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We were introduced to the Clinical Trials Panel. Linda Elsegood was the first to speak. She told us all about the LDN Research Trust and, well, we all know how much she has done in the last year alone. The petition, her survey, and we're hoping we can get the UK to check out LDN. She gave a great presentation, her efforts are totally amazing. She flew from the UK to be with us.

Dr. Zvonko Mir flew in from Germany. What a treat to hear so many different accents. And thank you for speaking in MY language. When I get emails from non-English speaking countries, I thank them for knowing how to communicate in English, otherwise there wouldn't be much (any?) communication to my ears. Again, I think I can type for many who were present, we appreciate your efforts greatly.

Seyni Nafo seems to have a great passion and I dare say, if anyone can bring LDN recognition in Africa, he will be the one! Thank you so much for coming to New York. New roads are being formed around the world! Just the beginning!

And finally, Dr. Myra Gironi, from Italy. I think I understood most of what she was saying, as I told her when we chatted later in the morning. But my MS ears just wasn't able to translate quick enough, but the slide show presentation helped greatly. Beta Endorphins... the key to it all??? Although, I must say, I loved hearing her speak, your research with BE's should be quite beneficial going forward, but with her voice and accent, it really didn't matter that I couldn't catch everything... it was like music. Now, so those who weren't there can get a little visual.... Dr. Myra Gironi, were you ever Miss Italy? You are in my book. Did I just type that? Yeah...

So that was the Clinical Trials Panel. UK, Germany, Italy, and hopefully some action in Africa. Irmat's in NY has already offered to provide the LDN doses and placebo caps for a trial in Mali, Africa for HIV. I think it's ok we on this continent help as much as we can, but I really think that if we can get other countries to recognize it, 1. the USA may have to??? or 2. WHO CARES, just keep my prescriptions coming, and let the news from around the world start driving USA's doctors into the new millenia.

LDN is the Century's Breakthrough! Yes??? no? I thought I was pretty impressed with LDN, I READ messages, I read websites, I read a lot.. and yeah, I say a lot too, eh? But I'm still processing the conference. I'm typing it because it's fresh in my mind and who can sleep? June 11, 2005. If each of us made a ripple, today should be the launch of a major boulder.




Remarkably, the schedule posted on the website was amazingly kept to. 11:00 was the Physicians Panel.

Dr. Bob Lawrence. It was a great pleasure meeting you. I am glad we can all now agree that NO BREAK is needed Symmetry around the globe unites us all going forward, I'm glad we all now agree. As I mentioned at the conference, I only missed dose #359. The conference was Day 787 for me. It was great to hear you say that. I don't think you saw the smile on my face. I'm so glad you could join us.

And then we heard from Dr. David Gluck, as a 10 year retired Physician, who, thanks to Dr. Bihari, still has a great hand on the pulse of today's medicine, what more can I say that I haven't already? It's going on 3am now... my fingers just wanna keep going.

Great job by all! And I'm sorry, if you were not there, the video will just not be the same. Next year could be in Washington DC, start planning now!

----- Original Message -----
From: mboylebradley
To: lowdosenaltrexone@yahoogroups.com
Sent: Sunday, June 12, 2005 10:59
Subject: [lowdosenaltrexone] Conference Report ..




Here are some facts from the conference ...

Linda Elsegood is making great progress in England with LDN Research Trust .. she is teamed with Dr Bob and a Neuro and set to run a trial next year .. 5 Neuros are now scripting .. their fund raising needs a boost. The MS society just refused them funds .. so they need help.

Linda had moved to SPMS was told to go home, there was nothing anyone could do .. she started LDN .. and the results were dramatic .. went back to her Neuro and was told .. they made mistake .. she didn't have SPMS .. but told her to keep on doing whatever she was doing.

When people arrive to her Neuro loaded with LDN info .. he now says they could try it but wont script it for them and then he mumbles something like "That Linda Elsegood!!" She is making them crazy but pushing forward.

