Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Dear Yash, I have not checked in for a while, so was delighted to see the possability of a trial. I am trying to find an investor to do any kind of trial on erythema nodosum which I have had for over 35 years. Could you tell me how you found this investor and any tips on getting in touch with people who can make something happen? I was advised to try to find a researcher who had a grant to do related research. EN is another autoimmune disorder and often presents with Crohn's and sarcoidosis. LDN is being studied for Crohn's by dr. B, right? Best reagards, > Just a follow up. The recent feed back from the Italian group is that > the principle investigator will submit the LDN protocol to their > Chief for approval within a week or so. The Chief's approval can take > 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic > about a pilot study at the very least. > > Otherwise I will start all over again :-(. > > Keep tuned. > > Yash > > P.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 I ask my neuro to start his own study on naltrexone. He does MS research at McGill university in Montreal,canada. He said that it would be expensive because you'd need at least 500 patients and 2 MRI each which would come to about 500,000$. But he said the most difficlut part is to find a way to study how and what exactly the endorphins do. I'm still trying to get him to see that naltrexone is good for us with MS. Luckily I didn't have to wait for him to write me a prescription. > Just a follow up. The recent feed back from the Italian group is that > the principle investigator will submit the LDN protocol to their > Chief for approval within a week or so. The Chief's approval can take > 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic > about a pilot study at the very least. > > Otherwise I will start all over again :-(. > > Keep tuned. > > Yash > > P.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi : I guess you mean investigator as opposed to investor. The best way to find an investigator (scientist) is to search the NIH databases for scientists studying EN and then contact them. Another way is took for publications on EN in the pubmed database. It helps if you have a scientist or MD contact them, as then they would be more amenable to listening!. Also Dr.B is not himself studying Crohn's, but another doc named Jill . Yash > > Just a follow up. The recent feed back from the Italian group is that > > the principle investigator will submit the LDN protocol to their > > Chief for approval within a week or so. The Chief's approval can take > > 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic > > about a pilot study at the very least. > > > > Otherwise I will start all over again :-(. > > > > Keep tuned. > > > > Yash > > > > P.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 A simple way that every neuro can do is to put the patients on LDN and see if they progress on the EDSS scale. That should cost next to nothing. Yash > > Just a follow up. The recent feed back from the Italian group is > that > > the principle investigator will submit the LDN protocol to their > > Chief for approval within a week or so. The Chief's approval can > take > > 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic > > about a pilot study at the very least. > > > > Otherwise I will start all over again :-(. > > > > Keep tuned. > > > > Yash > > > > P.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Yash, Good work!! This is an excellent development. Do you have any info about the protocol itself? I saw the discussion about the various costs of doing a trial. A big " if " is whether or not MRIs are included. Typically what I have seen with the ABCR drugs is that there are 3 endpoints for the trials: number of excascerbations, EDSS progression, and MRI results. Two of those three can be monitored with little to no cost, its only the MRI that costs big $$$. Again, good work. I am still working avenues of my own and I'll update you offline when I have more info. Rob > Just a follow up. The recent feed back from the Italian group is that > the principle investigator will submit the LDN protocol to their > Chief for approval within a week or so. The Chief's approval can take > 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic > about a pilot study at the very least. > > Otherwise I will start all over again :-(. > > Keep tuned. > > Yash > > P.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 That's a good idea. I'll mention it to him when I see him again. I can't imagine he hasn't thought of it though. > > > Just a follow up. The recent feed back from the Italian group is > > that > > > the principle investigator will submit the LDN protocol to their > > > Chief for approval within a week or so. The Chief's approval can > > take > > > 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic > > > about a pilot study at the very least. > > > > > > Otherwise I will start all over again :-(. > > > > > > Keep tuned. > > > > > > Yash > > > > > > P.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 -------Original Message------- From: low dose naltrexone Date: 05/10/04 17:19:23 low dose naltrexone Subject: [low dose naltrexone] Re: Towards a trial >> Oops my mistake I think in the last letter I claimed Asparagus was good for swelling I really meant Parsley PARSLEY not asparagus Sorry for the confusion. Reg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Pardon my ignorance, but what is an EDSS scale? Tom from Edmonton ----- Original Message ----- From: Johanne F low dose naltrexone Sent: Monday, May 10, 2004 4:25 PM Subject: [low dose naltrexone] Re: Towards a trial That's a good idea. I'll mention it to him when I see him again.I can't imagine he hasn't thought of it though.> > > Just a follow up. The recent feed back from the Italian group is > > that > > > the principle investigator will submit the LDN protocol to their > > > Chief for approval within a week or so. The Chief's approval can > > take > > > 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic > > > about a pilot study at the very least. > > > > > > Otherwise I will start all over again :-(.> > > > > > Keep tuned.> > > > > > Yash> > > > > > P.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Keep up the good work. We all appreciate it. Tom From Edmonton ----- Original Message ----- From: yashagrawal low dose naltrexone Sent: Monday, May 10, 2004 10:02 AM Subject: [low dose naltrexone] Towards a trial Just a follow up. The recent feed back from the Italian group is that the principle investigator will submit the LDN protocol to their Chief for approval within a week or so. The Chief's approval can take 2-3 weeks. IF (BIG IF) it is approved, I would be very optimistic about a pilot study at the very least. Otherwise I will start all over again :-(.Keep tuned.YashP.S. Am trying to contact redtruck99, anyone heard from her ?. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 The Univ. of Texas Southwestern is planning a LDN trial. Thanks for this go to redtruck99. Yash Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Huge thanks go to Yash for his support and advice on the survey, & his great info he has shared with the groups. And to the LDN community for taking the survey, & for all the advice on how to get better with LDN. It has saved my life! This is just the first glimmer of hope for an MS/LDN trial, we must keep at all fronts! /redtruck99 > The Univ. of Texas Southwestern is planning a LDN trial. Thanks for > this go to redtruck99. > > Yash Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 oo I'd like to hear some more on that! great news... On May 18, 2004, at 1:54 PM, low dose naltrexone wrote: > The Univ. of Texas Southwestern is planning a LDN trial. Thanks for > this go to redtruck99. > > Yash my personal page http://www.vrhotwires.com/Bill_Meikle/bill.html Quote Link to comment Share on other sites More sharing options...
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