FW: [LDNforFibro] LDN Conference in Glasgow

[Guest guest]

FYI – Judy, thanks for posting to the fibro group.

Best,

Jayne Crocker

www.LDNNow.com

Important! Please sign our LDN petition to the European

Parliament by clicking here

tel: +44 (0) 7877 492 669

Dr Steele MBE, talking about LDN

LDNNow, a patient and friend led organisation (so not a charity)

with no funding and no affiliation to any company or organisation, but rather a

group of concerned individuals focussed on improving the health of those who

suffer from the many diseases and conditions that LDN treats.

From: LDNforFibro

[mailto:LDNforFibro ] On Behalf Of Judy Harford

Sent: 24 April 2010 18:03

LDNforFibro; Fibromyalgia Support Group; FibroRUs

Subject: [LDNforFibro] LDN Conference in Glasgow

Today was the

European LDN Conference in Glasgow, Ireland. Dr Jarred Younger of Stanford

University was unable to attend because of the airline's shutdown, but he

was plugged in with Skype. Here are the notes that LDNnow reported on Twitter

about his speech on Fibromyalgia, CFS/ME and Low Dose Naltrexone:

Dr. Jarred

Younger's research on Low dose Naltrexone for CFS/ME being unveiled at 2 pm exclusively.

Jarred

Younger PhD, McCue BS, Mackey, MD, PhD-Fibromyalgia and Low Dose

Naltrexone.

Preliminary

results on Low dose Naltrexone for FM funded by Jim and Connie Binns and AFSA

(American Fibromyalgia Syndrome Association).

5% US women, 9 women to 1 man

diagnosed with fibromyalgia. Muscular pain, fatigue and insomnia are main

symptoms as are joint pain and headaches. 18 tender points, 11 are painful.

Diagnosis difficult. Controversial condition.

Microglia cells appear to play a

role in Fibromyalgia. Produce TNF, IL-6, Nitric Oxide and others. When ill

with flu, microglia cells are what produces ill feeling, tiredness and need to

go to bed - useful for illness. In fibromyalgia, microglia perform this role

when no illness/hypersensitive to normal situations in body. No existing drug

modulates microglia, but compounds exist which can do this. NIH research on

this. See Watkins research on microglia and low dose naltrexone. Theory -

low dose naltrexone binds to hyper-sensitive receptors on microglia.

New study - 30 women, mean age 43,

no opiods, at least 6/10 on pain scale. 70% of fibromyalgia patients had

improvement and 50% much or very much improved on low dose naltrexone (50%-75%

pain reduced). 30% who had no improvement - ties in with 1st study, so

consistent. 15% reduction in pain from placebo, additional 15% reduction due to

low dose naltrexone. It seems that improvement persists to some extent even

after low dose naltrexone withdrawn. Vivid dreams side-effect - 20% on placebo,

47% on LDN. Seldom disturbing dreams and tends to fade. 1 person dropped out of

study (Judy- this would be Tamra because of severe problems with a fungus

infection) and 1 person reduced dose from 4.5 to 3mg and did well on that.

Next steps - Further analyses,

long-term safety, mechanistic proof, optimization. Researchers looking at

levo-naltrexone and dextro-naltrexone (Left and Right parts of molecule) to

optimize. Des from Fibromyalgia UK 'Very positive' on the new study results.

Dr Jarred Younger - low dose

naltrexone and fibromyalgia fatigue data mirrored the fatigue results very

closely. Dosage was given 1 hour before retiring. 1 or 2 persons switched to

during day dosing due to sleep problems.

Process of licensing levo and dextro

naltrexone will take 'years'.

Personal report by a woman (Maija)

with CFS/ME:

People with CFS/ME

often have many other infections and diseases including auto-immune disease.

Adrenal and other endocrine issues are also common. She first heard of LDN in

2004. Received prescription in 2007 from dr. who had never heard of LDN.

Improvement in CFS/ME fatigue within 24 hours. Much improved in first week,

fever reduced. Maija's Dr now treats many of his patients with LDN. Improvements

reported from 50-70% improvement.

Could only walk '50 m', now '3Km'.

Pain killers every day, now 1 every 2 weeks. LDN most effective for CFS/ME, but

other drugs can help too. " Don't believe people who say there are no

treatments for CFS/ME. " Maija's book on Amazon - http://bit.ly/coFtLV

Next

up - Fowler Chronic Fatigue Syndrome patient.

on low dose naltrexone - Now active, back to work as normal and much, much

improved. Less tired.

After 12 years of CFS/ME,

now on 1.75mg low dose naltrexone recommending anyone try it, 'shouting

from the rooftops'.

Negatives

- Memory still less effective and still more stressed than before.

Dr

Tom Gilhooly believes CCSVI may feed into fibromyalgia and CFS/MS too. Chronic Cerebrospinal Venous Insufficiency - newly

identified venous condition. International Union of Phlebology 2009. IUoP voted

that #CCSVI was new condition. For more info on CCSVI speech, you can go to

twitter / LDNNow.

Judy H

To better health through knowledge

Started taking LDN (Low Dose Naltrexone) on 1/21/2009 for Fibromyalgia,

Hypothyroid, PCOS and Restless Legs

LDNforFibro/