improvements in quality of life but has not yet been published. The very impressive Crohn’s disease pilot study from Penn State was outlined as well a study showing improvements in quality of life among patients with haematological cancers. A study in irritable bowel syndrome has also been published showing positive effects of LDN.

Pharmacist Stephen Dickson gave a very interesting outline of the challenges he has faced in trying to supply LDN to patients in the UK. The saga of LDN capsules being impounded and then destroyed by Customs, as the MHRA decided that foreign imports were no longer allowed, was shared with a very interested audience. Despite the difficulties with dealing with the various regulatory bodies, he is committed to continuing to deliver this service to patients throughout the UK.

Dr Burt Berkson delivered a brilliant lecture on his treatment of cancer with LDN and intravenous alpha lipoic acid. Dr Berkson has published several remarkable case studies and he illustrates the results of treatment with PET and CT scan images which show the effect of this treatment on even very advanced cancers. He recently presented these cases to the National Institute of Cancer in America to great acclaim and is planning more extensive research soon.

Mr Joseph Wouk gave an impassioned performance where he described his own LDN experience which has resulted in almost complete disappearance of his symptoms. Joe has written a book about his experience called Google LDN which is available from Amazon and also online. Joe finished off his talk with a video of Pink Floyd which completed his presentation of “Saving Lives, One at a time”.

Dr Phil Boyle from the Galway Fertility Centre, described the incredible fertility work that is carried out at this centre which included LDN in many cases. Although predominately a fertility clinic, Phil has had requests for LDN from many patients with MS and other autoimmune conditions. He reassured the audience that LDN is safe in pregnancy having had fifty healthy babies born to mothers who took LDN throughout the pregnancy. Not only that but he feels LDN greatly improves pregnancy outcomes and reduces risk of prematurity. LDN is also useful in treating endometriosis and polycystic ovarian disease. Dr Boyle made the point that LDN works best when given alongside appropriate nutritional support including vitamin D and omega 3.

Dr Tom Gilhooly then outlined the progress with the Tyscore assay which measures immune activity which has now reached the stage where it is ready to be validated against other standard measures of oxidative stress. He also updated the conference on progress with the application for funding for the LDN MS study and on a new study on Autism which will be a joint effort between the Autism Treatment Trust and The Essential Health Clinic.

The conference concluded with an expert panel discussion where Dr Bert Berkson, Dr Bob Lawerence, Dr Pat Crowley and Skip Lenz - a pharmacist from Florida, answered questions on LDN from the audience.

There was a lively discussion and numerous interesting points raised including timing of LDN dose. The tradition of always dosing a night was called into question by both Stephen Dickson and Dr Tom Gilhooly, who find no difference in clinical outcomes with morning dosing but better compliance and less side effects. Skip Lenz whose pharmacy supplies over 20,000 patients said he was “ an old Bihari guy” who stuck to night time dosing as there was evidence of a greater endorphin peak at night. It was mentioned that Prof Zagon felt that timing of dose was not important to clinical efficacy as long as the drug was only taken once daily.

A very successful first European LDN conference ended with the announcement that next years conference will also be held in Glasgow on 23rd and 24th April 2010. It will include one day which will be purely medical/scientific and an open day similar in format to this conference.

Next year’s conference will be addressed by the author of the first paper on LDN in 1981, Prof Ian Zagon.

Delegates can pre-register here 2010 European LDN Conference pre-register

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