Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 In a message dated 5/26/05 5:50:49 PM Pacific Daylight Time, mitzi0099@... writes: I want to thank everyone that has given me advice the last few weeksso that I could get on LDN. Today I was successful! I had anappointment with my neuro and he has agreed to let me test LDN for the next 2 months. If everything goes well, I will continue.I have a few questions for those taking LDN. I am currently taking Betaseron which I will stop. My question is how long do I need tohave stopped Betaseron before starting LDN?My other question is about the compounding. I belong to Kaiser in Sacramento. Kaiser does compounding but they can't compound the Naltrexone into capsule format, that was the message on my machine. They can prepare a soluion of 50mg Naltrexone and 50mg water. If Ido this, how do I take the medication? I haven't talked to the pharmacy or my doctor yet to find out from them.Again, thank you everyone for all of the great resources and adviceto help me. I will keep the group posted after I have started.- Hi , I live in the Bay Area and have Kaiser. It took my pharmacy 2weeks to finaly outsource to a small private pharmacy in San called Leiter's Pharmacy 1.408.292.6772. They prepared a solution as you are describing, but with some surrupy sugar liquid. I next asked for a capsul form at the 3mg dose with a NON calcium carbonate filler. I actually walked into my pharmacy and asked them "what was the hold-up?" I then went home and faxed them a list of pharmacies across the country which could get the job done. They mail it to the Kaiser pharmacy and I pick it up for my usual copay price. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 After speaking to my doctor again this morning about my prescription, going to Skip's rather than mess with Kaiser at this time. My doctor has agreed to let me take LDN for longer than 2 months. Hopefully I will show improvements so that he my recommend LDN to his other patients. Because I got my new prescription late today, I haven't sent it there yet. Monday is a holiday, so I will send it on Tuesday. I will keep everyone posted after I start. - > I want to thank everyone that has given me advice the last few weeks > so that I could get on LDN. Today I was successful! I had an > appointment with my neuro and he has agreed to let me test LDN for > the next 2 months. If everything goes well, I will continue. > > I have a few questions for those taking LDN. I am currently taking > Betaseron which I will stop. My question is how long do I need to > have stopped Betaseron before starting LDN? > > My other question is about the compounding. I belong to Kaiser in > Sacramento. Kaiser does compounding but they can't compound the > Naltrexone into capsule format, that was the message on my machine. > They can prepare a soluion of 50mg Naltrexone and 50mg water. If I > do this, how do I take the medication? I haven't talked to the > pharmacy or my doctor yet to find out from them. > > Again, thank you everyone for all of the great resources and advice > to help me. I will keep the group posted after I have started. > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Hi All!! Was just recently diagnosed with MS....at the age of almost 55. Neuro said it looks like I have had it for some time. Just was diagnosed three weeks ago. Actually feeling pretty darned good. Still have that " kick-ass, pitbull " attitude...this diagnosis has not changed that. My entire career has been spent working for some of the best medical specialists in the Western USA. I have definitely had " western medicine " deeply ingrained into my mind and soul. Fortunately, I have had enough training to understand physiology of the brain function, nervous system,etc. Also had the luxury of getting to sit in on the " reading " of my MRI while my good friend, the neuroradiologist, interpreted my brain and the seven demyelinated lesions that have occurred deep in the white matter of my brain. After looking into the treatment modalities for MS and doing about 20 hours of research as well as speaking with some of the specialists for whom I have worked over the years...I made an informed decision to NOT play further havoc with my immune system (which seems to already be somewhat confused as it is greedily consuming my myelin). So....NO WAY, said I, to beta interferon therapy, etc. I discovered the information about LDN and am now pursing that avenue with my personal physician (who is a saint, I might add). I have only seen my new neuro once....he was the one who diagnosed me for certain...and the only thing we discussed in terms of treatment options were the " injectables " ......he did not mention LDN....I did not know about it at the time of my appointment. Since then...I saw my neuro's partner for nerve conduction studies as my neuro was pretty darned sure I also had bilateral carpal tunnel. I mentioned to my neuro's partner my interest in LDN....he about flipped out. Wondered why in the hell I would possibly even CONSIDER something that was " not proven " , " not tested " .etc...AND WHY I would reject the " proven modalities " . (you know...the 1400.00 a month stuff) To that question I answered.... " Let me count the reasons why " .......1) Crappy side effects from the beta interferons. 