Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 I just joined this list. I was rxed the sublingual form of low dose naltrexone recently. It is causing some nausea. I have chronic nausea anyway but worsened with the introduction of LDN it would seem I posted my profile here remedy find <http://www.remedyfind.com/show_profile.asp?id=86281> http://www.remedyfind.com/hc-Multiple-Sclerosis.asp The sublingual form seems to not be as often recognized. I found it discussed here http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1120234688 I am unclear on how to take it in conjunction with Avonex which I am still on. For last week, I did do take the LDN on the day of and the day after the injection. I also am in a lot of pain but don't use pain med much at all. I am unclear on whether the LDN will counteract any pain meds altogether. Anyway thanks for listening K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , Dr. Bihari states that Avonex and LDN are NOT compatible. Regards, Tom [low dose naltrexone] taking sublingual form of ldn; would like input re nausea etc I just joined this list. I was rxed the sublingual form of low dose naltrexone recently. It is causing some nausea. I have chronic nausea anyway but worsened with the introduction of LDN it would seem I posted my profile here remedy find <http://www.remedyfind.com/show_profile.asp?id=86281> http://www.remedyfind.com/hc-Multiple-Sclerosis.asp The sublingual form seems to not be as often recognized. I found it discussed here http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1120234688 I am unclear on how to take it in conjunction with Avonex which I am still on. For last week, I did do take the LDN on the day of and the day after the injection. I also am in a lot of pain but don't use pain med much at all. I am unclear on whether the LDN will counteract any pain meds altogether. Anyway thanks for listening K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 > I just joined this list. I was rxed the sublingual form of low dose naltrexone > recently. It is causing some nausea. I have chronic nausea anyway but > worsened with the introduction of LDN it would seem I posted my profile here > remedy find <http://www.remedyfind.com/show_profile.asp?id=86281> > > http://www.remedyfind.com/hc-Multiple-Sclerosis.asp > > The sublingual form seems to not be as often recognized. I found it > discussed here http://ldn.proboards3.com/index.cgi?board=forum > <http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=11202 > 34688> & action=display & thread=1120234688 > > I am unclear on how to take it in conjunction with Avonex which I am still > on. For last week, I did do take the LDN on the day of and the day after the > injection. I also am in a lot of pain but don't use pain med much at all. I > am unclear on whether the LDN will counteract any pain meds altogether. > > Anyway thanks for listening > K ============= , Help us out here. How do you get the sublingual into 3.0mg or 4.5mg? What pharmacy do you get it from? How is it prepared? What sort of a doctor prescribed this? Do you have MS? What milligram are you taking? What time do you take it? How often do you take it? Do you take it nightly? I'm sure none of us have heard of this sublingual LDN already prepared in 3.0mg or 4.5mg doses. Please explain so we can help you. Go to the LDN website and read thoroughly...including the Further Q & A page. LDN website http://www.low dose naltrexone.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 I posted most of the answers to your questions in the link under remedy find. I was diagnosed RRMS by an MS neuro. However this diagnosis was very recent and the doc is quite conerned re my rapid progression in symptoms, EDSS level in the 6-6.5 range already, and constant excaberations resulting in 3 hospitalizations in past 2 months. My neuro treats MS symptoms, prescribes Avonex and Rxes my IVIG monthly booster. Meanwhile, I saw my enviro Med MD who said why do't you try this LDN (which I had asked about) but it was in sublingual form. The pharmacy RX reads from the Dr himself. I am to take 50 parts or 2.5ccc via syringe between 9pm and 1am. (I have folowup appt at which time dose was potentially to be doubled). In the link below on the lDN site, I did see that they explain what sounds like how my doctor is dispensing this form .You asked what pharmacy do you get it from? I got it dispensed directly from the doctor. Where? (ton, SC; Dr. Lieberman). How is it prepared? I assume it is LDN powder prepared in liquid. What sort of a doctor prescribed this? An environ Med MD in the field for more than 30 years. Do you have MS? Yes, diagnosed by MS neuro and under their treatment. They are concerned re " rapid progression without let up " . What milligram are you taking? It says 1.5cc or 50parts and uses a diffderent syringe and other meds he dispenses. What time do you take it? 9-1am How often do you take it? 1x per day but it is causing nausea and wanted input Do you take it nightly? I was going to however I decided not to on the day of and the day after I did my avonex shot. I wasn't sure what to do. >>>You said: I'm sure none of us have heard of this sublingual LDN already prepared in 3.0mg or 4.5mg doses. I wasn't sure if anyone was or