Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 I have only just started LDN and for a few weeks I felt sick in the morning after starting I stopped it for a few days but I have now started again I did not feel sick so fingers crossed all will remain calm It may have been because of all the vitamins I was taking so I have cut the hand full down and so far feel better ''Be as well as you can be'' regards Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 I agree with Tom? Anyway I used to take a handfull of vitamins minerals etc. and it was a handfull literally I think that since most of them were in capsul form there was a possibility that the gelatin was forming a gooey lump in my stomache that had a tough time desolving. Then add all the really hard compressed mineral pills (my wife calls them bed pan pills as she works in a nursing home) anyway that was overloading my system to much. I found a real good liquid multivitamin mineral mixture made here in Canada and it seems to work better than any other. I have felt many times better by adding the liquid supplements and dropping my pills out. I have never felt sick from the ldn. but the first filler which was lactose gave me some cramps and nausea the calcium carbonate did the same, So I have to stick with Acidophilus as a filler at least I can ask my pharmacist to fill with what ever I want without a Doctors input It sounds like Holland has some really good points and some not so enjoyable ones. Reg. -------Original Message------- From: low dose naltrexone Date: 02/22/04 08:56:59 low dose naltrexone Subject: [low dose naltrexone] just started LDN I have only just started LDN and for a few weeks I felt sick in the morning after startingI stopped it for a few days but I have now started againI did not feel sick so fingers crossed all will remain calmIt may have been because of all the vitamins I was taking so I have cut the hand full down and so far feel better''Be as well as you can be''regards Dave ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Wow I have tried and tried to find this message on the board Edith but I lost it so I guess you and all the group will get a chance to see this:o) The company is called the awareness corporation and they now have a web site and a company in the States so go googling I did and found it right off! Oh yes its called Daily Complete Good luck Reg. -------Original Message------- From: low dose naltrexone Date: 02/23/04 08:30:54 low dose naltrexone Subject: [low dose naltrexone] Re: just started LDN I have trouble taking pills and would like to know the name of the liquid multivitamin you take. Maybe I can get it in the US or you can tell me how to order it from Canada. Thanks.Edith ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 I'm PPMS, and considering how progressed I was when I started LDN last Nov, I'm happy to NOT be any worse I immediately saw 75% improved bladder function, I sleep very well now, and in general, I just feel better! The only other things I do are Bee Venom Therapy and Keppra for spasticity (it helps a little bit). I do feel as if my progression has been halted. Keep in mind, it is different for everyone. Marcie (PPMS) In a message dated 5/25/2004 10:10:45 AM Central Standard Time, TwisterAlley2@... writes: > > >HI GROUP I HAVE PPMS AND AM REALLY CURIOUS ABOUT OTHER PPMS PERSONS > >RESULTS OR PROBLEMS WITH THE LDN. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 A woman who posts at GoodShape's and BrainTalk has had PPMS for many years, though LDN couldn't correct the damage already done by MS, she has been exacerbation free for over 4 years now on LDN treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 On Tue, 25 May 2004 16:07:13 -0000, you wrote: > >> >> >HI GROUP I HAVE PPMS AND AM REALLY CURIOUS ABOUT OTHER PPMS PERSONS >> >RESULTS OR PROBLEMS WITH THE LDN. >> >> My experience is that LDN helps PPMS for a few months but it does not >> stop it. After that the PPMS overtakes the LDN and progress continues. >> The stiff legs get worse and so the dose of LDN has to be reduced. The >> problem then is that it may now have any effect at all. A short break >> from LDN helps but the initial effect is never repeated. >> >> Steve > >=========== > > >Steve you're wrong. I am PPMS 14 years straight. I have just spent 11 1/2 months exacerbation/progression free on 4.5mg of LDN. Real PPMS does not have exacerbations at all. PPMS with exacerbations is Relapsing Progressive MS. RPMS is less common than RRMS & PPMS. I would expect that the relapsing component of RPMS could well benefit from LDN. I was diagnosed in 1995 after about ten years of gradually " slowing down " but I have never had an exacerbation. I have been on LDN since 13th October 2002 and though my MS got a bit better initially it started progressing again after a few months. I must conclude that LDN does not stop PPMS. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 > >> > >> >HI GROUP I HAVE PPMS AND AM REALLY CURIOUS ABOUT OTHER PPMS PERSONS > >> >RESULTS OR PROBLEMS WITH THE LDN. > >> > >> My experience is that LDN helps PPMS for a few months but it does not > >> stop it. After that the PPMS overtakes the LDN and progress continues. > >> The stiff legs get worse and so the dose of LDN has to be reduced. The > >> problem then is that it may now have any effect at all. A short break > >> from LDN helps but the initial effect is never repeated. > >> > >> Steve > > > >=========== > > > > > >Steve you're wrong. I am PPMS 14 years straight. I have just spent 11 1/2 months exacerbation/progression free on 4.5mg of LDN. > > Real PPMS does not have exacerbations at all. PPMS with exacerbations > is Relapsing Progressive MS. RPMS is less common than RRMS & PPMS. I > would expect that the relapsing component of RPMS could well benefit > from LDN. > > I was diagnosed in 1995 after about ten years of gradually " slowing > down " but I have never had an exacerbation. I have been on LDN since > 13th October 2002 and though my MS got a bit better initially it > started progressing again after a few months. I must conclude that LDN > does not stop PPMS. > > Steve =============== Steve, What mg are you using and what is your filler? I stopped having exacerbations back in 1989 but continued to steadily progress. The reason I say I have not had an exacerbation since starting LDN is that I am in remission for the first time in 15 years. I have never experienced a remission since December 1989. I was so badly aching with severe muscle spasticity and neuropathic pain the day before I started LDN that I had been considering Botox Injections, Morphine and IV steroids all at the same time. Each year brought more progression of muscle spasticity and neuropathic pain and increased fatigue. I stopped developing new symptoms after Dec. 1989. If I do have a relapse of a new symptom on LDN, I will consider it an exacerbation and progression, relapse of old symptoms on LDN is not an exacerbation, LDN cannot correct damage already done by MS. Jeanie Zeis is a classic example of a PPMS MS'er on LDN for 4 years without any progression since starting LDN. She was steadily progressing before taking LDN. Leading people to think LDN will not halt PPMS is just as bad as what the NMSS wrote. I'm not saying all MS'ers will see a halt in progression on LDN but at least try it and see what results you get because we are all not the same. Maybe because I refused all the CRAB's all these years was possibly a plus for me and my exercise program too. I will never know. All I know is I'm a good 50% better on LDN than I was because I had already passed through the gates of HELL a few days prior to my first LDN pill. My bladder improved, spasticity improved, neuropathic pain eased a good bit, fatigue improved, eyesight improved by opthalmology exam, migraines went away, I can walk in stores now without a mobility scooter, stand a good while, clean my own house, blow dry my own hair again, climb steps, use weight room at YMCA, ride a bicycle for 1st time in 14 yrs. Unfortunately my severe hearing loss hasn't improved. I was unable to do all of the things listed above the day before I took my first LDN capsule. I got extreme positive results overnight on 4.5mg of LDN. I played with fillers and started with Lactose but decided to play with other fillers and I found all my symptoms returning when I tried Calcium Carbonate, I'm allergic to Avicel so couldn't use Skip's pharmacy, so I went back to my Lactose filler and all is fantastic again at 4.5mg. Keeping myself in good physical shape as possible with having Chronic Progressive MS with year round pool therapy 3 and sometimes 5 days a week no less that 2 hours in pool while there and refusing all CRAB's, who knows, may have played in my favor. I forced myself to the pool no matter how bad I felt. Only clinical trials will be able to determine these factors. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 On Tue, 25 May 2004 19:18:53 -0000, you wrote: >Steve, > >What mg are you using and what is your filler? I've tried various doses with Calcium carbonate filler. I started on 4.5 but had to reduce to 3 when my legs got too stiff. >I stopped having exacerbations back in 1989 but continued to steadily progress. That's not PPMS. You started with RRMS and then changed to RPMS. I am certain PPMS is a different illness to RRMS, SPMS and RPMS. > >Leading people to think LDN will not halt PPMS is just as bad as what the NMSS wrote. That's not my intention. I have never said don't try LDN. It always worth a go and it's nice and cheap! >I'm not saying all MS'ers will see a halt in progression on LDN but at least try it and see what results you >get because we are all not the same. I have tried have been on LDN for well over a year. It stopped working after about three months. >Maybe because I refused all the CRAB's all these years was possibly a plus for me and my exercise program too. CRAB's are not used for PPMS. >I will never know. All I know is I'm a good 50% better on LDN than I was because I had already passed through >the gates of HELL a few days prior to my first LDN pill. My bladder improved, spasticity improved, >neuropathic pain eased a good bit, fatigue improved, eyesight improved by opthalmology exam, migraines went >away, I can walk in stores now without a mobility scooter, stand a good while, clean my own house, blow dry my >own hair again, climb steps, use weight room at YMCA, ride a bicycle for 1st time in 14 yrs. Unfortunately my >severe hearing loss hasn't