2010 LDN Conference Report

Despite this, the conference speakers did not disappoint! First to educate us further on LDN from a pharmacists point of view, was Stephen Dickson, from Dickson’s Chemist in Glasg0w. Stephen had kindly stepped in when Brendan Quinn had been unable to travel to Glasgow, from Ireland, due to the air chaos.

Stephen reported that the numbers of patients that they dispensed LDN to, had risen to over 2500 and the numbers of GPs prescribing had risen greatly to 683. He reported that LDN had been prescribed for numerous different auto-immune conditions, from MS, CFS and Crohns, to Psoriasis and Asthma. He also reported that LDN is prescribed for different cancers too.

Furthermore, Stephen reported that Dickson’s was inundated with calls regarding LDN and that customers seemed better educated and more informed about LDN and it’s benefits. Encouragingly, he reported that the feedback from patients taking LDN was generally very positive.

Stephen highlighted the importance of optimum levels of Vitamin D in the body as it normalises the immune system. Interestingly, he explained that it is believed that babies that are not exposed to enough vitamin D in their mother’s womb can have an MS gene “switched on”. Taking vitamin D, through supplements and/or exposure to a decent amount of daily sunlight can counteract this fact.

Stephen continued his thought provoking presentation with information on Resveratrol, a compound found in the skins of red grapes and therefore in red wine (though you’d need to drink hundreds of glasses to obtain the optimum dose so safer to take a supplement!). He explained that Resveratrol is thought to decrease the immune responses in MS as it triggers the apoptosis (cell death) of T-cells (bad cells). Stephen explained that the optimum dose is 1000-1500mg per day and that he will happily stock this supplement  at Dickson’s if there is enough demand.

Dr Gilhooly then thanked Stephen for his excellent presentation, prepared at short notice, and then welcome his esteemed colleague Dr Pat Crowley from Ireland.

Dr Crowley spoke to the conference of his life in Ireland as a GP in a community practice.  He explained that he had had the opportunity several years ago to interview Dr Bernhard Bihari about LDN. He explained that LDN can boost the endorphin levels by 200-300% and that they are the key to the immune system. Interestingly, he also explained that the endorphin levels in MS patients is around 20-30% of normal. The T-cell production is also out of order too in this patient group. Dr Bihari reports that the MS symptoms diminish or disappear once T-cell production regulates.

Dr Crowley recommended reading the work done by Dr Jill Smith who had published a paper on LDN and Crohn’s in The American Journal of Gastroenterology in 2007. He encouraged the conference audience to visit www.ldndatabase.com, where those taking LDN can register their names,  report their experiences with LDN, and report the conditi0ns that it has helped.

Dr Gilhooly then thanked Dr Crowley for his interesting presentation, and then extended a warm welcome to LDN patient Zoe Camen, who kindly talked to the audience of her experiences of Crohn’s disease and the relief that LDN had brought her. Zoe’s presentation was poignant and inspiring in equal measure, as she explained that she had kept a journal record of her experiences and of how Crohn’s disease had taken it’s toll on her life. Zoe spoke of the pain she had experienced, and of the great deal of weight she had lost and how she had been at her lowest ebb.

Zoe then discovered LDN, through relatives in America, and has never looked back. Through taking LDN, Zoe reclaimed her life, she gained weight and gradually increased her diet. She no longer spent days running in and out of the toilet and her quality of life improved greatly.

Dr Gilhooly then thanked Zoe for her excellent and moving presentation. He explained that, in his experience, Crohn’s and Chronic Fatigue Syndrome (CFS) respond best to LDN.

Following a delicious lunch, the audience waited with baited breath for the much anticipated presentation from Dr Jarred Younger from Stanford University in America! Unfortunately, due to the travel chaos, Dr Younger had to talk to the audience via Skype video link, and after a few technical hitches, the audience were able to see him clearly on screen. Dr Younger has been researching the benefits of LDN for those with Fibromyalgia and his preliminary findings are looking extremely promising. He has been investigating the effects of LDN on the microglial cells in the brain and the spinal cord. Dr Younger is proposing that these cells are constantly throwing out inflammatory markers in those with Fibromyalgia and that these patients may also have an exaggerated response to opioids and cortisol. LDN decreases the excitability of these microglial cells and therefore may be beneficial to those with Fibromyalgia.

