Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 > > Hi, > > As I have said in the past I am taking part on the > UCSF trial on LDN. > Since 6/14/07 I am sure I am on LDN because of the > symptoms I have been experiencing such as dreams and a > bit light-headed. Perhaps also something funny is > going on w/ my appetite. Perhaps am not as hungry as I > had been ??? Not sure, but a coupe of people have > mentioned that I look as if I have lost weight. > > Anyway, overall, nothing dramatic & everything is very > tolerable. > > W.r.t how I feel overall, with the exception of the > first few days that I felt slightly better, I haven't > noticed any improvement so far. I know that many LDN > experts have mentioned that it takes time for LDN to > kick in. > > that's all for now - just for the records > > Theo Hi Theo, Glad to read you are using LDN for your medical problems. I've been on it for over two years for multiple sclerosis. Seems to have stopped disease progression. Would you mind sharing with us who these " many LDN experts " are and what they're telling you about LDN? Thank you. Art -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi Theo good luck with your trial.Of course it is natural to look for some changes when taking a new medication. I don't think or at least I hope that no one means to attack you. Please we are all very interested in the trial and your experiences. I started ldn aprox 1 month ago. I was looking for reduction in spasticity my most annoying symptom what I got was improvement in fatigue and heat sensitivity. The spasticity is a lttle tighter actually hopefully it will improve. I feel good and perkier. If all ldn does is stop me from getting any worse that is cool too. Of course when I read of others great improvements I hope for that too it's natural. Keep up the good work Best Wishes Barbara >From: Papillion <petaloudas@...> >Reply-low dose naltrexone >low dose naltrexone >Subject: Re: [low dose naltrexone] Re: A week & a half on LDN >Date: Mon, 25 Jun 2007 20:58:34 -0700 (PDT) > > > >Because now I am convinced that you ate distorting the >truth for reasons that you only know I am copying >exactly my very first posting for everyone else to >see. > > > >--------------------------------------------------- > > low dose naltrexone >From: " Papillion " <petaloudas@...> Add to >Address BookAdd to Address Book Add Mobile Alert > DomainKeys has confirmed that this message was >sent by . Learn more >Date: Wed, 13 Jun 2007 22:26:16 -0700 (PDT) >Subject: [low dose naltrexone] Starting on LDN > >Hi > >I have been on the LDN clinical trial at UCSF and >almost a week ago I completed the 1st phase. Both my >neuro as well as myself felt that i was on placebo >during the 1st phase. >According to my neuro, who is not w/ UCSF, I would >have felt the drug somehow had I started on LDN. > >Coming THU, in 1 day that is, will be switching to >possibly LDN. > >I will keep the list posted on my experiences. > >regards >theo > > > > > > > > > > > > > > >--- Bren <b63powell@...> wrote: > > > > > Papillion, > > > > Regardless of what doctor told you that you would > > feel something upon > > starting LDN is not the case. Some never see > > improvement in symptoms > > and some can only tell they are improving by the > > disease progression > > halting. The only way Marcie knows LDN is working > > is her last MRI > > showed no new lesions and no active lesions in the > > nearly 4 years > > she's been on LDN, Marcie has progressive MS. Your > > statement below is > > what's really got me, Art and Marcie concerned. > > > > Are you thinking LDN is doing nothing because you > > haven't felt a kick > > in? Who are these LDN experts you speak of? Too > > many people come in > > here expecting LDN to get rid of all their symptoms, > > that's not going > > to happen. As I said before, LDN's main purpose is > > to stop disease > > progression, not to improve symptoms. You may never > > feel a kick-in > > but that does not mean LDN is not working. > > > > Papillion wrote.... > > " I haven't noticed any improvement so far. I know > > that many LDN > > experts have mentioned that it takes time for LDN to > > kick in. " > > > > > > My main rant against the MS and LDN trials is that > > they are using LDN > > along with the interferons, it makes no sense unless > > one is trying to > > ruin LDN's chances. > > > > > > > > > > > > >_______________________________________________________________________________\ _____ >Looking for a deal? Find great prices on flights and hotels with >FareChase. >http://farechase./ _________________________________________________________________ Get a preview of Live Earth, the hottest event this summer - only on MSN http://liveearth.msn.com?source=msntaglineliveearthhm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi Barbara, I have total radar for anyone saying anything about heat intolerance!!! It is a MAJOR problem for me, and combined with vascular and neuropathic rosacea, it is very traumatizing. I cannot tolerate temps above 15 - 17 degrees Celsius (nothing above 60 - 62 F). It has totally devastated my life, since I cannot go to other's houses, public places, etc. I do not know if it is caused by autonomic nerve damage, or by HPA axis malfunction or what. It has been going on for over 6 years now, and has gotten progessively worse over the years. Can you tell me a little more specifically (so I can have hope!) in what ways your heat intolerance is improved? E.g. you can tolerate X degrees more in temp, if it affects excessive sweating if you have it, or flushing, or burning pain, etc. > > Hi Theo > good luck with your trial.Of course it is natural to look for some changes > when taking a new medication. I don't think or at least I hope that no one > means to attack you. Please we are all very interested in the trial and > your experiences. I started ldn aprox 1 month ago. I was looking for > reduction in spasticity my most annoying symptom what I got was improvement > in fatigue and heat sensitivity. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Theo, My question is...how will you know if or when LDN 'kicks in?' What improvements are typically to be expected, according to the experts whom are giving you your information? My L'hermettes did go away, and the 'MS Hug' is no longer around my ribs and waist. Still around the ankles and calves. Bladder control is SLIGHTLY better. After 3 years on LDN, I developed spasticity in my back. So, I know that it is not caused by LDN. The MRI results is absolutely all that I can say probably means that LDN is helping in some way. That took much longer than 16 weeks. In the beginning I, too, expected to see some sort of miracle. I had to be satisfied with slowing, or possibly halting disease progression. Also, in MY OPINION, we are the real experts...not a doctor who just knows what they are taught out of a book. No disrespect to the doctors, but if they lived in my shoes, they would be searching high and low like we are to find something that would help. Marcie Papillion <petaloudas@...> wrote: Because now I am convinced that you ate distorting thetruth for reasons that you only know I am copyingexactly my very first posting for everyone else tosee.---------------------------------------------------low dose naltrexone From: "Papillion" <petaloudas > Add toAddress BookAdd to Address Book Add Mobile Alert DomainKeys has confirmed that this message wassent by . Learn moreDate: Wed, 13 Jun 2007 22:26:16 -0700 (PDT)Subject: [low dose naltrexone] Starting on LDNHiI have been on the LDN clinical trial at UCSF andalmost a week ago I completed the 1st phase. Both myneuro as well as myself felt that i was on placeboduring the 1st phase.According to my neuro, who is not w/ UCSF, I wouldhave felt the drug somehow had I started on LDN.Coming THU, in 1 day that is, will be switching topossibly LDN.I will keep the list posted on my experiences.regardstheo--- Bren <b63powell > wrote:> > Papillion,> > Regardless of what doctor told you that you would> feel something upon > starting LDN is not the case. Some never see> improvement in symptoms > and some can only tell they are improving by the> disease progression > halting. The only way Marcie knows LDN is working> is her last MRI > showed no new lesions and no active lesions in the> nearly 4 years > she's been on LDN, Marcie has progressive MS. Your> statement below is > what's really got me, Art and Marcie concerned. > > Are you thinking LDN is doing nothing because you> haven't felt a kick > in? Who are these LDN experts you speak of? Too> many people come in > here expecting LDN to get rid of all their symptoms,> that's not going > to happen. As I said before, LDN's main purpose is> to stop disease > progression, not to improve symptoms. You may never> feel a kick-in > but that does not mean LDN is not working.> > Papillion wrote....> "I haven't noticed any improvement so far. I know> that many LDN > experts have mentioned that it takes time for LDN to> kick in." > > > My main rant against the MS and LDN trials is that> they are using LDN > along with the interferons, it makes no sense unless> one is trying to > ruin LDN's chances.> > > > __________________________________________________________Looking for a deal? Find great prices on flights and hotels with FareChase.http://farechase./ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi Art. I am glad you are doing fine and hope that I & others who are new on LDN will also do fine. The phrase of " many LDN experts " was refering to all the people who take LDN and specifically the people like yourself from this list. As you can imagine & know yourself, there is a big difference between having personal experience when taking LDN than by studying LDN. Hopefully this answered your question Theo --- Art Hansen <rtee54@...> wrote: > > > > > Hi, > > > > As I have said in the past I am taking part on the > > UCSF trial on LDN. > > Since 6/14/07 I am sure I am on LDN because of the > > symptoms I have been experiencing such as dreams > and a > > bit light-headed. Perhaps also something funny is > > going on w/ my appetite. Perhaps am not as hungry > as I > > had been ??? Not sure, but a coupe of people have > > mentioned that I look as if I have lost weight. > > > > Anyway, overall, nothing dramatic & everything is > very > > tolerable. > > > > W.r.t how I feel overall, with the exception of > the > > first few days that I felt slightly better, I > haven't > > noticed any improvement so far. I know that many > LDN > > experts have mentioned that it takes time for LDN > to > > kick in. > > > > that's all for now - just for the records > > > > Theo > > Hi Theo, > > Glad to read you are using LDN for your medical > problems. I've been > on it for over two years for multiple sclerosis. > Seems to have > stopped disease progression. > > Would you mind sharing with us who these " many LDN > experts " are and > what they're telling you about LDN? > > Thank you. > > Art > -- > > ________________________________________________________________________________\ ____ Choose the right car based on your needs. Check out Autos new Car Finder tool. http://autos./carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Marcie, Using this list, and the experiences of people that take LDN, I was looking for side-effects that LDN takers have described so that I would know myself when I am on LDN & when on placebo because of how the UCSF trial works. This is what I meant by " kick-in " ie the side-effects. thanks Theo --- Marcie <marcie_martin@...> wrote: > Theo, > > My question is...how will you know if or when LDN > 'kicks in?' What improvements are typically to be > expected, according to the experts whom are giving > you your information? > > My L'hermettes did go away, and the 'MS Hug' is no > longer around my ribs and waist. Still around the > ankles and calves. Bladder control is SLIGHTLY > better. After 3 years on LDN, I developed > spasticity in my back. So, I know that it is not > caused by LDN. > > The MRI results is absolutely all that I can say > probably means that LDN is helping in some way. > That took much longer than 16 weeks. > > In the beginning I, too, expected to see some sort > of miracle. I had to be satisfied with slowing, or > possibly halting disease progression. > > Also, in MY OPINION, we are the real experts...not > a doctor who just knows what they are taught out of > a book. No disrespect to the doctors, but if they > lived in my shoes, they would be searching high and > low like we are to find something that would help. > > Marcie > > > Papillion <petaloudas@...