Dr Mir from Germany ran a double blind randomized trial. 60 patients, 30 on LDN, 30 on placebo, 3mg LDN TAKEN AT 9AM (no typo) .. for 10 days .. Patients were PPMS or SPMS .. Did a pre and post neurological exam and question sheet .. Now this is interesting .. the test showed that LDN did not significantly help STATISTICALLY .. however .. when you look at it closer .. one third of the patients were 'responders' ie. they responded within about 7 days ... a doctor from Ireland backed him up there .. Dr P Crowley said that the LDN website is misleading because it implies everyone will respond but in his practice only about one third of people seem to respond .. Dr Gluck clarified .. It is a bonus if you are a responder ie get improvement .. the numbers on the website include those that don't progress .. that is the cream .. the improvements are the sprinkles .. Also interesting .. although .. the trial concluded no statistical change when Dr Mir asked Docs .. 82% of docs could SEE the improvements and 72% of patients could feel them .. so there was a change .. just ones that the parameters of the trial did not pick up .. Dr Gluck pointed out it was remarkable the effects and results of the 10 day trial because LDN was taken at 9AM .. he asked that next time Dr Mir give LDN at night .. it was given in the AM to avoid sleepless nights and 3mg to avoid .. spasticity .. Dr Mir showed that although LDN works it can still fail a clinical trial .. that was an eye opener .. there are no many different parameters .. that is why it convinced me me need a large scale double blind placebo for like 300 people for 12 months that no one can dispute .. but you know .. It could even fail that depending on the parameters .. It was just fascinating .. the test in Germany ended April 2005 I think.

Seyni Nafo .. wonderful young guy .. with an ambition to bring LDN to Mali has succeeded in speaking with the resident who has agreed to pay for a trial .. so he is setting it all up .. he has the protocol in place ready for the ethics committee .. 150 people ... 3 groups .. each groups of 50 .. HIV patients with good CD4 count get LDN< then a group with AIDS get the standards AIDS meds then a group with AIDS get the standard AIDS meds plus LDN .. NOW this is the trial we must monitor in my mind .. this is where it will all begin. By the end of June funding should be in place .. The trial will take 12 months .. If LDN can prove to make a statistical difference the world will wake up because the impact LDN can have on HIV and AIDS is mind blowing .. The trial costs 263000 US dollars .. if they produced LDN locally it would cost less than 10 US dollars per patient per year. I am deadly, deadly, deadly excited about Mali ...

Dr Girono from Italy .. is set to do a trial on 40 patients with PPMS .. 24 weeks at 3.75mg .. She is convinced that people with an autoimmune have low endorphins and that LDN will help .. My notes here are sketchy .. but she mentioned HIV, MS, RA and Crohn's and why she thinks LDN will help .. She may join minds with Dr Mir .. Now the dosage they pick seems to just come out of a hat .. the trials are ranging from 3mg to 3.75mg .. again interesting .. we don't know the magic number .. Dr B still says 4.5mg and pull back to 3mg if there are issues.

Dr Bob from Swansea .. what an honest guy! He must update his website to agree with Dr B .. he says LDN is definitely not addictive so no need to break. He thinks the possible side effects are much greater than listed on the LDN website ... and again he agreed with the theory that about one third of people are responders (remember they get the sprinkles but most people get the cream .. ie progression stops)

Dr Gluck had wonderful stories .. friends with cancer recovering .. growing up with "Bernie" .. pride in his family .. He has a dedicated desire to get the drug medically recognized because it is simply the right thing to do .. a very, very, nice guy. And his son Joel .. he was all over everything .. the event could not have been organized and run better .. I am sorry I left for the breakout activity .. I had a baby sitter and a birthday to celebrate and my brain was fried.

