Guest guest Posted August 31, 2005 Report Share Posted August 31, 2005 Hi Dave Thanks for the reply.(Right now I stopped taking LDN all over,as the stiffness got too debilitating.) What's the best way to find out the right amount?Listening to your body,yes;but a lot of MS people (me included definitely) have daily,weekly variations. cu,Tom --- <davidtaylor@...> wrote: > Hi > > Please be aware that LDN is taken at a dose to boost > the immune system. The right dose for most people is > 3-4.5Mg, if you take too much you will depress your > immune system. Although a very few people do need to > go above 4.5Mg to achieve the correct effect for > most people 5Mg and above will start to depress > their immune system, so I would recommend great care > if you decide to go above 4.5MG. The trick with LDN > is to set the dose that boosts your immune system as > much as possible, taking more than that personally > set dose will do harm. You can not speed up the > working of LDN by increasing the dose you have > determined is right for you. > > Dave > > Message: 7 > Date: Tue, 30 Aug 2005 17:42:20 -0000 > From: " Bren " <TwisterAlley2@...> > Subject: Re: Mitoxantrone (novantrone) and LDN > > > > Hi > > > > Has anyone taken LDN whilst on Mitox > therapy?Good,bad results? > > Or,how long did you wait after the last infusion? > > > > (I started LDN a week ago,my last mitox inf having > been 2 months > > back.The last 2 days,I've been feeling quite bad.) > > > > Regards,Tom > ======= > > WOW, you have severely suppressed your immune system > with chemo(Novantrone) and now you are boosting it > with LDN. It will take LDN lots longer to get your > immune system back up. You may see some days you do > not feel well on LDN due to your endorphins being > spiked upward from being so suppressed. Since you > have done chemo try if any way possible to get up to > 4.5mg and you MAY, that is MAY even be one that will > need slightly more...5.0mg, 5.5mg or 6.0mg of LDN > since you've done the chemo. > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2005 Report Share Posted August 31, 2005 Tom As far as I can see no one has developed a best way to set the dose. Some have put stiffness down to filler and have reported that moving from lactose to calcium carbonate has resolved that problem, but I would have to say that some have reported that moving to calcium carbonate has stopped LDN working for them. We found setting the dose for my wife a bit tricky she started on 3Mg with calcium carbonate filler and it was like a miracle, she was going downhill very fast and the decline stopped dead in 4 days. She then after 1 month moved to 4.5Mg and it was like a disaster much worse than not taking LDN. we moved her back to 2 x 1.5mg and that was not quite right so we finally settled on 2.8mg in calcium carbonate. We had the added complication of a back problem which effectively masked some of the benefits of LDN until we moved from Celebrex to electronic pain control. All that took about 6 months to sort out and in that time the MS did progress slightly. All of that is over a year ago now and since we have sorted it out there has been very gradual improvement. You have the added complication of novertron being in your system and I doubt anyone can really tell you what the on going effect of that will be, but you have lived to tell the tail so be grateful for that. So far as I can see the general advise for MS is start with 3 MG for one month and if you MS has progressed to having spasms then stick at that dose (or lower if 3mg is a problem) but if you have not progressed to spasms try 4.5Mg and stick with that if you do not get an adverse reaction. We started with Calcium Carbonate filler because that was the advice in the UK and it has worked well for my wife. The issue of filler is related to 1) some people believe Calcium Carbonate will slow LDN release thereby stopping it working 2) Some people believe Lactose will produce stiffness. We have not tried Lactose and Calcium Carbonate works well for my wife so I do not think I can say more than that. If anyone tell you this is all a placebo then ask them why it is so dose critical. It may be a bit tricky to use for some (us for instance) but those of us who have made it worked will fight to the last to keep using it. Dave Message: 13 Date: Wed, 31 Aug 2005 06:51:50 -0700 (PDT) From: tf <luxtf@...>Subject: Re: Re: Mitoxantrone (novantrone) and LDNHi DaveThanks for the reply.