wasn't. I included a link below where it appears that in July 05, someone posted about this type of formulation. I had never heard of it either and frnkly expected to leave my doc's office with an RX for the pill. re > > I just joined this list. I was rxed the sublingual form of low dose naltrexone > > recently. It is causing some nausea. I have chronic nausea anyway but > > worsened with the introduction of LDN it would seem I posted my profile here > > remedy find <http://www.remedyfind.com/show_profile.asp?id=86281> > > > > http://www.remedyfind.com/hc-Multiple-Sclerosis.asp > > > > The sublingual form seems to not be as often recognized. I found it > > discussed here http://ldn.proboards3.com/index.cgi?board=forum > > <http://ldn.proboards3.com/index.cgi? board=forum & action=display & thread=11202 > > 34688> & action=display & thread=1120234688 > > > > I am unclear on how to take it in conjunction with Avonex which I am still > > on. For last week, I did do take the LDN on the day of and the day after the > > injection. I also am in a lot of pain but don't use pain med much at all. I > > am unclear on whether the LDN will counteract any pain meds altogether. > > > > Anyway thanks for listening > > K > ============= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 This means I have to decide whether to stop the avonex?? I was hoping I could stagger and take the LDN on days perhaps when not taking avonex. I am concerned what to do because I am experiencing such rapid progression of symptoms since diagnosis. I noted others on sites? stating they used the LDN coconcurrently with interferons initially. --- In low dose naltrexone , " tom bayuk " <tbayuk@c...> wrote: > , > Dr. Bihari states that Avonex and LDN are NOT compatible. > Regards, > Tom > > (rest snipped) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 So you are taking the liquid method of LDN made with naltrexone. I always thought sublingual meant putting a pill under the tongue and let it melt. Sounds like you started on 1.5mgs and working up to 4.5mgs eventually. As Tom said, you can't take interferons with LDN b/c incompatible and LDN won't work. www.goodshape.net has homemade LDN instructions at the bottom you can read how to make your own from dissolving a 50mg Revia pill. Copaxone can be taken with LDN. I wouldn't touch any of the injections and just try LDN and get up to 4.5mgs soon as you can. I think you mentioned nausea. Find out how the pharmacist is making your liquid LDN and if a filler is in it b/c you can change fillers or make your own from a Revia pill if it isn't lactose you are getting nauseated from. And Dr. Bihari says to take LDN between 9pm and 3am and I find it's best to take at the same time nightly. And another member here said she took 25mgs during day and stopped her progression right in it's tracks but that might not work for everyone. She doesn't do this unless some progressment starts and takes normally nightly doses of 4.5mgs liquid method. Maybe she'll email you. I know liquid made with the Bristol Myers Revia works for me best and generic did not and I started going downhill on 3 weeks of generic and back on BM Revia and going back to normal. You can also order Bristol Myers Revia from www.medsmex.com from Mexico. Some pharmacies have BM Revia and some don't. Rhonda > > , > > Dr. Bihari states that Avonex and LDN are NOT compatible. > > Regards, > > Tom > > > > (rest snipped) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 > > > I just joined this list. I was rxed the sublingual form of > low dose naltrexone > > > recently. It is causing some nausea. I have chronic nausea > anyway but > > > worsened with the introduction of LDN it would seem I posted my > profile here > > > remedy find <http://www.remedyfind.com/show_profile.asp?id=86281> > > > > > > http://www.remedyfind.com/hc-Multiple-Sclerosis.asp > > > > > > The sublingual form seems to not be as often recognized. I > found it > > > discussed here http://ldn.proboards3.com/index.cgi?board=forum > > > <http://ldn.proboards3.com/index.cgi? > board=forum & action=display & thread=11202 > > > 34688> & action=display & thread=1120234688 > > > > > > I am unclear on how to take it in conjunction with Avonex which > I am still > > > on. For last week, I did do take the LDN on the day of and the > day after the > > > injection. I also am in a lot of pain but don't use pain med > much at all. I > > > am unclear on whether the LDN will counteract any pain meds > altogether. > > > > > > Anyway thanks for listening > > > K > > ============= , Am I reading correctly that this is liquid LDN that you are placing under your tongue? Find out if your pharmacy is using pure naltrexone powder. I am very surprised that your neuro is giving you an immune system suppressant in Avonex and then turning around and boosting you with IVIg. This doesn't make any sense. How can either drug work when one is suppressing the immune system and one is boosting the immune system¿¿¿ That's why Bihari is against using LDN with all immune system suppressants. Stop placing the liquid under your tongue, just drop it in mouth and swallow. Make sure there is absolutely nothing in your liquid LDN but pure naltrexone powder and a flavoring. This mixture must be kept refrigerated from the pharmacy to you and you must keep it in fridge at home. Shake well before each use. Should keep for 1 month. 