Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 So when exactly is it time to give up? _________________________________________________________________ Free Alerts : Be smart - let your information find you ! http://alerts.live.com/Alerts/Default.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 Hi Dennis, Did you join the group to learn more about LDN and especially why it didn't work for you? There are many group members with long-term experience who regularly pitch in to help newcomers. I'm sure they'd all try to help figure out what went wrong, but they'd need you to open up a bit more about your experience. Perhaps if you could provide specific details of your MS history, diagnosis/diagnostic tests, MS type, diet, medications (including LDN), other treatments, supplements, etc - just in case something's been missed? Regards, Cris > > > > > > IF anyone would like 3.0mgs of LDN that I got from Skips Pharmacy, > > > please let me know. My daughter is no longer taking it because it > > made > > > her worse than she had ever been in the 11 years that she has had > > MS and > > > she never got better. She is doing soooo much better since > > stopping it. > > > She's actually walking with no assistance now. We're going to wait > > > after the clinical trial to see what happens. Right now it's just > > so > > > much that is unknown about it right now. I received a 90 day > > supply > > > from skip in January and my daughter only took it for about a week. > > > However, she was actually on the LDN for 2 months. I know there > > will be > > > some of you that say that we let the fear win out but, we had to > > do what > > > was best for her. We've changed her diet and supplements. She's > > seeing > > > a Natural Path, a nutritionist and a Chiropractor. > > > > > > > > > > > > Thanks and good luck to you all > > > > > >====== > > > > I hate your daughter quit LDN after being on LDN only a week. I > > just told the lady Dr. Gironi in Italy doing the LDN trial in MS > > that increased symptoms can take place in the first 3 months on LDN > > and listed a few of those symptoms. I wrote that these symptoms > > generally fade away as time passes and endorphins rise and level > > out. She wrote me back and said that what I described is exactly > > what happened to 4-5 of the patients she has started LDN and thanked > > me for that valuable information. Your daughter should possibly > > start on 1.0mg for 2 weeks, then up to 1.5mg for 3 weeks then > > up .5mg every month till she reaches 3mg or 4.5mg. She jumped ship > > way too soon. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 Jackie and Dennis, I wonder if both you and Jackie’s daughter were going to have a major flare up anyway and it just happened when you stated the Ldn. I too would go to the lowest dose and stay there and go up very slowly. LDN has helped so many, I would not give up on it. Fear Factor, what do you have to lose, no side effects, etc….If you are both feeling better, do the 1 mg, follow the slow regime stated in the other email. Conni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 Lyme Disease Misdiagnosed as Multiple Sclerosis http://www.lymeinfo.net/multiplesclerosis.html Always, Crystal LDN_Users Group Owner CrystalAngel Novelties To Support MS,TM and LDN Crystal's MS,TM & LDN Website Crystal's LDN Support Group MS & TM Spouse & Caregiver Support Group Crystal's MySpace Re: [low dose naltrexone] Re: LDN LDN did nothing for me and I took it over a year. it turns out I have lyme disease, but I had to have an Igenex test and see a LLMD (lyme literate MD). a regular doc or regular lab tests won't do it. several people who took LDN with no results, actually had lyme, about 15 i believe. Arlene ------------ -- Original message ------------ -- From: dlarussa <dlarussabellsouth (DOT) net> I was in the same boat and quit after one month. I am still left one month later with new symptoms and old aggravated symptoms that were caused by my trial with LDN. While I have no doubt that many receive benefits from LDN, I am sure that others just do not well. This may be a result of different factors, such as age, existing nerve damage, status of the disease, gender, etc.I have a great deal of difficulty with the notion that someone should continue in the face of adverse results although I did just that and will regret it if I don't get back to baseline.Dennis Bren wrote: >> IF anyone would like 3.0mgs of LDN that I got from Skips Pharmacy,> please let me know. My daughter is no longer taking it because it made> her worse than she had ever been in the 11 years that she has had MS and> she never got better. She is doing soooo much better since stopping it.> She's actually walking with no assistance now. We're going to wait> after the clinical trial to see what happens. Right now it's just so> much that is unknown about it right now. I received a 90 day supply> from skip in January and my daughter only took it for about a week.> However, she was actually on the LDN for 2 months. I know there will be> some of you that say that we let the fear win out but, we had to do what> ; ; was best for her. We've changed her diet and supplements. She's seeing> a Natural Path, a nutritionist and a Chiropractor.