The European in me just doesn't excel there. The bells were a great idea. Every speaker got a 2 minute bell warning to finish .. that really kept the meeting on track. Noel wants to get a set .. and give me a 2 minute warning when my time at the PC is up .. I told him I will get right on that.

Larry Frieders ... told us the drug companies are not this big evil empire .. if it weren't for them we wouldn't have Naltrexone .. he said there is a lot of good in drug companies .. he made a convincing argument .. I still think they are wrong. The fact they are money driven makes them that way .. that is just the system. He explained it is a double edged sword .. if LDN gets approved then we will pay 120 dollars a month .. it just hit home to me how completely and utterly screwed up the entire system really is.

Terry from Irmats .. gave a great account of LDN .. Dr Bihari wants Irmats to use lactose filler because he wants consistence the whole way as he is seeking FDA approval .. that does not mean other fillers don't work .. Larry Frieders stated very clearly .. that all fillers they use work the same .. Her is my take .. If Dr B says lactose I am going lactose .. I know that it is an inert substance that couldn't possible make a difference but the same could be said for LDN itself .. Irmats do use Calcium Carbonate for England as requested .. and if people have a problem with LDN then they will change the filler just to see if that helps. Larry F wouldn't even go there! He thinks the filler is a non issue .. he is probably right.

Vicot Falah .. from Irmats .. believes that LDN will get FDA approval if we do it all consistently and use the right channels .. like consistent filler for example .. all the little things matter to him.

He thinks there is money to be made on LDN .. that it just hasn't been presented right yet to the right people ...

Dr Skip .. this guy is a trip!! He made us laugh out loud .. He said that KISS stands for Keep It Simple Skip .. He was like ... I make money on LDN .. I make it and I sell it .. I surveyed you guys and you guys say it works .. he showed us these graphs .. check out his website .. the results he declared to be crazy because they were staggering .. like 100% of people with PPMS improved or remained stable .. no wonder people laugh he suggested. He thinks LDN will never receive FDA approval and he was like so what .. Your doc won't prescribe LDN .. Get a new Doc .. as if to say ... It's not rocket science people .. just get a new doc!!

Fritz Bell .. spoke about his website .. the first to mention LDN and he and his crew were the pioneers in many ways .. the first handful of people on the drug. He shared some Lazarus stories and many people thanked him for telling them about LDN.

Art Mellor ..from Boston cure .. said there is no bad guy stopping LDN .. maybe there will be someday but when you tell people in the drug companies about LDN .. they are like .. LD what?? He said nobody knows we even exist!! I think he is right!!

Robert Lester .. gave a detailed account ideas from Yash .. which he has debated here .. even questioning the mechanisms by which LDN works .. endorphin production may not be the key ... It was interesting because he made perfect sense .. WE don't even know if it is endorphin protection that is the key mechanism .. it could be a great side effect from the real key .. I would like to review what was said there .. my brain was starting to fry at this point.

Norman Brown .. The love doctor!! He was a riot also. He thinks that Dr Bihari has been married to LDN for 20 years .. the perfect love story!! He also thinks that the LDN team wants to get into bed with the researchers but we have to patient because they want to get know us first ... like the dreaded foreplay conflict between man and woman ... His 16 year old daughter has a serious illness .. I didn't catch the name but she is in bed most of the time and in great pain so he wants to see if LDN can help her as her condition has some similarities with fibromyalgia ..

Joyce F .. Gave the most heartfelt talk that hit the room deeply because of how LDN has turned her life around .. Well done Joyce .. you were great .. thanks for sharing.

Susan Sedlock .. Provided powerful testimony how LDN helped her 87 year old Dad with cancer .. he is now 90 .. and promised God if he delivered her a miracle she would tell the world .. she bound the LDN website into a book for everyone present and wants a sponsor to help her bind more and spread the word further .. Thanks Susan.

