Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 -I have done low dose naltrexone for about 4 months. I didn't see much difference. One of the things that has gone on with me is a herpes outbreak on my tailbone and it would be there almost all the time, I was not sure if that is what would make me have that awful flu like achiness but, on the naltrexone I still broke out. I don't think the flue feeling was quite as strong and at the time I was not having as much pain as I do now. I guess you know that any type of pain med that has a nartic can't spell will not work with the naltrexone. I only take Ultram so I don't take stonger pain meds, but I have had to with a pinched nerve. I have also taken shots of glutathione atp, I did feel better from the flu like achiness while I took those. But after about 2months something strange happened to my face and I didn't know what caused this strange thing to happen so I stopped them. I had a blood test from spectracell for glutathione and mine was normal but I still think I felt an improvment on them. I started getting so sleepy last spring and nothing was helping me to stay awake and I ran across something about atp and sleelp. I could not understand the article but it made it sound like it would make you sleep and I thought it gave you energy. I do think the shots were a plus I just had some things that popped up and when I don't know what cause it then I have to retrace everything and place my own Dr detective. My Drs tried also. But that is when I ask one my shrink if someone could have a small case of encephlitis and not be in intensive care and he said yes lyme. That put me on this path and now I found out. Sandy -- In , " jill1313 " <jenbooks13@h...> wrote: > > AS long as we're on alternative med topics (ambrotose, hyperbaric), > anyone consider low dose naltrexons therapy for lyme? Or the BLasi > protocol which is mineral balancing? just curious. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Sandy I tried the LDN a couple of yrs back, It didn't seem to do much except to make me alot more stiff (one of my main problems) It did seem to help with energy. I know other lymies who take it to balance the immune system. You can't take any pain meds that have codeine, I can't remember about the ultram, seems like that was not OK to take either. There is a LDN group on . They are helpful with questions, mainly MS people and they don't like to hear about the lyme/ms connection. Seems like some people really like their " box " sandy <irishdrought2003@...> wrote: -I have done low dose naltrexone for about 4 months. I didn't see much difference. One of the things that has gone on with me is a herpes outbreak on my tailbone and it would be there almost all the time, I was not sure if that is what would make me have that awful flu like achiness but, on the naltrexone I still broke out. I don't think the flue feeling was quite as strong and at the time I was not having as much pain as I do now. I guess you know that any type of pain med that has a nartic can't spell will not work with the naltrexone. I only take Ultram so I don't take stonger pain meds, but I have had to with a pinched nerve. I have also taken shots of glutathione atp, I did feel better from the flu like achiness while I took those. But after about 2months something strange happened to my face and I didn't know what caused this strange thing to happen so I stopped them. I had a blood test from spectracell for glutathione and mine was normal but I still think I felt an improvment on them. I started getting so sleepy last spring and nothing was helping me to stay awake and I ran across something about atp and sleelp. I could not understand the article but it made it sound like it would make you sleep and I thought it gave you energy. I do think the shots were a plus I just had some things that popped up and when I don't know what cause it then I have to retrace everything and place my own Dr detective. My Drs tried also. But that is when I ask one my shrink if someone could have a small case of encephlitis and not be in intensive care and he said yes lyme. That put me on this path and now I found out. Sandy -- In , " jill1313 " wrote: > > AS long as we're on alternative med topics (ambrotose, hyperbaric), > anyone consider low dose naltrexons therapy for lyme? Or the BLasi > protocol which is mineral balancing? just curious. Questions and/or comments can be directed to the list owner at -Owner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 I don't know about Dr. G. However Donovan had used it for awhile, and I had not noticed any improvements with him. Sheri Steffens Mother of Donovan 7 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Forwarded from another list. . .does anyone know Dr. G's opinion of LDN? Thanks! Heidi [Autism-Biomed-BayArea] Re: LDN Hi Luana, LDN stands for low dose naltrexone, and it is an immune