(Right now I stopped taking LDNall over,as the stiffness got too debilitating.)What's the best way to find out the rightamount?Listening to your body,yes;but a lot of MSpeople (me included definitely) have daily,weeklyvariations.cu,Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Hi Dave Reading all your story,you have quite some experience with LDN. The LDN I had,was in liquid form,prepared by the pharmacy;so I don't know anything about filler. Yet it is amazing how this can interact. Concerning Mitox-LDN reactions,they surely are unknown.There are no studies for LDN,so definitely none for that combo... Good Luck,Tom p.s.:Do you know if it's possible to measure the endorphin levels? --- <davidtaylor@...> wrote: > Tom > > As far as I can see no one has developed a best way > to set the dose. Some have put stiffness down to > filler and have reported that moving from lactose to > calcium carbonate has resolved that problem, but I > would have to say that some have reported that > moving to calcium carbonate has stopped LDN working > for them. We found setting the dose for my wife a > bit tricky she started on 3Mg with calcium carbonate > filler and it was like a miracle, she was going > downhill very fast and the decline stopped dead in 4 > days. She then after 1 month moved to 4.5Mg and it > was like a disaster much worse than not taking LDN. > we moved her back to 2 x 1.5mg and that was not > quite right so we finally settled on 2.8mg in > calcium carbonate. We had the added complication of > a back problem which effectively masked some of the > benefits of LDN until we moved from Celebrex to > electronic pain control. All that took about 6 > months to sort out and in that time the MS did > progress slightly. All of that is over a year ago > now and since we have sorted it out there has been > very gradual improvement. You have the added > complication of novertron being in your system and I > doubt anyone can really tell you what the on going > effect of that will be, but you have lived to tell > the tail so be grateful for that. So far as I can > see the general advise for MS is start with 3 MG > for one month and if you MS has progressed to having > spasms then stick at that dose (or lower if 3mg is a > problem) but if you have not progressed to spasms > try 4.5Mg and stick with that if you do not get an > adverse reaction. We started with Calcium Carbonate > filler because that was the advice in the UK and it > has worked well for my wife. The issue of filler is > related to 1) some people believe Calcium Carbonate > will slow LDN release thereby stopping it working 2) > Some people believe Lactose will produce stiffness. > We have not tried Lactose and Calcium Carbonate > works well for my wife so I do not think I can say > more than that. If anyone tell you this is all a > placebo then ask them why it is so dose critical. It > may be a bit tricky to use for some (us for > instance) but those of us who have made it worked > will fight to the last to keep using it. > > Dave ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Tom If you are using a liquid version of LDN made up from Naltrexone then that is fine and unless you have any bad reaction to the filler in the original tablet which will almost certainly be lactose then the filler is irrelevant. Some have reported that liquid Naltrexone has a faster release and therefore a slightly smaller dose is required to achieve the same result. Be aware however that there is a liquid version of this class of drug licensed for the treatment of Heroin addiction which suppresses the immune system at any dose. So dissolving natrexone in distilled or dionised water is fine so long as it is kept in a fridge but if you purchase a liquid manufactured as liquid from the start then you need to check it really will boost the immune system at low dose. I know that it is possible to measure serum endorphin levels because that was part of the development process for LDN treatment, but I do not know how it is done. If it could be done easily I would think it would be a good thing to measure when starting LDN and trying to determine the correct dose. I think however setting the dose for most people is not that big an issue and for those of us for whom it proved to be an issue we have worked it out. Once you have set the dose however those that can not take more than 1.5Mg or those who need 6.8Mg seem to do as well as those on the more normal dose of 3-4.5Mg. Dave Subject: Re: Re: Re: Mitoxantrone (novantrone) and LDNHi DaveReading all your story,you have quite some experiencewith LDN.The LDN I had,was in liquid form,prepared by thepharmacy;so I don't know anything about filler.Yet it is amazing how this can interact.Concerning Mitox-LDN reactions,they surely areunknown.There are no studies for LDN,so definitelynone for that combo...Good Luck,Tomp.s.:Do you know if it's possible to measure theendorphin levels? Quote Link to comment Share on other sites More sharing options...
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