Guest guest Posted May 23, 2007 Report Share Posted May 23, 2007 Nina, I just realized where I had seen good info about UCSF. There is research (still going on I think) there on Creatine monohydrate -- safety in children with neuromuscular disorders. Strober, MD is the contact. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 Hey Guys, Well, I go to UCSF on July 17th for more testing. I'll be seeing Dr. Ralph. I hope all goes well, since I live in Stockton, and am taking public transportation to the Med. center. (That's about 100 miles one way.) I'll let you know how it goes. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 Reading about the UCSF, does anyone remember about seven years ago on ABC's twenty-twenty show Dr. reported about research being done by Dr. Zamvil of UCSF. He did a study using mice that he would inject somehow with MS and they would develop it. Then using a statin drug the symptoms were reversed and the mice recovered. This is not a made up story I have better things to do. Couldn't believe it so I went a head and looked it up on the university's archives and sure enough it was there. A list of the studies. It didn't go into great detail but it did show that the study had gone on. Did anyone see it or have additional info.? Ann annf02@...Get a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 ANNFO2,I would like more info.on the subject please send the web site you got the info.on THANKS,DJ Re: [low dose naltrexone] UCSF Reading about the UCSF, does anyone remember about seven years ago on ABC's twenty-twenty show Dr. reported about research being done by Dr. Zamvil of UCSF. He did a study using mice that he would inject somehow with MS and they would develop it. Then using a statin drug the symptoms were reversed and the mice recovered. This is not a made up story I have better things to do. Couldn't believe it so I went a head and looked it up on the university's archives and sure enough it was there. A list of the studies. It didn't go into great detail but it did show that the study had gone on. Did anyone see it or have additional info.? Ann annf02@... Get a sneak peek of the all-new AOL.com. oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 DJ, I'm glad your asking. Like I said it was about seven years ago and I remember being glued to the TV, listening intently not wanting to miss a word. The doctor's name was remember after the film of the mice there was a moment that he spoke and sounded very hopeful that there would be a cure for MS. I'm doing a lot better with LDN for my MS but reading the E-mail last week about studies being done at UCSF brought this to mind about the statins, it was Zocor to be specific. Not on LDN at the time like a jerk I went to my general practitioner and asked for it. He naturally explained why I couldn't just start taking it. Remember reading that alone with the Zocor their had to be taken a Co Q10 to protect the heart at UCSF. Their is not to much more I can say but their are blind studies all over trying this. Right here in Jersey at the Gimbel, MS Center this has been tryed. But you know between you, me and the lamp post this will never come out easily. MS along with a lot of other auto immune diseases is a multibillion dollar industry. Let me know if anyone hears any thing. Thanks, Ann annf02@... Get a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Dr. Bruce A. Cree at the UCSF did prescribe LDN because he is on my LDN Prescribing Dr list...Unless he's changed his mind. Guess I'll need to start calling all the Dr's and talking to them or emailing them if I have an email address. May there be a miracle in YOUR life today and may you have the EYES to see it.From My Heart to Yours Love, Hugs & Blessings, CrystalLDN_Users Group OwnerDiagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years 8 months on LDN with Skip's Pharmacy.....No Relapses.....Crystal's MS,TM & LDN Websitewww.crystalsmstmldn.org LDN Website www.ldninfo.org Crystal's LDN Support GroupLDN_Users/ LDN MySpace www.myspace.com/low dose naltrexone LDN Help - International Users’ Resources www.ldn-help.com Low Dose Naltrexone Database http://ldn-database.carnebeach.com/ Up the Creek with a Paddle www.marybradleybooks.com Skip's Compounding Pharmacywww.skipspharmacy.com From: Joanna Rabkin <joannarabkin@...