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January News

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We would like to wish you a Very Merry Christmas and a Happy New year.
Thank you all for your Christmas cards and good wishes they mean a lot to us.
2009 looks like being an exciting year with the first European LDN conference in Glasgow 25th April. I hope to see as many of you there a possible although I know Glasgow is a long way for some of you to travel.

There have been some issues regarding LDN being imported into the UK and you can read about this in detail from Dr Bob Lawrence and pharmacist Stephen Dickson.
Best Wishes to you all,
From us all at the LDN Research Trust.

LDN Petition for people in the UK Only

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We need as many signature on both petitions as possible.



LDN Petition for people all around the world

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1/2 price Desk Calendar SALE

We have a few LDN Research Trust desk calendars left, the price is now £2.50 + £1.50 P&P

For details click Link

If you would like a calendar please email

I had MS at 12 years - Audrey Shannon

I am 39 now, but I've had MS since I was twelve years old when I had diplopia for a few weeks and I had burning sensations in my legs. At 20 I had a lumbar puncture and MRI but it was the late 1980's and the doctors thought it better not to tell me even though they wrote in my medical notes that they 'suspected' MS. Throughout my twenties I had relapses but wasn't officially diagnosed until I ended up in tears in front of a compassionate GP. He sent me for another MRI and the two were compared to confirm MS.

My relapses got progressively worse throughout my thirties and despite following a healthy diet I reached a point where I couldn't see or stand up, mainly because of balance problems. I also had fatigue, which prevented me walking very far; I was generally feeling suicidal and hopeless. I had never tried any drugs. When I started LDN I had spasticity in my legs and general fatigue, but I remember within a matter of days I felt like a new woman. It was as though I had been given my life back. I remember when going to see the neurologist who had originally prescribed LDN a second time, I got off the train at Marylebone station and ran all the way to Harley Street. I ran down the platform at the station and beat everyone to the barriers, which I thought was pretty good considering I'd just spent six months incapable of much at all.

I initially paid for LDN myself but I went to my own GP and asked if she would prescribe LDN. She said 'wow you look fantastic' and prescribed it for me. Another two male GP's at the practice had previously turned me down.

I've now been on LDN 13 months and despite a short mild exacerbation I am still active and full of life.

More than anything LDN has given me hope.


LDN/MS update - Zillah Damon

Since my last report, my life has undergone some fundamental life-changing events.

The first began on Boxing Day 2006 when my stepson, Adam, complained about discomfort in the hip and his mobility was affected. My husband ended up spending a couple of hours with him in casualty. He was booked in for a hospital appointment in early January but none of us suspected how serious his condition was. Neither did the hospital at first then suddenly everything changed and an oncologist was called in. He was suffering from a very virulent form of cancer of the ligament which is extremely rare. My husband and Adam’s mother took it in turns to be at his bedside, with my husband usually there at night. I visited as much as I could, although the shock hadn’t done much for my health. In fact both sides of the family were regular visitors to Adam’s bedside. The way he dealt with this final illness at only 14 years of age was inspirational, but it claimed his life in April, only 4 short months after being diagnosed. You can imagine our feelings at his loss.
My husband was devastated and although I tried my best to support him, he was unable either to share his grief with me, or to witness any evidence of my personal grief. Unfortunately he became more and more distant, spending more and more time away from home. We eventually parted without acrimony just before Christmas 2007, when I finally made the move to live geographically closer to my family as my health was now suffering considerably; I spent a short while living with my mother until I felt able to move into my new home.
So I have just gone through 3 major causes of stress-bereavement, a marriage break-up and moving house (twice). I am convinced I would have been in hospital and on steroids if it hadn’t been for the LDN. These 3 events so close together did cause a relapse, but nothing as bad as one would have expected in normal circumstances. I am working on building myself back up again.