2) A WHOLE BUNCHA money for those drugs. 3) How good could they be when the once-monthly injectable was just pulled by the FDA? 4) I also mentioned that Viagra was not originally intended for ED but instead to increase circulation in heart patients. So...just because something was designed for one condition certainly does not preclude its use for another condition..... Anyhoo, it's obvious that this particular neuro does not play well with others unless they are willing to play the game by his rules..... I never have played well with others anyway. Fortunately, my private physician (the saint guy)....has gladly read over the information I provided to him about LDN and seems very willing to give this a whirl. Fortunately, there is a compounding pharmacy in Missoula Montana (I live 80 miles from Missoula) that is already compounding LDN for two other MS patients. So.....wish me luck with this. Feeling hopeful, as always. Best to you all and great to be part of this group to garner further information from all of you who have been walking this road for some time. [low dose naltrexone] Re: My LDN quest > After speaking to my doctor again this morning about my prescription, > going to Skip's rather than mess with Kaiser at this time. My doctor > has agreed to let me take LDN for longer than 2 months. Hopefully I > will show improvements so that he my recommend LDN to his other > patients. > > Because I got my new prescription late today, I haven't sent it there > yet. Monday is a holiday, so I will send it on Tuesday. I will keep > everyone posted after I start. > > - > > > > > > I want to thank everyone that has given me advice the last few weeks > > so that I could get on LDN. Today I was successful! I had an > > appointment with my neuro and he has agreed to let me test LDN for > > the next 2 months. If everything goes well, I will continue. > > > > I have a few questions for those taking LDN. I am currently taking > > Betaseron which I will stop. My question is how long do I need to > > have stopped Betaseron before starting LDN? > > > > My other question is about the compounding. I belong to Kaiser in > > Sacramento. Kaiser does compounding but they can't compound the > > Naltrexone into capsule format, that was the message on my > machine. > > They can prepare a soluion of 50mg Naltrexone and 50mg water. If I > > do this, how do I take the medication? I haven't talked to the > > pharmacy or my doctor yet to find out from them. > > > > Again, thank you everyone for all of the great resources and advice > > to help me. I will keep the group posted after I have started. > > > > - > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 if you're in the US, Skip's pharmacy in Boca Raton is about $16-20 a month. Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 > Hi All!! Was just recently diagnosed with MS....at the age of almost 55. > Neuro said it looks like I have had it for some time. Just was diagnosed > three weeks ago. > > Actually feeling pretty darned good. Still have that " kick-ass, pitbull " > attitude...this diagnosis has not changed that. > > My entire career has been spent working for some of the best medical > specialists in the Western USA. I have definitely had " western medicine " > deeply ingrained into my mind and soul. Fortunately, I have had enough > training to understand physiology of the brain function, nervous system,etc. > Also had the luxury of getting to sit in on the " reading " of my MRI while my > good friend, the neuroradiologist, interpreted my brain and the seven > demyelinated lesions that have occurred deep in the white matter of my > brain. > > After looking into the treatment modalities for MS and doing about 20 hours > of research as well as speaking with some of the specialists for whom I have > worked over the years...I made an informed decision to NOT play further > havoc with my immune system (which seems to already be somewhat confused as > it is greedily consuming my myelin). So....NO WAY, said I, to beta > interferon therapy, etc. > > I discovered the information about LDN and am now pursing that avenue with > my personal physician (who is a saint, I might add). I have only seen my > new neuro once....he was the one who diagnosed me for certain...and the only > thing we discussed in terms of treatment options were the > " injectables " ......he did not mention LDN....I did not know about it at the > time of my appointment. > > Since then...I saw my neuro's partner for nerve conduction studies as my > neuro was pretty darned sure I also had bilateral carpal tunnel. I > mentioned to my neuro's partner my interest in LDN....he about flipped out. > Wondered why in the hell I would possibly even CONSIDER something that was > " not proven " , " not tested " .etc...AND WHY I would reject the " proven > modalities " . (you know...the 1400.00 a month stuff) > > To that question I answered.... " Let me count the reasons why " .......1) > Crappy side effects from the beta interferons. 