Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 Hi Friends, We got an article on LDN in the Irish Times here on May 18th. A friend of mine from Cork who has MS and is a journalist did the article. He asked me for alot of detail and Joyce and being interested on LDN a bit himself he was dying to get this article in the paper fast. It sparked alot of attention and I've been getting alot of emails from people interested in LDN around Ireland. The MS Society won't give out info but the South East Branch asked could they give out my email and number to those who want further info , so of course I agreed. Anyway the article is below. I'm not overally happy with it though as their are some mistakes in it and some are stupid ones which I already told the journalist to correct after seeing the first draft. n Quinn the pharmacist in Galway mailed me before I ever saw it as it took me a while to get my hands on the paper when I got back from holls. As n pointed out to me copaxone is referred to in the article as an interferon. I couldn't believe the journalist didn't change this , as I'd asked him to. Anyway I hope the general gist of it makes interesting reading for ye. Sorry i'm late showing ye this article but i don't have a scanner and the Irish Times Articles can't be accessed online without paying a subscription so I've had to resort to typing the whole thing out! I'm sending this mail out to all my MS Friends. If any of ye need further info on LDN dont' hesitate to contact me. I've put together information I can send to you in email with attachments. Take care, The Irish Times (Tuesday May 18th 2004) Calls for the radical treatment MS Sufferers in Ireland have begun a campaign for a clinical trial to be carried out on a radical treatment pioneered by a New York medic using a low dosage of Naltrexone (LDN), a generic drug first licenced in the 1980's to treat heroin users. About 6,000 people in Ireland have MS, a disabling neurological disease that interrupts "message traffic" between the brain and the body. Sufferers may lose muscle control, sight and experience fatigue. LDN has apparently yielded positive results for neurologist Dr. Bernard Bihari of Beth Israel Hospital, New York, in halting the progression of MS and reversing its effects to a limited but, in some cases, significant degree for people with the more acute, progressive form. LDN has also been used to treat different types of cancer and other auto-immune diseases such as HIV. Once their petition is complete, the group, headed by Joyce and , intends making a submission to the Minister for Health, Mr. , calling on a clinical trial carried out in Ireland, despite the negative implications for the leading pharmaceutical companies that produce the costly current MS interferon - 'CRAB' treatments, i.e Copaxone, Rebiff, Avonex and Beta-Interferons. Such MS Treatments are expensive and earn the drug companies massive profits. Witness the surge in Biogen Idec and Elan's share price back in February on the day when a new type of MS CRAB treatment - Antegren was announced. Biogen Idex shares jumped $8.91, or 20 per cent, to %53.23, as of 4 p.m., New York time, in Nasdaq Stock Market composite trading, bringing the gain since the year began to 45 per cent. Elan gained 1.85 euro, or 27 per cent, to 8.77 euro in Dublin. Joyce estimates these treatments are currently costing the Irish Government upwards of 24 million euros a year. Joyce believes that if LDN was licensed in Ireland, instead of an annual minimum medication cost of 12,000 euro per patient using one of the beta or interferon treatments, the cost would fall to a fraction of this, with a month's supply costing less than 50 euros. Theoretically, however, the treatment flies in the face of conventional thinking on the underlying dynamic of MS< which effectively sees the erosion of the nerve channel's protective sheet - myelin - over time. Instead of the erosion of the myelin sheet being caused by an over-active immune system, according to Dr Bihari and advocates of LDN, the opposite is the case. By administering low doses of the drug, which is an "opiate antagonist", an immune system deficiency triggered by a lack of secreted endorphins in the brain is reversed. This would open up the possible causes of the predominantly Western disease to such factors as lifestyle, stress and bad diet in addition to other possible causes - viral infection and genetic inheritance. According to Dr Bihari: " Up to the present time, the question of 'What controls the immune system?' has not been present in the curricula of medical colleges and the issue has not formed a part of the perceived wisdom of practising physicians" Nonetheless, he says a body of research over the past two decades has pointed repeatedly to the body's own endorphin secretion (our internal opiods) as playing the central role in the beneficial orchestration of the immune system, and the recognition of this is growing, he insists. Support for this view was published in November 2003 issue of the prestigious New England Journal of Medicine. The MS Resource Centre in Britain is frank in its advise to patients: "LDN is a treatment method that has been in use in the US since 