Guest guest Posted June 24, 2006 Report Share Posted June 24, 2006 Jim, Costly to you guys is maybe not the same as costly is to me. The injections cost about £180/$400 each, in the UK. You have to take it in lots of 15. It was originally recommended that you take 2/week but there is now talk that 1/week might be enough. I can't afford 2/week There have been some good reports about it, but like with everythng else, there are no guarantees. I'm going to try it for 15 weeks. N Nothing ventured....... The hope is that the price will very quickly reduce to a more reasonable level, guess that will probably depend on how quickly it gets a license. I think if you want to try it just now, you'll have to move to the UK, or maybe Australia. I'd choose the latter, Gayle lives there. You can get some more info here. http://www.proventus.org.uk/ The reason why I've held off so far is that there are logistical problems with getting it delivered. It has to be delivered frozen, in batches of 15 units, and then stored in a freezer. They've been talking to a chemist in Glasgow, and that has now been finalised. It's the same chemist that I get the LDN from. Sorry, pharmacy. Hey, I can speak American when I want to. I'm bilingual. Now I'm off to open a couple of "stubbies" and throw a couple of "snags" on the "barbie". Sorry, I've slippped into Australian. I'm trilingual. Are you impressed Gayle ? I've been practicing. Danny (UK) Re: [low dose naltrexone] Re: Off Topic - Threelac Hi Danny (UK) I've been corresponding with this with: "The Multiple Sclerosis Resource CentreA National charity dedicated to supporting anyone affected by MS.www.msrc.co.ukCharity No 1033731Patron Alastair Hignell", she's been very nice, she said Aimspro is costly, how much would it cost in American dollars? If Aimspro works, I would consider coming to the UK for treatment. Jim H. (North Dakota) USA .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 Hi Hairbear - Saw my name and thought - ??? About aimspro??? If it's available here in Oz I don't know about it! Have I had my head buried for too long? Cheers - Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 Gayle, I may be wrong in assuming it to be available over there. The Aimspro that is available in the UK now, is being imported from Oz. I think the story is this. The goats that the blood/serum was originally extracted from were raised in the US, but when CJD (our mad cow disease) showed up there, production was switched to Australia. MS is bad enough, the human form of CJD is much worse. It won't be the first time I've jumped to the wrong conclusion, won't be the last. Danny (UK) RE: [low dose naltrexone] Off Topic - Aimspro Hi Hairbear - Saw my name and thought - ??? About aimspro??? If it's available here in Oz I don't know about it! Have I had my head buried for too long? Cheers - Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 Hiya - Now wouldn't that be right - we export it but can't have it here. We export all our good stuff - send it away to be made into something useful, because we can't afford our own labour costs, and buy it back at 100 times the price. Must all be getting too much sun. Are you having a bad time MS-wise at the moment, Allan? Have you been looking at Aimspro long? I follow the talk a bit, but there's so much happening I find it really hard to keep up. I just sort of assume that if I keep my feelers out I'll hear about new stuff when it's available. I might be offered a place in a trial for an oral beta-interferon med soon; that's going to be a hard one for me as I don't feel I've given LDN a long enough try-out yet. But, as I'm sure my hour in the MRI machine yesterday will show, the MS is not stopping and I want to find something that works. Quickly. I'm actually feeling better day by day, but my last relapse was just plain scary and I truly thought I'd not recover much at all, after a few months had gone by and I was still doing badly. Turns out I had a bad case of brain mush. There's stuff I'm just starting to remember now, that had totally gone from my memory. You know, I really do enjoy reading your posts. You seem to have a sort of warped humour (and a lack of patience for crap) that I appreciate. Oh...and didn't YOU get you very hairy head bitten off! Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Gayle, I'm back again. Took a few days out to lick my wounds and get a hair cut. No, I've not been having a very good time last few days, that was very perceptive of you. (today's big word) I'm hoping it's just the withdrawl from the Gabapentin. I really should have known better. There's no fool...... Tell me more about this "Brain Mush". It's not a medical term I've come across before, but it would certainly describe what I'm experiencing now. I started looking into "Aimspro" a few years ago, but I thought the trials had been abandoned, just another false dawn. It was only recently that I found out the story about the CJD and that you'd taken over production from the Yanks. Glad we've found a use for your lot at last. When the goats reach the end of their useful life, I hope you Aussies will eat them humanely. I hadn't heard about oral betainterferon. What's it called, LDN ? I've done my ten years on Rebif, and I don't think I'll be going back. But you go for it girl, if that's what you want. Problem with the trials is that you might end up on a placebo. At least we know that the LDN is the real deal. At least, I'm confident mine is. Are you ? I hear Kylie's recovering well. Good, would you like to export her back to us now. And maybe you could take Rolf home at the same time. That's your guys away to kick off now. I 'll cheer them on for you, but I think the Italians might be too good for you. Nice photo ! Late twenties maybe ? Danny RE: [low