Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Thank you all who responded to my post. I appreciate all the info. I do have a couple of questions. What are, if any, the common side effects of using LDN? Also, are there any long term risks associated with taking LDN? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 > > Thank you all who responded to my post. I appreciate all the info. I > do have a couple of questions. What are, if any, the common side > effects of using LDN? Also, are there any long term risks associated > with taking LDN? > ============= Dr. Bihari has had a MS patient on LDN over 15 years with no problems from long-term use of LDN. Dr. Bihari and his wife take LDN as a disease preventative for over 12 years with no adverse effects from long-term use. Below should answer your other question. For those of you in the first few months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms can possibly occur. ======== By: Dr. Bob Lawrence When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms. Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days. Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work. In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified. Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively & quot;catch up & quot; that the normal balance is restored and symptoms once again diminish and improve. Dr. M R Lawrence Posted by Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 I've been out of the loop for a few months, but have decided to rejoin the group. 1. Elavil and LDN are not incompatible. Dr. Bihari prescribed it to me for pain last year. (It didn't help.) 2. LDN may help optic neuritis. I had it twice before being diagnosed with MS, and in both cases it lasted for 2-3 months and went away on its own. 3. LDN does not stay in the body, so stopping it for a day may have nothing to do with depression. 4. DL-phenylaline: It's helped some people with depression. Dr. Bihari has recommended it because it boosts endorphin production. 5. I could not agree more with the person who recommended going to the LDN website FIRST. Please do your homework and then ask questions. People are always willing to answer them here, but you have to be willing to do a little work also. www.ldninfo.org. 6. And finally, please remember to delete prior messages before hitting "send." Many people receive the Daily Digest--all of the day's e-mails--in one e-mail. When you don't erase old messages, it means scrolling down through pages and pages. Thank you. ________________________________________________________________________ Try Juno Platinum for Free! Then, only $9.95/month! Unlimited Internet Access with 1GB of Email Storage. Visit http://www.juno.com/value to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Hi , Welcome back! I wondered where you had gotten to. Has anyone proven ldn and elavil are compatiable? I have no idea what ldn is compatable with but thought doing a process of elimination would help. Next will be my celexa. I guess what I am getting at there is not much info out there on ldn. Meaning there is the main site and other splinter groups but when it gets right down to it nobody knows very much. We know its not compatible with opiates. We know when to take it and what fillers to use. We know that it helps autoimmune diseases. We read the smaller studies that are out. We have s book to refer to. We have Dr. Lawrence who himself has ms. We know that 2300 here are what? Still taking ldn? Maybe. has an excellent site that has the same info as the ldn group. Plus info on her mom and how this is working for cancer. If ldn itself cannot get large studies how do we know what its compatable with? Does anyone know what happens when we raise our endorphins? Is there anyway to measure that? It just seems when anyone has the guts to say this is not working. You get ganged up saying oh its not the ldn. Its the filler. It's the compounding pharmacy its hormonal, its your diet, Its cause you have yeast and ldn does not help yeast or lymes disease. Do a coffee enema or a liver flush. Don't dare mention ldn nots a natural drug. I genuinally care for people and I sure don't want to stress anyone or upset them. It just seems like if you don't have the same experiance no one believes you. It would be nice if we all followed the same pattern. In reality that doesn't happen. You can't put people in a neat little package and say feel this. You can blame this on my mood swings that are no longer occuring. It may be easier to do that. Just remember when everything is said and done we are all here for the same thing. To feel better. low dose naltrexone , " carrieland2@... " <carrieland2@...> wrote: > > I've been out of the loop for a few months, but have decided to rejoin the group. > 1. Elavil and LDN are not incompatible. Dr. Bihari prescribed it to me for pain last year. (It didn't help.) > 2. LDN may help optic neuritis. I had it twice before being diagnosed with MS, and in both cases it lasted for 2-3 months and went away on its own. > 3. LDN does not stay in the body, so stopping it for a day may have nothing to do with depression. > 4. DL-phenylaline: It's helped some people with depression. Dr. Bihari has recommended it because it boosts endorphin production. > 5. I could not agree more with the person who recommended going to the LDN website FIRST. Please do your homework and then ask questions. People are always willing to answer them here, but you have to be willing to do a little work also. www.ldninfo.org. > 6. And finally, please remember to delete prior messages before hitting " send. " Many people receive the Daily Digest--all of the day's e-mails--in one e-mail. When you don't erase old messages, it means scrolling down through pages and pages. > Thank you. > > > > > _____________________________________________________________________ ___ > Try Juno Platinum for Free! Then, only $9.95/month! > Unlimited Internet Access with 1GB of Email Storage. > Visit http://www.juno.com/value to sign up today! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 , Are you still off the LDN? If so, how many days? Not to point fingers or anything, but it appears that most of the posts regarding mood swings are coming from women. Maybe it's a combination. Maybe the increased production of endorphins also increases hormone levels. What you said about not knowing much about LDN is an interesting point. I think that's why it's important to run clinical trials on LDN. Maybe it would answer some questions. It's also probably one of the reasons why doctors are uncomfortable prescribing it. On Mar 19, 2006, at 3:00 PM, wrote: > Hi , Welcome back! I wondered where you had gotten to. Has > anyone proven ldn and elavil are compatiable? I have no idea what > ldn is compatable with but thought doing a process of elimination > would help. Next will be my celexa. I guess what I am getting at > there is not much info out there on ldn. Meaning there is the main > site and other splinter groups but when it gets right down to it > nobody knows very much. We know its not compatible with opiates. > We know when to take it and what fillers to use. We know that it > helps autoimmune diseases. We read the smaller studies that are > out. We have s book to refer to. We have Dr. Lawrence who > himself has ms. We know that 2300 here are what? Still taking > ldn? Maybe. has an excellent site that has the same info as > the ldn group. Plus info on her mom and how this is working for > cancer. If ldn itself cannot get large studies how do we know what > its compatable with? Does anyone know what happens when we raise > our endorphins? Is there anyway to measure that? > > It just seems when anyone has the guts to say this is not working. > You get ganged up saying oh its not the ldn. Its the filler. It's > the compounding pharmacy its hormonal, its your diet, Its cause you > have yeast and ldn does not help yeast or lymes disease. Do a > coffee enema or a liver flush. Don't dare mention ldn nots a > natural drug. > > I genuinally care for people and I sure don't want to stress anyone > or upset them. It just seems like if you don't have the same > experiance no one believes you. It would be nice if we all followed > the same pattern. In reality that doesn't happen. You can't put > people in a neat little package and say feel this. You can blame > this on my mood swings that are no longer occuring. It may be > easier to do that. Just remember when everything is said and done > we are all here for the same thing. To feel better.  > low dose naltrexone , " carrieland2@... " > <carrieland2@...> wrote: > > > > I've been out of the loop for a few months, but have decided to > rejoin the group. > > 1. Elavil and LDN are not incompatible. Dr. Bihari prescribed it > to me for pain last year. (It didn't help.) > > 2. LDN may help optic neuritis. I had it twice before being > diagnosed with MS, and in both cases it lasted for 2-3 months and > went away on its own. > > 3. LDN does not stay in the body, so stopping it for a day may > have nothing to do with depression. > > 4. DL-phenylaline: It's helped some people with depression. Dr. > Bihari has recommended it because it boosts endorphin production. > > 5. I could not agree more with the person who recommended going > to the LDN website FIRST. Please do your homework and then ask > questions. People are always willing to answer them here, but you > have to be willing to do a little work also. www.ldninfo.org. > > 6. And finally, please remember to delete prior messages before > hitting " send. "  Many people receive the Daily Digest--all of the > day's e-mails--in one e-mail. When you don't erase old messages, it > means scrolling down through pages and pages. > > Thank you. > > > > > > > > > > > _____________________________________________________________________ > ___ > > Try Juno Platinum for Free! Then, only $9.95/month! > > Unlimited Internet Access with 1GB of Email Storage. > > Visit http://www.juno.com/value to sign up today! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Hi , This will be night 3 that I have skipped. Its okay to say something, without putting in not pointing fingers. I know your not. I also feel badly for saying what I did. I did feel it but did not want to upset anyone. As much as I am frustrated, I am sure others are who read and can't fix the problem, are equally as frustrated. I know people want to help one another and thats a good thing. You may be very right in that the increase in endorphins also increases hormone production. I am thinking there must be a reason some where. Thats why I thought elavil or antidepressants. It was something that maybe I could rectify by say increasing my antidepresant. I guess because I was experiancing mood swings and still depression the likely spot to look was my antidepressant. I think its very important to run clinical trials. Not only to answer questions but also so people don't have as much as a problem obtaining it. I can bet my big wig ex neuro./scientist wouldn't touch it. He is heading stem cells now and always seems to be dealing with the newest thing. When I first met him he was recruiting for betaseron. My current neuro. who had no problem prescribing the ldn is probably more geared toward looking into ldn. I'm anxious to see her this spring. I was all set to go into the tysibri study but they had a problem with my veins. That may have been a godsend or maybe not? I hear its back out in the US with a warning. Brain cancer 1 in 1000. How scary is that for a side effect. Thanks for helping me trouble shoot ! Take Care >> > Are you still off the LDN? If so, how many days? Not to point fingers > or anything, but it appears that most of the posts regarding mood > swings are coming from women. Maybe it's a combination. Maybe the > increased production of endorphins also increases hormone levels. > > What you said about not knowing much about LDN is an interesting point. > I think that's why it's important to run clinical trials on LDN. > Maybe it would answer some questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 CELEXA is my bet... don't know what else is on your list. http://www.healthsquare.com/newrx/CEL1079.HTM As I stated previously.. .IF LDN is orchestrating your immune system, taking other meds would be as if someone who didn't have MS, didn't have an AI disease, didn't have depression, didn't have ANYTHING wrong with them, taking it. JMHO JMHO JMHO You're right, nobody knows much, all we have are opinions. You say people 'gang up'... people are TRYING TO HELP and it's getting to the point again where it's going to be: GOOD LUCK, NO MORE OPINIONS FROM ME.... BYE would you rather get opinions, or have the other complaint "I post, but people ignore me waaaaaaaaaaaa" [low dose naltrexone] Re: LDN questions Hi , Welcome back! I wondered where you had gotten to. Has anyone proven ldn and elavil are compatiable? I have no idea what ldn is compatable with but thought doing a process of elimination would help. Next will be my celexa. I guess what I am getting at there is not much info out there on ldn. Meaning there is the main site and other splinter groups but when it gets right down to it nobody knows very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006  those things may not come out in cynical trials either... we hear a lot from people taking other meds that were "possibles" in the trials... maybe this, maybe that. the truth comes out in the usage, not the trials. Re: [low dose naltrexone] Re: LDN questions ,Are you still off the LDN? If so, how many days? Not to point fingers or anything, but it appears that most of the posts regarding mood swings are coming from women. Maybe it's a combination. Maybe the increased production of endorphins also increases hormone levels.What you said about not knowing much about LDN is an interesting point. I think that's why it's important to run clinical trials on LDN. Maybe it would answer some questions. It's also probably one of the reasons why doctors are uncomfortable prescribing it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 As a psychologist, let me congratulate you on your wonderful Freudian slip – you wrote cynical trials instead of clinical trials – and there is so much truth in your slip, as anyone who has seen the film " The Constant Gardener " knows. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of LarryGC Sent: Monday, March 20, 2006 10:52 AM To: low dose naltrexone Subject: Re: [low dose naltrexone] Re: LDN questions those things may not come out in cynical trials either... we hear a lot from people taking other meds that were " possibles " in the trials... maybe this, maybe that. the truth comes out in the usage, not the trials. Re: [low dose naltrexone] Re: LDN questions , Are you still off the LDN? If so, how many days? Not to point fingers or anything, but it appears that most of the posts regarding mood swings are coming from women. Maybe it's a combination. Maybe the increased production of endorphins also increases hormone levels. What you said about not knowing much about LDN is an interesting point. I think that's why it's important to run clinical trials on LDN. Maybe it would answer some questions. It's also probably one of the reasons why doctors are uncomfortable prescribing it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 sorry to disappoint you, it wasn't a slip, I wrote it that way. the slip is in my humorous semantical spoonerisms I usually FIX before sending, but this one I left cause I thought it was cuter RE: [low dose naltrexone] Re: LDN questions As a psychologist, let me congratulate you on your wonderful Freudian slip – you wrote cynical trials instead of clinical trials – and there is so much truth in your slip, as anyone who has seen the film "The Constant Gardener" knows. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of LarryGCSent: Monday, March 20, 2006 10:52 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: LDN questions those things may not come out in cynical trials either... we hear a lot from people taking other meds that were "possibles" in the trials... maybe this, maybe that. the truth comes out in the usage, not the trials. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Heheh! that was a great one:) Re: [low dose naltrexone] Re: LDN questions ,Are you still off the LDN? If so, how many days? Not to point fingers or anything, but it appears that most of the posts regarding mood swings are coming from women. Maybe it's a combination. Maybe the increased production of endorphins also increases hormone levels.What you said about not knowing much about LDN is an interesting point. I think that's why it's important to run clinical trials on LDN. Maybe it would answer some questions. It's also probably one of the reasons why doctors are uncomfortable prescribing it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 My favorite "slip" was when someone referred to the MS exacerbation as an exasperation. Totally fitting!! Peace and Blessings ~*~ Akiba ~*~ Pragmatic Visionary Thy Feet, My Feet Dance the Dance of Divinity -- RE: [low dose naltrexone] Re: LDN questions As a psychologist, let me congratulate you on your wonderful Freudian slip – you wrote cynical trials instead of clinical trials – and there is so much truth in your slip, as anyone who has seen the film "The Constant Gardener" knows. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of LarryGCSent: Monday, March 20, 2006 10:52 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: LDN questions those things may not come out in cynical trials either... we hear a lot from people taking other meds that were "possibles" in the trials... maybe this, maybe that. the truth comes out in the usage, not the trials. Re: [low dose naltrexone] Re: LDN questions ,Are you still off the LDN? If so, how many days? Not to point fingers or anything, but it appears that most of the posts regarding mood swings are coming from women. Maybe it's a combination. Maybe the increased production of endorphins also increases hormone levels.What you said about not knowing much about LDN is an interesting point. I think that's why it's important to run clinical trials on LDN. Maybe it would answer some questions. It's also probably one of the reasons why doctors are uncomfortable prescribing it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 , one of the advantages to having a doctor like Bernie Bihari is that he's had so much experience with LDN. So when he told me that Elavil was compatible with LDN, I trusted him and have found no reason not to continue doing so. Of course LDN may not work for everyone, but there used to be a lot of people on this site who have been taking LDN for more than two years. They were a great source of information, as still is. I understand where you're coming from, BUT please understand that things like dosage and fillers CAN affect how you feel, both emotionally and physically. ________________________________________________________________________ Try Juno Platinum for Free! Then, only $9.95/month! Unlimited Internet Access with 1GB of Email Storage. Visit http://www.juno.com/value to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Hi , I do understand. Can you try and understand where I am coming from? I know of 8 close email friends who had to discontinue the ldn due to depression and mood swings. I was warned not to touch it but I am human and had to try it myself. I didn't believe someone when they said the crabs drugs are not good for you. I think its human nature to think oh maybe it will work for me. Well I have my answer. This is not a case of my other meds. being the problem. Things were going fine until I introduced the ldn three months ago. It started out well and went bad from there. How can I in good concious tell people its perfectly safe with elavil or anything else. Bottom line is none of us know for sure. LDN has not been tested for combinations with other drugs. Given the fact that we are all different confuses us even more to the culprit (sp?). One think I do know is 8 people in my circle of email friends plus who have had these problems here are saying yes it does cause depression or mood swings. Now in the grand scheme of things thats a very high number. We don't hear from everyone here. The 2300 people here are a small part of a very large picture of people with ms and chronic illnesses. When someone has the side effect of depression or mood swings I'm sure not going to tell them to a) stop there antidepressant. blame everything but the ldn c) add another med. we don't know alot about. d) suggest they need counselling. Which by the way was suggested to me by the esteemed Dr. Glick Gluck? who when I replyed asking if Dr. Bihari would be able to answer this all of a sudden did a 360 and talked with Dr. Bihari during his physio treatment. Now why tell me that? Its not something I need to know. Maybe it was to make what he was saying believable? He also said try lowering it and please tell us how you make out. People who are having problems with depression do not need to be pushed further. I'm sorry I can't in good concience dismiss how there are feeling. I also will not blame everything but the ldn. No one knows enough about it to be playing doctor. Further more I am thinking its against the law to do phone consults. Something is not right here. Also how come we have to email someone to remove us now? Before you could leave on your own and have access to the member list Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 You know something Larry? In spite of you saying you can control your moods, it hasn't been apparent here lately. You've said you will not answer people then go ahead and answer 5 posts in a row of moody hateful things. Believe it or not I worry about you. For as much as you say your moods swings are under control, there clearly not. Maybe sometime you will see this for yourself. Um in the big scheme of things larry if I know 8 people in my little internet circle, wanna bet that if everyone posted here you would hear of more. Then look at the even bigger picture 2400 people here are not alot of people given this medication is suppose to work with little side effects. Your a heart attack waiting to happen. I hope you can get these mood swings under control. I mean that with nothing but the sincerest wishes. Take Care > > Good luck to ya. I guess 8 people get depressed, many others have had their depression go away. I'm quite happy with my life since 4/17/03. Too bad for those who don't get good results. Sometimes I wonder .... but whatever... > > 50% of the people will disagree 50% of the time on 50% of the topics... 8 people, God be with you all. > > > [low dose naltrexone] Re: LDN questions > > > Hi , > > I do understand. Can you try and understand where I am coming from? I know of 8 close email friends who had to discontinue the ldn due to depression and mood swings. I was warned not to touch it but I am human and had to try it myself. I didn't believe someone when they said the crabs drugs are not good for you. I think its human nature to think oh maybe it will work for me. > > Well I have my answer. This is not a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 , I have no idea if you'll see this or not, but just in case... 1. It is not illegal for a doctor to do phone consultations. 2. I have been on LDN for 2-1/2 years, probably longer than most people on this board. The majority of people who have participated here have not experienced feelings of depression as a result of LDN. You are clearly very angry and I can't help but wonder if your anger is misplaced. I never said that LDN does NOT cause depression. This forum was started as a place to share information. 3. Almost everyone who's dealt with Dr. Bihari and/or Dr. Gluck have found them to be persons of integrity. 4. On several occasions, Aletha has suggested trying DL-phenylaline as a remedy for depression. Have you? Quote Link to comment Share on other sites More sharing options...
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