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Milford Haven woman petitions government for LDN trials

1:30pm Sunday 5th July 2009

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A Milford Haven woman and her partner are spearheading a campaign to trial a drug that has made a huge difference to both of their lives.

Jayne Crocker and her partner Andrew Barnett are both prescribed low dose naltrexone (LDN). They say the generic drug has been used to successfully treat cancer, autoimmune systems and central nervous system disorders.

In 1986 the drug went out of patent. It was introduced into the UK by Dr Bob Lawrence, a Swansea-based physician, in 2000. About 200 doctors in the UK currently prescribe the drug, many more are reluctant to do so because it has not yet been approved by the FDA.

The couple has launched a petition to urge the Government to fund comprehensive trials of the drug so that doctors are aware of it and are confident in prescribing it to patients.

At present, a handful of small-scale studies exist, but there has never been an extensive trial of LDN.

Preseli Pembrokeshire MP Stephen Crabb helped them word the petition, which is currently ranked in the top 50 of all petitions submitted to the number ten Downing Street website and has already attracted nearly 3,000 signatures.

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.

Andrew has secondary progressive MS, and began to see huge changes after taking it. He has now been on LDN for ten months and is prescribed it by Dr Lawrence, as his own GP was reluctant to prescribe it.

“Before LDN I was crawling to my car and giving myself injections every week,” he said. “Within two weeks of first taking it I was up on my feet again.”

After seeing the dramatic improvement in Andy’s condition, Jayne decided she would use LDN for ulcerative colitis, which she has had for 25 years.

“Within the first month I was no longer in pain,” she said.

After taking LDN for three months it also helped her arthritis.

“It’s not a wonder or a miracle drug but it does work for a lot of people,” Jayne added.

The couple believes that the drug will never be trialled by drug companies as it is cheaply available. It costs between 50p and £1 a day, and would not make the pharmaceutical companies enough profits, they say.

To find out more about LDN and the petition, visit www.ldnnow.

co.uk.

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Your Say YourPembrokeshire

bwmbagus, Llanelli says...
3:22pm Sun 5 Jul 09

I hope this really gets out there. Not only is it a life saver for some of the sickest people, it is a huge money saver too as so many generic drugs would be if somebody actually started looking at what new uses they could all have. I mean, why spend tens of thousands of pounds a year on drugs if a cheap one will do the job, it really makes a joke out of health care!

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josephwouk, Tel Aviv says...
4:41pm Sun 5 Jul 09

Jayne and Andrew are two of the finest people it has been my pleasure to meet. Their devotion to the cause of bringing LDN to the patients suffering in the UK and around the world from immune system related disorders helps maintain my faith in the decency and caring nature of most people in the world.

That the petition to 10 Downing is even necessary speaks volumes about the suborned medical system in the UK and the US.

This drug not only works better than the other drugs routinely prescribed for these conditions, compared to them it costs next to nothing.

But of course, that's the problem, even though it should be a central reason why our fiscally challenged governments should have long ago tested it.

Since LDN is a generic drug, the current patent system prevents investors from being able to recover the millions required to run the tests. For this reason, the Pharmaceutical industry is uninterested in LDN and actively combats any and all attempts to get it out to the people who need it.

Each person who uses LDN represents a loss of thousands of dollars per month for the sellers of the alternative treatments.

While the petition is the correct thing to be doing right now, the long term solution lies in changing the patent law to allow for re-patenting of prescription drugs when new and important uses are discovered.

As long as we depend on a "for profit" system of medicine, there is no other way to insure that the tragedy that the LDN situation represents won't be repeated over and over as more and more drugs become generic.

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Linda Elsegood, Norwich says...
4:47pm Sun 5 Jul 09

I'm an MS sufferer and have been taking LDN for over 5 years with great success; in short it has given me my life back! I felt so strongly about LDN that I founded a registered charity the LDN Research Trust. Anyone wanting to try LDN can download an LDN fact sheet from www.ldnresearchtrust
.org to take to their own GP who may or may not prescribe it on the NHS. Failing that call me on 0844 41 45 295 and I will point you in the right direction of a private GP in your area.

