Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 thanks so much for all the helpful tips. i have been using a soft toothbrush along with the alcohol for nicolas' DOC band and quite honestly, it doesn't smell as bad after i clean it. i will give the l'oreal kids shampoo a try though. i just hope that it won't give him any trouble since he has eczema. we really try to keep the DOC band off no more than 1 hour each day. his plagiocephaly isn't so bad so we're hoping that he won't have to wear it longer than 10 weeks as the ortho is predicting. also, i was reading some of the exchanges about insurance coverage. i guess we are very lucky because we got our baby's DOC band just in time before we switched insurance companies and oxford health plan (our previous insurance) covered all expenses completely. i believe CT has a good relationship with oxford health plan. right now we have healthnet and we were advised to wait until our casting is done before switching because apparently, healthnet gives CT a hard time with coverage. jeanette mom of nicolas - DOC band since 3/27 > > > > Hello everyone! I'm very pleased that there is an egroup for > mothers > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > months old and he started wearing the DOC band on Monday - March > 27. > > Unfortunately we had to bring him back 2 days later to adjust the > band > > since he had 3 pressure points that were just getting too pink. > > > > My question for everyone is this: Is it normal for his head and > the > > DOC band to have this somewhat " foul " odor when I take it off? > I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe > his > > sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 thanks so much for all the helpful tips. i have been using a soft toothbrush along with the alcohol for nicolas' DOC band and quite honestly, it doesn't smell as bad after i clean it. i will give the l'oreal kids shampoo a try though. i just hope that it won't give him any trouble since he has eczema. we really try to keep the DOC band off no more than 1 hour each day. his plagiocephaly isn't so bad so we're hoping that he won't have to wear it longer than 10 weeks as the ortho is predicting. also, i was reading some of the exchanges about insurance coverage. i guess we are very lucky because we got our baby's DOC band just in time before we switched insurance companies and oxford health plan (our previous insurance) covered all expenses completely. i believe CT has a good relationship with oxford health plan. right now we have healthnet and we were advised to wait until our casting is done before switching because apparently, healthnet gives CT a hard time with coverage. jeanette mom of nicolas - DOC band since 3/27 > > > > Hello everyone! I'm very pleased that there is an egroup for > mothers > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > months old and he started wearing the DOC band on Monday - March > 27. > > Unfortunately we had to bring him back 2 days later to adjust the > band > > since he had 3 pressure points that were just getting too pink. > > > > My question for everyone is this: Is it normal for his head and > the > > DOC band to have this somewhat " foul " odor when I take it off? > I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe > his > > sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hello Jeanette If Nicolas has eczema, you can also try an aveeno product. We used to take that stuff for my daughter Willow and it did great with the eczema. Also use the high % alcohol. The pharmacies usually have that behind the counter. Good luck to you Sandy Willow's Mom Torticollis resolved Cranio Grad (Germany) > > Hello everyone! I'm very pleased that there is an egroup for mothers > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > months old and he started wearing the DOC band on Monday - March 27. > Unfortunately we had to bring him back 2 days later to adjust the band > since he had 3 pressure points that were just getting too pink. > > My question for everyone is this: Is it normal for his head and the > DOC band to have this somewhat " foul " odor when I take it off? I've > been following the specific instructions that they said. I use 91% > alcohol to clean the inside of the band and I even take it off and > clean it twice a day instead of once a day because I couldn't stand > the smell. I did notice that his head especially the back is very > sweaty when I take the band off. My husband mentioned that maybe his > sweat is affected by the fact that I use Dove soap for his head > instead of a baby shampoo. > > I would appreciate your input. > > > Thanks, > Jeanette > (Huntington, CT) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hello Jeanette If Nicolas has eczema, you can also try an aveeno product. We used to take that stuff for my daughter Willow and it did great with the eczema. Also use the high % alcohol. The pharmacies usually have that behind the