On the positive side, I am able to work four days a week (2 in the office and 2 from home). I have been seeing a physiotherapist who has helped with mobility, but unfortunately these appointments meant I couldn’t take additional time off to go for oxygen therapy. I do find myself getting tired and getting aches and pains. Pins and needles are more pronounced at the moment, so I plan to get back to Nailsea to resume the oxygen therapy as I feel that it and LDN combined seem to work really well for me.
It is now 14 ½ years since I was told that I would be in a wheelchair within a year. Although I do use a scooter to walk the dog (he’s a collie and needs a lot of exercise) and I use a wheelchair for going shopping (e.g. for clothes), on the whole I’m still using my own two feet; although with crutches on occasion. Strangely enough, my situation has helped others. A friend and colleague’s wife was recently diagnosed with M.S. and immediately came to see me for some advice since they felt I was doing quite well. I wish I’d heard about L.D.N at those early stages. There isn’t a cure for M.S. yet, but I’m convinced that LDN is a great help in neutralizing its effects.


LDN V The Reaper - Bwmbagus

In 2007, my MS changed, from the steady intermittent relapses, followed by minimal recovery, into a steady inexorable decline. I remember the day I could no longer walk from the car to the garage to pay for fuel, or pop into a shop as I drive past. Then the pains start in earnest, fierce clonic spasms that made me kick out when my shin touched the edge of the toilet, trying to pee. The hip rotating walk, trying to lift the right leg high enough to make it swing forward in spite of the limp foot. I remember trying to get my dogs to come to me, with horses bearing down, or two women with dogs who ignore my warning calls, until my pack sets upon them. I fell on my arse as usual, pulling tendons, and unable to get up, clutching three leads with dogs attached. They are good dogs. Now they run themselves, they know I cannot go with them.

At the end of August 2008, my girlfriends father sent me an email, telling me about a drug that performs miracles, and I thought it sounded like a Zimbabwean election result. But I kept looking, and slowly the information started to organise my understanding of multiple sclerosis. I have never felt that experience before with this disease, and I know from other research projects, including the masters degree, that this feeling is my intuition screaming in my ear. I checked things, like, “Do MS sufferers have high or low T cell populations?” and “what about beta endorphins?”
Eventually, in the face of a new diagnosis of secondary progressive disease, I realised I have no treatments left that can help me, and if LDN and it’s model of the MS process is correct, I have to know. I have to bet my life on my intuition.

My neurologist knows I know a thing or two about this disease, and he even mentioned the idea that some people believe MS to be fixable by boosting the immune system. He laughed at this idea, but he never told me where the idea came from. I remembered it because it was interesting, but I now know he knows about LDN. We had a conversational relationship, so suddenly I am furious with him. My dogs are angry with him, my girlfriend is angry, how can this be? He did however give me a nice letter informing my GP that prescription of LDN is ok in my case, even though he does not subscribe to the treatment himself, as he has nothing else to offer me. My GP however refused, telling me it could cost him his job, and when I asked him to speak to Dr Lawrence or the neurologist or to observe my improvement after 3 weeks, he refused, saying “I’m a busy man, I don’t have time for this”, and he looked at the floor with his hands up rather than at me, before ordering me to leave his office. Complaint pending, and no GP later, I am buying it from my income support, or is it the DLA, cannot work out which.

Anyhow, the LDN is working spectacularly, the increased endorphins has stamped out 90% of the pain and spasticity, has stopped the clonic spasm, I sleep at night, I can walk with crutches, lifting my right leg to move it forward – no more hip rotating. I can have a bath and stand up after it, I can pick stuff up off the floor and touch my toes. I can kneel on the floor without massive spasm. So if the neurologists are correct, and LDN makes me worse, then I want to be worse on their terms, this has tackled all my symptoms at once. But it hasn’t made it worse, so I’ve won my bet with the reaper already, but I’ll give him a year to prove it, the old bastard he is.