improved. I was unable to do all of the things listed above the day before I took >my >first LDN capsule. I got extreme positive results overnight on 4.5mg of LDN. I played with fillers and started with Lactose but decided to play with other fillers and I found all my symptoms returning when I tried Calcium Carbonate, I'm allergic to Avicel so couldn't use Skip's pharmacy, so I went back to my Lactose filler and all is fantastic again at 4.5mg. > >Keeping myself in good physical shape as possible with having Chronic Progressive MS with year round pool >therapy 3 and sometimes 5 days a week no less that 2 hours in pool while there and refusing all CRAB's, who >knows, may have played in my favor. I forced myself to the pool no matter how bad I felt. Only clinical >trials will be able to determine these factors. Everything you tell me shouts RPMS. I think you were misdiagnosed as PPMS from the start. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Hi Steve .. I really wish that the LDN was working better for you. My husband is PPMS .. declined yearly .. no relapses really but under stress he would progress faster and never gain anything back. Without a doubt he is PPMS .. very grim prognosis. I know of two others PPMS on 4.5mg also. All 3 here have had LDN stop the progression. the only thing I can think of in your case is that you are not on 4.5mg as they are .. just a thought .. it could be a big factor .. but I do think it works for PPMS. All the very Best > > > >Steve, > > > >What mg are you using and what is your filler? > > I've tried various doses with Calcium carbonate filler. I started on > 4.5 but had to reduce to 3 when my legs got too stiff. > > >I stopped having exacerbations back in 1989 but continued to steadily progress. > > That's not PPMS. You started with RRMS and then changed to RPMS. I am > certain PPMS is a different illness to RRMS, SPMS and RPMS. > > > > >Leading people to think LDN will not halt PPMS is just as bad as what the NMSS wrote. > > That's not my intention. I have never said don't try LDN. It always > worth a go and it's nice and cheap! > > >I'm not saying all MS'ers will see a halt in progression on LDN but at least try it and see what results you >get because we are all not the same. > > I have tried have been on LDN for well over a year. It stopped working > after about three months. > > >Maybe because I refused all the CRAB's all these years was possibly a plus for me and my exercise program too. > > CRAB's are not used for PPMS. > > >I will never know. All I know is I'm a good 50% better on LDN than I was because I had already passed through >the gates of HELL a few days prior to my first LDN pill. My bladder improved, spasticity improved, >neuropathic pain eased a good bit, fatigue improved, eyesight improved by opthalmology exam, migraines went >away, I can walk in stores now without a mobility scooter, stand a good while, clean my own house, blow dry my >own hair again, climb steps, use weight room at YMCA, ride a bicycle for 1st time in 14 yrs. Unfortunately my >severe hearing loss hasn't improved. I was unable to do all of the things listed above the day before I took >my > >first LDN capsule. I got extreme positive results overnight on 4.5mg of LDN. I played with fillers and started with Lactose but decided to play with other fillers and I found all my symptoms returning when I tried Calcium Carbonate, I'm allergic to Avicel so couldn't use Skip's pharmacy, so I went back to my Lactose filler and all is fantastic again at 4.5mg. > > > >Keeping myself in good physical shape as possible with having Chronic Progressive MS with year round pool >therapy 3 and sometimes 5 days a week no less that 2 hours in pool while there and refusing all CRAB's, who >knows, may have played in my favor. I forced myself to the pool no matter how bad I felt. Only clinical >trials will be able to determine these factors. > > Everything you tell me shouts RPMS. I think you were misdiagnosed as > PPMS from the start. > > Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 On Tue, 25 May 2004 21:27:53 -0000, wrote: >The only >thing I can think of in your case is that you are not on 4.5mg as >they are .. just a thought .. it could be a big factor .. but I do >think it works for PPMS. >All the very Best > It's not the dose. I started on 4.5mg and was on that dose for eight months. The leg cramps got too bad so I had to drop to 3mg. At one point I had to drop to 1.5mg to stop the continuous cramp. I have tried going back up to 4.5mg but the side effects are too painful. Cramp is listed as a side effect for Naltrexone but I never expected it at a low dose. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 Your quite right Steve I have discovered the same but also I think we must remember that this never has been called a cure. Are you expecting to go back to the way you were before m.s, or are you forgetting what it was like before the ldn? Everything I have I have to work to keep I still have m.s. and even a brush with a sore throat causes a slight return to pre ldn status, Just yesterday I forgot to take my fairly large handfull of suppliments that I have been taking now for many months. Today wasn't that good but tomorrow I will get back on track again. I have done this before and the world didn't come to an end but I wished it would! The next days were good but always seemed to be lacking. I think that is why PPMS patients are not studied, we would blow all studies out of the park. Kinda like trying to make pedophiles into Sunday school teachers.You may get a small level of success but by and large it won't work. I think about the new Copaxone study, did they use any PPMS patients on that one ? I think not! Your probably not progressing but then it will take a long time to verify this. This is how I justify my bad days anyway. Reg. -------Original Message------- From: low dose naltrexone Date: 05/25/04 15:12:33 low dose naltrexone Subject: Re: [low dose naltrexone] Re: just started ldn On Tue, 25 May 2004 16:07:13 -0000, you wrote:>>> >> >HI GROUP I HAVE PPMS AND AM REALLY CURIOUS ABOUT OTHER PPMS PERSONS >> >RESULTS OR PROBLEMS WITH THE LDN. >> >> My experience is that LDN helps PPMS for a few months but it does not>> stop it. After that the PPMS overtakes the LDN and progress continues.>> The stiff legs get worse and so the dose of LDN has to be reduced. The>> problem then is that it may now have any effect at all. A short break>> from LDN helps but the initial effect is never repeated.>> >> Steve>>===========>>>Steve you're wrong. I am PPMS 14 years straight. I have just spent 11 1/2 months exacerbation/progression free on 4.5mg of LDN. Real PPMS does not have exacerbations at all. PPMS with exacerbationsis Relapsing Progressive MS. RPMS is less common than RRMS & PPMS. Iwould expect that the relapsing component of RPMS could well benefitfrom LDN.I was diagnosed in 1995 after about ten years of gradually "slowingdown" but I have never had an exacerbation. I have been on LDN since13th October 2002 and though my MS got a bit better initially itstarted progressing again after a few months. I must conclude that LDNdoes not stop PPMS. Steve ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 True Reg .. my husband would really confuse a study as he has good days and bad days but the bottom line is that he has not yet reached a point worse than his worst day pre LDN. He has not progressed but it can still really suck at times. I am excited about the goat serum .. All the Best > >> > >> >HI GROUP I HAVE PPMS AND AM REALLY CURIOUS ABOUT OTHER PPMS PERSONS > >> >RESULTS OR PROBLEMS WITH THE LDN. > >> > >> My experience is that LDN helps PPMS for a few months but it does not > >> stop it. After that the PPMS overtakes the LDN and progress continues. > >> The stiff legs get worse and so the dose of LDN has to be reduced. The > >> problem then is that it may now have any effect at all. A short break > >> from LDN helps but the initial effect is never repeated. > >> > >> Steve > > > >=========== > > > > > >Steve you're wrong. I am PPMS 14 years straight. I have just spent 11 1/2 > months exacerbation/progression free on 4.5mg of LDN. > > Real PPMS does not have exacerbations at all. PPMS with exacerbations > is Relapsing Progressive MS. RPMS is less common than RRMS & PPMS. I > would expect that the relapsing component of RPMS could well benefit > from LDN. > > I was diagnosed in 1995 after about ten years of gradually " slowing > down " but I have never had an exacerbation. I have been on LDN since > 13th October 2002 and though my MS got a bit better initially it > started progressing again after a few months. I must conclude that LDN > does not stop PPMS. > > Steve > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Hi back at ya, big dog!!! Will be hoping right along with you that you get the help you are looking for. I did. Let us know how you do, and welcome. Cinders Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 > Hi back at ya, big dog!!! > > Will be hoping right along with you that you get the help you are > looking for. I did. Let us know how you do, and welcome. > > Cinders I just started a few weeks ago and still waiting for legs to feel better..... Hope you have better luck than i have had. Elana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 > Hi back at ya, big dog!!! > > Will be hoping right along with you that you get the help you are > looking for. I did. Let us know how you do, and welcome. > > Cinders HI, MY NAME IS JODYGIRL. I DONT DO LDN. I DO COPAXONE, AND NOVANTRONE. IM GOING ON THE 15TH FOR MY 11TH INFUSION OF CHEMO. I'VE HAD GREAT RESULTS FROM IT ALSO. I NOW, HAVEAROUND 3 PEOPLE STARTING LDN. I GAVE THEM COURAGE ALSO. IT SOUNDS LIKE AN EXCELLENT DRUG TO START. I FIGURE I WAIT TILL IM THROUGH W/ NOVANTRONE FIRST AND HOW LONG, IT'LL DO ITS JOB? NO ANWER FROM DR EITHER. BUT NEWBIES TO " LDN " CONGRADULATIONS ON TAKING A DIFFERENT STEP!!! JODYGIRL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Congats and tell me....... what is your starting amount? How long have u been on ldn? and anything to report yet? If I am being to nosey just let me know! Reg. -------Original Message------- From: low dose naltrexone Date: 08/04/04 05:35:10 low dose naltrexone Subject: [low dose naltrexone] Just started LDN I have M-S I am hoping for so release from the leg's and being so tired all the time!!!!!!!! And just saying Hello ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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