Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 <<<<From the 19 years before I was diagnosed with Lyme, I learned through various CFS resources, mainly Dr. Cheney in California, that the way to cure your problem is 2 mg Klonopin to start. >>>>> Guess I don't fit this treatment protocol..........Klonopin is very sedating, but often continues it's sedative qualities into the next day. Can't teach high school students in a sedated state. Conniek nwnj When our bodies & minds are out of balance...........we suffer! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 you can try melatonine.it might go over after some time. > > Have been on 3mg for three weeks with occasional epam to help > sleep. Four days ago went onto 4.5mg and have been waking up at 4.30 > A.M. each morning. As I have CFS/arthritis sleep is paramount. I don't > want to continue taking epam and would like advice on how long I > should persist with 4.5mg. For interest when I began on 3mg I I took a > 5mg epam at the same time and slept for 8 hours, first time in years. > > Many thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 HI, I just thought I'd like to share my experience with you and wonder if anyone else has a similar story. I decided to come off LDN after taking it for 3 years. I had, for the last year, had dreadful trouble sleeping - waking up every 2 hrs during the night. I tried taking a lower dose but that didn't help. I have a reasonably mild form of progressive MS mainly suffering with severe fatigue and sensation problems. I must admit that the fatigue never improved whilst on LDN and the sleep disturbance certainly didn't help. I stopped taking it in mid November and so far haven't noticed any adverse effects. I am however sleeping very much better!! I do hope I've done the right thing......... Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Are you on any kind of other MS therapy? Copaxone maybe, since ending LDN? I worry that by not being on any therapy at all your MS might be progressing.Just concerned.- KenFrom: helen43765 <wenderott@...>low dose naltrexone Sent: Monday, January 26, 2009 5:32:38 PMSubject: [low dose naltrexone] Sleep disturbance HI, I just thought I'd like to share my experience with you and wonder if anyone else has a similar story. I decided to come off LDN after taking it for 3 years. I had, for the last year, had dreadful trouble sleeping - waking up every 2 hrs during the night. I tried taking a lower dose but that didn't help. I have a reasonably mild form of progressive MS mainly suffering with severe fatigue and sensation problems. I must admit that the fatigue never improved whilst on LDN and the sleep disturbance certainly didn't help. I stopped taking it in mid November and so far haven't noticed any adverse effects. I am however sleeping very much better!! I do hope I've done the right thing....... .. Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi Helen, Sounds different as most people, myself included, end up sleeping much better on LDN (after possibly some initial insomnia for a few). Sounds like for whatever reason LDN was the cause of your sleep problems and you are one of those who it didn't help. The following I say from a position of no medical training, but from my reading of the emails to this group for over 5 years it would seem that most times people had such occurrences they eventually discovered for instance that they really had Lyme Disease or some other problem. Have you been properly tested for that? helen43765 wrote: > HI, > I just thought I'd like to share my experience with you and wonder if > anyone else has a similar story. > I decided to come off LDN after taking it for 3 years. > I had, for the last year, had dreadful trouble sleeping - waking up > every 2 hrs during the night. I tried taking a lower dose but that > didn't help. > I have a reasonably mild form of progressive MS mainly suffering with > severe fatigue and sensation problems. I must admit that the fatigue > never improved whilst on LDN and the sleep disturbance certainly didn't > help. I stopped taking it in mid November and so far haven't noticed > any adverse effects. I am however sleeping very much better!! I do hope > I've done the right thing......... > Helen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 > > Are you on any kind of other MS therapy? Copaxone maybe, since ending LDN? I worry that by not being on any therapy at all your MS might be progressing. > > Just concerned. > > - Ken > Thanks for your concern Ken, I worry too ! I have primary progressive MS and most drugs are only offered - or effective - for relapsing/remitting forms of MS. I do try to eat as healthily as possible, low saturated fat intake, plenty of fruit and veg and no processed rubbish. Helen> > > > > > ________________________________ > From: helen43765 <wenderott@...> > low dose naltrexone > Sent: Monday, January 26, 2009 5:32:38 PM > Subject: [low dose naltrexone] Sleep disturbance > > > HI, > I just thought I'd like to share my experience with you and wonder if > anyone else has a similar story. > I decided to come off LDN after taking it for 3 years. > I had, for the last year, had dreadful trouble sleeping - waking up > every 2 hrs during the night. I tried taking a lower dose but that > didn't help. > I have a reasonably mild form of progressive MS mainly suffering with > severe fatigue and sensation problems. I must admit that the fatigue > never improved whilst on LDN and the sleep disturbance certainly didn't > help. I stopped taking it in mid November and so far haven't noticed > any adverse effects. I am however sleeping very much better!! I do hope > I've done the right thing....... .. > Helen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Hi , I don't know if I've been tested for Lyme disease. I was diagnosed as having MS by an MRI scan and didn't question it. I will certainly run this by my Doctor. Helen - -- In low dose naltrexone , C <covo@...