Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Great job on the survey but I believe for it to be more accurate we would have to include whether a CRAB is being taken in addition to LDN. Could be those with a relapse were on a CRAB, ...or not. Would be interesting to find out. Redtruck. do you think it can be done? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 LDNers: Aegis wonder's if anyone has seen the new relapse data at redtruck's site. Pl. print out the relapse rates and symptom improvements and show it to your neuros. Ask them if they know of any drug that can match that ?. If they dont believe the results, push them to do a small trial. http://home.earthlink.net/~dflomer/LDN/Reports/ Aegis thinks that the most important pieces of information were 1. The relapse rate on LDN is about 1 in 5 years. 2. It appears to stop relapses in PPMS (though maybe by definition, they dont get relapses!). What else can you conclude ?. Any comments on the study ? This survey is a great achievement for all who participated. Aegis Pl. consider joining LDNers LDNers/?yguid=186853141 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 I do think that CRABS must be included in survey.. These are what Dr.B and Dr. Lawrence believe work against LDN. It is not vitamins or other supplements, it is specifically CRABS. Redtruck, your work is very much appreciated and looking foward to new survey.!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Aegis thinks, noclue is not clueless when asking that question. But that question cannot be answered. Some take A, others, B, C, R along with LDN. Yet others take B12, Vit E, C, D, non-fat diet, inosine, and some other stuff Aegis cannot spell. A better way is to compare the LDN results with that obtained by the ABCR's. Perhaps folks can help by providing the relapse rates for the ABCR's. I am sure redtruck will put that on her site. A > Great job on the survey but I believe for it to be more accurate we would > have to include whether a CRAB is being taken in addition to LDN. Could be those > with a relapse were on a CRAB, ...or not. Would be interesting to find out. > Redtruck. do you think it can be done? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 These are good sugestions. We can't go back and update past survey entries, but it might be time for a new questionaire, like past sugestions on dosage vs. body weight. Currently, there is an update at the survey sight examining relapse rate while on LDN, which is comparable to Copaxone relapse rate (0.20 or 1 in 5 years). If anyone has a link to overall ABCR relapse rates, I will post that for comparison. Current results: http://home.earthlink.net/~dflomer/LDN/ I will close the current survey, collect input on current findings, and use this to build a new survey. But we should all contine our efforts to get real trials going, which was the whole point of the survey effort, just to draw attention to a medication that deserves investigation via real trails, based on all this compelling acnecdotal evidence. <aegis_on_ms@y...> wrote: > Aegis thinks, noclue is not clueless when asking that question. > But that question cannot be answered. Some take A, others, B, C, R > along with LDN. Yet others take B12, Vit E, C, D, non-fat diet, > inosine, and some other stuff Aegis cannot spell. > > A better way is to compare the LDN results with that obtained by the > ABCR's. Perhaps folks can help by providing the relapse rates for > the ABCR's. I am sure redtruck will put that on her site. > > A > > > > Great job on the survey but I believe for it to be more accurate > we would > > have to include whether a CRAB is being taken in addition to LDN. > Could be those > > with a relapse were on a CRAB, ...or not. Would be interesting to > find out. > > Redtruck. do you think it can be done? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 I TAKE COPAXONE WITH LDN. I'VE BEEN TAKING COPAXONE SINCE 1998 WHEN I HAD MY FIRST RELAPSE. NONE SINCE TAKING IT, THANK GOD. I WILL CONTINUE MY COPAXONE AS I SEE FIT. KIM R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 CINDY - SO GLAD YOU'RE DOING WELL ON COPAXONE. I NEVER HAD ANY COMPLAINTS OR SIDE EFFECTS. IT WAS SO NICE TO HEAR IT DOES WELL WITH LDN. KIM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Kim R, I'm happy to hear you like copaxone. I just started it about 3 weeks after getting on LDN...so I'm on both now. So far I have no complaints about it.I tolerate it better than Avonex which I had been on for 2.5 years until I had the worst exacerbation that I'd ever had since my dx in 1993.I lost all faith in it then.I started copax when I heard it was compatible with LDN, -------Original Message------- From: low dose naltrexone Date: Monday, June 14, 2004 11:12:48 low dose naltrexone Subject: Re: [low dose naltrexone] Re: LDN survey results I TAKE COPAXONE WITH LDN. I'VE BEEN TAKING COPAXONE SINCE 1998 WHEN I HAD MY FIRST RELAPSE. NONE SINCE TAKING IT, THANK GOD. I WILL CONTINUE MY COPAXONE AS I SEE FIT. KIM R ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Thanks to everyone who has suggestions for a new survey format. But I agree with the points below, it is crucial we get what we have accumulated as evidence out there to the people who can make the trials happen! So please, print out the relapse survey, it is only one page, and mail it or hand carry it to your doctor. That's what I did with my neurologist, and he has proposed an LDN trial at Univ. Texas. Tell your doctor there are other neurologists considering trials, and contact Aegis to corrdinate them. The surveys will continue until we get trials going, but it would be best if we can get this started at the MS centers that can do the real research. /Redtruck --- <aegis_on_ms@...> wrote: LDNers: Aegis wonder's if anyone has seen the new relapse data at redtruck's site. Pl. print out the relapse rates and symptom improvements and show it to your neuros. Ask them if they know of any drug that can match that ?. If they dont believe the results, push them to do a small trial. http://home.earthlink.net/~dflomer/LDN/Reports/ Aegis thinks that the most important pieces of information were 1. The relapse rate on LDN is about 1 in 5 years. 2. It appears to stop relapses in PPMS (though maybe by definition, they dont get relapses!). What else can you conclude ?. Any comments on the study ? This survey is a great achievement for all who participated. Aegis Pl. consider joining LDNers LDNers/?yguid=186853141 Quote Link to comment Share on other sites More sharing options...
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