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Tom5, says...
5:01pm Sun 5 Jul 09

Thank you, Jayne & Andrew for launching this Petitition. It fits very well with the recommendations made by the House of Commons Health Committee which was published on 22 March 2005. It was entitled "The Influence of The Pharmaceutical Industry"
(Ref http://www.parliamen
t.the-stationery-off
ice.com/pa/cm200405/
cmselect/cmhealth/42
/42.pdf )

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bobthomson70, Glasgow says...
5:21pm Sun 5 Jul 09

Well done to Jayne and Andrew for their dedication to this important issue.

I have been using LDN for Crohn's Disease for 3 months now and I can already say it has me feeling a lot better than any other treatment I have taken in the 2 years since I was diagnosed.

The more patients ask doctor's about LDN, the more chance it will be made freely available on the NHS as it should be.

http://ldnothenhs.bl
ogspot.com

twitter.com/LD_Naltr
exone

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Garnet, Texas, USA says...
6:20pm Sun 5 Jul 09

There is an epidemic of auto immune disorders affecting people and our pets, not the least of which are HIV, Cancer and Multiple Scelrosis.

LDN has been reported by hundreds of thousands of patients to improve symptoms and quality of life, without serious side effects and costing only a fraction of patented treatments.
Clearly this drug can save lives and health care budgets. It's obvious yet very little interest in shown by the medical community and the pharmaceutical industry, in fact quite the opposite is occurring.

There is an active disinformation process occurring due to the fact that there is not a large profit potential. As well as the potential for lost profits on other patented treatments that are not needed when LDN is used.

Is this they way we want our medical decisions made? Based on how much profit is made on our illness?

Kudos to Jayne and Andrew for their courage and selfless devotion to this very worthy petition and effort to bring LDN to the attention of the world.

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DESTINYELLEN, Porterville/Medford says...
7:02pm Sun 5 Jul 09

This is incredibly important work not only for England but the world. Thank you Jayne and Andrew. LDN saves lives and restores hope for a healthier future.

May 14, 2004, Bentley Lyon (my dad) almost lost his life and was paralyzed on his left side due to a massive hemorrhagic stroke during Deep Brain Stimulation surgery for Parkinson’s Disease (PD).

October 2004 he started LDN. We felt that it was worth trying since the side effects were minimal and the cost was less than a $1.00 a day. Within days, the muscle tension that was affecting his breathing and causing tremendous stiffness and pain, started to dissipate and his breathing returned to normal. Within a year he was able to lower his PD meds by more than 60%.

LDN can save millions of people from needless suffering and in the process help save our healthcare systems from financial failure.

Wishing you tremendous success. Destiny, Liz and Bentley

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itsmelindad, Canton says...
7:08pm Sun 5 Jul 09

LDN has changed my life! If it would get studied, many people would not only feel better, our health system would not be so burdened.

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joybran66, Swansea says...
9:27pm Sun 5 Jul 09

I have witnessed hundreds of people getting theyre life back on this drug and know of many more. Why it isn't being used by the NHS is a mystery to me. Please everyone sign the petition and lets move this forward. Not everyone can afford to pay for this drug. There shouldn't be a price on life..

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bevinsf, San Francisco & London UK says...
3:27am Mon 6 Jul 09

Thank you Jayne and Andrew for putting the word out. Many of us think about it but just dont get around to it!
My husband has MS and has take nothing but LDN for over four years. His MS has not progression and he remains stable. It`s affordable and safe. He plans on taking LDN forever regardless if a "cure" is found. He hasnt even had a cold for years!

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bevinsf, San Francisco & London UK says...
3:27am Mon 6 Jul 09

Thank you Jayne and Andrew for putting the word out. Many of us think about it but just dont get around to it!
My husband has MS and has take nothing but LDN for over four years. His MS has not progression and he remains stable. It`s affordable and safe. He plans on taking LDN forever regardless if a "cure" is found. He hasnt even had a cold for years!

