Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Hi I remember reading on www.low dose naltrexone.org site that some people find it difficult to tolerate 3mg initially and for those people Dr Bihari recommends a lower initial dose of 1.5 to 1.75 mg. Once stabilised at this dosage you can then introduce 3 mg and work your way up to 4.5 mg. Hope this helps and that the lower dosage does not give you the bad effects you have been having. Lots of luck transcend 40 ----- Original Message ----- From: " crispyparis " <crispy51@...> <low dose naltrexone > Sent: Saturday, June 05, 2004 6:19 AM Subject: [low dose naltrexone] What to do ... > Hi all, this is my first post to the group, so I hope you will > forgive any longwinded intoductions that I may add as I feel > necessary. > > This is my second attempt at taking LDN, the first one finished after > three days due to breathlessness, fluttering heart and excess phlegm. > I was unable to lie down due to the tightness around my chest so > didn't go to bed for two weeks. Shortly after that I was admitted to > the local hospital for tests - both heart and chest were given a > clean bill of health. > > I did a bit of research on the Net and finally decided my discomfort > was probably due to 'MS Hug'. Things improved over the next few > weeks, apart from the phlegm problems, so I decided to start with the > 3mg LDN again. Nothing significant happened during the first week, > but I was expecting that, there were just occasional periods of > breathlessness. These often happened first thing in the morning when > I woke up. > > Yesterday (day 8)I woke up feeling terrible. The breathlessness was > back permanently and my head was swimming. I felt as though I was > about to pass out on several occasions and it even passed through my > head that I wasn't going to see the day out. OK, a bit dramatic you > might think, but I'd already gone through panic attacks the last time > I had problems, so I'd learnt to control those. Yesterday evening I > discussed the situation with my wife and decided to leave the LDN > alone. > > I didn't feel able to lie down so spent the night in the chair. > Today, I still feel a little breathless, but other symptoms are > better and I feel almost normal, apart from an ache above my left ear. > > So the question is - Do I knock LDN on the head or give it another > try? I have PPMS and was diagnosed eleven years ago. > > Any ideas guys? > > All the best, > P > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 > some people find it difficult to tolerate > 3mg initially and for those people Dr Bihari > recommends a lower initial dose of 1.5 to ... Thanks Dave, I've read a lot but don't remember anyone having these problems. Perhaps it is just an MS thing and would have happened anyway. All the best, P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 I tried 4.5 and after a few days started having irregular heart beats, so I went back to 3. Tried the increase a second time and the same thing happened, so I'm linking the irregular heart beats to the higher dose of LDN. My worst MS flare up in 1999 included serious feelings of breathlessness - I was absolutely convinced I wasn't getting enough oxygen - and the muscles around my chest were very tight. My neurologist actually laughed at me! Nope, I don't see her anymore. Now even at 3mg the muscles around my chest are a bit tight. If I quit taking the LDN that eases some but doesn't go completely away anymore. It's an MS present... but the other benefits of the LDN more than compensate for the tightness, and I'm hoping it will eventually go away, like the leg stiffness that so many people experience. Maybe you should go to 1.5 for quite a while, then try 3? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 I would try transdermally just once it is working for me that way. Otherwise there is no other recourse but to stop it, I think being suffocated would be a terrible way to go. Reg -------Original Message------- From: low dose naltrexone Date: 06/04/04 23:21:04 low dose naltrexone Subject: [low dose naltrexone] What to do ... Hi all, this is my first post to the group, so I hope you will forgive any longwinded intoductions that I may add as I feel necessary.This is my second attempt at taking LDN, the first one finished after three days due to breathlessness, fluttering heart and excess phlegm. I was unable to lie down due to the tightness around my chest so didn't go to bed for two weeks. Shortly after that I was admitted to the local hospital for tests - both heart and chest were given a clean bill of health.I did a bit of research on the Net and finally decided my discomfort was probably due to 'MS Hug'. Things improved over the next few weeks, apart from the phlegm problems, so I decided to start with the 3mg LDN again. Nothing significant happened during the first week, but I was expecting that, there were just occasional periods of breathlessness. These often happened first thing in the morning when I woke up.Yesterday (day 8)I woke up feeling terrible. The breathlessness was back permanently and my head was swimming. I felt as though I was about to pass out on several occasions and it even passed through my head that I wasn't going to see the day out. OK, a bit dramatic you might think, but I'd already gone through panic attacks the last time I had problems, so I'd learnt to control those. Yesterday evening I discussed the situation with my wife and decided to leave the LDN alone.I didn't feel able to lie down so spent the night in the chair. Today, I still feel a little breathless, but other symptoms are better and I feel almost normal, apart from an ache above my left ear.So the question is - Do I knock LDN on the head or give it another try? I have PPMS and was diagnosed eleven years ago.Any ideas guys?All the best,P ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 > I tried 4.5 and after a few days started having irregular... Thanks , that's reassuring to know I'm not alone with this. It sounds like reducing the dose could well be the answer. All the very best, P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 > I already knew through the MSRC message board you were having a hard time lately. Sorry to hear you're still having problems. I doubt if it is the LDN thats causing your problems but I know that a very few individuals have not been able to tolerate it for whatever reasons. Hi Lizzie, thanks for your message. I don't want to stop