counter. Good luck to you Sandy Willow's Mom Torticollis resolved Cranio Grad (Germany) > > Hello everyone! I'm very pleased that there is an egroup for mothers > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > months old and he started wearing the DOC band on Monday - March 27. > Unfortunately we had to bring him back 2 days later to adjust the band > since he had 3 pressure points that were just getting too pink. > > My question for everyone is this: Is it normal for his head and the > DOC band to have this somewhat " foul " odor when I take it off? I've > been following the specific instructions that they said. I use 91% > alcohol to clean the inside of the band and I even take it off and > clean it twice a day instead of once a day because I couldn't stand > the smell. I did notice that his head especially the back is very > sweaty when I take the band off. My husband mentioned that maybe his > sweat is affected by the fact that I use Dove soap for his head > instead of a baby shampoo. > > I would appreciate your input. > > > Thanks, > Jeanette > (Huntington, CT) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 -J- I had the same questions my son sweats like a pig and what i do, is take off the band every 4 hours wipe down his head and the band with a cloth, during bath time, I take off the band clean it with alcohol and put it outside to air out for 1 hour. Eventually his body will regulate. also I stopped over dressing my son. -- In Plagiocephaly , " Jeanette Galvez-Piscioniere " <jsgalvez@...> wrote: > > Hello everyone! I'm very pleased that there is an egroup for mothers > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > months old and he started wearing the DOC band on Monday - March 27. > Unfortunately we had to bring him back 2 days later to adjust the band > since he had 3 pressure points that were just getting too pink. > > My question for everyone is this: Is it normal for his head and the > DOC band to have this somewhat " foul " odor when I take it off? I've > been following the specific instructions that they said. I use 91% > alcohol to clean the inside of the band and I even take it off and > clean it twice a day instead of once a day because I couldn't stand > the smell. I did notice that his head especially the back is very > sweaty when I take the band off. My husband mentioned that maybe his > sweat is affected by the fact that I use Dove soap for his head > instead of a baby shampoo. > > I would appreciate your input. > > > Thanks, > Jeanette > (Huntington, CT) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 -J- I had the same questions my son sweats like a pig and what i do, is take off the band every 4 hours wipe down his head and the band with a cloth, during bath time, I take off the band clean it with alcohol and put it outside to air out for 1 hour. Eventually his body will regulate. also I stopped over dressing my son. -- In Plagiocephaly , " Jeanette Galvez-Piscioniere " <jsgalvez@...> wrote: > > Hello everyone! I'm very pleased that there is an egroup for mothers > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > months old and he started wearing the DOC band on Monday - March 27. > Unfortunately we had to bring him back 2 days later to adjust the band > since he had 3 pressure points that were just getting too pink. > > My question for everyone is this: Is it normal for his head and the > DOC band to have this somewhat " foul " odor when I take it off? I've > been following the specific instructions that they said. I use 91% > alcohol to clean the inside of the band and I even take it off and > clean it twice a day instead of once a day because I couldn't stand > the smell. I did notice that his head especially the back is very > sweaty when I take the band off. My husband mentioned that maybe his > sweat is affected by the fact that I use Dove soap for his head > instead of a baby shampoo. > > I would appreciate your input. > > > Thanks, > Jeanette > (Huntington, CT) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi ! Thanks for the link to that website. You saved me a lot of trouble looking for 99% alcohol in local pharmacies. I gave Nicolas a bath tonight and decided to try the Mustela shampoo. I figured I'd start with something hypoallergenic and see how it goes from there. Appreciate your input. Thanks, Jeanette - mom of Nicolas (DOC band since 3/27) > > > > Hello everyone! I'm very pleased that there is an egroup for mothers > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > months old and he started wearing the DOC band on Monday - March 27. > > Unfortunately we had to bring him back 2 days later to adjust the band > > since he had 3 pressure points that were just getting too pink. > > > > My question for everyone is this: Is it normal for his head and the > > DOC band to have this somewhat " foul " odor when I take it off? I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe his > > sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi ! Thanks for the link to that website. You saved me a lot of trouble looking for 99% alcohol in local pharmacies. I gave Nicolas a bath tonight and decided to try the Mustela shampoo. I figured I'd start with something hypoallergenic and see how it goes from there. Appreciate your input. Thanks, Jeanette - mom of Nicolas (DOC band since 3/27) > > > > Hello everyone! I'm very pleased that there is an egroup for mothers > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > months old and he started wearing the DOC band on Monday - March 27. > > Unfortunately we had to bring him back 2 days later to adjust the band > > since he had 3 pressure points that were just getting too pink. > > > > My question for everyone is this: Is it normal for his head and the > > DOC band to have this somewhat " foul " odor when I take it off? I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe his > > sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Thank you, Sandy! I tried the Mustela hypoallergenic shampoo tonight. If that doesn't work, I will take you up and try an Aveeno product. I just ordered 99% alcohol tonight. Will keep you guys posted. Jeanette - mom of Nicolas (DOC band since 3/27) > > > > Hello everyone! I'm very pleased that there is an egroup for > mothers > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > months old and he started wearing the DOC band on Monday - March > 27. > > Unfortunately we had to bring him back 2 days later to adjust the > band > > since he had 3 pressure points that were just getting too pink. > > > > My question for everyone is this: Is it normal for his head and > the > > DOC band to have this somewhat " foul " odor when I take it off? > I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe > his > > sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Thank you, Sandy! I tried the Mustela hypoallergenic shampoo tonight. If that doesn't work, I will take you up and try an Aveeno product. I just ordered 99% alcohol tonight. Will keep you guys posted. Jeanette - mom of Nicolas (DOC band since 3/27) > > > > Hello everyone! I'm very pleased that there is an egroup for > mothers > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > months old and he started wearing the DOC band on Monday - March > 27. > > Unfortunately we had to bring him back 2 days later to adjust the > band > > since he had 3 pressure points that were just getting too pink. > > > > My question for everyone is this: Is it normal for his head and > the > > DOC band to have this somewhat " foul " odor when I take it off? > I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe > his > > sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I was able to find 91% alcohol at the store on the shelf; how does that compare to 99%? Does it work just as well? Thanks! Molly California Nicolas, 5.5 months, tort & plagio, getting STARband in April , 3 , 6 Re: New member Hi ! Thanks for the link to that website. You saved me a lot of trouble looking for 99% alcohol in local pharmacies. I gave Nicolas a bath tonight and decided to try the Mustela shampoo. I figured I'd start with something hypoallergenic and see how it goes from there. Appreciate your input. Thanks, Jeanette - mom of Nicolas (DOC band since 3/27) > > > > Hello everyone! I'm very pleased that there is an egroup for > > mothers of babies with plagiocephaly like me. My son, Nicolas, is 5 > > 1/2 months old and he started wearing the DOC band on Monday - March > > 27. Unfortunately we had to bring him back 2 days later to adjust > > the band since he had 3 pressure points that were just getting too > > pink. > > > > My question for everyone is this: Is it normal for his head and the > > DOC band to have this somewhat " foul " odor when I take it off? I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe > > his sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I was able to find 91% alcohol at the store on the shelf; how does that compare to 99%? Does it work just as well? Thanks! Molly California Nicolas, 5.5 months, tort & plagio, getting STARband in April , 3 , 6 Re: New member Hi ! Thanks for the link to that website. You saved me a lot of trouble looking for 99% alcohol in local pharmacies. I gave Nicolas a bath tonight and decided to try the Mustela shampoo. I figured I'd start with something hypoallergenic and see how it goes from there. Appreciate your input. Thanks, Jeanette - mom of Nicolas (DOC band since 3/27) > > > > Hello everyone! I'm very pleased that there is an egroup for > > mothers of babies with plagiocephaly like me. My son, Nicolas, is 5 > > 1/2 months old and he started wearing the DOC band on Monday - March > > 27. Unfortunately we had to bring him back 2 days later to adjust > > the band since he had 3 pressure points that were just getting too > > pink. > > > > My question for everyone is this: Is it normal for his head and the > > DOC band to have this