First European Conference on LDN
Glasgow 25th April 2009
Glasgow University
Intro
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Dr Bihari's became interested, lots of work but unpublished.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
MS
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
Summary
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
POM
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
healthyandessential.com
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 healthreform.gov for Obamha admin.
attempt to classify as 'Orphan drug' - Dr Gluck, Bihari and Wouk
LDNnow.co.uk - 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
www.googleldn.com
Reverse SEO? lowdosenaltrexone.org 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
PCOD
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
MS
CFS/ME?FM
Psoriasis
CD
alopecia
Endometriosis
Ultricaria
Cycluc neutropenia
SLE
Cancer
Parkinson's
JIV
ALS
etc
etc
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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