2) A WHOLE BUNCHA money for > those drugs. 3) How good could they be when the once-monthly injectable > was just pulled by the FDA? 4) I also mentioned that Viagra was not > originally intended for ED but instead to increase circulation in heart > patients. So...just because something was designed for one condition > certainly does not preclude its use for another condition..... > > Anyhoo, it's obvious that this particular neuro does not play well with > others unless they are willing to play the game by his rules..... I never > have played well with others anyway. > > Fortunately, my private physician (the saint guy)....has gladly read over > the information I provided to him about LDN and seems very willing to give > this a whirl. Fortunately, there is a compounding pharmacy in Missoula > Montana (I live 80 miles from Missoula) that is already compounding LDN for > two other MS patients. > > So.....wish me luck with this. Feeling hopeful, as always. > > Best to you all and great to be part of this group to garner further > information from all of you who have been walking this road for some time. > > > ========== , Make sure that the pharmacy you use does NOT use Calcium Carbonate as a filler in your capsules. CC has proven many times to be faulty rendering LDN to become sustained release and LDN must release fast. Also if you haven't already, get yourself tested for Lyme via Western Blot test to rule Lyme out, do NOT settle for just the ELISA test, insist on a Western Blot. The ELISA gives too many false negative results. Lyme mimicks MS in symptoms, MRI lesions and in the spinal fluid on spinal tap. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 > Hi All!! Was just recently diagnosed with MS....at the age of almost 55. > Neuro said it looks like I have had it for some time. Just was diagnosed > three weeks ago. > > Actually feeling pretty darned good. Still have that " kick-ass, pitbull " > attitude...this diagnosis has not changed that. > > My entire career has been spent working for some of the best medical > specialists in the Western USA. I have definitely had " western medicine " > deeply ingrained into my mind and soul. Fortunately, I have had enough > training to understand physiology of the brain function, nervous system,etc. > Also had the luxury of getting to sit in on the " reading " of my MRI while my > good friend, the neuroradiologist, interpreted my brain and the seven > demyelinated lesions that have occurred deep in the white matter of my > brain. > > After looking into the treatment modalities for MS and doing about 20 hours > of research as well as speaking with some of the specialists for whom I have > worked over the years...I made an informed decision to NOT play further > havoc with my immune system (which seems to already be somewhat confused as > it is greedily consuming my myelin). So....NO WAY, said I, to beta > interferon therapy, etc. > > I discovered the information about LDN and am now pursing that avenue with > my personal physician (who is a saint, I might add). I have only seen my > new neuro once....he was the one who diagnosed me for certain...and the only > thing we discussed in terms of treatment options were the > " injectables " ......he did not mention LDN....I did not know about it at the > time of my appointment. > > Since then...I saw my neuro's partner for nerve conduction studies as my > neuro was pretty darned sure I also had bilateral carpal tunnel. I > mentioned to my neuro's partner my interest in LDN....he about flipped out. > Wondered why in the hell I would possibly even CONSIDER something that was > " not proven " , " not tested " .etc...AND WHY I would reject the " proven > modalities " . (you know...the 1400.00 a month stuff) > > To that question I answered.... " Let me count the reasons why " .......1) > Crappy side effects from the beta interferons. 2) A WHOLE BUNCHA money for > those drugs. 3) How good could they be when the once-monthly injectable > was just pulled by the FDA? 4) I also mentioned that Viagra was not > originally intended for ED but instead to increase circulation in heart > patients. So...just because something was designed for one condition > certainly does not preclude its use for another condition..... > > Anyhoo, it's obvious that this particular neuro does not play well with > others unless they are willing to play the game by his rules..... I never > have played well with others anyway. > > Fortunately, my private physician (the saint guy)....has gladly read over > the information I provided to him about LDN and seems very willing to give > this a whirl. Fortunately, there is a compounding pharmacy in Missoula > Montana (I live 80 miles from Missoula) that