dose naltrexone] Off Topic - Aimspro Hiya - Now wouldn't that be right - we export it but can't have it here. We export all our good stuff - send it away to be made into something useful, because we can't afford our own labour costs, and buy it back at 100 times the price. Must all be getting too much sun. Are you having a bad time MS-wise at the moment, Allan? Have you been looking at Aimspro long? I follow the talk a bit, but there's so much happening I find it really hard to keep up. I just sort of assume that if I keep my feelers out I'll hear about new stuff when it's available. I might be offered a place in a trial for an oral beta-interferon med soon; that's going to be a hard one for me as I don't feel I've given LDN a long enough try-out yet. But, as I'm sure my hour in the MRI machine yesterday will show, the MS is not stopping and I want to find something that works. Quickly. I'm actually feeling better day by day, but my last relapse was just plain scary and I truly thought I'd not recover much at all, after a few months had gone by and I was still doing badly. Turns out I had a bad case of brain mush. There's stuff I'm just starting to remember now, that had totally gone from my memory. You know, I really do enjoy reading your posts. You seem to have a sort of warped humour (and a lack of patience for crap) that I appreciate. Oh...and didn't YOU get you very hairy head bitten off! Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Just a quick thought to Gayle (and the newbie, Peg, as well) on this: As I understand it, all 4 interferon meds counteract LDN, so it's one drug or the other, I'm afraid -- not both. The only traditional med that Dr Bihari OK's for use WITH LDN is Copaxone -- which I've been on for 7 yrs now without side-effects... Danny: I had heard the story about Aimspro a few years ago over here and am still waiting for it to come and save me! What is the CJD story though? Rae From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of HairbearSent: Monday, June 26, 2006 10:43 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Off Topic - Aimspro Gayle, I'm back again. Took a few days out to lick my wounds and get a hair cut. No, I've not been having a very good time last few days, that was very perceptive of you. (today's big word) I'm hoping it's just the withdrawl from the Gabapentin. I really should have known better. There's no fool...... Tell me more about this "Brain Mush". It's not a medical term I've come across before, but it would certainly describe what I'm experiencing now. I started looking into "Aimspro" a few years ago, but I thought the trials had been abandoned, just another false dawn. It was only recently that I found out the story about the CJD and that you'd taken over production from the Yanks. Glad we've found a use for your lot at last. When the goats reach the end of their useful life, I hope you Aussies will eat them humanely. I hadn't heard about oral betainterferon. What's it called, LDN ? I've done my ten years on Rebif, and I don't think I'll be going back. But you go for it girl, if that's what you want. Problem with the trials is that you might end up on a placebo. At least we know that the LDN is the real deal. At least, I'm confident mine is. Are you ? I hear Kylie's recovering well. Good, would you like to export her back to us now. And maybe you could take Rolf home at the same time. That's your guys away to kick off now. I 'll cheer them on for you, but I think the Italians might be too good for you. Nice photo ! Late twenties maybe ? Danny RE: [low dose naltrexone] Off Topic - Aimspro Hiya - Now wouldn't that be right - we export it but can't have it here. We export all our good stuff - send it away to be made into something useful, because we can't afford our own labour costs, and buy it back at 100 times the price. Must all be getting too much sun. Are you having a bad time MS-wise at the moment, Allan? Have you been looking at Aimspro long? I follow the talk a bit, but there's so much happening I find it really hard to keep up. I just sort of assume that if I keep my feelers out I'll hear about new stuff when it's available. I might be offered a place in a trial for an oral beta-interferon med soon; that's going to be a hard one for me as I don't feel I've given LDN a long enough try-out yet. But, as I'm sure my hour in the MRI machine yesterday will show, the MS is not stopping and I want to find something that works. Quickly. I'm actually feeling better day by day, but my last relapse was just plain scary and I truly thought I'd not recover much at all, after a few months had gone by and I was still doing badly. Turns out I had a bad case of brain mush. There's stuff I'm just starting to remember now, that had totally gone from my memory. You know, I really do enjoy reading your posts. You seem to have a sort of warped humour (and a lack of patience for crap) that I appreciate. Oh...and didn't YOU get you very hairy head bitten off! Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Rae, The goats from which the blood was drawn, and the serum extracted, were originally reared in the US. Here in the UK we still had a problem with CJD (mad cow disease) at the time. The French, among many others, only recently lifted their ban on British beef. Quite rightly. I stopped eating all red meat when the disease first surfaced in the 80's. The British goverment tried to hide it for years with a huge cover up. One of the many things that makes me ashamed of being British. Anyway, CJD finally turned up in the US and the trials were halted. If you've ever seen film of some of the young people dying from the human form of CJD, you'd understand. And it was mainly young people who developed it. MS is bad, CJD is much worse. The disease lies dormant for years. I still don't think they have any test for it, and it's still not known how many people here are carrying it. Production was switched to Australia, and the serum is only now being imported into the UK from there. It's very expensive, between £200 and £400 a week, depending on whether you take one or two injections/week. There have been some trials completed and I think the safety of the serum has been established, but as yet it has not been licensed. The only way we can get it here is on private prescription. It has to be delivered and stored frozen, and thawed out just before injection. I have been assured that it can be taken with LDN, and I have started down the path to get it prescribed. It has to be purchased in batches of 15, that should be enough to find out it can help me. Danny RE: [low dose naltrexone] Off Topic - Aimspro Hiya - Now wouldn't that be right - we export it but can't have it here. We export all our good stuff - send it away to be made into something useful, because we can't afford our own labour costs, and buy it back at 100 times the price. Must all be getting too much sun. Are you having a bad time MS-wise at the moment, Allan? Have you been looking at Aimspro long? I follow the talk a bit, but there's so much happening I find it really hard to keep up. I just sort of assume that if I keep my feelers out I'll hear about new stuff when it's available. I might be offered a place in a trial for an oral beta-interferon med soon; that's going to be a hard one for me as I don't feel I've given LDN a long enough try-out yet. But, as I'm sure my hour in the MRI machine yesterday will show, the MS is not stopping and I want to find something that works. Quickly. I'm actually feeling better day by day, but my last relapse was just plain scary and I truly thought I'd not recover much at all, after a few months had gone by and I was still doing badly. Turns out I had a bad case of brain mush. There's stuff I'm just starting to remember now, that had totally gone from my memory. You know, I really do enjoy reading your posts. You seem to have a sort of warped humour (and a lack of patience for crap) that I appreciate. Oh...and didn't YOU get you very hairy head bitten off! Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Great news. There I was thinking it was a 1-time shot and Voila!--the MSer magically started feeling all better again. Consider yourself America's Bond and spy away on this encouraging new treatment! Rae (alias Q) From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of HairbearSent: Monday, June 26, 2006 2:32 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Off Topic - Aimspro Rae, The goats from which the blood was drawn, and the serum extracted, were originally reared in the US. Here in the UK we still had a problem with CJD (mad cow disease) at the time. The French, among many others, only recently lifted their ban on British beef. Quite rightly. I stopped eating all red meat when the disease first surfaced in the 80's. The British goverment tried to hide it for years with a huge cover up. One of the many things that makes me ashamed of being British. Anyway, CJD finally turned up in the US and the trials were halted. If you've ever seen film of some of the young people dying from the human form of CJD, you'd understand. And it was mainly young people who developed it. MS is bad, CJD is much worse. The disease lies dormant for years. I still don't think they have any test for it, and it's still not known how many people here are carrying it. Production was switched to Australia, and the serum is only now being imported into the UK from there. It's very expensive, between £200 and £400 a week, depending on whether you take one or two injections/week. There have been some trials completed and I think the safety of the serum has been established, but as yet it has not been licensed. The only way we can get it here is on private prescription. It has to be delivered and stored frozen, and thawed out just before injection. I have been assured that it can be taken with LDN, and I have started down the path to get it prescribed. It has to be purchased in batches of 15, that should be enough to find out it can help me. Danny RE: [low dose naltrexone] Off Topic - Aimspro Hiya - Now wouldn't that be right - we export it but can't have it here. We export all our good stuff - send it away to be made into something useful, because we can't afford our own labour costs, and buy it back at 100 times the price. Must all be getting too much sun. Are you having a bad time MS-wise at the moment, Allan? Have you been looking at Aimspro long? I follow the talk a bit, but there's so much happening I find it really hard to keep up. I just sort of assume that if I keep my feelers out I'll hear about new stuff when it's available. I might be offered a place in a trial for an oral beta-interferon med soon; that's going to be a hard one for me as I don't feel I've given LDN a long enough try-out yet. But, as I'm sure my hour in the MRI machine yesterday will show, the MS is not stopping and I want to find something that works. Quickly. I'm actually feeling better day by day, but my last relapse was just plain scary and I truly thought I'd not recover much at all, after a few months had gone by and I was still doing badly. Turns out I had a bad case of brain mush. There's stuff I'm just starting to remember now, that had totally gone from my memory. You know, I really do enjoy reading your posts. You seem to have a sort of warped humour (and a lack of patience for crap) that I appreciate. Oh...and didn't YOU get you very hairy head bitten off! Gayle Quote Link to comment Share on other sites More sharing options...
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