modulator. Jaqueline McCandles did an informal study on some of her patients to see if it would help the immune system... what she found was that a number of kids had positive responses " in the area of mood, cognition, language, and relating. " She has a whole group devoted to LDN and within the group is a database tracking people's positive/negative responses. We have been using the transdermal cream since late July, my son had a little bit restless sleep the first couple of weeks we were ramping up, but I still thought the positives were worth it to continue. Anyway, here is the group address and the report from Dr. McCandles' study. Autism_LDN/ LOW-DOSE NALTREXONE: INFORMAL CLINICAL STUDY REPORT, 7-1-05 What is naltrexone? Naltrexone is an FDA-approved drug called Revia used as an opiate antagonist, and has been used to treat opiate drug addiction. At full dose, usually 50-150mg a day, it blocks the response to opiate drugs such as heroin or morphine. I as well as many other DAN! doctors have tried Naltrexone as an opioid blocker hoping to offset the opioid effects of the large peptides in wheat and milk that are thought to affect our kids adversely. However, I never found it to be useful for that purpose, and I haven't heard of many others who have. Some studies were actually done on autistic children by researchers to try to study this, but results were not encouraging. I occasionally hear of it being used for SIB, but I do not know its effectiveness in that regard. However, it has been shown that opioids can operate as cytokines, operating through opioid receptors on immune cells and producing immunomodulatory effects. The quality of an individual's immune system can be evaluated through the balance of cytokines (e.g. interleukins and interferons) it is producing. Cytokines are the principal communication signalers of the immune system. A popular classification method is referred to as the Th1/Th2 balance; Th1 cells promote cell-mediated immunity while Th2 cells induce humoral immunity. While cellular immunity (Th1) directs Natural Killer T- cells and macrophages to attack abnormal cells and microorganisms at sites of infection inside the cells, humoral immunity (Th2) results in the production of antibodies used to neutralize foreign invaders and substances outside of the cells. The inability to respond adequately with a Th1 response can result in chronic infection and cancer; an overactive Th2 response can contribute to allergies, various syndromes and play a role in autoimmune disease, which probably all of our ASD children have to some extent. A Manhattan, New York physician, Dr. Bernard Bihari, studying the immune responses in a group of AIDs patients, discovered that a very low dose of naltrexone in less than one-tenth the usual dosage boosts the immune system and helps fight any disease that is characterized by inadequate immune function. As an effective up- regulator of the immune system, he termed this new therapy Low-Dose Naltrexone (LDN) and has described remarkable responses in those with AIDs, cancer, and autoimmune diseases such as Multiple Sclerosis (MS). LDN tends to normalize the immune system by elevating the body's endorphin levels but also accomplishes its results with virtually no side effects or toxicity. I first got the idea of trying this on ASD children from hearing of its benefits in halting the usual progression in MS disease, reading of many first- hand reports of no recurrence for up to 5 and 6 years in some of these people using a nightly tiny dose of Naltrexone. In reviewing the literature, the lowest dose Naltrexone that had been used in autistic children was 12.5mg, and the researchers were looking for its use as an opioid antagonist, not an immune system stimulant. Since the endorphins are an integral part of the immune system, when a tiny dose of naltrexone (3mg for children, 4.5mg for adults) is given between 9-12pm at night (11pm is ideal) there is an attempt for the body to overcome the opioid block and the endorphins rise, to stay elevated throughout the next 18 hours. I have just completed an 8-week informal clinical study on 15 of my ASD patients using low-dose naltrexone, or LDN. Several adults participated also, one with Crohn's Disease, one with Chronic Fatigue Syndrome, and Jack and myself as controls, not having any immune disorder that we know about. The dose Dr. Bihari found most efficacious was between 3-4.5mg, so the children were given 3mg and the adults or children over 100 lbs 4.5mg. This medication is terribly bitter (causing subjects from previous studies to drop out), and needs to be given once daily only between 9-12pm (ideally 11pm, which is usually about the time parents go to bed). I worked with Dr. Tyrus at Coastal Compounding; he at first created capsules in these two strengths, but then we decided on a transdermal cream which parents could put onto their kids just before parents go to bed – hopefully the kids are long asleep. That way we could adjust the dose easily (some of the tinier kids did better with only 1-1/2mg), the bitter taste was no problem, and it could be put on their bodies while they slept. It has worked wonderfully and was brilliantly executed by Tyrus, with whom I have worked closely on many compounds for ASD kids over the years. A month's supply is $30, a two-month supply is $55. I asked parents to report weekly on: Sleep, Appetite, Stools, Relating, General Activity, Cognition, and Language. 