1.5cc is 1.5ml. If the pharmacy is using ReVia tablets to crush and dissolve into liquid you may be allergic to the filler that's in the ReVia brand Naltrexone pill. The pure naltrexone powder does not have any fillers. Try staying on 1.5ml for 2 weeks just swallowing it, not putting under tongue and then swallowing. Then try upping to 2.0ml for 2 to 3 weeks then up to 2.5ml for awhile and so forth. You need to get tested for Lyme Disease via a Western Blot test. Do not settle for just the ELISA test as it can give too many false negatives. The Western Blot is not a 100% in detecting Lyme but it is more sensitve than the ELISA. Lyme can mimic MS in symptoms, MRI lesions and in spinal fluid exams. Rule out Lyme ASAP. The IVIg and LDN are immune system boosters...they modulate the immune system back upward. The Avonex, other interferons, chemo's and steroids suppress the immune system...they modulate the immune system downward. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 CONCERNING YOUR RAPID PROGRESSION- HAVE YOU BEEN IN CONTACT WITH PUPPIES THAT HAVE DISTEMPER OR DID YOU RECENTLY GET A VACINATION? -- [low dose naltrexone] Re: taking sublingual form of ldn; would like input re nausea etc > > > I just joined this list. I was rxed the sublingual form of > low dose naltrexone> > > recently. It is causing some nausea. I have chronic nausea > anyway but> > > worsened with the introduction of LDN it would seem I posted my > profile here> > > remedy find <http://www.remedyfind.com/show_profile.asp?id=86281>> > > > > > http://www.remedyfind.com/hc-Multiple-Sclerosis.asp > > > > > > The sublingual form seems to not be as often recognized. I > found it> > > discussed here http://ldn.proboards3.com/index.cgi?board=forum> > > <http://ldn.proboards3.com/index.cgi?> board=forum & action=display & thread=11202> > > 34688> & action=display & thread=1120234688> > > > > > I am unclear on how to take it in conjunction with Avonex which > I am still> > > on. For last week, I did do take the LDN on the day of and the > day after the> > > injection. I also am in a lot of pain but don't use pain med > much at all. I> > > am unclear on whether the LDN will counteract any pain meds > altogether.> > > > > > Anyway thanks for listening> > > K> > =============,Am I reading correctly that this is liquid LDN that you are placing under your tongue? Find out if your pharmacy is using pure naltrexone powder. I am very surprised that your neuro is giving you an immune system suppressant in Avonex and then turning around and boosting you with IVIg. This doesn't make any sense. How can either drug work when one is suppressing the immune system and one is boosting the immune system¿¿¿ That's why Bihari is against using LDN with all immune system suppressants. Stop placing the liquid under your tongue, just drop it in mouth and swallow. Make sure there is absolutely nothing in your liquid LDN but pure naltrexone powder and a flavoring. This mixture must be kept refrigerated from the pharmacy to you and you must keep it in fridge at home. Shake well before each use. Should keep for 1 month. 1.5cc is 1.5ml. If the pharmacy is using ReVia tablets to crush and dissolve into liquid you may be allergic to the filler that's in the ReVia brand Naltrexone pill. The pure naltrexone powder does not have any fillers. Try staying on 1.5ml for 2 weeks just swallowing it, not putting under tongue and then swallowing. Then try upping to 2.0ml for 2 to 3 weeks then up to 2.5ml for awhile and so forth.You need to get tested for Lyme Disease via a Western Blot test. Do not settle for just the ELISA test as it can give too many false negatives. The Western Blot is not a 100% in detecting Lyme but it is more sensitve than the ELISA. Lyme can mimic MS in symptoms, MRI lesions and in spinal fluid exams. Rule out Lyme ASAP.The IVIg and LDN are immune system boosters...they modulate the immune system back upward.The Avonex, other interferons, chemo's and steroids suppress the immune system...they modulate the immune system downward. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Personally I would ask the doctor if I could stop Avonex and wait about 3 to 4 weeks and start on LDN in the pill form at 1.5, then add 1.5 within a month. Then I would try the liquid form if that is not sufficient. If you are female I would try and go up to 4.5mg. If you are a male then you might do best to stay at 3.0mg. [low dose naltrexone] Re: taking sublingual form of ldn; would like input re nausea etc > > > I just joined this list. I was rxed the sublingual form of > low dose naltrexone > > > recently. It is causing some nausea. I have chronic nausea > anyway but > > > worsened with the introduction of LDN it would seem I posted my > profile here > > > remedy find <http://www.remedyfind.com/show_profile.asp?id=86281> > > > > > > http://www.remedyfind.com/hc-Multiple-Sclerosis.asp > > > > > > The sublingual form seems to not be as often recognized. I > found it > > > discussed here http://ldn.proboards3.com/index.cgi?board=forum > > > <http://ldn.proboards3.com/index.cgi? > board=forum & action=display & thread=11202 > > > 34688> & action=display & thread=1120234688 > > > > > > I am unclear on how to take it in conjunction with Avonex which > I am still > > > on. For last week, I did do take the LDN on the day of and the > day after the > > > injection. I also am in a lot of pain but don't use pain med > much at all. I > > > am unclear on whether the LDN will counteract any pain meds > altogether. > > > > > > Anyway thanks for listening > > > K > > ============= , Am I reading correctly that this is liquid LDN that you are placing under your tongue? Find out if your pharmacy is using pure naltrexone powder. I am very surprised that your neuro is giving you an immune system suppressant in Avonex and then turning around and boosting you with IVIg. This doesn't make any sense. How can either drug work when one is suppressing the immune system and one is boosting the immune system¿¿¿ That's why Bihari is against using LDN with all immune system suppressants. Stop placing the liquid under your tongue, just drop it in mouth and swallow. Make sure there is absolutely nothing in your liquid LDN but pure naltrexone powder and a flavoring. This mixture must be kept refrigerated from the pharmacy to you and you must keep it in fridge at home. Shake well before each use. Should keep for 1 month. 1.5cc is 1.5ml. If the pharmacy is using ReVia tablets to crush and dissolve into liquid you may be allergic to the filler that's in the ReVia brand Naltrexone pill. The pure naltrexone powder does not have any fillers. Try staying on 1.5ml for 2 weeks just swallowing it, not putting under tongue and then swallowing. Then try upping to 2.0ml for 2 to 3 weeks then up to 2.5ml for awhile and so forth. You need to get tested for Lyme Disease via a Western Blot test. Do not settle for just the ELISA test as it can give too many false negatives. The Western Blot is not a 100% in detecting Lyme but it is more sensitve than the ELISA. Lyme can mimic MS in symptoms, MRI lesions and in spinal fluid exams. Rule out Lyme ASAP. The IVIg and LDN are immune system boosters...they modulate the immune system back upward. The Avonex, other interferons, chemo's and steroids suppress the immune system...they modulate the immune system downward. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 I have to decide first (unfortunately) whether I am willing to jump off the beta interferon's that I just stated as a newly diagnosed MSer;. I have had huge disabilities and exasperations in recent months and I am unclear if the course of action below for example would be good. I may consider monitoring LDN and not doing that for now. I don't know. I am a female btw and thanks so much for offering your ideas. I have to admit that I didn't know that LDN was totally contraindicated with betainterferons whatsoever and I am also unclear how to manage pain if there are contraindications with narcotics for example which I despite anyway but use at times. From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Aletha WittmannSent: Friday, August 19, 2005 12:00 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: taking sublingual form of ldn; would like input re nausea etc Personally I would ask the doctor if I could stop Avonex and wait about 3 to 4 weeks and start on LDN in the pill form at 1.5, then add 1.5 within a month. Then I would try the liquid form if that is not sufficient. If you are female I would try and go up to 4.5mg. If you are a male then you might do best to stay at 3.0mg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 That is right...one or the other. Regards, Tom [low dose naltrexone] Re: taking sublingual form of ldn; would like input re nausea etc > This means I have to decide whether to stop the avonex?? I was hoping > I could stagger and take the LDN on days perhaps when not taking > avonex. I am concerned what to do because I am experiencing such rapid > progression of symptoms since diagnosis. > I noted others on sites? stating they used the LDN coconcurrently with > interferons initially. > > >> , >> Dr. Bihari states that Avonex and LDN are NOT compatible. >> Regards, >> Tom >> >> (rest snipped) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 My neuroligist told me (i have MS) that i cannot have both avonex and LDN. Avonex suppresses the immune system and LDN builds it up. You are just fighting the drugs against each other and causing more problems than you had before. neurologist says copaxone is the only MS drug that does not act in the same way as the interferon drugs. you can take copaxone with LDN. tom bayuk wrote: That is right...one or the other. Regards, Tom [low dose naltrexone] Re: taking sublingual form of ldn; would like input re nausea etc > This means I have to decide whether to stop the avonex?? I was hoping > I could stagger and take the LDN on days perhaps when not taking > avonex. I am concerned what to do because I am experiencing such rapid > progression of symptoms since diagnosis. > I noted others on sites? stating they used the LDN coconcurrently with > interferons initially. > > >> , >> Dr. Bihari states that Avonex and LDN are NOT compatible. >> Regards, >> Tom >> >> (rest snipped) > > > > > > > Quote Link to comment Share on other sites More sharing options...
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