somewhat " foul " odor when I take it off? I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe > > his sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Jeanette, You're welcome! Let us know how hte Mustela shampoo works for you. > > > > > > Hello everyone! I'm very pleased that there is an egroup for mothers > > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > > months old and he started wearing the DOC band on Monday - March 27. > > > Unfortunately we had to bring him back 2 days later to adjust the band > > > since he had 3 pressure points that were just getting too pink. > > > > > > My question for everyone is this: Is it normal for his head and the > > > DOC band to have this somewhat " foul " odor when I take it off? I've > > > been following the specific instructions that they said. I use 91% > > > alcohol to clean the inside of the band and I even take it off and > > > clean it twice a day instead of once a day because I couldn't stand > > > the smell. I did notice that his head especially the back is very > > > sweaty when I take the band off. My husband mentioned that maybe his > > > sweat is affected by the fact that I use Dove soap for his head > > > instead of a baby shampoo. > > > > > > I would appreciate your input. > > > > > > > > > Thanks, > > > Jeanette > > > (Huntington, CT) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Jeanette, You're welcome! Let us know how hte Mustela shampoo works for you. > > > > > > Hello everyone! I'm very pleased that there is an egroup for mothers > > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > > months old and he started wearing the DOC band on Monday - March 27. > > > Unfortunately we had to bring him back 2 days later to adjust the band > > > since he had 3 pressure points that were just getting too pink. > > > > > > My question for everyone is this: Is it normal for his head and the > > > DOC band to have this somewhat " foul " odor when I take it off? I've > > > been following the specific instructions that they said. I use 91% > > > alcohol to clean the inside of the band and I even take it off and > > > clean it twice a day instead of once a day because I couldn't stand > > > the smell. I did notice that his head especially the back is very > > > sweaty when I take the band off. My husband mentioned that maybe his > > > sweat is affected by the fact that I use Dove soap for his head > > > instead of a baby shampoo. > > > > > > I would appreciate your input. > > > > > > > > > Thanks, > > > Jeanette > > > (Huntington, CT) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Hi Jeanette, Welcome to the group. na, DOC Grad X2 Feb 04 Kiersten, DOC Grad 4/4/06, Tort Resolved www.thefilyaws.com/plagio/plagio.html > > Hello everyone! I'm very pleased that there is an egroup for mothers > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > months old and he started wearing the DOC band on Monday - March 27. > Unfortunately we had to bring him back 2 days later to adjust the band > since he had 3 pressure points that were just getting too pink. > > My question for everyone is this: Is it normal for his head and the > DOC band to have this somewhat " foul " odor when I take it off? I've > been following the specific instructions that they said. I use 91% > alcohol to clean the inside of the band and I even take it off and > clean it twice a day instead of once a day because I couldn't stand > the smell. I did notice that his head especially the back is very > sweaty when I take the band off. My husband mentioned that maybe his > sweat is affected by the fact that I use Dove soap for his head > instead of a baby shampoo. > > I would appreciate your input. > > > Thanks, > Jeanette > (Huntington, CT) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Thanks, ! Jeanette - mom of Nicolas (DOC band since 3/27) > > > > Hello everyone! I'm very pleased that there is an egroup for > mothers > > of babies with plagiocephaly like me. My son, Nicolas, is 5 1/2 > > months old and he started wearing the DOC band on Monday - March > 27. > > Unfortunately we had to bring him back 2 days later to adjust the > band > > since he had 3 pressure points that were just getting too pink. > > > > My question for everyone is this: Is it normal for his head and the > > DOC band to have this somewhat " foul " odor when I take it off? I've > > been following the specific instructions that they said. I use 91% > > alcohol to clean the inside of the band and I even take it off and > > clean it twice a day instead of once a day because I couldn't stand > > the smell. I did notice that his head especially the back is very > > sweaty when I take the band off. My husband mentioned that maybe > his > > sweat is affected by the fact that I use Dove soap for his head > > instead of a baby shampoo. > > > > I would appreciate your input. > > > > > > Thanks, > > Jeanette > > (Huntington, CT) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 