Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 I've been taking LDN for almost six months for severe CFS (I don't have Fibromyalgia). Seven years ago, I had a severe viral infection from which I've never recovered. We've ruled out all other possibilities so the doctors think that the virus led to abnormal immune system functioning. I started LDN at 1.5 mg. and slowly worked up to 4.5 mg. I've had modest improvement on the LDN, from about 20% functionality to about 35% on a good day. I'm still house bound and often bed bound. I was hoping for more improvement but will take what I can get and am thankful for whatever help LDN can give me. I plan to keep taking it. But after almost two months on a dose of 4.5 mg, I began to have some sleep problems again -- nightmares and sleep disruption and I was no longer waking up refreshed. I lowered the dose to 3.75 mg. about 10 days ago just as an experiment, and am now doing much better. Does anyone understand why I needed to lower the dose? How does one determine the right dose? Why is it that people with MS often need to take 3 mg. rather than 4.5 mg? I'm asking all these questions because I don't know if I should adjust the dose again, e.g. if I'd be doing even better on a lower dose, like 3 mg. Any help would be appreciated. Toni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 > > I've been taking LDN for almost six months for severe CFS (I don't have Fibromyalgia). > Seven years ago, I had a severe viral infection from which I've never recovered. We've ruled > out all other possibilities so the doctors think that the virus led to abnormal immune > system functioning. I started LDN at 1.5 mg. and slowly worked up to 4.5 mg. I've had > modest improvement on the LDN, from about 20% functionality to about 35% on a good > day. I'm still house bound and often bed bound. I was hoping for more improvement but > will take what I can get and am thankful for whatever help LDN can give me. I plan to keep > taking it. > > But after almost two months on a dose of 4.5 mg, I began to have some sleep problems > again -- nightmares and sleep disruption and I was no longer waking up refreshed. I > lowered the dose to 3.75 mg. about 10 days ago just as an experiment, and am now doing > much better. > > Does anyone understand why I needed to lower the dose? How does one determine the > right dose? Why is it that people with MS often need to take 3 mg. rather than 4.5 mg? I'm > asking all these questions because I don't know if I should adjust the dose again, e.g. if I'd > be doing even better on a lower dose, like 3 mg. > > Any help would be appreciated. > > Toni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 if you had problems with viruse high doses treatment can help. quote Viruses - viruses have to enter the cells before they can duplicate and multiply. Large amounts of Vit C is known to be deadly to viruses. T-cells use vit C to kill bacteria and viruses. i have seen the treatment works with epstein barr.the treatment can be done also after 20 years.if you are intrested ,mail and i will tell you th details. > > I've been taking LDN for almost six months for severe CFS (I don't have Fibromyalgia). > Seven years ago, I had a severe viral infection from which I've never recovered. We've ruled > out all other possibilities so the doctors think that the virus led to abnormal immune > system functioning. I started LDN at 1.5 mg. and slowly worked up to 4.5 mg. I've had > modest improvement on the LDN, from about 20% functionality to about 35% on a good > day. I'm still house bound and often bed bound. I was hoping for more improvement but > will take what I can get and am thankful for whatever help LDN can give me. I plan to keep > taking it. > > But after almost two months on a dose of 4.5 mg, I began to have some sleep problems > again -- nightmares and sleep disruption and I was no longer waking up refreshed. I > lowered the dose to 3.75 mg. about 10 days ago just as an experiment, and am now doing > much better. > > Does anyone understand why I needed to lower the dose? How does one determine the > right dose? Why is it that people with MS often need to take 3 mg. rather than 4.5 mg? I'm > asking all these questions because I don't know if I should adjust the dose again, e.g. if I'd > be doing even better on a lower dose, like 3 mg. > > Any help would be appreciated. > > Toni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hi Toni, some people needs less LDN than other. 