Annmarie’s MS/LDN Update

Update - 25 September, 2008

At the end of July, I had a fantastic hypnotherapy session with Ted Heath who, to-date, has worked with over 300 people with MS. What a fabulous couple of hours! What a positive experience! What a lovely man! I was convinced that counting back from 100 was no problem. I managed 97!! He re-patterned my walking, gave me various triggers for different problems and gave me exercises to strengthen my muscles - all that and took delivery of a parcel whilst keeping Syd (our dog) amused!!

Well, in August we went to Rome for 5 days and I organized four 3-hour walking tours for the family - giving me an enormous mountain to climb if I did them, but knowing that I didn't have to if I felt unwell. Before I relate the outcome, I have to admit that I went well-armed!!

I completed all 4 tours - one of the Coliseum and Forum, a walk along a section of the Apian Way and around the Catacombs, a city tour and a tour of the Vatican and Sistine Chapel!! Admittedly, I had some funny moments, but then I either took a breather or hung on to hubby, son or daughter - whoever was nearest! But, importantly, I didn't slow the group down, so was I pleased with myself, LDN and especially Ted!!

About 2 weeks ago, I had another of my funny weeks when things just didn't seem right, but then up another notch I went. A couple of days ago, I walked around 2 supermarkets without the trolley that over the last 4 years I've needed to hang on to as I couldn't propel myself forward. More often than not, my daughter has had to pull me along on any necessary shopping trips whilst guiding me so that I don't bump into anyone - she's in her
teens and an absolute treasure!!

I was out visiting our son who is now renting a house and in his 2nd year at uni. I asked if he thought my walking and balance had improved. He had, but didn't want to jinx me by saying anything!!!

Also, this week I was out walking Syd with my husband, and we both noticed that I no longer have to hang on to his arm. I can walk again unaided.

I've just taken Syd on a walk by myself. I didn't stop once – pretending to admire a flower, tree etc whilst waiting for my legs to start moving again. I walked there and back just like everyone else does. I'm ecstatic!!!!!!

So, my balance and walking have improved amazingly in the 3 months since writing 'my story' and my sleeping is phenomenal - rarely waking in the night to toilet trot and asleep as soon as my head hits the pillow – and it's a restful sleep. In fact, my husband describes me as 'dead to the world' in seconds.

To sum up, it's now been 4 years since I had my second ever exacerbation, which left me bedridden for a time. I spent the next 3 years getting more and more depressed and convinced that I would soon be in a wheelchair.

In September 2007, a sorry figure visited Dr Bob and Joyce and after a good few hours talking decided there was no down side to taking LDN.

One year later with the help of LDN, GABA, other supplements, a reasonable diet, Dr Bob's good counsel with trusty Joyce and not forgetting the amazing Ted, I now have a life to look forward to.

The best decision ever!!!!


LDN Update for Dr Bob Lawrence's Patients

Dear All,

This is to announce and confirm that the MHRA (the Medicines and Healthcare products Regulatory Authority) have decided to ban the importation of LDN from any source outside the UK.

As we have been obtaining our supplies from Irmat Pharmacy in New York this unfortunately affects us. I am very saddened by this as I have been very happy with the service provided by Irmat, which has included a variety of LDN doses, allowing me to be flexible in the application of the method to so many patients, often with widely varying needs.

We still have a modest supply of capsules currently in stock but this is not expected to last more than about a month-or-so. Because we will then be unable to supply LDN direct we have been effectively forced to change the way we run our service. At present we are in discussion with Stephen Dickson, of Dicksons Chemist, in Glasgow, in order to establish the nature of the service that we will be able to provide.

At present, it is expected that the service will be limited to the issue of private prescriptions, which may then be used to obtain LDN from Dicksons Chemist, either in liquid or capsule form. Each three-month prescription will cost £15-00. With this prescription the LDN may be obtained directly from Dickson's Chemist, 35 Mitchell Arcade, Glasgow G73 2LS. Telephone:0141 6131238.

The LDN will then be sent direct to the patient. There may be a moderate overall increase in the cost to the patient. I would of course continue to offer advice and support to all our patients old and new. We may also use this as an opportunity to try and convince your own GP's to prescribe LDN on the NHS. Please send in your GP's full name and address to us, when Joyce will send a GP support letter in an attempt to convince them to prescribe LDN on the NHS.