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dudley_delany, VIrginia Beach says...
11:22am Mon 6 Jul 09

Low Dose Naltrexone (LDN) has helped many people with HIV/AIDS, autoimmune diseases, neurodegenerative disorders, and certain types of cancer--all with minimal side effects and at a price anyone can afford. If that's not a miracle drug, I don't know what is! To learn more about LDN, visit http://tinyurl.com/i
ntro-to-ldn

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Margaret87, France says...
2:49pm Mon 6 Jul 09

I’m 67. I’ve been on ldn since April this year. It’s not ldn that fights diseases - ldn "repairs" the immune system and it's that that fights the diseases.

I'd hardly know I have rheumatoid arthritis anymore – no pain, no inflammation, the affected joints are becoming flexible again, and my underused muscles are becoming stronger. It’s also enabled my immune system to tackle problems I never knew were auto-immune related. I’d just accepted they were due to age. For instance, visual distortions caused by macular degeneration (age related) have reduced so much I hardly notice them anymore, patches of dry, flaky skin are slowly disappearing, my eyelids are no longer puffy and itchy. I have energy and motivation instead of feeling ill and exhausted. I had a few of the well-known, transient effects at the start as my immune system started working the way it’s meant to, but they were nothing compared to what I had been going through.

If more doctors knew more about ldn, more people would be feeling better than they do now and would still be costing the health service far, far less. Thanks Jayne and Andrew for all your work on everyone’s behalf.

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susiejewell, Swansea says...
3:30pm Mon 6 Jul 09

LDN has been a life saver for me. After six years my MS which was secondary progressive has actually improved rather than deteriorated. I'm far from cured but much, much better than before I started it. Thanks to Jayne, Andrew and Bob Lawrence for all their tireless, selfless work.

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Silv Lane, Oxfordshire says...
4:35pm Mon 6 Jul 09

I was lucky to have found LDN before deteriorating more thanks to MS. LDN will now stop the progression of my illness. I've been on it for 6 months now and have even had symptom relief. What a bonus! Everybody with an autoimmune disease should be given the chance to receive LDN. It's a cheap and safe drug, no side effects. Please help make people and government aware of LDN by signing the petition. Everybody I know or have ever spoken to knows somebody with an autoimmune disease. They could all profit from LDN, but they don't even know yet, that it exists. Help spreading the word.

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z100a, uden netherlands says...
6:53pm Mon 6 Jul 09

i have seen beautiful results with low dose naltrexone and AS.
one of the diseases that with ldn you can get amazing results is copd.it is almost never mentioned and it is almost the 3rd biggest killer in the western society.

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tamrakat, Gilroy, CA, USA says...
7:02pm Mon 6 Jul 09

I've had Fibromyalgia since 1995 but the last 2 years have been the hardest with severe pain, nausea, weight loss, too many symptoms to list! I was very lucky to have found out about Low Dose Naltrexone (LDN) a few months ago. I'm now participating in a phase II clinical trial at Stanford University in Northern California in the United States. The clinical trial doctor told me that LDN is less toxic than aspirin! During my first month in the trial all my pain and other symptoms disappeared. I started sewing again, and I'm gaining weight! LDN is a life-saver and I can't stop talking about it to everyone I know. People are suffering and dying everyday who could be helped by LDN. I thought I would suffer with fibromyalgia for the rest of my life, but now I'm filled with hope for a happy future! I wish everyone knew about LDN. This is truly an amazing little drug.

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tbbanks, Cheltenham says...
8:17pm Mon 6 Jul 09

A friend of mine brought your article to my attention as it is a subject close to home. Thank you so much for publicising this issue. I had not heard of LDN but thanks to your campaign, and this article, I now have a lot of information to pass on to members of my family. Keep up your good work, and I wish both of you much success in bringing this to the attention of the appropriate authorities who can hopefully act on it. regards Tom in Cheltenham.