>low dose naltrexone Sent: Sunday, May 17, 2009 12:08:00 PMSubject: [low dose naltrexone] UCSF Hello. You have been asking about UCSF.I am a patient there in Multiple Sclerosis Center. I too have been interested in LDN.I am becoming very debilitated, and I think LDN may be helpful. I have been researching the treatment on the Net,and discovered that my neurologist, Bruce Cree,MD,PhD did a study last year,and was cautiously optimistic. When I asked him if I could get a script for it,I was denied. I suffer much pain among other things,and have been on pain meds last 7 years. What I must do is to get off them(opiates) for a month then "we will talk again." It is imperative one does not take opiates. Ciao Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 - Crystal Maybe it`s because theres pain meds involved to deal with first? I probably ranted and raved a bit too much but sometimes the battle seems so huge! Last time we went there just before xmas I gave our neuro the whole book of Cris`s that I`d painstakingly printed up (my printer nearly blew up!) and gave it to him as an early xmas present. I asked him to pass it around to his collegues when he`d finished but who knows if he even read it himself. Hope your baby is getting better now - horrible when our pets (kids!) are sick. Bev -- In low dose naltrexone , Crystals MS TM LDN Website <angelindisguise67@...> wrote: > > Dr. Bruce A. Cree at the UCSF did prescribe LDN because he is on my LDN Prescribing Dr list...Unless he's changed his mind. Guess I'll need to start calling all the Dr's and talking to them or emailing them if I have an email address. >  May there be a miracle in YOUR life today and may you have the EYES to see it. > > From My Heart to Yours > Love, Hugs & Blessings, > Crystal > LDN_Users Group Owner > > Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years 8 months on LDN with Skip's Pharmacy.....No Relapses..... > > > Crystal's MS,TM & LDN Website > www.crystalsmstmldn.org > > LDN Website > www.ldninfo.org > > Crystal's LDN Support Group > LDN_Users/ >  > LDN MySpace > www.myspace.com/low dose naltrexone >  LDN Help - International Users’ Resources > www.ldn-help.com > > Low Dose Naltrexone Database > http://ldn-database.carnebeach.com/ > > Up the Creek with a Paddle > www.marybradleybooks.com > > Skip's Compounding Pharmacy > www.skipspharmacy.com >  > > > > > ________________________________ > From: Joanna Rabkin <joannarabkin@...> > low dose naltrexone > Sent: Sunday, May 17, 2009 12:08:00 PM > Subject: [low dose naltrexone] UCSF > > > > > > Hello. > You have been asking about UCSF.I am a patient there > in Multiple Sclerosis Center. >  I too have been interested in LDN.I am becoming very > debilitated, and I think LDN may be helpful. >  I have been researching the treatment on the Net,and > discovered that my neurologist, Bruce Cree,MD,PhD > did a study last year,and was cautiously optimistic. > When I asked him if I could get a script for it,I was denied. > I suffer much pain among other things,and have been on > pain meds last 7 years. >  What I must do is to get off them(opiates) for a month > then " we will talk again. " > It is imperative one does not take opiates. > Ciao > Joanna > __.._,_.___ > Messages in this topic (6) Reply (via web post) | Start a new topic > Messages > > Change settings via the Web ( ID required) > Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional > Visit Your Group | Terms of Use | Unsubscribe > Recent Activity > *  90 > New Members > *  1 > New FilesVisit Your Group > Give Back > for Good > Get inspired > by a good cause. > Y! Toolbar > Get it Free! > easy 1-click access > to your groups. > > Start a group > in 3 easy steps. > Connect with others.. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 , I don't know where you are in Colorado, but in Broomfield is the most knowledgeable doctor I've ever met, and I've been to a lot. Her website is ivypainrehab.com. She has MS herself. She gladly prescribed LDN for me as well as helping me in many other ways. Robin On Sun, May 17, 2009 at 8:50 AM, D GRADISKA <allegria47@...