Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Saw neurologist today. Very discouraged. Oh, well, at least I'm off all the needles and don't have to wait for any MRIs. I am SP and if I get anything acute I will show up at clinic for my steroids. Anybody know the fastest way to get a jar of naltrexone? I'm in Canada and the no-prescription web sites won't send stuff here without one. I'm willing to pay for a prescription if that's what it takes. I am proof that a disease in search of a cure will *not* be stopped. I intend to do a dance around my doctors in six months. - Sullivan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 So what are the chances that so many people that don't know each other would misreport the message " This drug has stopped the progress of my MS. I have not got any worse since xx. In fact, since xx the following former symptoms of MS have disappeared or improved:... " ? Let them triple blind mice gazebo control that! I think you are only changing the timing but not the total daily intake. If less is more why not half the dose you are splitting? (0.75 and 0.875) It would be twice as cheap. And it might answer the question more forcefully. Take it for 3 days in the evening and then for 3 days in the morning. Then again I am feeling a bit pissed off right now so maybe you shouldn't listen to me... I would do it myself if I could. -Sullivan > Hello again! I haven't posted in a while, but I haven't missed a day on this board. I wanted to weigh in today on two burning questions which come up time and again in this forum. Those questions would be (a) is it possible, in terms of dose, that less might be more? and ( contrary to Dr. Bihari's recommendation, might there be any upside to splitting one's daily dosage? When my wife Debbie finally got off Avonex and Rebif after four years on that road, she started to get her life back a little. When we got her introduced to LDN, more improvement ensued. I've talked with her at length about the threads on this board which discuss why is is unlikely that LDN will ever have any clinical studies done for its impact on MS because of the $$$$$$$ factor and the antagonism it would get from big pharma and the traditional medical mindset. I, personally, love the idea that we here - all of us - are running our own clinical study, albeit informal and anecdotal, day in and day out . . . . and that our story - our results - mean something - if only to us. Truth is, there's power in that - there's an awful lot of power in that. We have changed minds already - - like that of our neurologist, who wrote the scripts for both of us based on information we brought him from this board. The bottom line is this. LDN has very little downside, comparatively speaking. It's not like that multitude of drugs we see advertised every day on TV which run through 90 seconds of side effects - everything from possible stroke to oily discharge (my favorite) - where you're left with the idea that the disease couldn't possibly be as bad as the side effects of the drugs they're pushing to treat it. Armed with that logic, three days ago we got large prescriptions filled for 1.75 and 1.5 mg. of LDN. Our filler, incidentally, is gelatin. Ron, our compounder, feels gelatin to be the best for mixing LDN. Deb had been taking 3 mg. each evening before bed and had been getting some 2 a.m. to 6 a.m. " miracles " from time to time, but by morning and throughout the day things were pretty much the same as they were before she started LDN. She did that for about 2 months. Three nights ago Deb took 1.5 mg. before bed and another 1.5 mg. mid-morning. And the difference is hard to describe. Aside from all the motor improvements, etc., some of which are sustained throughout the day, I am having a hard time believing the attitudinal change. I actually heard her say she felt good yesterday morning for the first time in Heaven knows how long. The girl can smile, and that smile was as beautiful yesterday as it was the first day I met her. Three days does not a success story make. I know that. But we're 3 for 3 heading into tonight. And we're branching off into a relatively fertile area of our collective LDN research in this large, collective, clinical study of ours. Semi-pioneers of a sort. Just wanted to report in to the troops that things are looking very good on this flank. Certainly will keep you posted as we move further down this road. -Al > > _______________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi , I am so happy that your wife is responding better to the split doseage. It is almost as though, your post answered my prayer. I have prayed " why God is this working so well for others and not for me " I had often thought about spliting the dose, but the way it was explained by Dr. Bahari....it only works if you take it between 9 & 2. I have been doing that for 5 months now, and at first my mornings were great and then about noon, I'd cave in. Lately I haven't felt all that great in the