is already compounding LDN for > two other MS patients. > > So.....wish me luck with this. Feeling hopeful, as always. > > Best to you all and great to be part of this group to garner further > information from all of you who have been walking this road for some time. > > > ========== , Make sure that the pharmacy you use does NOT use Calcium Carbonate as a filler in your capsules. CC has proven many times to be faulty rendering LDN to become sustained release and LDN must release fast. Also if you haven't already, get yourself tested for Lyme via Western Blot test to rule Lyme out, do NOT settle for just the ELISA test, insist on a Western Blot. The ELISA gives too many false negative results. Lyme mimicks MS in symptoms, MRI lesions and in the spinal fluid on spinal tap. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 [low dose naltrexone] Re: My LDN quest > >> Hi All!! Was just recently diagnosed with MS....at the age of almost 55. >> Neuro said it looks like I have had it for some time. Just was >> diagnosed >> three weeks ago. >> >> Actually feeling pretty darned good. Still have that " kick-ass, pitbull " >> attitude...this diagnosis has not changed that. >> >> My entire career has been spent working for some of the best medical >> specialists in the Western USA. I have definitely had " western medicine " >> deeply ingrained into my mind and soul. Fortunately, I have had enough >> training to understand physiology of the brain function, nervous >> system,etc. >> Also had the luxury of getting to sit in on the " reading " of my MRI while >> my >> good friend, the neuroradiologist, interpreted my brain and the seven >> demyelinated lesions that have occurred deep in the white matter of my >> brain. >> >> After looking into the treatment modalities for MS and doing about 20 >> hours >> of research as well as speaking with some of the specialists for whom I >> have >> worked over the years...I made an informed decision to NOT play further >> havoc with my immune system (which seems to already be somewhat confused >> as >> it is greedily consuming my myelin). So....NO WAY, said I, to beta >> interferon therapy, etc. >> >> I discovered the information about LDN and am now pursing that avenue >> with >> my personal physician (who is a saint, I might add). I have only seen my >> new neuro once....he was the one who diagnosed me for certain...and the >> only >> thing we discussed in terms of treatment options were the >> " injectables " ......he did not mention LDN....I did not know about it at >> the >> time of my appointment. >> >> Since then...I saw my neuro's partner for nerve conduction studies as my >> neuro was pretty darned sure I also had bilateral carpal tunnel. I >> mentioned to my neuro's partner my interest in LDN....he about flipped >> out. >> Wondered why in the hell I would possibly even CONSIDER something that >> was >> " not proven " , " not tested " .etc...AND WHY I would reject the " proven >> modalities " . (you know...the 1400.00 a month stuff) >> >> To that question I answered.... " Let me count the reasons why " .......1) >> Crappy side effects from the beta interferons. 2) A WHOLE BUNCHA money >> for >> those drugs. 3) How good could they be when the once-monthly injectable >> was just pulled by the FDA? 4) I also mentioned that Viagra was not >> originally intended for ED but instead to increase circulation in heart >> patients. So...just because something was designed for one condition >> certainly does not preclude its use for another condition..... >> >> Anyhoo, it's obvious that this particular neuro does not play well with >> others unless they are willing to play the game by his rules..... I >> never >> have played well with others anyway. >> >> Fortunately, my private physician (the saint guy)....has gladly read over >> the information I provided to him about LDN and seems very willing to >> give >> this a whirl. Fortunately, there is a compounding pharmacy in Missoula >> Montana (I live 80 miles from Missoula) that is already compounding LDN >> for >> two other MS patients. >> >> So.....wish me luck with this. Feeling hopeful, as always. >> >> Best to you all and great to be part of this group to garner further >> information from all of you who have been walking this road for some >> time. >> >> >> > > ========== > > , > > Make sure that the pharmacy you use does NOT use Calcium Carbonate as a > filler in your capsules. CC has proven many times to be faulty rendering > LDN to become sustained release and LDN must release fast. > > Also if you haven't already, get yourself tested for Lyme via Western Blot > test to rule Lyme out, do NOT settle for just the ELISA test, insist on a > Western Blot. The ELISA gives too many false negative results. Lyme > mimicks MS in symptoms, MRI lesions and in the spinal fluid on spinal tap. > > > I am using calcium carbonate in my LDN capsules as recommended by Dr > Lawerance of UK and have found no ill effects. The caps where filled in Australia. Malcolm > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Wow, thank you for this information. You sound like me with repetitive action problems compounding the whole thing. HOw much does LDN cost, and does Medicaid pay for it? Thank you, ~ cyd =^= spacecadet =^= -----Original Message-----From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of BrenSent: Saturday, May 28, 2005 11:45 AMlow dose naltrexone Subject: [low dose naltrexone] Re: My LDN quest> Hi All!! Was just recently diagnosed with MS....at the age of almost 55.