1985 but is relatively new in this country. Despite its claimed successful use in America, until fully prven here, it must be considered as experimental and that no beneficial response can be guaranteed. In addition, despite the fact that the drug is very low dose, the absence of significant introductory or prolonged side-effects cannot be excluded". It adds: " The treatment can only be provided if these conditions are accepted. Naltrexone is a drug, referred to as an opiate antagonist. Its normal use is to treat opiate drug addicts addicted to [drugs] such as heroin or morphone". Its supporters in the medical profession say the brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged "up-regulation" of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood during the following days. According to Joyce, he has seen a dramatic reduction in one of his main symptoms, fatigue, since taking the drug last August. "I've found I have much more energy and was able to drive five hours from Oughterard to Valentia, whereas prior to beginning LDN I was exhausted on much shorter business trips in the passenger seat". He said he first heard of the drug from a friend of his sister-in-law, whose husband also has MS and was seeing the prospect of using a wheelchair loom closer after prolonged attack. "After a few weeks on the treatment he saw a marked halt to his progression and is still walking" he says. However, the view from within the neurological establishment is less positive in the absence of clinical trials with hard scientific evidence gleaned from the much vaunted 'double blind trial' testing method. One of the Republic's leading neurologists, Dr. Sweeney of Cork University Hospital, refuses to entertain such anecdotal claims as a basis for prescribing the drug. Dr. Sweeney says: "Without the scientific data backed up by a double-blind trial, where half the trial group are using aplacebo and the other half are using the treatment, it's impossible to accurately say what the actual benefits of the drug administered in this way would be". It is a view shared among his neurological colleagues in Ireland an dMS Ireland, whose chief executive Dineen says it will not be recommending the treatment based on anecdotal evidence alone. The organisation's spokeswoman, Maura McKeon, adds: "Until trials are carried out on it, we cannot advise people to try this particular product. Up to now, we have received only anecdotal evidence of it's effects". While LDN is not licensed by the Irish Medicines Board (IMB), some GPs are prescribing it on an "experimental basis" when met with patient demands that they as doctors honour their Hippocratic Oath. But for the most part, the few Irish patients who are taking LDN, such as , had to go through Welsh physician Br Bob Lawrence. "I'm in my mid 20s and was diagnosed two years ago, having complained for several years of various symptoms such as fatigue, numbness and stiffness in my legs, etc. However, I found no benefits from the interferon treatments which, like many people, seemed to just make me feel worse," says . Disillusioned by the CRAB set of treatmetns and the growing feeling of her illness progressing, she has been very keen to get on LDN, having researched the treatment through the Web and heard of its benefits from Members of her MS mailing group. Her neurologist, she says, declined to prescribe it on legal grounds. The problem, according to Joyce, lies in the fact there is no money for the big pharmaceutical players bringing on stream a treatment that already exists. "Naltrexone is now a generic drug and is past patenting, so it's not worth a pharmaceutical company's while spending several millions on trials and marketing of the drug, because it's already open season and any low-cost drug company from say India could come along and under-cut their market share in the global treatment of MS". If LDN is to come into greater usage by MS patients, he believes it will most likely be from an Indian drugs company, which are beginning to develop their pharmaceutical sector quickly by manufacturing generic drugs much cheaper than their Western competitors. In the meantime, the campaign to raise awareness o fthe benefits of LDN continues. set up an online petition for a trial to be carried out in Ireland. She started her treatment over three weeks ago and says apart from initial disturbance to her sleeping pattern, sh ehas found she has more energy and problems with her bladder have settled. *Details of the petition are on http://www.thepetitionsite.com/takeaction/110785607 http://edwina.sail.to MS Friends WOSIB Causes Garden Please help by signing the Petition to get Low Dose Naltrexone Trialled for everyone with Multiple Sclerosis http://www.thepetitionsite.com/takeaction/110785607 Does your mail provider give you a FREE online calendar? does. Get Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 The Irish Minister for Health Mr has the trial proposal. I received confirmation of receipt. I will forward him a copy of this article. All the Best --- In low dose naltrexone , <@y...