8 of the 15 children have had positive responses, and five of these 8 have been nothing short of phenomenal according to their parents. The primary positive responses have been in the area of mood, cognition, language, and relating. 5 of the children had equivocal results, some good responses interspersed with complications with gut infections and treatments, so it was difficult to know just what was doing what. One child dropped out because of no response after 4 weeks (my Chelsey, of course, a notorious non-responder), one child dropped out because of vacations and trips, and another stopped because of personal family issues. No allergic reactions were noted to the cream. The primary side effect was that in the first few days of taking this medicine, the child might have some insomnia and wake up earlier. Even then, most woke up in better mood. Quite a few of the kids had early hyperactive/hyperawake effects, and this was temporary (3-5 days) except for two of the tiny kids, who finally got much better when their dose was decreased. One of these ended up doing very well with only a tiny bit (almost immeasurable) each night, yet it had a definite effect. I would say the most consistent positive report has been happiness and good mood in the kids. I now recommend everyone start with ¼ cc, or 1.5mg for a few nights before going on to the ½ cc, which is 3mg. The adults will stay on 4.5mg, though 3 may be plenty for some of them. The two adults in the study, one with Crohn's and the other with Chronic Fatigue Syndrome, have had very positive responses, and the Crohn's participant says she has not had any problems with her gut since taking this. Dr. Bihari has announced a study with 15 Crohn's with all 15 having a very positive and sustained excellent reaction to the therapy. Other than feeling a little more erotic (this has been reported in some of the MS patients), Jack and I have not noticed any side effects from the use at 4.5mg nightly. We feel pretty good on it; the mood elevation is pretty universal with everyone who takes it, and increased socialization had even been noted in some earlier studies which used much bigger doses. No one else has done a study of ASD kids with these tiny doses, and no one to my knowledge has used the transdermal application at night for the endorphin rush (pulse) that takes place about 2-4 am. All participants who completed the study have indicated they wish to continue. This very small and very preliminary study has been positive enough to warrant a more formal study, and I am trying to get Dr. Vojdani at Immunosciences interested in participating with some immune testing to verify the supposed T2 to T1 shift that I believe is happening for at least some of the children. However, the doses are tiny, the application is easy, it is non-toxic at these doses, and it is relatively inexpensive, so I suspect we will get lots of informal clinical data from those who will be starting to use it now long before we get a formal study conducted. This is by no means a magic bullet, but I am adding it to my armamentarium to try to get the children as immune-efficient as possible. I would appreciate parents reporting on the lists I monitor; for questions, please do not post or phone me personally, but I will try to address questions on the CSB e-list if other parents or your doctors cannot. There is a website www.low dose naltrexone.com that will provide more information to those desiring such. To those of you who participated in the study; please feel free to share on the lists any of your feelings, impressions, and results, good, bad, or indifferent – the more we know the better for everyone. I THANK ALL OF YOU SO MUCH for being trusting enough to go along with me in trying something new, and I thank Dr. Tyrus for helping devise a successful form to use in our children. BTW, he has as usual offered to share his formula with any other compounding pharmacy who wishes to call him, 912-354-5188. Those of you in my study may want to transfer your prescription to your local compounder to save shipping charges. Jaquelyn McCandless, M.D. 7-2-05 > Hi , > > what is LDN that you mentioned that helped you son with attention and mood? > Thank you > Luana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Hey Heidi~~ How are you? What's LDN? Rose Re: LDN Forwarded from another list. . .does