Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 So we (ldn. users)got a small nod from the Multiple Sclerosis International Fedration but the Nuero who talked about it is not agreeing on it's being used with no trials as if thats a surprise. The article is entitled Lowdosenaltrexone what do we know? It sounds to me they know way less than we do. Go to http://www.msif.org/goemail.rm?id=374 If you want to get heated up. Reg. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Reg: This is FANTASTIC. Their main objection is that LDN boosts the immune system, whereas the interferons suppress it. This thinking has been propagated by Dr.Bihari, IMHO current data does not support this thinking very much. I will write to their consultant indicating that LDN may work by preventing apoptosis. We need to propagate the anti-apoptotic mechanism. This makes more sense and the clinicians will more readily accept it. Neuroprotection is a hot topic these days. Yash --- In low dose naltrexone , " Reg Kreil " <regkreil@h...> wrote: > So we (ldn. users)got a small nod from the Multiple Sclerosis International > Fedration but the Nuero who talked about it is not agreeing on it's being > used with no trials as if thats a surprise. > The article is entitled Lowdosenaltrexone what do we know? > It sounds to me they know way less than we do. > Go to http://www.msif.org/goemail.rm?id=374 If you want to get heated up. > Reg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Current use of LDN in MSSome people with MS in the UK may have been prescribed LDN by their own GPs. Between 300 and 400 people with MS have bought the drug from a retired GP in Wales. But no-one is collecting information on its possible benefits and side-effects. A neurologist in Dublin has used LDN in a few people with MS and found it ineffective. However, the drug’s advocates say that the wrong formulation of LDN was used.The retired GP does not see the patients to whom he prescribes and sells the drug. He does not record any of their medical details or seek confirmation that people asking for LDN have MS. Nor does he consult with their GP or neurologist. This falls short of the normal standards for prescribing a drug in this country, where most people would expect to see the prescribing doctor and trust there was liaison between the various doctors involved in their care. Attempts to rectify these shortcomings are currently taking place. Did that neurologist in Dublin Document and Collect Information about his patients? Did he document how it was ineffective? ----- Original Message ----- From: Reg Kreil low dose naltrexone Sent: Wednesday, June 16, 2004 11:09 Subject: [low dose naltrexone] MSIF article on ldn So we (ldn. users)got a small nod from the Multiple Sclerosis International Fedration but the Nuero who talked about it is not agreeing on it's being used with no trials as if thats a surprise. The article is entitled Lowdosenaltrexone what do we know? It sounds to me they know way less than we do. Go to http://www.msif.org/goemail.rm?id=374 If you want to get heated up. Reg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I know that the doctor who carried out his own research in Dublin is Dr. Hutchinson. I know this as when talking to Dr. Lawrence a few months back Dr. Lawrence was aware Dr. Hutchinson was going to do his own study. Dr. HUtchinson is a leading neurologist in Ireland and from what I gather he was getting alot of requests for LDN from patietns with MS so he decided to do his own little study on a few patients. No one seesm to have seen written results from his so called study. I'm not sure how many patients he did the study on but it was a ridiculous study in my opinion as it didn't carry on long. As far as I know Dr. Hutchinson only carried the study on for a few months and then decided to scrap it as his patients weren't getting any benefits from it. Dr. Lawrence also told me that in the study all patietns used the liquid form of LDN and it is suspected that the patients werent even informed that it's important to keep LDN refrigerated whole time. I'mnot sure what strenthgs of LDN were given but Dr Lawrences main concern was that the study only lasted a very few months and it was all liquid form of LDN used which Dr. Lawrence said was hard to analyse ina study as pateitns may not have looked after the LDN properly and it may have deteriorated etc. Dr. LAwrence felt that using the pill form would have been better for the study or even a mix of some using pill and some using liquid. To me it seems like Dr. Hutchinson just wanted to do a little study but without any patience and then he decided to quit it thinking like many other Neuros that LDN is crap and then to tell all the other Neuros around Ireland not to prescribe it cause it's crap too. And guess what all the other Neuros will believe that LDN is crap jsut cause Dr. Hutchinson says so even though there seesm to be no recorded results of his ridiculous trial!!! --- In low dose naltrexone , " LarryGC " <larrygc@s...> wrote: > Current use of LDN in MS > Some people with MS in the UK may have been prescribed LDN by their own GPs. Between 300 and 400 people with MS have bought the drug from a retired GP in Wales. But no-one is collecting information on its possible benefits and side-effects. A neurologist in Dublin has used LDN in a few people with MS and found it ineffective. However, the drug's advocates say that the wrong formulation of LDN was used. > > > Did that neurologist in Dublin Document and Collect Information about his patients? Did he document how it was ineffective? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 What are the "Attempts to rectify these shortcomings" are they conducting a study? I think not! Are they making it harder for the people to obtain the ldn? Yes probably. My Nuerologist said it didn't work here in one patient either! One patient..The only one he tried it on..how long did he try it? What were the circumstances behind it? It is a sad day when one patient can determine the outcome of a drug. Reg. -------Original Message------- From: low dose naltrexone Date: 06/17/04 04:24:36 low dose naltrexone Subject: Re: [low dose naltrexone] MSIF article on ldn Current use of LDN in MSSome people with MS in the UK may have been prescribed LDN by their own GPs. Between 300 and 400 people with MS have bought the drug from a retired GP in Wales. But no-one is collecting information on its possible benefits and side-effects. A neurologist in Dublin has used LDN in a few people ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Mine tried every trick in the book too. Others were asking about it, EVERYONE who tried it stopped taking it. EVERYONE. Of course, he can't give ME a list of names. Even during my 3 month follow ups, he was still so negative. Well, just because you're having good results, doesn't mean it will last. Then he had me talk to this nurse doing a "survey". A bunch of questions I gave 1 through 5 answers, and then a 25 foot walk that she timed. I did it in 5 seconds and her face lit up and she said she's not had ANY patients do it that quickly. This was back in October. Was she doing this 2 weeks? Or has she been doing it for 5 years? I don't know, I didn't think to ask her. I just told her about LDN, she wrote down the website. She said she'll be back in a year and I already have the follow up date in my lin Planner, so it'll pop up for that subsequent neuro visit. Well, let them all figure out what to do... I have my supply to get me through the summer and that's my focus for now. My rollercoaster is slowly climbing up to the top.. this weekend will be the top... almost time to sing See You in September. I don't know what to expect, I just need LDN to help me Be there. The facts will come out... some day. ----- Original Message ----- From: Reg Kreil low dose naltrexone Sent: Thursday, June 17, 2004 11:40 Subject: Re: [low dose naltrexone] MSIF article on ldn What are the "Attempts to rectify these shortcomings" are they conducting a study? I think not! Are they making it harder for the people to obtain the ldn? Yes probably. My Neurologist said it didn't work here in one patient either! One patient..The only one he tried it on..how long did he try it? What were the circumstances behind it? It is a sad day when one patient can determine the outcome of a drug. Reg. -------Original Message------- From: low dose naltrexone Date: 06/17/04 04:24:36 low dose naltrexone Subject: Re: [low dose naltrexone] MSIF article on ldn Current use of LDN in MSSome people with MS in the UK may have been prescribed LDN by their own GPs. Between 300 and 400 people with MS have bought the drug from a retired GP in Wales. But no-one is collecting information on its possible benefits and side-effects. A neurologist in Dublin has used LDN in a few people ____________________________________________________ Quote Link to comment Share on other sites More sharing options...
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