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Sunday 31 May 2009
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 -
http://www.wearecrohns.org/bobthomson70/journals/2798 http://www.wearecrohns.org/bobthomson70/journals/2797 http://www.wearecrohns.org/bobthomson70/journals/2795 http://www.wearecrohns.org/bobthomson70/journals/2799
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
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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