Although this sudden and unannounced change imposed by the MHRA will undoubtedly cause great concern to the many who have gained benefit by this method it must be stated that the supply of LDN is expected to continue without interruption and that the need to introduce and promote new manufacturers and suppliers within the UK, by stimulating some measure of competition, will possibly give rise to a progressive reduction in cost.

Do not let this change worry you in any way, we will all eventually get used to these new procedures. In the New Year we will be issuing each patient with a written confirmation of the final changes that will become necessary.

This just leaves me to wish you all a Merry Christmas and a Happy healthy New Year from Joyce and myself.

Bob Lawrence



LDN in the UK— J Stephen Dickson MRPharmS

Dear all,

As you may know, the MHRA (the medicines health regulatory authority) have decided that bringing LDN capsules made in Skips/Irmat or any compounding pharmacy is illegal.

Their reasoning is sound - although US compounding pharmacies are regulated by the FDA (Federal Drug Administration), they are not *inspected* by them.

This means that the capsules they make are not suitable for export to the UK - as they breach GMP standards. (Basically UK minimum drug standards.)

We have previously assumed that as we were importing them on a named patient basis and were accepting full professional liability for the product at this end - we were behaving legally - as long as we were satisfied that the product was safe.

This was an incorrect assumption, and contravened the Medicines Act.

As LDN Capsules have always been available in the UK - the MHRA have decided that it is not necessary for us to have an exemption in this case and we cannot plead special circumstances. (They do not take the ridiculous price of UK capsules into account!)
So basically anyone bringing LDN capsules into the UK from a compounding pharmacy is breaking the law.

What have we done about it? How will we continue supply? What about price?

We have approached a number of UK specials manufacturers and UK drug companies, requesting that large batches of capsules be manufactured - with Avicel as the filler.

We are hoping that if enough volume is generated, then the price will come down - as you all may know, LDN capsules have always been available in the UK from IDIS or Martindales but these have historically be £200+ per month and contained lactose.

We have received the first new batch of capsules- week starting 8th December - and have sent some away for testing. These are lactose free, filled with exactly the same ingredients as the USA capsules and are cheaper than Martindales.


Everything is looking up!

Liquid LDN is still freely available - and will continue to be available. Anyone with a PRIVATE script who was previously on capsules can get LDN.

Unit Dose Vials - no need to refrigerate
These are pre-measured with your daily dose - and 1 bottle = 1 dose. No messing around with syringes.

So, until we are ready to begin capsule supply again- anyone who cannot use a syringe can get the UDVs.
We expect to return to normal service within a few weeks.

Price for one months supply:

Capsules: £25 - £30
Liquid: £15 - £17
Vials: - £30

Everyone at Dickson Chemist wishes you a very merry Christmas!

J Stephen Dickson MRPharmS
Dickson Chemist
0141 647 8032


Help fundraise with Everyclick, search engine.
Membership is free & easy and every search helps raise funds.
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Potions & Possibilities
Welcome to the Potions & Possibilities collection, a superb collection of premium quality aromatherapy and natural health products; all developed and produced in England by trained and qualified aromatherapist, Julie Foster.

All of the range, whether essential oils, therapeutic bath & beauty products or exquisitely hand-packaged gift collections are a reflection of the energy Julie brings to her business.

By click the Link we get a commission on the goods you buy. Make sure to add it to your favourites.

LDN Research Trust Polo Shirts

These unisex loose fitting polo shirts are of a high quality and will stay in shape wash after wash, the colour will not run, smudge or fade.
Colour: White
Made from 100% polyester
Chest Sizes:
Small 38"
Medium 40"
Large 42"
XL 44"
XXL 48"

Price £10

Buy 2 and get Free P&P in the UK only, reduced price elsewhere
Postage and Packing:
UK £1.50 P&P Free if you buy 2
EU: £3
Non EU: £4.75

LDN Research Hypnosis CD’s

We have 2 hypnosis CD’s for people with MS.
They cost £10 each.