> wrote: > Hi Friends, > > We got an article on LDN in the Irish Times here on May 18th. A friend of mine from Cork who has MS and is a journalist did the article. He asked me for alot of detail and Joyce and being interested on LDN a bit himself he was dying to get this article in the paper fast. It sparked alot of attention and I've been getting alot of emails from people interested in LDN around Ireland. The MS Society won't give out info but the South East Branch asked could they give out my email and number to those who want further info , so of course I agreed. Anyway the article is below. I'm not overally happy with it though as their are some mistakes in it and some are stupid ones which I already told the journalist to correct after seeing the first draft. n Quinn the pharmacist in Galway mailed me before I ever saw it as it took me a while to get my hands on the paper when I got back from holls. As n pointed out to me copaxone is referred to in the article as an interferon. > I couldn't believe the journalist didn't change this , as I'd asked him to. Anyway I hope the general gist of it makes interesting reading for ye. > Sorry i'm late showing ye this article but i don't have a scanner and the Irish Times Articles can't be accessed online without paying a subscription so I've had to resort to typing the whole thing out! > > I'm sending this mail out to all my MS Friends. If any of ye need further info on LDN dont' hesitate to contact me. I've put together information I can send to you in email with attachments. > > Take care, > > > > The Irish Times (Tuesday May 18th 2004) > > Calls for the radical treatment > > > > MS Sufferers in Ireland have begun a campaign for a clinical trial to be carried out on a radical treatment pioneered by a New York medic using a low dosage of Naltrexone (LDN), a generic drug first licenced in the 1980's to treat heroin users. > > About 6,000 people in Ireland have MS, a disabling neurological disease that interrupts " message traffic " between the brain and the body. Sufferers may lose muscle control, sight and experience fatigue. > > LDN has apparently yielded positive results for neurologist Dr. Bernard Bihari of Beth Israel Hospital, New York, in halting the progression of MS and reversing its effects to a limited but, in some cases, significant degree for people with the more acute, progressive form. > > LDN has also been used to treat different types of cancer and other auto-immune diseases such as HIV. > > Once their petition is complete, the group, headed by Joyce and , intends making a submission to the Minister for Health, Mr. , calling on a clinical trial carried out in Ireland, despite the negative implications for the leading pharmaceutical companies that produce the costly current MS interferon - 'CRAB' treatments, i.e Copaxone, Rebiff, Avonex and Beta- Interferons. > > Such MS Treatments are expensive and earn the drug companies massive profits. Witness the surge in Biogen Idec and Elan's share price back in February on the day when a new type of MS CRAB treatment - Antegren was announced. > > Biogen Idex shares jumped $8.91, or 20 per cent, to %53.23, as of 4 p.m., New York time, in Nasdaq Stock Market composite trading, bringing the gain since the year began to 45 per cent. > > Elan gained 1.85 euro, or 27 per cent, to 8.77 euro in Dublin. > > Joyce estimates these treatments are currently costing the Irish Government upwards of 24 million euros a year. Joyce believes that if LDN was licensed in Ireland, instead of an annual minimum medication cost of 12,000 euro per patient using one of the beta or interferon treatments, the cost would fall to a fraction of this, with a month's supply costing less than 50 euros. > > Theoretically, however, the treatment flies in the face of conventional thinking on the underlying dynamic of MS< which effectively sees the erosion of the nerve channel's protective sheet - myelin - over time. > > Instead of the erosion of the myelin sheet being caused by an over- active immune system, according to Dr Bihari and advocates of LDN, the opposite is the case. > > By administering low doses of the drug, which is an " opiate antagonist " , an immune system deficiency triggered by a lack of secreted endorphins in the brain is reversed. > > This would open up the possible causes of the predominantly Western disease to such factors as lifestyle, stress and bad diet in addition to other possible causes - viral infection and genetic inheritance. > > According to Dr Bihari: " Up to the present time, the question of 'What controls the immune system?' has not been present in the curricula of medical colleges and the issue has not formed a part of the perceived wisdom of practising physicians " > > Nonetheless, he says a body of research over the past two decades has pointed repeatedly to the body's own endorphin secretion (our internal opiods) as playing the central role in the beneficial orchestration of the immune system, and the recognition of this is growing, he insists. > > Support for this view was published in November 2003 issue of the prestigious New England Journal of Medicine. > > The MS Resource Centre in Britain is frank in its advise to patients: " LDN is a treatment method that has been in use in the US since 1985 but is relatively new in this country. Despite its