4.5 mg is the optimal dose, but dr. Bihary says that the normal dose is often 3.0 - 4.5 mg. If you feel better on 3.0 mg, just use that. We are different, we don't have the same metabolism, and we need to remember that we all are our own guinea pigs due to the use of LDN. Have you tried DLPA to help the immune system? Have you heard of Alpha Lipoic Acid? Those two are powerful amino acids increasing the immune system. Both are natural substances and is easy to order. Read more about it on www.iherb.com I have learnt in this forum, from the oldies that have used / use DLPA that these acids works good with LDN. LDN itself manage to keep the endorphines at a high level for 18 hours. DLPA does the rest. There is a book on www.amazon.com written by dr.Berkson, a doctor that use to participate at the annual LDN conferences. I looked at s photos (thank you ), and I saw that he is participating this last weekend too. I have bought his book, and it's amazing. ALA,. Alpha Lipoic Acids is really powerful. And does no harm to the body. Ingrid [low dose naltrexone] Why do some people do better on less than 4.5 mg?I've been taking LDN for almost six months for severe CFS (I don't have Fibromyalgia). Seven years ago, I had a severe viral infection from which I've never recovered. We've ruled out all other possibilities so the doctors think that the virus led to abnormal immune system functioning. I started LDN at 1.5 mg. and slowly worked up to 4.5 mg. I've had modest improvement on the LDN, from about 20% functionality to about 35% on a good day. I'm still house bound and often bed bound. I was hoping for more improvement but will take what I can get and am thankful for whatever help LDN can give me. I plan to keep taking it.But after almost two months on a dose of 4.5 mg, I began to have some sleep problems again -- nightmares and sleep disruption and I was no longer waking up refreshed. I lowered the dose to 3.75 mg. about 10 days ago just as an experiment, and am now doing much better. Does anyone understand why I needed to lower the dose? How does one determine the right dose? Why is it that people with MS often need to take 3 mg. rather than 4.5 mg? I'm asking all these questions because I don't know if I should adjust the dose again, e.g. if I'd be doing even better on a lower dose, like 3 mg.Any help would be appreciated.Toni------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 A whole line dropped out here; Dr. Berkson is the author of a book that is explaining the positive effect Alpha Lipoic Acid has on the body, the body itself produces acids like this, but sometimes we need to get more, then we can get it from natural substances. Ingrid [low dose naltrexone] Why do some people do better on less than 4.5 mg?I've been taking LDN for almost six months for severe CFS (I don't have Fibromyalgia). Seven years ago, I had a severe viral infection from which I've never recovered. We've ruled out all other possibilities so the doctors think that the virus led to abnormal immune system functioning. I started LDN at 1.5 mg. and slowly worked up to 4.5 mg. I've had modest improvement on the LDN, from about 20% functionality to about 35% on a good day. I'm still house bound and often bed bound. I was hoping for more improvement but will take what I can get and am thankful for whatever help LDN can give me. I plan to keep taking it.But after almost two months on a dose of 4.5 mg, I began to have some sleep problems again -- nightmares and sleep disruption and I was no longer waking up refreshed. I lowered the dose to 3.75 mg. about 10 days ago just as an experiment, and am now doing much better. Does anyone understand why I needed to lower the dose? How does one determine the right dose? Why is it that people with MS often need to take 3 mg. rather than 4.5 mg? I'm asking all these questions because I don't know if I should adjust the dose again, e.g. if I'd be doing even better on a lower dose, like 3 mg.Any help would be appreciated.Toni------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 I had been on 3 mg, down from 4.5 mg after 2+wks of severe sleep interferences, and recently came down w/some virus that my son brought home, from which he recovered in ~2-3 days. Me - it's been a week, and I've decreased LDN again to 1.5 mg, go on a steroid and antibiotic. Am starting to feel somewhat human again - still producing lots of phlegm, sometimes feverish, etc. I think this is due to my IgA deficiency, but it's been upsetting to me that the LDN didn't help me to prevent this. I've been on it 5+ mos (last 2 orders have been from Skip's, and I do think it's worked better than the local compounding pharmacy). For me, 1.5 mg takes away all of my nighttime hip/elbow/shoulder arthritis. But I wanted to comment on the Lipoic acid - I do think it's capable of depleting biotin - folks using it might want to check on that and/or get one that also contains biotin. Sue ****************** Posted by: "Gunn Dybfest" gunn.ingrid@... gunn.ingrid Mon Oct 13, 2008 12:52 pm (PDT) Hi Toni,some people needs less LDN than other. 