Sufferer joins in battle for trials of 'wonder drug'
A LLANELLI man is spearheading a fight for trials to be carried out on a "wonder drug" which could help treat people with illnesses ranging from Aids to cancer.
Multiple sclerosis sufferer Andrew Barnett, of Llangennech, and his partner, Jayne Crocker, who has ulcerative colitis, both take a drug called Naltrexone.
-

The pair say the generic drug has been used with remarkable success to treat their conditions, and are now calling on the Government to help make it available to all.
However, the Assembly says it will only consider medicines appropriately licensed by the Medicines and Healthcare Products Regulatory Agency.
The drug went out of patent in 1986. It was introduced into the UK by Swansea-based physician Bob Lawrence in 2000.
The drug works by blocking endorphin receptors for a limited period of time, which then boosts them five-fold.
This stimulates the immune system to produce cells that repair the body.
Only about 200 doctors in the country currently prescribe the drug — many more are reluctant to do so, because it has not yet been approved by health chiefs.
Mr Barnett described how last year he reached a point where he could only support his weight on crutches. The 49-year-old was crawling out of the front door to get to his car, dragging his legs behind him.
But after taking the drug, there was a remarkable improvement.
Mr Barnett said: "Within four days of taking Low Dose Naltrexone (LDN), I could walk to the car with two walking sticks, and even walked down a friend's country path to visit them.
"The downward spiral ended there, in fact I seem to be improving as time goes by."
His partner Jayne, from Milford Haven, decided to use LDN for ulcerative colitis, which she has had for 25 years.
"Within the first month I was no longer in pain," she said.
"It's not a miracle drug, but it does work for a lot of people."
They say as well as being effective, the drug is cheap, costing less than £1 a day, and could save the NHS vast sums of money.
The couple have created a petition to take their fight to 10 Downing Street, and have already gathered around 3,000 signatures.
Mr Barnett, who has secondary progressive MS, said: "We urge the Government to fund a trial of LDN on the NHS.
"Because of lack of interest by drug companies, without political intervention, we will probably never see this drug trialled."
An Assembly spokesman said the National Institute for Health and Clinical Excellence had looked at the drug.
He continued: "Since there is no licensed product available for low dose administration in the UK it can only be obtained under a special manufacturing licence.
"Products of this nature are obtained on the full clinical responsibility of the prescriber, and any liability for any harmful effects caused rests with them."
He said researchers with an interest in Low Dose Naltrexone could apply for funding for specific research.
*To find out more about LDN and the petition, visit www.ldnnow.co.uk







33 Comments
View all
by A Barnett, Llanelli
Friday, August 07 2009, 11:09PM
“For a list of doctors who prescribe, visit ldnnow.com for an email address where you can get this information”
by DR P M WILLIAMS, SWANSEA
Wednesday, July 29 2009, 7:02PM
“IS THERE A LIST OF DOCTORS WHO CAN PRESCRIBE LDN?”
by Lucca, Windsor
Monday, July 27 2009, 10:33PM
“Too often, people come across this effective drug in seeking out a "last resort" - well after the point that they should have been taking LDN to prevent disease progression. My hope is that LDN will someday be the first line of defense for the majority of immune-mediated disorders. As an inexpensive drug with few minor side effects, it does not compare to the harsh, costly immunosuppresants & biologics that are the current physician protocol. I am taking LDN for Lupus and Sjogrens, among other overlapping auto-immune conditions, and have seen measurable symptomatic improvement that the plaquenil, steroids, immunomodulators had been unable to achieve. I was nearly incapacitated by those other drugs' side effects. And now, thanks to LDN, I get daily glimpses of a full functioning life and getting myself back.”
by Vicki Finlayson, Auburn, California
Friday, July 24 2009, 5:24AM
“I was diagnosed 2 weeks before my 40th birthday. I'll never forget how terrified I was not knowing what was going to happen. My dr prescribed Avonex, which I did for 7 yeras, then Copaxone, then rebif. I was on Morphine, Oxycottin, Norco, Tysabri, steroid infusions and a bunch of other drugs. Life was miserable and all my dr.'s could tell me was that it wasn't going to get any better. I kept asking if this was it they assured me it was. i was on disability, depressed and angry because my government had failed me. I found LDN and things changed. I'm off all the shots, off disability and back to work, and all because of a cheap, non evasive drug that works. I advocate heavy in California, did a 56 mile walk to our State capital hoping to talk to Governor Schwarzenegger, I did meet with 2 of his advisors, they didn't care about me, which was sad. The same with the Mayor of Sacramento and a Congressman of California. The only thing they care about is money and how profitable we are if we are sick. We need to stop this madness before they kill us all. The LDN community is growing and one day they will listen..............”
by JB, Swansea
Thursday, July 23 2009, 4:19PM
“Anyone based in London or who knows anyone in London please encourage them to go to Trafalgar square tomorrow at 11 am where Brian Lonsdale will be promoting the petition on the fourth Plinth. He will be distributing Flyers to explain how to sign the petition... Good Luck Brian!!!”
