Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Hi Eileen, You have made a very valid point. From all the research I’ve been doing lately it would appear that those people who suffer from either Hashimoto’s, ME/CFS (and possibly fibro) would do better on a lower dose. I know a number of people have been following the ‘standard’ protocol which has been to get your system adjusted and up to 4.5mg). There are a number of people with MS who cannot handle this dose ie very stiff legs and cramps (my partner being one of them). I too have neurological issues as well as UC and after 2 weeks of 3mg of LDN, tried 4.5mg but I didn’t feel as good as I did on 3mg. Dr Zagon is a firm believer to not go higher than 3mg as in time this could cause problems. One thing I would like to share is that when someone is ill, it would appear that their endorphins are depleted. So if anyone is starting LDN just for any IBD disease (and nothing else) my recommendation would be to start on 3mg to give your system the endorphin boost it really is craving for and after about 10-12 months drop down to 2mg, see how you get on and possibly 2mg every other day. In fact, after 10-12 months from my own personal experience, every other day dosing would be best. Perhaps I can share this with you for those who are interested:- http://www.ldnnow.co.uk/8601.html?entryId=b396359dfe7b5d9d72ddac630fb161bb Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow are a political/pressure group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the myriad of uses it shows benefit for. .. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of ecawood52 Sent: 11 September 2010 23:09 To: BTVC-SCD Subject: LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed? Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Ok, so now that he has a prescription for 4.5 in capsule form, do I need a new prescription for the 3 mg.? Could he just take 1/2 of one per day somehow? Can you dissolve in water and drink half a capsule? Also...I have not received any messages after having signed up on the LDN list yesterday. I thought my inbox would have messages from both the SCD and LDN sites today but only the SCD are coming through.Eileen LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed? Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Eileen,Jayne is giving you her opinion, based on her experiences, but it is not standard treatmentand as Zahavi on the other list regularly points out, Dr. Zagon is a researcher not a doctor,even though he has been researching since the beginning of this discovery of LDN. What she is saying is right for MS people and fibro people and people with neurologicalcomplications, but not necessarily forIBS/IBD people. She herself has not yet tried outthe dosage on herself at 2 mg - she's just surmising it may make a difference for her basedon her situation. But then again, maybe it won't. The standard recommended dose - at the moment - for people weighing more than 125with Crohn's or colitis is 4.5 mg. Now it is possible you may want to work up to 4.5 - some people do do that. I myself jumpedin at 4.5 and have been on it ever since. With LDN, like with SCD, results may not be instantaneous. It is for some people, it may notbe for others. It can take a few months - and full results may not be felt for 6 months. For myself, the first thing that I noticed was a decrease in a constant level of gut pain I had had.There are also things like elevation of mood, more energy, etc. So your son should keepin mind a range of symptoms. What is also true - given your son's condition - is that he should be on the transdermal cream andnot on the pills at all, since given the state of his digestion, he may have malabsorption issues. The cream also makes it much easier to divide the dose however you want it - so for the nearfuture, I recommend getting the prescription for 4.5 mg of the cream and you can use as muchor as little as you want - up to 4.5. It will save you some money that way if you are planningon using a smaller dose. Also, depending on where you got the prescription - for example if you got it locally - he maybe reacting to the fillers in the prescription pills. That may be the reason for his reaction.Or not. It's a possibility. I would suggest getting a new prescription to get the cream at coastalcompounding.com,where they are very familiar with making up the dose and worked with Dr. McCandless tocreate the original formulation. Then he can decide when you get it whether he wantsto start it at 1.5 or 3 or 4.5. Like everything else, it requires some fiddling to see where andat what dose he does best. Anyway, that's my advice,MaraOk, so now that he has a prescription for 4.5 in capsule form, do I need a new prescription for the 3 mg.? Could he just take 1/2 of one per day somehow? Can you dissolve in water and drink half a capsule? Also...I have not received any messages after having signed up on the LDN list yesterday. I thought my inbox would have messages from both the SCD and LDN sites today but only the SCD are coming through.Eileen LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed?Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Mara, Thanks for this thoughtful and informative reply. It is very helpful. I use the cream from Coastal Compounding and they are very easy to work with. PJ > > > Ok, so now that he has a prescription for 4.5 in capsule form, do I need a new prescription for the 3 mg.? Could he just take 1/2 of one per day somehow? Can you dissolve in water and drink half a capsule? > > > > Also...I have not received any messages after having signed up on the LDN list yesterday. I thought my inbox would have messages from both the SCD and LDN sites today but only the SCD are coming through. > > > > Eileen > > > > LDN 3mg. vs 4.5 > > > > > > > > I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed? > > > > Eileen > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Eileen, You can split the contents of caps just fine but I think your filler will determine whether you can dissolve in water. I use avicel for my filler and when I tried to put half a cap in water it globbed up in a sticky manner. I found it worked better to divide on a piece of waxed paper and put half into an empty gelatin cap and the rest back in the original cap. I'm up to 3.0 mg now (took about six months to get there) but I should perhaps comment that I got some help even at 1.0. Ok, so now that he has a prescription for 4.5 in capsule form, do I need a new prescription for the 3 mg.? Could he just take 1/2 of one per day somehow? Can you dissolve in water and drink half a capsule? Also...I have not received any messages after having signed up on the LDN list yesterday. I thought my inbox would have messages from both the SCD and LDN sites today but only the SCD are coming through. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Mara, yes it is my opinion based on my recent flare up. I am talking about the science of LDN and also clinical judgement based on Dr Ian Zagon. However please let me remind you, Zahavi is also not a Dr. and also believes it is not good to take more of LDN. We need to be listening to Dr Zagon who has been working with LDN for 30 years. For what you say below, atrophy and clinical practice will not respond to new science. Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow, a patient and friend led organisation (so not a charity) with no funding and no affiliation to any company or organisation, but rather a group of concerned individuals focussed on improving the health of those who suffer from the many diseases and conditions that LDN treats. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Mara Schiffren Sent: 12 September 2010 14:37 To: BTVC-SCD Subject: Re: LDN 3mg. vs 4.5 Eileen, Jayne is giving you her opinion, based on her experiences, but it is not standard treatment and as Zahavi on the other list regularly points out, Dr. Zagon is a researcher not a doctor, even though he has been researching since the beginning of this discovery of LDN. What she is saying is right for MS people and fibro people and people with neurological complications, but not necessarily forIBS/IBD people. She herself has not yet tried out the dosage on herself at 2 mg - she's just surmising it may make a difference for her based on her situation. But then again, maybe it won't. The standard recommended dose - at the moment - for people weighing more than 125 with Crohn's or colitis is 4.5 mg. Now it is possible you may want to work up to 4.5 - some people do do that. I myself jumped in at 4.5 and have been on it ever since. With LDN, like with SCD, results may not be instantaneous. It is for some people, it may not be for others. It can take a few months - and full results may not be felt for 6 months. For myself, the first thing that I noticed was a decrease in a constant level of gut pain I had had. There are also things like elevation of mood, more energy, etc. So your son should keep in mind a range of symptoms. What is also true - given your son's condition - is that he should be on the transdermal cream and not on the pills at all, since given the state of his digestion, he may have malabsorption issues. The cream also makes it much easier to divide the dose however you want it - so for the near future, I recommend getting the prescription for 4.5 mg of the cream and you can use as much or as little as you want - up to 4.5. It will save you some money that way if you are planning on using a smaller dose. Also, depending on where you got the prescription - for example if you got it locally - he may be reacting to the fillers in the prescription pills. That may be the reason for his reaction. Or not. It's a possibility. I would suggest getting a new prescription to get the cream at coastalcompounding.com, where they are very familiar with making up the dose and worked with Dr. McCandless to create the original formulation. Then he can decide when you get it whether he wants to start it at 1.5 or 3 or 4.5. Like everything else, it requires some fiddling to see where and at what dose he does best. Anyway, that's my advice, Mara Ok, so now that he has a prescription for 4.5 in capsule form, do I need a new prescription for the 3 mg.? Could he just take 1/2 of one per day somehow? Can you dissolve in water and drink half a capsule? Also...I have not received any messages after having signed up on the LDN list yesterday. I thought my inbox would have messages from both the SCD and LDN sites today but only the SCD are coming through. Eileen LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed? Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Mara, wouldn’t it be wonderful if we could all get blood tests to see how many endorphins are needed to keep a healthy immune system? Then we’d know how much LDN we need. Thanks for all you’re doing. Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow, a patient and friend led organisation (so not a charity) with no funding and no affiliation to any company or organisation, but rather a group of concerned individuals focussed on improving the health of those who suffer from the many diseases and conditions that LDN treats. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Mara Schiffren Sent: 12 September 2010 14:37 To: BTVC-SCD Subject: Re: LDN 3mg. vs 4.5 Eileen, Jayne is giving you her opinion, based on her experiences, but it is not standard treatment and as Zahavi on the other list regularly points out, Dr. Zagon is a researcher not a doctor, even though he has been researching since the beginning of this discovery of LDN. What she is saying is right for MS people and fibro people and people with neurological complications, but not necessarily forIBS/IBD people. She herself has not yet tried out the dosage on herself at 2 mg - she's just surmising it may make a difference for her based on her situation. But then again, maybe it won't. The standard recommended dose - at the moment - for people weighing more than 125 with Crohn's or colitis is 4.5 mg. Now it is possible you may want to work up to 4.5 - some people do do that. I myself jumped in at 4.5 and have been on it ever since. With LDN, like with SCD, results may not be instantaneous. It is for some people, it may not be for others. It can take a few months - and full