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Aletha, Salinas says...
12:49am Tue 7 Jul 09

My husband has been on LDN for 4.5 years for MS. He saw immediate and amazing results and these results have lasted. His first day his fatigue was gone. Within a week his bladder frequency was much reduced and within 2 weeks was gone. In just the first few months he was back to doing one to two sports a day. His one lesion was no longer enhancing on the MRI after only a couple of months on LDN. Surely if this is a placebo effect it would not have lasted 4.5 years. We cannot be more greatful to have found this amazing little pill. Thanks to Jayne and Andrew and many others for their efforts to get the word out about this drug. I wish everyone knew about it that needed it.

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lucca, says...
3:37am Tue 7 Jul 09

Being one with several autoimmune disorders including lupus and sjogrens, my hopes of getting better were quickly diminishing. I went through a number of treatment failures due to the aggressive nature of immunosuppressants and my particular sensitivities to medications. With a number of doctors on my case, I was never given low-dose naltrexone as an alternative option. I cannot express what it means to have a better, gentler and possibly much more effective way to be treated. I am early into it, but already showing improvements. Because of Jane, Andrew, and all the others that are getting the word out about LDN, my hope for living a full life is renewed.

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Chelseadog, Milford Haven says...
2:48pm Tue 7 Jul 09

I would encourage anyone who suffers from cancer or an auto immune disease seriously look into LDN as first line treatment. Thank you for raising awareness to LDN.

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Lisamc1, Rawnsley says...
4:24pm Tue 7 Jul 09

I take LDN for MS. Within a month of taking it my brain fog had cleared and my energy levels were back to normal. No other currently available drugs in the nhs that treat MS do this. I hope it will also halt the progression of my MS. I have only been taking it for 4 months so it is too soon for me to say for certain if this is happening. This drug needs proper clinical trials to look into this. It should be available to all people who need it.

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nsw240457, Belfast says...
9:11pm Tue 7 Jul 09

I have been taking LDN for 3 months for Rheumatoid Arthritis and myy daughter for HypoThyroid.It is simply not good enough that I cannot get my GP or specialists to even read about LDN let alone support my using it - even when I know and fully accept responsibility for doing so.
BY this petition and this article, and others like them there will be a chance of doctors everywhere and in any specialism to begin to understand how this amazing drug is helpig so many autimmune conditions, and at least be willing to support their patients in the journey back t0o health.

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bwmbagus, Llanelli says...
1:28pm Wed 8 Jul 09

Thankyou everyone for your comments on this. I recently heard a friend has won support from her oncologist to use LDN and research it for her brain tumour so more good news there. Thankyou also to the Western Telegraph for running this story.

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zamandra, Melbourne says...
2:55pm Wed 8 Jul 09

I am an Australian man and am also running a petition for LDN review / trialling and addition to the pharmaceutical benefits listings in Australia. I have personally had favorable results with using this preparation and have perused wide anecdotal claims attesting to its efficacy. Please view it: http://www.gopetitio
n.com/online/28354.h
tml

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smalk50, New Orleans, LA. USA says...
7:55pm Thu 9 Jul 09

I'm in New Orleans, La. USA and have been on LDN since March 2009 for Hepatitis C. My liver tests came back normal and my viral load dropped from over a million to 48,000 in 4 months.

Others with hep c are posting similar results. However, mainstream doctors have no interest in it. My own gastro yelled at me for taking it. It would seem that he would have been happy for me and embraced this new therapy. It is cheap and has few,if any, side effects.


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AndyBran, Swansea says...
10:53pm Thu 9 Jul 09

I attended the recent LDN conference in Glasgow which was oustanding. This treatment is helping thousands of people with zero toxicity and no prolonged side effects. These people are real, I have met them and they are getting better. What on earth is holding this treatment back?