anyone know Dr. G's opinion of LDN? Thanks! Heidi [Autism-Biomed-BayArea] Re: LDN Hi Luana, LDN stands for low dose naltrexone, and it is an immune modulator. Jaqueline McCandles did an informal study on some of her patients to see if it would help the immune system... what she found was that a number of kids had positive responses " in the area of mood, cognition, language, and relating. " She has a whole group devoted to LDN and within the group is a database tracking people's positive/negative responses. We have been using the transdermal cream since late July, my son had a little bit restless sleep the first couple of weeks we were ramping up, but I still thought the positives were worth it to continue. Anyway, here is the group address and the report from Dr. McCandles' study. Autism_LDN/ LOW-DOSE NALTREXONE: INFORMAL CLINICAL STUDY REPORT, 7-1-05 What is naltrexone? Naltrexone is an FDA-approved drug called Revia used as an opiate antagonist, and has been used to treat opiate drug addiction. At full dose, usually 50-150mg a day, it blocks the response to opiate drugs such as heroin or morphine. I as well as many other DAN! doctors have tried Naltrexone as an opioid blocker hoping to offset the opioid effects of the large peptides in wheat and milk that are thought to affect our kids adversely. However, I never found it to be useful for that purpose, and I haven't heard of many others who have. Some studies were actually done on autistic children by researchers to try to study this, but results were not encouraging. I occasionally hear of it being used for SIB, but I do not know its effectiveness in that regard. However, it has been shown that opioids can operate as cytokines, operating through opioid receptors on immune cells and producing immunomodulatory effects. The quality of an individual's immune system can be evaluated through the balance of cytokines (e.g. interleukins and interferons) it is producing. Cytokines are the principal communication signalers of the immune system. A popular classification method is referred to as the Th1/Th2 balance; Th1 cells promote cell-mediated immunity while Th2 cells induce humoral immunity. While cellular immunity (Th1) directs Natural Killer T- cells and macrophages to attack abnormal cells and microorganisms at sites of infection inside the cells, humoral immunity (Th2) results in the production of antibodies used to neutralize foreign invaders and substances outside of the cells. The inability to respond adequately with a Th1 response can result in chronic infection and cancer; an overactive Th2 response can contribute to allergies, various syndromes and play a role in autoimmune disease, which probably all of our ASD children have to some extent. A Manhattan, New York physician, Dr. Bernard Bihari, studying the immune responses in a group of AIDs patients, discovered that a very low dose of naltrexone in less than one-tenth the usual dosage boosts the immune system and helps fight any disease that is characterized by inadequate immune function. As an effective up- regulator of the immune system, he termed this new therapy Low-Dose Naltrexone (LDN) and has described remarkable responses in those with AIDs, cancer, and autoimmune diseases such as Multiple Sclerosis (MS). LDN tends to normalize the immune system by elevating the body's endorphin levels but also accomplishes its results with virtually no side effects or toxicity. I first got the idea of trying this on ASD children from hearing of its benefits in halting the usual progression in MS disease, reading of many first- hand reports of no recurrence for up to 5 and 6 years in some of these people using a nightly tiny dose of Naltrexone. In reviewing the literature, the lowest dose Naltrexone that had been used in autistic children was 12.5mg, and the researchers were looking for its use as an opioid antagonist, not an immune system stimulant. Since the endorphins are an integral part of the immune system, when a tiny dose of naltrexone (3mg for children, 4.5mg for adults) is given between 9-12pm at night (11pm is ideal) there is an attempt for the body to overcome the opioid block and the endorphins rise, to stay elevated throughout the next 18 hours. I have just completed an 8-week informal clinical study on 15 of my ASD patients using low-dose naltrexone, or LDN. Several adults participated also, one with Crohn's Disease, one with Chronic Fatigue Syndrome, and Jack and myself as controls, not having any immune disorder that we know about. The dose Dr. Bihari found most efficacious was between 3-4.5mg, so the children were given 3mg and the adults or children over 100 lbs 4.5mg. This medication is terribly bitter (causing subjects from previous studies to drop out), and needs to be given once daily only between 9-12pm (ideally 11pm, which is usually about the time parents go to bed). I worked with Dr. Tyrus at Coastal Compounding; he at first created capsules in these two strengths, but then we decided on a transdermal cream which parents could put onto their kids just before parents go to bed ? hopefully the kids are long asleep. That way we could adjust the dose easily (some of the tinier kids did better with only 1-1/2mg), the bitter taste was no problem, and it could be put on their bodies while they slept. It has worked wonderfully and was brilliantly executed by Tyrus, with whom I have worked closely on many compounds for ASD kids over the years. A month's supply is $30, a two-month supply is $55. I asked parents to report weekly on: Sleep, Appetite, Stools, Relating, General Activity, Cognition, and Language. 