> wrote: > > > Because now I am convinced that you ate distorting > the > truth for reasons that you only know I am copying > exactly my very first posting for everyone else to > see. > > --------------------------------------------------- > > low dose naltrexone > From: " Papillion " <petaloudas@...> Add to > Address BookAdd to Address Book Add Mobile Alert > DomainKeys has confirmed that this message > was > sent by . Learn more > Date: Wed, 13 Jun 2007 22:26:16 -0700 (PDT) > Subject: [low dose naltrexone] Starting on LDN > > Hi > > I have been on the LDN clinical trial at UCSF and > almost a week ago I completed the 1st phase. Both my > neuro as well as myself felt that i was on placebo > during the 1st phase. > According to my neuro, who is not w/ UCSF, I would > have felt the drug somehow had I started on LDN. > > Coming THU, in 1 day that is, will be switching to > possibly LDN. > > I will keep the list posted on my experiences. > > regards > theo > > --- Bren <b63powell@...> wrote: > > > > > Papillion, > > > > Regardless of what doctor told you that you would > > feel something upon > > starting LDN is not the case. Some never see > > improvement in symptoms > > and some can only tell they are improving by the > > disease progression > > halting. The only way Marcie knows LDN is working > > is her last MRI > > showed no new lesions and no active lesions in the > > nearly 4 years > > she's been on LDN, Marcie has progressive MS. Your > > statement below is > > what's really got me, Art and Marcie concerned. > > > > Are you thinking LDN is doing nothing because you > > haven't felt a kick > > in? Who are these LDN experts you speak of? Too > > many people come in > > here expecting LDN to get rid of all their > symptoms, > > that's not going > > to happen. As I said before, LDN's main purpose is > > to stop disease > > progression, not to improve symptoms. You may > never > > feel a kick-in > > but that does not mean LDN is not working. > > > > Papillion wrote.... > > " I haven't noticed any improvement so far. I know > > that many LDN > > experts have mentioned that it takes time for LDN > to > > kick in. " > > > > > > My main rant against the MS and LDN trials is that > > they are using LDN > > along with the interferons, it makes no sense > unless > > one is trying to > > ruin LDN's chances. > > > > > > > > > > __________________________________________________________ > Looking for a deal? Find great prices on flights and > hotels with FareChase. > http://farechase./ > > > > ________________________________________________________________________________\ ____ Never miss an email again! Toolbar alerts you the instant new Mail arrives. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi Barbara, Perhaps it was just a misunderstanding. End of story as far as I am concerned. I am convinced that I do take LDN by now based on the side effects described by other LDN takers (avoiding the word experts) and all I can say so far is that I do not feel any worse. My main MS symptom is the huge numbness that I have on both of my hands since 2001 pretty much and also the paresthisia of tightness that I feel north of my abdominals. I hope LDN continues working for you. I believe that it will help me too somehow that's why I volunteered on the trial. Regards Theo --- barbara bray wilde <bhbwinchina@...> wrote: > Hi Theo > good luck with your trial.Of course it is natural to > look for some changes > when taking a new medication. I don't think or at > least I hope that no one > means to attack you. Please we are all very > interested in the trial and > your experiences. I started ldn aprox 1 month ago. > I was looking for > reduction in spasticity my most annoying symptom > what I got was improvement > in fatigue and heat sensitivity. The spasticity is a > lttle tighter actually > hopefully it will improve. I feel good and perkier. > If all ldn does is stop > me from getting any worse that is cool too. Of > course when I read of others > great improvements I hope for that too it's natural. > Keep up the good work > Best Wishes > Barbara > > > >From: Papillion <petaloudas@...> > >Reply-low dose naltrexone > >low dose naltrexone > >Subject: Re: [low dose naltrexone] Re: A week & a > half on LDN > >Date: Mon, 25 Jun 2007 20:58:34 -0700 (PDT) > > > > > > > >Because now I am convinced that you ate distorting > the > >truth for reasons that you only know I am copying > >exactly my very first posting for everyone else to > >see. > > > > > > > >--------------------------------------------------- > > > > low dose naltrexone > >From: " Papillion " <petaloudas@...> Add to > >Address BookAdd to Address Book Add Mobile Alert > > DomainKeys has confirmed that this message > was > >sent by . Learn more > >Date: Wed, 13 Jun 2007 22:26:16 -0700 (PDT) > >Subject: [low dose naltrexone] Starting on LDN > > > >Hi > > > >I have been on the LDN clinical trial at UCSF and > >almost a week ago I completed the 1st phase. Both > my > >neuro as well as myself felt that i was on placebo > >during the 1st phase. > >According to my neuro, who is not w/ UCSF, I would > >have felt the drug somehow had I started on LDN. > > > >Coming THU, in 1 day that is, will be switching to > >possibly LDN. > > > >I will keep the list posted on my experiences. > > > >regards > >theo > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >--- Bren <b63powell@...