At the time of press, Dr Younger was continuing to analyse the results of his study in greater detail. We will be able to bring you his indepth results as soon as his research paper is published.

Next to address the audience was Maija Haavisto  from Finland. Maija had kindly agreed to talk to the conference about her experiences of LDN and Chronic Fatigue Syndrome (CFS). She explained that she had struggled to get help for her condition as CFS is simply not recognised in Finland, and that she had tried numerous medications in a bid to ease her symptoms. Eventually, Maija began taking LDN and found that her symptoms improved greatly, her pain decreased and her energy levels improved greatly. Maija has written a scientific textbook called “Reviving The Broken Marionette: Treatments for CFS/ME and Fibromyalgia” that reviews over 250 medications used in the treatment of these conditions, with over 1,000 references.

Dr Gilhooly thanked Maija for taking the time to visit us in Glasgow to share her LDN story. He then continued to welcome Christine Fowler, who had agreed to speak to the conference about her experiences of CFS and LDN.

Christine explained that she was a P.E teacher and that she had struggled for years with CFS. She admitted that she had had several spells off her work and that she had eventually met Dr Gilhooly by chance, when her own doctor was not available. Dr Gilhooly had suggested trying LDN and Christine decided to “give it a try”. Unfortunately, on this occasion, Christine stopped taking LDN after a few weeks and decided to try other options. Over time, her condition worsened, she had no energy for her family or to see her friends. Thankfully, she decided to give LDN another try and this time, she noticed a big improvement. Gradually, Christine has felt her energy levels increase and her pain levels decrease. She feels that she has “got her life back”.

Dr Gilhooly thanked Christine for her inspiring talk and joked that she must be getting better, as she was now able to keep up with him as he speedily walked down the corridors at his clinic! (and not many people can do that!)

Finally, nearing the end of a highly interesting day, Dr Tom Gilhooly led the conference through his thought provoking presentation on CCSVI (Chronic Cerebro-spinal Venous Insufficiency). Dr Gilhooly explained that there is growing evidence that CCSVI may be linked to MS. He explained that Professor Paolo Zamboni, a vascular specialist from Italy, had published a research paper that suggested there may be links between CCSVI and MS. This was being further investigated, on a larger scale, by the University of Buffalo in New York. Dr Gilhooly explained that CCSVI causes the blood to have difficulty draining away from the brain, and this causes iron to leak from the veins into the brain. This has been shown to be the case in a significant amount of MS patients in Dr Zamboni’s research. It is thought that this iron build up may cause damage to the brain.

Dr Gilhooly explained that The Essential Health Clinic in Rutherglen was now providing appointments for screening for CCSVI, which can be diagnosed by a specialist doppler scanning machine, and treated with venoplasty (a balloon is inserted into the vein and inflated to hold the vein open). He explained that his clinic has been inundated with calls regarding this and that the first round of appointments had all been filled. The Essential Health Clinic plans to operate a waiting list for those wishing this screening. This waiting list will be opened on wednesday 5th of May, and those interested will be required to pay a £100 deposit to be put on the waiting list. This is then deducted from the cost of the eventual screening or refunded to the person should they wish to be removed from the waiting list. Those interested can find information on this condition and can be placed on the waiting list by visiting http://www.essentialhealthclinic.com/.

Dr Gilhooly concluded the 2010 LDN Conference by thanking all those that had attended, the speakers who had provided us with such an informative experience, and also praising the work of groups such as The LDN Research trust and LDN Now (a political pressure group that have been petitioning the British Government to make LDN  available to all, and are now collecting signatures for their European Petition- click here to sign the petition). He encouraged those who were requiring anymore  information on LDN or where to find a GP to prescribe it, to contact Linda Elsegood from The LDN Research Trust. Linda has helped numerous people find LDN and get the help they so badly need. Please visit www.ldnresearchtrust.org for more information.

Finally, throughout the day, award winning TV producer/director Jill Marshall and her team were filming their documentary on LDN. Keep an eye out for Jill’s documentary on TV, you may be famous!

Video footage from the 2010 LDN Glasgow Conference will be available soon.

Source: Big On LDN 2010 © 2010 BIG ON. (10/05/10)

© Multiple Sclerosis Resource Centre (MSRC)