Saturday, 30 May 2009

First European Low Dose Naltrexone (LDN) Conference, Glasgow, Scotland, UK, February 2009

Below are 4 summary articles I posted on notes I took a the EU LDN Conference.
I've also included the raw notes I took for the whole conference. These are very rough but give a flavour of all of the sessions there and the information therein.

Viewing the conference videos is the best way to get the information from the conference -

NOTE - Below are raw notes, short, and uncorrected for spelling or sense. They are offered as is.

First  European Conference on LDN

Glasgow 25th April 2009

Glasgow University


Linda E..good LDN Research Trust

MS 20 yrs, LDN 5.5 yrs - apears totally symptom free today.

V limited mobility, cognitive issues in communicating, severe muscular problems.

Dec 2003 started LDN

Dramatic improvement in 3 weeks, fatgue, sight, bladder improved.

Set-up LDN R C as a charity, voluntary work, running costs paid,

22K raised towards clinical trial

Aim - Get LDN on NHS for everyone.

4200+ registered 

3000 in UK

90% have MS

Crohn's ME Parkinson's, Cancer and other conditions

US and other countries welcome to register

Current condition - Getting an infection/virus brings up MS symptoms (Some people say they don't get inf/vir on LDN).

Dr Bob Lawrence - introduced LDN to UK

Dr Tom Gillholly - aiming for trial in UK

LDN Research - Dr Tom Gilhooly, Essential Health Clinic, Glasgow

Published research and science research needed for GPs/ NHS

1/50th standard dose of 30 yr old drug with good safety record

Summary of research

Crohns, Human Study  - Penn State

TG 9/10 towards funding for first MS trial in UK

LDN - Patent protecton long gone - no pharma studies then.

Uni - Charity funding required

Hopefully government science funding in UK

Publication is required (Hence clinical use in clinic not used)

Institutional resistance - Charities are wary of LDN

Accredited Funding needed - only 1 MS one, not keen on LDN

3/4 mg is most research - not ideal - need to educate researchers

Short duration - 2/4 years needed for LDN, cancer for 5 - therefore more expensive, so need shorte cheaper studies with demonstrable 

Cancer , MS- Ian Zagon - 28 yrs, multiple studies in animals (244 publications)

1981 - nalexone and cancer in mice

Dr Bihari's became interested, lots of work but unpublished. Work on HIV was refused puiblication

IZ - Opiate growth factor increased by LDN

Seems to naturally inhibits tumour growth in animals

Experimental Allergic Encephalomyelitis - induced in animals an treated wtih LDN

MS Society of America has funded research into this which will be published soon

Sep 2008 Montreal World Congress MS - presented this there

High dose naltrexone worsens EAE and makes humans feel worse

Important to take once per day - short duration 

Human Studies

FM - Published last week.

1/4 million FM in UK alone

Stanford, 10 patient study

EHC, using LDN with FM for 6 months, much better than pervious treatment (80% improvement vs 20 with other approaches, nutrition etc)

Dosage very dependant. Study used 4.5 for all, TG - mostly 1 - 2 some people have trouble taking more than 1.

TG's proposed study 120 - largest ever.

Stanford 2010

Crohn's - most impressive result.

Prof Kill Smith, Penn State U

17 patients, 12 wk pilot - 4.5 mg (High) LDN

Close exam of bowel - 67% remission

89% response

TG - 3 patients , 2 with servere crohn's - both remission with 1mg quite quickly.

1 NHS patients with blody d and blood transfusion

remission for over a year (Stopped LDN as didn't like drugs but maintained remission)

IBS - Kariv, Tel Aviz  - 47 @ 0.5mg 76% improvement Reduction in pain free days

600 patients ouble blind randmoised

0..5 mg (Called PTI 901)

2 momnths mprovement, not after 3

Seems like too low a dose, so IBS not proven really.

Seifrabei et al AJAS 2008

Haematological  cancers

5 mth with 3mg

Sig imp in qualuty of life at 1 3 and 5 months follow up


Gironi et al Milan 2008

Clinical exp LDN is best MS treatment

40 primary progressive MS (Worst case) - 6 months

LDN safe - only 1 patient progressed

Significante reduction in spasticity

No major adverse effects in any study

Cree et al - Uni Cal SF

80 pts 8 week RCT 4.5 mg

MSQLI - sig imp

Pain, mental health, cognition


Numerous publications

Diverse medical conditions

Seems to be useful for many conditions involving the immune system


Dickson Chemist 

Home Delivery Pharmacy Services

J Stephen Dickson MRPharmS

0141 647 8032

Advice came from Pharamcy Prouction Unit at the Western

5 medic tyoes

Herbal - low reg

GSL - supermarket

P - pharmarcy

POM - presc only

CD - morpheine etc

MHRA regulated

MHRA license 

Nalorex (Naltrexone) - Only for treatment of addictiion, 25mg - 200mg

Therefore, with this use - company is responsible for any ill effects, not Dr or Pharmacist

So LDN is


Unlicensed indication an formulation

Responsibility is 50/50 Dr / Pharma

NHS will generally not pay (See later)

Legally, any pharmacy can prepare LDN ue to legislation which allows any sensible formulation asked for by Dr.