completely, it sounds like a good idea to try reducing the dose. Dr Bob suggested I build myself up with supplements, but I never got round to researching them - all I currently take is cod liver oil and vit C. All the best, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 Hi Chris! Sorry to hear that you have been having such a challenging time trying to utilize LDN! Nothing like as heavy as your experience, but I also didn`t find it easy initially, it took some time, I did wonder if it was going to work for e!: -Started at 4.5mg & ended progressively dividing up the caps until eventually I was taking just 1.5mg, it just kept getting to feel too much! Gradually at 1.5mg things started to feel more OK & eventually good, but it took a while! During the time that I was reducing my dosage, I also started to take Benfotiamine! -A lipid (fat soluble) form of thiamine, vit B1, that was being enthused about a while back: this gave me a great boost, but I still had to continue dropping down to 1.5mg of LDN. I have since started increasing again (after about 5 wks at 1.5mg), first to 2.25mg, & now on 3mg. Being as I am SPMS, it`s not that everything has now gone " perfect " , there have been some symptomatic improvements- (slight!) BUT!........ -there have been PHENOMENAL & SUSTAINED IMPROVEMENTS in useable energy levels: Even though I have a chronic tendancy to overdo things, the sustained energy that I have been putting out on physical tasks for the last month or so has been vast compared to pre LDN! - Pre LDN, I would have " knocked myself for six " many times over even attempting to do what I have been doing recently!...........Now,..........If I could only get normally tired & get some proper deep sleep!!!....... (I`ve had this problem longtime pre DN!) -Started LDN 26 Feb `04, by the way. If you do want to keep trying, one way might be to drop to 1.5 mg & see if the body can cope with that, if it can`t, I think that I would consider dropping to 1 mg & see what happens there: Our bodies are so individual! It seems it may be a case of establishing a foundation, no matter how small & gradually extending from there as the body allows! Another interesting possibility would be to try out the transdermal application, which Reg K has just been enthusing about. If you should want more info about transdermal, I have noticed that who posts on the " Histamine, LDN, B12,4AP, Antiviral & Alternative MS Therapies " site has been working with that approach for some time, because of her own problems with LDN: -Perhaps she could help you? I think that Dr. Bob`s suggestion re. building yourself up with supplements is wise: MS & the attendant cascade of consequences from a compromised immune system, digestive system ( & goodness knows how many other systems!) seems to place an increasingly heavy heavy burden on our diminishing life energy, & this seems to become rapidly more obvious as the aging process starts to kick in more seriously! I have been taking many nutritional supplements for many years, in addition to extensive dietary modifications: Even with LDN now " working " , I wouldn`t wish to abandon this approach! -Our bodies need all the support we can give them! Where`s the advantage in our restricting this support?! -The list of supplements that you are presently taking does seem rather minimal to say the least..... As you are probably already aware, one suggested Supplement List is Ashton Embrey`s -(Best Bet Diet) Direct-MS site list, at: http://www.direct-ms.org/supplements.html -This is listed in order of priorities, -as he sees them! (It has been suggested that anyone supplementing VitD (his primary recommendation) at the level specified here, should have their vit D level checked every 6 mo., in order to know that their level is not getting too high.) There is much MS info available on the Direct MS site. Anyway, I do hope that you soon start to have some success with your efforts: - " Gently, gently, catchee monkey! " I think that this LDN group is great for info & support: May you find what you need to turn things around!........ What ever else, smile & be happy! -there`s no law against it, -it`s free & it helps those little endorphins thrive!!! Gerald (SPMS) PS. I should possibly mention that while I have found it to be a terrific bo ost to physical energy & also seeming to boost mind states, & though Benfotiamine has a history decades of safe usage at significantly higher dosage than ordinary water soluble vit.B1 (has esp. been used with diabetics), there have recently been suggestions that possibly high doses of B1 should be avoided by those with cancer tumors: Not that it causes cancer, rather that thiamin might also aid the growth of tumors. (A good source for supply & info on Benfotiamine: http://www.benfotiamine.net ) From: " crispyparis " <crispy51@...> <low dose naltrexone > Sent: Saturday, June 05, 2004 10:57 PM Subject: [low dose naltrexone] Re: What to do ... > > > > I already knew through the MSRC message board you were having a > hard time lately. Sorry to hear you're still having problems. I doubt > if it is the LDN thats causing your problems but I know that a very > few individuals have not been able to tolerate it for whatever > reasons. > > Hi Lizzie, thanks for your message. I don't want to stop completely, > it sounds like a good idea to try reducing the dose. Dr Bob suggested > I build myself up with supplements, but I never got round to > researching them - all I currently take is cod liver oil and vit C. > > All the best, > Chris > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 > Hi Chris!... and alot of other useful information ) Hi Gerald, Thanks for your thoughts and associated links, that was very useful, and much appreciated. I'm doing a bit of research on the supplements, I guess I shall have to go that route, but I've been fighting against the idea from the initial diagnosis. I had a friend who was diagnosed at around the same time and he took almost everything available, starting each day with a handful of pills. I was advised against them by my first neuro (but he was a waste of space) and also by two GPs, so I have tried to avoid anything that hadn't been clinically proven to work - I guess I'm getting desperate now. Thanks again for your thoughts and suggestions, I will certainly be looking into them in depth. All the very best, P Quote Link to comment Share on other sites More sharing options...
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