4.5 mg is the optimal dose, but dr. Bihary says that the normal dose is often 3.0 - 4.5 mg. If you feel better on 3.0 mg, just use that. We are different, we don't have the same metabolism, and we need to remember that we all are our own guinea pigs due to the use of LDN. Have you tried DLPA to help the immune system? Have you heard of Alpha Lipoic Acid? Those two are powerful amino acids increasing the immune system. Both are natural substances and is easy to order. Read more about it on www.iherb.comI have learnt in this forum, from the oldies that have used / use DLPA that these acids works good with LDN. LDN itself manage to keep the endorphines at a high level for 18 hours. DLPA does the rest. There is a book on www.amazon.com written by dr.Berkson, a doctor that use to participate at the annual LDN conferences. I looked at s photos (thank you ), and I saw that he is participating this last weekend too.I have bought his book, and it's amazing. ALA,. Alpha Lipoic Acids is really powerful. And does no harm to the body. Ingrid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 and make sure if your doing the Lipoic that you take vitamin B's it depletes the b'scyndi CCyndi Lenzclenz@...http://www.tdgr2productions.comhttp://www.goldenrescuesouthflorida.com"Is colainn gan cheann duine gan anam cara"The highest calling is to be a soul friend St Brigid On Oct 13, 2008, at 6:58 PM, tlizzy@... wrote:I had been on 3 mg, down from 4.5 mg after 2+wks of severe sleep interferences, and recently came down w/some virus that my son brought home, from which he recovered in ~2-3 days. Me - it's been a week, and I've decreased LDN again to 1.5 mg, go on a steroid and antibiotic. Am starting to feel somewhat human again - still producing lots of phlegm, sometimes feverish, etc. I think this is due to my IgA deficiency, but it's been upsetting to me that the LDN didn't help me to prevent this. I've been on it 5+ mos (last 2 orders have been from Skip's, and I do think it's worked better than the local compounding pharmacy). For me, 1.5 mg takes away all of my nighttime hip/elbow/shoulder arthritis. But I wanted to comment on the Lipoic acid - I do think it's capable of depleting biotin - folks using it might want to check on that and/or get one that also contains biotin. Sue******************Posted by: "Gunn Dybfest" gunn.ingrid   gunn.ingridMon Oct 13, 2008 12:52 pm (PDT)Hi Toni,some people needs less LDN than other. 4.5 mg is the optimal dose, but dr. Bihary says that the normal dose is often 3.0 - 4.5 mg. If you feel better on 3.0 mg, just use that. We are different, we don't have the same metabolism, and we need to remember that we all are our own guinea pigs due to the use of LDN. Have you tried DLPA to help the immune system? Have you heard of Alpha Lipoic Acid? Those two are powerful amino acids increasing the immune system. Both are natural substances and is easy to order. Read more about it on www.iherb.comI have learnt in this forum, from the oldies that have used / use DLPA that these acids works good with LDN. LDN itself manage to keep the endorphines at a high level for 18 hours. DLPA does the rest. There is a book on www.amazon.com written by dr.Berkson, a doctor that use to participate at the annual LDN conferences. I looked at s photos (thank you ), and I saw that he is participating this last weekend too.I have bought his book, and it's amazing. ALA,. Alpha Lipoic Acids is really powerful. And does no harm to the body. Ingrid  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 It's a fact that the amount of LDN which will work for your body depends on your body weight. There are probably many other factors which will influence the proper dosage as well. Unfortunately, since the mainstream medical community has not embraced LDN, there is precious little hard research and fact on which even physicians can rely for dosage information. Now here are many of us trying to figure it out on our own! My daughter, who takes LDN for Crohns, weighs 97-99 lbs and takes 3mg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Hi, Just wanted to say that I was told by pharmacist