> > > > Thanks and good luck to you all > >======I hate your daughter quit LDN after being on LDN only a week. I just told the lady Dr. Gironi in Italy doing the LDN trial in MS that increased symptoms can take place in the first 3 months on LDN and listed a few of those symptoms. I wrote that these symptoms generally fade away as time passes and endorphins rise and level out. She wrote me back and said that what I described is exactly what happened to 4-5 of the patients she has started LDN and thanked me for that valuable information. Your daughter should possibly start on 1.0mg for 2 weeks, then up to 1.5mg for 3 weeks then up .5mg every month till she reaches 3mg or 4.5mg. She jumped ship way too soon. No need to miss a message. Get email on-the-go with for Mobile. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 > > So when exactly is it time to give up? =========== Is LDN not stopping your progression? Are you having new, never experienced symptoms since starting LDN? How long have you been on LDN and what indicators have you had that LDN is not halting progression? What illness do you have? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 Hi Bren, I have MS and can't really say if the symtoms have been halted or if LDN has re-introduced balance issues, or speech problems. I've been taking LDN since mid february. I took it briefly for about a month last year and quit because I felt like crap. Micki _________________________________________________________________ Your Space. Your Friends. Your Stories. Share your world with Windows Live Spaces. http://discoverspaces.live.com/?loc=en-CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 > > Hi Bren, I have MS and can't really say if the symtoms have been halted or > if LDN has re-introduced balance issues, or speech problems. I've been > taking LDN since mid february. I took it briefly for about a month last year > and quit because I felt like crap. > > Micki -------------- Dr. Bihari recommends giving LDN 9 months trial before giving up on it. In the first 3 months on LDN you might experience some adverse symptoms. I had numb hands on it for 3 weeks upon starting LDN and I experienced extra stiffness in the calves of my legs for 3 solid months, I rode these adverse symptoms out and they faded away and I have done fantastic now for 3 1/2 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 Thanks Bren, I really needed a time frame rather than hearing the generic " give it some time " Micki _________________________________________________________________ Buy what you want when you want it on Sympatico / MSN Shopping http://shopping.sympatico.msn.ca/content/shp/?ctId=2,ptnrid=176,ptnrdata=081805 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 Jackie I know you mean well, but giving/selling a person's prescription to someone else is illegal and dangerous. If you are not going to use it, flush it down the toilet to dispose of it. mjh Posted by: "Jackie " Jackie.@... phillipsj7 Mon Feb 12, 2007 9:53 am (PST) IF anyone would like 3.0mgs of LDN that I got from Skips Pharmacy,please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 The LDN that I had has been disposed of Jackie 'To the world you might be one person, but to one person you just might the world' From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of foxhillers@... Sent: Wednesday, February 14, 2007 5:15 AM low dose naltrexone Subject: [low dose naltrexone] Re:LDN Jackie I know you mean well, but giving/selling a person's prescription to someone else is illegal and dangerous. If you are not going to use it, flush it down the toilet to dispose of it. mjh Posted by: " Jackie " Jackie.Mckenneys phillipsj7 Mon Feb 12, 2007 9:53 am (PST) IF anyone would like 3.0mgs of LDN that I got from Skips Pharmacy, please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 thanks kathy i will hang in there as i have not heard or seen anything bad about ldn. i know itis only the start for me with ldn and my body needs time to adjust. thankyou john [low dose naltrexone] ldn hi everyone i have been on ldn for ms for just over a month now ,started on 1mg now on 2mg,sleeping better now but have not noticed any other changes,well the good thing is i have not noticed any further symptons.do you have to be on 3mg and above to feel any great benefit.john Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Some people would say halting the progression of ms is the same as reversing it since they tell us it is a progressive neurological condition. Hang in there and give your body a chance to heal and reverse some of the damage. Honor your body with the foods you eat and the way you treat yourself. I have met so many people with ms who seemed like they took care of everyone besides themselves. Sorry to venture off but it should only get better for you. There is hope everywhere. Best, Kathy [low dose naltrexone] ldn hi everyone i have been on ldn for ms for just over a month now ,started on 1mg now on 2mg,sleeping better now but have not noticed any other changes,well the good thing is i have not noticed any further symptons.do you have to be on 3mg and above to feel any great benefit.john Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 Hi ,I have been on LDN since Nov 2006, so not very long. I did 2 nights at 4.5mg with great relief of my symptoms. However