8 of the 15 children have had positive responses, and five of these 8 have been nothing short of phenomenal according to their parents. The primary positive responses have been in the area of mood, cognition, language, and relating. 5 of the children had equivocal results, some good responses interspersed with complications with gut infections and treatments, so it was difficult to know just what was doing what. One child dropped out because of no response after 4 weeks (my Chelsey, of course, a notorious non-responder), one child dropped out because of vacations and trips, and another stopped because of personal family issues. No allergic reactions were noted to the cream. The primary side effect was that in the first few days of taking this medicine, the child might have some insomnia and wake up earlier. Even then, most woke up in better mood. Quite a few of the kids had early hyperactive/hyperawake effects, and this was temporary (3-5 days) except for two of the tiny kids, who finally got much better when their dose was decreased. One of these ended up doing very well with only a tiny bit (almost immeasurable) each night, yet it had a definite effect. I would say the most consistent positive report has been happiness and good mood in the kids. I now recommend everyone start with ¼ cc, or 1.5mg for a few nights before going on to the ½ cc, which is 3mg. The adults will stay on 4.5mg, though 3 may be plenty for some of them. The two adults in the study, one with Crohn's and the other with Chronic Fatigue Syndrome, have had very positive responses, and the Crohn's participant says she has not had any problems with her gut since taking this. Dr. Bihari has announced a study with 15 Crohn's with all 15 having a very positive and sustained excellent reaction to the therapy. Other than feeling a little more erotic (this has been reported in some of the MS patients), Jack and I have not noticed any side effects from the use at 4.5mg nightly. We feel pretty good on it; the mood elevation is pretty universal with everyone who takes it, and increased socialization had even been noted in some earlier studies which used much bigger doses. No one else has done a study of ASD kids with these tiny doses, and no one to my knowledge has used the transdermal application at night for the endorphin rush (pulse) that takes place about 2-4 am. All participants who completed the study have indicated they wish to continue. This very small and very preliminary study has been positive enough to warrant a more formal study, and I am trying to get Dr. Vojdani at Immunosciences interested in participating with some immune testing to verify the supposed T2 to T1 shift that I believe is happening for at least some of the children. However, the doses are tiny, the application is easy, it is non-toxic at these doses, and it is relatively inexpensive, so I suspect we will get lots of informal clinical data from those who will be starting to use it now long before we get a formal study conducted. This is by no means a magic bullet, but I am adding it to my armamentarium to try to get the children as immune-efficient as possible. I would appreciate parents reporting on the lists I monitor; for questions, please do not post or phone me personally, but I will try to address questions on the CSB e-list if other parents or your doctors cannot. There is a website www.low dose naltrexone.com that will provide more information to those desiring such. To those of you who participated in the study; please feel free to share on the lists any of your feelings, impressions, and results, good, bad, or indifferent ? the more we know the better for everyone. I THANK ALL OF YOU SO MUCH for being trusting enough to go along with me in trying something new, and I thank Dr. Tyrus for helping devise a successful form to use in our children. BTW, he has as usual offered to share his formula with any other compounding pharmacy who wishes to call him, 912-354-5188. Those of you in my study may want to transfer your prescription to your local compounder to save shipping charges. Jaquelyn McCandless, M.D. 7-2-05 > Hi , > > what is LDN that you mentioned that helped you son with attention and