> Neuro said it looks like I have had it for some time. Just was diagnosed> three weeks ago.> > Actually feeling pretty darned good. Still have that "kick-ass, pitbull"> attitude...this diagnosis has not changed that.> > My entire career has been spent working for some of the best medical> specialists in the Western USA. I have definitely had "western medicine"> deeply ingrained into my mind and soul. Fortunately, I have had enough> training to understand physiology of the brain function, nervous system,etc.> Also had the luxury of getting to sit in on the "reading" of my MRI while my> good friend, the neuroradiologist, interpreted my brain and the seven> demyelinated lesions that have occurred deep in the white matter of my> brain.> > After looking into the treatment modalities for MS and doing about 20 hours> of research as well as speaking with some of the specialists for whom I have> worked over the years...I made an informed decision to NOT play further> havoc with my immune system (which seems to already be somewhat confused as> it is greedily consuming my myelin). So....NO WAY, said I, to beta> interferon therapy, etc.> > I discovered the information about LDN and am now pursing that avenue with> my personal physician (who is a saint, I might add). I have only seen my> new neuro once....he was the one who diagnosed me for certain...and the only> thing we discussed in terms of treatment options were the> "injectables"......he did not mention LDN....I did not know about it at the> time of my appointment.> > Since then...I saw my neuro's partner for nerve conduction studies as my> neuro was pretty darned sure I also had bilateral carpal tunnel. I> mentioned to my neuro's partner my interest in LDN....he about flipped out.> Wondered why in the hell I would possibly even CONSIDER something that was> "not proven", "not tested".etc...AND WHY I would reject the "proven> modalities". (you know...the 1400.00 a month stuff)> > To that question I answered...."Let me count the reasons why".......1)> Crappy side effects from the beta interferons. 2) A WHOLE BUNCHA money for> those drugs. 3) How good could they be when the once-monthly injectable> was just pulled by the FDA? 4) I also mentioned that Viagra was not> originally intended for ED but instead to increase circulation in heart> patients. So...just because something was designed for one condition> certainly does not preclude its use for another condition.....> > Anyhoo, it's obvious that this particular neuro does not play well with> others unless they are willing to play the game by his rules..... I never> have played well with others anyway.> > Fortunately, my private physician (the saint guy)....has gladly read over> the information I provided to him about LDN and seems very willing to give> this a whirl. Fortunately, there is a compounding pharmacy in Missoula> Montana (I live 80 miles from Missoula) that is already compounding LDN for> two other MS patients.> > So.....wish me luck with this. Feeling hopeful, as always.> > Best to you all and great to be part of this group to garner further> information from all of you who have been walking this road for some time.> > > ==========,Make sure that the pharmacy you use does NOT use Calcium Carbonate as a filler in your capsules. CC has proven many times to be faulty rendering LDN to become sustained release and LDN must release fast.Also if you haven't already, get yourself tested for Lyme via Western Blot test to rule Lyme out, do NOT settle for just the ELISA test, insist on a Western Blot. The ELISA gives too many false negative results. Lyme mimicks MS in symptoms, MRI lesions and in the spinal fluid on spinal tap. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Hi everyone, My doctor has prescirbed LDN for me and I have been taking 3.0mg for about a week now. I have already felt some changes. Since March/April I have been having problems standing, movement in general. Since starting LDN I have more movement, not ready to start walking yet, but I can wait:) I don't get fatigued like before, don't need my mid day nap. I have been able to increase my hours at work. And the best part, my thinking is so much clearer and I remember stuff! I remember what happened in the new Star Wars movie that I saw a week ago!! Thank you everyone for getting me on the right track to get a prescription and Skip's! - Quote Link to comment Share on other sites More sharing options...
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