I had some physical reactions the 2nd dose and had to lower my dose. Since the first two doses of LDN I have experimented with doses of 1.5-4mg. I was at 3mg for many weeks, but find I have severe headaches and flu like symptoms most of the time at that level. I am now back to 2 mgs, at which I feel pretty good symptom wise and have no bad reactions. I do not have the severe spasms, most all numbness and pain are gone at this level. I can walk a bit better than prior LDN, but still not very far. I do have more energy though. So, yes, if you go by me, one can get pretty good symptom relief at a low level. I had been pretty much a basket case. I can go without my cane or crutches for short trips; something I would never have been able to do before. I know 3mg is the lowest for stopping further deterioration, but at 2mg I am able to be fairly functional and feel pretty good. I'll take that. I can always try to go higher some time in the future. BTransverse Myelitis, optic neuritis, possible msOn 2/18/07, john <kerrigan869@... > wrote: hi everyone i have been on ldn for ms for just over a month now ,started on 1mg now on 2mg,sleeping better now but have not noticed any other changes,well the good thing is i have not noticed any further symptons.do you have to be on 3mg and above to feel any great benefit. john Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 > > On 2/18/07, john <kerrigan869@...> wrote: > > > > hi everyone i have been on ldn for ms for just over a month > > now ,started on 1mg now on 2mg,sleeping better now but have not > > noticed any other changes,well the good thing is i have not noticed any > > further symptons.do you have to be on 3mg and above to feel any great > > benefit. > > > > john ============ LDN's main purpose is to halt disease progression, not improve symptoms, if one gets symptom improvement on LDN then that's an added plus. Dr. Bihari feels that MS progression is best halted with doses of 3.0mg and up to 4.5mg, any dose less than 3.0mg most likely won't halt MS progression. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 > > hi everyone i have been on ldn for ms for just over a month > now ,started on 1mg now on 2mg,sleeping better now but have not > noticed any other changes,well the good thing is i have not noticed any > further symptons.do you have to be on 3mg and above to feel any great > benefit. > > john > Hi , I've also been on LDN just over a month now. I started on the 3 mg dose of LDN on 1/17/07. The next morning after taking my first dose, my balance was greatly improved, I could bend my left knee while walking (hadn't done that in a year) and I had increased energy. During this past month I realized that for me, Baclofen (for spasticity) and LDN do not work well together. I tapered off the Baclofen and feel much better. My knee is stiff at times, but lately I've noticed it's stiffer when it's colder outside. Today it snowed and my knee was stiffer than a few days ago when it was 50 degrees. I'm a little nervous about possible return of old symptoms. Be so far, LDN has been the best thing for me. A friend of mine started the 3 mg dose of LDN a week ago and hasn't really noticed any changes, but her attitude, like yours, is great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 stupid question, but does anyone know if i can be helped of peri/menopausal symptoms with ldn too? k [low dose naltrexone] Re: ldnlow dose naltrexone > > >> > hi everyone i have been on ldn for ms for just over a month > > now ,started on 1mg now on 2mg,sleeping better now but have > not > > noticed any other changes,well the good thing is i have not > noticed > any > > further symptons.do you have to be on 3mg and above to feel > any great > > benefit.> > > > john> >NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses 's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless. Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 I can say LDN seems to bring on more frequent periods, like monthly. I personally was peri-menopausal and not getting a period on a timely basis and now I do. I have heard of people that have not had a period in years start getting them after starting LDN. I believe can answer more info on this as well. -- Re: [low dose naltrexone] Re: ldn stupid question, but does anyone know if i can be helped of peri/menopausal symptoms with ldn too? k [low dose naltrexone] Re: ldnlow dose naltrexone > > >> > hi everyone i have been on ldn for ms for just over a month > > now ,started on 1mg now on 2mg,sleeping better now but have > not > > noticed any other changes,well the good thing is i have not > noticed > any > > further symptons.do you have to be on 3mg and above to feel > any great > > benefit.> > > > john> >NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses 's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 i guess i wasn't very clear on this, sorry. what i meant was--will it help with freakin mood swings? k [low dose naltrexone] Re: ldn> low dose naltrexone > > > > > >> > > hi everyone i have been on ldn for ms for just over a month > > > now ,started on 1mg now on 2mg,sleeping better now but have > > not > > > noticed any other changes,well the good thing is i have not > > noticed > > any > > > further symptons.do you have to be on 3mg and above to feel > > any great > > > benefit.