Sammy Jo .. Gave a detailed analysis of her research and drug comparisons and said that when LDN halts progression it is possible to start gaining back what you lost for years through Physical therapy, diet, supplements and other things. She was living proof to that she went from 7 to 4 on that scale of disability ... she no longer uses a cane but has worked hard to et to where she is .. a very inspiring lady ..

I was the final speaker and this was my talk ... more or less .. I improvised a bit ..

I am delighted to be here today and would like to thank Dr Gluck and his son Joel for organizing this event. I hope that this will the first of many LDN conferences world wide. It is wonderful to be able to match our faces to our screen names, and I am thrilled to be joined by my husband Noel, because I can now prove to him that I don't really have imaginary friends .. you guys are real.


So what do I know about LDN? I certainly don't know as much as all of the doctors present here. I don't know the exact medical mechanics by any means, but I know enough to know that Dr Bihari has discovered something wonderful that has the potential to improve millions of lives. That is why I wrote a book about it. I want Dr Bihari to receive a Nobel Prize .. I am not kidding .. I really do.

To be honest, I needed to write the book .. for me more than anyone .. because it is difficult to rest easy when you know there is something so simple that people with disturbed immune systems need .... but don't know about, because the system works against getting a cheap drug into a clinical trial and medically recognized.

It is just so wrong .. it should be considered criminal .. but that is the system we have been trying to seduce for the last few years.


However .. I have absolutely no doubt that a trial will happen because the people involved in that pursuit are relentless and dedicated .. even obsessed, and for good reason ... because LDN has changed lives. I will share how it has changed my life.


Picture this .. A young mom living in NJ, she is Irish, lets make her a size 6 for a pleasant visual, she has three kids aged 3, 2 and 1 and a dashing husband who loves her very much and she him. Dashing husband has primary progressive MS and as the term implies he is progressing rapidly. The handsome couple are Noel and Mary.


Noel's Neurologist attends all of the MS conferences and assures us that he knows everything there is to know about MS and suggests taking Noel off the Avonex and onto Copaxone. But .. Mary befriends complete strangers on the internet who convince her that a doctor by the name of Dr Bihari in NYC can stop her husbands PPMS from progressing.





IMAGINE!! I don't know about you guys but I completely relate to people who want to beat me up when I first tell them about LDN .. I mean we are all too old to believe in Santa Claus . But .. I was desperate .. my back was against the wall so I phoned Dr Bihari and he spoke to me for about 45 minutes and assured me that LDN would stabilize my husband.


Mary tells Noel. Dashing husband naturally deems she is demented and insists she accept his rapid decline gracefully and make the most of everyday. Mary tells him all about her virtual friends in cyberspace and the success they have had with LDN. The duo approach the Neurologist who, after recommending intensive therapy for dismal damsel, writes a script for Noel for LDN convinced that it would not work.


He wrote the script on the basis that it would do him no harm and is therefore in line with the first guiding principle of medicine .. first do no harm. What a wonderful concept .. that should be our starting point ladies and gentlemen .. when you look at everything else we have .. I ask you does it even come close ????


Noel started LDN and stabilized as Dr Bihari predicted. Much time has passed, three years in September, and he remains stable despite massive stress at times .. Noel has not experienced any brand new symptom since September 2002, when he started taking LDN.


To be honest, part of me is still in shock at how well LDN is working for Noel. Noel uses a wheelchair when we are out and about so people may think that he is not a great poster child for LDN .. but in my mind Noel is the perfect poster child because the onslaught stopped in the nick of time whereby he can still live a full, functional, independent and very happy married life.


As a result of that knowledge that nobody can dispute .. I couldn't just forget about it. I told everyone I knew about it. I kicked off the LDN campaign in Ireland. I tried posting on MS Ireland but was constantly blocked .. and that annoyed me .. I still cannot post there actually .. but way back then I emailed each member of MS Ireland individually as their email was listed .. and I phoned each MS branch personally.