> wrote: > > > > > > > > Papillion, > > > > > > Regardless of what doctor told you that you > would > > > feel something upon > > > starting LDN is not the case. Some never see > > > improvement in symptoms > > > and some can only tell they are improving by the > > > disease progression > > > halting. The only way Marcie knows LDN is > working > > > is her last MRI > > > showed no new lesions and no active lesions in > the > > > nearly 4 years > > > she's been on LDN, Marcie has progressive MS. > Your > > > statement below is > > > what's really got me, Art and Marcie concerned. > > > > > > Are you thinking LDN is doing nothing because > you > > > haven't felt a kick > > > in? Who are these LDN experts you speak of? > Too > > > many people come in > > > here expecting LDN to get rid of all their > symptoms, > > > that's not going > > > to happen. As I said before, LDN's main purpose > is > > > to stop disease > > > progression, not to improve symptoms. You may > never > > > feel a kick-in > > > but that does not mean LDN is not working. > > > > > > Papillion wrote.... > > > " I haven't noticed any improvement so far. I > know > > > that many LDN > > > experts have mentioned that it takes time for > LDN to > > > kick in. " > > > > > > > > > My main rant against the MS and LDN trials is > that > > > they are using LDN > > > along with the interferons, it makes no sense > unless > > > one is trying to > > > ruin LDN's chances. > > > > > > > > > > > > > > > > > > > > > >_______________________________________________________________________________\ _____ > >Looking for a deal? Find great prices on flights > and hotels with > >FareChase. > >http://farechase./ > > _________________________________________________________________ > Get a preview of Live Earth, the hottest event this > summer - only on MSN > http://liveearth.msn.com?source=msntaglineliveearthhm > > ________________________________________________________________________________\ ____ Shape in your own image. Join our Network Research Panel today! http://surveylink./gmrs/_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Theo, The main side effect I have heard of is that for some people LDN interferes with the ability to sleep and for others it gives wild dreams. I had none of these during my initial 7 weeks on 3 mg/d and the one week on 4.5 mg/d. I would not mind dreaming, because now I go to sleep around 10 PM and wake up 8 hrs later without having any memory of what happened; it is a lost time! Arjan Gijsman -----Original Message----- From: low dose naltrexone [mailto:low dose naltrexone ]On Behalf Of Papillion Sent: Tuesday, June 26, 2007 11:52 AM To: low dose naltrexone Subject: Re: [low dose naltrexone] Re: A week & a half on LDN Marcie, Using this list, and the experiences of people that take LDN, I was looking for side-effects that LDN takers have described so that I would know myself when I am on LDN & when on placebo because of how the UCSF trial works. This is what I meant by " kick-in " ie the side-effects. thanks Theo --- Marcie <marcie_martinsbcglobal (DOT) net> wrote: > Theo, > > My question is...how will you know if or when LDN > 'kicks in?' What improvements are typically to be > expected, according to the experts whom are giving > you your information? > > My L'hermettes did go away, and the 'MS Hug' is no > longer around my ribs and waist. Still around the > ankles and calves. Bladder control is SLIGHTLY > better. After 3 years on LDN, I developed > spasticity in my back. So, I know that it is not > caused by LDN. > > The MRI results is absolutely all that I can say > probably means that LDN is helping in some way. > That took much longer than 16 weeks. > > In the beginning I, too, expected to see some sort > of miracle. I had to be satisfied with slowing, or > possibly halting disease progression. > > Also, in MY OPINION, we are the real experts...not > a doctor who just knows what they are taught out of > a book. No disrespect to the doctors, but if they > lived in my shoes, they would be searching high and > low like we are to find something that would help. > > Marcie > > > Papillion <petaloudas > wrote: > > > Because now I am convinced that you ate distorting > the > truth for reasons that you only know I am copying > exactly my very first posting for everyone else to > see. > > --------------------------------------------------- > > low dose naltrexone > From: " Papillion " <petaloudas > Add to > Address BookAdd to Address Book Add Mobile Alert > DomainKeys has confirmed that this message > was > sent by . Learn more > Date: Wed, 13 Jun 2007 22:26:16 -0700 (PDT) > Subject: [low dose naltrexone] Starting on LDN > > Hi > > I have been on the LDN clinical trial at UCSF and > almost a week ago I completed the 1st phase. Both my > neuro as well as myself felt that i was on placebo > during the 1st phase. > According to my neuro, who is not w/ UCSF, I would > have felt the drug somehow had I started on LDN. > > Coming THU, in 1 day that is, will be switching to > possibly LDN. > > I will keep the list posted on my experiences. > > regards > theo > > --- Bren <b63powell > wrote: > > > > > Papillion, > > > > Regardless of what doctor told you that you would > > feel something upon > > starting LDN is not the case. Some never see > > improvement in symptoms > > and some can only tell they are improving by the > > disease progression > > halting. The only way Marcie knows LDN is working > > is her last MRI > > showed no new lesions and no active lesions in the > > nearly 4 years > > she's been on LDN, Marcie has progressive MS. Your > > statement below is > > what's really got me, Art and Marcie concerned. > > > > Are you thinking LDN is doing nothing because you > > haven't felt a kick > > in? Who are these LDN experts you speak of? Too > > many people come in > > here expecting LDN to get rid of all their > symptoms, > > that's not going > > to happen. As I said before, LDN's main purpose is > > to stop disease > > progression, not to improve symptoms. You may > never > > feel a kick-in > > but that does not mean LDN is not working. > > > > Papillion wrote.... > > " I haven't noticed any improvement so far. I know > > that many LDN > > experts have mentioned that it takes time for LDN > to > > kick in. " > > > > > > My main rant against the MS and LDN trials is that > > they are using LDN > > along with the interferons, it makes no sense > unless > > one is trying to > > ruin LDN's chances. > > > > > > > > > > __________________________________________________________ > Looking for a deal? Find great prices on flights and > hotels with FareChase. > http://farechase./ > > > > __________________________________________________________ Never miss an email again! Toolbar alerts you the instant new Mail arrives. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Does taking hydrocodone for pain 4-6 hours away from LDN treatment block the effective ness of LDN treatment? Anyone know? ___________________ Skyler Ditchfield Skyler.Ditchfield@... From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Papillion Sent: Tuesday, June 26, 2007 9:46 AM To: low dose naltrexone Subject: Re: [low dose naltrexone] Re: A week & a half on LDN Hi Art. I am glad you are doing fine and hope that I & others who are new on LDN will also do fine. The phrase of " many LDN experts " was refering to all the people who take LDN and specifically the people like yourself from this list. As you can imagine & know yourself, there is a big difference between having personal experience when taking LDN than by studying LDN. Hopefully this answered your question Theo --- Art Hansen <rtee54 > wrote: > > > > > Hi, > > > > As I have said in the past I am taking part on the > > UCSF trial on LDN. > > Since 6/14/07 I am sure I am on LDN because of the > > symptoms I have been experiencing such as dreams > and a > > bit light-headed. Perhaps also something funny is > > going on w/ my appetite. Perhaps am not as hungry > as I > > had been ??? Not sure, but a coupe of people have > > mentioned that I look as if I have lost weight. > > > > Anyway, overall, nothing dramatic & everything is > very > > tolerable. > > > > W.r.t how I feel overall, with the exception of > the > > first few days that I felt slightly better, I > haven't > > noticed any improvement so far. I know that many > LDN > > experts have mentioned that it takes time for LDN > to > > kick in. > > > > that's all for now - just for the records > > > > Theo > > Hi Theo, > > Glad to read you are using LDN for your medical > problems. I've been > on it for over two years for multiple sclerosis. > Seems to have > stopped disease progression. > > Would you mind sharing with us who these " many LDN > experts " are and > what they're telling you about LDN? > > Thank you. > > Art > -- > > __________________________________________________________ Choose the right car based on your needs. Check out Autos new Car Finder tool. http://autos./carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 > > Does taking hydrocodone for pain 4-6 hours away from LDN treatment block > the effective ness of LDN treatment? > > > > Anyone know? =========== If anything got blocked it would be the pain med, not the LDN. If you have been taking hydrocodone to where a dependency has occurred then LDN can block the effects and put you into withdrawal. Some have taken periodic narcotic meds during the day with no problem, just be careful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi Arjan, I have had dreams and like you, don't mind at all, but never had and issues to fall asleep. Quite the opposite actually. I sleep fantastic ever since last week Thanks Theo --- " Gijsman, Arjan J. (CIAT) " <A.GIJSMAN@...> wrote: > Theo, > > > The main side effect I have heard of is that for > some people LDN interferes with the ability to sleep > and for others it gives wild dreams. I had none of > these during my initial 7 weeks on 3 mg/d and the > one week on 4.5 mg/d. I would not mind dreaming, > because now I go to sleep around 10 PM and wake up 8 > hrs later without having any memory of what > happened; it is a lost time! > > Arjan Gijsman > > > [low dose naltrexone] Starting on LDN > > > > Hi > > > > I have been on the LDN clinical trial at UCSF and > > almost a week ago I completed the 1st phase. Both > my > > neuro as well as myself felt that i was on placebo > > during the 1st phase. > > According to my neuro, who is not w/ UCSF, I would > > have felt the drug somehow had I started on LDN. > > > > Coming THU, in 1 day that is, will be switching to > > possibly LDN. > > > > I will keep the list posted on my experiences. > > > > regards > > theo > > > > --- Bren < b63powell (DOT) > <mailto:b63powell%40> com> wrote: > > > > > > > > Papillion, > > > > > > Regardless of what doctor told you that you > would > > > feel something upon > > > starting LDN is not the case. Some never see > > > improvement in symptoms > > > and some can only tell they are improving by the > > > disease progression > > > halting. The only way Marcie knows LDN is > working > > > is her last MRI > > > showed no new lesions and no active lesions in > the > > > nearly 4 years > > > she's been on LDN, Marcie has progressive MS. > Your > > > statement below is > > > what's really got me, Art and Marcie concerned. > > > > > > Are you thinking LDN is doing nothing because > you > > > haven't felt a kick > > > in? Who are these LDN experts you speak of? Too > > > many people come in > > > here expecting LDN to get rid of all their > > symptoms, > > > that's not going > > > to happen. As I said before, LDN's main purpose > is > > > to stop disease > > > progression, not to improve symptoms. You may > > never > > > feel a kick-in > > > but that does not mean LDN is not working. > > > > > > Papillion wrote.... > > > " I haven't noticed any improvement so far. I > know > > > that many LDN > > > experts have mentioned that it takes time for > LDN > > to > > > kick in. " > > > > > > > > > My main rant against the MS and LDN trials is > that > > > they are using LDN > > > along with the interferons, it makes no sense > > unless > > > one is trying to > > > ruin LDN's chances. > > > > > > > > > > > > > > > > > __________________________________________________________ > > Looking for a deal? Find great prices on flights > and > > hotels with FareChase. > > http://farechase. <http://farechase./> > / > > > > > > > > > > __________________________________________________________ > Never miss an email again! > Toolbar alerts you the instant new Mail > arrives. > http://tools. > <http://tools.search./toolbar/features/mail/> > search./toolbar/features/mail/ > === message truncated === ________________________________________________________________________________\ ____ oneSearch: Finally, mobile search that gives answers, not web links. http://mobile./mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 I am on the LDN for crohns 4 days now. I need pain meds sometimes, and just wanted to see if I used them on the time inbetween the lDN, that it wouldn’t make the LDN not be effective for my crohns ___________________ Skyler Ditchfield Skyler.Ditchfield@... From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Bren Sent: Tuesday, June 26, 2007 10:50 AM To: low dose naltrexone Subject: [low dose naltrexone] Re: A week & a half on LDN > > Does taking hydrocodone for pain 4-6 hours away from LDN treatment block > the effective ness of LDN treatment? > > > > Anyone know? =========== If anything got blocked it would be the pain med, not the LDN. If you have been taking hydrocodone to where a dependency has occurred then LDN can block the effects and put you into withdrawal. Some have taken periodic narcotic meds during the day with no problem, just be careful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 If you take the 2 together they will work against each other and you won't get the best effectiveness from either one. Here is a list of what NOT to take with LDN and I have also attached a chart of drugs that may interact with LDN that i got from Skip's Pharmacy - Do not take Naltrexone with any of the following without first talking to your doctor: • disulfiram (Antabuse);• thioridazine (Mellaril);• buprenorphine (Buprenex, Subutrex);• codeine (Tylenol with Codeine, and other brand names);• hydrocodone (Lorcet, Lortab, Vicodin, Vicoprofen, and otherbrand names);• hydromorphone (Dilaudid);• levorphanol (Levo-Dromoran);• meperidine (Demerol);• methadone (Dolophine, Methadose);• morphine (Kadian, MS Contin, MSIR, OMS, Roxanol, Oramorph SR,and other brand names);• oxycodone (M-Oxy, OxyContin, OxyIR, Roxicodone, Percocet,Percodan, and other brand names);• oxymorphone (Numorphan); or• propoxyphene (Darvon, and other brand names). · Novantrone · Rebif · Avonex · Betaseron · Tysabri · Chemo's, I believe that steroids, short term, are ok with LDN. Dr. Skip As per Skip’s Compounding Pharmacy in Boca Raton, Florida “Darvocet” is one of the very few that You Can Take with LDN without it canceling out the LDN…… Love & Blessings, Crystal LDN_Users Group Owner Crystal's MS,TM & LDN Website Crystal's LDN Support Group MS & TM Spouse & Caregiver Support Group Crystal's MySpace Re: [low dose naltrexone] Re: A week & a half on LDN Hi Art.I am glad you are doing fine and hope that I & otherswho are new on LDN will also do fine.The phrase of "many LDN experts" was refering to allthe people who take LDN and specifically the peoplelike yourself from this list. As you can imagine & know yourself, there is a big difference betweenhaving personal experience when taking LDN than bystudying LDN.Hopefully this answered your questionTheo--- Art Hansen <rtee54 (DOT) com> wrote:> > >> > Hi,> > > > As I have said in the past I am taking part on the> > UCSF trial on LDN.> > Since 6/14/07 I am sure I am on LDN because of the> > symptoms I have been experiencing such as dreams> and a> > bit light-headed. Perhaps also something funny is> > going on w/ my appetite. Perhaps am not as hungry> as I> > had been ??? Not sure, but a coupe of people have> > mentioned that I look as if I have lost weight.> > > > Anyway, overall, nothing dramatic & everything is> very> > tolerable.> > > > W.r.t how I feel overall, with the exception of> the> > first few days that I felt slightly better, I> haven't> > noticed any improvement so far. I know that many> LDN> > experts have mentioned that it takes time for LDN> to> > kick in.> > > > that's all for now - just for the records> > > > Theo> > Hi Theo,> > Glad to read you are using LDN for your medical> problems. I've been > on it for over two years for multiple sclerosis.> Seems to have > stopped disease progression.> > Would you mind sharing with us who these "many LDN> experts" are and > what they're telling you about LDN?> > Thank you.> > Art> --> > ____________ _________ _________ _________ _________ _________ _Choose the right car based on your needs. Check out Autos new Car Finder tool.http://autos. / carfinder/ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 ...and what is PLS please? Thanks n x > > Theo, > I've been on ldn for 7 mo, 3mg (I have PLS). I had great improvements, even with my allergies! > This past month I've had a lot of abnormal family stress. It has set me back physically with my pls. Do whatever it takes to avoid the stress. Good luck on the ldn, take care. > Cira, PLS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 The word 'allergies' caught my eye! What allergies would you say you had/have? and how would you say they've improved? Very interesting indeed n (UK) xx > > Theo, > I've been on ldn for 7 mo, 3mg (I have PLS). I had great improvements, even with my allergies! > This past month I've had a lot of abnormal family stress. It has set me back physically with my pls. Do whatever it takes to avoid the stress. Good luck on the ldn, take care. > Cira, PLS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 I was under the impression that no narcortics should be taken with ldn. I assume lots of pain meds are. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Skyler DitchfieldSent: Tuesday, June 26, 2007 3:25 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: A week & a half on LDN I am on the LDN for crohns 4 days now. I need pain meds sometimes, and just wanted to see if I used them on the time inbetween the lDN, that it wouldn’t make the LDN not be effective for my crohns ___________________ Skyler Ditchfield Skyler.DitchfieldGmail From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of BrenSent: Tuesday, June 26, 2007 10:50 AMlow dose naltrexone Subject: [low dose naltrexone] Re: A week & a half on LDN >> Does taking hydrocodone for pain 4-6 hours away from LDN treatment block> the effective ness of LDN treatment?