Sugar free, Vit C preservative, flavouring

Expiration - legally mandated but vague, therefore 28 days from date on bottle

Keep in fridge too - minimise bactereological contamination

Options - vial + syringe, filling tube/adaptor

Unit Dose Vial (UV) - one bottle pre dose - easier for ple with poor dexterity

3mg and 4.5mg caps

'Specials' regulations MHRA importing isssues etc.

v. expensive

people buying from US illegally, no Dr involved

labelled as 'vitamins' - illegal

MHRA audited Dickson - non GMP compliance was issue, warning issues and no longer imported from IRMAT.

No guidance anywhere though.

May 2009 - 2 suppliers of 30K caps per time, same price as US now

Invested 60K+ in services

now 100+ being invested

Donating 40p per prescription to fund research from May 2009

 > 200 UK Drs will prescribe LDN (30K GPs in UK)

Time of day to take doesn't matter

Naltrexone will pass on the NFS for payment

Burt -

Alpha-lipoics accide 600mg 2/week + 4.5mg LDN per day for end stage cancer patients - remission

Pan can meta liver 2003

78 mths later alive and no tumour visible

Lupus an Arthritis

v. goo results

Dermatomyositis 20 % de in 1st year

Skin problems barely able to work, severe pain

ALAN on other drugs, pain down to 1/5th, 5th of muscle issues - 3 mths later

12 mths out - normal

200 ;upus patients - great results, test scale figures down to virtually 0 or 0 in 6 months

Alpha Lipoic acid - a prescription drug in much of EU (In Germant particularly)

No prescription required in Germany (Anecdotal - Dusseldorf, oriental man)

ALA affects metabolism, young people have plenty, older people don't.

Need B Vit complex to deal with B Vit depeltion

PM -

Saving Lives - One person at a time - Joseph Wouk

google LDN

LDN Research Trust - most recommened web site

1 yr LDN - vast improvement. normal

Yahoo group for LDN

6000+ members

anecdotal = 'results not a part of an approved double-blind study" != "old wives tale"

patientslikeme forum

 - backe bt pharma

103- mill USD needed for FDA/MHRA appoval

re-patent propsal - pragmatic solution, work within current system so drygs can be re-approved for new uses.

Sent to for Obamha admin.

attempt to classify as 'Orphan drug' - Dr Gluck, Bihari and Wouk - website for petition to number 10 for UK trials - 1801 sigs so far.

The Prompise of Low Dose Naltrexone Therapy : Potential Benefits...

Elaine A. Moore and Samantha Wilkinson

Reverse SEO? low in results for varous condisions other than LDN itself.

gets same positon in google as 1/20 of hits site.

Need more links to site from many more web sites - SEO

naprotechnology for fertitility

LN helps fertitility

LDN used in Ireland since 2004

endorphine deficiency a problem with PMS and mis-carriage and fertility

Study was done on PSM with 25mg a day

in Ireland 170 drugs which are prescribed outside of licensing, so what's different about ldn?

Peer convern amongst doctors?

nb 75% of the infliximab patients failed in Penn study who got 66% remission

'Yasmin survivors forum' - google this for LDN an mood/PMS

'Up the Creek wth a Pddle' - Maey Anne Boyle Bradley

edometreiosis is 1/2 level of normal fertility on endorphions

polycystic disease too related to lowendorphon levels

persistent brown menstrual bleeding


anxiety in ecessiss

Vit 3 deficiency a problem with fertility as is foo intolerence

LDN less effective with sterioud use

Menopause a big problem with PMS beforehand an low endorphons

Future for LDN - Tom G

Gps can prescribe off-license - consultants can't - hence concentrate on GPs

Mechanism - Reuction ion peroxynitrites - ONOOs - damage cell membranes, DNA an denzy,es

Measure nitrotyrosine - nitrated amino acid

Damage enzymes which produce energy from nutrition - hence fatigue of many auto immue dieases 

Measurable via LP

Decreases as immune system becomes reduced and symptoms better

First test ever in the world - not validated yet so can't be charged as yet.

> 10 nmol/l bad

Pre SPMS 8 years = 183 nmol/l

1mg 130

2mg 108

3mg 5








Cycluc neutropenia








Dr Ian Zagon coming 2010 conf

Pharmacist - Skip

Vitamin D and Omega 3 are key - don't be defieicnt

zinc too

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