results may not be felt for 6 months. For myself, the first thing that I noticed was a decrease in a constant level of gut pain I had had. There are also things like elevation of mood, more energy, etc. So your son should keep in mind a range of symptoms. What is also true - given your son's condition - is that he should be on the transdermal cream and not on the pills at all, since given the state of his digestion, he may have malabsorption issues. The cream also makes it much easier to divide the dose however you want it - so for the near future, I recommend getting the prescription for 4.5 mg of the cream and you can use as much or as little as you want - up to 4.5. It will save you some money that way if you are planning on using a smaller dose. Also, depending on where you got the prescription - for example if you got it locally - he may be reacting to the fillers in the prescription pills. That may be the reason for his reaction. Or not. It's a possibility. I would suggest getting a new prescription to get the cream at coastalcompounding.com, where they are very familiar with making up the dose and worked with Dr. McCandless to create the original formulation. Then he can decide when you get it whether he wants to start it at 1.5 or 3 or 4.5. Like everything else, it requires some fiddling to see where and at what dose he does best. Anyway, that's my advice, Mara Ok, so now that he has a prescription for 4.5 in capsule form, do I need a new prescription for the 3 mg.? Could he just take 1/2 of one per day somehow? Can you dissolve in water and drink half a capsule? Also...I have not received any messages after having signed up on the LDN list yesterday. I thought my inbox would have messages from both the SCD and LDN sites today but only the SCD are coming through. Eileen LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed? Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Repost from me In my interpretation of Dr Zagon’s work is that you can use LDN with a high dose of prednisalone – the only thing you can’t use it for is a combination with opiate painkillers. As Dr Zagon has quite frequently said, some times less is more but has also said that you do need a minimum of 1.75mg to be an effective dose, although with some people this may go down to 1mg. I believe that if the liver isn’t metabolising the Naltrexone quickly enough it will act longer in the body which is equivalent to a higher dose. So maybe this is why the lower dose works for some people ie me. Of course there may be other factors effecting the half life of metabolism. So at the end of the day the critical factor is the length of time the Naltrexone is active in the body to allow enough time for the OGF to do the work, afterall it is the OGF that gives us the benefit from LDN. That’s my reasoning anyway. I look forward to hearing how you’re doing. And don’t forget LDN is a ‘biotherapy’ it stimulates and modulates endogenous systems. If anyone has any doubts on this, please look at the ldnscience.org site. Dr Ian Zagon is the founder/researcher for LDN and has been researching this and it’s effect with the OGF for 30 years. I will be sending out a post in the next few days as for my reasoning for going along with this. Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow, a patient and friend led organisation (so not a charity) with no funding and no affiliation to any company or organisation, but rather a group of concerned individuals focussed on improving the health of those who suffer from the many diseases and conditions that LDN treats. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of My-Stitches Sent: 12 September 2010 17:24 To: BTVC-SCD Subject: Re: LDN 3mg. vs 4.5 Eileen, You can split the contents of caps just fine but I think your filler will determine whether you can dissolve in water. I use avicel for my filler and when I tried to put half a cap in water it globbed up in a sticky manner. I found it worked better to divide on a piece of waxed paper and put half into an empty gelatin cap and the rest back in the original cap. I'm up to 3.0 mg now (took about six months to get there) but I should perhaps comment that I got some help even at 1.0. Ok, so now that he has a prescription for 4.5 in capsule form, do I need a new prescription for the 3 mg.? Could he just take 1/2 of one per day somehow? Can you dissolve in water and drink half a capsule? Also...I have not received any messages after having signed up on the LDN list yesterday. I thought my inbox would have messages from both the SCD and LDN sites today but only the SCD are coming through. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 Forgot to mention that my son is struggling to hang on to his meager 122 lbs. Your post mentioned the 125 lb. number. Is this an issue for him?Do I have to have a Dr.'s prescription for the cream from coastalcompounding? My pharmacist is the one who did the compounding for Jill at Penn State for her study of LDN on Crohns. LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed?Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2010 Report Share Posted September 12, 2010 I too look forwards to Mara’s response – thank you. Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow, a patient and friend led organisation (so not a charity) with no funding and no affiliation to any company or organisation, but rather a group of concerned individuals focussed on improving the health of those who suffer from the many diseases and conditions that LDN treats. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of parvus@... Sent: 12 September 2010 19:20 To: BTVC-SCD Subject: Re: LDN 3mg. vs 4.5 Forgot to mention that my son is struggling to hang on to his meager 122 lbs. Your post mentioned the 125 lb. number. Is this an issue for him? Do I have to have a Dr.'s prescription for the cream from coastalcompounding? My pharmacist is the one who did the compounding for Jill at Penn State for her study of LDN on Crohns. LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed? Eileen Quote Link to comment Share on other sites More sharing options...
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