mood? > Thank you > Luana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 Per Dr. Goldberg, This is a " recycled " idea, 10 years old and not safe or appropriate for kids. Thank you, Adriennd Schwartz Dr. Goldberg's office > > Hi , > > > > what is LDN that you mentioned that helped you son with attention > and mood? > > Thank you > > Luana > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Hi Tracey, We started ldn a wk. ago. We have not gotten night wakings, but a few days of waking earlier than usual (the last 2 nights). Day 2 and 3 he slept 13-15 hrs! I do think it makes them tired the first couple of days. We are at 1/2 dose. We have seen just a tad more verbal, but other than that, nothing yet. I think I am going to stay at 1/2 dose one more week. You might want to bring your dose down a bit. > > Hello > > > > We just started TD LDN last night with our 5 yo son. > > He woke up a couple of times, even though we applied it > > at 10:30 (application is between 10-11 pm). > > > > He was not following directions well this morning, and > > our note home from school indicated the same thing there. > > He also told them he was " tired " , which could be expected > > if he didnt sleep well. > > > > Have any of you had these experiences with LDN? I would > > appreciate any/all feedback you have regarding what is > > typical, what to expect and other side effects. Thank you > > in acvance for your helpfulness. > > > > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 HI, There is another list that talks mainly about LDN and you maybe able to get some more inputs there: Autism_LDN/ Thanks. Zhaoping On 10/27/05, Tracey <jimtaylor@...> wrote: > > Hello > > > > We just started TD LDN last night with our 5 yo son. > > He woke up a couple of times, even though we applied it > > at 10:30 (application is between 10-11 pm). > > > > He was not following directions well this morning, and > > our note home from school indicated the same thing there. > > He also told them he was " tired " , which could be expected > > if he didnt sleep well. > > > > Have any of you had these experiences with LDN? I would > > appreciate any/all feedback you have regarding what is > > typical, what to expect and other side effects. Thank you > > in acvance for your helpfulness. > > > > Tracey > > > > > > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Yes I agree with you in that just because someone is labeled " global " delayed doesn't mean that mental retardation is the cause. Your website is excellent, and I have no doubt your children are doing great. I just posted about LDN, thinking maybe it would help someone. I understand your frusturations, just don't think that my posting about LDN is assuming everything is a viral issue. It was not intended to be that way. Just trying to help! Thanks for posting information to help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Hi Bruce: You wrote: >>Many cancers have opiate receptors involved.>> Really? I did read that opiates like morphine, etc. feed cancer. Is this the reason why LDN works? >>Anything such as RCC (what I have), most types of lung cancer, prostate cancer, breast cancer, colon cancer, liver cancer, gallbladder cancer, pancreatic cancer, etc. can all be helped by LDN. It works basically the same way by stimulating the immune system in it circadian cycle which in turn attacks the cancer.>> Bruce, what is RCC? I've got a nasty type of breast cancer and need to do more than just the standard allopathic stuff. >> I get a scrip from the doctor for the standard 50 mg tabs and then simply dissolve in distilled water and keep in the refrigerator. My wife takes it to help with arthritis as well as a preventative for cancer. The compounding pharmacy way is to me a rather expensive thing to do and not necessary unless you don't want to deal with a 5 ml syringe of stuff nightly. To me it is easy and the $7 copay on our insurance is certainly cheap enough. With both of us using it, one scrip lasts nearly 6 months.>> I checked Costco's on-line pharmacy and they don't list naltrexone. What kind of pharmacy do you get yours at? Do you crush one of the tablets in 50mg of water and then use 5ml of that a day? How long can you keep it in the icebox once it's mixed? >>Like anything else, do not expect it to overcome bad dietary practices or other poor lifestyle issues that you can correct yourself. It is a help, not a cure-all. Would not be without it.>> No, unfortunatley there is no " magic bullet " but every little bit helps. ~Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Jim, It is definitely NOT the end of the line. It's just a bad day. Stay the course. I've been on LDN for almost 3 yrs. --Regards, Tom -------------- Original message -------------- From: "Jharbott" <jharbott@...