A friend of mine, Robert Joyce in Galway, the west of Ireland, then tried LDN. It arrested both his MS and sarcoidosis. He had the ultimate life changing experience and I so wish he was here today because he tells the most compelling story in such a laid back manner that he puts every Irish story teller to shame..

Robert's Neurololgist is now scripting his LDN in Ireland and the western health board .. ie .. the Government .. pays for it .. and a local pharmacist in Galway, Brendan Quinn distributes it. You see .. of course the Irish and European governments have interest .. they are the ones forking out for the expensive approved meds .. the health care in Ireland and England is different to here .. there the Government pays for it . .. you would think they would jump at the chance to investigate LDN .. but I have learned and written that it is not that straight forward. However, the LDN snowball did get bigger, Ireland joined forces with England, Scotland and Wales. Dr Bihari went on Irish radio and really got the momentum going on the other side of the Atlantic. I presented the Irish government with a trial proposal on behalf of Dr Bihari and they still have it.


Meanwhile I have contacted many celebrities and other governments and tried to entice them to investigate but to no avail. So what did I do? I wrote a book about it because I needed to write it down because it is a story that has to get out there and lets face it .. it was great therapy .. how could anyone keep a story like that to themselves ... It is just too , too big.


I believe that my book .. Up the Creek with a Paddle .. subtitle Beat MS and Many Autoimmune Disorders will help take the LDN movement forward, and I predict that it is the first book of many on the topic. I know that. It is funny how things happen in life.

The book is actually a collection of emails to my kids kindergarten teacher. I met a lady named Rosemary Konde in September 2003 and I instantly loved conversing with her. She is about 55 and a lot of fun. But, I accidentally included her in an email to a group of LDN contacts a couple of years ago and because of that email she told me that her 26 year old daughter at the time had an autoimmune illness, Samters, and she was hopeful that LDN could help her.


Her daughter met Dr Bihari and started LDN and thank God, it does seem to be helping her. How crazy is that?? If you believe in coincidence it was a classic.


I am glad that our connection grew because it turned out that the only way I could get my story onto paper was by telling Rosemary the whole thing from the very beginning .. from the first day I met Noel, .. in a series of emails. When I was done .. getting the story off my chest .. ( the teachers in Bergen county are very patient .. it took about 6 weeks ) .. I compiled the emails into a manuscript and the first publishing house that received it, loved it and just ran with it ..


That is why I dedicated the book to Rosemary and that is why when people read it, they tell me that it is as if I am just sitting there telling them a story .. because that is what I did. It is the best story ever .. you see Santa Claus himself even comes second . The book is an easy read and I am shameless in plugging in it .. I just want the world to hear it .. the whole story .. I hide nothing .. .. and I want Pierce Brosnan to play Noel in the movie by the way.

I bought 50 books and intend to send one to a list of key targets in the hope that one of them will shine the spotlight on it. I have not given up on Oprah by any means. This is the bottom line .. My husband has not experienced anything brand new symptom despite having PPMS because he started taking LDN in September 2002. There is nothing better .. there is nothing better than the release from the onslaught of a progressive degenerative illness. .


I feel for everyone in our boat pre LDN .. I do .. I can't help it .. and I want them to change their future like we did .. and believe me I have thought about the what if Noel found LDN earlier .. lets not go there


We need a large scale clinical trial of MS and LDN to blow the socks off the status quo .. such a trial would shed much light on the mechanics of the immune system and hopefully redirect research to help the children of today, like my own . who are at risk of developing a disturbed immune system illness tomorrow. The neurologist has assured me I have nothing to worry about .. but I am worried ..


Beyond all else .. my children are my incentive . so if I do have the gift of the gab then it is my privilege to use it to get the LDN word out to all those who need it.

To conclude I will end with a relevant quote


Many persons have a wrong idea of what constitutes true happiness. It is not attained through self-gratification but through fidelity to a worthy purpose.
Helen Keller US blind & deaf educator ( 1880 - 1968 )

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