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celia123, Blairingone says...
12:57pm Fri 10 Jul 09

I was diagnosed with incurable lung cancer over three years ago. I started on LDN shortly after my conventional therapy ended and am still here kickin' after being told I only had 6 - 12 months to live. LDN is so cheap and could save the NHS millions of pounds yet it is ignored by those very people who profess to help us, maybe the recent article in the Guardian about big Pharma should be read by all. It is a scandal that I had to find out about LDN myself.....
Celia

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david603, Poole says...
5:10pm Sat 11 Jul 09

My wife has been on LDN for five years, it changed a rapidly deteriorating condition in one of absolute stability. We now know if she had been told of this discovery in 1986 she would not now be in a wheelchair. Thank goodness for information sources like the web.

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S Popple, says...
7:50am Mon 13 Jul 09


What defines the LDN Research Trust? Altruism, an unselfish concern for or devotion to the welfare of others.

LDN users campaign to trial this drug so that it is readily available to all that would benefit from its use.


*LDN is low cost and it is highly effective*


I am inclined to skepticism and researched this drug throughly. There are truly no words to describe how grateful I am for being given the chance to be treated with LDN.

Please support the campaign.


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brianl3336, Blandford Forum says...
1:37pm Mon 13 Jul 09

My wife came to LDN at a rather late stage of her MS - she was losing the use of her last limb and LDN stopped the progression of her MS almost instantaneously - she is now very disabled but can hold a mug in her hand - it does not sound much but believe me it is great to have at least some independence left !!

LDN must be trialed so others can gain from its effectiveness - so sign the petition now !!

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Tom5, says...
8:10pm Mon 13 Jul 09

People Power can put LDN where it should be, a first line treatment. We can all do our bit. Please use the contact form on www.ldnnow.co.uk to register your willingness to help.

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dancingpig, Pencoed says...
7:55am Tue 14 Jul 09

I live in Wales and this article has been passed on by a cousin of mine. I am from a family with a dominant BRCA1 cancer gene and have since done some research of my own into LDN. I am now wondering why this is not being offered by oncologists or neurologists and GPs as front line treatment. I hope this article will kickstart the awareness LDN needs. Well done to the Western Telegraph for allowing Jayne and Andrew to bring this to everyone’s attention.

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smallun, Abbots Langley says...
8:30pm Tue 14 Jul 09

It certainly does need trialing.This drug put me in hospital after 1 3mg dose and a few weeks later after 1 1mg.dose.the same thing occured

Karen

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joybran66, Swansea says...
11:49pm Tue 14 Jul 09

I have never known LDN to put anyone in hospital. Were you in the midsts of a relapse at the time? Taking any conflicting drugs? Is it MS you were taking LDN for?

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Garnet, Texas, USA says...
11:54pm Tue 14 Jul 09

I agree with the absence of a history of LDN having serious adverse reactions. It would be helpful if smallun, Abbots Langley would post a more detailed account. At this point I would have to say this sounds more like a disinformation plant. Apologies to the poster if it is not, but you must understand how this sounds. There are large and powerful interests that stand to benefit from discrediting an inexpensive solution to many disorders.

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bwmbagus, Llanelli says...
12:08am Wed 15 Jul 09

I have never met someone who reacted to a single dose of LDN either. Sorry, I just don't believe this. I remember my first night, I had wild dreams, but that is all. The science of LDN however is well understood and has not observed such a reaction in 30 years of use. This is where the curious should look to evaluate the drug, combined with the clinical evidence of the doctors involved in it's use.

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Bob Lawrence, Swansea says...
1:03am Wed 15 Jul 09

I am so pleased to see such vigorous and extensive support for this simple, safe and versatile remedy.

I have been using and prescribing LDN, for a multitude of different complaints, for the last nine years.

I am very pleased that my efforts have induced so much response and support.

Bob Lawrence

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Aletha, Salinas says...
4:50am Wed 15 Jul 09

There are over 5500 people on the LDN Yahoo chat site and I have never known but one person who really tried out the drug in earnest and felt he got worse. There are some drugs you can't take with LDN which the official LDN chat site lists out, and there are a list of trouble shooting items in case one is having side effects or a return of symptoms. But I have never heard of anyone going into the hospital. If that person could e-mail me at Aletha@redshift.com I would like to hear the full story and be able to ask a few important questions. Thanks, Aletha

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