Hi Joyce, My name is Pam and I am from NC. I have been on LDN a couple of weeks or so. I have what looks and acts like secondary progressive MS. God Bless my neuro for refusing to label it as such. He doesn't want it to influence my thinking or that of insurance, Medicare or others. They may use nomenclature/diagnosis to refuse services and/or money. He says just call it MS. However, the relapses I have had never go all the way back to "better." I was diagnosed at age 52 in 01. Never before had any symptoms to give me any idea I would even have MS. I did have back pain and brain fog after a car accident 4 years before, but I thought it was from the crash. Guess not. I have taken Copaxone and the others, but they didn't help. Too many bad side effects as well. Steroids helped when I had exacerbation's, but I can no longer take them. I have become type II Diabetic. Maybe even from the steroids. I am so glad to be on LDN. It has given me so much more energy. Right now I have Candida so that kinda cancels out the full benefits of LDN, but soon as I get rid of that I'll be improving. Keep reading what others have to say about this stuff. It has really helped them. I am hopeful. I have been bedridden for over a year. What have I got to lose? I'm going for it! Hope you do too. Best to you, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Hi Joyce, Everyone seems to experience different levels of help with LDN and different areas of help. I will send you a copy of the welcome e-mail in just a moment. I hope you will find some help in answering your questions. It has been fantastic for my husband. We know of 2 people personally that have been lucky enough to get out the wheel chair. Of course not everyone experiences such a great relief, but most people get a significant degree of help from LDN. I always tell everyone that you won't know what it will do for you unless you try it. But you should stay on it for at least 6 months to really see if it will help as a few have found it has taken that long to see the full spectrum of new relief. Many also take supplements and change their diets along with taking LDN. These things seem to work well with LDN as they further help the immune system. Best of luck Aletha [low dose naltrexone] New Member > Hi, I have been lurking for the past couple of weeks. I was diagnosed > about 2 years ago at age 55 with secondary progressive MS. Seems I > missed the relapse-remission phase of the disease except for one optic > neuritis about 6 years ago. > > I would be interested in knowing if any members have secondary > progressive MS and how the LDN helped or didn't help. Right now I am > on methotrexate but the MS is progressing and my doctor here in NYC > would like me to try Copaxon. However, he is willing to let me go on > LDN also and says he has a few patients taking it and that the primary > improvement seems to be with fatigue issues. My main problem is with > balance and leg weakness. > > Thanks for the help, > Joyce > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Thank you for all of the information Aletha. Have any of you continued on other medications while you take the LDN? I am nervous about discontinuing other meds until I see if the LDN helps me. Joyce > > Hi Joyce, > > Everyone seems to experience different levels of help with LDN and different > areas of help. I will send you a copy of the welcome e-mail in just a > moment. I hope you will find some help in answering your questions. > > It has been fantastic for my husband. We know of 2 people personally that > have been lucky enough to get out the wheel chair. Of course not everyone > experiences such a great relief, but most people get a significant degree of > help from LDN. I always tell everyone that you won't know what it will do > for you unless you try it. But you should stay on it for at least 6 months > to really see if it will help as a few have found it has taken that long to > see the full spectrum of new relief. Many also take supplements and change > their diets along with taking LDN. These things seem to work well with LDN > as they further help the immune system. > > Best of luck > Aletha > [low dose naltrexone] New Member > > > > Hi, I have been lurking for the past couple of weeks. I was diagnosed > > about 2 years ago at age 55 with secondary progressive MS. Seems I > > missed the relapse-remission phase of the disease except for one optic > > neuritis about 6 years ago. > > > > I would be interested in knowing if any members have secondary > > progressive MS and how the LDN helped or didn't help. Right now I am > > on methotrexate but the MS is progressing and my doctor here in NYC > > would like me to try Copaxon. However, he is willing to let me go on > > LDN also and says he has a few patients taking it and that the primary > > improvement seems to be with fatigue issues. My main problem is with > > balance and leg weakness. > > > > Thanks for the help, > > Joyce > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Thank you Pam, it certainly is wonderful to have support from a group like this. I hope the LDN helps both of us and we can report the improvement here! I am currently taking celebrex for arthritis due to changes in gait from the MS. Does anyone here know if that medication would cause a problem with the LDN? Have you all discontinued the baclafen also? Joyce > > Hi Joyce, > My name is Pam and I am from NC. I have been on LDN a couple of weeks or so. > I have what looks and acts like secondary progressive MS. God Bless my neuro > for refusing to label it as such. He doesn't want it to influence my thinking > or that of insurance, Medicare or others. They may use > nomenclature/diagnosis to refuse services and/or money. He says just call it MS. However, the > relapses I have had never go all the way back to " better. " I was diagnosed at age > 52 in 01. Never before had any symptoms to give me any idea I would even > have MS. I did have back pain and brain fog after a car accident 4 years > before, but I thought it was from the crash. Guess not. > I have taken Copaxone and the others, but they didn't help. Too many bad > side effects as well. Steroids helped when I had exacerbation's, but I can no > longer take them. I have become type II Diabetic. Maybe even from the steroids. > I am so glad to be on LDN. It has given me so much more energy. Right now I > have Candida so that kinda cancels out the full benefits of LDN, but soon as > I get rid of that I'll be improving. Keep reading what others have to say > about this stuff. It has really helped them. I am hopeful. I have been bedridden > for over a year. What have I got to lose? I'm going for it! Hope you do too. > Best to you, > Pam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 The methotrexate is very toxic. Try to read Dr. Neiper's thoughts on that drug by contacting the library in Wisconsin. Their number is 608-647-6513. There are many other things. Why not try Procarin with the LDN or get the Calcium EAP packet from the library. Best Wishes, Kathy [low dose naltrexone] New Member > Hi, I have been lurking for the past couple of weeks. I was diagnosed > about 2 years ago at age 55 with secondary progressive MS. Seems I > missed the relapse-remission phase of the disease except for one optic > neuritis about 6 years ago. > > I would be interested in knowing if any members have secondary > progressive MS and how the LDN helped or didn't help. Right now I am > on methotrexate but the MS is progressing and my doctor here in NYC > would like me to try Copaxon. However, he is willing to let me go on > LDN also and says he has a few patients taking it and that the primary > improvement seems to be with fatigue issues. My main problem is with > balance and leg weakness. > > Thanks for the help, > Joyce > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 I know it is toxic Kathy, but I have an excellent neurologist and we are trying different treatments for me. He had suggested methotrexate and if it had stopped the progression I would have been very happy. I have no adverse side effects but the MS is progressing and that is why I am trying the LDN, and if that does not work I will try Copaxon. In short, I am open to many things, but I do trust my doctor, so for now I will go along with his advice. I start the LDN tomorrow I hope, and I will keep you all posted on my experiences with it. Very exciting!! Joyce > > The methotrexate is very toxic. Try to read Dr. Neiper's thoughts on that > drug by contacting the library in Wisconsin. Their number is 608- 647-6513. > There are many other things. Why not try Procarin with the LDN or get the > Calcium EAP packet from the library. Best Wishes, Kathy > [low dose naltrexone] New Member > > > > Hi, I have been lurking for the past couple of weeks. I was diagnosed > > about 2 years ago at age 55 with secondary progressive MS. Seems I > > missed the relapse-remission phase of the disease except for one optic > > neuritis about 6 years ago. > > > > I would be interested in knowing if any members have secondary > > progressive MS and how the LDN helped or didn't help. Right now I am > > on methotrexate but the MS is progressing and my doctor here in NYC > > would like me to try Copaxon. However, he is willing to let me go on > > LDN also and says he has a few patients taking it and that the primary > > improvement seems to be with fatigue issues. My main problem is with > > balance and leg weakness. > > > > Thanks for the help, > > Joyce > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 I know it is toxic Kathy, but I have an excellent neurologist and we are trying different treatments for me. He had suggested methotrexate and if it had stopped the progression I would have been very happy. I have no adverse side effects but the MS is progressing and that is why I am trying the LDN, and if that does not work I will try