claimed successful use in America, until fully prven here, it must be considered as experimental and that no beneficial response can be guaranteed. In addition, despite the fact that the drug is very low dose, the absence of significant introductory or prolonged side- effects cannot be excluded " . > > It adds: " The treatment can only be provided if these conditions are accepted. Naltrexone is a drug, referred to as an opiate antagonist. Its normal use is to treat opiate drug addicts addicted to [drugs] such as heroin or morphone " . > > Its supporters in the medical profession say the brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged " up- regulation " of vital elements of the immune system by causing an increase in endorphin and enkephalin production. > > Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood during the following days. > > According to Joyce, he has seen a dramatic reduction in one of his main symptoms, fatigue, since taking the drug last August. > > " I've found I have much more energy and was able to drive five hours from Oughterard to Valentia, whereas prior to beginning LDN I was exhausted on much shorter business trips in the passenger seat " . > > He said he first heard of the drug from a friend of his sister-in- law, whose husband also has MS and was seeing the prospect of using a wheelchair loom closer after prolonged attack. > > " After a few weeks on the treatment he saw a marked halt to his progression and is still walking " he says. > > However, the view from within the neurological establishment is less positive in the absence of clinical trials with hard scientific evidence gleaned from the much vaunted 'double blind trial' testing method. > > One of the Republic's leading neurologists, Dr. Sweeney of Cork University Hospital, refuses to entertain such anecdotal claims as a basis for prescribing the drug. > > Dr. Sweeney says: " Without the scientific data backed up by a double-blind trial, where half the trial group are using aplacebo and the other half are using the treatment, it's impossible to accurately say what the actual benefits of the drug administered in this way would be " . > > It is a view shared among his neurological colleagues in Ireland an dMS Ireland, whose chief executive Dineen says it will not be recommending the treatment based on anecdotal evidence alone. > > The organisation's spokeswoman, Maura McKeon, adds: " Until trials are carried out on it, we cannot advise people to try this particular product. Up to now, we have received only anecdotal evidence of it's effects " . > > While LDN is not licensed by the Irish Medicines Board (IMB), some GPs are prescribing it on an " experimental basis " when met with patient demands that they as doctors honour their Hippocratic Oath. But for the most part, the few Irish patients who are taking LDN, such as , had to go through Welsh physician Br Bob Lawrence. > > " I'm in my mid 20s and was diagnosed two years ago, having complained for several years of various symptoms such as fatigue, numbness and stiffness in my legs, etc. However, I found no benefits from the interferon treatments which, like many people, seemed to just make me feel worse, " says . > > Disillusioned by the CRAB set of treatmetns and the growing feeling of her illness progressing, she has been very keen to get on LDN, having researched the treatment through the Web and heard of its benefits from Members of her MS mailing group. Her neurologist, she says, declined to prescribe it on legal grounds. > > The problem, according to Joyce, lies in the fact there is no money for the big pharmaceutical players bringing on stream a treatment that already exists. > > " Naltrexone is now a generic drug and is past patenting, so it's not worth a pharmaceutical company's while spending several millions on trials and marketing of the drug, because it's already open season and any low-cost drug company from say India could come along and under-cut their market share in the global treatment of MS " . > > If LDN is to come into greater usage by MS patients, he believes it will most likely be from an Indian drugs company, which are beginning to develop their pharmaceutical sector quickly by manufacturing generic drugs much cheaper than their Western competitors. > > In the meantime, the campaign to raise awareness o fthe benefits of LDN continues. > > set up an online petition for a trial to be carried out in Ireland. > > She started her treatment over three weeks ago and says apart from initial disturbance to her sleeping pattern, sh ehas found she has more energy and problems with her bladder have settled. > > *Details of the petition are on http://www.thepetitionsite.com/takeaction/110785607 > > > > > > > > > > > http://edwina.sail.to > MS Friends > WOSIB Causes Garden > > Please help by signing the Petition to get Low Dose Naltrexone Trialled for everyone with Multiple Sclerosis > http://www.thepetitionsite.com/takeaction/110785607 > > > > > > > > > > --------------------------------- > Does your mail provider give you a FREE online calendar? does. > Get Quote Link to comment Share on other sites More sharing options...
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