> Anyone; I've been on LDN since 8/25/05 and getting better, today I'm having a bad day, like I used to have when coming down with MS, bad pain, numbness & tingling, is this on the way to recovery or getting close to the end of the line? I have been told I would have some bad times, but, I've been on LDN 7 months, I need some advice on what to do, I ordered Serrapeptase yesterday, will that help when I start taking it, or I might be better by then. Jim in ND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Tom; Thanx, I'm starting to come out of it, this is the first time since I've been on LDN that I felt this bad. I just want to walk again, my therapist says I'm getting there, but how long will it take? I suppose it depends on how bad a person was before starting LDN. I was always a very active person, but , I went down hill fast when the MS hit me. Tom, have you noticed a big change in 3 yrs? Jim Re: [low dose naltrexone] LDN Jim, It is definitely NOT the end of the line. It's just a bad day. Stay the course. I've been on LDN for almost 3 yrs. --Regards, Tom -------------- Original message -------------- From: "Jharbott" <jharbott@...> Anyone; I've been on LDN since 8/25/05 and getting better, today I'm having a bad day, like I used to have when coming down with MS, bad pain, numbness & tingling, is this on the way to recovery or getting close to the end of the line? I have been told I would have some bad times, but, I've been on LDN 7 months, I need some advice on what to do, I ordered Serrapeptase yesterday, will that help when I start taking it, or I might be better by then. Jim in ND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Hi Jim, I have bad pain from MS. The LDN helps some. One thing I tell myself to get by is, Pain is my friend. It means my nerves are still working. The alternative would mean paralysis. Not acceptable. I have read, and my doctor agrees, pain means nerves are healing. So on the bad days I thank God for my pain. Weird, but it helps. Hard to accept having MS. Blessings, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Jim, Tom; Thanx, I'm starting to come out of it, this is the first time since I've been on LDN that I felt this bad. I just want to walk again, my therapist says I'm getting there, but how long will it take? Hard to say, very important to stretch and exercise as best you can..........every day, even 2 or 3 times a day. The more movement the better.......even when you think that you can't. Tom, have you noticed a big change in 3 yrs? There was a significant improvement with urinary urgency and frequency from the very first night. Also an improvement with sensation and feelings in my ankles and feet. No further improvements but those mentioned have remained constant and no further progression and it's been almost 3 years. Regards, Tom Re: [low dose naltrexone] LDN Jim, It is definitely NOT the end of the line. It's just a bad day. Stay the course. I've been on LDN for almost 3 yrs. --Regards, Tom -------------- Original message -------------- From: "Jharbott" <jharbott@...> Anyone; I've been on LDN since 8/25/05 and getting better, today I'm having a bad day, like I used to have when coming down with MS, bad pain, numbness & tingling, is this on the way to recovery or getting close to the end of the line? I have been told I would have some bad times, but, I've been on LDN 7 months, I need some advice on what to do, I ordered Serrapeptase yesterday, will that help when I start taking it, or I might be better by then. Jim in ND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 go here http://www.low dose naltrexone.org/ scroll down and you'll see a list of pharmacies cyndi On Apr 19, 2006, at 12:36 PM, clt4act wrote: > 4-19-06 > Who supplies LDN? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 HIYA ALL! I KNOW I WAS MIA FOR QUITE SOME TIME SO I'M TRYING TO GET CAUGHT BACK UP....ANYWAY, QUICK UPDATE, I HAD MY BABY, SIERRA MY DOG WITH THE BONE CANCER, PUT TO SLEEP. IF YOU THINK GETTING LDN PRESCRIBED FOR A HUMAN IS DIFFICULT, TRY GETTING ANYONE TO PRESCRIBE IT FOR A DOG. I HAVE NO DOUBT THAT IT CONTROLLED HER CANCER AND GAVE ME AN EXTRA YEAR AND A HALF WITH HER. MY THANKS GO TO ALL WHO RESPONDED WITH IDEAS AND THOUGHTS ABOUT HER BUT WITHOUT THE LDN TREATMENT, HER PAIN JUST GOT UNBEARABLE SO JUST ONE MORE THING I HATE ABOUT THE " PROFESSIONAL " LEACHES. SO MANY, MANY THANKS BE WELL, DONNA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 > > HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT > NIGHT BEFORE GOING TO BED. CAROL. > ===== LDN should be taken between the hours of 9PM and 3AM, no earlier than 9PM and no later that 3AM. Go to the LDN website, this is clearly stated there. Also read the Further Q & A page, many fail to do that and there are many questions answered there. http://www.ldninfo.