morning. I have odd sleeping habits...not the same every night. That may be the difference here with your wife and me....she seems to be doing the tango between 2 & 6am, and that's me sometimes. So CHRIS.....maybe our circadins or whatever aren't in normal sinc anyway. and that is why the split dose is helpful to 's wife. and perhaps to me....I will sure find out, because starting tonight I am spliting my 3mg and taking half tonight and half mid morning. Thanks so much, , for your post, and I'll let you all know how it goes. And do keep us posted as to your wifes responses to this new venture. Oh I wanted to ask...what time at night does your wife take her LDN? Much love and many prayers to you both and to all here as well. ~SallyC. > Hello again! I haven't posted in a while, but I haven't missed a day on this board. I wanted to weigh in today on two burning questions which come up time and again in this forum. Those questions would be (a) is it possible, in terms of dose, that less might be more? and ( contrary to Dr. Bihari's recommendation, might there be any upside to splitting one's daily dosage? When my wife Debbie finally got off Avonex and Rebif after four years on that road, she started to get her life back a little. When we got her introduced to LDN, more improvement ensued. I've talked with her at length about the threads on this board which discuss why is is unlikely that LDN will ever have any clinical studies done for its impact on MS because of the $$$$$$$ factor and the antagonism it would get from big pharma and the traditional medical mindset. I, personally, love the idea that we here - all of us - are running our own clinical study, albeit informal and anecdotal, day in and day out . . . . and that our story - our results - mean something - if only to us. Truth is, there's power in that - there's an awful lot of power in that. We have changed minds already - - like that of our neurologist, who wrote the scripts for both of us based on information we brought him from this board. The bottom line is this. LDN has very little downside, comparatively speaking. It's not like that multitude of drugs we see advertised every day on TV which run through 90 seconds of side effects - everything from possible stroke to oily discharge (my favorite) - where you're left with the idea that the disease couldn't possibly be as bad as the side effects of the drugs they're pushing to treat it. Armed with that logic, three days ago we got large prescriptions filled for 1.75 and 1.5 mg. of LDN. Our filler, incidentally, is gelatin. Ron, our compounder, feels gelatin to be the best for mixing LDN. Deb had been taking 3 mg. each evening before bed and had been getting some 2 a.m. to 6 a.m. " miracles " from time to time, but by morning and throughout the day things were pretty much the same as they were before she started LDN. She did that for about 2 months. Three nights ago Deb took 1.5 mg. before bed and another 1.5 mg. mid- morning. And the difference is hard to describe. Aside from all the motor improvements, etc., some of which are sustained throughout the day, I am having a hard time believing the attitudinal change. I actually heard her say she felt good yesterday morning for the first time in Heaven knows how long. The girl can smile, and that smile was as beautiful yesterday as it was the first day I met her. Three days does not a success story make. I know that. But we're 3 for 3 heading into tonight. And we're branching off into a relatively fertile area of our collective LDN research in this large, collective, clinical study of ours. Semi-pioneers of a sort. Just wanted to report in to the troops that things are looking very good on this flank. Certainly will keep you posted as we move further down this road. -Al > > _______________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi Chris So sorry that your neuro was of the chicken variety....there are many of those around, including mine and now my Daughters too. I wish I could help you get a script....My friend from Ontario is having the same problem as you.....I think there is a doc in Sasq who has prescribed ldn, but my friend cant go there. Much luck to you on find someone there to write you a script....I know that there is a compounmding pharmacy for ldn in Toronto. Regards, Sally > Saw neurologist today. > > Very discouraged. Oh, well, at least I'm off all the needles and > don't have to wait for any MRIs. I am SP and if I get anything > acute I will show up at clinic for my steroids. > > Anybody know the fastest way to get a jar of naltrexone? I'm in > Canada and the no-prescription web sites won't send stuff here without > one. I'm willing to pay for a prescription if that's what it takes. > > I am proof that a disease in search of a cure will *not* be stopped. > > I intend to do a dance around my doctors in six months. > > - Sullivan Quote Link to comment Share on other sites More sharing options...
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