Conference Report ..

[Guest guest]

Here are some facts from the conference ...

Eslegood 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.

had moved to SSPM 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 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 president 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 implact 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 .. 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'tr

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 mantion 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!!

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.

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 .

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 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 .

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 .. 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.

tells Noel. Dashing husband naturally deems she is demented and

insists she accept his rapid decline gracefully and make the most of

everyday. 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, 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..

'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, n 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)