For full Details
Link


Help Raise Funds by Recycling your Old Mobile Phones

LDN Research trust has joined forces with Weee Recycle Mobiles to offer a new fund raising scheme. For every phone donated Weee Recycle Mobiles will pay us between £2 and £30, depending on the make and model.

Post your old mobile phones (no chargers please) to:

Freepost Weee Recycle Mobiles

Make sure you add LDN Research Trust on the envelope.

By recycling we will be helping the environment. The number of phones being dumped on landfill sites is becoming a huge problem in the UK and requires our immediate attention. The phones donated will be reused or recycled and then resold. Many will be shipped to developing countries where the price for mobile phones is still high. There are nearly 60 million unwanted phones in the UK alone, and we are hoping everyone can take part so that this will be a successful partnership.
Before you send your phone please ensure you remove your sim card, as you will not be able to get it back (sim cards are recycled too!)


Cash for cartridges
Recycle your old ink cartridges

Please send your cartridges to:

Freepost, RLZL-EUJG-ZYEL
13 Main Street, Keyworth, Nottingham NG12 5AA

Putting our code: R01174, on the envelope.

Or you can print off the freepost address from:

Link


Or email and we will send you pre printed envelope.


Shop online and we get a commission

If you use our link we get a commission from many of the high street shops and more retailers.
Link Sales now on, get a bargain!

Disabled Friendly Holiday Cottage to Rent
Ffions Barn - Brecon Area - Wales

Our members are being offered a 20% discount for summer bookings and it would be available for a long term winter let at a very competitive price. For full details and to book jondavies001@yahoo.co.uk Quote “LDN”
Prices from £248 a week - less the 20% discount.


This delightful, homely and welcoming cottage is situated on the edge of Mynydd Illtyd and close to The National Park Mountain Centre.

Sleeps 4, 2 bedrooms. The kitchen is fitted with an electric double built in oven with hob, dishwasher, microwave, fridge and a freezer, dining table and chairs. The sitting area has a woodburning stove, sofa and chairs and a lovely oak Welsh dresser. TV with SKY digi box ‘free to air‘.

The master bedroom has a superb brass double bed and the second bedroom has twin beds. Both bedrooms have been attractively decorated and the original old oak beams have been retained. The shower room has ‘wet room‘ shower, handbasin and wc.

Bedlinen and towels provided. Central heating and fuel for the woodburner. No mobile telephone reception. Telephone available for in-coming calls. Sorry no pets. Ample parking on the farm yard. A Welcome Park with home made produce. Behind the cottage is a spacious area with grass and a BBQ and garden furniture.

This delightful, homely and welcoming cottage is situated on the edge of Mynydd Illtyd and close to The National Park Mountain Centre. The barn is all on the ground floor and has been adapted for wheel chair users with wide doors, a ‘wet room‘ shower and level floors throughout. Friday to Friday.

Please note:
Due to high fuel costs, there will be a winter heating supplement between:
1st November 2008 and 1st April 2009
payable to the owners.
£20.00 per week
£10.00 per weekend

Special Offer to LDN Research Trust Members

Our members are being offered a 20% discount for summer bookings and it would be available for a long term winter let at a very competitive price. For full details and to book email jondavies001@yahoo.co.uk Quote “LDN”
Prices from £248 a week - less the 20% discount.