> wrote: Oh, this is very interesting. I have an apt to see Dr. Engstrom at UCSF ! I wonder if this is your doc? Can you kindly tell me if you think UCSF has been helpful at all because I intend to fly all the way out from Colorado for tests etc as doctors here have done nothing - and I mean nothing for my PN. Would be very grateful to learn your thoughts about UCSF neurology.. BTW, what his Avonex? and how is this supposed to help PN? Thanks, Colorado [low dose naltrexone] Re: Dr Kita Seattle My husband`s neuro at UCSF is the same! Even though has been stable with no progression for four years, when I ask the neuro how his other (very few I think) patients are doing, he doesnt or wont say. Like he wont give it any weight at all - really annoying. If stumbles or isnt quite so fast of one the cognative tests he says " we might have to start him on Avonex " !! We just laugh and tell him we`ll see him in a year. - In low dose naltrexone , " anotherwildflower " <anotherwildflower@...> wrote: >> Hi!> > Just wondering about others with MS who see Dr Kita in Seattle and who are on LDN. I was trying to get her impression on how others were doing and she was very vague. Just curious how things are turning out for you. >------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Wow, Robin, thanks so much. I can't tell you how many docs I've seen. Its been so disheartening. This is great news - thanks again. Colorado [low dose naltrexone] Re: Dr Kita Seattle My husband`s neuro at UCSF is the same! Even though has been stable with no progression for four years, when I ask the neuro how his other (very few I think) patients are doing, he doesnt or wont say. Like he wont give it any weight at all - really annoying. If stumbles or isnt quite so fast of one the cognative tests he says "we might have to start him on Avonex"!! We just laugh and tell him we`ll see him in a year.- In low dose naltrexone , "anotherwildflower" <anotherwildflower@...> wrote:>> Hi!> > Just wondering about others with MS who see Dr Kita in Seattle and who are on LDN. I was trying to get her impression on how others were doing and she was very vague. Just curious how things are turning out for you.>------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I understood from Joanna's post that Dr Cree wouldn't prescribe LDN because she was on pain meds, then stated " get off the pain meds and call me in a month " . It would be irresposible of him to scribe LDN while she was on the meds for pain. > > Dr. Bruce A. Cree at the UCSF did prescribe LDN because he is on my LDN Prescribing Dr list...Unless he's changed his mind. Guess I'll need to start calling all the Dr's and talking to them or emailing them if I have an email address. >  May there be a miracle in YOUR life today and may you have the EYES to see it. > > From My Heart to Yours > Love, Hugs & Blessings, > Crystal > LDN_Users Group Owner > > Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years 8 months on LDN with Skip's Pharmacy.....No Relapses..... > > > Crystal's MS,TM & LDN Website > www.crystalsmstmldn.org > > LDN Website > www.ldninfo.org > > Crystal's LDN Support Group > LDN_Users/ >  > LDN MySpace > www.myspace.com/low dose naltrexone >  LDN Help - International Users’ Resources > www.ldn-help.com > > Low Dose Naltrexone Database > http://ldn-database.carnebeach.com/ > > Up the Creek with a Paddle > www.marybradleybooks.com > > Skip's Compounding Pharmacy > www.skipspharmacy.com >  > > > > > ________________________________ > From: Joanna Rabkin <joannarabkin@...> > low dose naltrexone > Sent: Sunday, May 17, 2009 12:08:00 PM > Subject: [low dose naltrexone] UCSF > > > > > > Hello. > You have been asking about UCSF.I am a patient there > in Multiple Sclerosis Center. >  I too have been interested in LDN.I am becoming very > debilitated, and I think LDN may be helpful. >  I have been researching the treatment on the Net,and > discovered that my neurologist, Bruce Cree,MD,PhD > did a study last year,and was cautiously optimistic. > When I asked him if I could get a script for it,I was denied. > I suffer much pain among other things,and have been on > pain meds last 7 years. >  What I must do is to get off them(opiates) for a month > then " we will talk again. " > It is imperative one does not take opiates. > Ciao > Joanna > __.._,_.___ > Messages in this topic (6) Reply (via web post) | Start a new topic > Messages > > Change settings via the Web ( ID required) > Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional > Visit Your Group | Terms of Use | Unsubscribe > Recent Activity > *  90 > New Members > *  1 > New FilesVisit Your Group > Give Back > for Good > Get inspired > by a good cause. > Y! Toolbar > Get it Free! > easy 1-click access > to your groups. > > Start a group > in 3 easy steps. > Connect with others.. > . > Quote Link to comment Share on other sites More sharing options...
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