Copaxon. In short, I am open to many things, but I do trust my doctor, so for now I will go along with his advice. I start the LDN tomorrow I hope, and I will keep you all posted on my experiences with it. Very exciting!! Joyce > > The methotrexate is very toxic. Try to read Dr. Neiper's thoughts on that > drug by contacting the library in Wisconsin. Their number is 608- 647-6513. > There are many other things. Why not try Procarin with the LDN or get the > Calcium EAP packet from the library. Best Wishes, Kathy > [low dose naltrexone] New Member > > > > Hi, I have been lurking for the past couple of weeks. I was diagnosed > > about 2 years ago at age 55 with secondary progressive MS. Seems I > > missed the relapse-remission phase of the disease except for one optic > > neuritis about 6 years ago. > > > > I would be interested in knowing if any members have secondary > > progressive MS and how the LDN helped or didn't help. Right now I am > > on methotrexate but the MS is progressing and my doctor here in NYC > > would like me to try Copaxon. However, he is willing to let me go on > > LDN also and says he has a few patients taking it and that the primary > > improvement seems to be with fatigue issues. My main problem is with > > balance and leg weakness. > > > > Thanks for the help, > > Joyce > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 I am on copaxone and LDN, that is the only abc drug thats ok with ldn. Give it a try and see if it helps. I feel about the same as I did before LDn with a few less naps, but I have only been on LDn a few months. -- In low dose naltrexone , " dollsesq " <DollsEsq@...> wrote: > > Thank you for all of the information Aletha. > > Have any of you continued on other medications while you take the > LDN? I am nervous about discontinuing other meds until I see if the > LDN helps me. > > Joyce > > > > > > Hi Joyce, > > > > Everyone seems to experience different levels of help with LDN and > different > > areas of help. I will send you a copy of the welcome e-mail in > just a > > moment. I hope you will find some help in answering your questions. > > > > It has been fantastic for my husband. We know of 2 people > personally that > > have been lucky enough to get out the wheel chair. Of course not > everyone > > experiences such a great relief, but most people get a significant > degree of > > help from LDN. I always tell everyone that you won't know what it > will do > > for you unless you try it. But you should stay on it for at least > 6 months > > to really see if it will help as a few have found it has taken that > long to > > see the full spectrum of new relief. Many also take supplements > and change > > their diets along with taking LDN. These things seem to work well > with LDN > > as they further help the immune system. > > > > Best of luck > > Aletha > > [low dose naltrexone] New Member > > > > > > > Hi, I have been lurking for the past couple of weeks. I was > diagnosed > > > about 2 years ago at age 55 with secondary progressive MS. Seems > I > > > missed the relapse-remission phase of the disease except for one > optic > > > neuritis about 6 years ago. > > > > > > I would be interested in knowing if any members have secondary > > > progressive MS and how the LDN helped or didn't help. Right now > I am > > > on methotrexate but the MS is progressing and my doctor here in > NYC > > > would like me to try Copaxon. However, he is willing to let me > go on > > > LDN also and says he has a few patients taking it and that the > primary > > > improvement seems to be with fatigue issues. My main problem is > with > > > balance and leg weakness. > > > > > > Thanks for the help, > > > Joyce > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Dear Michele, I asked Dr. herself about the frequency keys and program drivers for the zappers marketed under her name by Amrein and the " Dr. " Research Association [which has NO relation to Dr. herself]. She said she has no faith in any of those as an improvement on simple zapping. Hope this helps. Blessings! Arthur 888-533-7007 www.BestZapper.com www.BestWithoutDrugs.com New Member Hi All, I'm Michele from NY. I've been lurking for a few days now & thought it was about time I wrote in. A little about myself... I work professionally in the alternative health field & also own a health food business. I'm well versed in the field of herbs & classify myself as a self taught herbologist! I started using Dr. s Zapper to treat IBS a few years ago. It has helped me tremendously. I love it & would never be w/o it! I just purchased a few of the program keys. Today I used the Blood Pressure key & experienced shocks when the unit finishes its cycles. Has anyone experienced these small shocks or have any thoughts about it? I look forward to being an active contributor to the group. Thanks Michele Quote Link to comment Share on other sites More sharing options...
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