Ffion Barn means Foxglove Barn - so called because the lane to the cottage is a mass of pink foxgloves in the summer. The cottage has been restored very thoughtfully to a very comfortable and welcoming place to stay with a mixture of antique and new furniture and décor. The barn is at the end of a lane on a working farm specialising is sheep and Welsh Cobs and Mountain ponies - some of which graze on the open common land nearby. The farm boasts its own Cwm Camlais Castle, very little now remains but enough to show a rocky motte supported by a round tower dating from approximately 1240. This is a perfect location for walks straight from the door out onto the hills with a footpath passing the cottage. It is also the closest property to the Sarn Helen Cycle Route. There is a wealth of Red Kites, Lap Wings, Buzzards and other rare birds. The owners are very helpful and can advise visitors on good local walks and activities. The Mountain Centre where you can find information on The National Park and spend a pleasant time having an excellent meal or just a warming drink and admire the phenomenal panoramic views is just a walk away. There is also camping available in the fields. Friday to Friday bookings.


A Night To Remember - John Mahoney

My Primary Progressive is very much looking after its own business so there's not much that's new to talk about. Instead I've retraced a few tottering steps down Memory Lane as far as 1986 when I was working at the BBC. I'd sent a correspondent and producer to New Zealand to work with a local tv crew covering the Queen's tour at a time when Maoris were protesting about land rights. The protests usually involved groups of Maoris in traditional garb - including grass skirts - greeting Her Majesty by turning their backs on the Royal presence. Then they flicked up their skirts to show the Monarch their bare bottoms, bereft of boxers, Y-fronts or any other form of modesty saver! Quite a striking Antipodean gesture. In vulgar New Zealand parlance this is known locally as a "brown eye!".

Reports of these unusual forms of protest began to appear in newspapers and on news wires but our crew never seemed to be in the right royal place for curtain up. Not that we would have used
pictures of bare bottoms in any case but the chance might have been amusing. Each day the crew checked in; each time I asked: "Why no bare bottoms?". After a while it became quite a running in-house kind of joke.

Then on that fateful night to remember, I was fast asleep in London when the phone rang at 11.45 pm. Someone from the newsroom told me Swedish Prime Minister Olaf Palme has been shot and was lying on a snow covered Stockholm pavement bleeding to death. Olaf Palme was generally regarded as a man of peace. Who could possibly have had a motive to kill him? Even in a world shot through with violence, this was a story I could hardly believe in my wildest nightmares. I asked the caller whether it was a prank in
very bad taste but he denied it.

In the end I thanked him, maintained my disbelief and said I would wait for the midnight radio news to hear confirmation. I quickly took the precaution of booking four seats for a correspondent and crew on the first plane to Stockholm the following morning and went back to my warm bed to await the midnight hour. About one minute to midnight the phone rang again - from New Zealand! "John, we've just managed to get some good shots of a brown eye!".

As Big Ben chimed midnight, I told them to forget it. I thought the whole world had gone barking mad. Down south a bit of amusing madness was happening; up north it was total black and depressing madness and mayhem.



For information how to obtain LDN in the UK or for general LDN information call:

0871 989 9666

Calls costs 10p per minute at all
times, mobile costs may vary.

Outside of the UK please email, we have managed to help people worldwide obtain LDN


LDN Research Trust
PO BOX 1083, Buxton, NORWICH , NR10 5WY UK

Email: contact@ldnresearchtrust.org
www.ldnresearchtrust.org
Trustees: Linda Elsegood, Alex Parker & Neil Lucas

Medical Advisers: Dr Bob Lawrence MRCS; LRCP
Dr Tom Gilhooly MBChB; MRCGP

Fund Raising Director: Steven Blaikie

Newsletter Editor Linda Elsegood

Sub Editor Sophie Marrion
Facebook Administrator Laura Elsegood

Web Masters Tom Műller, Lee Reynolds & Mark Lane

Graphic Designer Graham Parker

The LDN Research Trust is a non-profit-making Registered Charity, and all helpers are volunteers.
However, we are no different from other charities, in that there are unfunded elements which do ultimately cost us money to maintain and operate.

To help us continue our work with people who have Multiple Sclerosis and other conditions that LDN helps with, we would appreciate help with fund-raising, either in cash or in kind. You can be sure that all contributions are greatly appreciated, however small.

We would like to offer our thanks to all those that have made donations, we couldn’t do it without you!

How to make a Donation


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Bank Account No: 60515213