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi Carol, Yes you are right LDN is to be taken at night before bed. Do you think we might have been talking about DLP, which is to be taken in the morning on an empty stomach? You erased the message you were responding to, so I don't know what conversation you are referring to. My best Aletha [low dose naltrexone] ldn > HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT > NIGHT BEFORE GOING TO BED. CAROL. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi Aletha LDN is suppose to be taken on an empty stomach at night before bed, empty meaning 2 hrs. after anything to eat. Kim [low dose naltrexone] ldn > > >> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT >> NIGHT BEFORE GOING TO BED. CAROL. >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi Kim, No the LDN doesn't have to be taken on an empty stomach but it does have to be taken between 9pm and 3am every night. The DLP their talking about has to be taken on an empty stomach in the morning. Hope this helps your confusion... Always A Friend, Crystal Kim Dunmore <kimdunmore@...> wrote: Hi AlethaLDN is suppose to be taken on an empty stomach at night before bed, empty meaning 2 hrs. after anything to eat. Kim [low dose naltrexone] ldn>>>> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT>> NIGHT BEFORE GOING TO BED. CAROL.>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 i think you guys were talking about the dlp because i got confused for a second and then i figured it out cyndi On Apr 28, 2006, at 1:30 PM, Aletha Wittmann wrote: > Hi Carol, > > Yes you are right LDN is to be taken at night before bed. Do you > think we > might have been talking about DLP, which is to be taken in the > morning on an > empty stomach? You erased the message you were responding to, so I > don't > know what conversation you are referring to. > > My best > Aletha > [low dose naltrexone] ldn > > > > HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT > > NIGHT BEFORE GOING TO BED. CAROL. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Donna I am glad the LDN gave her more time with you. So so so sorry to hear that she's gone. She was so lucky to have a close relationship with someone so caring and loving as you , and you must have given her the best life possible.I am sure that wherever her spirit is now, she's grateful and happy for all the love you gave her.May there be more humans like you in this world! Nola Re: [low dose naltrexone] ldn HIYA ALL!I KNOW I WAS MIA FOR QUITE SOME TIME SO I'M TRYING TOGET CAUGHT BACK UP....ANYWAY, QUICK UPDATE, I HAD MYBABY, SIERRA MY DOG WITH THE BONE CANCER, PUT TOSLEEP. IF YOU THINK GETTING LDN PRESCRIBED FOR A HUMANIS DIFFICULT, TRY GETTING ANYONE TO PRESCRIBE IT FOR ADOG. I HAVE NO DOUBT THAT IT CONTROLLED HER CANCER ANDGAVE ME AN EXTRA YEAR AND A HALF WITH HER. MY THANKSGO TO ALL WHO RESPONDED WITH IDEAS AND THOUGHTS ABOUTHER BUT WITHOUT THE LDN TREATMENT, HER PAIN JUST GOTUNBEARABLE SO JUST ONE MORE THING I HATE ABOUT THE"PROFESSIONAL" LEACHES. SO MANY, MANY THANKS :)BE WELL,DONNA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi Kim, You can take LDN on an empty or full stomach. My husband has been on it for just under 1.5 years now and has great success both ways. I don't think anything I have read or heard of has stated that you should have an empty stomach. Let me know if I am wrong here (it would not be the first time). Thanks Aletha [low dose naltrexone] ldn >> >> >>> HI. NOW IM CONFUSED I THOUGHT LDN WAS TO BE TAKEN AT >>> NIGHT BEFORE GOING TO BED. CAROL. >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 > > Hi Aletha > LDN is suppose to be taken on an empty stomach at night before bed, empty > meaning 2 hrs. after anything to eat. Kim -- LDN does NOT have to be taken on an empty stomach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Hi Jim, Did your prescription change at all (did you start on a new bottle?). How about your diet or supplements? Any new stress? If you eliminate these items then I would look at the Serrapeptase. I have noticed when people get allergies or colds or other illnesses they sometimes get flare ups. I hope you continue to feel much better. Please keep us posted. My best Aletha [low dose naltrexone] LDN I need some answers, I started LDN Aug 25, 2005 and have been doing well I thought, my bladder control had gotten better, numbness and tingling all but disappeared, I have had some set backs occasionally, but, the last week I seemed to have lost my bladder control and severe numbness yesterday and last night, today I'm feeling somewhat better. I have been told a person on LDN sort of gets better by reversal of MS symptoms and eventually becomes much better, is there something to this? I have been using Serrapeptase for about three weeks, I don't know what that could be doing, when I feel better I seem to feel much better, almost normal, if I remember what that was again. Any advice will be appreciated. THANX! Jim H. Quote Link to comment Share on other sites More sharing options...
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