> > > > > > john> > >> > > > NOTE: Next time you want to google something, use: > Goodsearch.com. There is> an account set up for Grace Fellowship and all searches using > Goodsearch(which uses 's search engine) will result in > about one cent being> donated to Grace Fellowship. Not much, but it can become > significant if we> and others we tell consistently use Goodsearch for all our > searches. For> example, 100 people using Goodsearch for two searches a day will > net us $730> 00 a year. When you go to the site just type in Grace Fellowship > OrthodoxPresbyterian Church as the benefactor. This is right > below the search bar.> You can also change the benefactor with each search and help other> non-profits of your choice (if they have an account). Thanks for your> consideration and God bless. > > > > > > > NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses 's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless. Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Kate Perhaps you should do a Zinc Test. Read what Dr Lawrence says on the website www.msrc.co.uk He can also supply zinc in liquid form to carry out the test. Tommy From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of katelloydkidz@... Sent: 20 February 2007 15:11 low dose naltrexone Subject: Re: [low dose naltrexone] Re: ldn i guess i wasn't very clear on this, sorry. what i meant was--will it help with freakin mood swings? k Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Are mood swings something a person with a normally orchestrating immune system would get ? then, sure, it'll help, it'll make 'em just like everyone else's. Maybe the swings will be shorter and more precise. Seems like predicting LDN and any given individual is like predicting the weather, the best report is Post. Re: [low dose naltrexone] Re: ldn i guess i wasn't very clear on this, sorry. what i meant was--will it help with freakin mood swings? k Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 My wife went through menopause about 4 years ago. Since starting on LDN about 2 years ago, her period has come back. She considers that to be the one negative to taking LDN. Bruce Guilmette, PhD Author: THERE'S MORE TO LIFE THAN JUST LIVING, A Personal Story About Cancer Survival Survive Cancer Foundation, Inc. http://survivecancerfoundation.org Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 (NIV) From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of and IselbornSent: Tuesday, February 20, 2007 7:20 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: ldn I can say LDN seems to bring on more frequent periods, like monthly. I personally was peri-menopausal and not getting a period on a timely basis and now I do. I have heard of people that have not had a period in years start getting them after starting LDN. I believe can answer more info on this as well. -- Re: [low dose naltrexone] Re: ldn stupid question, but does anyone know if i can be helped of peri/menopausal symptoms with ldn too? k [low dose naltrexone] Re: ldnlow dose naltrexone > > >> > hi everyone i have been on ldn for ms for just over a month > > now ,started on 1mg now on 2mg,sleeping better now but have > not > > noticed any other changes,well the good thing is i have not > noticed > any > > further symptons.do you have to be on 3mg and above to feel > any great > > benefit.> > > > john> >NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses 's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 I find this so interesting. It seems that LDN could be tweaking the pituitary gland and reversing some of the biological aging. What is you explanation for her return of ministration? I always find your thoughts so detailed and informative. Best wishes, Kathy [low dose naltrexone] Re: ldnlow dose naltrexone > > >> > hi everyone i have been on ldn for ms for just over a month > > now ,started on 1mg now on 2mg,sleeping better now but have > not > > noticed any other changes,well the good thing is i have not > noticed > any > > further symptons.do you have to be on 3mg and above to feel > any great > > benefit.> > > > john> >NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses 's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 Bruce that is amazing! Thanks for your reply and God Bless you and your family. Best, Kathy [low dose naltrexone] Re: ldnlow dose naltrexone > > >> > hi everyone i have been on ldn for ms for just over a month > > now ,started on 1mg now on 2mg,sleeping better now but have > not > > noticed any other changes,well the good thing is i have not > noticed > any > > further symptons.do you have to be on 3mg and above to feel > any great > > benefit.> > > > john> >NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses 's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 with the re-starting of the monthly periods, there may be a bonus: THE ESTROGEN BOOST THAT HELPS PREVENT OSTEOPOROSIS - ESPECIALLY FOR THOSE UNDER 50 YRS OF AGE!! MARSHIRISAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 of course, individual cases have to be discussed with your doctors - if you're trying to prevent estrogen boost!!! marshirisAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
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