that the dosage of LDN for treatment of Crohn's was not dependent on body weight. I am an adult and weigh only 90 lbs. and take 4.5 ml. of LDN with no adverse reactions. We are, of course, all different in our reaction to medications. I had started out with 3 ml. but that didn't seem to work so upped it to the 4.5 ml. From what I have read in messages here, those with MS usually take a lower dose. Perhaps when the latest clinical trial of LDN and Crohn's is completed, there will be more medical knowledge about dosage and effectiveness. Bobbie > > It's a fact that the amount of LDN which will work for your body depends on your body weight. There are probably many other factors which will influence the proper dosage as well. Unfortunately, since the mainstream medical community has not embraced LDN, there is precious little hard research and fact on which even physicians can rely for dosage information. Now here are many of us trying to figure it out on our own! My daughter, who takes LDN for Crohns, weighs 97-99 lbs and takes 3mg. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Bobbie I actually think the majority of people with MS take the full dose of 4.5mg Some people with MS experience some stiffness when starting LDN (my husband didnt however) and it may help to start at a low dose of 1.5mg and work your way up to the optimal dose of 4.5mg My husband is not very tall and weighs only 140lbs and has been on 4.5mg for nearly four years. -- In low dose naltrexone , " winbrookdobermans2 " <bobbiejack2@...> wrote: > > Hi, > > Just wanted to say that I was told by pharmacist that the dosage of > LDN for treatment of Crohn's was not dependent on body weight. I am > an adult and weigh only 90 lbs. and take 4.5 ml. of LDN with no > adverse reactions. We are, of course, all different in our reaction > to medications. I had started out with 3 ml. but that didn't seem to > work so upped it to the 4.5 ml. From what I have read in messages > here, those with MS usually take a lower dose. Perhaps when the > latest clinical trial of LDN and Crohn's is completed, there will be > more medical knowledge about dosage and effectiveness. > > Bobbie > > > > > > > > > It's a fact that the amount of LDN which will work for your body > depends on your body weight. There are probably many other factors > which will influence the proper dosage as well. Unfortunately, since > the mainstream medical community has not embraced LDN, there is > precious little hard research and fact on which even physicians can > rely for dosage information. Now here are many of us trying to > figure it out on our own! My daughter, who takes LDN for Crohns, > weighs 97-99 lbs and takes 3mg. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 I took 3.0 for 300 days in 2003, then tried 4.5 for 38 days in 2004, and then again 6 months later for 12. I thought 3.0 was better and had been on 3.0 through 2000 days (10/7/08), I just started doing 4.5 again last week and am ready to go back to 3.0; definitely more stiff, neck spasming and constipation. I wasn't going to say anything until I went back to 3.0 and noticed a different.. maybe just a coincidence that all 3 times now I got the same results. I notice a definite difference [low dose naltrexone] Re: Why do some people do better on less than 4.5 mg? BobbieI actually think the majority of people with MS take the full dose of 4.5mgSome people with MS experience some stiffness when starting LDN (my husband didnt however) and it may help to start at a low dose of 1.5mg and work your way up to the optimal dose of 4.5mgMy husband is not very tall and weighs only 140lbs and has been on 4.5mg for nearly four years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 I would say MOST here with MS take 4.5mgs LDN, which is the optimal adult dosage. Art -- > > Hi, > > Just wanted to say that I was told by pharmacist that the dosage of > LDN for treatment of Crohn's was not dependent on body weight. I am > an adult and weigh only 90 lbs. and take 4.5 ml. of LDN with no > adverse reactions. We are, of course, all different in our reaction > to medications. I had started out with 3 ml. but that didn't seem to > work so upped it to the 4.5 ml. From what I have read in messages > here, those with MS usually take a lower dose. Perhaps when the > latest clinical trial of LDN and Crohn's is completed, there will be > more medical knowledge about dosage and effectiveness. > > Bobbie > > > Quote Link to comment Share on other sites More sharing options...
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