> wrote: > > Hi Helen, > > Sounds different as most people, myself included, end up sleeping much > better on LDN (after possibly some initial insomnia for a few). Sounds > like for whatever reason LDN was the cause of your sleep problems and > you are one of those who it didn't help. The following I say from a > position of no medical training, but from my reading of the emails to > this group for over 5 years it would seem that most times people had > such occurrences they eventually discovered for instance that they > really had Lyme Disease or some other problem. Have you been properly > tested for that? > > > > helen43765 wrote: > > HI, > > I just thought I'd like to share my experience with you and wonder if > > anyone else has a similar story. > > I decided to come off LDN after taking it for 3 years. > > I had, for the last year, had dreadful trouble sleeping - waking up > > every 2 hrs during the night. I tried taking a lower dose but that > > didn't help. > > I have a reasonably mild form of progressive MS mainly suffering with > > severe fatigue and sensation problems. I must admit that the fatigue > > never improved whilst on LDN and the sleep disturbance certainly didn't > > help. I stopped taking it in mid November and so far haven't noticed > > any adverse effects. I am however sleeping very much better!! I do hope > > I've done the right thing......... > > Helen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Helen, Given what's happened I would strongly recommend you get a Lyme test from a lab known for being more accurate than most. I'm no Lyme expert and others on here know far more than I do but I'm sure IgenIx is one of the 'good' labs and I can't think of the other. Hopefully someone else will be able to help, or if you do a search on the groups postings on Lyme and IgenIx it should pull up the required info. It may be worth you doing a lot of research on Lyme because most conventional doctors are dismissive of its potential and often their patients suffer immensely from it! The following is a post from days ago to the PLS group I am in from a guy who was originally diagnosed with PLS (primary lateral sclerosis) as I have. It should serve as a warning about some doctors and their approach to Lyme!! " I am sending this because it explains what I have been going through, only worse. In the story, Dr. Xxxx was my doctor until he retired. Right now I have to get off one drug (Cymbalta) before I can retry antibiotic treatment again. So for me the damage continues from the Lyme thanks to my old doctors, who after treating me for PLS for 6 years, finally admitted they didn't believe in " all that Lyme garbage " . They had lied about my being tested for it, even though I had told them when it started and many times in those 6 years, " I think I have Lyme " ... No, there is nothing I can do, they are protected by law... That is what really gets me, if they had just said that in 99, I could have gone else where. But they LIED, so I sit now imprisoned in my once athletic body, because they played god and I lost... Well, in a way they were right, for now I have damaged UMN or PLS! " helen43765 wrote: > Hi , > > I don't know if I've been tested for Lyme disease. I was diagnosed as > having MS by an MRI scan and didn't question it. I will certainly run > this by my Doctor. > > Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 I would consider a sleep aid instead of stopping to use LDN. I agree wholeheartedly with Ken - LDN is may be stopping your disease to progress, and you could try different approaches before stopping it. Have you tried melatonin or any sleep aid? Have you tried to find out if there's other reasons why you're waking up this often?..... Ingrid From: Ken <cleremond2000@...>low dose naltrexone Sent: Tuesday, January 27, 2009 1:48:27 AMSubject: Re: [low dose naltrexone] Sleep disturbance Are you on any kind of other MS therapy? Copaxone maybe, since ending LDN? I worry that by not being on any therapy at all your MS might be progressing.Just concerned.- Ken From: helen43765 <wenderott@...>low dose naltrexone Sent: Monday, January 26, 2009 5:32:38 PMSubject: [low dose naltrexone] Sleep disturbance HI, I just thought I'd like to share my experience with you and wonder if anyone else has a similar story.I decided to come off LDN after taking it for 3 years. I had, for the last year, had dreadful trouble sleeping - waking up every 2 hrs during the night. I tried taking a lower dose but that didn't help.I have a reasonably mild form of progressive MS mainly suffering with severe fatigue and sensation problems. I must admit that the fatigue never improved whilst on LDN and the sleep disturbance certainly didn't help. I stopped taking it in mid November and so far haven't noticed any adverse effects. I am however sleeping very much better!! I do hope I've done the right thing....... ..Helen Quote Link to comment Share on other sites More sharing options...
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