by M.Hurse, United Kingdom
Thursday, July 23 2009, 11:46AM
“The important thing is LDN only does good and not harm.I have M.S. and have been taking LDN for approx 2 yrs with no side effects.”
by Silvia, England
Wednesday, July 22 2009, 11:43PM
“There is no risk involved with LDN, so "testing on human beings" sounds as if there was a doubt about its safety. The people who are using LDN don't doubt its safety nor do they think they are doing "human trials". LDN has been used for nearly 30 years, safely and very successfully. The bad thing is the fact that this cheap generic drug is not being offered as a first line of treatment for all autoimmune diseases. It's not being offered at all. Patients have to suggest it as a treatment. The suggestion should come from the treating doctor. That's why we need the government to act. That's why everybody should sign the petition. Not only could the NHS save lives, it could also save millions (or even billions)”
by Andrew Barnett, Llanelli
Wednesday, July 22 2009, 11:52AM
“Thankyou everybody for all your comments. Low Dose Naltrexone has been used safely at high doses, around 10 times the dose I use, for about 30 years in treating opiate addiction. It has also been shown safe for pregnant women at this high dose, so the doctors who will happily prescribe Naltrexone at high dose without worrying about safety, then come across with concerns for safety at low doses. There are no drugs which are safe at high dose that suddenly become unsafe at low dose, so this has always baffled me. The resistance to LDN is purely because it is what is called a generic drug, which means it has become unprofitable. The crime here, is that the NHS allows profitability to influence decisions about peoples health, even if they do it by the back door. I have spoken to doctors and nurses about this, and they all agree with me that LDN needs to be investigated properly, including my neurologist who is very disappointed this drug has not received the attention it deserves. Which is why we have come to our position, only the government can solve this problem with generic drugs, and start with LDN because it tackles the most deadly diseases we face. Just an extra, LDN will also help with fertility problems, eliminating the need for IVF ¿ google ¿fertilitycare¿ for information. Again, thankyou everyone for your support.”
by Heather, Mwmbwls
Wednesday, July 22 2009, 8:56AM
“We can test these drugs effectively; we can test them on other those who have committed dreadful crimes, those who have taken lives.
Test on Human Beings.”
by Bill Roberts, Sylacauga, Alabama, USA
Wednesday, July 22 2009, 1:29AM
“My name is William (Bill) Roberts. I live in the United States. I am 59 years old, was diagnosed with RRMS in 1998, and upgraded to Secondary Progressive in 2002. My chief symptoms are (were) extreme mixed sleep apnea, COPD, inability to walk, total deafness in my left ear, and inability to concentrate for any period of time. I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan, plasma exchange, as well as many, many sessions of IV steroids (Solumedrol). As of June, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise. I had also ballooned in weight to around 300 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on Rebif, I should begin taking a week of IV steroids every three months, regardless of my condition. I did not feel that the steroids were offering enough positive results any longer, and I did not want to take any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed.
My new neurologist reran all of the standard MS tests, including MRIs. After studying the results, she suggested I stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she would prescribe a drug LDN (Low Dose Naltrexone), for me. I had read a great deal about it and talked to a number of MS sufferers who had improved with the use of LDN, a medication that is FDA approved as a treatment for Heroin addiction and alcoholism. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it.
I began, around the first of July, 2005, with 1.5 Mg per day for the first week, then increased to 3.0 Mg from then, on. I also stopped taking the Rebif at that time. While I did not notice any improvement for the first three months, I also had NO flares either. Then, I began to notice that my breathing was improving- I could take time off from the oxygen for extended periods of time; the strength in my legs and arms was improving- I began to be able to take short walks with a walker, then longer walks, then changed to a cane, then actually walked to the bathroom without assistance! My sleep began to improve, as well. Improvement continued and actually increased, so that when I went for my six month check-up with my neurologist, I did not even take my cane, and I blew away my neurologist by acing all the tests. I am now driving again after four years, walking totally without assistance, and have dropped my weight down to 232 pounds. I hope to get back to my normal weight of 195 by year's end. In April of 2006, after my wife was diagnosed as a borderline diabetic, I walked in a ¿Walk For Diabetes.¿ I walked just over 21/2 miles, with no assistance, beginning with the starting group and finishing with them, something else I never thought I would be able to do again. I spent the next summer building a fence in our back yard and re-landscaping it.
LDN is NOT a cure for MS. I still have it, and I still have issues with it that I have to deal with everyday, but I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to prescribe LDN for me. It is allowing me to do things I never thought I would be able to do again, and if it were to become an approved treatment for MS it could not only possibly do the same for others that it has done for me, but it could also possibly free up millions of dollars that could be used to find the cause of diseases such as MS. Finding the cause for a disease brings researchers MUCH closer to finding a true cure.
Pharmaceutical companies need to be able to make a profit off of the drugs they develop through their research. The cost of such researc”