> > > > Anyone know?===========If anything got blocked it would be the pain med, not the LDN. If you have been taking hydrocodone to where a dependency has occurred then LDN can block the effects and put you into withdrawal. Some have taken periodic narcotic meds during the day with no problem, just be careful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 I would not recomend taking hydrocodene or any narcotics while on the LDN [low dose naltrexone] Re: A week & a half on LDN >> Does taking hydrocodone for pain 4-6 hours away from LDN treatment block> the effective ness of LDN treatment?> > > > Anyone know?===========If anything got blocked it would be the pain med, not the LDN. If you have been taking hydrocodone to where a dependency has occurred then LDN can block the effects and put you into withdrawal. Some have taken periodic narcotic meds during the day with no problem, just be careful. Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Theo, I know you know this, but I'll repeat it! LDN works differently in individuals. Some see great results/improvements right away, some see nothing, but that doesn't mean it's not working. The only way to know if it 'kicks in' is if you're one of the lucky ones who gets dramatic results or if there is no change in an MRI after at least a year. And even the MRI is not conclusive. I have been taking LDN for nearly 4 years, but I can't say that I'm exactly where I was 4 years ago. Now, I was already in the wheelchair then, so it's hard to say. I want to believe that what seems like progression is really caused by lack of motion. But, when you can't move what do you do? I just believe that LDN is my best chance, not counting Divine Intervention! Marcie Papillion <petaloudas@...> wrote: Marcie,Using this list, and the experiences of people thattake LDN, I was looking for side-effects that LDNtakers have described so that I would know myself whenI am on LDN & when on placebo because of how the UCSFtrial works.This is what I meant by "kick-in" ie the side-effects.thanksTheo--- Marcie <marcie_martinsbcglobal (DOT) net> wrote:> Theo,> > My question is...how will you know if or when LDN> 'kicks in?' What improvements are typically to be> expected, according to the experts whom are giving> you your information?> > My L'hermettes did go away, and the 'MS Hug' is no> longer around my ribs and waist. Still around the> ankles and calves. Bladder control is SLIGHTLY> better. After 3 years on LDN, I developed> spasticity in my back. So, I know that it is not> caused by LDN.> > The MRI results is absolutely all that I can say> probably means that LDN is helping in some way. > That took much longer than 16 weeks.> > In the beginning I, too, expected to see some sort> of miracle. I had to be satisfied with slowing, or> possibly halting disease progression.> > Also, in MY OPINION, we are the real experts...not> a doctor who just knows what they are taught out of> a book. No disrespect to the doctors, but if they> lived in my shoes, they would be searching high and> low like we are to find something that would help.> > Marcie> > > Papillion <petaloudas > wrote:> > > Because now I am convinced that you ate distorting> the> truth for reasons that you only know I am copying> exactly my very first posting for everyone else to> see.> > ---------------------------------------------------> > low dose naltrexone > From: "Papillion" <petaloudas > Add to> Address BookAdd to Address Book Add Mobile Alert> DomainKeys has confirmed that this message> was> sent by . Learn more> Date: Wed, 13 Jun 2007 22:26:16 -0700 (PDT)> Subject: [low dose naltrexone] Starting on LDN> > Hi> > I have been on the LDN clinical trial at UCSF and> almost a week ago I completed the 1st phase. Both my> neuro as well as myself felt that i was on placebo> during the 1st phase.> According to my neuro, who is not w/ UCSF, I would> have felt the drug somehow had I started on LDN.> > Coming THU, in 1 day that is, will be switching to> possibly LDN.> > I will keep the list posted on my experiences.> > regards> theo> > --- Bren <b63powell > wrote:> > > > > Papillion,> > > > Regardless of what doctor told you that you would> > feel something upon > > starting LDN is not the case. Some never see> > improvement in symptoms > > and some can only tell they are improving by the> > disease progression > > halting. The only way Marcie knows LDN is working> > is her last MRI > > showed no new lesions and no active lesions in the> > nearly 4 years > > she's been on LDN, Marcie has progressive MS. Your> > statement below is > > what's really got me, Art and Marcie concerned. > > > > Are you thinking LDN is doing nothing because you> > haven't felt a kick > > in? Who are these LDN experts you speak of? Too> > many people come in > > here expecting LDN to get rid of all their> symptoms,> > that's not going > > to happen. As I said before, LDN's main purpose is> > to stop disease > > progression, not to improve symptoms. You may> never> > feel a kick-in > > but that does not mean LDN is not working.> > > > Papillion wrote....> > "I haven't noticed any improvement so far. I know> > that many LDN > > experts have mentioned that it takes time for LDN> to> > kick in." > > > > > > My main rant against the MS and LDN trials is that> > they are using LDN > > along with the interferons, it makes no sense> unless> > one is trying to > > ruin LDN's chances.> > > > > > > > > >__________________________________________________________> Looking for a deal? Find great prices on flights and> hotels with FareChase.> http://farechase./> > > > __________________________________________________________Never miss an email again! Toolbar alerts you the instant new Mail arrives.http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi All, No disrespect but, how do you know so much about ldn and what works and doesn't. My memory comes and goes and I don't remember any previous posts about where you gathered your information. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Ann CherrySent: Tuesday, June 26, 2007 4:38 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: A week & a half on LDN I was under the impression that no narcortics should be taken with ldn. I assume lots of pain meds are. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Skyler DitchfieldSent: Tuesday, June 26, 2007 3:25 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: A week & a half on LDN I am on the LDN for crohns 4 days now. I need pain meds sometimes, and just wanted to see if I used them on the time inbetween the lDN, that it wouldn’t make the LDN not be effective for my crohns ___________________ Skyler Ditchfield Skyler.DitchfieldGmail From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of BrenSent: Tuesday, June 26, 2007 10:50 AMlow dose naltrexone Subject: [low dose naltrexone] Re: A week & a half on LDN >> Does taking hydrocodone for pain 4-6 hours away from LDN treatment block> the effective ness of LDN treatment?> > > > Anyone know?===========If anything got blocked it would be the pain med, not the LDN. If you have been taking hydrocodone to where a dependency has occurred then LDN can block the effects and put you into withdrawal. Some have taken periodic narcotic meds during the day with no problem, just be careful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 > > Hi All, > > No disrespect but, how do you know so much about ldn and what works > and doesn't. My memory comes and goes and I don't remember any previous > posts about where you gathered your information. > You should visit 's website and read her LDN story. http://ldn.proboards3.com/index.cgi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 > > I am on the LDN for crohns 4 days now. I need pain meds sometimes, and just > wanted to see if I used them on the time inbetween the lDN, that it wouldn't > make the LDN not be effective for my crohns > Skyler Ditchfield ========== If you haven't developed a dependency to the hydrocodone the only thing that might happen is the LDN could make the med less effective. Now if you were to take it say after you had had major surgery and needed the full effects of a narcotic then you would not take LDN during that time frame. Never take LDN if you have developed a dependency to a narcotic unless you've been off the narcotic for 14 days. Taking LDN when one is dependent on a narcotic can be life- threatening. There are people on this forum who have taken a narcotic from time to time, like during the day and had no problems between their LDN and narcotic med. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 > > Hi All, > > No disrespect but, how do you know so much about ldn and what works > and doesn't. My memory comes and goes and I don't remember any previous > posts about where you gathered your information. > =========== Well, for starters come July 11, 2007 I'll have been on LDN 4 years. A year after I started LDN my mom was dx'd with breast cancer and she and I set up a very long phone conference with Dr. Bihari, around 90 minutes and I asked every possible question I could think of. I've had other talks with Bihari since the initial one and Bill from Bihari's office, he and I used to talk a lot and Bill was a wealth of info. My mom refused chemo under Bihari's advice and did the LDN. In 2005 my grandma was put on LDN for cancer and advanced Alzheimer's. Some of my info comes from my talks with Bihari or Bill, Dr. Bob Lawrence, Dr. Jaquelyn McCandless and other LDN researchers, from reading other's experiences on different LDN forums and my family's experiences with the drug, research materials from those researching the drug, etc. Like Art mentioned I do have my own LDN website. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 n,PLS is a motor neuron disease ( such as ALS ) and affects the voluntary muscles, legs, arms, speech, swallowing etc. It is not fatal like ALS. It is so rare that doctors really don't have knowledge on treatment. My symptoms started about 9 yrs ago, very minimal. About 3 yrs ago they started to accelerate and I was dx with PLS at the MAYO clinic. I wish I knew about LDN at that time. If I had, I feel I wouldn't be on a walker full time now. I've been on LDN for 7 months and it has done wonders for me.Cira Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 n..about the allergies...I suffered from allergies to grass, certain trees etc. Here in Arizona its year round not seasonal. My allergy problems caused repeated sinus infections and even had sinus surgery several years ago. I also had cronic coughing and repeated bronchial infections. I was always sick!!! I have been healthy since on LDN. No allergy reactions, no coughing no anything for 7 mo. I'm off antihistimines, nasal sprays etc. My PCP is amazed. Had a physical last month and all blood work was better than previous years. I feel great...Cira Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Hi to all, About allergies. Have been on LDN since March 7th for MS. My slight allergies all cleared up after I gave up dairy and gluten two years ago. Was wondering if diet had anything to do with your allergies disappearing? Best regards, >From: " ciracole@... " <ciracole@...> >Reply-low dose naltrexone >low dose naltrexone >Subject: [low dose naltrexone] Re: A week & a half on LDN >Date: Wed, 27 Jun 2007 02:36:28 GMT > >n..about the allergies...I suffered from allergies to grass, certain >trees etc. Here in Arizona its year round not seasonal. My allergy >problems caused repeated sinus infections and even had sinus surgery >several years ago. I also had cronic coughing and repeated bronchial >infections. I was always sick!!! I have been healthy since on LDN. No >allergy reactions, no coughing no anything for 7 mo. I'm off >antihistimines, nasal sprays etc. My PCP is amazed. Had a physical last >month and all blood work was better than previous years. I feel >great...Cira _________________________________________________________________ Le climat a besoin de vous! Luttez contre le dérèglement: Allez au concert http://liveearthsos.msn.com/Hub.aspx?mkt=fr-ch Quote Link to comment Share on other sites More sharing options...
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